Workout

Yoga as workout

Yes, that is what I’m sharing with you today! Yogamovements as a complete workout for your upper body and to  increase your puls. Keep on reading, watch the YouTube-clip and then I’ll tell you a secret. 

 

Today I want to share with you a really easy workout.

You can do it in a chair, a wheelchair, on the floor or standing up. 

It’s good for your muscles in your belly, back, shoulders, neck and arms.

The focus is on doing the postures coordinating with your breaths.

If you want a workout that increases your puls: make the workout in a higher pace and do more repetitions.

The video is in Swedish so I’ll teach you some Swedish terms.

Swedish terms:

Andas in – breath in

Andas ut – breath out

delmoment 1 – part 1

delmoment 2 – part 2

 

These are the terms you need to know when watching this 12 minutes workout. The rest you can do if only watching my moves.

 

I just want to add that I’m having a terrible cold when filming, that’s why I sound like I do…

The secret

And my secret? I’m actually doing a mantra meditation. But without the words and singing. “Humee hum brahm hum” is the name of that mantra meditation. I’ve been doing that meditation for 40 days as a challenge together with others in a Facebookgroup lead by Sanna. The english translation of the song is “We are we and we are one”. That is a good thing to remember – we all belong together and what you do affects someone else. In a good way or in a bad way. Also you can see the message that you aren’t alone. Even if it feels like that due to COVID-19. But  hang in there; we will all be vaccinated in the future, we just need to hold out!!! 

Hope you can see the link to that mantra meditation.

Yoga as workout

Yes, that is what I’m sharing with you today! Yogamovements as a complete workout for your upper body and to  increase your puls. Keep on reading, watch the YouTube-clip and then I’ll tell you a secret. 

 

Today I want to share with you a really easy workout.

You can do it in a chair, a wheelchair, on the floor or standing up. 

It’s good for your muscles in your belly, back, shoulders, neck and arms.

The focus is on doing the postures coordinating with your breaths.

If you want a workout that increases your puls: make the workout in a higher pace and do more repetitions.

The video is in Swedish so I’ll teach you some Swedish terms.

Swedish terms:

Andas in – breath in

Andas ut – breath out

delmoment 1 – part 1

delmoment 2 – part 2

 

These are the terms you need to know when watching this 12 minutes workout. The rest you can do if only watching my moves.

 

I just want to add that I’m having a terrible cold when filming, that’s why I sound like I do…

The secret

And my secret? I’m actually doing a mantra meditation. But without the words and singing. “Humee hum brahm hum” is the name of that mantra meditation. I’ve been doing that meditation for 40 days as a challenge together with others in a Facebookgroup lead by Sanna. The english translation of the song is “We are we and we are one”. That is a good thing to remember – we all belong together and what you do affects someone else. In a good way or in a bad way. Also you can see the message that you aren’t alone. Even if it feels like that due to COVID-19. But  hang in there; we will all be vaccinated in the future, we just need to hold out!!! 

Hope you can see the link to that mantra meditation.

Incontinent fecal and/or urinary

HOW TO DEAL WITH BEING INCONTINENT

And why are you incontinent?

Intontinent

Being incontinent (not able to holding your urine of poo) is very important that you talk with your neurologist about. Either your doctor or your nurse. It’s necessary for you to bring up these problems because, as you probably know, it affects your quality of life especially your sexlife! You know how frustrating it is to go around and all the time have to fear that an ‘accident’ may occur when you are amongst others, no matter whether they’re strangers or not. Maybe you already ar using a sanitary napkin in your undies but if it comes 1 or 5 drops in them you maybe worries that it will smell if you can’t change the sanitary napkin at once? And lets argue that it is the stool that’s leaking or you can’t hold back from coming. Well, then it’s that smell your worrying about. At what if it has leaked out to your pants??? And there are so much the health care can help  you out with!

If your neurologist doesn’t know about your problems – they can’t help you.

 

My story

I thought I would share with you one of my most degrading and embarrassing stories. Yes, they’ve come to be many. But these stories mostly happened before my diagnosis, before I got the aids I needed. Of cause there have been stories after that, but not as many. Despite knowing that there are aids (I was a nurse in a ward where many had these sorts of issues…) I didn’t contact someone to be helped. It was rather long time in between of the accidents so I guess that’s why it never occurred to me that I needed some aids.

Maybe someone can recognize him or herself.

I sang in a choir that had it’s rehersals about 6-7 kilometres from my home. Many times, no matter the weather, I took the bus there and afterwards I walked home. I found that being so calming.

When I was waiting for the bus I felt that I needed to defecate. And if I turned back home I wouldn’t be able to get in time for the practice. Sitting on the bus I felt that I would really need to go when I got there. And having discust for public toilets it wasn’t a happy thought. I normally get constipated when our family have been on vacations where we’ve needed to do ‘number 2’ in a public toilet… So many times that the toilets have been far from clean.

The bus had driven about half the drive there. Then my bowels just emptied them self. Not just a little. Completely. Sure, I had

trousers but defecate on a bus seat! I felt so ashamed! I felt discusting! What should I do? I threw myself out of the bus hoping that it couldn’t be seen on the bus seat. Or on my trousers. The stool doesn’t stay on your buttock it’s being squeezed down towards your legs. Thankfully it was at a time when it was dark outside. But yet.

I was lucky again – I didn’t meet any of the other 40-50 choir members and thank goodness there are toilets close to the enterence, I didn’t need to pass by the room we sang in. Nobody got to know I’ve been there. In the toilet I wept while I was trying to clean myself up and my trousers. When I was sure that all members were in the choir room I sneaked out through the doors of the building. How I got home? I can’t remember that.

Your bodys nervous systems

Central Nervous System

I spoke a little about Central Nervous System, CNS, way back in my blog.

A short description about our CNS is that includes our brain and our spine. If, e.g., you break your back in the chest area – you want be able to move your body parts under that level.

If you don’t want to read about your nervous system;

The Peripheral Nervous System

In this system cranial nerves and spinal nerves are included. Every nerve consists of several thousand nerve fibers. Some of them are efferent, they go from your CNS to e.g. your hearts muscles, glands skeletal muscles. Others are afferent, they goes to your CNS. The last ones are also called sensory nerves. I’m not gonna write about all the connections and where they are, but just simple enough for, even me, to understand what I’m writing about our urinary tracts and function of our bowels. Later on.

I’ve made a VERY simple PDF about the peripheral nervous system Se här Maybe that makes it a little bit easier to follow along.

Somatic Nervous System

This is a system that we normally are in charge of. You decide to take a step – from our Motor cortex in our brain sends signals via nerve fibers to the muscles in our leg. This leads to you taking a step. All the nitty gritty in between your brain and a step is something a professional can talk about.

You were in control of what you wanted your body to do. But taking a step isn’t just involving one group of muscles. Beside your legs your back, stomach, maybe your arms needs to be involved for you being able to lift your leg without falling. And just to stand involves a lot of different groups of muscles. Don’t worry! If you decide to take a step your motor cortex will activate all the muscles needed for what you aim to do.

Autonomic Nervous system

This system doesn’t normally, have any control over smooth muscle tissues and they are highly controlled by reflexes. We aren’t aware of activities in these cells most of the time.

Under pressiure

When you are stressed or you need to run away from an angry mob or you’re about to climb Mount Everest this system leads to your inflow of air increases by your body telling itself that it needs to increase its’  breaths. Your body makes sure that it’ll get energy by digest glycogen and fat.  Another example of what your body will do in that pressing situation is to make your adrenal glands to excrete adrenalin. The adrenalin then activates a centra in your brain stem which leads to increased focus.

When relaxed
Every now and then we decide to rest. This system will then make sure that your bowel movements increases. That is why everyone says you ought to take a nap after dinner… The secretion to your stomach and bowels to the bowels can digest the food (or candy?) that you’ve stuffed into yourself. But how the body takes care of nutritions in your bowels and where they goes to – that is nothing I will talk about.
 
Back to the autonomic nervous systems actions when you rest. E.g. it will decrease your heart frequency and your blod pressure. And now we jump to the next subject.

Sensory Nervous System

Often time many of our sensory fibers are included in both the somatic and autonomic reflexes i.g. they are both conscious , and unconscious . The somatic nervous system takes care of your conscious decisions. The sensory information is sent to our cerebral cortex where it’s being read. Then it leads to you taking action.

The unconscious part of the sensory nervous system involve autonomic reflexes or autonomic reaction. This information won’t go to the cerebral cortex. These signals goes to motor cells, somatic or autonomic, in your spine or your brain stem. Your body will decide what action it needs to take.

MS and being incontinent

Being both urine and stool incontinent when having MS isn’t unusual. That’s because of the nervous system to our kidneys, bladder and urethra are the same as for our rectum and anal passage.

I’ve seen numbers saying that 2/3 of us with MS have some sort of problem with their bowels. In another source their saying that more than 50% of people with MS have some sort of bowel dysfunction.

 

I’ll describe a little about the problems that MS can cause our functions when it comes to urine and defecation and how. But first we’ll dive into how the urinary  tract and our defecation should work.

 

Intimacy, sexual contact, and incontinence - is it possible?

How sexy do you feel when you’re scared that your bladder or bowel will decide to leak during ‘the act’? This is a little bit more difficult for a woman considering that the penis (if you like men) will be put into you. That means that your bladder and your bowels will be ‘pushed’ from the inside. With other words – it’s a higher risk for a woman with dysfunctions will leak during sex than it is for men.

Having an overactive bladder or a stress incontinence is a higher risk for leakage during sex.

Some advices I’ve read is to

  • not drink within 2-3 hours before bedtime.
  • Double-pee: empty your bladder, wait some minutes and then go and pee again. This method is to empty the bladder as much as possible.
  • Pelvic training – you know the training you had to do after giving birth
  • Men with catheter need not fear. When erected tape the catheter to your pubic are. Then you can have sex as much as you want.
  • If fecal incontinent: use an anal plug.
  • Have a bed protection sheet.
  • Try new positions.
  • In-between foreplay and the act take a short peeing-break.
Wet dog

 

Short history lesson

Earlier, much earlier, renal insufficiency was a rather common cause of death amongst persons with MS. Thanks to medicine, more awareness to urinary difficulties, use of intermittent catheterazing, more efficient infection treatments that rate has decreased immensely. 

Become a bladder know-it-all

There’s a coordination between the muscles and the nervous system that makes us able to hold the urine or let go of it. Both our voluntary control system, i.e. the by our will controlled system (the somatic nervous system) and the system we can’t control (our autonomic nervous system) are involved when we urinate.

There’s a muscle of smooth tissue around the bladder and it’s called the Detrusor muscle.  When your bladder is being filled with urine from your kidneys the Detrusor muscle is being relaxed. The smooth muscle around the bladders exit and in the upper part of urethra are called the inner sphincter. It keeps closed as an effect of activity in sympathetic fibers (they are part of the unconscious autonomic nervous system) in your lower spine region. As long as the pressure in your bladder isn’t too much it inhibits the sphincter too loosen. 

In the lower part of the urethra there a  sphincter consisting of muscles under the control by our will.  Its called the outer sphincter. So even if your bladder and your inner sphincter says it’s time to fill the toilet you can, with your own free will decide that your outer sphincter is going to keep shut.

How much can a bladder  hold?

The wall in the urine bladder have receptors that can feel whether the bladder is full or empty and everything there in between. The receptors sends signals via the spine to your brain. And the brain makes you aware of your ‘need’. When a person healthy person begins to feel a need to urinate there’s about 250 ml (approx. 8,5 oz) of urine. When the bladder contains 350 ml (approx. 11,8 oz) the person is really ready to go to the bathroom. But a healthy person can have 400-500 ml (approx. 13,5-16,9 oz) before they go to the toilet. But when the bladder has reached its limits it will end up in your inner sphincter will open up with causes the outer sphincter to, by reflex, open up and you’re about to pee whether you’re in a long line in the store or in a toilet. A healthy person urinates 5-8 times a day. Zero times at night.

The important urinary tract shortly

So when you decide that it’s time to go the brain sends signals to the center in the bladder which leads to a contraction of your bladder and the urine presses against the sphincter muscles and the brain sends signals to the sphincter muscles to relax. Yes, it’s what I mentioned earlier but in other words.

Why small children are incompetent I mean incontinent...

Small children have empty their bladders due to how full they are. When their bladders reaches a certain level (don’t ask me about the amount of ml or oz there. Ask a professional…) their reflex system makes sure they’re emptying their bladders. 

Men & women; surprisingly not quite the same system

Mens sphincter muscles around the urethra above their prostate is not controlled by their own will, while the sphincter muscles under their prostate is. This gives men a higher risk of obstructions and leakage. Women  have a voluntary controlled sphincter muscle around their whole urethra. This makes womens’ sphincter muscles a little weaker which makes leakage more common amongst women.

 

This is one reason for us to train our muscles in our pelvic bottom. As long as you have some control over these muscles.

And you men out there: sitting down can do a lot when you’re trying to urinate.

Sorts of Urinary incontinence MS can cause

what does ms to your body?

The MS plaques affects the transmission and coordination of signals in your central and peripheral nervous system (your brain and your sacral nerves) and the Detrusor muscle around your bladder. Especially if the nerves in your spine are affected, it can lead to difficulties controlling your bladder. But there can be disturbances in many parts of your urinary system.

The commonality of disturbances in your urinary system

Thru my reading of several different MS associations and booklets about MS, I’ve found that about 70-80% of people with MS have some sort of problems with urination. But the problems can come and go; be worse at sometimes and at other times you don’t have any problems at all.

I’ve also read that between 10-25% had urination problems as a debut symptom. But that figure was only mentioned at one site, so the accuracy of this number haven’t been controlled by me.

Overactive bladder

-Frequenzy. You feel a need to emptying your bladder inspite of your bladder actually isn’t full. This can lead to a risk of leakage. Also, if we need to rush to the toilet often and your bladder always contains a small amount of urine, your bladder will get used to always holding a small amount. This will lead to your bladder telling you that you need to emptying it when it contains consistent decreasing amount. 

-Urgency. A feeling of ‘you need to go NOW’ and you may have a leakage before you are able to urinate.

-Nocturia: This is when you need to get up to emptying your bladder at night.  Ev internlänk till avsnitt åtgärder

Big no-no for you with an overactive bladder

Having a overactive bladder can make you avoid drinking water, coffee or whatever. But that is a big no-no! You need to get about 2 litres (about 33,8 oz) of fluids every day. But in some cases milk on your porridge, fluids from an orange or water melon, soup, coffee etc counts as fluid. To drink is vital for your body, not drinking will lead to all sorts of problems And if you don’t drink enough your bladder will get used to even smaller amount of urine. i.e. you’ll get even more problems if you suddenly decide to drink more than normal. (You know, a night in a bar can make you drink a little bit more that usual… Thanks to Covid this situation wont probably be a problem.)

Stress incontinent

Stress incontinens is when you can’t do heavy lifts, sneeze, cough, change position or similar without leaking urine.

Urinary retention

 

What it actually means is that you have problems starting to urinate or it can be difficulties emptying the bladder. A sign of having this kind of problem is that your urine spray (do you understand what I mean?) is very slim. You can feel that you have emptied your bladder when you actually have not. This makes you feel a need to urinate again just a short time later. It might feel as if you had an overactive bladder. This is why it’s important to do a full investigation by a doctor, nurse or a uroterapeut (this is the Swedish word for a nurse specialized in urination) of the reason behind your problems urinating.

The reason behind this can be that your bladders’ sphincter muscles may contract spontanously when you’re not done. The problem can also be due to your sphincter muscle isn’t opening when it’s time to urinate. This can happen when the  muscle around your urethra doesn’t relax. And if the muscle doesn’t relax, your bladder can’t emptying itself.

Damages urinary retention can cause

 Retained urine in your bladder when you can’t urinate causes pain when the bladder is full. An even more serious effect of this is  damages to your kidneys.

 Because your not able to emptying your bladder completely the urine left in there can lead to a growth of bacteria in your  bladder. I. e. you get an Urine Infection. This infection can spread up to your kidneys if your unlucky.

– UVI, läs mer här internlänk!!!!!  

Try at home if having an urinary retention problem

When you feel done urinating:

Different tricks works for different persons because we are individuals, not shaped from the same mold. And also take into account: depending on whether you are more or less tired affects what tricks might work.

Injury on your spine

Injury on your spine can make the bladder emptying itself by reflex. When the bladder contains about 200-300 ml (about 6,7- 10,1 oz) the sphincter muscle will no longer be able to resist the pressure from the bladder. 

How to get help for your incontinence

The doctor or nurse who takes care of you and your illness normally will most likely know if you also need a referral to gynecologist or if you need to see an urologist doctor or nurse. To get in contact with one of them you’ll probably need to ask your doctor or nurse (the ones taking care of your ‘normal’ illness) for a referral from them to the urologist. This is to decide what’s the cause of and what sort of incontinence you have and what kind of aid you need.

What you can start doing at once: pelvic training. If you can’t feel anything at all, control the pelvic muscles at all, of cause this might not be for you.

How to prepare before your visit with your doctor or nurse

To have a diary where you day by day have written about how often you need to urinate and the hour you need to is good. It’s even better if you know how much you urinate every time and if you feel like you’ve emptied your bladder or not. What color is your urine and how does it smell? The more information you can give, the better. How long does it take for you to urinate?

This diary makes it easier for your doctor/nurse to know what kind of help you need. And by being able to show your doctor/nurse the diary it will save you from one step you probably would need to take. The doctors needs the information of the amount of urine you urinate/24 hours, how much you urinate every time, and how long it takes you to empty your bladder.

The investigation they probably are gonna make

Exclude alternative diagnosis for problems holding your urine. Sometimes the problem behind an overactive bladder can be constipation. There can be stool in your rectum or anus that puts pressure on your bladder.

Infection in your urinary tracts can make it difficult to hold your urine  due to the irritation in them.

Maybe you have some other disorders that makes you drink TOO much. Exampels can be diabetes or chronic heart failure.

other examinations

The most probable first step (if you have problems with urinating) is letting you urinate and then see if you have urine left in your bladder or not afterward. This is a really easy to do. Probably they want you to urinate in a cup or something, to measure the amount of urine. Then they’ll just do an ultrasound with a probe over your bladder. To see if there are urine left in the bladder. Sometimes they can to it at the reception you belong to when you meet the doctor/nurse that normally takes care of your illness. But they’ll probably want to do this for  a couple of times.

Examination of your kidneys function can also be something they want to do. By x-ray and/or blodsamples.

If you early on in your MS have difficult problems with your urination they may contact an urologist to do an examination with a camera of your bladder. This examination is like the examination you do when having problems with your stomach: it’s a camera on a hose that they put through your throat to your stomach. But the hose they put through your urethra is much smaller.

If you’re a man the doctor will most likely examine your prostate to see that it isn’t enlarged.

 

What kind of help do you need and from where do you get it

The goal with every treatment or aids they’ll give to you are focused on protecting the kidneys function.

Aids

In Sweden we contact our distrikt nurse in our health centre (Vårdcentral) to get aids like sanitary napkins (binda) or grownup napkins (blöja). The distrikt nurse will help you try out what works for you. It also depends on if you’re both is incontinent with feces or urine or either or. The sanitary napkins and grownup napkins doesn’t need to show a big bulk on your ass. The napkins now aren’t as big as we many times believes. The small ones absorbs much more than we think.

If problems emptying the bladder you can use something called intermittent catheter. Easily described it’s a like a straw you use on yourself. You insert it through the urethra all the way up to the bladder. It’s not painful, ok for some it may be, but I don’t have any in my ‘MS group’ that think it’s painful. They’ve said that it’s something you get used to do. Easily. 

The link down below takes you to Coloplast information about catheterizing.

Medicine

There are different sorts of medicines that may help you. There are e.g. different kind of pills and if you have an overactive bladder and leakage, they can inject botox into the wall of your bladder. If your e.g. are going to make a trip there are medicine that you can take, when needed, to prevent urinating during the trip. In Swedish the substance is called ‘Desmopressin’.

Surgery

There’s a stimulator they can operate into you that focuses on the nerves controlling your  bladder to help it work as it’s supposed to. It stimulates your sacral nerves. See picture down below. Link to the website

In cases where they need to focus on saving the function of the kidneys they can make a new bladder from a part of your small intestines. Sometimes they make a variation that empties the urine in a bag on the right side of your body. Kind of looks like a stoma they do if you have issues with your bowels. But the big difference that this baggie will include urine – not poo…  

Another version of this “new bladder” is that you can empty it with a catheter. But instead of you putting the catheter in your bladder you put the catheter into that stoma.

I won’t get  more into those surgeries above and there are also other surgical moves the doctors can make. But I won’t go in to them because they aren’t common. 

InterStim TM

You may need some lifestyle changes

According to Anna Martinson de Cándenas (www.multipleskleros.nu  a Swedish site for MS) it’s not uncommon that we drink Too much. She also says that you’ll first need to make sure that you don’t have any problems defecating since constipation makes it difficult to help out with a overactive bladder. She also points out that the nicotine in cigarettes tends to affect the bladder so it becomes overactive.

Infection in your urinary tracts

  • Depending of the urinary difficulties you have aren’t able to fully emptying your bladder the urine in your bladder can be a lovely place for bacterias to grow.
  • Due to the close approximation to your rear end it’s rather easy for bacterias from your stool to take their cain and walk over to your urethra. Especially if you are fecal incontinent too.
  • Maybe you have a permanent catheter in your urinary tracts and that can be a sidewalk for bacterias. Modern catheters are better on keeping the bacterias out and that goes with the intermittent catheters too. 
  • wash your genitals vid soap friendly for that are of your body. It’s important that you change the pH-balance which in that area are about pH 4. The soap is therefor required to have a pH below 4.
  • If you washes your genitals too often or uses the wrong kind of soap it kan lead to your mucous membranes dries out and the skin down there gets dry. That makes an attractive place for bacterias who are looking for a place to settle down. And when they settled down next to your urethra they think it’s ok to invade the urethra too. The dry mucous membrane will turn out to be really irritated, and pissed off membranes aren’t easy to share body with. 

You can have one of these or all of these

  • If your frequency of urgency increases it can be a sign of infection.
  • Your urine gets smelly.
  • Your urine is impure/muddy
  • Pain or burning sensation when urinating.
  • Pain in your lower belly.
  • Fever
  • Pain over your kidneys ( the pain is situated on your back approximately by the lower ribs). 

You need to contact your health center to check your urine for bacterias! It’s really important that you get treatment if it is an infection because infections in your urinary tracts can give you a pseudo relapse. But they will have a look at you and as you if having problems urinating that can be related to infection. Because it’s not always they want to treat bacterias due to the risk of getting multi-resistant of antibiotics. Persons who uses intermittent catheterizing can many times have a small amount of bacterias in their urinary tracts.

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HOW DEFECATION WORKS

When we eat our stomach expands. This leads to more protracted contractions in our large intestine that pushes the content in de lower part of your large intestine to your rectum. Normally it takes 1-3 days for the food to go from your mouth to the toilet.

When the content is pushed into your rectum sensory cells are stimulated by the pressure. It leads to defecation reflex is triggered – you feel a need to defecate. The procedure so far is under the part of your nervous system that you can’t control. But the outer anal sphincter is something you can control. If you don’t want to take a dump you don’t.

When you decide that it’s time to poo/defecate/take a shit or what ever you prefer calling this shit (hahaha – I’m so incredibly funny. According to me) your muscles in your chest and abdomen cooperates together with you closing your windpipe. This leads to an increased pressure in your abdominal cavity that forward the pressure  to your large intestine and rectum

Have you ever noticed that you close your mouth and pushes the air down into your chest and that you flex the muscles in your abdomen when defecating? I laughed of recognition when I red that.

MS AND BOWELS AND DEFECATION PROBLEMS

The most common bowel dysfunction if you have MS is being constipated Some somewhere between 43-53 % of people with MS are suffering from constipation. According to MSsällskapet in Sweden the cause behind problems with your bowels are lesser known.  They point out that the bowels mostly have their own nervous system that is being being inhibited or stimulated by your autonomic nervous system.  

When you have a damage in your Central Nervous System this system are likely affected negativ. Also the mechanism including those nerves we need to rely on when it comes to defecate are likely effected. Either the  stimuli of rectum or control of the sphincters or both.

Difficulties emptying the rectum can cause constipation. And problems storing the stool in your rectum (as you do before you are able to sit down on a toilet) can cause fecal incontinence. 

It’s not uncommon that a person with MS have difficulties with both constipation and fecal incontinence.

Fecal incontinence

Studying people with MS they find that those with fecal incontinence  haven’t got the strength as others in the by your own will controlled sphincter. On MSsällskapets page they mention a study by Nordenbo et al  where they find an association between worsened or a complete loss of the reflex in rectum and fecal incontinens.

The feeling of ‘it’s time to go’ can be deminagedt. And if you can’t feel that your rectum is full it will likely lead to you leaking stool.

Constipation

They’ve seen that persons with MS has changes in their activity in their Colon and the process to get the food through the colon takes longer time. If you then don’t drink enough, have a low ability to be active and some sorts of medicine you can start taking medicines agains constipation or eat tons of fibers to keep the constipation away.

A disfunction in your rectum also contributes to good, old constipation. 

How to find the reason behind your defecation problems

There are several ways to investigate the bowels and how they do or don’t work.  

Fecal incontinence without problems with constipation

According to the MS Sällskapet the doctor should first questioning if there can be another colon or rectal illness too. 

The doctor can also ask for investigation of the pressure in rectum and measurement of the sphincter contraction.

Constipation and fecal incontinens

There are several ways to study this. But I will just mention the investigation where you swallow a marker that then is being followed during several x-rays until you’ve pooped it out. Tada! Now they can say if your bowels movements are slow and if their extra slow or fast in one or another part of  your bowels.

How to treat dysfunctional bowels

Since mine are treating me with no respect what so ever, I do not feel like treating them well…

Just kidding. Actually I’m in the group that sometimes are fecal incontinent, never constipated, rather the other way around… Not very fun that either.

Where to begin

No matter what your bowel-problem you’ve may got you can begin with making sure that your body posture is facilitating your defecation. Try to sit so you supporting your thighs on the seat. Then your knees should be in a 45-90 degrees angle compared to your upper body. This means that you probably need to have something under your feet. I use the same stool as the children stood on when they were small and didn’t reach the sink. (From IKEA, of cause.) Or you can try just leaning forwards for a start if you don’t have a stool of some sort. (I’m not talking about the ‘defecation stool’…) See picture above.

Medication free treatment when constipated

  • When feeling the urge to defecate – go. Don’t wait.
  • Don’t stress when your on the toilet. Bring a book or listen to a book. Watch YouTube or netflix through your phone or iPad. Take it easy and tell your family or roommate that you want to be alone. 
  • Move as much as you can. I know that is easier said than done, but if possible. Drink a lot during daytime (you don’t want to run to pee during nighttime….)
  • Eat food rich of fibers. There are fruits, veggies, seeds, fish, meat, birds, natural are rich of fibers. Use fats as oliveoil, cream and butter. 
  • Since intake of food stimulates the bowels one recommendation is to regularly go to the toilet after eating.
  • You can also try to gently push perineum, the area between urethra and anus.
  • This doesn’t feel funny at all but, low and behold, it works! Stimulation of the outer sphincter. Use gloves and put some lubricant on one of the fingers. Stick that finger up your butt about 1-2 cm (this time you have to convert yourselves) and turn it around like a circle (your sphincter is like a circle) whilst you have put a small pressure against the wall. You don’t need lubricant or gloves, unless you have hurting hemorrhoids or if you easily bleed. Put some paper over your finger instead of gloves. If needed you can use an ointment or vaseline on the paper. The rest you need to to is what I wrote above. 
  • Manually picking the stool from the rectum can be used in difficult cases. But rest assured – this is a method that really avoided as long as possible. Not because the nursing staff are grossed out, you should only know how much we love doing gross stuff. Yes, I’m not serious at all. It’s avoided since if you use this method regularly, there’s a risk of damaging the sphincter.
  • Don’t bear down/push/press (what ever’s the right term in english…). Use your abdominal muscles –  open your mouth and take a breath into your belly. Breathing with your belly can be easier if you open your mouth and think that your letting your stomach point forwards as much as possible. This makes the pelvic muscle to relax.
  • When do you normally defecate during the day? Many of us defecate about the same time every day. Try to keep on doing that. Recommendations are that you try do go after breakfast. Sit for a longer moment. This method didn’t work out for me but you are lucky – I’m not the norm.

 

  • Medication free treatment for you with fecal incontinence and/or you having trouble emptying a full rectum
  • avoid chewing gum, avoid suger and sweets, don’t drink sparkling beverages, avoid nicotine, avoid spicy spices, avoid fatty foods and coffee.
  • Manually picking the stool from the rectum can be used in difficult cases. But rest assured – this is a method that really avoided as long as possible. Not because the nursing staff are grossed out, you should only know how much we love doing gross stuff. Yes, I’m not serious at all. It’s avoided since if you use this method regularly, there’s a risk of damaging the sphincter.
  • The finger-in-your-ass-tips mentioned under medication free treatment of obstipation can work here too.
  • There’s something called anal plug. It actually works! I used this aid when we were abroad so I was able to swim in the ocean. My experience is that it works as long as you don’t have a really big diarrhea problem. It can be that I would have needed a bigger size of the plug. Maybe it leaked because I used some lubricate to insert it. I link the one sort that I  have tried.
  • What you can start doing at once: pelvic training. If you can’t feel anything at all, control the pelvic muscles at all, of cause this might not be for you.
  • There are now several sanitary napkins that removes the smell from leaking stool. 
  • Don’t wash your self too often. Dry and clean your anal very gently to prevent irritation of your skin and wounds.
  • Don’t have tight undies. Preferably made of cotton. 
  • You can have a cotton pad against your anus in your pants to prevent moist from destroying your skin there.

Medications for constipation

  • Your doctor with helping you out finding what works best for you. Many times the pharmacists in your pharmacy what medicine would be best for you. If you don’t want to wait to a doctors appointment to get laxatives. But you need to be sure that it’s constipation that is your problem. 
  • Bulking aids
  • It’s not totally uncommon that you with MS needs to use enemas. Here’s a link to show you one distributors enema system. But that is something your doctor should decide. Using enemas when your problem is something else can be damaging for your bowels in worst of cases. How frequently you need it can probably be decided by looking at your defecation habits when you didn’t have MS. Not all people needs to do ‘number 2’ everyday. But the frequency also needs to take the reason to why you need enema into account.
  • Micro enemas (medicine)

Medicine for fecal incontinent 

  • Bulking aids can be used. This increases the volume and consistent of the stool which makes it easier for the part of the system that is under the control by our will.

Operation against difficult fecal incontinence

  • Remember the InterStim, the sacral nerve stimulator, I mentioned under surgical moves to take care of bladder issues? You can use that machine to stimulate your nerves to work also for bowel incontinence. Link here.
  • In difficult cases of incontinence a ostomi can be made from the last part of the colon. A so called sigmoid colon ostomi. Easily explained is that they through surgery cuts the part of the bowels in Sigmoid colon and draw it through  the skin and makes like a new anal opening there on the belly. And then you ware a bag over it to collect the stool in. This bag you can change or emptying when needed. Explaining a ostomi is something that needs it own post, so I stop explaining it here.
Peristeen (Coloplast) anal plug
The anal plug isn't big but it takes some time before you've learned to insert it without causing discomfort

important

If you have an compromised immun system, have medication or illness that makes you bleed easily,  bowel surgery, rectal prolaps hemorrhoids etc you really need to ask your doctor before you try enema or other medical solutions that include you sticking something in your rectum. My summation is – ASK YOUR DOCTOR BEFORE PUTTING ANYTHING IN YOUR RECTUM!

You can read more about enema here.

InterStim TM

Disclaimer

I’s always your doctor what sort of aids you can receive from them. It’s different around the world and it differ among regions in the same country. With this post I want you to know that incontinenc, urine or bowel, is a REAL problem many suffers from. Not only persons with MS, there are so many out there who shares the same issue. If you know someone with the same problem – please feel free to share this post.

If any questions, contact me. I think its easier for you to mail me than adding a comment. I wish I’ve helped you with this post, in any sort or way!!!

Love to you all!

Resources

www.coloplast.se / www.coloplast.se

https://docplayer.se/5664296-En-bok-om-en-bok-om-ms.html

www.mscrossroads.org

www.msfonden.se

www.ms-gateway.com


www.msif.org

www.mssallskapet.se

www.mssociety.org.uk

www.mswebpals.org

www.multipelskleros.nu

www.wellspect.se

www.1177.se

HOW TO DEAL WITH BEING INCONTINENT

And why are you incontinent?

Intontinent

Being incontinent (not able to holding your urine of poo) is very important that you talk with your neurologist about. Either your doctor or your nurse. It’s necessary for you to bring up these problems because, as you probably know, it affects your quality of life especially your sexlife! You know how frustrating it is to go around and all the time have to fear that an ‘accident’ may occur when you are amongst others, no matter whether they’re strangers or not. Maybe you already ar using a sanitary napkin in your undies but if it comes 1 or 5 drops in them you maybe worries that it will smell if you can’t change the sanitary napkin at once? And lets argue that it is the stool that’s leaking or you can’t hold back from coming. Well, then it’s that smell your worrying about. At what if it has leaked out to your pants??? And there are so much the health care can help  you out with!

If your neurologist doesn’t know about your problems – they can’t help you.

 

My story

I thought I would share with you one of my most degrading and embarrassing stories. Yes, they’ve come to be many. But these stories mostly happened before my diagnosis, before I got the aids I needed. Of cause there have been stories after that, but not as many. Despite knowing that there are aids (I was a nurse in a ward where many had these sorts of issues…) I didn’t contact someone to be helped. It was rather long time in between of the accidents so I guess that’s why it never occurred to me that I needed some aids.

Maybe someone can recognize him or herself.

I sang in a choir that had it’s rehersals about 6-7 kilometres from my home. Many times, no matter the weather, I took the bus there and afterwards I walked home. I found that being so calming.

When I was waiting for the bus I felt that I needed to defecate. And if I turned back home I wouldn’t be able to get in time for the practice. Sitting on the bus I felt that I would really need to go when I got there. And having discust for public toilets it wasn’t a happy thought. I normally get constipated when our family have been on vacations where we’ve needed to do ‘number 2’ in a public toilet… So many times that the toilets have been far from clean.

The bus had driven about half the drive there. Then my bowels just emptied them self. Not just a little. Completely. Sure, I had

trousers but defecate on a bus seat! I felt so ashamed! I felt discusting! What should I do? I threw myself out of the bus hoping that it couldn’t be seen on the bus seat. Or on my trousers. The stool doesn’t stay on your buttock it’s being squeezed down towards your legs. Thankfully it was at a time when it was dark outside. But yet.

I was lucky again – I didn’t meet any of the other 40-50 choir members and thank goodness there are toilets close to the enterence, I didn’t need to pass by the room we sang in. Nobody got to know I’ve been there. In the toilet I wept while I was trying to clean myself up and my trousers. When I was sure that all members were in the choir room I sneaked out through the doors of the building. How I got home? I can’t remember that.

Your bodys nervous systems

Central Nervous System

I spoke a little about Central Nervous System, CNS, way back in my blog.

A short description about our CNS is that includes our brain and our spine. If, e.g., you break your back in the chest area – you want be able to move your body parts under that level.

If you don’t want to read about your nervous system;

The Peripheral Nervous System

In this system cranial nerves and spinal nerves are included. Every nerve consists of several thousand nerve fibers. Some of them are efferent, they go from your CNS to e.g. your hearts muscles, glands skeletal muscles. Others are afferent, they goes to your CNS. The last ones are also called sensory nerves. I’m not gonna write about all the connections and where they are, but just simple enough for, even me, to understand what I’m writing about our urinary tracts and function of our bowels. Later on.

I’ve made a VERY simple PDF about the peripheral nervous system Se här Maybe that makes it a little bit easier to follow along.

Somatic Nervous System

This is a system that we normally are in charge of. You decide to take a step – from our Motor cortex in our brain sends signals via nerve fibers to the muscles in our leg. This leads to you taking a step. All the nitty gritty in between your brain and a step is something a professional can talk about.

You were in control of what you wanted your body to do. But taking a step isn’t just involving one group of muscles. Beside your legs your back, stomach, maybe your arms needs to be involved for you being able to lift your leg without falling. And just to stand involves a lot of different groups of muscles. Don’t worry! If you decide to take a step your motor cortex will activate all the muscles needed for what you aim to do.

Autonomic Nervous system

This system doesn’t normally, have any control over smooth muscle tissues and they are highly controlled by reflexes. We aren’t aware of activities in these cells most of the time.

Under pressiure

When you are stressed or you need to run away from an angry mob or you’re about to climb Mount Everest this system leads to your inflow of air increases by your body telling itself that it needs to increase its’  breaths. Your body makes sure that it’ll get energy by digest glycogen and fat.  Another example of what your body will do in that pressing situation is to make your adrenal glands to excrete adrenalin. The adrenalin then activates a centra in your brain stem which leads to increased focus.

When relaxed
Every now and then we decide to rest. This system will then make sure that your bowel movements increases. That is why everyone says you ought to take a nap after dinner… The secretion to your stomach and bowels to the bowels can digest the food (or candy?) that you’ve stuffed into yourself. But how the body takes care of nutritions in your bowels and where they goes to – that is nothing I will talk about.
 
Back to the autonomic nervous systems actions when you rest. E.g. it will decrease your heart frequency and your blod pressure. And now we jump to the next subject.

Sensory Nervous System

Often time many of our sensory fibers are included in both the somatic and autonomic reflexes i.g. they are both conscious , and unconscious . The somatic nervous system takes care of your conscious decisions. The sensory information is sent to our cerebral cortex where it’s being read. Then it leads to you taking action.

The unconscious part of the sensory nervous system involve autonomic reflexes or autonomic reaction. This information won’t go to the cerebral cortex. These signals goes to motor cells, somatic or autonomic, in your spine or your brain stem. Your body will decide what action it needs to take.

MS and being incontinent

Being both urine and stool incontinent when having MS isn’t unusual. That’s because of the nervous system to our kidneys, bladder and urethra are the same as for our rectum and anal passage.

I’ve seen numbers saying that 2/3 of us with MS have some sort of problem with their bowels. In another source their saying that more than 50% of people with MS have some sort of bowel dysfunction.

 

I’ll describe a little about the problems that MS can cause our functions when it comes to urine and defecation and how. But first we’ll dive into how the urinary  tract and our defecation should work.

 

Intimacy, sexual contact, and incontinence - is it possible?

How sexy do you feel when you’re scared that your bladder or bowel will decide to leak during ‘the act’? This is a little bit more difficult for a woman considering that the penis (if you like men) will be put into you. That means that your bladder and your bowels will be ‘pushed’ from the inside. With other words – it’s a higher risk for a woman with dysfunctions will leak during sex than it is for men.

Having an overactive bladder or a stress incontinence is a higher risk for leakage during sex.

Some advices I’ve read is to

  • not drink within 2-3 hours before bedtime.
  • Double-pee: empty your bladder, wait some minutes and then go and pee again. This method is to empty the bladder as much as possible.
  • Pelvic training – you know the training you had to do after giving birth
  • Men with catheter need not fear. When erected tape the catheter to your pubic are. Then you can have sex as much as you want.
  • If fecal incontinent: use an anal plug.
  • Have a bed protection sheet.
  • Try new positions.
  • In-between foreplay and the act take a short peeing-break.
Wet dog

 

Short history lesson

Earlier, much earlier, renal insufficiency was a rather common cause of death amongst persons with MS. Thanks to medicine, more awareness to urinary difficulties, use of intermittent catheterazing, more efficient infection treatments that rate has decreased immensely. 

Become a bladder know-it-all

There’s a coordination between the muscles and the nervous system that makes us able to hold the urine or let go of it. Both our voluntary control system, i.e. the by our will controlled system (the somatic nervous system) and the system we can’t control (our autonomic nervous system) are involved when we urinate.

There’s a muscle of smooth tissue around the bladder and it’s called the Detrusor muscle.  When your bladder is being filled with urine from your kidneys the Detrusor muscle is being relaxed. The smooth muscle around the bladders exit and in the upper part of urethra are called the inner sphincter. It keeps closed as an effect of activity in sympathetic fibers (they are part of the unconscious autonomic nervous system) in your lower spine region. As long as the pressure in your bladder isn’t too much it inhibits the sphincter too loosen. 

In the lower part of the urethra there a  sphincter consisting of muscles under the control by our will.  Its called the outer sphincter. So even if your bladder and your inner sphincter says it’s time to fill the toilet you can, with your own free will decide that your outer sphincter is going to keep shut.

How much can a bladder  hold?

The wall in the urine bladder have receptors that can feel whether the bladder is full or empty and everything there in between. The receptors sends signals via the spine to your brain. And the brain makes you aware of your ‘need’. When a person healthy person begins to feel a need to urinate there’s about 250 ml (approx. 8,5 oz) of urine. When the bladder contains 350 ml (approx. 11,8 oz) the person is really ready to go to the bathroom. But a healthy person can have 400-500 ml (approx. 13,5-16,9 oz) before they go to the toilet. But when the bladder has reached its limits it will end up in your inner sphincter will open up with causes the outer sphincter to, by reflex, open up and you’re about to pee whether you’re in a long line in the store or in a toilet. A healthy person urinates 5-8 times a day. Zero times at night.

The important urinary tract shortly

So when you decide that it’s time to go the brain sends signals to the center in the bladder which leads to a contraction of your bladder and the urine presses against the sphincter muscles and the brain sends signals to the sphincter muscles to relax. Yes, it’s what I mentioned earlier but in other words.

Why small children are incompetent I mean incontinent...

Small children have empty their bladders due to how full they are. When their bladders reaches a certain level (don’t ask me about the amount of ml or oz there. Ask a professional…) their reflex system makes sure they’re emptying their bladders. 

Men & women; surprisingly not quite the same system

Mens sphincter muscles around the urethra above their prostate is not controlled by their own will, while the sphincter muscles under their prostate is. This gives men a higher risk of obstructions and leakage. Women  have a voluntary controlled sphincter muscle around their whole urethra. This makes womens’ sphincter muscles a little weaker which makes leakage more common amongst women.

 

This is one reason for us to train our muscles in our pelvic bottom. As long as you have some control over these muscles.

And you men out there: sitting down can do a lot when you’re trying to urinate.

Sorts of Urinary incontinence MS can cause

what does ms to your body?

The MS plaques affects the transmission and coordination of signals in your central and peripheral nervous system (your brain and your sacral nerves) and the Detrusor muscle around your bladder. Especially if the nerves in your spine are affected, it can lead to difficulties controlling your bladder. But there can be disturbances in many parts of your urinary system.

The commonality of disturbances in your urinary system

Thru my reading of several different MS associations and booklets about MS, I’ve found that about 70-80% of people with MS have some sort of problems with urination. But the problems can come and go; be worse at sometimes and at other times you don’t have any problems at all.

I’ve also read that between 10-25% had urination problems as a debut symptom. But that figure was only mentioned at one site, so the accuracy of this number haven’t been controlled by me.

Overactive bladder

-Frequenzy. You feel a need to emptying your bladder inspite of your bladder actually isn’t full. This can lead to a risk of leakage. Also, if we need to rush to the toilet often and your bladder always contains a small amount of urine, your bladder will get used to always holding a small amount. This will lead to your bladder telling you that you need to emptying it when it contains consistent decreasing amount. 

-Urgency. A feeling of ‘you need to go NOW’ and you may have a leakage before you are able to urinate.

-Nocturia: This is when you need to get up to emptying your bladder at night.  Ev internlänk till avsnitt åtgärder

Big no-no for you with an overactive bladder

Having a overactive bladder can make you avoid drinking water, coffee or whatever. But that is a big no-no! You need to get about 2 litres (about 33,8 oz) of fluids every day. But in some cases milk on your porridge, fluids from an orange or water melon, soup, coffee etc counts as fluid. To drink is vital for your body, not drinking will lead to all sorts of problems And if you don’t drink enough your bladder will get used to even smaller amount of urine. i.e. you’ll get even more problems if you suddenly decide to drink more than normal. (You know, a night in a bar can make you drink a little bit more that usual… Thanks to Covid this situation wont probably be a problem.)

Stress incontinent

Stress incontinens is when you can’t do heavy lifts, sneeze, cough, change position or similar without leaking urine.

Urinary retention

 

What it actually means is that you have problems starting to urinate or it can be difficulties emptying the bladder. A sign of having this kind of problem is that your urine spray (do you understand what I mean?) is very slim. You can feel that you have emptied your bladder when you actually have not. This makes you feel a need to urinate again just a short time later. It might feel as if you had an overactive bladder. This is why it’s important to do a full investigation by a doctor, nurse or a uroterapeut (this is the Swedish word for a nurse specialized in urination) of the reason behind your problems urinating.

The reason behind this can be that your bladders’ sphincter muscles may contract spontanously when you’re not done. The problem can also be due to your sphincter muscle isn’t opening when it’s time to urinate. This can happen when the  muscle around your urethra doesn’t relax. And if the muscle doesn’t relax, your bladder can’t emptying itself.

Damages urinary retention can cause

 Retained urine in your bladder when you can’t urinate causes pain when the bladder is full. An even more serious effect of this is  damages to your kidneys.

 Because your not able to emptying your bladder completely the urine left in there can lead to a growth of bacteria in your  bladder. I. e. you get an Urine Infection. This infection can spread up to your kidneys if your unlucky.

– UVI, läs mer här internlänk!!!!!  

Try at home if having an urinary retention problem

When you feel done urinating:

Different tricks works for different persons because we are individuals, not shaped from the same mold. And also take into account: depending on whether you are more or less tired affects what tricks might work.

Injury on your spine

Injury on your spine can make the bladder emptying itself by reflex. When the bladder contains about 200-300 ml (about 6,7- 10,1 oz) the sphincter muscle will no longer be able to resist the pressure from the bladder. 

How to get help for your incontinence

The doctor or nurse who takes care of you and your illness normally will most likely know if you also need a referral to gynecologist or if you need to see an urologist doctor or nurse. To get in contact with one of them you’ll probably need to ask your doctor or nurse (the ones taking care of your ‘normal’ illness) for a referral from them to the urologist. This is to decide what’s the cause of and what sort of incontinence you have and what kind of aid you need.

What you can start doing at once: pelvic training. If you can’t feel anything at all, control the pelvic muscles at all, of cause this might not be for you.

How to prepare before your visit with your doctor or nurse

To have a diary where you day by day have written about how often you need to urinate and the hour you need to is good. It’s even better if you know how much you urinate every time and if you feel like you’ve emptied your bladder or not. What color is your urine and how does it smell? The more information you can give, the better. How long does it take for you to urinate?

This diary makes it easier for your doctor/nurse to know what kind of help you need. And by being able to show your doctor/nurse the diary it will save you from one step you probably would need to take. The doctors needs the information of the amount of urine you urinate/24 hours, how much you urinate every time, and how long it takes you to empty your bladder.

The investigation they probably are gonna make

Exclude alternative diagnosis for problems holding your urine. Sometimes the problem behind an overactive bladder can be constipation. There can be stool in your rectum or anus that puts pressure on your bladder.

Infection in your urinary tracts can make it difficult to hold your urine  due to the irritation in them.

Maybe you have some other disorders that makes you drink TOO much. Exampels can be diabetes or chronic heart failure.

other examinations

The most probable first step (if you have problems with urinating) is letting you urinate and then see if you have urine left in your bladder or not afterward. This is a really easy to do. Probably they want you to urinate in a cup or something, to measure the amount of urine. Then they’ll just do an ultrasound with a probe over your bladder. To see if there are urine left in the bladder. Sometimes they can to it at the reception you belong to when you meet the doctor/nurse that normally takes care of your illness. But they’ll probably want to do this for  a couple of times.

Examination of your kidneys function can also be something they want to do. By x-ray and/or blodsamples.

If you early on in your MS have difficult problems with your urination they may contact an urologist to do an examination with a camera of your bladder. This examination is like the examination you do when having problems with your stomach: it’s a camera on a hose that they put through your throat to your stomach. But the hose they put through your urethra is much smaller.

If you’re a man the doctor will most likely examine your prostate to see that it isn’t enlarged.

 

What kind of help do you need and from where do you get it

The goal with every treatment or aids they’ll give to you are focused on protecting the kidneys function.

Aids

In Sweden we contact our distrikt nurse in our health centre (Vårdcentral) to get aids like sanitary napkins (binda) or grownup napkins (blöja). The distrikt nurse will help you try out what works for you. It also depends on if you’re both is incontinent with feces or urine or either or. The sanitary napkins and grownup napkins doesn’t need to show a big bulk on your ass. The napkins now aren’t as big as we many times believes. The small ones absorbs much more than we think.

If problems emptying the bladder you can use something called intermittent catheter. Easily described it’s a like a straw you use on yourself. You insert it through the urethra all the way up to the bladder. It’s not painful, ok for some it may be, but I don’t have any in my ‘MS group’ that think it’s painful. They’ve said that it’s something you get used to do. Easily. 

The link down below takes you to Coloplast information about catheterizing.

Medicine

There are different sorts of medicines that may help you. There are e.g. different kind of pills and if you have an overactive bladder and leakage, they can inject botox into the wall of your bladder. If your e.g. are going to make a trip there are medicine that you can take, when needed, to prevent urinating during the trip. In Swedish the substance is called ‘Desmopressin’.

Surgery

There’s a stimulator they can operate into you that focuses on the nerves controlling your  bladder to help it work as it’s supposed to. It stimulates your sacral nerves. See picture down below. Link to the website

In cases where they need to focus on saving the function of the kidneys they can make a new bladder from a part of your small intestines. Sometimes they make a variation that empties the urine in a bag on the right side of your body. Kind of looks like a stoma they do if you have issues with your bowels. But the big difference that this baggie will include urine – not poo…  

Another version of this “new bladder” is that you can empty it with a catheter. But instead of you putting the catheter in your bladder you put the catheter into that stoma.

I won’t get  more into those surgeries above and there are also other surgical moves the doctors can make. But I won’t go in to them because they aren’t common. 

InterStim TM

You may need some lifestyle changes

According to Anna Martinson de Cándenas (www.multipleskleros.nu  a Swedish site for MS) it’s not uncommon that we drink Too much. She also says that you’ll first need to make sure that you don’t have any problems defecating since constipation makes it difficult to help out with a overactive bladder. She also points out that the nicotine in cigarettes tends to affect the bladder so it becomes overactive.

Infection in your urinary tracts

  • Depending of the urinary difficulties you have aren’t able to fully emptying your bladder the urine in your bladder can be a lovely place for bacterias to grow.
  • Due to the close approximation to your rear end it’s rather easy for bacterias from your stool to take their cain and walk over to your urethra. Especially if you are fecal incontinent too.
  • Maybe you have a permanent catheter in your urinary tracts and that can be a sidewalk for bacterias. Modern catheters are better on keeping the bacterias out and that goes with the intermittent catheters too. 
  • wash your genitals vid soap friendly for that are of your body. It’s important that you change the pH-balance which in that area are about pH 4. The soap is therefor required to have a pH below 4.
  • If you washes your genitals too often or uses the wrong kind of soap it kan lead to your mucous membranes dries out and the skin down there gets dry. That makes an attractive place for bacterias who are looking for a place to settle down. And when they settled down next to your urethra they think it’s ok to invade the urethra too. The dry mucous membrane will turn out to be really irritated, and pissed off membranes aren’t easy to share body with. 

You can have one of these or all of these

  • If your frequency of urgency increases it can be a sign of infection.
  • Your urine gets smelly.
  • Your urine is impure/muddy
  • Pain or burning sensation when urinating.
  • Pain in your lower belly.
  • Fever
  • Pain over your kidneys ( the pain is situated on your back approximately by the lower ribs). 

You need to contact your health center to check your urine for bacterias! It’s really important that you get treatment if it is an infection because infections in your urinary tracts can give you a pseudo relapse. But they will have a look at you and as you if having problems urinating that can be related to infection. Because it’s not always they want to treat bacterias due to the risk of getting multi-resistant of antibiotics. Persons who uses intermittent catheterizing can many times have a small amount of bacterias in their urinary tracts.

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HOW DEFECATION WORKS

When we eat our stomach expands. This leads to more protracted contractions in our large intestine that pushes the content in de lower part of your large intestine to your rectum. Normally it takes 1-3 days for the food to go from your mouth to the toilet.

When the content is pushed into your rectum sensory cells are stimulated by the pressure. It leads to defecation reflex is triggered – you feel a need to defecate. The procedure so far is under the part of your nervous system that you can’t control. But the outer anal sphincter is something you can control. If you don’t want to take a dump you don’t.

When you decide that it’s time to poo/defecate/take a shit or what ever you prefer calling this shit (hahaha – I’m so incredibly funny. According to me) your muscles in your chest and abdomen cooperates together with you closing your windpipe. This leads to an increased pressure in your abdominal cavity that forward the pressure  to your large intestine and rectum

Have you ever noticed that you close your mouth and pushes the air down into your chest and that you flex the muscles in your abdomen when defecating? I laughed of recognition when I red that.

MS AND BOWELS AND DEFECATION PROBLEMS

The most common bowel dysfunction if you have MS is being constipated Some somewhere between 43-53 % of people with MS are suffering from constipation. According to MSsällskapet in Sweden the cause behind problems with your bowels are lesser known.  They point out that the bowels mostly have their own nervous system that is being being inhibited or stimulated by your autonomic nervous system.  

When you have a damage in your Central Nervous System this system are likely affected negativ. Also the mechanism including those nerves we need to rely on when it comes to defecate are likely effected. Either the  stimuli of rectum or control of the sphincters or both.

Difficulties emptying the rectum can cause constipation. And problems storing the stool in your rectum (as you do before you are able to sit down on a toilet) can cause fecal incontinence. 

It’s not uncommon that a person with MS have difficulties with both constipation and fecal incontinence.

Fecal incontinence

Studying people with MS they find that those with fecal incontinence  haven’t got the strength as others in the by your own will controlled sphincter. On MSsällskapets page they mention a study by Nordenbo et al  where they find an association between worsened or a complete loss of the reflex in rectum and fecal incontinens.

The feeling of ‘it’s time to go’ can be deminagedt. And if you can’t feel that your rectum is full it will likely lead to you leaking stool.

Constipation

They’ve seen that persons with MS has changes in their activity in their Colon and the process to get the food through the colon takes longer time. If you then don’t drink enough, have a low ability to be active and some sorts of medicine you can start taking medicines agains constipation or eat tons of fibers to keep the constipation away.

A disfunction in your rectum also contributes to good, old constipation. 

How to find the reason behind your defecation problems

There are several ways to investigate the bowels and how they do or don’t work.  

Fecal incontinence without problems with constipation

According to the MS Sällskapet the doctor should first questioning if there can be another colon or rectal illness too. 

The doctor can also ask for investigation of the pressure in rectum and measurement of the sphincter contraction.

Constipation and fecal incontinens

There are several ways to study this. But I will just mention the investigation where you swallow a marker that then is being followed during several x-rays until you’ve pooped it out. Tada! Now they can say if your bowels movements are slow and if their extra slow or fast in one or another part of  your bowels.

How to treat dysfunctional bowels

Since mine are treating me with no respect what so ever, I do not feel like treating them well…

Just kidding. Actually I’m in the group that sometimes are fecal incontinent, never constipated, rather the other way around… Not very fun that either.

Where to begin

No matter what your bowel-problem you’ve may got you can begin with making sure that your body posture is facilitating your defecation. Try to sit so you supporting your thighs on the seat. Then your knees should be in a 45-90 degrees angle compared to your upper body. This means that you probably need to have something under your feet. I use the same stool as the children stood on when they were small and didn’t reach the sink. (From IKEA, of cause.) Or you can try just leaning forwards for a start if you don’t have a stool of some sort. (I’m not talking about the ‘defecation stool’…) See picture above.

Medication free treatment when constipated

  • When feeling the urge to defecate – go. Don’t wait.
  • Don’t stress when your on the toilet. Bring a book or listen to a book. Watch YouTube or netflix through your phone or iPad. Take it easy and tell your family or roommate that you want to be alone. 
  • Move as much as you can. I know that is easier said than done, but if possible. Drink a lot during daytime (you don’t want to run to pee during nighttime….)
  • Eat food rich of fibers. There are fruits, veggies, seeds, fish, meat, birds, natural are rich of fibers. Use fats as oliveoil, cream and butter. 
  • Since intake of food stimulates the bowels one recommendation is to regularly go to the toilet after eating.
  • You can also try to gently push perineum, the area between urethra and anus.
  • This doesn’t feel funny at all but, low and behold, it works! Stimulation of the outer sphincter. Use gloves and put some lubricant on one of the fingers. Stick that finger up your butt about 1-2 cm (this time you have to convert yourselves) and turn it around like a circle (your sphincter is like a circle) whilst you have put a small pressure against the wall. You don’t need lubricant or gloves, unless you have hurting hemorrhoids or if you easily bleed. Put some paper over your finger instead of gloves. If needed you can use an ointment or vaseline on the paper. The rest you need to to is what I wrote above. 
  • Manually picking the stool from the rectum can be used in difficult cases. But rest assured – this is a method that really avoided as long as possible. Not because the nursing staff are grossed out, you should only know how much we love doing gross stuff. Yes, I’m not serious at all. It’s avoided since if you use this method regularly, there’s a risk of damaging the sphincter.
  • Don’t bear down/push/press (what ever’s the right term in english…). Use your abdominal muscles –  open your mouth and take a breath into your belly. Breathing with your belly can be easier if you open your mouth and think that your letting your stomach point forwards as much as possible. This makes the pelvic muscle to relax.
  • When do you normally defecate during the day? Many of us defecate about the same time every day. Try to keep on doing that. Recommendations are that you try do go after breakfast. Sit for a longer moment. This method didn’t work out for me but you are lucky – I’m not the norm.

 

  • Medication free treatment for you with fecal incontinence and/or you having trouble emptying a full rectum
  • avoid chewing gum, avoid suger and sweets, don’t drink sparkling beverages, avoid nicotine, avoid spicy spices, avoid fatty foods and coffee.
  • Manually picking the stool from the rectum can be used in difficult cases. But rest assured – this is a method that really avoided as long as possible. Not because the nursing staff are grossed out, you should only know how much we love doing gross stuff. Yes, I’m not serious at all. It’s avoided since if you use this method regularly, there’s a risk of damaging the sphincter.
  • The finger-in-your-ass-tips mentioned under medication free treatment of obstipation can work here too.
  • There’s something called anal plug. It actually works! I used this aid when we were abroad so I was able to swim in the ocean. My experience is that it works as long as you don’t have a really big diarrhea problem. It can be that I would have needed a bigger size of the plug. Maybe it leaked because I used some lubricate to insert it. I link the one sort that I  have tried.
  • What you can start doing at once: pelvic training. If you can’t feel anything at all, control the pelvic muscles at all, of cause this might not be for you.
  • There are now several sanitary napkins that removes the smell from leaking stool. 
  • Don’t wash your self too often. Dry and clean your anal very gently to prevent irritation of your skin and wounds.
  • Don’t have tight undies. Preferably made of cotton. 
  • You can have a cotton pad against your anus in your pants to prevent moist from destroying your skin there.

Medications for constipation

  • Your doctor with helping you out finding what works best for you. Many times the pharmacists in your pharmacy what medicine would be best for you. If you don’t want to wait to a doctors appointment to get laxatives. But you need to be sure that it’s constipation that is your problem. 
  • Bulking aids
  • It’s not totally uncommon that you with MS needs to use enemas. Here’s a link to show you one distributors enema system. But that is something your doctor should decide. Using enemas when your problem is something else can be damaging for your bowels in worst of cases. How frequently you need it can probably be decided by looking at your defecation habits when you didn’t have MS. Not all people needs to do ‘number 2’ everyday. But the frequency also needs to take the reason to why you need enema into account.
  • Micro enemas (medicine)

Medicine for fecal incontinent 

  • Bulking aids can be used. This increases the volume and consistent of the stool which makes it easier for the part of the system that is under the control by our will.

Operation against difficult fecal incontinence

  • Remember the InterStim, the sacral nerve stimulator, I mentioned under surgical moves to take care of bladder issues? You can use that machine to stimulate your nerves to work also for bowel incontinence. Link here.
  • In difficult cases of incontinence a ostomi can be made from the last part of the colon. A so called sigmoid colon ostomi. Easily explained is that they through surgery cuts the part of the bowels in Sigmoid colon and draw it through  the skin and makes like a new anal opening there on the belly. And then you ware a bag over it to collect the stool in. This bag you can change or emptying when needed. Explaining a ostomi is something that needs it own post, so I stop explaining it here.
Peristeen (Coloplast) anal plug
The anal plug isn't big but it takes some time before you've learned to insert it without causing discomfort

important

If you have an compromised immun system, have medication or illness that makes you bleed easily,  bowel surgery, rectal prolaps hemorrhoids etc you really need to ask your doctor before you try enema or other medical solutions that include you sticking something in your rectum. My summation is – ASK YOUR DOCTOR BEFORE PUTTING ANYTHING IN YOUR RECTUM!

You can read more about enema here.

InterStim TM

Disclaimer

I’s always your doctor what sort of aids you can receive from them. It’s different around the world and it differ among regions in the same country. With this post I want you to know that incontinenc, urine or bowel, is a REAL problem many suffers from. Not only persons with MS, there are so many out there who shares the same issue. If you know someone with the same problem – please feel free to share this post.

If any questions, contact me. I think its easier for you to mail me than adding a comment. I wish I’ve helped you with this post, in any sort or way!!!

Love to you all!

Resources

www.coloplast.se / www.coloplast.se

https://docplayer.se/5664296-En-bok-om-en-bok-om-ms.html

www.mscrossroads.org

www.msfonden.se

www.ms-gateway.com


www.msif.org

www.mssallskapet.se

www.mssociety.org.uk

www.mswebpals.org

www.multipelskleros.nu

www.wellspect.se

www.1177.se

Being a spouse, child or close one

BEING A SPOUSE, CHILD, PARENT, FRIEND OR OTHER LOVED ONE TO SOMEONE WITH A CHRONIC ILLNESS

When a close one, as a spouse, partner, parent, child, extended family or friend gets a diagnos that can affect the rest of your life. It’s not only the one who gets the diagnosis who gets ‘cast out in the unknown’. Also the loved ones are faced with the uncertainty of what now and the future will  look  like.

Disclaimer

Having a family member who gets a diagnosis

New situation for your family 

It’s not only the diagnosis that you have to deal with. The familys situation is being affected by maybe a change of income, the rest of the family gets a bigger responsibility when comes to household tasks. The life can get more filled with stress and worries. You can feel that’s unjust that you should have to live in that situation – that life is unfair.

I’ve talked about crises before. And coping strategies. You can read a little about coping strategies here. I know, it’s from the perspective of getting I diagnos. But also the ones who lives with that person or is close to that person, goes thru different phases of the crises. And that person who have a diagnosed family member that this post are for.

So many feelings

Your life is also affected. Your family member has been diagnosed with a disease that will never get away or it will be there for a long period of time. You will probably also be filled of feelings like anger, sadness, worries, depression amongst many other feelings. Feelings that are common in a state of shock over something. How you will go on from that notice of disease is just as individual as the reactions are for the one who’s gotten diagnosed. But there are no ‘right way’ to react. Our upbringing, our cultural traditions, our experiences from before are  facts that effects how we react. As long as we’re able to come out of the shock, go on to the next phase.

We all have different coping strategies when we react to something; some will serve us well whilest others will lead to a long time, maybe a lifetime, full of misery. And every single person in this world will sometime during their lives be exposed to something tough to handle. Just look at our situation right now; the whole world is exposed to a pandemic! And all of us has handled with it in different ways. That is because we use different strategies to cope with a new situation and this disaster that COVID brought with it.

 

 

About crises

Everyone. Let me say that again; EVERYONE, can end up in a crisis. What leads to a crise is to be put before an important change of your life. Even ‘happily ever for the rest of your life’- people gets a crises. One day… Usually you get through the crisis by handle the challenges in a beneficial way. If done in a beneficial way it can come something ‘good’ of the situation, like experience. And as you know, not all experiences are that kind of experience you would like to have but yet we can have good use of it in our future. As a family you can grow closer, your bond to extended family or friends can grow stronger. Not all bad experiences are for the worst.  Researchers looks at these  responses we get due to the unwished event as a process started by the  event.

What can be classified as a crises?

It doesn’t have to be an overturning event that happens to you, but it is almost always about something that, in some way, changes your life. It can for example involve someone close to you that has died, a divorce, an unemployment or you or a loved  being diagnosed with a chronic disease.

Different stages of crises

Warning

When someone gets a diagnosis most of the time it has been preceded of a time of the person feeling ill in some sort a way. This ‘warning’ may have arised years previous to the diagnosis or there haven’t been any symptoms, the person gets a diagnosis almost at the same time as they fell ill. Dyregrov is one who have talked about the effectiveness of the ‘warning’ – if the warning comes to early or being repeated over and over again and nothing happens it can be overlooked. In relation to a diagnosis it could be interpret as if the person who’s ill carries symptoms of an illness for a long time, he/she may think that it’s just the way he/she is feeling –  that there’s nothing wrong with them. Maybe you or your significant other has seen a doctor who has told you that there’s nothing wrong which makes you think that the symptoms aren’t anything to worry about. We aren’t seeing the ‘danger’.

This false assumption, mentioned above, gives us a false feeling of security and if sense of security are too strong we may not percept the danger (illness) according to Janoff-Bulman (1992).

On the other hand – if we receive the ‘warning’ too late it can send us into panic and/or irrational behavior according to Dyregrov (1993).

shock

In the stage of shock your body is trying to protect you from the pain the  experience causes, both physically and mentally. You can lose your perspective of time and  space. It can make your level of activity go down and you can lose your emotions. Just a few examples of what can happen if you’re in a shock. The shock can make you unable to make any decisions or it can make you take action without thinking about what the outcome may be. It can make you unable to accept, or even hear, what someone says to you. Memories from that moment you’re getting information of the illness can be lost to you – you don’t remember a single moment from that time when you met the doctors or the nurses. Or it can be that you’re remembering certain colors, the room you’re in and the tone of the voices from that moment you got the information of the illness.

Physical emotions can for examples be nausea, palpitations, muscle weakness,  shortness of breath.

This stage can pass in just a second or  be there for a long time.

Early reaction period

When the first emotions like sadness, anger, fear or a mixture of them, comes the stage of shock is considered being over. During this phase it’s considered that we collect our strength and plan our next action. By doing this we’re trying to get our control back. This phase can be there for four to eight weeks and is said to be the most painful phase.

The later reaction phase

This period is very dependent of how we deal with the new situation that a illness throughs us into. We can be in this phase from weeks to several years. It is in this period we decide how to change our lives due to the diagnosis and we decide what our coping strategies will be. Subconsciously or consciously. The strategies can benefit us or it can lead to difficulties like substance abuse. 

Also, post traumatic stress can occur.

Reactions in families to someone who’s gotten a diagnosis

I’m not diving too deep in to this. I noticed that I started to write a 200 pages long book about reactions on crises… So just a few notes on this subject;

Denial

This is something that can occur initially when a diagnosis is made or it can occur later on. Often denials can be a result from not be given enough of information. It can also be a result of the fact that you might never experienced something similar before and therefor not know how to react.

How to prevent or decrease a denial

If a family ends om denying the diagnosis it’s important that the persons are given more information. A lack of information is always a risk of developing a denying attitude. This leads to the diagnosed one is given a heavier burden. It’s very hard having symptoms and a diagnosis when you’re not fully believed of your loved ones. Or the ill one is knowing a diagnose but your family is denying it. Summary: if you, as family, don’t have all the facts about the diagnosis and what’s expected to happen now it’s easy that you deny the illness and its symptoms your family member have got.

This can be changed! Setting  up a new doctors appointment or an appointment for the family with a nurse specialized in the diagnosis. Either with or without the one carrying the diagnosis. If the concerned family is in shock when the information about the diagnosis is given it’s possible that the shocked one doesn’t understand the information. And not having the information can lead to denial. That’s why it is important that the clinic of that specific diagnosis follows up the diagnosed one and its family.

As we all know the follow up isn’t always possible due to the lack of doctors and nurses and them having too many patients to look after. Especially during this time of covid this is the reality. Therefore it’s important that the diagnosed one or other family members look after each other and looks for behavior of denial. You can always call your reception and tell them about this problem and ask how  they think you need to act. 

This burden of having family in denial, that hasn’t understood the information, isn’t a burden the diagnosed one needs but for many this is the reality. I know.

Hopelessness and helplessness

Maybe the future after a diagnosis can seem hopeless and the family can feel helpless. And this is a feeling that can occur initially or it can be felt during the years when the illness is there. Due to worsened symptoms or when it gets understood that this illness is chronic. If, during the crises, feelings of anxiety, confusion and fear isn’t met with understanding or information it can lead to the feelings of hopelessness or helplessness.

The feeling of helplessness can result in the family member withdraws from the diagnosed person. That is why it’s important to meet the familys feelings during the crises and be helped thru those feelings. That the families gets tools how to manage those feelings in a good way. 

How to help someone feeling hopelessness and helplessness

If possible, notice feelings of anxiety, confusion or fear within you and talk to your family members so they can help you turn to right persons to get help or information. If you acknowledge these feelings ask for help!  Is it clear information you need, a therapist or is it support in finding coping strategies you need? Many associations have information to help families of a chronically ill. I found this pamphlet browsing the webb that have lots of information for you.

Whos responsibility is it that the family can function despite a chronic illness?

From the view of having a chronic illness myself and going thru a lot of therapy; it is the family of the ill person own responsibility to look for the help they need.

From the view of reality I know that the families aren’t able to see they selves that they’re not feeling well, their understanding of the illness and the symptoms that follows aren’t there.

 

How to deal with it

As I mentioned before, it’s crucial that also the significant others gets the help they need.

You can’t get rid of the pain you, as being family to someone with chronic illness, are feeling. But having someone who’s not afraid to stand there by your side when all thoughts, feelings and emotions spills out from you is a really important. To help you thru the crises. 

Not all of us, or rather – many of us –  don’t have a friend or a spouse  to express all their emotions and thoughts to.

In many cases there can be family members or friends that you can talk to, that are willing to stand by your side in this rough time. But you don’t want to ‘bother them’ with  your feelings or you want to appear to be a strong person who finds solutions and adaptations that takes you through everything. Especially if it is your spouse, child or parent who gets sick you may feel the need to be the strong one.

I know, we are many who are sick who takes the role of being the strong one, but this post are to all who has the role of being family to a sick significant other.

I can tell you, from my own experience, that it’s impossible to keep up that fasade forever. Sooner or later there’ll  likely be a collapse for you. But please remember; for us, we who’s got this chronic illness, it is really, really important to us that our significant others are feeling well! You want be able to help us if you’re not feeling well.

Being spouse to one with MS or other Chronic illness

Actually I just found a really short text that included the basics when it comes to being a spouse of someone with MS from Very Well Health. Really recommend you reading it.

On the Swedish Neuro association homepage they also points out the need of offering therapist  to those who live with someone with a neurological illness. That the families should know where to turn if in need of some sort of homeware. Also that the families of the ill person gets time for doing what they love. As I said before; if the families of someone with an illness don’t take care of them selves they won’t bee able to support the ill. You, as family to someone ill, need have respect for your own, as for the ill ones, mourning reaction. (If that’s a way of putting it in english…) I  know that families to someone with cancer should be given the same abilities too. 

  • Don’t be afraid of asking extended family and friends of help. They probably understand why you’re doing that.
  • Put up boundaries of what you have the strength to do or don’t.
  • Eat and sleep as regularly as possible.
  • Do things that makes you happy and meet friends.
  • Exercise.

I know that these tips are easier said than done, but talk about this with your spouse and extended family and friends and your boss. Together you may find a solution. It’s so easy that you, as a spouse, feel alone and get bitter over your situation. Remember: there is help out there. In some sort of way.

As a spouse of someone with chronic illness you can always call the clinic that takes care of your spouses illness and ask if they have advices or other sorts of help for you!!!

Being child or a parent to someone with MS or other chronic disease

In Sweden many hospitals are able to offer support with and to children of someone with a chronic disease thru therapist specialist in children. I know I brought my kids to my MS-nurse so she could explain to them about MS. Somehow the fact that me myself was a nurse didn’t mean a thing to my kids…  But it’s like that when it comes to all illnesses; from a running nose to a pimple – If mama says it’s a cold or if she says it’s a pimple it doesn’t matter. They needs to hear it from someone else… Just for me to accept that it’s how it is 😀

Parents to children or teens are most of the times there when their children gets the diagnosis. But they are, if handled correct by the healthcare, offered a therapist when needed.

Being a child or a parent are difficult roles! When it comes to the children of someone with a chronic illness you can’t just say “it’s up to the children to get help when needed”. Even if you’re the one who’s ill you are still the one who’s responsible for the kids, but if you have a partner they should  help you out with the observations of your kids feelings or emotions. 

Being extended family or a friend

I’m sorry to say that but if you need help of how to support someone with a chronic illness or your own emotions – it’s your responsibility to get help. I can’t speak for all persons with a chronic illness, but for me, what I wish of my friends and extended family is that they talk with me if they have any questions or thoughts about my illness or how I wish to be treated. What I can and cannot do. Etc. 

It's easy to feel 'not being enough'

So what do I want you to get from this post???

My primary target for this post are you who lives together with someone with a chronic illness, a parent, child, spouse partner. Or maybe you are a grandparent, a friend, a neighbor or a co-worker with someone who is ill.

WHY? Well, seen from my point of view, who is a chronic ill person, it’s important that the ones around me are getting the support they need. It is your responsibility to take care of your health (unless you are a child or youth). If I, as an ill person, don’t feel that your physical or mentally in a good state, how can I take care of myself so I can be around you for as long as possible? I will have to do more than I can because my children/parent/spouses/partners who aren’t feeling well enough to take care of what I’m not able to take care about. And the more time I need to put energy into getting the food finished, the floors scrubbed, noses cleaned and litterboxes emptied the less energy I will have to be the mother/child/spouse/partner I wish I could be. And you would want to be.

What I wish to say is that if you don’t take care of your wellbeing, how will you be able to do those chores that your child/mother/spouse/partner need you to take care of. Or being the support they needs of you?

Teamwork

There needs to be a teamwork in a family where someone has a chronic illness. The ill ones makes sure he or she feels as good as possible and does what he/she are able to. You need to make sure that you feel as good as possible. Then you can figure out together what now and the future will look like in your family.

As a friend or extended family you also make sure that you feel as good as possible. I think other chronic ill feel the way I do:

I don’t want people around me, wether if it’s my close family, extended family or my other loved ones, to feel down/depressed or drained because of me.

If you are a bot, don’t bother to put comments into my box. Otherwise I love to hear from you! I know, there are a lot of aspects that I haven’t mentioned.

 

To the next time…

 

Nationellt cancercentrum. https://cancercentrum.se/samverkan/patient-och-narstaende/narstaendestod/vagledning-for-narstaende/ Hämtat 2021-01-26

Neuro. https://neuro.se/media/1247/att-leva-som-narstaende.pdf Hämtat 2021-01-26.

Dyregrov, A. Katastrofpsykologi. 2:a upplagan. Studentlitteratur, 2002.

Janoff-Bulman, R. Shattered assumptions: Towards a new psychology of trauma. New York, Free Press, 1992.

Hannu Rantanen, The research project ‘Developing a crisis scorecard’ leading to these results has received funding from the European Community’s Seventh Framework Program (FP7/2007- 2013) under grant agreement 217889.

BEING A SPOUSE, CHILD, PARENT, FRIEND OR OTHER LOVED ONE TO SOMEONE WITH A CHRONIC ILLNESS

When a close one, as a spouse, partner, parent, child, extended family or friend gets a diagnos that can affect the rest of your life. It’s not only the one who gets the diagnosis who gets ‘cast out in the unknown’. Also the loved ones are faced with the uncertainty of what now and the future will  look  like.

Disclaimer

Having a family member who gets a diagnosis

New situation for your family 

It’s not only the diagnosis that you have to deal with. The familys situation is being affected by maybe a change of income, the rest of the family gets a bigger responsibility when comes to household tasks. The life can get more filled with stress and worries. You can feel that’s unjust that you should have to live in that situation – that life is unfair.

I’ve talked about crises before. And coping strategies. You can read a little about coping strategies here. I know, it’s from the perspective of getting I diagnos. But also the ones who lives with that person or is close to that person, goes thru different phases of the crises. And that person who have a diagnosed family member that this post are for.

So many feelings

Your life is also affected. Your family member has been diagnosed with a disease that will never get away or it will be there for a long period of time. You will probably also be filled of feelings like anger, sadness, worries, depression amongst many other feelings. Feelings that are common in a state of shock over something. How you will go on from that notice of disease is just as individual as the reactions are for the one who’s gotten diagnosed. But there are no ‘right way’ to react. Our upbringing, our cultural traditions, our experiences from before are  facts that effects how we react. As long as we’re able to come out of the shock, go on to the next phase.

We all have different coping strategies when we react to something; some will serve us well whilest others will lead to a long time, maybe a lifetime, full of misery. And every single person in this world will sometime during their lives be exposed to something tough to handle. Just look at our situation right now; the whole world is exposed to a pandemic! And all of us has handled with it in different ways. That is because we use different strategies to cope with a new situation and this disaster that COVID brought with it.

 

 

About crises

Everyone. Let me say that again; EVERYONE, can end up in a crisis. What leads to a crise is to be put before an important change of your life. Even ‘happily ever for the rest of your life’- people gets a crises. One day… Usually you get through the crisis by handle the challenges in a beneficial way. If done in a beneficial way it can come something ‘good’ of the situation, like experience. And as you know, not all experiences are that kind of experience you would like to have but yet we can have good use of it in our future. As a family you can grow closer, your bond to extended family or friends can grow stronger. Not all bad experiences are for the worst.  Researchers looks at these  responses we get due to the unwished event as a process started by the  event.

What can be classified as a crises?

It doesn’t have to be an overturning event that happens to you, but it is almost always about something that, in some way, changes your life. It can for example involve someone close to you that has died, a divorce, an unemployment or you or a loved  being diagnosed with a chronic disease.

Different stages of crises

Warning

When someone gets a diagnosis most of the time it has been preceded of a time of the person feeling ill in some sort a way. This ‘warning’ may have arised years previous to the diagnosis or there haven’t been any symptoms, the person gets a diagnosis almost at the same time as they fell ill. Dyregrov is one who have talked about the effectiveness of the ‘warning’ – if the warning comes to early or being repeated over and over again and nothing happens it can be overlooked. In relation to a diagnosis it could be interpret as if the person who’s ill carries symptoms of an illness for a long time, he/she may think that it’s just the way he/she is feeling –  that there’s nothing wrong with them. Maybe you or your significant other has seen a doctor who has told you that there’s nothing wrong which makes you think that the symptoms aren’t anything to worry about. We aren’t seeing the ‘danger’.

This false assumption, mentioned above, gives us a false feeling of security and if sense of security are too strong we may not percept the danger (illness) according to Janoff-Bulman (1992).

On the other hand – if we receive the ‘warning’ too late it can send us into panic and/or irrational behavior according to Dyregrov (1993).

shock

In the stage of shock your body is trying to protect you from the pain the  experience causes, both physically and mentally. You can lose your perspective of time and  space. It can make your level of activity go down and you can lose your emotions. Just a few examples of what can happen if you’re in a shock. The shock can make you unable to make any decisions or it can make you take action without thinking about what the outcome may be. It can make you unable to accept, or even hear, what someone says to you. Memories from that moment you’re getting information of the illness can be lost to you – you don’t remember a single moment from that time when you met the doctors or the nurses. Or it can be that you’re remembering certain colors, the room you’re in and the tone of the voices from that moment you got the information of the illness.

Physical emotions can for examples be nausea, palpitations, muscle weakness,  shortness of breath.

This stage can pass in just a second or  be there for a long time.

Early reaction period

When the first emotions like sadness, anger, fear or a mixture of them, comes the stage of shock is considered being over. During this phase it’s considered that we collect our strength and plan our next action. By doing this we’re trying to get our control back. This phase can be there for four to eight weeks and is said to be the most painful phase.

The later reaction phase

This period is very dependent of how we deal with the new situation that a illness throughs us into. We can be in this phase from weeks to several years. It is in this period we decide how to change our lives due to the diagnosis and we decide what our coping strategies will be. Subconsciously or consciously. The strategies can benefit us or it can lead to difficulties like substance abuse. 

Also, post traumatic stress can occur.

Reactions in families to someone who’s gotten a diagnosis

I’m not diving too deep in to this. I noticed that I started to write a 200 pages long book about reactions on crises… So just a few notes on this subject;

Denial

This is something that can occur initially when a diagnosis is made or it can occur later on. Often denials can be a result from not be given enough of information. It can also be a result of the fact that you might never experienced something similar before and therefor not know how to react.

How to prevent or decrease a denial

If a family ends om denying the diagnosis it’s important that the persons are given more information. A lack of information is always a risk of developing a denying attitude. This leads to the diagnosed one is given a heavier burden. It’s very hard having symptoms and a diagnosis when you’re not fully believed of your loved ones. Or the ill one is knowing a diagnose but your family is denying it. Summary: if you, as family, don’t have all the facts about the diagnosis and what’s expected to happen now it’s easy that you deny the illness and its symptoms your family member have got.

This can be changed! Setting  up a new doctors appointment or an appointment for the family with a nurse specialized in the diagnosis. Either with or without the one carrying the diagnosis. If the concerned family is in shock when the information about the diagnosis is given it’s possible that the shocked one doesn’t understand the information. And not having the information can lead to denial. That’s why it is important that the clinic of that specific diagnosis follows up the diagnosed one and its family.

As we all know the follow up isn’t always possible due to the lack of doctors and nurses and them having too many patients to look after. Especially during this time of covid this is the reality. Therefore it’s important that the diagnosed one or other family members look after each other and looks for behavior of denial. You can always call your reception and tell them about this problem and ask how  they think you need to act. 

This burden of having family in denial, that hasn’t understood the information, isn’t a burden the diagnosed one needs but for many this is the reality. I know.

Hopelessness and helplessness

Maybe the future after a diagnosis can seem hopeless and the family can feel helpless. And this is a feeling that can occur initially or it can be felt during the years when the illness is there. Due to worsened symptoms or when it gets understood that this illness is chronic. If, during the crises, feelings of anxiety, confusion and fear isn’t met with understanding or information it can lead to the feelings of hopelessness or helplessness.

The feeling of helplessness can result in the family member withdraws from the diagnosed person. That is why it’s important to meet the familys feelings during the crises and be helped thru those feelings. That the families gets tools how to manage those feelings in a good way. 

How to help someone feeling hopelessness and helplessness

If possible, notice feelings of anxiety, confusion or fear within you and talk to your family members so they can help you turn to right persons to get help or information. If you acknowledge these feelings ask for help!  Is it clear information you need, a therapist or is it support in finding coping strategies you need? Many associations have information to help families of a chronically ill. I found this pamphlet browsing the webb that have lots of information for you.

Whos responsibility is it that the family can function despite a chronic illness?

From the view of having a chronic illness myself and going thru a lot of therapy; it is the family of the ill person own responsibility to look for the help they need.

From the view of reality I know that the families aren’t able to see they selves that they’re not feeling well, their understanding of the illness and the symptoms that follows aren’t there.

 

How to deal with it

As I mentioned before, it’s crucial that also the significant others gets the help they need.

You can’t get rid of the pain you, as being family to someone with chronic illness, are feeling. But having someone who’s not afraid to stand there by your side when all thoughts, feelings and emotions spills out from you is a really important. To help you thru the crises. 

Not all of us, or rather – many of us –  don’t have a friend or a spouse  to express all their emotions and thoughts to.

In many cases there can be family members or friends that you can talk to, that are willing to stand by your side in this rough time. But you don’t want to ‘bother them’ with  your feelings or you want to appear to be a strong person who finds solutions and adaptations that takes you through everything. Especially if it is your spouse, child or parent who gets sick you may feel the need to be the strong one.

I know, we are many who are sick who takes the role of being the strong one, but this post are to all who has the role of being family to a sick significant other.

I can tell you, from my own experience, that it’s impossible to keep up that fasade forever. Sooner or later there’ll  likely be a collapse for you. But please remember; for us, we who’s got this chronic illness, it is really, really important to us that our significant others are feeling well! You want be able to help us if you’re not feeling well.

Being spouse to one with MS or other Chronic illness

Actually I just found a really short text that included the basics when it comes to being a spouse of someone with MS from Very Well Health. Really recommend you reading it.

On the Swedish Neuro association homepage they also points out the need of offering therapist  to those who live with someone with a neurological illness. That the families should know where to turn if in need of some sort of homeware. Also that the families of the ill person gets time for doing what they love. As I said before; if the families of someone with an illness don’t take care of them selves they won’t bee able to support the ill. You, as family to someone ill, need have respect for your own, as for the ill ones, mourning reaction. (If that’s a way of putting it in english…) I  know that families to someone with cancer should be given the same abilities too. 

  • Don’t be afraid of asking extended family and friends of help. They probably understand why you’re doing that.
  • Put up boundaries of what you have the strength to do or don’t.
  • Eat and sleep as regularly as possible.
  • Do things that makes you happy and meet friends.
  • Exercise.

I know that these tips are easier said than done, but talk about this with your spouse and extended family and friends and your boss. Together you may find a solution. It’s so easy that you, as a spouse, feel alone and get bitter over your situation. Remember: there is help out there. In some sort of way.

As a spouse of someone with chronic illness you can always call the clinic that takes care of your spouses illness and ask if they have advices or other sorts of help for you!!!

Being child or a parent to someone with MS or other chronic disease

In Sweden many hospitals are able to offer support with and to children of someone with a chronic disease thru therapist specialist in children. I know I brought my kids to my MS-nurse so she could explain to them about MS. Somehow the fact that me myself was a nurse didn’t mean a thing to my kids…  But it’s like that when it comes to all illnesses; from a running nose to a pimple – If mama says it’s a cold or if she says it’s a pimple it doesn’t matter. They needs to hear it from someone else… Just for me to accept that it’s how it is 😀

Parents to children or teens are most of the times there when their children gets the diagnosis. But they are, if handled correct by the healthcare, offered a therapist when needed.

Being a child or a parent are difficult roles! When it comes to the children of someone with a chronic illness you can’t just say “it’s up to the children to get help when needed”. Even if you’re the one who’s ill you are still the one who’s responsible for the kids, but if you have a partner they should  help you out with the observations of your kids feelings or emotions. 

Being extended family or a friend

I’m sorry to say that but if you need help of how to support someone with a chronic illness or your own emotions – it’s your responsibility to get help. I can’t speak for all persons with a chronic illness, but for me, what I wish of my friends and extended family is that they talk with me if they have any questions or thoughts about my illness or how I wish to be treated. What I can and cannot do. Etc. 

It's easy to feel 'not being enough'

So what do I want you to get from this post???

My primary target for this post are you who lives together with someone with a chronic illness, a parent, child, spouse partner. Or maybe you are a grandparent, a friend, a neighbor or a co-worker with someone who is ill.

WHY? Well, seen from my point of view, who is a chronic ill person, it’s important that the ones around me are getting the support they need. It is your responsibility to take care of your health (unless you are a child or youth). If I, as an ill person, don’t feel that your physical or mentally in a good state, how can I take care of myself so I can be around you for as long as possible? I will have to do more than I can because my children/parent/spouses/partners who aren’t feeling well enough to take care of what I’m not able to take care about. And the more time I need to put energy into getting the food finished, the floors scrubbed, noses cleaned and litterboxes emptied the less energy I will have to be the mother/child/spouse/partner I wish I could be. And you would want to be.

What I wish to say is that if you don’t take care of your wellbeing, how will you be able to do those chores that your child/mother/spouse/partner need you to take care of. Or being the support they needs of you?

Teamwork

There needs to be a teamwork in a family where someone has a chronic illness. The ill ones makes sure he or she feels as good as possible and does what he/she are able to. You need to make sure that you feel as good as possible. Then you can figure out together what now and the future will look like in your family.

As a friend or extended family you also make sure that you feel as good as possible. I think other chronic ill feel the way I do:

I don’t want people around me, wether if it’s my close family, extended family or my other loved ones, to feel down/depressed or drained because of me.

If you are a bot, don’t bother to put comments into my box. Otherwise I love to hear from you! I know, there are a lot of aspects that I haven’t mentioned.

 

To the next time…

 

Nationellt cancercentrum. https://cancercentrum.se/samverkan/patient-och-narstaende/narstaendestod/vagledning-for-narstaende/ Hämtat 2021-01-26

Neuro. https://neuro.se/media/1247/att-leva-som-narstaende.pdf Hämtat 2021-01-26.

Dyregrov, A. Katastrofpsykologi. 2:a upplagan. Studentlitteratur, 2002.

Janoff-Bulman, R. Shattered assumptions: Towards a new psychology of trauma. New York, Free Press, 1992.

Hannu Rantanen, The research project ‘Developing a crisis scorecard’ leading to these results has received funding from the European Community’s Seventh Framework Program (FP7/2007- 2013) under grant agreement 217889.

How to exclude trolls – or not

How to exclude trolls from your blog I don't dare to approve comments

Just need to say! You, who have written me a comment that you really mean; I’m so grateful.

Reading through the comments I notice that several of the comments are a repeat of another with just two words changed or the nice have changed name. Just a few examples. I hope you understand that I don’t dare to accept all comments since I’m

  1. scared of getting hacked
  2. don’t dare to believe that someone really means what they’re saying, I believe it’s a troll
  3. I’m scared of feeling stupid due to me believing that someone read my blogpost and liked it

I do hope you understand me and that you can forgive me!

To everyone that has read my blogposts I'm truly grateful!!! I really appreciate you and I'm hoping that I will help you out in some way!

How to exclude trolls from your blog I don't dare to approve comments

Just need to say! You, who have written me a comment that you really mean; I’m so grateful.

Reading through the comments I notice that several of the comments are a repeat of another with just two words changed or the nice have changed name. Just a few examples. I hope you understand that I don’t dare to accept all comments since I’m

  1. scared of getting hacked
  2. don’t dare to believe that someone really means what they’re saying, I believe it’s a troll
  3. I’m scared of feeling stupid due to me believing that someone read my blogpost and liked it

I do hope you understand me and that you can forgive me!

To everyone that has read my blogposts I'm truly grateful!!! I really appreciate you and I'm hoping that I will help you out in some way!

How to find trolls in your comments

How to find trolls in your comments

This is a question not a solution. Please help me out! I’m feeling really stupid when I’m answering my comments not knowing if their comments are real or just spams or fishing. 

#seriouslyfooled?

How to find trolls in your comments

This is a question not a solution. Please help me out! I’m feeling really stupid when I’m answering my comments not knowing if their comments are real or just spams or fishing. 

#seriouslyfooled?

Just a quick one

When one of your loved ones gets ill.

Because of the wind combined with a little chilly temperatur I wasn’t able to take my walk with Wille until it turned dark. There were so much for him to sniff at and the children’s laughter from the hill where they were sledding there where many noises for him to ponder of.

When we came home my MS-body were stiff, but not as stiff as it would have been if I had taken that when the wind blew. At our step up to the door Wille had went one lap around my legs so I had to put down the leash to yank my feet out of the mess. So from that I didn’t have my eyes on his, I just focused on the leash and getting my up that stare and letting us in. When inside I sat down on our “bench” and I took that knitted reflex vest off of Wille. When I’d done that I saw his right eye…

It was blinking and it squinted. I looked into it; I’ve work as a nurse so somethings I can do. 😉 It wasn’t more red than the other and there were no filth or goo in it. So I made a call to the veterinarian on call. 

 

There were so much for him to sniff at when we got to the clinic. He ate his food after our walk and he played with the kids after I made the call to him, so at least it wasn’t entirely bad with him. But still; eyes are important stuff! His eyes were thoroughly examined and the conclusion was that he had a inflammation in his eye. Not in the tissue around his eyes in the eye socket but IN his eye. He got a shot of medicin against his inflammation and pain that it causes. After that we went home (my  husband drove me because at that time I’m usually in bed because of I’m really tired by then). The doctor said that if the medicine hadn’t worked by today and his eye still were like that we had to contact them today. So it was a anxious me who gave him the 2 different sorts of eyedrops last night before going to bed.

Because of the light from the window you can’t see it, but his eye is much much better today. As long as he hasn’t got light around him his eye is open. We’ll need to continue with his medication as prescribed and on Friday we have an appointment for a revisiting at the veterinarian clinic. And me and my family will be anxious until the time we’ll know that his sight is normal again. At least that is what we really hope for. Give me the COVID – just promise me our little Wille will have a healed eye.



When one of your loved ones gets ill.

Because of the wind combined with a little chilly temperatur I wasn’t able to take my walk with Wille until it turned dark. There were so much for him to sniff at and the children’s laughter from the hill where they were sledding there where many noises for him to ponder of.

When we came home my MS-body were stiff, but not as stiff as it would have been if I had taken that when the wind blew. At our step up to the door Wille had went one lap around my legs so I had to put down the leash to yank my feet out of the mess. So from that I didn’t have my eyes on his, I just focused on the leash and getting my up that stare and letting us in. When inside I sat down on our “bench” and I took that knitted reflex vest off of Wille. When I’d done that I saw his right eye…

It was blinking and it squinted. I looked into it; I’ve work as a nurse so somethings I can do. 😉 It wasn’t more red than the other and there were no filth or goo in it. So I made a call to the veterinarian on call. 

 

There were so much for him to sniff at when we got to the clinic. He ate his food after our walk and he played with the kids after I made the call to him, so at least it wasn’t entirely bad with him. But still; eyes are important stuff! His eyes were thoroughly examined and the conclusion was that he had a inflammation in his eye. Not in the tissue around his eyes in the eye socket but IN his eye. He got a shot of medicin against his inflammation and pain that it causes. After that we went home (my  husband drove me because at that time I’m usually in bed because of I’m really tired by then). The doctor said that if the medicine hadn’t worked by today and his eye still were like that we had to contact them today. So it was a anxious me who gave him the 2 different sorts of eyedrops last night before going to bed.

Because of the light from the window you can’t see it, but his eye is much much better today. As long as he hasn’t got light around him his eye is open. We’ll need to continue with his medication as prescribed and on Friday we have an appointment for a revisiting at the veterinarian clinic. And me and my family will be anxious until the time we’ll know that his sight is normal again. At least that is what we really hope for. Give me the COVID – just promise me our little Wille will have a healed eye.



https://www.youtube.com/watch?v=xUs-2rOMbLo

Barn- och ungdomsyoga är rörelseglädje

Barnyoga för alla

Alla barn, oavsett om de har fysiska hinder eller ej, kan yoga. Detta är något som jag brinner för! Tyvärr gör min MS att jag brinner ganska långsamt men min plan är att jag ska kunna hjälpa barn- och ungdomar med olika fysiska hinder att yoga om det är något de vill göra!

 För barn upp till ca 10 års ålder brukar det vara roligast att knyta an övningar till olika övningar där de får föreställa sig att de är djur, i vardagssituationer, i olika miljöer eller kanske platser. För de yngre kan de med fördel göra yoga i form av en saga.

Även barn utan fysiska hinder är individuella och övningarna kan behövas anpassas till individen. Framför allt gäller det också för barn med fysiska hinder; någon som kanske måste sitta på en stol och yoga eller som är rullstolsburen. Men ALLA kan yoga! Ett barn med fysiska hinder kan dock behöva assistans i vissa övningar (beroende på deras hinder). Detta skapar dock ett ypperligt tillfälle för föräldrar, syskon, mor- och farföräldrar, pedagoger eller sjukvårdspersonal att hitta på något mysigt tillsammans med, umgås med, barnet.

Många gånger kallas yogan för ‘rörelseglädje’ när vi talar om yoga för barn och yngre äldre barn då orden yoga kan vara laddat på olika sätt. ‘Flummigt’ är en värdeladdning ordet ‘yoga kan ha…

Under uppbyggnad…

Min tanke är att i framtiden ha grupper där vi på något vis träffas och yogar,  har rörelseglädje, tillsammans. I någon form. Då tänker jag framför allt på barn med någon form av fysiska hinder. Stötta föräldrar och barn och ha roligt tillsammans. I väntan på det kommer här ett litet smakprov på en yogasaga i juletid.

Och nej, jag är inte så sur och arg som jag ser ut. Fråga min make: jag har ett väldigt bestämt ansikte utan att vara sur… Men jag skrattar ofta och gärna och då ser jag inte så sur ut. Får passa på att säga att jag är inte proffs på att filma varför mina ögon ser lite otäcka ut på filmen. Bara en liten varning.

 

Barnyoga för alla

Alla barn, oavsett om de har fysiska hinder eller ej, kan yoga. Detta är något som jag brinner för! Tyvärr gör min MS att jag brinner ganska långsamt men min plan är att jag ska kunna hjälpa barn- och ungdomar med olika fysiska hinder att yoga om det är något de vill göra!

 För barn upp till ca 10 års ålder brukar det vara roligast att knyta an övningar till olika övningar där de får föreställa sig att de är djur, i vardagssituationer, i olika miljöer eller kanske platser. För de yngre kan de med fördel göra yoga i form av en saga.

Även barn utan fysiska hinder är individuella och övningarna kan behövas anpassas till individen. Framför allt gäller det också för barn med fysiska hinder; någon som kanske måste sitta på en stol och yoga eller som är rullstolsburen. Men ALLA kan yoga! Ett barn med fysiska hinder kan dock behöva assistans i vissa övningar (beroende på deras hinder). Detta skapar dock ett ypperligt tillfälle för föräldrar, syskon, mor- och farföräldrar, pedagoger eller sjukvårdspersonal att hitta på något mysigt tillsammans med, umgås med, barnet.

Många gånger kallas yogan för ‘rörelseglädje’ när vi talar om yoga för barn och yngre äldre barn då orden yoga kan vara laddat på olika sätt. ‘Flummigt’ är en värdeladdning ordet ‘yoga kan ha…

Under uppbyggnad…

Min tanke är att i framtiden ha grupper där vi på något vis träffas och yogar,  har rörelseglädje, tillsammans. I någon form. Då tänker jag framför allt på barn med någon form av fysiska hinder. Stötta föräldrar och barn och ha roligt tillsammans. I väntan på det kommer här ett litet smakprov på en yogasaga i juletid.

Och nej, jag är inte så sur och arg som jag ser ut. Fråga min make: jag har ett väldigt bestämt ansikte utan att vara sur… Men jag skrattar ofta och gärna och då ser jag inte så sur ut. Får passa på att säga att jag är inte proffs på att filma varför mina ögon ser lite otäcka ut på filmen. Bara en liten varning.

 

How to manage you failing to reach your 2020 goals?

Or is it really a failure? Isn't it just you learning about yourself and your

ability to adapt to new circumstances?

Goal assessment for 2020
All of you probably wonder ‘ what the *biiip* happened this year? You had plans and thoughts for this new decade, your family, your friends, your hobbies, your workouts etc, etc. How did you manage seeing your plans just float away with this pandemic flue? Did you revise your goals, adapt them after this new situation or did you float away too with the pandemic, not bothering to even try to set up things you wanted for yourself and your close ones?

Feelings of guilt

I do feel guilty for writing a post when I haven’t looked at your comments for… I don’t no when. ‘Feeling guilty’ is something I’ve been working hard with for years, but I’m guilty of ‘feeling guilt’ about most things in life. In the goals I wrote for this year I wanted to get rid of ‘feeling guilty’ and always ask my self ‘why didn’t I say/do what ever it was about’? I’m still working on that goal.

But I do feel disappointed that I’ve had to prioritize other areas of my life when I know that amongst all those spams are comments that warms my heart. And soul! Thank you all that have made so kind comments! When I started to blog it wasn’t about comments, it was about hopefully help someone with some aspect of having a chronic illness so these kind comments I’ve gotten are a bonus for me!

Me not having the time to go thru your comments has made me stay away from the computer and just write ‘a little something’. I’ve felt, and am still feeling, ungrateful for your comments. But I want to say to you, from the bottom of my heart; THANK YOU!!! I will read them.

2020, do I need to say more?

Well, this year has been strange for all human inhabitants of this world in some way or form. It has given me experiences that I didn’t even imagine me having to experience, not only the experience of a Pandemic flue. I’ve felt my body decay due to anemia that prevented me from doing heartbeat-increasing workout. That lead to even more decreasing of my physics… When I’ve gotten my two bags of blood, my first transfusions ever, I was  not in a good shape. On top of that I’ve had a cold more than I’ve been healthy from the beginning to the end of this ‘God forgotten year’. So now I’m not in a good shape. Though, importantly, I’m still able to walk a couple of kilometers. And I’ve been working out more frequently now than in the beginning of the year. But I really need to get better working on my cardio.

The pandemics effect on my family life

It caused that I wasn’t able to visit a close ones deathbed. He lived more than two hours away from us – and due to the COVID regulations and me being in a risk group, I wasn’t able to go there. And I missed his funeral.

My daughter have been to school via the computer at home. It meant that I’ve gotten the role as teacher every now and then on subjects I’ve needed to read about to be able to help her at least a little. I can’t deny that I’ve appreciated having her home to some amount. She’s so old now! I can’t fully get that to my mind.

My sons school has been open since he’s still in compulsory school. But for even the simplest cold he had to stay home due to the risk of having the COVID. The same goes for my husband – for the simplest cold he’s had to stay home from work. Me being cold almost all the time is probably the one who has spread the colds… But I don’t get how I’ve gotten them? I’ve been isolated due to COVID almost all the time!!!

Thankfully none of us have tested positive for COVID! Even though the kids have classmates or classmates families that have tested positive. And my daughter have been out with friends to restaurants, shopping malls and partys… I do understand why COVID increased in those ages. They don’t really seems to get the urgency staying home. Yet me, my childrens grandparents and my sister in law are in risk groups. This has caused me a lot of headaches due to the fact me not being listened to when it comes to the importance of not being out and about.

Not being able to meet family and friends

This causes pain in your soul, as you probably have noticed. The fact that we live in one of Swedens rainiest citys hasn’t facilitated meeting others. It is not just to decide ‘we’ll meet then out there’. It isn’t fun being outdoors freezing and wet… Sure, FaceTime, ordinary phone calls, have been used, but it is not the same thing. Better than nothing. But my best friend isn’t quite comfortable with ‘that kind of dates’ so… Miss her! Met her for ten minutes outdoors when I gave her my christmas present.

I miss my sister and her family. Since her wife is more sensitive than me for infections and since I’ve been having colds all the time… 

But…

Before the pandemic showed up and in-between the periods of stricter rules I’ve been able to meet some friends. And my sister and her son was here for a short visit at my parents house. So they came to my house and met my family out on our wooden deck and had coffee. We had to have warm clothes since it was in the beginning of autumn but it was cozy! And her son, now 7 years, and my kids 18 and 14 years had a great time!

On Christmas day we met up with my husbands parents, two of his brothers with their families and significant others to two of my childrens cousins. We were down by the lake where my husband and his brothers grew up and   grilled a lot of sausages. 

 

The positive side of COVID

Can’t believe that I’m saying this, but yes, there is a positive side. And no, I would still prefer that the COVID never existed.

So what is it about this years experiences that have been positive? Well, the likelihood of being outdoors this much just to see friends and family would not have been without COVID. We would have met indoors instead. Getting air is healthy 😉

Goalsetting

I wouldn’t have thought this much about what’s important to me. The goals I set before  this year have been examined thoroughly during the year. Instead of getting disappointed in myself for not getting toward my goals I’ve tried to think ‘how can I do this differently to get closer to my goals?’ . Some of my goals I’ve just crossed over and written ‘COVID’ or ‘Anemia’ or something else.

 

Mäkse Life Planning

I’ve really gotten in to the concept that Serena from Mäkse Life uses in her planner. I can’t recommend her planner enough! This content and her recommendations of how to look on the goals your setting up; that they aren’t cut in stone. They need to be revisited and possibly revised or deleted. Watch her Youtube-channel! I’m using a bullet journal instead of her planner since it costs a lot to get her planner to Sweden and I’m not particularly full of cash… There’s a lot of materials that she offers for free and with the help from that material I’ve been able to integrate her method in my Bujo.

 

Why, why, why do we need to set goals and always plan

No, we don’t. You can fly with *what ever the saying is in English* and take the day completely as it comes. In some way that is just what COVID made us do. But for me it keeps me reminding myself why I want to achieve something and how I’m able to get there. This ‘why’ is so important to me. The things I do should be something that me or my family gains something from. I need to do my workout, yoga, meditation to keep my body as healthy as this *biiiip* body of mine is able to be. And since I feel better doing workout, yoga, meditation I get an easier person to live with and maybe I’ll also become a funny person to share a house with…

Just an example of how I think. Our life is so different compared to many other families. Im not saying that they don’t have struggles, but their struggles are unique to them.

Our struggles are unique to us. And by having my goals for me and my family in mind I can plan mine and my family days in away that they are less burdensome.

My family’s struggling with me becoming more and more a disable person who’s not able to do things or go places where I’m use to. We went out for a walk in the nature by the lake we live by. Where we went is a very beautiful place and the hike there is filling up your energy level. But this time…

Our walk that would have taken my family 15-20 minutes to take ended taking an endless time because of my body. In the end my husband more or less had to drag me towards the parking. And at the final end he put me on a stone beside the road and got the car in which our kids and dog had already been for a long time. 

I cried and I cried. The people in the windshield where I was sitting had seen me the last meters so deep inside I figured out that they felt for me. But as I sat there I felt nothing but pity from them. That made e cry even more. But mostly I cried because I now knew that I never would be able to hike there again considering the narrow paths, stones and roots. 

And now my goals comes in place…

Figuring out my bodys capabilities as it is ‘right now’ has been one of my goals. I have added a walking stick when I’m walking to enable me taking walks despite my bad balance. I’m taking longer and more often breaks than I had to before. I’ve changed my workout so it fits my physical abilities. I’ve changed at what time I’m going to bed and when I get up so I will get the most out of my days accordingly to what my body allows. 

I’ve changed so much that when some days had passed from this defat  at Helgö (the place of our hike) I thought “are you just accepting this? You love the lake, you love to walk in the forrest! Are you just letting these things go without trying new ways, other ways, to enable these kind of hikes?”

Result of setting goals

My goals forced me to become me again. Me, who finds solutions. Not giving up without a fight (which I’ve tended to do many times). I tried to work when the body said ‘no’. I found a new way to get myself a meaning when I’m not able to work. No, I sat down and went through what had hindered me on this hike. And I found ways to manage those hinders and I will damn it try these options before I call it a quit!!! I will be back there. Bringing a large thermos with coffee (with milk) and something good to chew on and a blanket to sit on. That this hike normally would take 15-20 minutes aren’t important. I just to have to made sure that it can take a couple of hours to do this. But it’s oh so worth it! You should see that place in the spring. Or in the summer. The birds, the green trees, the forest flowers, the rocks going into the water. It’s a perfect place to recharge your batteries. Especially if you have a body and mind as I.

 

What do I really want to achieve with this post???

My intentions this year were to share more about being chronically ill and how you can make your day less horrible. Maybe to be able to help a significant others to someone who’s ill and I wanted my ‘yoga business’ to get going. But the helpful posts have been few and my income from my business is zero. No, I’ve had to revise my goals a lot this year. But I’ve managed to do 4 short films about yoga for children in wheelchair. Another day I’ll try to post at least one of them.

But for now;

I wish you all a happy ending of this strange and shitty year and a considerably better new year!!! Just bring on 2021 - I think I'm ready for it.

Or is it really a failure? Isn't it just you learning about yourself and your

ability to adapt to new circumstances?

Goal assessment for 2020
All of you probably wonder ‘ what the *biiip* happened this year? You had plans and thoughts for this new decade, your family, your friends, your hobbies, your workouts etc, etc. How did you manage seeing your plans just float away with this pandemic flue? Did you revise your goals, adapt them after this new situation or did you float away too with the pandemic, not bothering to even try to set up things you wanted for yourself and your close ones?

Feelings of guilt

I do feel guilty for writing a post when I haven’t looked at your comments for… I don’t no when. ‘Feeling guilty’ is something I’ve been working hard with for years, but I’m guilty of ‘feeling guilt’ about most things in life. In the goals I wrote for this year I wanted to get rid of ‘feeling guilty’ and always ask my self ‘why didn’t I say/do what ever it was about’? I’m still working on that goal.

But I do feel disappointed that I’ve had to prioritize other areas of my life when I know that amongst all those spams are comments that warms my heart. And soul! Thank you all that have made so kind comments! When I started to blog it wasn’t about comments, it was about hopefully help someone with some aspect of having a chronic illness so these kind comments I’ve gotten are a bonus for me!

Me not having the time to go thru your comments has made me stay away from the computer and just write ‘a little something’. I’ve felt, and am still feeling, ungrateful for your comments. But I want to say to you, from the bottom of my heart; THANK YOU!!! I will read them.

2020, do I need to say more?

Well, this year has been strange for all human inhabitants of this world in some way or form. It has given me experiences that I didn’t even imagine me having to experience, not only the experience of a Pandemic flue. I’ve felt my body decay due to anemia that prevented me from doing heartbeat-increasing workout. That lead to even more decreasing of my physics… When I’ve gotten my two bags of blood, my first transfusions ever, I was  not in a good shape. On top of that I’ve had a cold more than I’ve been healthy from the beginning to the end of this ‘God forgotten year’. So now I’m not in a good shape. Though, importantly, I’m still able to walk a couple of kilometers. And I’ve been working out more frequently now than in the beginning of the year. But I really need to get better working on my cardio.

The pandemics effect on my family life

It caused that I wasn’t able to visit a close ones deathbed. He lived more than two hours away from us – and due to the COVID regulations and me being in a risk group, I wasn’t able to go there. And I missed his funeral.

My daughter have been to school via the computer at home. It meant that I’ve gotten the role as teacher every now and then on subjects I’ve needed to read about to be able to help her at least a little. I can’t deny that I’ve appreciated having her home to some amount. She’s so old now! I can’t fully get that to my mind.

My sons school has been open since he’s still in compulsory school. But for even the simplest cold he had to stay home due to the risk of having the COVID. The same goes for my husband – for the simplest cold he’s had to stay home from work. Me being cold almost all the time is probably the one who has spread the colds… But I don’t get how I’ve gotten them? I’ve been isolated due to COVID almost all the time!!!

Thankfully none of us have tested positive for COVID! Even though the kids have classmates or classmates families that have tested positive. And my daughter have been out with friends to restaurants, shopping malls and partys… I do understand why COVID increased in those ages. They don’t really seems to get the urgency staying home. Yet me, my childrens grandparents and my sister in law are in risk groups. This has caused me a lot of headaches due to the fact me not being listened to when it comes to the importance of not being out and about.

Not being able to meet family and friends

This causes pain in your soul, as you probably have noticed. The fact that we live in one of Swedens rainiest citys hasn’t facilitated meeting others. It is not just to decide ‘we’ll meet then out there’. It isn’t fun being outdoors freezing and wet… Sure, FaceTime, ordinary phone calls, have been used, but it is not the same thing. Better than nothing. But my best friend isn’t quite comfortable with ‘that kind of dates’ so… Miss her! Met her for ten minutes outdoors when I gave her my christmas present.

I miss my sister and her family. Since her wife is more sensitive than me for infections and since I’ve been having colds all the time… 

But…

Before the pandemic showed up and in-between the periods of stricter rules I’ve been able to meet some friends. And my sister and her son was here for a short visit at my parents house. So they came to my house and met my family out on our wooden deck and had coffee. We had to have warm clothes since it was in the beginning of autumn but it was cozy! And her son, now 7 years, and my kids 18 and 14 years had a great time!

On Christmas day we met up with my husbands parents, two of his brothers with their families and significant others to two of my childrens cousins. We were down by the lake where my husband and his brothers grew up and   grilled a lot of sausages. 

 

The positive side of COVID

Can’t believe that I’m saying this, but yes, there is a positive side. And no, I would still prefer that the COVID never existed.

So what is it about this years experiences that have been positive? Well, the likelihood of being outdoors this much just to see friends and family would not have been without COVID. We would have met indoors instead. Getting air is healthy 😉

Goalsetting

I wouldn’t have thought this much about what’s important to me. The goals I set before  this year have been examined thoroughly during the year. Instead of getting disappointed in myself for not getting toward my goals I’ve tried to think ‘how can I do this differently to get closer to my goals?’ . Some of my goals I’ve just crossed over and written ‘COVID’ or ‘Anemia’ or something else.

 

Mäkse Life Planning

I’ve really gotten in to the concept that Serena from Mäkse Life uses in her planner. I can’t recommend her planner enough! This content and her recommendations of how to look on the goals your setting up; that they aren’t cut in stone. They need to be revisited and possibly revised or deleted. Watch her Youtube-channel! I’m using a bullet journal instead of her planner since it costs a lot to get her planner to Sweden and I’m not particularly full of cash… There’s a lot of materials that she offers for free and with the help from that material I’ve been able to integrate her method in my Bujo.

 

Why, why, why do we need to set goals and always plan

No, we don’t. You can fly with *what ever the saying is in English* and take the day completely as it comes. In some way that is just what COVID made us do. But for me it keeps me reminding myself why I want to achieve something and how I’m able to get there. This ‘why’ is so important to me. The things I do should be something that me or my family gains something from. I need to do my workout, yoga, meditation to keep my body as healthy as this *biiiip* body of mine is able to be. And since I feel better doing workout, yoga, meditation I get an easier person to live with and maybe I’ll also become a funny person to share a house with…

Just an example of how I think. Our life is so different compared to many other families. Im not saying that they don’t have struggles, but their struggles are unique to them.

Our struggles are unique to us. And by having my goals for me and my family in mind I can plan mine and my family days in away that they are less burdensome.

My family’s struggling with me becoming more and more a disable person who’s not able to do things or go places where I’m use to. We went out for a walk in the nature by the lake we live by. Where we went is a very beautiful place and the hike there is filling up your energy level. But this time…

Our walk that would have taken my family 15-20 minutes to take ended taking an endless time because of my body. In the end my husband more or less had to drag me towards the parking. And at the final end he put me on a stone beside the road and got the car in which our kids and dog had already been for a long time. 

I cried and I cried. The people in the windshield where I was sitting had seen me the last meters so deep inside I figured out that they felt for me. But as I sat there I felt nothing but pity from them. That made e cry even more. But mostly I cried because I now knew that I never would be able to hike there again considering the narrow paths, stones and roots. 

And now my goals comes in place…

Figuring out my bodys capabilities as it is ‘right now’ has been one of my goals. I have added a walking stick when I’m walking to enable me taking walks despite my bad balance. I’m taking longer and more often breaks than I had to before. I’ve changed my workout so it fits my physical abilities. I’ve changed at what time I’m going to bed and when I get up so I will get the most out of my days accordingly to what my body allows. 

I’ve changed so much that when some days had passed from this defat  at Helgö (the place of our hike) I thought “are you just accepting this? You love the lake, you love to walk in the forrest! Are you just letting these things go without trying new ways, other ways, to enable these kind of hikes?”

Result of setting goals

My goals forced me to become me again. Me, who finds solutions. Not giving up without a fight (which I’ve tended to do many times). I tried to work when the body said ‘no’. I found a new way to get myself a meaning when I’m not able to work. No, I sat down and went through what had hindered me on this hike. And I found ways to manage those hinders and I will damn it try these options before I call it a quit!!! I will be back there. Bringing a large thermos with coffee (with milk) and something good to chew on and a blanket to sit on. That this hike normally would take 15-20 minutes aren’t important. I just to have to made sure that it can take a couple of hours to do this. But it’s oh so worth it! You should see that place in the spring. Or in the summer. The birds, the green trees, the forest flowers, the rocks going into the water. It’s a perfect place to recharge your batteries. Especially if you have a body and mind as I.

 

What do I really want to achieve with this post???

My intentions this year were to share more about being chronically ill and how you can make your day less horrible. Maybe to be able to help a significant others to someone who’s ill and I wanted my ‘yoga business’ to get going. But the helpful posts have been few and my income from my business is zero. No, I’ve had to revise my goals a lot this year. But I’ve managed to do 4 short films about yoga for children in wheelchair. Another day I’ll try to post at least one of them.

But for now;

I wish you all a happy ending of this strange and shitty year and a considerably better new year!!! Just bring on 2021 - I think I'm ready for it.

I’m genuinely apologizing to you!

I didn’t mean to disappear like this! I didn’t plan being away this long nt writing or reading and responding to comments.

My physical status have gone crazy; it has just went down and continued doing so. With this short post I just want to shortly explain that right now I’ve been forced to change my priorities – I’m just doing what my body allows which is not much… I spend most of my days in bed right now and I’m in the beginning of my doctors ‘investigations’ of what’s wrong. So I don’t know if I’m like this because my MS has gotten worse or if it’s some kind of virus or bacteria that’s messing me up. This moment I’m waiting for the answers from my test for bacteria in my urine and on my Cover -19-test. Not until I get answer of my Covid-test I’ll be able to leave the prescribed blood tests. That is if my Covid-test is negative…

You just have to love Covid… Me being cold most of this year hasn’t helped things out. But at least I haven’t had Covid! Yet, that is.

My intentions and hopes are that I will read all comments and I still want to have ‘yoga classes’ on my YouTube channel. But the lack of strength in my muscles, it feels as if they are filled with jelly, and the fatigue is killing me.

I beg of your forgiveness and pleas be patient with me and this blog. I need to learn whether this state of mine is going to stay or, hopefully, temporary. When I know I will tell. Maybe I can make short posts like this, not caring about SEO, keywords or the look of the post. But just to show you how I tackle my oh so tired days.

Bye for now. Yours sincerely,

Fina.


PS! The worst thing about the picture above is that it really shows what I look like…

I didn’t mean to disappear like this! I didn’t plan being away this long nt writing or reading and responding to comments.

My physical status have gone crazy; it has just went down and continued doing so. With this short post I just want to shortly explain that right now I’ve been forced to change my priorities – I’m just doing what my body allows which is not much… I spend most of my days in bed right now and I’m in the beginning of my doctors ‘investigations’ of what’s wrong. So I don’t know if I’m like this because my MS has gotten worse or if it’s some kind of virus or bacteria that’s messing me up. This moment I’m waiting for the answers from my test for bacteria in my urine and on my Cover -19-test. Not until I get answer of my Covid-test I’ll be able to leave the prescribed blood tests. That is if my Covid-test is negative…

You just have to love Covid… Me being cold most of this year hasn’t helped things out. But at least I haven’t had Covid! Yet, that is.

My intentions and hopes are that I will read all comments and I still want to have ‘yoga classes’ on my YouTube channel. But the lack of strength in my muscles, it feels as if they are filled with jelly, and the fatigue is killing me.

I beg of your forgiveness and pleas be patient with me and this blog. I need to learn whether this state of mine is going to stay or, hopefully, temporary. When I know I will tell. Maybe I can make short posts like this, not caring about SEO, keywords or the look of the post. But just to show you how I tackle my oh so tired days.

Bye for now. Yours sincerely,

Fina.


PS! The worst thing about the picture above is that it really shows what I look like…