You may be aware of MS, or multiple sclerosis, because of a few celebrities who have shared their diagnoses, or you may know someone with MS, or you might be a brand new member of this selective “club,” but only because nobody gave you a choice.
I’ve been a card-carrying member of the club no one wants to join for decades at this point. As MS tends to do, it came on quickly, though in retrospect, it really had been sneaking up on me. I suspect I had it for at least 10 years before I was diagnosed. I’m glad I didn’t find out sooner, because until two years after my diagnosis, there was no treatment whatsoever. Zero. Nada. Zip.
I want to educate people who are unfamiliar with MS, as well as the family members who have someone in their lives with MS, but don’t really believe there’s anything wrong with that person (*surprise!* They do exist!). Even if you are somewhat familiar with MS, it’s unlikely that you understand what it’s like for those of us who are living with it. I’m planning to post once a week at least. Also, please feel free to ask questions-other club members, anyone really.
My headline is *surprise.* When you’ve lived with an incurable illness, you begin to think you’ve seen it all. Exacerbations, i.e., attacks that send your central nervous system into chaos. My worst one left me with impaired vision, very limited ability to walk, an inability to carry things, and worst of all, no idea whether it would eventually go into remission. I had a neighbor who lived across the street from us, and she kindly agreed to take my kids to and from school, where she worked. My girls were young, 7 and 9 and had started at this new school a few months earlier. I think they were scared and confused and I worried a lot about them. The whole thing lasted just over three weeks, piece of cake, right? Not so much! No one can predict what your outcome will be, and things can always get worse. Did I mention that my husband had been in a new job for less than two years? *Surprise*! We were dealing with stress at the level of maximum warp overdrive!
I did eventually recover, with no residual permanent symptoms. Summer soon followed and I was back home with my girls, not keen on continuing to work for the peanuts offered me.
The most recent *surprise* is that I have recently experienced symptoms I’ve never had before. I’ve had relatively mild spasticity off and on since my diagnosis. But as much as I was self conscious about it, I realize that probably nobody noticed it but me. Now, though, *surprise!” I have some serious spasticity. It began while I was lying in bed when my left leg began to rise up, all on its own, like magic. I mean, what the hell? That same tightness graduated to intense tightness in my right thigh. I’m talking so tight that I couldn’t really walk unless I stretched it very thoroughly, also not easily done by planting my left foot in front of my right one, and bending over far enough to get a deep stretch. I’m near a couch and a sturdy coffee table to prevent a Humpty Dumpty scenario, but *surprise!* it’s fairly precarious. And I’ve yet to take a single step.
I’m still working with my neurologist, hoping for a miracle. I’ll be thrilled if I’m able to get back to stumbling along with my walker (aka a rollator). Major setbacks like this are crushing. I’ve been getting by since November of 2013 with walkers, rollators and the occasional scooter I kind of live in my own little rabbit hole but it’s been working for me. Is this a new setup that will require creating a whole new system i.e., more disability and less freedom? TBD…
Thank you, ma'am!!