Hello to all. How are you feeling? Don’t we always hate that question? Multiple Sclerosis is a shitty disease. Have I said that recently? I remember I used to ask my neurologist every time I had an appointment, are you sure I have MS?” He always replied, “it wouldn’t be an appointment with you without you asking that question.” Unfortunately, the answer was always the same. Eventually I did stop asking him that question. I don’t know if it was when I hit my 10 year mark. It might have been when I started my third or fourth disease modifying therapy. I knew it was before the 2014 relapse that started my slope of true disability. I didn’t need my neurologist to point out the obvious. Multiple sclerosis did a fine job of making its presence known.
I had some moments of not handling my disease progression too well lately. I think you can read some of my latest blogs and realize that easily. I spend 95% of my time in my bed. I’m not sleeping, it is just the easiest place for me to be. Don’t get me wrong, I love my bed. It is an adjustable tempur pedic mattress, super comfortable. I love my bed room. I love having my own space separate from my aides. I feel that it works better for them and myself. We still talk all through the day even in separate rooms. I just get to watch what I want to watch on Tv or talk on the phone without someone hearing my whole conversation. I don’t feel like I’m watched 24/7 that my aides are here. I lost my independence. I need help doing everything now. I can’t even get out of my bed without the help of my aides let alone any other daily tasks. The only independence I have is being alone in my room to do what I want. Even for my exercise, my aides have to help me get the Bionic Gym on or set me up for doing my weights. However, I have the separation of being in my own room to do my exercises without them watching me because they have nothing else to do. They have the ability to be in a completely different area of my condo which really isn’t that big, but serves our needs perfectly.
I am not unhappy. I just think sometimes I’m in disbelief how much my disability has changed over the last year. I used to think my life was slightly pathetic before having MS yet still having the ability to hobble around somewhat. I never realized how pathetic it would be from my bed. I didn’t have the exhaustion of fatigue when I could barely hold myself up in my wheelchair. I never needed assistance to transfer to my wheelchair. Now I almost always need assistance. It is such a difference that I still have moments of frustration. I have moments of disbelief that I never recovered even close to where I was before. I seemed to be doing better when I was in physical therapy but slipped again when the season changed. That is why I tried a round of steroids. That didn’t work out so well. January my therapy benefits are reinstated. My therapist comes on Wednesday. We will see if it helps me or just makes me tired. I hate letting MS win.