The Illusion of Control

This weekend as I walked in from an outdoor safe visit with friends I felt my slide begin. Nothing had changed or happened but my body was racing down the rollercoaster I didn’t even know I had reached the top of. I took my normal meds but could feel I was worsening. After waiting the 20 minutes for the medication to work, I could see I wasn’t improving fast enough to stop myself from a crash landing.

I already had drawn up the injectable Benadryl which clearly meant my subconscious knew I needed it so I injected it into my leg. It was the right move. Riding the hills of the reaction until I could make it safely to the end is always torturous and scary. I sat on the couch holding my husband’s hand to help ground myself. Eventually, things calmed down but even hours later, my body is still left trying to recover.  

While I have learned to not ask why I react, some days like today when it came on so suddenly it is hard not to.  Did a bug bite me? Is it because I played with lowering a medicine earlier this week? Did my hormones shift? Or is the stress of month six of a pandemic starting to wear on me - especially as we make what feels like life and death decisions about the school year. I know the reason doesn’t ultimately matter but when I don't understand what caused it how can I prevent it from happening again?   Any time I have such a massive reaction it is hard not to worry that this is now going to be my norm - like I was only a few years ago.  Logically, I know one reaction does not mean I have taken huge steps back but my rare diseases are not logical.  It is hard not to feel a little bit hopeless and a lot defeated by my body as any illusion of control I thought I had has now vanished.

And while I am practiced at losing things to my rare diseases I wasn't expecting to today. I felt like I had the upper hand and that I was maintaining good control of things recently.  This jolted me back to the painful reminder that no matter how much I try to will my rare diseases away they are indeed a part of me.  And, if I am being very honest I know they will continue to take things away from me- even things I thought I had fought for and won.  That is the rare disease dance - one step forward two steps back.  

But I also think reactions are my body’s way of telling me I need to find my center again.  That I need to slow down, breathe deeply, listen to what my body is saying it needs and above all else be kind to myself.  Right now as we are all faced with constant loss self-care has never been more important.  

This coming week we were supposed to be at the beach  - a tradition six years in the making and sadly it was too complicated to figure out how to make happen.  But I am still challenging myself to find a way to take a break this week- to let go of work and Fall plans and the worry and stress that engulfs us all right now. This is, in fact, what I am in control of.  So as a hard day comes to a close I take a deep breath and I remind myself that not every day is a good day but there is always hope for a better tomorrow…so here’s hoping!