December 6, 2016
Well time is officially running out. The wheels are in motion with disability for the end of my 2 years, May 17. I would officially lose my position, my career, my dreams. Dr P (family doctor) got forms to fill out so I had an appointment with him. My thoughts were so jumbled and I didn’t really know what to say, so I just let it all out. I have been feeling better lately. I can walk and I use the cane only occasionally, when I’ll be out and want some support in a store. I use the walker when I’ll be out and need to sit down (Rememberance Day service, Santa Clause parade). I haven’t used the wheelchair since the airport in July. I have been thinking I can do some office work. I still need to lay down every afternoon, but generally have good mornings, and have been able to make plans with people and generally keep them. I haven’t gotten sick since early August, which might be a record for me. I’ve been doing Aquasize for 12 weeks and have only had to miss 2 because I wasn’t well enough.
My symptoms persist and the chest pain is still near constant. My fatigue is still overwhelming at times and I still need to rest after a shower. I still have lower back/flank pain and blurry vision. My brain fog hasn’t been too bad lately. I still have days where it’s really difficult to breath. Walking is still very tiring and I still have concrete legs. But it’s all manageable right now. My fear going back to work is that my lifestyle is what’s making the difference. I sleep between 8 and 11 hours a day, and still rest in bed. If I start a chore or project and deplete my energy I lay down until I can try again. I don’t shower everyday. I wear sweatpants and comfortable shirts and sports bras. I make supper in the afternoon or morning when I’m feeling better. My fear is that, without these luxuries, I’ll go back to feeling like I did before, and I really don’t want to feel like that again. I’m not even talking about how I felt when I was at my worst in the hospital. I mean before, when I was getting bad. I don’t want to go shopping with a friend and secretly wish I could lay down in the aisle. I don’t want to come home from work, make supper and then go to bed at 8. I don’t want to feel like my legs can’t support my body. I don’t want to feel like a failure because I can’t do what I want to do. I don’t want to limit my water consumption so I have to walk to the bathroom less.
I don’t know if I have a choice in that though. I don’t know what disability insurance expects my life to be like. I don’t know what life is supposed to be like. How do healthy people feel? All I can remember is a time that I didn’t factor in those things. A time long ago that I woke up in the morning and just… did. It all just happened. I showered and shaved and ate and cleaned and walked and just generally…did. I may never just “do” again.
I’m still not giving up on a diagnosis. As always I have a plan for the next step. Genetic testing still, once I tracked down the number and found out that it’s only supposed to take about 3 weeks to get in. I’ve been waiting over 3 months. I asked for a referral to a rheumatologist, but that wait is 36 months. I still plan on practically begging my endocrinologist to help me.
When I saw Dr. P and said that all the other specialists either blame my Addison’s disease or tell me it’s all in my head he cut me off and said “It’s not in your head.” No matter how many times he says that I’ll never tire of it.
So the plan, after I see my endocrinologist, is to start a gradual return to work. 4-9 hours a week for 2-3 months at an office job to see how it goes.
All I can do is try. I’ve made it this far, and I just have to keep going.