In honor of World MS Day I’ve decided to send this report to a broader audience. I realize it’s been a while since I wrote one of these, and I’m sorry. There have been tiny victories and defeats over the last few years, but for the most part my health remains low grade shitty, hardly worthy of an email. Or blog.
My weeks before being stuck at home had a different rhythm, and self care was easier. On good mornings now, I stretch, get out of bed, and then head to the living room for 15 – 20 minutes of Pilates on my own before a sensible breakfast. It is equally (read: MORE) likely that I will spend 30 minutes scrolling on my phone before rolling out of bed, ignoring the yoga mat, plopping my tight glutes on a barstool, and ploughing through two blueberry scones. It takes such effort to be good, to take care of myself. And, no matter how much I remind myself of the wonders a small bout of morning exercise does for my body and psyche, it is hard as hell to make it happen. My wonderful Pilates instructor Jeneva spends a half hour Facetiming with me on the weekend, so, if nothing else, I have that.
I feel like I’m falling more these days. Maybe due to reduced core strength. Maybe because I’m not paying enough attention. My elbows are covered in little pink circles where I’ve caught myself on a wall. The lightest of skinnings. Post-fall my first thought used to be a quick calculation of when my next massage would be. Under current circumstances those calculations are pointless. I try to be happy for those who can finally get their hair cut and colored again*, but I won’t be celebrating until massage studios are open. Massage never fixes things completely; it sure makes them feel better sooner, though.
I should also acknowledge that increased falls with Neal home are a mixed bag. On one hand, he’s always here to help me up. On the other hand, HE’S ALWAYS HERE. Sometimes a girl just wants to flop around awkwardly in private.
I was due for bladder Botox in April, but rules regarding what procedures are essential make it so that all my urologist can provide is an email saying “I am not quite sure when we are opening up to do Botox, but I have a list of people to call and will add you so we can get you scheduled ASAP.” So I try to curb my liquid intake and celebrate each trip to the bathroom as a chance to get in more steps.
Oh speaking of steps–thanks again for your Walk MS donations! I haven’t managed a full mile since then, but I try to do a half mile most days. It was pretty damn inspiring to realize I could do it. So hurrah for that.
What else? Oh, I had a telehealth visit with my neurologist, Dr. A, whose phone manner is much better than her bedside one. (I still haven’t sorted out the paperwork with Johns Hopkins, which is annoying but not worth my energy presently.) The chronic back pain that she shrugged off last fall is now worthy of her concern, so I take 100mg of Gabapentin 3 times a day. And it helps some! Fish oil and Biotin are back in the supplement pool at higher doses than before. (Sure, why not?) She also sent me for a brain and cervical spine MRI. No results yet, but I’ll keep you posted. My biannual bloodwork (required to keep me on Tysabri) will be completed next week when I go to Georgetown for neck Botox. Yes, neck Botox is fine but bladder isn’t. Ours not to reason why.
At work we have a Slack channel (Slack is like Facebook for work) called #covidsilverlinings, and here are mine:
- No massages means no paying for massages, nor paying to be transported to and fro. And while I will strip down and get on that table THE MOMENT it’s possible, it’s good to know that my body does not shut down without that care.
- Pilates at home is effective! And, again, doesn’t require transport. I prefer the apparatuses (apparati?), but perhaps I can do a combo of home and studio work moving forward.
- Being home all the time has taught me that I’m a decent walker when I take smaller steps and use my rollator. Bonus: the rollator is handy for transporting snacks from room to room.
That’s all the news from DC. All my news, at least. Thanks for your support. I am so lucky to have you all!
P.S. Mail has been inconsistent of late, so I assume my MS Day presents are stuck at a post office somewhere on the east coast. Looking forward to their arrival!