Work and me

Having a chronic condition undoubtedly impacts on your ability to work. Some people with M.E. are unable to work at all, others can manage to work a few hours a week.  Or, like myself, some can still work full-time. I guess I am lucky in the sense that I have M.E. and I am working a full week. However, this doesn’t come without its problems. Working is far from easy.

One of the reasons that I am able to work full-time is due to the working arrangements of my job. I am able to work from home several days a week and to some extent the hours are flexible. I can start a bit later or finish a bit earlier if I make up my hours elsewhere and still deliver. I also spend a lot of time working alone which helps as I find being around people really tiring. If it wasn’t for these working arrangements I would not be able to work full-time. That said, I still find things a massive struggle.

I try and pace my work in line with my condition. If there’s a day I’m suffering more then I will try and do easier tasks that day and save more complex ones for my better days, where possible. I try and spread out meetings and days I spend in the office to give me time to recover from potential triggers which worsen my condition. But, as with any job or workplace, unexpected deadlines and pressures occur and that’s when I find things difficult. Back to back meetings, working lunches, breakfast meetings, long journeys and training days are all some of my workplace nightmares.

I spent several years suffering in silence and didn’t tell anyone at work about my condition. I’d battled on with dinners after work, early starts or back to back meetings. Partly because I didn’t have a diagnosis I felt I couldn’t withdraw from commitments as my only explanation for this would be that I was ‘tired’. Not exactly professional. Getting my diagnosis did help and I then began to explain how I felt. It gave me more confidence to put my health first and helped to explain if I could not perform to the best of my ability.

Nevertheless, I am still really struggling to work full-time at the moment. Because I am contractually obliged I feel that I have to give any energy I have got to work. This leaves me in bed straight after dinner most evenings and wiped out at weekends. Many evenings I can barely manage a basic conversation. Whilst I can just about muddle through the working day with some adjustments I don’t really have any energy left to enjoy my time after work properly. I have to rest so I am ready to go again the next day.

Being a conscientious person makes things all the more tricky as I always want to do my best and want people to admire and respect me. But, when you drag yourself to work feeling terribly unwell, whilst putting on a brave face, it’s hard to perform to the best of your ability and there’s always a niggling feeling that people think you’re inadequate. Invisible illness plays its part in this. I look fine at work so how could an illness be affecting my performance?

I have periods that are better than others. So, I don’t yet want to make a decision to reduce my hours or leave my job. I have worked hard to get to where I have and I don’t want my illness to take that away from me. Looking for an alternative job is also problematic. I need something that has flexible hours and the ability to work from home several days a week. Such jobs are few and far between.

I am mindful that I don’t have the quality of life I want at the moment, largely due to working full-time and the nature of my job not being compatible with my condition. I also feel that it is detrimental to my recovery and is causing me setbacks. At present it’s not really sustainable. I’ve articulated this to my employer and they are trying to do what they can to help by providing me with additional support, but they can’t take away my condition.

I’m hoping that my new elimination diet will improve my health to the extent where I can manage my condition more effectively and feel well enough to work full-time. If not then I will reassess things in a few months. Whilst I want to be committed to the career I’ve worked hard to achieve for many years, I may have to accept that I am no longer well enough to do this in the future. My health should be my priority. After all, we work to live not live to work.