Becoming Chronically Ill/Disabled

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.

Becoming a Social Worker

In 2002, or thereabouts, I decided I wanted to be a social worker. I'd always wanted to work with children, but also wanted to go to university, as I enjoyed learning. I did one of those silly computer quizzes they make you do at school, to find out what career you would be suited to. There were lots on my list, and social work was one of them. There was also a big advertising campaign going on at the time to try and encourage people into social work. The strapline was 'Social Work: It's about people. It's that simple, and that complicated.' I thought it sounded fascinating.

I did my A Levels and a gap year working as a care assistant with people with learning disabilities. I had to delay the start of my job because I was unwell. I had a fever for a couple of days and then just felt really tired all the time. I had blood tests done- nothing. I asked the doctor what was wrong with me. He replied, 'post-viral fatigue syndrome.' He advised me not to start my job till I felt better, and that might not be for a few weeks. I took his advice and when I felt better a couple of weeks later, I started.

I went into that job completely naïve and unprepared, but I left with burning passion to make a difference to the lives of people with learning disabilities. During the year I had 2 months off with glandular fever, but I recovered well.

I had an amazing time at university, (cliché alert) growing as a person and developing a sense of professional identity. I graduated with a 2:1 in July 2008. A week before my graduation I had been offered my ideal job as a social worker in a local authority learning disability team. It was the first job I was interviewed for and the only one I wanted. I accepted straightaway.

I travelled Europe with my now-husband during that summer. When we came back, I went down with a dizzy virus. I took to my bed, then felt better after a couple of days, so I decided to do some manic cleaning of our new house. The next day, I was so exhausted I could barely think. I alternately thought, 'Food' and 'sleep'. The fatigue stuck around for a few weeks. I had to delay starting this job too. I had more blood tests. Nothing. It went away and I started my job. I thought no more of it.

For the next two years, I was more or less fine. Work was stressful at times, and I feared constantly that I wasn't a very good social worker, despite everyone telling me I was. In 2010 I didn't plan my holidays very well, and ended up working a long stretch over the summer without much time off. I also had at least 2 stressful cases, one of which involved daily phone calls due to the precarious situation. The other included a day in court (which is rare when you work with adults).

I could feel myself getting run-down, and on the advice of a locum GP, took a course of multivitamins with ginkgo. It helped a bit, but I went down with a cold/fever in September anyway. I took 2 days off sick and went back to work. My colleagues told me I looked pale and I struggled through the day. I went to my GP the next day, and was told to take the rest of the week off. I ended up taking the rest of the month off.

I went back feeling a little tired still, but this soon improved and I felt full of energy. My now- mother-in-law said she'd never seen me looking so well. I threw myself into my work, beavering away to catch up on the piles of paperwork and get some cases closed. I did well, and finally felt like I was getting somewhere. I was beginning to claw back some confidence as I felt like I finally knew what I was doing. I was looking forward to taking on some new cases with fresh challenges.

I was feeling tired by Christmas but thought that was normal. I was going to have some time off, and ended up having a lovely Christmas.