When I was first diagnosed, resilience was doing things that people with MS generally don’t do - run marathons. Later, I realise that resilience is acknowledging what has changed without allowing those changes to erase that value of what is still possible. I can’t change the past and I can’t do the things I used to do, but I can try to control how I feel about it and how I try to take the next step forwards.
XFEDI
ActivityPub#MS
Public posts with this hashtag.
Important news:
I am not an #MSWarrior. #MS isn’t a disease that responds to my determination, no matter how determined or stubborn I am about it.
Determination affects how I approach my condition, but it cannot determine how my MS progresses. Disease acceptance has been a journey for me, but an important part of being able to manage my symptoms and to keep pushing forwards.
“the mature voice seems substantially less interested in demonstrating that it has the answer”.
“Early Swisslet writes because there’s something to say. Later Swisslet increasingly writes because there’s something he wants to understand. The wit, scepticism, cultural references, digressions and occasional profanity are recognisably the same voice. What’s changed is what that voice is being used for”. I might adopt this as my tagline.
The wisdom of ageing in a nutshell.
“Later Swisslet”? My days.
I just asked copilot what it knew about me, and the answer was surprisingly detailed and included work, a blog I wrote for 20-odd years and my presence here (linked through usernames and the tagline on my profile). As I don’t really pretend that I’m something I’m not, none of this really bothers me. What stopped me dead was the summary (of the blog) that said “the blog is unusual as it is a public longitudinal record in which the older you repeatedly revisits and reinterprets the younger you”.
I haven’t written on the blog regularly for a few years now, but yeah…. That’s pretty much it. Thinking about it now, a lot of it is about processing how my perspective has changed as I’ve got older and as my #MS has progressed.
I should write a book.
I’m curious how many people diagnosed with #MS and other autoimmune neurological conditions were actually poisoned with fluoroquinolones, powerful antibiotics with black box warnings. The medical information about these drugs does not mention that the damage, which include damage to nerves, muscles, tendons, the heart and central nervous system, can take years to show up, long after anyone remembers they took the drugs and long after it’s easy to say the drugs were the cause. The symptoms not only take years to show up but progress slowly so they are easily dismissed and when they can’t be dismissed are misdiagnosed. The medical literature does not mention any of this because there is a mentally that the effect of the drugs would show up right away, not years later so they never research the long term and just wait for reports of adverse effects which never come because the connection is never made since no one expects it or looks for it.