So it’s been a month and change since the POTS diagnosis and the new meds and my word, it feels like a game changer. Don’t get me wrong, it’s not a magic fix and things aren’t suddenly drastically better, but at the same time… things are sort of drastically better?
The main reason we were looking at having to move had been because my heart was acting up badly enough that in the event of an emergency, I wouldn’t be able to get out of the building. When I was hospitalised in 2021, it took 15 minutes to get me from the flat to the ambulance; they can’t get a stretcher up or down the stairs because of how steep and narrow they are. Nothing to do with my weight. But my heart rate issues were so bad that I was having to take a chair to the top of the stairs – which is less than 3 metres from my desk chair in the flat – and then rest for a few minutes while someone else took a second chair to the ground floor landing. Then I would slowly and carefully get down the stairs and have to rest on the second chair again before trying to make it to the front steps where I could wait for the car.
The last two times I’ve had to leave the house, since starting on my new meds, I have made the trip to the front steps in one go and haven’t even felt that bad. Admittedly, it has to be a good day and that’s the start of said good day, but that’s still massive improvement.
Getting back up is still hard. My legs still get heavy and weak, and I need support on steps that don’t have rails, even if they’re low steps. I really need to recondition my leg muscles. But my heart rate is no longer trying to kill me, and that makes such a difference.
There are things I can do to mitigate the issues, too. Using the wheelchair to mobilise when I need to go out is just sensible; I need to save leg effort for stairs. POTS comes with a big old whack of exercise intolerance, which is something I’m still struggling to accept as a real thing despite my doctor’s assurance that yes, it very much is. Society has taught me that as a fat person I’m just lazy, after all, and undoing that is a lot of work. And I do need to exercise! Just… very very judiciously. In ways that most people probably wouldn’t really consider exercise yet. But it’s all a start. Reconditioning starts somewhere and for me that’s moving my legs around while I’m in bed and taking short walks onto the balcony.
The thing that’s been getting me is just how rubbish my body is at anything these days, often in really stupid ways. POTS is a form of dysautonomia, also known as “the stuff your body should do automatically doesn’t really work anymore”. So it leads to things like it being 9 degrees last night and I still needed to sleep with my fan on, because I go from too hot to too cold about six times a night with very little input from the actual temperature. Or “I ate lunch and now I’m exhausted because I can’t remember how to digest”. Or the ever-persistent brain fog that has me sure I responded to people and then a week later, the mortifying ordeal of nope, I just thought I did.
But rubbish body aside, improvement is there. I need to be realistic about it – I’m not going to be one of the people whose POTS resolves. The fact that I began exhibiting such sudden and severe symptoms, after an extreme pituitary event that has caused irreversible adrenal insufficiency, means that, in all likelihood, this is going to stick around forever. There are too many things damaged beyond repair in my endocrine system. But that’s, oddly, okay. I have some answers, a lot sooner than most people dealing with POTS get them (average length of time from start of symptoms to diagnosis is 4.7 years and about 7 doctors, apparently). I have a good team working with me and I’m responding well to the medication. I can still sew, we’re working on the brain fog and the reconditioning, and I can see a light at the end of the tunnel that isn’t attached to a train. It’s a different colour than it was ten years ago, but that’s okay. I like different things now. We’re still going to need to move eventually, because between me and the Collector living up stairs isn’t a long-term prospect, but now we can wait for the right place, and we need the right place. With our combined needs, we can’t settle for the okay place.
So things are going okay. Diagnosis is a real changer. It’s the anniversary of my getting the insulin pump and that was also a game changer; my diabetes has never been under better control. In fact, of all the things I have going on, the diabetes is the least troublesome at the moment. I am working on eating consistently so my body stops thinking it’s starving (hard to do; I have no appetite or satiety most of the time, and yes, I know, CICO, but look, I have tried VLC diets and they did not work and nobody knows why except that my body is broken). I’m working on drinking enough because one of the issues with POTS is low blood volume, which makes a lot of sense with my symptoms. I also apparently need more salt, which, ha all the doctors who looked at me and saw a fat woman and went “stop eating salty fatty food, your heart is in awful shape”. MY HEART IS GREAT.
Seriously, of all the things I have wrong, my heart is not one of them, which is frankly a miracle given family history but I’m amused by it. I’m practically a textbook picture of “fat woman with heart disease” but nope, my heart function is great, the structure is fine, it’s not even enlarged! It just works too hard because my endocrine system goes “AHH WE’RE STANDING UP”.
Anyway. That tangent aside, I’m feeling pretty positive right now. That feeling is helped by the fact that I have a cat on me helping me play Stardew Valley.
The Medical Snowflake Diaries 