With Chronic Illness, Every Move Comes With a 'Cost'

Most days, I wake up with my body already in its “overdraft” — depleted of energy, pain being my first thought and feeling. Gosh, if I didn’t feel like this upon waking, I’d wonder if I was still dreaming…

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Today, I woke pretty much at the brim of my overdraft. I slept less last night — falling asleep was hard, pain from my unstable pelvis felt like somebody was drilling into my hip. Uncontrollable groaning ensued while attempting to drift off. When sleep came, at one point, I was rudely awoken by my pelvis slipping back into place. An indistinguishable pain that induces the reflex that wants me to be sick.

When morning comes, despite being so exhausted mentally and physically, it’s a relief to be able to get up, to not have to try and sleep — something that comes so naturally to so many people.

I assessed the damage once standing. Bearable, just. I had plans to meet a good friend with my girls (who are on their school holidays), so, despite being so close to my overdraft limit, I decided the cost of going out would be worth it.

We had such a wonderful morning: a bit of mini golf, a short walk in the sunshine, we ate hot chips and ketchup, then had a whippy ice cream. I enjoyed it with all of my senses. Truly in the moment, life felt good. I almost forgot how close I was to my overdraft limit.

Pain and injuries with hypermobile Ehlers-Danlos syndrome (hEDS) are often delayed, especially for me. It’s hard to switch off from the fact that the “cost” of living gradually adds up with every move I make.

Within a few hours, my shoulder felt out of place, and the pain in my pelvis almost made me sick. The cost of our lovely morning had caught up with me. Not only had I gone over my overdraft limit, I was now being charged interest for doing so.

The hardest part, is I “look so well!” whenever I bump into people. But I guess that’s because I normally have sense to get home before I hit the overdraft limit. On a many occasions I’ve gone over the limit while out, and the anxiety and panic that I may not make it home was too much. I try to avoid it if I can, but such is life. That is not always possible.

Now, I’m laying in my bed, full of medication, drinking an ice cold Diet Coke with my eldest daughter, doing word searches, listening to Ed Sheeran — staying in the moment. This is the “me” that people don’t see. I feel ashamed, embarrassed, broken.

It’s at times like this that I normally don’t cope. It feels so unfair sometimes, that every move I make comes with a delayed cost. But I’m slowly coming to the realization that I can’t change that.

Would I change things? Of course I would, in a heartbeat. I can’t change the fact that I live with hEDS, but I can try and change the mindset that goes along with it. Yes, my wonderful morning has cost me greatly, but I’d pay that cost over and over to have those experiences with my family and friends.

In writing this, I hope that on my bad days, I can hold onto the positive moments. And in recovering from the cost of those positive moments, be it for days, weeks, or even months, that all of “this” is worthwhile, even if I lose sight of it.