PPMS/RRMS/SPMS symptom – Fatigue

 

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.

 

No_interferece_with-aunty_acide

 

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.

 

my_planner_is_my_bible

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
  • Sleepinghabits
  • 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
  • Depression
  • Smoking Smoking have negative effect on your nerves and can give Fatigue
  • Alcoholhabits
  • Other diseases besides PPMS/MS/SMPS
  • Pain
  • Spasms/numbness/sensations
  • frequent desire to micturate
  • Coffeehabits
  • Anxiety
  • Snorings
  • Infections
  • Drugs
  • 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.

Apology

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.

42 Replies to “PPMS/RRMS/SPMS symptom – Fatigue”

  1. What page are you referring to? One of mine or do you feel that the post was like someone else? It is very possible that someone else with PPMS/MS has written about the topic. Please feel free to give me feedback, that is the only way I can evolve.
    Thanks!

  2. First of all I would like to say wonderful blog! I had a quick question which I’d
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    1. Hi there!
      I must admit that most of the times when I write it is because I need to get things out of my head. Mostly because I’m being sad or angry…
      If I feel for doing some writing, or just decide that I should write but I do not know what to write I just sit down on my bed or in our “office”,or (if I’m home alone)in our livingroom opening the book and start to write about what I’ve done that day. Sometimes I light a candle and sometimes I have a beer or a glass of wine to make the writing a “cozy moment”. I’ve found it difficult to find a moment everyday to write, even if I decides to do it a certain time every day. So I’ve decided not to feel bad for not being able to do it, I just accepted that I’m the kind of person who can write only when I feel for it.
      Hope you got your answer somewhat. I know I rambled above. But try out making it a cozy moment, a “you time”, and if you don’t know what to write about write about your day. Sometimes when you do that your writing may go into a sidetrack that turns out to be something you get lots of ideas to write about. Or just write down the lyrics of a song you feel represents how you feel that day.
      Best of luck!!! And thanks for reading my post!♥️

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    1. Ha ha ha! (Yes, I’m really smiling) Next time I stumble and fall on the floor I will check if there’s any money down there while I’m down there. Maybe it’s a coin I stumbled up on? I will admit that I actually felt rich for some hours the other day; I wasn’t at work (since I’m not able to work… but we’ll pretend I could), I laid down on the ‘porch’ of the house my family OWNS (yes, I was grateful for having a home), the sun was shining and I could wear t-shirt even if it was the last days of a September in Sweden and I had my dog beside me. I felt better than I’ve done for weeks. A small moment like that I wouldn’t have appreciated as much as I did that day if you had asked me some years ago. But yes, right then I was rich. (But of course: if someone had called me that day asking me if I wanted some millions on my bank account I wouldn’t have said ‘no’ 😀 😀 😀

  6. I was curious if you ever considered changing the structure of your website? Its very well written; I love what youve got to say. But maybe you could a little more in the way of content so people could connect with it better. Youve got an awful lot of text for only having 1 or two pictures. Maybe you could space it out better?

    1. I’m still very much a newbie! I’m grateful for your insights and will try to think about that. Unfortunately I most often have a certain amount of energy that I can allow going to blogging which many times leads to my decision: I rather post something about the ‘current subject’ than nothing at all. This blog is more an outlet of being able to do something good for someone and get my words flowing. I prioritize that higher than the layout. I hope this comment to your comment doesn’t offend you – you should know I appreciate others points of view since they can make me evolve as a person. And writer and blogger. I’ve got plans for the structure of this blog but suddenly my physical state changed and I’ve put my plans for this blog on ice for an indefinite while…
      Thank you for your comment!

  7. Wow that was strange. I just wrote an really long comment but after I clicked submit my comment didn’t show up. Grrrr… well I’m not writing all that over again. Anyhow, just wanted to say wonderful blog!

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    1. As for now I’m laying low with my blog. My body doesn’t allow me being active here or make decisions about my blog and its content. But if my days gets better and will allow me to work on developing my blog I will definitely have you in mind! (Your comment will be visible to me when I read the comments, thankfully, since my memory isn’t top notch right now 😉 )
      Thank you for your comment!

  9. Write more, thats all I have to say. Literally, it seems as though you relied on the video to make your point. You definitely know what youre talking about, why throw away your intelligence on just posting videos to your blog when you could be giving us something enlightening to read?

    1. If I post a video it’s because ‘just talking’ is taking less of my energy than writing does. That’s the reason. I always need to think of using as little energy as possible to have energy to the things I need to get done. As being a mother. Some subjects are easier to show than to write about. Thanks for your thoughtful comment. Critics and other people insights are good cause they make you think about what your’re doing. The ways we do things aren’t always the best ways. Thank you!

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    1. Thank you so so much for your kind words! I haven’t been very regular on posting and as for now, I’ve been absent for a very long time. My body’s dictating how often I’m able to write and I need to save my energy first and formost for my family. Which I’ve done and will be doing for an undefinit time. But I so hope that I’ll get energy to also follow up on my earlier plans for this blog! Thanks again!

  12. Awesome blog! Do you have any helpful hints for aspiring writers? I’m planning to start my own blog soon but I’m a little lost on everything. Would you propose starting with a free platform like WordPress or go for a paid option? There are so many choices out there that I’m completely overwhelmed .. Any ideas? Appreciate it!

    1. I’m afraid I won’t be to much help for you… But many many years ago I thought I would try starting blogging and then I used a free wordpress version. This time I thought and felt that I could commit more and I found that in certain occasions it would be a help if I had an own [my site].com. Therefor I read a lot on the web and I chosed the cheapest option that also would be enough for what my intentions for the blod were. I don’t know if I chosed the right web host but right now I cling to it. It’s such a jungle of decisions you need to take and things about settings you need to do. I don’t remember half of them. What I’ve done is to watch YouTube about the subjects or settings that messes with me 😉 When you start to write the most important thing is to have a topic for your blog that you burn about, that is important and interesting for you. Mine is living with/beside my MS and how to handle, manage, everyday that makes your life worth living to you. Also there are so many categories that falls under my main subject that I’m able to write pages everyday if I had the energy for that. Summary: choose a subject important to you and a subject there are tons to write about. Make a mindmap first. I did so. Write your subject and then see how many lines of different subjects you can draw from your main subject. If you after that get lines with subjects from your different under categories it’s even better.
      Best of luck to you!!! There are lots of help about how to start a blog out there in cyberspace!

  13. I’m really enjoying the design and layout of your site. It’s a very easy on the eyes which makes it much more pleasant for me to come here and visit more often. Did you hire out a developer to create your theme? Exceptional work!

    1. I’m so happy that it’s pleasing to you. To answer your question; I read blogposts and watch many hours of YouTube videos along side as I started the blog and after. The layout have change along the way and if I’m able to take up the blogging again I bet it will change even more… I’m still a newbie and since are so many much more professional websites out there I get so warm and happy when I read your words! Thank your!!!

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    1. Thank you so much! I don’t do newsletter since I known that my bodystrenght haven’t been enough to commit to a newsletter too. And in hindsight I know that that was the right decision. Maybe I will have that in far future but not now. I feel that I really need to be able to commit to be putting the letters up, and as it is right now, I wouldn’t be able to send one out even once a month. Thank you again!

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