I read a lot of inspirational stuff, and...I honestly try to inhabit each moment in my day fully, peacefully and with an abundance of gratitude, but this week I've been stuck.
I feel trapped by my body; trapped by my cells; trapped by my environment; trapped...period. It's hard to breathe when you feel this way. I feel so trapped that I don't even have anything insightful to write about feeling trapped.
I know what I want, and it isn't THIS.
I want to be well.
I want to wake up every morning knowing it's gonna be ok.
I want to never have to call an ambulance ever again.
I want to be able to go out with ffamily/friends and not have to worry about someone's perfume or a piece of dust potentially hurting/killing me.
I want to drive a car.
I want to be able to take myself out for breakfast on a Sunday morning.
I want to never feel those all over 'body migraines'. Pain sucks.
I want to sleep peacefully, without pain, anxiety or restlessness.
I want to never feel like a bear or 10 tonne boulder is sitting on my chest.
I want to be itchy free.
I want to be full of abundant energy.
I want my tongue never to know what tingling or swelling is.
I want to go a whole week without vomitting and gut pain.
I want my children to have their Mother back, in ALL capacities.
I want my husband to have his Wife back.
I want never to need this kind of cocktail of drugs just to keep me out of hospital.
I want white skin that never blotches or flushes.
I want to travel.
I want to take a bus, train or plane without fear of anaphylaxis.
I want to deal with paperwork that has nothing to do with ME and this failing body.
I want to be able to breathe all day, every day, without restriction.
I want to feel useful.
And the biggest 'want' that ALL people with Mast Cell Disease or Systemic Mastocytosis want...I want the old 'me' back, or some of it. And I want to stop wanting that because it can't be healthy, productive or useful.
I want to stop resenting people with 'normal' lives. It's the simple things that you miss when you lose them...
I want to stop explaining myself to people. Explaining Masto is exhausting. My God, there are soooooo many other beautiful things to talk about and think about.
And, finally, I want to be free.
Stuck is a lonesome place to be. And in the middle of nowhere, with no driver's license and nowhere to go (and invites that you can't go to because they are high risk & your body isn't co operating)...well, it's hard to see the beauty in that, despite my best efforts.
See...stuck. The roller coaster of Masto...up, down, up, down, up, down....