Slow and Steady
Living with a rare chronic disease makes you extremely in tune with your body. I know what sets me off and I know how to push myself. I have learned what the signs of a reaction are to try to fend it off and I have learned how to prevent them. It has not always been like that though.
Seven years ago I would have a significant reaction one to two times a month requiring injectable medication. These reactions were never explainable but part of my reality. I never knew when in an instant a flip would switch and I would spiral out of control. It meant that I could not be alone with our then toddler son, drive long distances myself or stay overnight alone never knowing when I might fall apart.
Over time, however, with the addition of new medications, acupressure and trying to further reduce triggers I balanced out. My body calmed down just enough to avoid my monthly surprise mast cell attacks. Instead of one to two times a month, it could be a small number a year. I learned my body’s rhythm and very rarely would an unexplained reaction happen.
In the last two years I have now undergone two surgeries - one rather major, four iron infusions and two covid-19 vaccines. All of them are a huge hit to my already vulnerable system. Should I be surprised that I have used injectable benadryl more in the last three months than I have in three years? I guess not, except I am.
And while logically I suppose all of those hits to my system are potentially the reasons for these frequent reactions it still scares me. My most recent reaction took a full three days to calm down. It feels like a backslide to be back in this position again never knowing at what moment my body may take a turn downward.
Unsurprisingly I am triggered by my own fears of spiraling out of control and never regaining it again. Because I know it can happen, I watched it happen to my Mom. It is hard not to think that things will just get worse and worse and it is unsettling to no longer be able to anticipate what my day will hold. Will my body have a good day or will I fall apart?
But as March fades into April I am hoping with it comes easier days for my body and that I can find my rhythm again. That I can heal by spending more days finding joy and laughter with people I love and fewer days at hospitals and in recovery mode. I hope I can find a way to safely re-enter the world - to feel among the living and truly alive again.
And I will continue to remind myself what my doctor always says to me, to go “slow and steady,” to just take one day and one step at a time, listening to my body along the way. It doesn’t matter how long I take as long as I get there eventually. I have done this dance before and I know I can again.
Slow and steady…slow and steady….
