I’m new here and it said to introduce myself, so here we go:
I’m 40, married, no kids, and I was diagnosed June 2018 during my second hospitalization that spring for paralysis, numbness, pain, and other MS-y stuff. I am lucky in that I presented pretty classically for MS, ticked most of the boxes, and the lesions in my brain and the transverse myelitis in my spine were pretty clear. (Although the first attempt at diagnosis was “a stroke, but more likely brain cancer…”) But it did just kind of hit me like a bolt out of the blue. I went from being very active and training up to do a solo portage trip to learning to walk again twice in one year.
Where I’m at now is that I’m off on private insurance disability, which will end in the spring. My current plan involves freelance copywriting, since I can manage my good hours and not waste my productive time commuting. Fatigue and pain are my main challenges right now, along with getting my head straight.
I’ve been on Tecfidera for a year, and my relapses aren’t as bad, but my new neurologist (the old one… is a long story) thinks it’s time for a change. I’m scheduled for an MRI on a newer machine, and he’s trying to get me into a chronic pain clinic. My day to day involves getting foggy and having to sleep in the afternoon, but I still regularly have days where I’m too fatigued to accomplish anything. Going back to my office job just seems unlikely. But it’s also hard to tell from the outside, because no one outside my family really sees me when I’m fatigued, and I don’t really look like anything’s wrong right now.
I’ve been slowly improving my physical conditioning, and I am getting better, but it’s frustrating when an episode wipes out weeks of progress. But what else can I do but start pushing the rock back up the hill? The goal isn’t the top of the hill, the goal is to keep pushing. At least that’s the mindset I’m trying to foster, with meditation and therapy.
I’m hoping to get a bit of community out of this, to chat with people who understand what it’s like to have MS and how disruptive it is, but also how everyone is facing the challenges and finding accommodations and success dealing with all this… stuff.
Thanks for reading this far; I’m funnier when I’m not having a rough pain day.
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