My CV is blank from 2010 onwards. I’ve had opportunities arise that should have slotted in nicely around my health, but still they were out of reach.
Both my husband and my parents could find work for me within their businesses. Paperwork. Emails. Filing. Phone calls. To test the water a few years ago, my husband asked me to laminate 20 A4 pieces of paper and put them in a folder. It took me 6 months to do that around my health and the things that I must do. Eat, sleep, rest, shower…
I’d worked since I was 16 waitressing, in retail, nannying, and then within the family business. When I graduated and started applying for jobs, any interviews I got had to be cancelled because I got so ill so fast.
I am fortunate enough that if I should ever be well enough to work, I could likely take over some of the admin for my husband’s business. But I can’t see it happening.
I’m not sure why this is at the forefront of my mind at the moment. It’s been so long. The pain of having to be replaced within the family business and in my beloved job with children has lessened to a numbness that only appears every now and then.
But recently I’ve been thinking about how any kind of work is still a far-fetched pipe dream.
Please don’t tell me to never give up hope, or similar. The restrictions my M.E places upon me can never accurately be expressed online, so you really don’t know. I have suggestions from people about how I could surely sit at a desk and type, or answer phones. It can be soul destroying having to explain why that work is still not possible for me.
I feel for anyone who is just about ‘well’ enough to keep working who’s had to push their bodies to put food on the table. And anyone who has been deemed not quite sick enough to receive the financial support from the government that they need. My heart goes out to anyone who had to keep working at the detriment of their health. I never faced that; my onset was different from many people. It was so fast and so severe (and I wasn’t yet in full-time employment) that I never faced that.
A lot of the representation we see online of people with chronic illness is from people who work in some capacity. So I’m just here to represent myself again, as somehow who doesn’t fit in that box.
M.E. myself and I 
Hi Anna: I’ve had severe M.E., FM & POTS for 28 years and have been mostly homebound, so I know exactly where you’re coming from. It’s hard for us to find friendships, except on-line, because everyone else is working. I’ve decided to start a blog to encourage others with chronic illness and call it Weak, Wacky & Weary, so please check it out. If you ever want to email me, please feel free to do so. I’ll pray for healing & strength for you and me. 🙂
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Hello Tammi. Lovely to hear from you. I will be sure to check out your blog when I can, thank you. I’ve saved your email address but removed it from the comments as it was available for anyone to use
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Hi Anna. This was a timely and thought provoking post for me to read. I’m unfortunately at a point where I’m likely to need to take I’ll health retirement, in my 40s. I know exactly what you mean about being able to sit at a desk. My employer has been amazing in finding me a different post so that I could work from home permanently (and this was pre-Covid), and given me lighter, no-time-limit tasks to do. But I’ve struggled with even that. Just a couple of hours at the desk results in sever symptoms and I’m straight to bed after. It’s just not sustainable.
Maybe one day in the future I’ll recover enough to a point to look for something else again.
But right now we (with CFS/ME) know our bodies (and it is different for everyone), need to look after ourselves.
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