When I returned to work after the Christmas break, in January 2011, I didn't feel right. I couldn't put my finger on it. I carried on as usual, thinking maybe I just had a few too many late nights at Christmas.
Two weeks in, I went to Southampton at the weekend to see friends. One of them was off to Venice for a student exchange. I noticed my glands were up and knew I was going down with something. By Monday, my tonsils were feeling inflamed too, so I phoned in sick and went to the doctor, in case it was tonsillitis. My GP said it didn't look bad enough to be a bacterial infection, and that it looked like a virus that was doing the rounds. She said to take a couple of days off and then I'd be fine.
But I wasn't. I was good and took the time off, but a week later I found myself back in her office once again with the familiar fatigue having started to set in. We tried some antibiotics. We tried different antibiotics. Eventually she tested my blood again. Low vitamin D. Supplements. Still nothing. Cancer scare. That revealed that I'd had glandular fever again. An explanation for the tonsil swelling, and prolonged fatigue.
But by this time I'd been off work several months. The fatigue hadn't gone away like it had before. Other symptoms were starting to creep in. My legs often felt like jelly. Then they started giving way. My glands hadn't settled down. I began to notice that how much I did affected my symptoms. They got worse if I did too much, but I couldn't get a handle on what was too much. I couldn't understand my lack of energy. I began to get frustrated. Any improvement was destroyed because I thought I was getting better and started doing things again. Still I didn't get it.
Slowly I began noticing headaches, concentration problems and minor memory lapses. Random aches and pains, a couple of dizzy spells. And still the relentless, severe fatigue and need for sleep.
I nearly attempted a return to work, but before arrangements could be made, I caught a cold. I'd had another virus the month before. Infection after infection ensued, each one making me progressively more debilitated. After I'd had a cold, I would get out of breath just climbing the stairs. This went on for weeks. When improvement came at last, it was only small, and then another infection came anyway.
I slowly began to realise I might not be going back to work. I slowly began to realise I couldn't walk very far and needed a wheelchair. I slowly began to realise how much help I needed with stuff. I slowly began to realise I was disabled.
I had a big relapse in October 2011. I went very pale, struggled to climb the stairs again, got exhausted standing in the shower. I had to rest a lot, especially in the mornings when I struggled to function. The glands in my neck and chest were swollen and painful. My brain didn't work properly. My legs didn't work properly. My arms ached from cooking an evening meal. Months before, I had already given up most of the household tasks to my now-husband.
At last, I gave in. I stopped fighting it. I agreed not to go back to work. I applied for Employment and Support Allowance. The pressure was off, I relaxed and rested. I finished planning our wedding via email and the internet.
In the spring of 2012, I improved a little. Tentatively at first, but then it was clear I was a bit better. My cheeks had colour, I could walk a little bit further and sometimes I didn't need to rest in the afternoon. It wasn't good enough to go back to work, but I thought maybe I was getting better.
I knew getting married and moving house would take it out of me. By August 2012 I was worse again, but stable, and not as bad as I had been before. I was confident I could improve again, and planned to do a proofreading course with a view to working from home.
But as the dust settled, it was clear I was still struggling. I was constantly frustrated at how little I could do in a day. My to-do list kept getting longer. In September I got a virus, and at the beginning of October a winter relapse took me once again.