Yesterday, I had a very normal day. I worked from home and stayed inside, out of the heat. I ate low histamine food and avoided triggers all day long. Around 8 last night I started reacting anyway and needed all the meds. Stability is like a mirage; it looks close, but I can never quite reach it.
There are a lot of people for whom mast cell disease is mostly a nuisance. My disease was never like that, but I sort of behaved like it was. I knew I would pay for it if I stayed out late or exercised too much but for a while, I could make myself do it anyway. I wanted to believe I could have any life I wanted. I wanted to believe that my body could take as much as my mind could.
But my disease isn’t just a nuisance and eventually it caught up to me, all at once. I don’t know about you, but mast cell disease runs my life right now. It will be at least a voting member for as long as I live. Mast cell disease isn’t something I gave into it. It is something that happened to me. To imply that by living within the lines it drew means I have less willpower or ambition is offensive. To say that I am weak because I have to avoid triggers as much as possible is just naïve.
And when people say, “I don’t let my disease control me,” all I can think is, Well, there’s still time for that, isn’t there.
I used to be so independent. I used to do everything myself. Now I have to have people drive me around most of the time, I have to get help to carry things, my friends come over and do chores for me, I can’t travel alone. Maybe my apartment is messier than I would like, and I always have unfolded laundry piled in my basket chair, but I can work full time, and see my friends and family, and be safe.
I still have dreams. I still want to do things I know I’ll never be able to do. Every once in a while, I’ll be talking to someone about these things and get really excited. I think to myself, if I could just hold onto this feeling, I could do this. But I never can. This loss of possibility is the hardest for me.
For some of us, this is as good as it’s ever going to get.