In January this year I had sepsis and it was the most terrifying experience of my life. It wasn’t the first time I’ve had it but it was the worst. As people with Fowler’s Syndrome are at higher risk of infections due to catheters, it follows that we are also at higher risk of developing sepsis. I’m really fortunate that because I was already in hospital at the time, it was caught early because things could have been much worse.

On New Years Eve I started to feel incredibly unwell. At first I thought it might just be the start of a migraine because I’m often sick and more exhausted than normal when I feel one coming on. But when the nurse in my bay came to do my observations I could tell something was seriously wrong. She immediately went to call a doctor and within 5 minutes my bed was surrounded.

My blood pressure had absolutely tanked (my notes, which I later read, said that it was 61/30), my temperature was 41°c and despite being in bed my heart rate was 149bpm. My score on the National Early Warning Signs system was 12. They took bloods straight away, including blood cultures, and put me on continuous fluids. And when they looked at what my lactate level was they knew that they were probably dealing with septic shock. A normal blood lactate level is less than 2.0mmol/L (some sources say that it’s less than 1.0mmol/L) and mine had jumped to 23. My entire body felt like it was on fire and I was beginning to feel quite disorientated.

Whilst they waited for my blood cultures to come back I was put on 3 different IV antibiotics until they knew what one was most appropriate. The critical care outreach team came to see me and discussions were had about whether or not I needed to be moved to intensive care. I wasn’t tolerating my feed at all so it had to be stopped for a few days, and when I woke up on New Years Day, I had the worst headache I’ve ever experienced. If I thought the headache that was starting the day before was bad, it was nothing in comparison to this.

I genuinely felt like my head was going to explode. I couldn’t move at all – I couldn’t sit up, turn from side to side, and the bright hospital lights just made everything worse. This made the medics suspect that I might have meningitis, but once my blood cultures came back, they realised that it was ‘just’ being in septic shock. I’m pretty glad that I didn’t have to have a lumbar puncture – I was hours away from that being carried out.

The continuous IV fluids were carried on until my blood pressure had stabilised a little – it took 4 days before it was normal enough that I was allowed to stand up and walk to the toilet (that was about 5 steps in front of my bed), and the same before my temperature dropped below 40°C. The critical care outreach team came to see me 4-6 times a day whilst my NEWS was still so high.

I don’t think I’ve ever felt so unwell in my life. All I asked the doctors for the first few days was ‘am I going to die?’ because I really did feel like that was the likely outcome. And now, being a science nerd who likes to read research papers for fun, it’s made things even clearer in terms of how unwell I was. In all honesty, the severity of my symptoms was probably also, in part, due to malnutrition and having experienced refeeding syndrome the week prior to going into septic shock. My body was struggling a lot.

It took a good 4 weeks before I started to feel semi-human again (although I still wasn’t at my baseline) and what did my body reward me with? Sepsis take two. I wasn’t quite as unwell the second time around, which I’m very grateful for, but it’s still taken it out of me. I’m still not back at baseline, even 6 months later, and I’m anticipating a long road ahead of me, but I know I’m incredibly lucky to be in the position I am, because things could have been very different.

All my love,

Anna x