On a physically good day, self-doubt creeps up on me. I remind myself that my disability is invisible to the naked, untrained eye. I'm frustrated that no one can tell by looking at me. I loathe the fact that most people automatically assume the reason I park in a handicapped space is because I'm lazy, not because I have Forestier's disease (also known as DISH). My bones, tendons and ligaments are slowly calcifying , making simple everyday task, nearly impossible. My problem is partly caused by excess growth hormone, which has also caused many other unseen problems with my life. When I tell people, they lovingly wish me a 'get well soon' or 'hope you feel better soon'. I want to yell back that I will never actually get better, so I stopped telling people. I let them think what they want to think.
Some days, I clean the house top to bottom. The next day I can barely bend down to put my shoes on. Pushing a vacuum cleaner becomes nearly impossible and forget trying to lift anything even if it only weighs a few pounds. There are days when I want to give up. Then there are days when I want to fight back with all my strength, but I find it hard sometimes to find that strength.
My neck, spine, shoulders, knees, ribs, and feet are all lined with bone spurs that squeeze on the nerves causing pain that is very difficult to control. A huge one that has formed on the back of my throat makes it difficult to swallow, hard to breathe if I do any type of exercise, and I'm slowing losing my ability to talk. I stopped explaining to people years ago that I was dealing with a unknown attack on my body. I stopped caring if people knew that I smoked marijuana to control the pain enough to function. I stopped doing a lot of things I use to enjoy.
The excess growth hormone is also causing ridges to form on my head which is causing pressure that feels like someone is continually squeezing my brain. Headaches are almost a daily thing which makes it hard to think clearly on most days. I easily forget things I'm doing, even if I'm in the middle of doing that thing.
I'm still struggling with HAE, but I'm learning what foods to avoid and what foods I can safely eat. Big problem with that is the food that I can safely eat cost way more than I can afford most of the time, so I'm left eating things I shouldn't and hoping I don't have a reaction or choke because of the bone spur that is pushing on my throat.
Its slow, insidious creep through my body at times frustrates me, angers me and frightens me with equal measure. Should I try to explain to others or just smile when people ask and say 'I'm fine"?
I am learning to live with the constant pain; It is my constant companion.
I don't know when I'll come to terms with the changes that is being force upon me. Is there a future for me? Maybe. It's just a different future than the one I had envisioned just a few short years ago.
Tomorrow is Thanksgiving and I will get up, get dressed, slide my house slippers on, smoke a joint, and smile when family stops by for meal. I won't bring up the fact that my body is in pain, that old age and a decaying body is leaving me with little hope. It makes it very difficult wondering if I'll be able to do the things I doing now, next year. There is no cure for what I have. I can only live each day knowing for now I'm still alive.
