So I have a long term condition I was diagnosed with at 18 called ‘familial visceral neuropathy’. The main problem I always had throughout my late teens and 20s was pain. I had years and years of horrific stomach pains, on and off for the best part of 10 years. I tried everything to reduce the pain and would always try to still live my life and do the things I wanted to do, trying to find ways to deal with it. Sometimes successfully and other times not. Sometimes though I had to miss things because the pain was too excruciating. There was so many hospital admissions during this time..thinking about it now, it’s hard to believe.
Coming towards my late 20s , early summer 2018, the pain just got worse to the point where I couldn’t function, I blacked out a few times, kept going dizzy and felt faint. Anything I ate was just going through me like water and I lost so much weight. The pain was different, a lot worse. But I guess I thought it was just a flare up.
Due to being away from home attempting to take some exams although failing due to being so ill, I didn’t get to a&e straight away. When I eventually got home, that night was the longest night ever. I got no sleep and I knew something was really wrong. By the time morning came round, I remember just passing out in the bathroom and my parents called an ambulance. The next thing I knew I was in a hospital room on a ward. The pain was so severe, I was so scared and upset.
They sent me for multiple X-rays but only when they finally scanned me did they find I had sepsis. Panic erupted and the doctor said I would need an emergency operation straight away. I had a 50/50 chance of survival and hearing those words frightened me to my core, but I decided to go ahead with the surgery because I didn’t really have much choice. If I didn’t go ahead with it, I would have died and if I didn’t die then I really wasn’t going to have any quality of life.
The last thing I remember vaguely was being on the ward, then I woke up in the ICU. I had been in a coma for 5 days, had so many different tubes and was hooked up to lots of machines. I had a tracheostomy and I was on a ventilator. I remember just hallucinating so much, seeing things that weren’t there and everything just being a blur. (Sepsis and Hallucinations) I was in horrendous pain because of the bowel surgery and I was told I had a stoma but I didn’t even really know what that was at the time. I couldn’t see it as I couldn’t move.
Eventually after a few complications such as pneumonia, I slowly and luckily started getting better. But I lost my voice for a few weeks when the ventilator and tracheostomy were removed and I was left with quadriparesis, a critical illness neuropathy meaning I was temporarily paralysed due to a disease of the peripheral nerves.
My recovery didn’t stop there, I was in hospital for 18 months which led to a further bowel surgery as they found diverticulitis was causing it.. I got sepsis a further two times. Now I am on a long term rehabilitation journey which has become part of my everyday life.
I am focused on my recovery; yes I beat sepsis and I am a survivor but I refuse to let the after effects of this traumatic ordeal win. I’m certain that if I’d have got scanned sooner and diagnosed correctly within plenty of time I would not have got the sepsis. If you spot signs, don’t wait, get to the hospital straight away. That’s the difference between life or death. I was lucky.