If you saw me and wondered what the most disabling feature of my MS is, you might say not being able to walk, because I’m in a wheelchair. Wrong!!!! It’s fatigue.Something like 80% of people with MS have fatigue and for most it is their most disabling symptom, even the one that stops them from working. It’s invisible, which means people can’t see what’s happening, which can often lead to people making unfair judgements.
At this point you’re probably thinking “we’ve all been tired – what’s the problem?!?” That’s what I would have thought too. There are so many ways to try to explain, but none of them really does it justice:
Imagine having the best night sleep ever and waking up more tired than before you went to sleep.
Imagine every time you lift an arm or a leg there’s a 20lb weight on it.
Imagine the thought of taking a shower being so overwhelming because you don’t have the energy to do it.
I could keep going….
There are two types of MS fatigue.
The first is Primary MS fatigue. It’s caused solely by the MS and it’s there all the time. I have that. No matter if I have the best day ever I’m still only out of bed for 8 or 9 hours a day. I’m only out of bed in the morning and in the afternoon. It’s 10:30am right now and I’m already thinking how long can I last before I go back to bed.
The second is Secondary fatigue. In this, things that happen to you cause your fatigue to get worse. These things include getting hot (weather, too much clothing, heating, shower), infections, pain, stress in all its forms (both good and bad – excited about doing something? Fatigue kicks in!)…the list goes on and on.
There are some medications that may help some people. I’ve tried them all and all have failed for me. None are designed for MS fatigue. Most of them are stimulants which isn’t fun. Your brain is going a million miles an hour and your body wants to rest.
Mostly you’re told to avoid the situations that can bring on fatigue. Avoid warm weather! Goodbye summer – it’s like a reverse hibernation!
I have what my neurologist calls a “rare and somewhat unique physical and cognitive fatigue”. Any stimulus means my body shuts down, I have very little movement and no speech. I can’t go to the shops anymore. The lights, the people, the noise. Too much going on. Not that great a loss, you might say, but Ian has to carry the full load of all the shopping.
Exercise is one of the things that might help alleviate some fatigue, but rather than pushing through the barrier, people with MS should stop as soon as they hit it, otherwise you may undo the good you have achieved. Me? I can’t exercise. Not even my seated Tai Chi class anymore. Why? Brings on the rare and somewhat unique…blah blah b;ah.
The biggest hit I’ve taken is no more music for me. No concerts. Within 20 minutes I have to leave. Many of you identify with me through music. Think about that. Yeah.
Got to go now…can’t type anymore… hope you know why