A Quick-ish Health Update

Hi friends. This is just a little health update from me to keep ya'll in the loop. I'm not feeling super great about things right now, and I guess this is my new normal. I'm missing just living life to my full potential. I hope that someone out there feels a little bit less alone in their struggles if they happen to stumble across mine. Enjoy.

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A Quick-ish Health Update

Following my 4th appointment with my POTS physio, and having completed the NASA stand tests this time, the physio has said I have both POTS and OI (Orthostatic Intolerance). The NASA stand test is a test where you lie down to get your base readings, then stand for a long time and have your BP measured every minute for 10+ minutes. It's a common test people do before going to space. Interestingly, lots of astronauts develop POTS when they come back to earth (sometimes, it's temporary for them, other times it's not). Having both POTS and OI means that when I'm upright/standing still, my nervous system doesn't function properly, and the body responds with things like tachycardia, changes in blood pressure, fatigue, dizziness, nausea, and sweating, etc. Basically, it's nervous system dysfunction (dysautonomia). As the physio is not a doctor, she cannot officially diagnose me, but she told me point-blank that I have these conditions. I also struggle with this physio as she has made jokes about me being in a DV relationship and continues to bring up binge eating disorders, even though there is no evidence of either of these things. She also told me I'm too young to have any heart conditions and can be really mean in her demeanor - she has a letter from my GP to say I experience white coat syndrome, but she doesn't believe me or my GP re BP rises (my BP is normal at home). She can also be quite contradictory in the things she says to me. For example, one appointment I was told to cut back on my medical appointments to help with medical fatigue, and that I'm not going to die if I push them out, and the next she's yelling at me for not having done my iron blood test and tells me I HAVE to go and order more blood tests for cholesterol because I'm going to die (what?). I'm halfway through the programme and don't really have the energy to complain to anyone else, and she's the only dysautonomia physio. I'm sorry if this reads as me being bitchy, it's just hard to deal with someone who doesn't know how to make their patients feel comfortable. It's also getting really expensive - every week it's "get this" or "get this," and I get it's to make my life easier, but it's very overwhelming.

As these tests are designed to induce flares, I had a very scary night on Tuesday after my appointment, where I woke up feeling the worst I've ever felt (yay /s). This further confirms the POTS "diagnosis". I was feeling okay after my test, so I did a little brisk walk around the block after dinner that night - which, in hindsight, I don't think it was a good idea, but I was never told not to. Anyway, when I went to bed, I had a bit of a headache and some pain in my chest. I woke up around 1 AM to go to the bathroom, and I felt the worst I'd ever felt. I was nauseated, dizzy, my chest pain was really tight, and I struggled to hold myself up. I spent most of the evening on the floor with my legs up and an ice pack on my head. When I was able to sit up, I started throwing up. I didn't go to the emergency at the time because I honestly don't think I would have been able to handle it, and what are they going to do? Give me fluids and tell me to go home when everything is normal (as has happened every other time). I decided I'd wait it out, and the symptoms subsided eventually. So yes, these symptoms were caused by the stand test. If I hadn't had that test done, I would have gone to the ED or called an ambulance.

As for my blood markers (high platelets, high red cells, high white cells & high CRP), the physio doesn't really understand anything about blood disorders (as obviously that's not her speciality), but blood disorders can cause dysautonomia. At this stage, we are still watching & waiting to see what my platelets/cells do. Based on the blood markers, we can only say "suspected ET/similar," as there's no other explanation at this stage (no IBD, no infections, no obvious autoimmune conditions). And it's not like I'm dehydrated (they've been like that every single test for at least 3+ years).

So that's where I'm at. All I can really do right now is continue to implement my lifestyle changes, focus more on anti-inflammatory foods, and trial this new exercise programme I've finally been given (I thought we'd be focusing on exercise at the physio appointments, but instead it's this weird dystopian experience having to monitor all my symptoms and show them to a random lady I don't feel comfortable with). In saying that, there are things that help, and I'm trying to do them as much as I can.

As always, I hope my vulnerability makes others feel a little less alone in what they're going through.

Thank you for reading.

Ash x