Getting Comfortable... or Not
It’s a typical night, where not much is going on, and I’ve settled in to queue up some Netflix with my faithful dog. My pup is my shadow, always by my side, so those that know us might be surprised that he is not sitting with me or even laying on me, but rather on the other side of my “L” shaped couch.
Increasingly difficult to get comfortable
As faithful and loving as my dog is, he’s also very smart. He knows that even when I go to the couch to crash and chill, I will be faced with what feels like constant movement, as I keep repositioning myself and struggle to find some semblance of comfort (instead of having to constantly move himself, he decides to sprawl out on the larger side of the couch like the majestic beast he is). Getting comfortable has become increasingly difficult as I deal with the daily pain and spasticity due to multiple sclerosis.
Sedentary doesn't mean comfortable
When many people think of MS, I think they picture the sedentary side of things. Laying down, sitting, maybe in a wheelchair, having difficulty getting around anywhere. All of that is common for a lot of people, and common for me too. However, what people don’t realize is that even if we are laying or sitting, that doesn’t mean it feels good. It doesn’t mean we are comfortable.
Daily MS pain and spasms
Yes, I’m saying that even trying to rest isn’t easy at times. Laying on the couch or in bed may look and sound relaxing, but trying doing that with legs that feel like they are on fire. Or try kicking back for a quiet evening, and having the muscles in your arm begin to uncontrollably spasm. Instead of it being restful, it actually becomes quite frustrating, particularly as we are often plagued by fatigue and desperately need the rest.
Inability to truly relax and rest
In fact, this inability to get comfortable, no doubt, has an impact on that fatigue. I’ve discussed “painsomnia” before, but helpful rest doesn’t always have to be at bedtime. There are many other moments where we try to recharge our batteries (or find a few more spoons, if you enjoy that analogy) and simply can’t. This inability to get good rest because of our symptoms helps to perpetuate this vicious cycle to the point where we’re not sure if we can’t rest because our symptoms are so bad or our symptoms are so bad because we can’t get enough rest. It goes on and on, and I’m sure is responsible for some people’s irritability along the way.
Spasms worsens throughout the day
I typically begin to degrade throughout the day, all of my symptoms often become worse as I go about my business, which is why my example in the beginning had to do with me settling in at night. It’s fun to note that at night, my dog will stay on one side of the couch and give me space, but in the morning, he’ll often either be on my lap, or pressed right next to me. Through experience, he knows the difference between my body in the morning and the evening.
Unable to be still with pain and spasms
This inability to get comfortable can happen anywhere though. Knowing some about MS, my friends will often offer me a seat when we are out. However, because I know I will need to stretch my legs or move them some in hopes of lessening the pain (which in no way works), I often prefer to stand (try to anyway), or rather, stand and lean against something, because I know the pain and spasms won’t allow me to stay still (a bad leg spasm while in the seated position is pretty awful). When I am at home on the couch, I am constantly shifting between laying and sitting, and in various directions.
Constant struggle to get comfortable
Bottom line, life with MS for me seems like a constant struggle to get comfortable. It does happen, but it’s rare. This is all sort of the side effect of the pain and spasticity I go through and it’s something that, unless you live with someone with MS, you might not realize. The image of someone with MS sitting peacefully still and constantly resting isn’t always an accurate one. There are a lot of days when I just wish I could get comfortable, I feel like if I could, maybe it’d lessen some of my other symptoms. Anyway, I hope I’ve opened some eyes of those who think that all we do is rest. I hope you can see that even when we are resting, it can be far from restful.
Who can relate? "Just because I could do something last year, last month, last week or yesterday doesn’t mean I can do it today. Also, it doesn’t mean I can’t."