Frustration

I finally received a diagnosis. It wasn't the answers I was promised.. it seems to be simply a directive. I "very clearly" have PoTS, I also have Inappropriate Sinus Tachycardia, a possible inner ear imbalance, and there's a concern with my hyper mobile joints. I'm dysautonomic; basically all the things that are supposed to work on their own, do not work right, the prime symptom is getting dizzy when I stand up or stand too long.

I'm chaos. Seems appropriate.

I've been living with this for a couple weeks. Ignoring it, really. My body finally forced me to acknowledge everything.. the diagnosis, the upset, and mostly, the frustration of so many years wasted on doctors not putting the pieces together. We'll never know how long I've actually been dysautonomic, just like we'll never know which defect in my leg caused the other defects or if they were just always there. The frustration stands...

I still remember clearly, finally getting the courage at 17 to tell my doctor I was tired all. the. time. He very matter of factly asked if I was depressed, not realizing I didn't actually know what depression was at the time, I said no. He quickly wrote me off with "everyone gets tired". I didn't bring it up again. I worried about dizziness when I was 20; I was told to eat better and handed a prescription for vertigo that never helped. At 16, I was diagnosed with asthma because of trouble breathing (especially during sports) and a family history made it an automatic diagnosis. The inhaler only helped during sports and I quickly escalated to three inhalers and moved higher on the asthma spectrum; my low use of the inhalers didn't make sense, so I made up ones that did... when I finally announced I didn't think I had asthma or at least not beyond sports asthma, I was reprimanded. Despite not using an inhaler in over 5 years, my doctors now are still afraid to agree with me. I spent 5 years going through GI doctors like tissue paper; I felt like an experiment with most of them because they ended up focusing on one symptom (the weight loss, my periods, acid reflux...) and medicate the hell out of it, then blame me for the medication not working. Eventually, I was handed IBS with no treatment and freed from more visits; I eventually discovered my food allergies on my own. At 25, I complained of what I still believe are tension headaches, and was diagnosed with migraines and loaded down with prescriptions; the prescriptions didn't help and I was ignored when I said painting helped stop a headache. I didn't bring up headaches again.

That's my medical history; bringing up my concerns and either being written off or medicated, and it was always my fault or just in my head when the medications didn't work.

I'll be honest, yeeeeears of vindication settled on me as the doctor proclaimed "very clearly" it wasn't just all in my head.

And then regret fell on me, just like when I finally got my first diagnosis and surgery on my knee. How different would things have been if I had gotten a diagnosis before all the damage had been done? Where would I be now? I know we can't go back and I don't think I would even if I had the opportunity, but it's a hard thing to live with.

Last Sunday, I spent too much time in the sun and didn't get enough fluids; the next day, I was too dizzy to even stand, and it's taken me all week to recover. Yesterday, I finally realized it was a harsh look into how important it is for me to take care of myself at all times. No slipping. I'm not just listening to my body anymore, I'm also dictating what I know it needs, and I have to do it right. I refuse to slow down and I want to spend days in the sun, so I'm learning how to do that and not make myself sick. It's a hell of a learning curve, but I'll get there. In the meantime, I accept that I'll make mistakes along the way and I'll embrace needing to take a day off sometimes... so I don't have to take off a whole week ;)