Well brace yourself, this isn't going to be the most positive of blogs. Its prompted by someone saying something they thought was quite positive and that they were being nice, but really was the final nail in the coffin.
As you may have seen from my bio, I have Multiple Sclerosis. I like to think of myself as an MS survivor rather than a sufferer, victim, patient or any of the other terms often used to describe someone who lives with this and other long term conditions. Although at the moment struggling rather than surviving probably more accurately describes where I am.
I am currently plunging headlong into another relapse, this is one of the hardest things about MS, its unpredictability. The long term ongoing effects you can deal with, learn to live with, plan for and come to terms with. The relapses however come out of the blue, often when you least expect them. They always arrive at the most inconvenient times, and you never know quite what the next one will bring. All you can guarantee is that you will feel absolutely dreadful for a while, and at times lower than a snakes belly. The treatment we have for the relapses doesn't suit me particularly well, and often makes me even more ill than the relapse itself, but it is also the only thing that will put me back into remission in a timely fashion too. So on top of all of the woes the relapse brings I nurse the dread of the treatment too.
So that's where I am at the moment, my relapse has reached a stage where I've had to admit defeat, its beating me. I'm dreading how ill the steroids are going to make me, last time they gave me diabetes. I'm struggling to keep going at work, let alone trying to be remotely human when I get home. The ultimate irony is when I get this bad and need sleep more than anything, it tends to evade me due to pain and muscle stiffness making it impossible to get comfortable and my brain refusing to go into sleep mode.
Today was a struggle, just making it though the day, and I had a late afternoon meeting to go to on top of it all. I was feeling pretty rough I can tell you. The meeting was with people I've had numerous meetings with before, but this time I had my trusty stick in tow. Which prompted the question about what I had done to need the stick. I replied with my usual, "Oh sorry thought you knew I have MS."
To which the reply came, "Well you can't tell you look so well, I have friends with it and you don't look like there is anything wrong." When I explained that I was pretty much at my roughest right now, she reiterated how well I looked. I wasn't sure whether to say thanks, laugh or cry. So I just went with shrugging my shoulders and a brief smile.
Its even more ironic that the comment was made by a nurse. My friends now recognise that when I'm really struggling I get a really flushed face, I guess this could be mistaken for a healthy glow? I know its hard to know what to say when confronted with someone being affected by something that people often don't understand. I also understand that most people want to be able to say something positive. But really, telling someone who has what is largely an invisible illness that they don't look sick just makes us feel worse. We already find it hard enough to help people we are close to understand what we are going though. We constantly feel like we have to justify why we struggle to do things, especially at work, we think that people look at us and think we're being lazy or overdramatic, that its not as bad as we make out.
For me that was the straw that broke the camel's back. Is it any wonder when I feel like this that I just want to shut myself away from the outside world, curl up in a ball and cry. So thats the plan for my evening, try and get it out of my system, get up feeling a bit more positive tomorrow and try and carry on. Paint on my smile and fool everyone around me into thinking I'm OK and coping. Then once I have the dreaded steroids I can collapse into a heap and start the long climb back to normal.
Whatever normal is............
C xx
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