MS fatigue… the invisible monster

MS fatigue The most common, yet most difficult to detect a symptom in multiple sclerosis. Aside from feeling exhausted, having to explain people over and over how different it is to normal tiredness, you often get a stigma assigned of “yeah, yeah, you’re just being lazy” or “sure, now keep walking, it’s probably not that bad.” Not everyone will express their opinion out loud, but people will think about why you’re “just not making a bit more of an effort”.

MS fatigue is more or less an invisible symptom and it’s hard to explain exactly what it feels like. Some people will stop talking, walking or you will notice changes in their behaviour. Unlike normal tiredness fit people feel after exercising or working 8h a day, MS fatigue is an overwhelming feeling. It can be brought on just like that, like you’ve hit a brick wall and you can’t move forward anymore. Or it can creep up on you slowly,like you’re feeling the energy run through your body to your feet and into the ground with each step you take.

People with MS experience fatigue in a different way: your MS tiredness could be more severe or less harsh than my fatigue. I have severe fatigue almost every single day, and someone else might have no energy fluctuations at all. Mine gets worse by doing more than I’m used to, or warm or hot weather, eating hot food or taking a warm shower while fatigue of someone else with MS might be brought on by different factors. Just like there are no two people alike in their MS, there are no two people alike in fatigue symptoms.

If you’re a person with MS yourself, you’ve probably heard of the “Spoon Theory”, a story of a girl with Lupus who explains to her friend how her fatigue gets worse as the day goes on, and she does so with assigning spoons for every bit of action she takes during the day. It’s a fantastic story and I always keep it in mind if I have to tell people how tired I am. But because I am me and I have a mind of my own, I have my own little story of how my energy gets depleted during the day. It’s called – true to today’s financial crisis in the world – My Body’s Recession Theory.” Ireland is going through a big recession, and so is my body because during my day, my energy is taken away from me bit by bit, despite staying-awake tablets and/or other methods to keep on top of it.

When I started experiencing MS symptoms, fatigue was the very first to arrive in my banking (body) system. I was very busy at work at that time, so I just put it down to working too hard, not getting enough sleep or doing too much after work. But after 2 weeks I just knew that the level of fatigue I was experiencing was just not right (major bodily recession arrived!). I’d fall asleep in the cinema (sorry lads, I hope I wasn’t snoring!), or on the bus or the train. I could hardly walk from the couch to the fridge or from my bed to the bathroom without just feeling absolutely wrecked. I will never forget how huge my fatigue really was, because I had never been this tired before. This set off major red lights in my mind.

Coming home from work, I had to lie down on the couch for an hour before being able to get up the staircase to my bedroom. A couple of times I was crying because I couldn’t get up the damn thing and I was angry at myself for letting myself be this tired. I’d sleep during weekends while my then-boyfriend was off doing things alone. And still, Monday mornings would come around and I still felt that tired. That. Was. Just. Not. Normal. (“It’s recession here lady, why don’t you believe your bodily banking system has completely broken down!!!”)

Seven years later and my fatigue has become my biggest and main disability. I had quit my job because I couldn’t commit to my tasks and job anymore, I had become a liability to myself and to my employers, so after trying to decide for a year and a half if I would quit my job or not, I simply had to give in (“You now have €0 in your  body’s bank, your recession hit hard so you need to rest, sleep and relax from now on to raise energy funds!”). I loved working and I loved the company I worked for but physically it was getting too hard to stay awake, even after just two hours of work. On top of that, I had optic neuritis almost daily and left side nerve pain. Side effects of the MS medication meant that I was awake at night of aches and pains, and waking up completely shattered. Working from home helped somewhat but eventually it was all getting too much on too little energy.

I’m now retired, so I have a lot of time to work on getting energy units back into my body’s bank. When I’m home, I sleep/rest when I feel the fatigue worsen, or if I’m somewhere else, I just sit down and relax before continuing what I was doing. I take Provigil, my staying-awake tablets to be a bit more alert and active, and basically rest, relax and make sure I don’t stress over silly things (“Good work girl, you now have 20% more money in your  body’s bank woohoohoo!”). I meditate, do yoga, try to breathe right and exercise. Obviously, no strenuous exercise because this would increase my body’s temperature and then nerve pains start appearing again. You learn to adapt to the tiniest bits of bodily changes so I now take lukewarm showers, avoid hot temperatures or hot or spicy foods. The silly things you’d normally never think of, those little things are a big help! (“Now adding about €10 more cash in your body’s bank, isn’t life grand!”)

Because I never wake up completely rested, I always start my day at about 60% of what I should have in my bank to be able to function at a somewhat “normal” level (Oh yes, my body’s bank will never have €100 to start my day with, but I’ve accepted this recession in my body and I can live with that, oh YES I CAN!)

So I might only have 5% energy left at the end of my day, or maybe 30%, it will always differ from day-to-day and from how much rest I was able to get during the day. But I am always, yes… Always, operating below 60% energy, and that’s very little if you want to do lots of things. MS fatigue IS NOT like normal tiredness so getting the energy back after one night of sleep is not going to happen.

I am not the fastest walker anymore, but no one said that walking to the shops or to the bus had to be a contest of who could walk the fastest. For that reason I ask my walking companions to please understand that I just can’t walk any faster. If I can, then I will, but most days I just have to put a lot of physical exercise into trying to walk fast. So please believe me when I say that I do not walk slowly because I don’t want to put more effort into it, but I am walking slowly because that’s the only way I can walk. I will not give myself more aches and pains when I definitely could do without them. (Uh-oh… Walking at your pace is depleting my body’s bank by €25 and that’s how badly the recession hits me!)

I am also not able to be awake 12h a day anymore, but I now do what my body asks or tells me to. If I need to rest, then I will rest. I will not be pushed into doing things when I feel I am physically not up for it. Too many times I’ve been overdoing it and I ended up paying the price for it for about a week or longer, or with hospital stays with yours truly attached to an IV steroid bag. (“This is your body’s bank calling, can you please put in 30% of what you have left right now?”)

But you know what? I might be retired at a young age, but you only got one body, one temple that whispers when to relax, to meditate and to sleep and finally I’ve started to listen to my body. So right now, sleep is just about the best thing in the world!

And on that note, I am off for a nap. I am starting to think that those who don’t believe in naps, should be avoided! :D)

“Thank you for restoring your energy levels to your normal banking agreement of €60 per day, may you try to get your energy levels up to 100% soon.
Your Recession Buster!”

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

6 thoughts on “MS fatigue… the invisible monster

  1. It is so unreal how differently MS affects people. I can do strenuous exercise and feel rejuvanated, however, if I walk out in the intense heat… sleepy time! I feel like the fatigue is so bad, because I have to remind myself when walking, pick up right foot, move forward, put down, lift left foot, move forward, put down, don’t trip, maintain balance.. it is like the little things that we once did as we breathe we now have to remind ourselves… Great post!! I have a blog that I just started discussing MS, feel free to check it out!

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