I was wondering what to write about this week when a friend asked me a question that I thought would have an interesting answer…
‘Do you feel left behind with our friends since you’ve been diagnosed because you can’t always go out or just don’t feel up to it?’
Well the short answer is yes. I would say that this is probably one of the hardest things to come to term with after diagnosis. Before I was diagnosed I was out a couple of times a week dancing all night with my friends, running up and down the stairs of clubs the listen to different music and still be fine the next day to get to work for 8am! The past three years have really changed the way I have to socialise because of the physical hurdles but also because of the amount of planning I have to do before I can even leave the house. (see previous blog)
It’s really difficult to have to say no when you’re invited out, even when you feel fine, because you have something to do the next day. For example, I was recently at a friends party but couldn’t go out to a club afterwards because I knew if I did I wouldn’t be able to go food shopping the next day. The main problems MS has left me with are balance and the strength of my legs, so if I’ve been on my feet the night before even for only a few hours, the next 2-4 days it feels like I’ve run a marathon! The best way to describe the feeling of Muscle Fatigue is that it feels like the worst flu you can imagine, where all your limbs feel like they weigh 10x their normal weight and it takes real effort to do the simplest things like sitting up straight, getting in and out of chairs/bed or even lifting a glass.
Because of all these symptoms that get worse after a night out I often have to stay in when my friends go out because even though I’m sure they wouldn’t mind, I don’t want them to feel like the night has to revolve around what I can and can’t do. I do feel like I’m missing out especially when you see comments or pictures on Facebook and it can make me feel angry at myself for not being able to ‘not care’ about the next few days after the night out but if I want to leave the house the for the rest of the weekend I have to. I’ve spoken to other young people in the same situation as me this anger and sadness seems to be a very common feeling.
I’m lucky that I have a great group of friends who all try their best to make me feel better by sitting out a few dances or organise nights in every now and then, but there's still the feeling that this shouldn’t be the way it is at 24.
As usuall, Let me know if you want to hear more or if you have any questions you want answered ;)
Claire
