My life changed on 3rd July last year, and I honestly don’t know how much more I can take.
Since 3rd July last year, I’ve been dealing with what seems like POTS or some form of severe autonomic dysfunction, but nobody can tell me what’s actually wrong. My entire life has been turned upside down.
Before all of this, I weighed around 66–70 kg. I’m now 60.5 kg at 6’0”, and I’m becoming severely underweight. Eating has become a nightmare because it leaves me exhausted, breathless, nauseous, and sends my heart racing. My appetite has almost completely disappeared, so getting enough calories in feels impossible. Everyone keeps commenting on how pale I look.
The symptoms have become so bad that I’m basically bedbound. Some days I can’t even brush my teeth. I can’t have sex. I can’t live anything close to a normal life. Today I walked just 0.2 miles to my GP surgery for a blood test and genuinely felt like I was going to pass out.
What’s confusing is that my heart isn’t always fast. Sometimes when I’m lying down it becomes severely bradycardic, then as soon as I’m upright it can feel like it’s going crazy. I’ve had an echocardiogram and a 24-hour ECG, but both were essentially normal. The problem is the ECG was done while I was just sitting in bed, so it didn’t really capture what happens when I’m standing or trying to function.
I’m waiting for an endoscopy later this year, but I feel like I’m deteriorating while I wait. Every day feels like survival rather than living.
The hardest part is that nobody seems to have any answers. I’ve spent the past year watching my health decline, losing weight, losing independence, and losing hope. I’m exhausted physically and mentally.
I’m reaching the point where I don’t know how much longer I can cope living like this.
The worst part is that this illness hasn’t just taken my health—it has taken my life. I lost my girlfriend, who I was with for over a year. She supported me so much through all of this, and I miss her every single day. I genuinely believe this illness ruined our relationship. I constantly think about how different things could have been if I hadn’t become ill.
I’m not looking for a diagnosis over Reddit, but has anyone experienced anything similar? Did you eventually find out what was causing it? Was it actually POTS, something gastrointestinal, an autonomic disorder, or something else entirely?
I just want my life back