MS fatigue one of the most difficult symptoms to explain and deal with. 80% of all MS patients deal with this at some point or another. Fatigue is way past a feeling of tired is to the point of absolute exhaustion. It’s the feeling that each limb is 100lbs heavier than it is. Just walking the few steps to a bathroom is daunting and overwhelming. It never fails you’ll be talking to a friend and you’ll say I’m tired (meaning fatigued because let’s be real no one talks like that saying “wow I’m fatigued”) and the response is me too. ITS NOT THE SAME!!! I know people don’t mean it, it’s human nature, because we don’t use the words “I’m fatigued”. It is slightly frustrating for someone, with any chronic disease, to hear the “me too”. Try putting on a hand weight of 50lbs and lifted your hand to just scratch an itch. When you feel like that, when it is so hard to even just lift your arm to scratch, you almost don’t care that you have an itch that’s fatigue. Now comes an urgency to use the bathroom but you feet have 100lb weights on them. You wish you had a bedpan instead of having to walk to the bathroom, that’s fatigue. Think of it..walk to bathroom, pull pants down, wipe, flush, pull pants up, wash hands, walk back. Seems silly but with the extra weight you legs and arms have on them, now imagine it…that’s how it feels for us when we suffer fatigue. Do you know how many times I’ve actually cried by the time I got to the bathroom because of the sheer exhaustion? You were just at that point of exhaustion that you cognitively can’t deal with anything else you just break apart. To just have an absolute meltdown because the smallest task becomes so overwhelming you just can’t do anything else but cry.
There are medicines that help, sure but they aren’t great. I use to take Provigil for years. It is for narcolepsy patients. I have fallen asleep many times on that drug. Sometimes no drug can help you if you’ve really reached the stage past exhaustion. There are many times I’ve also been so fatigued but I couldn’t sleep. Fatigue isn’t necessarily about sleeping. It’s not that kind of “tired” . Many times it is that I need to STOP MOVING. I need to just lay there like a sack of flour for an hour or two. Usually I’ll be fine after, at least right now that’s been my luck. HOWEVER if I do something it will take LESS AND LESS time for me to fatigue throughout the day. Meaning that if I overdo it and get fatigue once during the day, I know that I’m going to reach fatigue doing everything and anything throughout the day and faster, plan accordingly.
MS has so rhyme or reason. I could do one activity today and have a great MS day without any problems and do the same thing tomorrow and suffer all day. I don’t have a calendar that gives me a warning, MS symptoms might be difficult on Thursday. I don’t get an intuition that says that a fatigue spell is coming up so I’m going to cancel all my plans for the weekend. I just have to do everyday and deal. MS is also partly a mental mind fuck to a degree. The statement “but I was fine yesterday” goes right out the window because you might have been fine yesterday, your not today, but you could be fine tomorrow. DEPRESSION affects many people not just with MS but with any chronic illness. I can promise you WE HATE FEELING THIS WAY MORE THAN YOU HATE HEARING ABOUT IT. It mentally takes its toll on us all. We live with our symptoms 24 hours a day, 7 days a week, 52 weeks a year. We gets NO days off. Everything we do is a challenge. No matter what we are doing for the day. Just the shower is a complete ordeal unless I want to stay naked for an hour or two to rest before I attempt to get dressed. All activities need to be planned, spaced and prepared for. Even if it’s as simple as the shower. That is our life. That is anyone’s life with a chronic illness that is debilitating. Those are the silent symptoms of MS.