Recently I bumped into some people who I hadn’t seen for years. As we exchanged social pleasantries, one said ‘How are you doing? You’re obviously doing well’ and the other said ‘You’re looking well’. Now, I’m sure both of these comments were meant as compliments, and I tried to take them as such, but…
The “looking well” comment is a common one and I don’t want to seem ungrateful (in fact these days if someone thinks I look ok enough to mention it then I really am grateful!) However, thanks in part to this government and certain sections of the media who have cast doubts on the validity of those of us with a chronic illness or disability, when someone says “You’re looking well” what I sometimes hear is “You’re faking it” or “You’re not that ill”. Paranoia? Probably. As I get older, I like to think that other people’s opinion of me don’t matter, but it turns out I’m not as tough as I thought and they do! As I’ve written before, much of MS is hidden. You can’t see many of the symptoms, because pain, burning, vertigo, nausea, numbness, vision problems, muscle weakness and fatigue, to name but a few, are invisible. However, this doesn’t make them any less debilitating (think your worst hangover with transatlantic jet lag after a 10K run with bad sunburn and you get the idea!)
The make up bag is a wonderful thing. As are GHD’s. I can make myself look fairly presentable in 10 minutes with a bit of slap and straightened hair. However, for me to go out, even to the local shops, takes a huge amount of effort and planning. If I have something to do in the morning I will try to make sure the rest of the day is clear, if I have something to do in the evening I will try to make sure that I have nothing else to do the days before and after. This obviously isn’t always possible, but that’s the plan! The pacing of my week is a carefully choreographed piece, but sometimes I just don’t go out. The combination of symptoms that day are just too much and I have to stay at home.
As for “doing well”. Yes, in many respects, I am and I’m hugely thankful for that, but every day is a struggle. Sometimes every moment of a day is a struggle. I am never symptom free. They change, they morph, they come, they go, but never leave entirely. Sometimes they are a nuisance in the background, other times they are all consuming. I never know how I’m going to be on any given day and I have to try not to let that bother me. I have to plan things regardless and keep my fingers crossed that I will be well enough to do it. Most of this revolves around the boy and taking him to his various activities and just running the house. I now have the added commitment of the charity I’ve set up, but I’m able to work most of that around how I’m feeling and it is hugely rewarding and completely worth it.
Occasionally I plan something fun! A trip to the theatre, a gig maybe or even a night out with the girls, but I turn down way more invitations than I accept. I don’t do a lot of the stuff I would love to do, but occasionally I do. A coffee with friends or a concert, but often I decide to wait for the DVD rather than go to the pictures. I make that choice.
So yes I’m doing well. Considering I’ve had this blasted disease for nearly 20 years I’m doing ok. I can choose to give up and do nothing, or I can try to make the best of things. It might be a scaled back version and it won’t have the nights out, the trips to the coast or the dance classes I yearn for. However, it will have the bits I can do. The occasional music gig, the catch up with a friend and the odd football match. I will continue to put the lipstick on and smile. I am grateful. I don’t want pity or sympathy, but an understanding that if I’m out and about it won’t have been easy and if I turn down an invitation or cancel last minute it’s nothing personal!