Finding and avoiding things that trigger our mast cells to degranulate is possibly the most important thing we can do to help ourselves. Our doctors can give us medicines and help us in the ER but only we can suss out our triggers and create our medically necessary “safe bubbles”. It’s a very personal thing.
It’s a very frustrating endeavor, too, I’ve learned.
I am only a year and some change into being diagnosed and I can honestly say that it would be easier to list all of my non-triggers at this point than it would be to go through the laundry list of things I need to avoid on a daily basis in order to keep my mast cells in check.
It’s freaking exhausting!
And, to be honest, it’s quite depressing at times because there are so many potential triggers and there are so many variables so it’s a never ending game and once you begin you can’t ever stop.
Just knowing you are on the “trigger treadmill” for life can create mountains of anxiety and stress in and of itself which, ironically, triggers more mast cell degranulation and should be at the top of everyone’s list of things to avoid.
So, to put it plainly; managing this disease creates stress which triggers more degranulation which creates more stress which….
It’s a vicious cycle for those of us stuck in it.
It has taken me months (months!) to create an environment here that is relatively safe and trigger free (for me!), but it’s definitely never going to be ideal because for one, I can’t leave my house and two, even here, where it’s “safe” I am, admittedly, my own worst enemy when it comes to trigger control/avoidance.
Part of it is our lifestyle and my addiction to gardening. I’m creating triggers right in my own front yard and I don’t think it’s ever going to stop for me. I’ve given up so much in my life already and like most mast cell disease patients, it’s painful to think of all of them so I try not to.
Still, I’m sure we all have our limits. At least I do. I can’t, or rather, won’t give up my flowers. I am willing to do whatever it takes to find a balance if that means taking extra meds or wearing long sleeves and gloves or a mask. Maybe some days I can only admire them from afar, behind my window glass, in the safety of my “inside bubble”.
The point is, I will admire them whether my mast cells like it or not (!). Better yet, they can bloody well learn to like flowers as much as I do!
That’s the funny thing about mast cells. They don’t care what we want. The same with triggers, too. Some (not all!) can change from day to day. Some days I can be outside on a warm, sunny day, knee-deep in my flowerbeds and have no problem whatsoever. It might be that the medicines are working extra well or my mast cells are distracted or ??(!)
I may go the rest of the day without being really sick, or it might hit me a couple hours later. Another day I can just open the blinds and the blinding sunlight feels like I’m in an interrogation room and makes me instantly degranulate and I can forget about stepping outside!! It’s just not happening.
It’s so unpredictable that I hate giving up things permanently when they don’t always trigger me. Or seasonal things that I know will be gone all too soon and won’t come back until the snow melts and the grizzly bears wake up again next spring.
I will have all winter to be in my “inside safe bubble”. Plus, when it comes to things like my flowers, they are truly therapeutic; I feel the stress and anxiety just melt away when I gaze at the lovely view they create. So some triggers are just worth it.
Now you know why it’s so hard to be good.
At least for me.