This past week has been really tough for me. Most of it stemmed from the impassable walls I slam up against as a disabled person trying to do something to help myself, or for myself. We’ve all seen those videos where cars are being tested, sent at full speed crashing into concrete walls to show how weak the front end of the vehicles are……and the vehicle is obliterated? That’s how I feel.
The most positive news is that my walking quality is really improving, albeit slowly, but surely. I made a short YouTube of it below. I am really excited about it, and wish wish wish it keeps going. My average maximum step count per day rarely exceeds 100 total, sometimes 200. Ten days ago, I walked 160 steps x 2 in one day (320). This is the single longest amount of steps in one day I have been able to do in years. It’s really mind blowing!
My MRI report was mixed. Good in the sense I didn’t have any new lesions in the spinal cord. Although the radiologist ended the spinal report off with ‘no substantial change [from last year] in lesions’. So how much growth has there been?! I hate ambiguity in these things.
The brain MRI was as expected: no new lesions, nor no brain loss compared to last June. However, I really hoped for a decrease in lesions like some people have. Oh well 😀
The biggest shock was that I have over 30 lesions, although exactly how many, who knows. Like 35? Or 42? Or……? Did I have this many at diagnosis, or how many have been missed over the years? So many questions. While this took me aback, I also am MS savvy enough to know it doesn’t matter how many I have, it’s the symptoms that tell the real story.
In my video below I explain a bit more about the rest of the MRI, the other glaring issues I need to deal with in my neck, and my day (yes Wendy I know I infringed your copyright on the use of ‘with your bare face hanging out…’ so I guess I owe you some royalties, haha!).
The recovery I’m going through is such a mental concoction of emotions it’s hard to stay grounded. It’s like I’m running to catch up with them, process them, before something new happens.
The horrible sensations in my body are still omnipresent and escalate the more movement or brain usage I deploy. It’s unbearable, as I’ve mentioned many times before. I won’t go on about it.
I’m trying so hard to make a better life for myself. Make myself more independent so I can relieve the pressure off all those around me.
To drive again, for a little, I almost feel like an adult again. The feeling is this mixture of elation (like, woweee yesssssss!) and grief (like, wholly fork I’ve missed out on so much life 💔).
I am the person that ends up looking at the glass mostly full, and I will get there, once I puke out the grief.