Today I am going back to living with MS because I have been very frustrated the past couple of days. On Friday I was in the gift shop and did ok. The day started with everything seemed to take longer than I had anticipated. My arms, legs and fingers weren’t cooperating. The mask I was wearing was bothering me, more than other masks I had worn before. I had shortness of breath and felt very lightheaded and nauseous.
When I got home I went to lay down and slept all afternoon. That’s not unusual, I’m always tired in the afternoons. This weekend I did that twice. I seem to be more tired than usual. My walking with the walker doesn’t seem to be improving or even staying the same. It is taking me longer to maneuver where I am going and my knee still hurts. I don’t think that has anything to do with MS. I probably should see an orthopedist, but I’m not confident in walking and I don’t want to use the wheelchair. The reason being is that if I go to doctors and unload the wheelchair and then within an hour I have to load it up again, it exhausts me. I have to take the wheelchair apart to lift it. When I’m volunteering, I am there for over 3 hours so there is plenty of time to rest before I have to take it apart and load it up again.
I saw a woman today in shorts walking in the neighborhood and I got so mad, (at myself). That’s how i used to be, damit! I want to do that again! Several times over the weekend I said how much I hated myself! Why after 27 years having this disease can’t I accept it and get over it and move on? I do what I have to do and make a great front, so happy, and I don’t need any help. Some of my friends tell me that “I’m their hero.” They are so proud of me and all I accomplish. I don’t feel that way. Sometimes I might have a proud moment, but it is very fleeting.
I am typical, there is nothing special about me. There are people I truly admire who take their disease and embrace it. They do admirable things like raise money and they discover ways in which to be helpful. Not me, I exist day to day. One thing I see on the commercial for Ocrevus they say, “I may have MS, but MS doesn’t have me.”I’ve heard that before. I don’t agree, MS does have me.
My therapist told me once that “we are human beings, not human doings.” I think of that often. I disagree. I was a person who did everything I wanted to. Now I see a red light on most things I want to do. I have found other things to do to try and compensate but I haven’t found anything that physically challenges me.
I’m all over the place today. I think I’ll just take a nap and hope tomorrow’s a better day.