In an idle moment at work today, I found myself browsing the website of the MSRC. There's absolutely tons of stuff on the internet about MS, but the MS Resource Centre is definitely one of the best to get the most up-to-date information on new treatment options and what not. I don't make a habit of popping by all that often, but I do follow them on Twitter and occasionally click through on the links they post.
Anyway. I was browsing the site today and found myself reading again the bits about MS symptoms. The content there is pretty good and because everything is explained without too much medical jargon it is a good place to start for anyone wanting to learn the basics about how MS can affect people (the wikipedia page is outstanding too).
I'm lucky enough that my symptoms have been pretty stable for a while now, so obviously I know them pretty well, but I still found it fascinating to read through stuff that I must have read over and over again in the run-up to my diagnosis (after all, four years gives you a pretty reasonable amount of time to do some research).
It was only after a few minutes that I realised why I'd been drawn into reading this stuff today: I injected yesterday night and woke up this morning feeling like I'd been hit by a truck - even more so than usual. I have spent much of the day feeling fatigued, numb, tingly, weak across the arms and shoulders... pretty much the full range of my symptoms. Now, I know that this is likely a delayed result of my long weekend in Den Haag: I used up a lot of spoons sitting around doing nothing much, and my body now wants paying back in full. I'm usually pretty good at ignoring what my body is trying to tell me, but found it quite interesting that today my subconscious mind was drawn towards reading stuff about MS symptoms when I was feeling those same symptoms more heavily than usual.
I tidied up my fingernails last night. As always when I carry out this fairly mundane task, I'm forced to reflect upon the day-to-day impact that MS has had on my life: when I use a nail file, I can no longer tell the difference between the textures of the coarser and the smoother sides. Not a big deal, right? I'm the first to admit that this is hardly a life-changing experience, and I know full well that I've been very lucky to have been so relatively lightly affected by MS so far... but all the same, it's something that I used to be able to take entirely for granted. The numbness and tingling in my hands has now robbed me of the finer touch sensitivity and control that I used to have. I'm not very good with small buttons or knots in shoelaces either. Pretty far from insurmountable issues, I'm sure you'll agree, but they still represent something that I've lost and will likely never get back.
There's an interesting section on the MSRC on the Psychosocial Impacts of MS, discussing how people come to terms with their diagnosis and any disability as well as the possible cognitive impacts of the disease itself. Here's a bit on "adjustment":
"Once the diagnosis of MS is made, the process of adjustment can begin. The patient will need to mourn lost health and get used to a new identity. At first there may be feelings of shock and disbelief, of anger or denial. At a later stage, depending on how the situation is managed, the initial need to deny is replaced by sadness and a gradual acceptance of a new reality. It is important to recognise that this bereavement process is natural and cannot be rushed. People need the security of denial until they are able to replace a set of old beliefs with new ones."
I'm not sure if I've been through this. Alright, so maybe come and ask me again if things get significantly worse for me, but as things stand, I'm not sure I've ever really been in a state of shock or disbelief about my diagnosis. I don't think I've ever been really that sad about it either. Perhaps that means I'm just in denial?
Easy for me to say with the symptoms I have, I know, but it's always struck me as pretty pointless to harp on about something that I can't change. I have a progressive neurological disease that has no known cure. That's just the way it is. No amount of moping or moaning is going to change that one simple fact.
What's the phrase? Get busy living or get busy dying.
I've made my choice.... if I have to put up with less than perfect fingernails from now on, then so be it.
the boy in the bubble
20 hours ago