Being diagnosed with MS is not the end of the story, rather the beginning of a miserable soap opera where every episode ends on a cliff hanger and you don’t know what to expect next. Some people with MS talk about the relief of diagnosis, not me. Don’t get me wrong, it is nice to have a name and something to blame for the bizarre symptoms I had been experiencing, but with MS you don’t get a simple diagnosis and learn to live with it.
It is more like getting a new diagnosis everytime you relapse and realise some changes are not going to disappear. My experience with MS is one of gradually increasing disability that requires continuous adaptation, both physically and emotionally. First I accepted my stick, then the rollator and now the wheelchair is looming. It’s a never ending cycle of rolling with the punches (not literally obviously - I’d never get back up!). I really never know where this disease will take me or what it will take from me. It is an emotional rollercoaster trying to maintain sanity and some level of positivity in the face of constant upheaval. Quite frankly I’m nauseous and want to get off this ride or maybe that’s the meds - who knows!?
You look so well / don’t look sick
MS is often described as an invisible illness as many symptoms can’t be seen and you never really know what a person with MS is having to deal with. Sadly it has been a long time since remarks like this were an issue for me. My “invisible illness” has long been glaringly obvious. At best I walk like an unsteady toddler running down a hill. My days of walking unaided are well gone so I always have at least a stick but more commonly a rollator so I quite visibly struggle to get around. I miss the days of “you look so well” - maybe a makeover or sparkles on my rollator would help.
Damned if you do, damned if you don’t
I find life with MS mostly involves doing things that you “should” do, like exercising, getting out of bed and taking medications. None of these things make me feel good but “should” be done regardless.
A good example here is I joined the local gym. I talked to the trainer and explained about MS and how exercising might help maintain or improve my current mobility but that not exercising definitely would not help. These are the kinds of daily decisions I am faced with. There is no pleasant, preferred option - exercising a leg you can’t actually move or feel is not something I enjoy or get a sense of achievement from. I also have to take into account that if I do too much one day I may be exhausted and have to rest for the next few days - is it worth it - who knows?
MS can make it really hard to motivate yourself. In my case I don’t have a job or children so I don’t have the usual societal demands on my time. So it is up to me to create meaning and keep myself going, exhausting!
I was diagnosed in 2006, aged 28. I was living in the UK with my then boyfriend and trying to establish a life for myself there. I had graduated with a masters degree and was making my first tentative steps into building a career. Enter MS. The timing was dreadful. MS often shows itself at a time when you are trying to establish yourself and can completely derail your plans. I feel a bit robbed of my potential. Had MS waited a few years I could have been more established in my life and career.
There is a lot more I could say here but I don’t want to depress you or myself by going any deeper. I’m also not as miserable as this blog may indicate, this is just not a line of contemplation I indulge in often so thank you for joining me.
Just remember that these are my experiences with MS, not everyone’s journey is the same.