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…

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.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

emergency room staff wheeling a patient down a hallway on a gurney

Why Anxiety Is So Prevalent in the Chronic Illness Community

Stay with me on this one. It’s complicated, and there are so many layers. But if I simplify it too much then you will lose the complexity of the link between chronic illness and anxiety. In fact, it is less of a link and more of an enmeshment. These two like each other a lot and they [...]
woman standing next to wall showing brace on ankle, wearing black dress

Why I Love My Braces

This last week, I received a new ankle brace. Internally, I jumped up and down for joy. Externally, I posted joy on my computer because my ankle is sprained for the umpteeth time in my life. As a lifelong consumer of braces for various joints, this brace is the best I’ve ever had. It is [...]
man and woman in a field

To the Caregivers Who May Not Even Know They're Caregivers

For the people who comfort, listen and love. For those countless trips to the freezer and cupboard for the ice packs and Advil. For the rub downs in the middle of the night and always warming up the heating pad before I sit down. Dealing with chronic pain and injuries is an art. It’s an [...]
stressed woman leaning on weeping glass shower door

On a Bad Day With Ehlers-Danlos Syndrome

Today is a bad day — not just with pain but spiritually too. I force myself out of bed against every part of me screaming to stay put. The tears have already fallen multiple times today before the alarm has even gone off. I called out of work today… I work from home. I am [...]