Bit of backstory (4) - A turn for the worse

So I was cured, right?

Well, not really. That was summer 2001. I took around a month recovering enough to be able to go back to work. I reveled in the fact that I did actually feel quite a bit better. I was eating and what's more I was enjoying what I was eating. I put on a bit of weight and the daily walks into town were helping no end (although they weren't improving my bank balance - no-one told me that being off work costs you about twice as much as being in work).

It was only in the coming months that I realised that I hadn't made a full recovery. Mornings were still difficult. Plus, my energy levels weren't great. A working day would be followed by a massive slump in the evenings. My enthusiasm for life was waning.

One of the hardest things about chronic, progressive illnesses is that the deterioration creeps up on you. I was gradually weakening. I was anemic and frustratingly, the GP was treating me for the symptoms of this rather than looking for a cause. I began to withdraw from life and simply get by.

My pet cat, my loyal companion for all this time, disappeared between Halloween and Bonfire Night and I was so numb I barely mourned her.

This numbness continued through till December 2002. I was utterly, deeply exhausted. The heating was failing in my house and I'd lost a lot of weight (down to seven and a half stone, which even for me at 5'6" was very, very light). I would wash the dishes (after most of the food had been scraped off into the bin) and stand for minutes afterwards with my hands in the dishwater trying to get the cold from my bones. There was a feeling in my joints as if all the lubrication had gone and bone was grinding against bone. My backside was sore, with a pain like toothache that would throb in the cold. Whenever I walked into a room I would prop my bum on the radiator to try and get rid of the pain.

I muddled through Christmas with my parents, barely contributing. I told my friends in Chester (where I lived) that I was spending New Year with my parents and told my parents that I was spending it in Chester with my friends. Instead I drove back to Chester and lay on the sofa to watch a DVD on my own.

By the time I returned to work, the pain in my backside had increased and I booked myself in to see my GP. I saw him on Friday, 11th January and he judged that it looked like an abscess. He gave me antibiotics which he said might get rid of it but that if they didn't by Monday I was to see him. I phoned in sick and went home.

That weekend was horrendous. My weakened system reacted badly to the antibiotics. I couldn't always reach the toilet and there were dribbles of diarrhea from my bed to the toilet. I hardly cared. I phoned NHS Direct and they told me to persevere.

The Monday arrived and I phoned the doctor to explain the situation. Thankfully, without hesitation he booked me in to the Hospital there and then. A couple of my work colleagues collected me and took me there. I could tell by the looks on their faces that I looked exactly as I felt. Triage in A&E took seconds and I was wheeled up to the gastro ward.

After painful prods from junior doctors and - finally- an examination from the Consultant, I was scheduled for surgery. I spent a surreal night, lying in an overly warm hospital ward with my arse hanging out of my gown - embarrassingly facing the world but at least free of contact with covers or clothes. The surgery [1] was brief and uneventful, removing a mass the size of an orange from my emaciated backside.

Once I was well enough I went for a bath (one thing you can't get across to people who haven't had this kind of condition is the hallowed reverence you develop for finally getting yourself clean). After getting out I promptly fainted and then recovered enough to pull the emergency cord - the one and only time I've ever had to do this in hospital.

Not long later I was well enough to be discharged. My friends promptly made up a bed for me in my living room, cooked me shepherd's pie and left. Don't get me wrong, this wasn't any kind of abandonment - I simply couldn't bare the pitying looks and the feeling that I just wanted them to go so that I could just get on with things. Going to the bathroom was hideous. Painful and messy. My guts had not settled and this is not the kind of thing that you want to be going on with an open wound that goes right into the bum crease. This became terrifying when I noticed a mass hanging out of the wound - difficult to distinguish between poo and packing. NHS Direct reassured me that this was probably just packing and I showered and slumped into bed.

It was obvious I couldn't cope and I decided, at the age of 28 - after pretty much leaving home at 18 - that I needed my parents to look after me. I rang and they arrived the next day to take me home...

[1] Surgery for abscesses is very minor but has to be conducted in a very specific kind of way. The human body abhors a vacuum so the wound has to be left open to heal from the inside out - otherwise you end up with a hollowed that is covered over the surface with flesh, not good particularly as it is prone to infection. The wound is then packed with that weird kind of seaweed derivative and gauss to keep it from knitting together incorrectly.