May 09, 2019
As part of our M.E. awareness month campaign, Action for M.E. handed over our social media pages to Ev - a person with M.E. She spent the day posting about her condition, experiences of working whilst having M.E. and talking about her life. You can read more about who Evan is in our recent news story.
08:47am - Hi, I'm Ev, I'll be taking over the Action for M.E. social pages. You might know me from @cornerstoneforthoughts where I write on chronic illness along with other life experiences.
Like you, I have M.E./CFS, I've lived with the illness for 2 years. I suffer with symptoms that you might suffer from such as; chronic fatigue, intolerances to certain food and alcohols, nerve pain & numbness as well as hot flushes. I'm in a fortunate position, where I can manage working a full time role but with a lot of flexibility, adjustments and outside of work management of the illness.
Today, i'm over in Belgium for work and I wanted to bring you along with me. Happy Following xo Ev xo
10:00am - I regularly travel over to Belgium for work and with the time difference & long days, I tend to feel even more tired. With this, I therefore use travel time as nap time.
10:46am - Working with when you have an illness like M.E./CFS isn't easy and something I have had to come to terms with; its about balance and flexibility. For me, during my diagnosis I worked in the City, with a 2 hour commute. This resulted in multiple regular setbacks. I now have had to bring my work closer to home to facilitate me ME. It isn't easy whether working full or part time; employers struggle to recognise or understand the illness.
11:04am - Since my diagnosis, I've had multiple setbacks, I've experienced discrimination & I have had to justify my pain & suffering.
"It’s the classic issue, that you return to work after being diagnosed with an illness like ME and everyone questions whether you were poorly in the first place. However, if you returned to work with your arm in a sling, nobody would bat an eyelid."
You can read my full blog about invisible illnesses here.
11:11am - I have experienced first hand discrimination with colleagues. Its not easy and until workplaces etc. are educated, we will need to fight.
11:14am - For me, I have always used my blog as a platform to educate and provide understanding for those unaware of the illness and its implications. It may be invisible but it comes with suffering nevertheless.
03:06pm - I was told in the beginning of my diagnosis that I had low self esteem which could be at the heart of the problem: outrageous. Only when I changed GPs was action taken.
03:10pm - To help support a 'normalish' life I take B12 supplements and injections along with D3 supplements. Are you on these too?
03:19pm - Do you have any questions? Send in your questions for Ev now.
What strategies to you use to support you to cope with working?
Pacing unfortunately has been & continues to be a God send. So, when I have lots of travel with work I will always have a quieter weekend work from home midweek. I hate to say it, but a coffee at 8:30am and a coke at 1:30pm also work well for giving me boosts.
What's your employer done to help you manage work with M.E./CFS?
My dentist would hate me saying that. My employer, I work my hospital visits around my diary & work. I also try to work from home regularly and schedule any city visits out of rush hour times to always get a seat!
That's great your able to work from home midweek... saves that bit of energy and time to recover or rest. Is your employer quite understanding and supportive?
They can be, I think, its a case of showing willing and showing that your illness isn't to be afraid of; its something to work around.