I am trying to come to terms with being disabled.
I thought I had come to terms with that in the hospital when my doctors told me to forget looking for a cure and start focusing on management but I really had no idea the frustration, anger, and disappointment to come.
You see, I never sat in my window seat and daydreamed about having a chronic disability some day. I daydreamed about being a Supreme Court Justice, a movie star, and an all around enviable human being.
Wrapping my brain around the reality of my condition is humbling. I can accept on some level that my life has new limitations but the extent of them is making acceptance hard. I get panicky when I can’t work as much as I want to or feel I should and I get sad when I have to miss social occasions. I often feel as though I am missing out on so much.
It has to be missed though, I have to come to terms with this. As I ramp down off of the medication that keeps my migraine to a dull roar I realize this is my life. I had three and months of really low pain where I was able to accomplish some cool things. Now I have six weeks of ramp down time, a month-long medication “Holiday”, and then six weeks of ramp up time before I get to enjoy another three months of low pain. That is the nature of the beast. If I can stay on this medication (if during my “holiday” my CatScans and MRI’s don’t show any fibrosis) then I will get approximately six months each year where my symptoms are under better control and I am able to accomplish more than I am the rest of the year.
I have to makeover my expectations and get comfortable with needing help, missing out on things, and not being able to work a traditional job.
Dan is a huge help here. His only requirement is that I do not give up. He is supportive of me finding ways to stay involved and active within the confines of my new limitations. He is proud of me for trying and values my contributions, even though they may only consist of packing his lunch, cooking dinner, and listening to him discuss his day when he arrives home.
I cannot stress enough how vital having this degree of acceptance is to me. He has accepted me with a whole heart, including the limitations my disability causes. His acceptance makes it easier for me to forgive myself for falling short of my own harsh and demanding expectations. In short, his acceptance has paved the way to mine.
I continue to try to redefine my life. I run three days a week and swim two. I try to eat well. I clean the house, make jewelry, work a few days a week, and contemplate writing a book. I snuggle the dog and cat and play with the children. I set aside spoons for Dan’s days off so I can spend time walking all over the city, driving into the mountains, or simply puttering about the house with him. I rest so I can push through the pain and remain involved in my life.
I should discover this October, right around my 40th Birthday, if I am going to be allowed to remain on this medication. If I can than I will live the next set of low pain months happily and use my time wisely towards my new goals. If I am not allowed to resume taking my medication then I will face additional challenges.
Either way it is time for me to makeover my expectations so that I can be my own helpmate. Indulging in disappointment, fear, and rage only saps my already limited energy.
If I cannot do the things I once dreamed of it is time for me to dream new things.