We continue with our ME Awareness Week Focus on Employment and Education with a guest blog from Ev Francis. Over the coming days we hope very much to begin publishing the many stories we have received as a result of our recent appeals, that we think will help identify the issues faced by people with M.E. in these environments.
In 2017 I graduated from University but was completely unaware that in just five months I’d be diagnosed with ME/CFS, meaning that my busy and active lifestyle would be completely altered.
I was always unlucky at the start of each academic year, as each year I would be struck down with a viral flu just as I was due to start lectures. Neither I, my family, or the university realised that I never made a full recovery.
I noticed at the beginning of my second year that I had developed an intolerance to gluten, wheat and barley. This happened at a time when finding gluten free foods in shops and restaurants was particularly difficult.
With such an intolerance, I found that I was incredibly tired all the time; so much so that I was often relying on sugar to help keep me awake during seminars and lectures. I’d be exhausted after lunch every day, especially after eating. I blamed the tiredness on hormones, gluten or just not getting enough sleep.
Unlike the working world, university was a place I could hide my symptoms; with an English degree, contact hours are far and few between, sometimes only six or eight hours a week. I was also able to listen to lectures online if I found it too tiring to attend.
Thankfully, all my academic study took place on one day, meaning the rest of the week I could recover alongside working part time in retail.
For me, University and M.E. was not as big a struggle as working a 9-to-5 job in the City. University was relaxed, and I lived close by, meaning I could hide my symptoms with a sugar overdose and later starts.
If I had known about my condition while I was at university, I’d have sought help from the university’s help team. My advice to those embarking on a university course with ME/CFS, or who are in the process of being tested is:
- Get Support: Most Universities have pastoral, medical and wellbeing help centres who should be on standby to support you whilst working for your degree and getting your health back to manageable state.
- Sort out your Timetable: I was lucky that at the start of each year my timetable was over one or two days. Looking back, this made my health issues much more manageable as I could juggle part time work, rest, play and University around my study days. Ask for help with this.
- Say NO: University is as much about the social scene as it is about the academic scene but, when you have M.E., the clubbing, the drinking and late nights can hit you harder than most. So, if you’re feeling a little worse for wear or you feel like a night out drinking will have an impact on your symptoms, take a step back and say no. Nights out at university are so regular that you’ll manage enough of them and the ones you miss won’t matter. At the end of the day, your health is more important than ‘pulling’!
The transition from part-time work to full-time city work really hit my health hard and, before long, I was feeling the effects.
I’ll put this into perspective; my part-time retail work was 10 minutes down the road; the hours were manageable, and breaks were 90 minutes. I was in a very relaxed department, so I could sit down.
My full-time role, however, involved two hours travelling each way and working 9am to 5pm. So, I got up at 5.45am and didn’t get home until 7.00pm.
On top of this, I would often stand for at least 45 minutes on the journey. I was then attempting to add in a 4-day gym schedule and a social life. No wonder I felt frazzled!
Unsurprisingly, my symptoms took a turn for the worse and I began to lose sensation in my hands and feet, causing trouble with my mobility.
My memory was weaker, I had trouble reading emails and often forgot what I was doing. I was thought to be incapable of doing my job, rather than my health being a major issue.
Eventually I made the decision to change my work life so that I was closer to home and this is making for a much nicer balance.
I believe that the working world is still very unaware of the symptoms caused by M.E. There is little understanding that being tired and having M.E are incredibly different; feeling little like you could do with another few minutes to wake up to feeling like you’ve never slept are very different.
From experience, many of my friends, family and work colleagues were unaware that the illness fluctuates and that some days are better than others. M.E is a long term, chronic illness. It is invisible and impacts on life as much as any other chronic illness.
This week, please wear blue and raise awareness of M.E.
Evan Kendall Francis
The ME Association
If you would like show your support for our vital work then please donate whatever you can afford to our ME Awareness Week Just Giving campaign – Go BLUE for ME.
Help us continue to make the UK a better place for people with M.E.