These last months have been unreal, amazing, and as always, challenging. I could write a full blog about the challenging parts, brutal days, symptoms overload, mental aspects and emotional impacts of all that, so I’ll just leave it at that for now and move on….
For those people who aren’t close enough to me to understand my struggles, I made a video below called Reality Check. I did it to try explain what life is like between the smiley videos I make of my brilliant moments of new functionality. Please understand that my videos are tiny clips of awesomeness that happen once in a two or four week period.
Yes I have developed the ability to walk 50 solid steps without a walker, but that doesn’t mean I can walk again that day, or the next, and definitely not all day, even with a walker or with rests.
I have a FINITE NUMBER OF STEPS per day (or output) that I can do. It’s hard even for pwMS to understand what my disabilities are, as they are very unusual.
My mobility disabilities are ENDURANCE in origin. My daily steps can be depleted even further if I use my brain or other parts of my body for something else. I can’t just take a nap and be back to baseline. Even I don’t know what my maximum is on any given day. On to the good parts…
I am SO much happier here in Oregon. I feel like I have been LIVING for the first time in 9 years. I also don’t feel like the Poltergeist is trying to kill me, which is a huge relief, but an odd sensation at the same time. It’s like a toxic best friend that moved countries? I know it’s still in me, lurking silently, but giving me peace for now.
As I’ve previously written, the longest I’ve walked (in years) all in one stint was 150m in April. That was for my MS Neurologist, Dr. Traboulsee. Until yesterday I had not attempted to walk that far. Mostly because I didn’t think I could, but I was also scared that I would push too hard and it would set me back weeks.
Yesterday I just had the feeling that it was the day to try to go farther. With multiple calculations on step size, count, distance, etc., I did a walk outside nonstop, with no walker for 475 steps which equated to 300m!
That is the single longest walk I have ever done in so long I don’t even remember. I balled my eyes out right there on the street. Yup, it was a full on drama scene. I made a short video of it to capture the emotion of the moment, but I look almost more devastated than happy, so I am not sure I will share it.
With this new distance, it potentially drops my EDSS to 5.0, from 5.5. Click here for more info on EDSS and MS. Of course nothing is official unless you do it in front of your doctor. I can’t believe it. Don’t ask me to try it again. OK, maybe in 4 months or so….;-)
I’ve already mentioned that I’ve been driving regularly now, which is outstanding. The bigger deal was that one day my scooter battery was dead, and I needed ginger ale badly as I was ill. I had no other option except to walk in to a Quickie Mart to get the ginger ale. It was really tough: I staggered and I was scared out of my mind I’d fall, etc., but I did it. I got that ginger ale! I realized it was the first time in maybe 7-8 years that I bought something for myself, on my own two feet. On my own two feet. I just had to say that again 😉
For an able bodied person, this is taken for granted, and it should be for everyone frankly. For me, I went into a shock like state realizing the depth of what I’d been missing all these years. I couldn’t cry, I couldn’t laugh and I had no one to share this moment with so I kept it to myself, till now. Like WOW! Who would ever think that buying ginger ale would be a monumental triumph.
Lastly, a little teaser for my next blog which will be coming shortly. I’ve been accepted into an extremely promising phase 2 clinical trial (overseen by FDA), which is out of Houston. I leave August 22nd to start the process! More to come….