Coping With MS Fatigue
Fatigue is one of the most common symptoms of MS, reported affecting around 80 percent of MS sufferers. It is also reported by 40-60 percent of people with MS as their worst symptom, and it is the major reason why people give up work.
MS fatigue is also one of the most challenging symptoms for friends and family to understand, as it’s not visible and people think they can relate to it, mistaking it for tiredness. Well-meaning people say to me, “Oh, I get tired too, we all do!” I smile in agreement, but I get tired too and know the difference!
I’ve written a lot about fatigue in MS over the years as it’s one of the most common and debilitating symptoms we can suffer from. I have a friend with MS who had to give up work as she found herself hiding in the restrooms, unable to function as the fatigue got so bad.
I’d always thought of myself as lazy and was told often enough by those around me to get up and get on with things, but now I wonder where laziness ends, and fatigue begins? I wonder if the laziness I felt in my late teens and early twenties was just a manifestation of MS fatigue that I didn’t recognize as a symptom.
What Does MS Fatigue Feel Like?
Many people equate fatigue to being tired, mainly because this is the closest human condition non-MSers can relate to. When I’m suffering from fatigue, I certainly feel tired, but there’s more to it than that and I find it helpful to break it down into different parts of the body and examine the impact it can have on each part.
Cognitive fatigue or “Cog Fog” feels to me like cotton wool has replaced different key parts of my brain. I can have trouble holding a thought in my head or thinking a thought through. It’s like when a computer is working slowly, and I find things like cooking difficult when I feel like this.
Planning when to put different elements of a meal into the oven or microwave, so it all comes together at the same time seems like an impossible task, and I find I have to walk through it slowly in my head a few times till I imagine how it will work out.
I also find conversation challenging during an episode of Cog Fog. It’s like my brain hits the pause button mid flow and I find myself staring blankly at people before it resets itself and I can continue. This is often imperceptible to others, but I can feel it happening, and it’s frustrating.
Speech problems can also occur where my mouth feels heavy and getting words out can be difficult. Finding even the simplest correct word can also be a struggle.
Hands and Arms
I always have pins and needles in my hands, so I find things like typing get harder if I try and do it for too long. This isn’t quite the same as fatigue though as I can experience fatigue even when I haven’t done anything with my hands at all.
I was on the couch the other day as I felt particularly fatigued and I wanted to check my phone. I found that the simple task of lifting the phone to my face was so difficult. It was like the phone was too heavy or my arm was too weak to lift it.
I’ve also felt this when eating before; lifting the cutlery to my mouth took so much effort it almost wasn’t worth eating.
On a good day, I can stand for quite a while and find transferring from a chair to my mobility scooter fairly easy. When I’m feeling fatigued, it’s like my legs won’t hold my weight up, and I may as well weigh 1000 pounds.
I had this problem at work when fatigue descended during the day. I was in the disabled bathroom, and it took me six attempts, while grabbing onto the handrails, to stand long enough to do my trousers up! I was wearing skinny jeans, so I didn’t make it easy for myself, but I’d been able to manage it that morning without any problems!
Taking a shower is also virtually impossible at times like this, and I’ve spent many a day in sweatpants on the couch having not managed it before. This is ok at home but not a good look, or smell, for the office!