It’s an interesting phenomenon, this MS fatigue. Lots of factors affect it, including sleep, hydration, and exercise. Sleep I can manage to get, hydration is easy to maintain (and also easy to forget), but the exercise is not always steady.

I have poor balance due to MS. I often bump into things, using the nearest piece of furniture or wall to “catch” my balance. I used to say I “lost” my balance until a physical therapist gave me that new term. You only lost it if you actually fell. Otherwise you can say you caught it!

Balance is a complicated issue, and many functions within the body affect it. If you’re interested in the details, you can read more here: “Causes of balance and walking problems“. One thing that really affects me is the leg weakness. So when I’m not exercising on a regular basis, my legs get weaker, and my balance suffers greatly.

I’ve said before that I walk my kids to the bus stop in the mornings. The sub zero temperatures here in Michigan prevented us from walking for several weeks. I am keenly aware of the effect this has on my body. My leg muscles weaken very quickly. Lots of leg muscles are used for walking (roughly 200), and walking requires balance – that is, if you care to stay upright – and so it takes more effort for me even to walk around the house. Hence, the fatigue.

It frustrates me that this can spiral down so quickly, but the upside is that I can also turn it around just as quickly. Using my cane helps in the interim, as it helps me maintain balance and thus requires less energy. However, after just a few days of walking to the bus stop and walking the dog around the block, my legs are moving much better already. That, and I can almost say I have ENERGY. Almost. Still, it’s a pleasant change from the days of fatigue. I’ll enjoy it while it lasts.

Fatigue is hard to describe, but it is very, very real. I would say I struggle with it, but there isn’t much struggling going on. I just don’t have the energy. So, I live with it. I manage.

Thankfully, it’s not all the time. It comes and goes on a pretty regular basis, however. So I am always hopeful that it will go.

Here’ s what fatigue looks like here in my world: I wake up at 7 to help get the kids ready for school. On days when it is not below freezing outside (which hasn’t happened in a minute), I walk them to the bus stop. After the bus comes, I walk back home. I slide into my warm bed and let my mind race until I drift off to sleep. Because my mind doesn’t seem to reach the level of fatigue that my legs do.

I sleep for a good three or four hours, waking up slowly from some weird dream I won’t remember three minutes later. I lie there, willing myself to get up. When willing doesn’t work, my bladder is more convincing. I drink a lot of water.

See, my fatigue generally seems to be in my legs.  They just get feeling so heavy. It takes more effort than normal to move them around. I’ve had full-blown MS relapses where I couldn’t lift them at all, so this leg fatigue is sometimes worrisome. There is always the possibility that I will go there again. The nerves that control these legs are scarred, so they’ll never be right.

However, if I can get to where I need to be, and can sit there, I do fine. I can write, read, crochet, fold laundry even, all while sitting down. The only things I have a hard time with are mostly in the kitchen (dishes, cooking). I remember my grandma used to have a tall chair/stool type thing in her kitchen, and I always loved sitting on it as a kid. Maybe I can get one of those for my kitchen. Just something to allow me to sit up high enough to reach the counters comfortably.

Fatigue is when you wake up from a 4-hour nap and you are still tired. Fatigue is wondering who strapped lead bricks to your slippers. Fatigue is getting up from a nap and just wanting to go back to bed. Fatigue on days like these is asking, “Where is my motorized scooter?”