Always, always being Fatigued
I can not understand how I ever gonna be energetic again. My Fatigue just gets worse and worse. To get rid of the Fatigue as much as possible I need to listen, but just partly, to my body. I am gonna tell you all that I know and what advices I have been given concerning this symptom. Every advice will not be good for everyone because we are individuals. What works for me is not necessary helping for you. Managing Fatigue is much a trial and error to see what can be helpful for you.
Just saying There is gonna be links to Amazon and maybe other stores down below. These are not affiliated Links but I want you to see what the aids' looks like. Amazon is a place I have seen that many peoples goes to so that is why I have chosen Amazon as an international alternative. I have not checked the aids' price tags why it is possible that you might find cheeper alternatives. I have personal experiences of the swedish (?) site www.gulare.com
Symptom management PPMS/RRMS/SPMS
I am sorry to say this, but most treatments against MS-symtom are not cures; they are learning how to find strategies to manage the symptoms. You can say that the symptoms have got symptoms too. E.g. having the MS-symptom Fatigue can make your ability to think difficult. At the same time is a worsened ability to think a symptom of MS. The treatment is almost the same wether the symptom comes from your MS or from a symptom of MS. That means that many of the symptoms and the treatments I would have to describe many times and it could be very confusing to you. I am still pondering on how to make it clear and easy to read. I will do my best to share the strategies I have been taught .
Do not forget that there are others in similar situations as you, people with the same diagnoses and similar experiences as you. They can be a brilliant resource for you when you are looking for advice.
The symptom of Fatigue
First a little bit more about fatigue. Factors that facilitates for someone with Fatigue are, approach, your interest, motivation, having time, repletion, no interference, structure, routines and experiences.
Management techniques can be divided into:
-Internal techniques; have strategies, visualisation, associate, structure, verbalize (I am finally allowed to talk to myself!) and exaggerate.
-External techniques; calendar/planner, notebook, noticeboard, smartphone, different sort of Apps on the phone/pads/computor, mind maps, using a timer, taking smaller breaks every 20 minutes. Many studies have shown that breaks every 20 minutes have a positive effects on both our mind and body function.
Here is a picture of my brain central, my memory; my heavy planner.
Diagnostic of your Fatigue
If the healthcare should be able to help you they need to know which areas that are difficult for you. They need to know your anamneses and statues, why they might ask about
- Your eatinghabits
- blood tests to out rule that you lack of i.g. iron or any thyroid substances.
- The time of the day is the Fatigue bothering you
- Your medications – is anyone of them causing the Fatigue. It is not uncommon that the medicine you get against relapse or getting worse in your disease (in my case antibodies) can make you tired/extra tired the week/weeks after you received it
- Stress i.g. do you feel that the ones in your surroundings have too high demands and expectations on you
- Smoking Smoking have negative effect on your nerves and can give Fatigue
- Other diseases besides PPMS/MS/SMPS
- frequent desire to micturate
- Physical workout The increased physical effort the nerve signal in damaged nerves are slowed down. The result of this is that the nervesignals are being slowed down.
These are all factors that can effect you in a negative way. The goal is to eliminate or, at least, decrease them so their impact of your Fatigue will be lower. By asking these questions the healthcare gets a picture of your problemareas and can plan out the strategies that can be a help for you. With your situations at home, at work and in your spare time. It is not every person with PPMS/RRMS/SPMS that suffers from Fatigue but it is a very common symptom.
Fatigue on a scale
To understand how high the Fatigue affects you there are different rating scales of the Fatigues intensity. A couple of examples are Fatigue Severity Scale, Modified Fatigue Impact Scale and Mental Fatigue Scale. Some are specific for MS, some are for all sorts of Fatigue.
Medicines that you have prescribed your self
It is important that you remember to tell your doctor if you are taking vitamins, food supplements or any other unprescribed medicines. The reason for this is that they can react together with other medicines in a negative way.
You need to think of saving your energy
You do not have the same amount of energy as a healthy one. And for a healthy one there will not go any extra energy to keep that persons balance, to keep that person standing. Answering a phone, listening to his or hers children, writing something down, holding a potato peeler, picking up the sock from the floor will not be a hard task for most of the healthy persons.
For someone with our diagnoses lots of energy goes to just doing a simple task as answering the phone. Because there are several steps our brain takes even doing such a simple task as that. So we need to learn how to save energy even doing simple tasks.
When our energy level has reached its bottom it will not be filled in a long time.
Your body and mind needs to be disconnected from everything to be able to handle your everyday. Not taking your rests will only come back at you later in form of e. g. headache, not being able to think clear, making you cry of tiredness, making you even more tired the next day.
There are longer breaks
We can get around this problem by planning as much as possible. Learn how to think through how much you need to rest, honestly, in a day. The amount of rest you will need varies from day to day, but you will eventually learn what amount that is your minimum and your maximum resting time. 10-15 minutes are enough for some and for others the time needed is 2 hours. The recommended maximum is 1,5-2 hours at the time.
And there are shorter breaks
And there are shorter breaksYou will learn how many times a day you will need to take a break but they recommend that you take a short break every 20 minutes. These every 20 minutes-breaks are just to stand up and stretch out. Make sure that your surrounding is relaxed and quiet. Having headphones in your ears or using earplugs in noisy environments are alternatives. See how they affect your night sleep: having difficulties falling asleep may be a sign that your breaks are too long but also that they are too short. Trial and error. Trial and error. Some days it will be impossible for you to take longer breaks, and taking shorter breaks every 20 minutes… I know, but these are the recommendations.
“You should have lots of energy since you went to see friends yesterday”
Unfortunately you do not work that way anymore. You might have refilled your cup of happiness but you had to use a lot from your cup of energy.
Meeting friends and family, going to a party, being in school or doing something else where you need to be focused or social takes a lot of energy from you. It is difficult to understand that something that gives you joy and energy cost so much energy. E.g. I need to take into the plan that the day after I have met a friend for coffee or celebrated a relative or having dinner with my co-workers I need more rest than a normal day. I can be hungover the day after I have met a friend because it takes so much energy.
Learn to relax
There are many tips and tricks on how to relax. Everyone who has been stressed out knows how difficult they are to follow when your body is really wind up. You can not just say “ok, today I will use this trick to relax” and expect that trick to work for you. To be able to relax you need to practice and practice and practice. You will probably need a whole array of tricks because when your feeling one way you need to use this trick. And if your feeling another way you will need that trick.
I will go further into tips and tricks further on but for now I recommend you to look around for different forms of relaxing. Meditation, guided relaxation thru a pod or Youtube, taking a bath, a candle + a pen +a paper or diary, curling up with a good book, taking a class in meditation, guided relaxing with a physiotherapist. There are so many fishes in that sea to chose from. But finding the fish/fishes that is/are good for you, that is the hard part. So my advice is therefore; buy a very good fishing gear!
How to cope with Fatigue
First you need to understand and accept that you have Fatigue, that it can not be treated as normal tiredness. And this is not easy. You might have to see a therapist to be able to handle all emotions Fatigue stirs up. Feeling like being betrayed of my body is on thing that I feel. Other thoughts it gives me are not being enough, not doing enough, being in the way of others and being a burden to them, both at home and at work.
Somedays when the Fatigue is really horrible, I feel that ending my life is the only way to release my family and others around me (included work) from me. Feeling that I am just being a burden for everything. Yes, it is easy to be sensitive and get depressed when having Fatigue. Coping is a long process and I have a bit left to reach the goal of coping with my Fatigue.
My intentions are to come back to this really important subject.
Have a plan
I would be lost without my planner. Everything of importance is in that brick of a planner. Somedays there is so much written in it and somedays are empty. By the end of every week I take a look at the plans and meetings and other events upcoming week. I go thru my mails to find out if there is something that needs to be planned out. Then I can see what days I need a more structured plan or what days I can take it as it comes. I see what days I can do which workouts and where I can do something that gives me joy, maybe do something with my kids.
Some days I just shake my head when I look in my planner. Will I even be able to take a breath that day when I have all those things to be done? Those days are the days when it is really important for me to take a second look at my planner. What do I really need to get done that day? Can something be done another day? It will be like a revelation to you (or at least it was for me) how many times we stress to get things done when we actually really do not need to do them.
Move the things you can take care of to another day and give yourself breathing room on those stressful days. To take care of things when you are being under stress risks that the thing will be haphazardly done. And that leads to more work for you.
Find what is important to you
Something all the specialists my rehabilitation clinic have emphasized is that you need those things that makes YOU happy. Make sure to have something that gives your life meaning. That does not mean that you have to jump on a plane to the other side of the world everyday. Maybe you like to read or write or paint or bake. Whatever you like to do you need to put that thing in to your plans of the day.
This is an important part of our journey. We need to at least try to have positive things or persons or hobbies in our lives. Why else should we live? A life with out joy would, to me, be meaningless. I am on this earth to live. Not just trying to survive. I admit that many of my days just are just about surviving. But if everyday was just about surviving… No thanks!
Family and Friends
Family and friends really need to be informed about what Fatigue is and how it affects you. Different persons have different abilities to understand. They have different abilities to be empathic. Some of your close ones might need having the possibility to get that kind of information from a specialist (e.g. a doctor, nurse, physiotherapist specialist on this area) on Fatigue.
It is difficult living with someone who “suddenly” needs to take rests several times a day. Someone who “suddenly” can not do all the chores they used to do. Someone who “suddenly” splutters and do not remember what you just said. Someone who “suddenly” have forgotten how to do simple things as wash-up the plates, who is standing for a long time before he/she remembers how to and starts. It is not easy for others to understand how overwhelming all feelings for both them and the one who has it. It can lead to frustration for the close one too.
I have seen just how difficult it is for the close ones. The struggles for them. The difficulty in understanding why you have energy to e. g. draw when you just said that you could not help out with the laundry. I have had my diagnosis for three years now and still I see how the family struggles with me always being tired. Yesterday me and my daughter were going to a mall cause she needed clothes. But when she realized that I was going to take my wheelchair with me she totally broke down and refused going with me. I would be a reason for people to stare at us which she did not want. It would be embarrassing.
That day my whole body was so terribly tired. There for I planned to use my wheelchair as a walker at the mall. If I had the wheelchair I could also sit in it while she was trying on clothes. I could not go without it to the mall. No matter what I said or how I explained why I needed it she still refused. It ended up with me taking a hobbling, short walk with our dog and dad going with her to the mall.
A part of me understands her reaction. And I have only used the wheelchair once before and that time she was not with me. I felt like getting a punch in my stomach. I was an embarrassment for her, not because of my person but because I have PPMS. It did not matter that I know that having a illness does not make you embarrassing and that she deep inside knows it, cause it hurt anyway.
So yes – having a really long talk to your close ones and they having the opportunity to talk with an expert or having a therapist they can go to, that is necessary.
A short summary of todays post
So plan out your days. What is it you really need to get done that day? When? Plan when you can get your rest When can you workout/take a walk? If you are going somewhere; do you need a rest before that, how long time does it take you to get there and get home from there, do you need to rest when you have been there? When can you do what gives you joy.
Yes. Having Fatigue really forces you to plan out your days to then let you relax cause you know you have your day under control.
I am so sorry for the lack of flow in my posts. I see that it is so but I can not seem to fix it. My 5,5 years at University screams back at me from the mirror and my face from today looks down on the floor, being really full of shame.
Which are the areas where your Fatigue is a real pain in the ass? Have you told those around you about it? What were their reactions if/when you told them? Do you feel that you are getting understanding from those close to you or at your work? I do hope we will be able sharing experiences. Now I am gonna force myself making waffles. It is the Waffleday tomorrow but I will not have enough energy to make them then. Cause tomorrow I am getting back to work after a longer absence.