I had a post about food issues, but WordPress eated it. (Are cat macros cool again?) Anyway, it was depressing and I don’t want to rewrite it. Suffice it to say I have complicated food issues going all the way back to my diabetes diagnosis.
Today’s 3am ruminations: it’s weird how much a diagnosis can change things while not really changing much.
I had my first appointment with a new cardiologist last week. I was not looking forward to it, because my track record with cardiology is not good, ranging from the guy who seemed incapable of comprehending that I have type 1 diabetes, not type 2, to the rapid access team who looked at my test results and went “We have no idea, sorry, don’t come back”.
This guy, though. He’s lovely. He has a great bedside manner, he listens, he explains, and he doesn’t chalk everything down to my weight. We talked about weight loss surgery, briefly, in the context of things I’d discussed or tried with the obesity clinic before everything fell apart, but he doesn’t think WLS would be helpful in my case, or worth the risks that surgery poses to me. WLS works primarily by reducing your stomach capacity or your absorption, and my body already has trouble on both scores; making it worse would not help me lose weight. So we agree on that, and it’s off the table.
I described my symptoms. He asked some clarifying questions, and then: “Do you know about POTS?”
Postural orthostatic tachycardia syndrome. It’s when your body decides it doesn’t know how to deal with the usual little calibrations it needs to do to keep equilibrium when you stand up. One of the key symptoms for diagnosis is your heart rate elevating by over 40 bpm within 10 minutes of standing up. Mine goes from 80 bpm when sitting to 140 within seconds of standing.
So. POTS. As the word syndrome suggests, it’s not so much a discrete disorder as a collection of symptoms. It’s ten times more common in women than in men, like many autoimmune disorders, and tends to develop after a trauma to the autoimmune system. Like, I don’t know, that year of inflammation I had in 2019 that was sharply followed by almost total pituitary collapse in early 2020 and everything going rapidly and severely downhill.
So that answers a lot of questions.
The unfortunate thing is that, like so many of my complex issues, there’s no real “fix”. There are things we can do to help. I’m starting on a new medication that will hopefully help my heart chill the heck out. I’m supposed to avoid physical and emotional stress. I’m apparently supposed to drink two litres a day and eat more salt because people with POTS are very prone to both hypovolemia and hyponatremia. (This does explain how easily I get dehydrated and how often I crave hot chips, I suppose.) The doctor is keen to get me swimming again, as am I; it’s a safe, low-impact exercise that will hopefully help rebuild some of the muscle tone I’ve lost. But I’m not allowed to do much. I need to keep moving around, but very lightly. It’s weird having a doctor caution me against too much exercise, and “too much” being so little, but in my current state, my exercise intolerance (an actual medical term!) is severe, and pushing will only make it worse.
So it’s weird. Not much has materially changed, and yet everything feels different. I suppose I feel validated, in a way. A specialist has agreed that I’m not just this sick because I’m a fatty fat fat who needs to put down the cake, and has given me a word for what’s wrong with me. We’re being realistically and cautiously optimistic about my prognosis. I’m never going to be well; that ship sailed back in 2020 along with my pituitary function. But I can be better. That’s something to carefully work towards.
The Medical Snowflake Diaries 