My workplace and I have reached a mutual agreement to terminate my contract due to ill health. So from the 1st November 2007 I am to be my own woman.
I think joining the union (if you’re not already a member) when you fall ill with CFS/ME is a very wise thing to do. If you can keep working but need some reasonable adjustments (under Disability Discrimination Act) then they can help support you with that. If you are unable to continue working then they can help with any problems that may arise between you and your employer. And ultimately they can help extract you from your contract in the most agreeable way possible.
When I first got ill and took a long absence (a few months) away from work my main aim was to get better and get back to work. Resume normal life.
I was determined I would not be someone whose life was wrecked by this illness. I would keep on working. I had plans once I was back to full hours to negotiate some changes in my work situation – doing one or two days a week from home for instance.
My Occupational Health advisor and I agreed a back to work plan where I would start by doing 4 hours a day. After two weeks it would rise to 5 hours a day. Then 6 hours a day and so forth until I was back to full hours. The timescale for this was about 6 weeks. I had wanted to start with 3 hours a day and build the hours more gradually – but the strong message from Occ Health was if I couldn’t do 4 hours a day then I wasn’t fit for my job anymore.
So I agreed the plan. It was (predictably) too much, too quickly. With my line managers agreement I stretched the return to work schedule. I upped my hours in fortnightly blocks instead of weekly. I also worked 2 of my 4 days a week from home. This meant I could stop in bed and work. I was protected from stress quite effectively and the work I was given was manageable and realistic.
I started my back to work plan in mid October 2006 and planned to be back to “normal” in the January.
Problem was – although I was teeth gritted, postive attitude, gutsy and determined to get myself back to normal I wasn’t noticing the glaring truths about my situation. When I did got into the office I was having my husband or brother give me a lift – because I was too tired to drive myself. When I got back from the office I was totally exhausted, unable to do anything and often needing to collapse/sleep. I was struggling – but determined.
By the time I was up to 6 hours a day the signs were not good. At 7 hours a day I felt wrecked, useless, weak, pathetic and a failure. My husband was the one who put the brakes on – quite literally. Dressed and in the car en route to the office he pulled into a side street and told me he didn’t think I should go in. I cried. He took me to the doctors and we all agreed I was utterly exhausted and very ill. It was mid December 2006.
I thought that being signed off for a week plus the Christmas break would be enough to get me back on my feet. My doctor gave me a leaflet about CFS and told me (very gently) if anything looked familar to come back and talk some more.
The reality of what I was facing sank in over the festive season. This wasn’t glandular fever. This wasn’t going to take a little while to be back to full speed like another GP had cheerfully suggested. This was serious.
I paid a big price for that continued strain of battling to stay at work. A price for increasing exertion week by week even though I was getting weaker and weaker. For the inevitable increase in workload, responsibility, deadlines and stress as my hours increased and it seemed enough time had passed for me to be able to start coping with it (what average person wouldn’t make such an assumption after all).
I was more ill than ever before. My summer of suffering was a breeze compared to my January 2007. I rested and made some huge adjustments in my lifestyle and after a month things were a little less acute. But truth is another 9 months on and my health has improved very little.
So the terminating of my contract is the obvious thing to do. There’s no-one who can estimate when I will be fit for that kind of work again or even if I will ever be fit. Besides the job was ultimately too stressful to be practical for me with CFS. Even if I felt a hundred times better and started a phased return the nature of the work and the environment would be potential triggers for relapse.
I wish that last summer I had seen a doctor who was up front about my prognosis. If I knew what feeling tired and taking a year to recover had really meant I am sure I would have approached things differently. I thought it might take a year to get back to 100% and I expected 6 months of that to be that last little 10%. it was in fact quite a different scenario. I wasn’t pushing myself hard, but I was pushing- when in fact I needed to listen to my body a lot more and push a lot less. I first felt exhausted and had clear blood tests back in late 2005. It took another year for someone to diagnose me. Inbetween, not knowing what I was dealing with, thinking that CFS label was for other people not me, I in fact became progressively more and more ill. I wasn’t able to do the right things because no-one was honest about the problem. I was in the dark and getting deeper into debility.
You can’t change the past. A million different things might have made a difference – or done nothing at all to alter the course I was on.
So, here I am nearly unemployed. But I no longer see that as a failure. I am, after all, ill. That chapter of my life is closing and a new one is beginning. I know work in the future will have to have a different feel and be better suited to MY needs and who I am.
I can’t promise I am always going to feel so positive and relaxed about it. But I’m ready to make the transition.