I've talked about it before but the mental game is tough. It's hardest at night or when you want to do something and feel like garbage. I feel like I'm constantly putting on a show. Like a select few truly get it. The issues I've been facing have been going on for over 2 months now. I thought they were getting a bit better only to have it regress almost back to the start. Ever watch the movie Men of Honour with Cuba Gooding Jr.? He's in this deep sea diver suit and has to walk in it and every step is an effort. He fumbles to put stuff together underwater wearing the gloves and it's cold and things don't work properly. I know that's a bit extreme but that's sort of what it feels like when it regresses this bad. I have a hard time giving change out of the til, walking around, sitting is very uncomfortable because it's tight around the ribs. Never mind just the fact that it's extremely annoying to have sensory issues. When it's like this everything is work. Everything feels like a workout. I thought I was on the mend for about two weeks. Thought it was just sensory issues to heal in the upper half but now it's all back.
I started my new medication Gilenya yesterday. Stayed at the hospital all day while they monitor your heart. Everything went very well. At the end I spoke with my doctor as at my last follow up a couple weeks ago I was told that the upper half numbness may or may not go away, but that's all it was. Only slight tightness and no heaviness. I was walking much better. I could function. Anyways he was aware last week that it was regressing and when I spoke to him again as it's almost back to the start at this point, he told me I needed another MRI. This is the only way to tell if I have active lesions. If I do he will "hammer me with steroids" because the longer this goes on the more damage it does. The problem...wait time. He will see if he can get me in in the next 2-4 weeks. Average wait time 13.5 weeks so that is expedited. But then another week for results and another to actually get started and finished the meds....total 4-6 weeks. And then at least 2 weeks to START working. The whole thought is tiring.
Maybe it will improve on its own by then but they say that relapses last 6-8 weeks and this is defiantly past that. I wish I could write nice optimistic blogs right now. Be an inspiration and one of those people who never complained ( do those people even exist?) I guess they do on the outside, but that's the face I put on for most. When people ask I will tell some what's going on because I think people need to know to understand. I'm not helping advocate for this disease by covering it up. However I don't let all my frustrations out, I probably overdo it cause I want to be a part of everything still and that helps my mental health. But many days, especially through rough spots it's a face I put on. It's all just make believe.