It’s been a while since I wrote something MS related. The past couple of days something has been occupying my thoughts though. How others view you when what you have is an invisible disease. Invisible to all but you that is.
The symptoms of MS are plenty, and a lot of them are not exclusive to MS. Like difficulty to concentrate, or extreme fatigue. And they differ from one patient to the next. If you are really lucky they do not really affect your life. If you are lucky they don’t affect you much. Most of the time that is. Because just like with everything else in life, there are ups and downs, and with a lot of effort you could “hide” the down days. Not to please anyone, but simply so you can feel you can still function independently and completely.
Which means people do not realise how hard a time you are having on those days. For all intensive purposes, you look and act normal. You and only you know how much more difficult everything is to accomplish, how much pain you may be in but are still smiling, how tired you may be but still try to keep up with everyone else (and this is not the kind of tired that goes away with sleep), how hard it may be to concentrate so you keep trying as hard as you can to focus.
I just had one of those days. When I felt weak and uncoordinated. When I would stare at the compute screen but could only focus for less than a minute each time. Let’s not get into how or why this flare-up came about – it could be what I’ve been eating for the past couple of days, it could be stress, it could be the sudden temperature fluctuations. Or how emotionally you feel weak because of what you have been able to do before the onset of the disease and the expectation that you could have been able to do.
What’s really hard during these times is trying to explain to people just how you are feeling. Today I used the example of “having had 15 cups of strong coffee all at once,” feeling tense and unfocused.
And then I started thinking again (yes, I do tend to over think, another effect of MS), and retracing an earlier conversation I had with many people actually. About how I am entitled to a handicapped parking sticker, but people think I should not apply for it because I don’t need it. Well, I do need it – sometimes at least, when having some trouble walking even 100 meters, or when even pushing the shopping cart to the car is hard to do.
I really hope I will never have to use that sticker. And I’ve said it before and really meant it, I don’t want special treatment from people because of my MS. But I may have to use it, and I may need special accommodations – not special treatment or favours – and a whole lot of understanding. So I will apply for it, as well as for any other accommodation or benefit I may be entitled to. Without feeling any shame, or having any reservation. Because, even if you cannot see it most of the time, it is a handicap that I am working with.
My featured image today is a penguin. Because, let’s face it, they are awesome.