Life With Chronic Illness: Adding More to the Diagnosis List

It’s been a hell of a week. I saw a Doctor who focuses in Dysautonomia. He diagnosed me with POTS, neruocardiogenic syncope & Mast Cell Activation Syndrome along with other related disorders. He said I’ve been suffering from this for some time and looking back I feel like so many of my health struggles now piece together.

I'm supposed to start a list of new medications to combat this myriad of new conditions. They all contain inactive ingredients that are inflammatory, toxic, and triggering to the very conditions we are trying to address and for my already present chronic pain.

It took me three attempts to get these medications, one of which involved dropping to the ground in the Walmart pharmacy line to prevent from passing out. This wouldn’t be the first time this week I’ve dropped in public in the name of safety.

I'm supposed to drink 6 liters of water and consume 6 grams of salt per day. Most of the time when I ingest anything it just sits there and I feel nauseous, so I'm still trying to get down the same 6 & 6 I started with on Thursday.

My doctor said exercise is the most important thing I can do. Sitting of course, because my heart and blood pressure gets all wonky if I try to do something crazy like stand. That doesn't matter because I jacked my lower back up sitting and now everything, nerves included, feel like they are in a vice. Doesn’t make a good recipe for exercise.

I’m also supposed to wear compression stockings from my belly button to my toes. If I’m having a bad day I’m supposed to add in an abdominal binder. I started with shorts and today wore full compression for the first time. The upside is the compression is filling in the difference from the weight I’ve lost from the already mentioned stomach issues so my jeans are staying up a little better. Downside is that apparently my MCAS doesn’t like compression and I’ve had a rash and hives all day. Same response I get to yoga pants for longer than an hour.

My doctor also advised me to use a wheelchair if I plan to do any extended walking or if I will be in the heat. We live in Florida. It’s always hot. Under two years ago I was playing in National hockey tournaments. Today I’m being told to use a wheelchair. It’s been a lot to swallow.

He also told me to expect 6 months to a year to really start feeling better, assuming I follow my plan with “OCD tenacity”. There is a very fine line for me between healthy OCD tenacity and unhealthy anxiety inducing manic bordering obsession. I’ve spent the last 3 years trying to stay away from an obsessive health mindset and now my life depends on it. It should be a fun balance.

I’m not writing this to complain, for sympathy, or even encouragement. While I’m frustrated and overwhelmed, I’m blessed in so many other ways and am working hard to keep that in perspective. In my work I see so so many others that are much worse off and I’m grateful for what my body does allow me to do and all the wonderful people I have in my life.

I’m writing this so in the years to come when I come back across it and am reminded of this day I will see how far I’ve come. I will see how much I’ve accomplished when life felt so incredibly impossible and suffocating.

Also, this is real life with chronic illness and that’s important to share. It’s not all vape pens and flower pods…. But…on that note…it is kind of funny that I get diagnosed with a condition called POTS. 😆