Imagine – you have woken up with instant jet lag. The world is spinning. Your fingers are feeling fuzzy as you fiddle with the buttons on your shirt. Your vision is playing tricks on you. You are moody. Your legs may as well be encased in concrete because you can barely lift them as you walk and you know… you just know… the odd creeping, squeezing sensation that starts in your calves will kick in later and that no painkiller will relieve it. You struggle along but to all intents and purposes look fine on the outside.
Then you start talking to someone you haven’t seen in a while, a former colleague or a relative perhaps and they ask about your health and you respond with some vaguely optimistic small talk. Then as you are leaving they say….
(cue fanfare) “It’s good to see you looking so well, anyway”
This multiple sclerosis is doing wonders for my appearance. No-one ever complemented me on the way I looked before I was diagnosed and now I get complements left, right and centre. It must be doing something good as it eats away at my brain and spinal cord – it seems to have given me a makeover in the process.
My pet peeve is this: I have no problem with people telling me I look good, healthy or whatever. Bring it on! I can live with that. It’s natural for people to want me to feel good and when they say it, it shows their heart is in the right place.
What gets me down is that I would like to say something along the lines of “Actually, I feel like death. I have good days and bad days but today is a BAD day. I live with the knowledge that this is only going to get worse over time and because it is an invisible disease I can’t outwardly display the fact that I am ill, but yes, at least I don’t have a cold which would indeed make me look poorly.” But I can’t. Of course I can’t. People are being kind and they are concerned for my wellbeing. They are being friendly.
The last thing they want is some curmudgeon moaning about how crap they feel all the time, because it would frankly get on my nerves if I knew someone who felt the need to remind me at every turn.
It’s just that sometimes you want to shout it from the rooftops…
…but then you remember rooftops involve some stairs
…and maybe some climbing
…and then you might have a giddy spell on the way up.