Working with a Chronic Illness (ME)

The Badgers Den
1

Before I start, I’m mostly ok, and I’m still working.

I feel that not enough people know about this disease, although it affects millions of people world-wide. A large percentage go undiagnosed because even the medical profession is largely ignorant about it. So here I go, spreading the word.

I was diagnosed with ME/CFS three years ago. It affects all aspects of my life. It’s a mitochondrial dysfunction. Basically it’s characterised by extremely low energy levels. There is no treatment and there is no cure. Also, it’s progressive, which means you get worse as time goes on.

I’m quickly exhausted and it takes days to recharge. Physical weakness, extreme sleepiness are symptoms but also brain fog, which is the killer for me. Not all the time, but some days I just can’t think straight. That means forgetting stuff but also you have no imagination, no creativity, no capacity to learn. Can’t think a problem through. Can’t get an idea.

The Immune system is just as much affected, so I have to be super careful about exposure to viruses etc.

Any physical activity - or mental activity - can make your symptoms a lot worse. Socialising or even digesting food can be exhausting. Resting is now a vital part of my day.

I work from home, part time. If I need to lie down for an hour I tell the boss. If I need a day that’s ok too. If I really need to work through it I tell them to double check my work, then I need to take a day. It works out ok for us. Because I work from home, I can cope. I couldn’t go out to work. At this point I’m pretty much housebound.

Having said all that, I remain cheerful. I’m still working, although I’m past retirement age.

This disease isn’t normally fatal. The biggest cause of death is suicide, and that’s because people lose hope.

I don’t do “woe is me”. There’s always hope until you give up. So I won’t give up. There will be a cure one day.

Dare I say it - I’m not after sympathy. I’m posting this in order further awareness of ME/CFS, and to show that it’s possible to carry on working with this disease. If you want to help, find an ME charity and donate. They fund the research to understand this disease, which today is a medical enigma. Nobody understands the causes let alone pathology of ME/CFS.

2

Wow, thanks for sharing. As your post suggests, I have never heard of this before, and I am sorry to hear that this is something you’re suffering with. It’s great to hear that your work is accommodating. Do you have a good support network (spouse, children, relatives, church, etc.)? If that’s too personal, feel free not to answer.

1 Like
3

Thanks, Steve_O. I have a partner who lives with me, otherwise it would be much more difficult. If I’m careful I can do light housework, but I couldn’t go shopping for food or anything like that.

4

Like Steve, I’m glad you shared that with us. It’s always nice to learn a bit more about those I know here, but not in person. I was also unfamiliar with this condition. I’ll need to look it up to learn more. All things considered, it sounds as though you’re in a good position to make the best of it, which is something to be thankful for.

1 Like