I wrote this on a day when I could not do much. A day of nothing. The kind of days that are part of conditions such as MS but seldom get mentioned much because they are not inspirational. Or interesting for that matter. Actually, that particular day was not quite as bad as they have been. The limbs were tired but my mind felt very clear so I could write a little around how I felt that day, the fears, the frustration, sometimes even the acceptance. Some days that is too tiring but other days it helps just to do a little something.
Every so often, everything just says no. It is tiring to get dressed, tiring to eat, tiring to vegetate in front of the television. I used to flippantly call these my ‘Brickwall Days’ as it felt like I had hit a brick wall and come to a complete halt. They can feel like days of nothing, isolated, although of course there are things that can be done with little effort. A short reflection on the days when the sofa is my best friend.
The Cause
The first thing in my mind, upon feeling the limbs are heavy and cogs of the mind perhaps need to be greased a little, is always the same. What has caused this?
Of course, Multiple Sclerosis is the key cause. Usually these days result from MS being allied with something else, I think. Today, for example, it is a heavy cold. It is better than it was which means I can type. Nice to be mentally active and the cold is only exacerbating the physical weaknesses that are already there. Such days can also result from overexertion, insufficient rest or stress. Noteworthy is that, since starting a three day week, these days occur less. A nice overview, at least of MS related fatigue, can be found here. It can also be a side-effect of Ocrevus infusions or other treatments.
What I Try to Do
Normally, the main impact is on my physical capabilities. My cognitive skills are seldom perfect but the impact is simply less. Watching TV or reading a book are fine but riding a bike or going for a walk are not. Today typing and writing are ok and I am pretty sure I will be fully back to normal tomorrow. Whatever, it is important to keep the mind moving a bit. Even something daft like messing around with musical playlists. Nice to read in the garden. Watch the birds flitting around the bushes. Doing nothing can be joyous with surroundings like that.
Fear of Isolation
The problem with me is that I am doing all of this alone. That is a problem for a lot of people with progressive illness. For me it is not that bad. It is only days like this. Next week I will be able to see friends, do things. Walking aids on and off I go.
But right now? I will read a book or watch a film or hear a song and I must tell someone about it! Must! Shall I app them? I can type on the keypad of my iPhone quite easily, quite good with my thumbs if I am honest. I won’t feel as isolated, right? But, my friends all work. They are busy. How can I interrupt that? They may have their own issues as well… isn’t it selfish to intrude?
Of course those friends will tell me next week that I was wrong. Why not text? They will be right, but there is that feeling that I am just being an inconvenience to anyone and everyone. In the way. It is only my feeling and it is not loneliness or anything like that. It is just that, on these days, perhaps my thoughts are a little more impacted than I thought they were. Luckily I wrote down everything I wanted to talk about on an iPhone notepad because I am getting forgetful.
Looking Forward… Cautiously
What goes down usually comes back up and I turn my mind to those days. I will ride my bike. I will go for a walk. Meeting up with friends will come back on the agenda. Schemes start to form about the amazing things I will cook when I can get on my feet and get to the market. Roll out the barbecue or get the smoker working that my wife got me for my birthday. This is all so exciting. The world is a little smaller but it is still my oyster. Perhaps write about one of these new hobbies I am trying. Looking at photos on my iPhone that may be useful for this… oh, it’s fun to be mysterious!
Then my hand starts to spasm and I am using one finger to type. Fear cuts in. What if this day of nothing just carries on? I can already do less than four years ago. Should I be looking forward? Or is this more about making the best of a life on the sofa?
Rising from Nothing
Rest, though, normally sees me through and I come out on the other side. This time it is easier. There is a clear cause in the form of a common cold. A conversation with my physio reassures me of this. Colds do screw up people with MS more than they should, that’s all there is to it. Accept it! Sitting in the garden has been nice. I gradually increase what I am doing, making sure I listen to my body, something that I am not always good at. That stubbornness again.
The Sun is shining, though, and I am starting to relax into activity. For a day of nothing, there is a surprising amount to do. The feelings of isolation and fear have been here, but they will move on. I acknowledge them and move quietly forward. Rest my hand and look forward to riding a bike in the sun or seeing friends. Just give it a couple of days.
