A Chronic Illness Is Like A Permanently Broken Arm

If you broke your arm you would go to the hospital. They would reset it, put your arm in a cast and send you home to heal.

What if they didn’t?

What if they told you there was nothing they could do, that you should go away and try not to use it too much? What would you do?

Now swap the broken arm for a condition that leaves you in terrible pain, with fatigue so bad you can’t work, socialise, walk or even get out of bed? That’s what happens with a chronic illness. I’ve been ill with ME/CFS for 26 years, bed bound for 6 of those, housebound for 14. So my metaphorical arm has been broken for a very long time.

At first all I could do was focus on the pain, the fatigue, how bad I felt, how unfair it was that everyone else my age (10 years old) was happy, healthy and “normal”. Over time I became very active in the ME community, setting up a local friendship network, organising meet ups, fundraising and doing interviews in the media to try to increase awareness.

I used the experience of my “broken arm” to help others and it felt great to see something positive come out of a condition that was incredibly hard to live with.

Somewhere along the way I stopped remembering what it was like to be healthy, to be able to do whatever I wanted, whenever I wanted. I started to adapt. I compensated for my “broken arm”. I learnt what I could and couldn’t do.

• I can’t go out every day or more than a couple of times a week. Sometimes not even that.
• I can only go out for an hour or two at a time.
• I have to use a wheelchair.
• I have to sleep every afternoon for 2 - 3 hours, so everything has to be planned around that.
• I have a certain amount of concentration every day and once it’s gone, it’s gone. That limit has made writing my debut novel very challenging. It’s made me aware again of my “broken arm” as I try to keep up with other able bodied people.

My life has became normal for me, I guess it had to for me to be able to keep going.

The only time I notice how different my life, my health, my energy levels are, is when I compare myself to others. It doesn’t help me but it can be hard not to. Especially when you’re making plans/working with “healthy” people. It makes it harder to cope, harder to keep going. The emotional pain gets so much worse.

Don’t get me wrong, I have the most amazing friends and family, and I’ve been blessed to get a really understanding agent, editor and publisher who have asked me what I needed and supported me when I’ve told them (that was hard to do, but that’s a whole other post).

I’ve had people in my life who haven’t understood but time has taught me the only option is to let them go. (Again, another post). My life is better without them in it.

My metaphorical arm is still broken, I’m still struggling with it, I try to ignore it a lot of the time and keep on living, but my ME is still there. All the time. It’s part of every decision I make.

• Can I go out?
• Do I need to rest?
• If I do this activity will it cause my symptoms to flare up?
• How long will the flare up last?
• Will it trigger a longer relapse?
• Can I risk it?
• Is it worth it?

It’s checks and balances, always weighing up each decision in the bigger scheme of things and that’s exhausting.

But it’s necessary.

It’s called pacing.

I didn’t do it for the first six years of my illness and then I ended up being bed bound, so I’ve learnt my lesson. The Very Hard Way!

My life at the moment is better than I thought possible, my novel The Choice is coming out on 26th December, I have great people around me, a wonderful home and a lot of joy.

It’s also not the life I imagined for myself.

It’s limited, restricted in a way that anyone who hasn’t had a chronic illness can truly understand.

I’m writing this post because today is ME Awareness Day. I often feel the desire to let dates like this slide by, to ignore them because I don’t want to mark the passage of my illness. Another year gone. My illness is ongoing, there’s no treatment for ME, no cure and the hope of that in truth that feels like a very, very long way away.

Until then I have to find a way to live that doesn’t break me, that distracts me from the pain of my “broken arm” so I can find joy and peace. I focus on the good, keep busy when I can, use my imagination to escape into other worlds, rest lots and listen to my body.

It’s not a perfect solution, but it’s the best way I’ve found.

If you have a chronic illness, how do you live with it? What helps you? I’d love to know. Leave me a comment.