If you know someone with MS, you may have heard them say they’re suffering from fatigue, meaning MS Fatigue. If you don’t have MS, but replied that you get fatigue sometimes too, you have proved that you don’t understand.
When you have MS, being a bit tired can be fixed up by a sit down for a while, the same as anyone else. When you have MS and you’re fatigued, that bone deep desperate, that sets in and just won’t go, then you know what fatigue truly is. This kind of fatigue, MS Fatigue, will need more than a sit down ‘for a while’ to get over it. It may need a few hours sleep at the end of the day, and then a good night’s sleep after that.
This linked article describes it well. Some days, you know you don’t have a full tank, and you won’t be able to get anywhere close to where you may have wanted to go. Or as far as other people want you to go. Maybe the next day, you could do it, but with that crushing fatigue, you know you have to stay home and rest.
It’s a frustrating thing, for both the sufferer and for their loved ones too. I can imagine it’s frustrating if you employ someone who has MS, and sometimes can’t get done the work you want them to do. Be assured that person is frustrated too, and isn’t just casually staying home, or working slowly. The issues need to be properly explained to employers, I think, but I know some people keep their MS diagnosis, and just try to ‘soldier on’.
For me, this was not an issue. I left the full-time paid workforce after the birth of my some nearly 22 years ago. I’ve done some paid work since, but only part-time, and not much since I was diagnosed with MS in 2010. I’m a writer, and some of my writing brings in some money – but not a lot of money. Fortunately, I am living with my husband who is also my carer. He has enough money for the three of us to live a reasonably good life. I’m eternally grateful for that. If I had money stresses in my MS life, Id be in a much worse position.
I also do volunteer work, related to writing. I have great friends, both other writers, and assorted others. I plan my time, staying home if fatigued, but getting out and about when I’m feeling good.
That’s how my MS life goes, I’m doing lots of interesting things, but I know that could change at any moment. I’m living a relapse free life, going well with my current medication now. Next week though, I don’t know I’ll still be doing as well. and I have no way of knowing what the next week may bring. By good planning, and by listening to what my body tells me, I’m doing well. I don’t take advantage of it though, and I do my best to eat the right things, and to do some exercise. If I look after my body, I hope my body will keep doing the right thing for me.