So I have a gen change this coming week and to say I've been anxious and nervous would be an understatement. I went from them telling me I had 6 months left on my battery in July to them saying I had 3 months left in Sept to calling last week after I was woken up out of a dead sleep from the most awful feeling double bass drum in my chest saying my surgery is next week.
At this point I know they're not telling me everything, which they never do... but I can't even really express my concerns around my family or friends because all it does is stress them out. My first implant was an emergency surgery and did not go well. I woke up during the surgery. Ended up unresponsive for over 20min 2 hours post up and was hospitalized for almost 2 weeks with them talking about air-caring me to Cleveland clinics because a bunch of weird shit kept happening.
So when they say this will be an easy surgery, sorry but I don't take that at face value. None of my surgeries have ever been easy. There is ALWAYS a complication. That's not being pessimistic, it is just a fact. My body doesn't seem to handle things well. I have POTS, my autonomic dysfunction should win gold medals for its level at NOT doing its job.
I have confidence in my EP, but I don't have a lot of confidence in my body. It just doesn't handle any kind of trauma well. I went from pacing 37% to 57% to 78% in a matter of weeks. Add in some arrhythmias and some RA to top it off and I've felt like hell.
While I have a wonderful support system it's crippling at times. My dad used to be my go to guy to talk about this stuff with. He went through it all so he understood my moods and my fears and the physical pain, but he's not here anymore so there's no one to turn to that truly understands.
The rest of my family can emphathize but they just don't understand the level of exhaustion. Or my frustration when I feel okay and have energy in the mornings and want to do things for myself vs them not letting me because they're worried I'll over do it. I'm not an incapable, I just get tired easily. Yes, I'm either pacing or my HR decides to take off like a rocket and I'm zoomin from 150-180. I haven't topped out in the 200s in quite a while so my meds are helping.
Anytime I'm having a hard time or don't feel well they want me to call the doctor. And say what exactly? They already know everything I'm dealing with. They can't fix any of it. Only manage it as best as we can, which is what we've been doing. I'm so sick and tired of hearing have you called your doctor? I've tried explaining to them bad bays happen and it just is what it is. So that leads me to internalizing and doing my best to not comment when I don't feel well so I don't have to hear it. Then again it's hard to them to miss me grabbing onto a wall or counter when everything goes black. Shit happens. My doctors are aware. We're doing the best we can. But fuck it's annoying.
In all honestly until I get my change next week I've been having a hell of a time going to sleep. Because I don't know if I'll wake up. If my battery is dying that quickly and my arrhythmia are picking up and getting worse who's to say what could happen. I pray it won't, but it does scare me. Can I voice this to anyone? No. Do I have the time to find a therapist? No. Do I want another one? No. All the do is tell me I'm very self aware 🙄
thank you for letting me rant and get all of that off of my chest. It just feels like I'm the ring leader of the shit show right now. Typically I live my life every day as it comes and try to make the best of it. But man it sure would be nice if my body would cooperate for just a little while.