Is this just me?
After a long time (5 years) and everything from dysarthia, to dystonia to paraplegia I have finally been diagnosed with MS. I have 2 spinal lesions, and as of current nothing on the brain. I've recently started plegridy, and it all seems to be going - thankfully- fine.
I'm aware that even though I'm 26 years old and a wheelchair user with chronic pain, fatigue, quadraparesis, etc my MS isn't that active- but even if it was I'm pretty sure I'd have the same response to the cultural narrative surrounding MS that I have now.
Whenever I tell anyone 'Yeah, I have MS' I get some variant of someone telling me something horrific about their uncles aunt's friend who woke up and couldn't move at all (happened to me in 2015 FYI) or some story about someone dying 'from MS' - these people are always about 89 when I inquire further.
I'm not uneducated in the condition itself either, I am about to graduate with a masters in history of medicine and read up on MS and the disease course and diagnostics and such as we all did. I know the only certainity is uncertainity, and it'll progress and all that fun stuff that's associated with this weird disease.
BUT, to my perception MS is just a thing that's happened. I couldn't have prevented it, and reacting persistently negatively (I didn't react negatively to diagnosis, but some might and that makes sense, but the persistence not so much) is like shouting at the sky because its raining. It seems that almost everyone has a very negative narrative surrounding MS, both within and outwidth (more so outside admittedly) the MS community.
I wonder if my getting used to the idea of being disabled (due to spinal lesion knocking my mobility as 1st port of call) and visibly so due to dystonia/dysarthia causal to chronic brain inflammation allowed me some secret fast pass to accepting this. Surely though, I can't be the only person who got diagnosed with MS and sort of shrugged and carried on?
Well said..... Couldn't agree with you more. Learn all that is learnable and get on with life as best you can...... after having a long rest and frequently long kip's. Development of a sense of humour is crucial, if you can't laugh at yourself, your destination is miserable central with no remission. I used to be indecisive but now I'm not so sure.
Hey, It's very strange accepting and living with MS. I find it comes in waves - sometimes I am fine and when I found myself using a wheelchair for the first time after a bad relapse this year, I surprised myself with the calmness that followed. However, I was in rehab for a while and I had access to a psychologist, among other professionals helping me rebuild my life. Sometimes I can be emotional, but I do try not to. My MS is atypical and my first relapse was in 2009, although it was CIS at the time and undiagnosed. It didn't become "active" again until 2017 - even then, it has not been straight forward. From personal experience, I kept hoping someone might have made a mistake or my body was just funny, however, now I am being treated with Tecfidera (and soon changing to Ocrevus), I can no longer escape and I have to accept I have MS. My take is that it is bad luck and nothing I could have done could have prevented me from getting MS. I just have to try and get along with it and manage it as best as I can. This is sometimes easier said than done (especially in the midst of "good advice" or people telling you that they are "tired" too - I've learnt to ignore it and rant to my beloved husband later!) I guess what I am trying to say, is that we all deal with it differently and those feelings can change over time. I hope you have a lot of support and I feel, the online communities are amazing when things get tough and you need empathy, rather than sympathy. All the best, Shaman