This is my little private corner of the internet. Therefore, I feel free to act as angsty as I want here.
Largely, I feel very good. The MS has been stopped, and it’s a new day, a Brave New World, full of possibilities.
BUT I have arrived at home with significantly more weakness than when I left. I would put my EDSS score at a 7 right now, which is completely wheelchair dependent. I rely on family to help me out, as I’m incapable of standing up on my own.
I had been told that this was a part of coming home, and part of the recovery process. The problem is, I don’t think I had been fully prepared for what it would entail
Now, in the past, we weren’t prepared for the full spectrum of possibilities that MS presented. And we were blindsided by how bad it got, how quickly. This feels kind of like the opposite problem. Even if you are unprepared for a situation, a new plan can be prepared, and executed.
I know, academically, that my job right now is to eat good food, and sleep. To help the machine rebuild itself. But emotionally, I also want to start PT. To get myself stronger, and gain back some independence. It’s an emotional struggle.
I will follow the rules, of course. But as one person put it to me before: “I want it all back right now”
Eyes on the horizon. I certainly don’t think I will have a hard time getting myself to the gym for PT when it is time for that, so that’s a good thing. 😀
Edit: Really what I’m saying is that I know the rewards are coming. I can feel that I’ve been even luckier than most. Its just that patience is hard 😉😂