Long story short, things have taken a drastic turn. I don't know if it's my Endo causing my health spiral, or a combination what pots or what the fuck going on.
Even though the PoTs symptoms I've been experiencing have been going on since I was around 13 (i'm 28 now), in November 2023 they took a nosedive, resulting in the diagnosis of PoTs, vasovagal syncope and cardiac dysautonomia. I'm not on two types of medication, and should be thrilled after years of gaslighting and trauma that I finally have a diagnosis.
I'm confused. Not about the diagnosis time, having Endo too so am no stranger to having my pain and symptoms ignored, but why after so long has it gotten so bad. I've never been healthy, my endo can keep me on a pretty tight leash, but I seem to have lost so much in the last 5 months, more than I have in many years. I used to drive, go on walks, go to the gym. Yes, my spoon count would be effected, but I had learnt to manage it.
They took away my drivers license, so I'm feeling more of a burden than normal. I can't walk to work instead because walking for more than 15/20 has suddenly become impossible without an onslaught of symptoms. It's to the point that we've had to debate a wheelchair for tasks like doing the weekly shop. Last year I'd began accepting some sort of mobility aid for bad pain days, now all of a sudden I'm looking at mobility scooters and wheelchairs. I'm 28. I'd gotten pretty good at ignoring the stares and whispers from people who don't see anything physically wrong with me, but the looks whilst trying a wheelchair just pushed me over the edge.
I'm normally such an advocate for chronic illnesses, but right now I'm just stuck in a loop of thinking how unfair this is. I was doing okay, I had adapted to the chronically ill life finally after years of accepting it as part of me, but this? I'm constantly exhausted, my fatigue is in overdrive, I've lost my independence and don't even recognise myself.
I got married in October 2023, and I can't even recognise the person in the photos. Where did she go? She could drive, was preparing for a honeymoon where she only had to worry about the other CI's she'd gotten used to dealing with. She was on her feet most of the day, and first and foremost, she was happy.
I feel so guilty for my husband, who has had to witness and deal with more since we've been married then in the 9 years we've been together.
This isn't really a post asking for anything. Every year or so, I've ended up letting out my feelings in my Endometriosis community, but I don't have one for PoTs. I'm just upset, and lost, and struggling to once again have to accept my new normal. I dont know what symptom is coming from what CI, I'm due to have my coil out this year and I'm just angry and sad and feeling sorry for myself.