how to lose a bunch of writing time

cw: chronic illness experience

I’ve had a fair amount of time now with my chronic illness diagnoses ¹so far: EDS (Ehlers Danlos Syndrome), MCAS (mast cell activation syndrome) and POTS (postural orthostatic tachycardia syndrome) — my doctor has been very good at pinpointing what’s going on with me and giving me diagnoses that are helpful, for which I am grateful.

I’ve had a chance to learn how to manage most of my symptoms, and the meds I have right now are as helpful as meds have been thus far. Unfortunately, even though I have better information and practice around taking care of myself (including asking for help taking care of myself before I become unable to ask for help) during most of my symptoms and symptom triggers, this doesn’t mean that I can have a regular kind of day every day. There are still swathes of time in which I have needed to rest because if I didn’t, I might end up in a medical emergency.

My experience through the thirteen days and the couple of weeks since then has been one of carefully spinning only as many plates as I could manage each day, plus a little extra effort where it was needed. I was near my limit but not over it. AND THEN. I had a day where one too many things happened and I had a POTS episode ²I have the rarer (so far) version of POTS where instead of just my blood pressure dropping and causing a fainting episode, first my blood pressure goes way up and I usually have a cardiac event plus the aftermath of wonky blood pressure. I lost several days to just trying to recover, and several days past that I was still not able to do as many things as usual. It is massively disheartening to know that my body’s needs will ensure they have top priority, by making me unavailable for things other than resting.

The correct meds to treat most of my symptoms are a collection of antihistamines, steroids, anti-inflammatories & NSAIDs, but the downside is that the meds themselves will cause me to need extra time to recover. If I’m having a POTS episode that turns into a cardiac issue, I will need a rescue antihistamine and a nebulizer with albuterol, both of which will keep my blood pressure up too high. There’s always a period of time after a POTS episode when I have a too-fast heart rate but no energy to even get up from lying down. I can breathe and am conscious BUT AT WHAT COST (hahahahaha cryfaceemoji.gif).

Plus, one of my biggest triggers for all my chronic illnesses is emotions and how I’m feeling them and how big they are, so I have had to learn not to panic — as much as it’s possible — when something scary starts happening to my body. The thing that pushed me over the edge into an episode was a big emotional thing that I didn’t have room to process, so all my spinning plates fell down and broke.

To recap, I apparently am not always superhuman, just sometimes.

Last week Wednesday, I had a POTS episode that was the most severe in a while (I used to have them often, back when I was first diagnosed) and it took me DOWN. One of the hardest things about it wasn’t processing my stuck emotional feelings, it was letting go of the possibility that I could still do everything and also recover. I had to ask for help. I had to stop for a while. I had to put it all down, and that is incredibly hard for me to do.

I’m still recovering, but I am doing much better than I was. This means: I can sit up without feeling like I’m going to fall over, I can use my computer without getting so worn out by the act of typing and mousing that I need a nap, and I can go up and down the stairs and do a few loads of laundry each evening. I can hang out with the toddler during my shifts and goof off with him. I can occasionally pick up something that someone else had to drop in order to take care of themself.

At the very least, having these chronic illnesses has put life itself into a new perspective. There’s nothing quite like how it feels to be able to do things after not being able to do things. It’s like that first swallow of cool water when you’ve been thirsty for hours: indescribably beautifully good.

I hope your days have been good and your nights have been restful.

— Nix

featured image is a webcomic by poorlydrawnlines, one of my favorite comic creators

Footnotes

• 1
  so far: EDS (Ehlers Danlos Syndrome), MCAS (mast cell activation syndrome) and POTS (postural orthostatic tachycardia syndrome)
• 2
  I have the rarer (so far) version of POTS where instead of just my blood pressure dropping and causing a fainting episode, first my blood pressure goes way up and I usually have a cardiac event plus the aftermath of wonky blood pressure