This week, a friend tagged me in a post. It said, ‘the worst feeling about having a chronic illness is the guilt.” It stopped me short, as I’ve avoided that label for so long, the chronic one.
I’ve always believed, somewhere, in the back of my mind, that one day, a hospital consultation would fix me. I’ve always thought that a simple operation or discovery would see me back to being my usual active (over active) self.
I never thought this would be it. If I’m honest, even as I write this, I still refuse for this to be it but I seem to be in the alternative, as everyone around me sees it for what it is.
I’ve lost count of the times I’ve shouted, “but everyone else does it” only to be shot down in flames and be told that I’m not everyone else. I’ve lost count of the many times my friends and family have told me to take it steady on a good day as they warn of the repercussions.
I try to fight them tooth and nail believing that tomorrow will be better, I’m just having a bad one, it’ll disappear with a good night’s sleep, everyone else can do it, so why can’t I?
I’ve a chronic illness that’s why. I still don’t want to admit it.
I can label a lot of my diseases but some are still hiding waiting for diagnosis and, yes, this does terrify me. I’m getting worse by the day and finding it difficult to function most mornings, I’m a burden and that worries me. What worries me more, is seeing how friends and family have accepted this as the norm as I don’t want to be this person. I don’t want to be half high on pain relief or a zombie because of the medication.
Life has become a series of trying to find the balance. Of hours whiled away lonely and alone while I wait for the pain relief to kick in. Of cancellations and non events as I realise I won’t be able to make it, of dashed dreams and hopes as I fall back on my promises. It wasn’t supposed to be like this.
On a good day I become quite high, naturally, and try to squish every activity into a single day. I want to see my friends, go on adventures, dance with the kids, paddle in the sea, eat scrummy food and watch the sunset. I want to laugh until my belly hurts and climb cliffs to sit on the top with sandwiches, I want water fights, kisses in the rain, heck, I even want sex.
It comes with a price though as I’ve found to my error, as one good day takes a week to recover.
I’m told to take it slower, don’t pack everything in. Know your limits, don’t go scootering. Don’t climb trees, don’t cycle, don’t dig the garden, don’t hoover, don’t mow the lawn, don’t drive far, don’t play horsey with the kids on my back, don’t pillow fight.
Would you? With one good day out of every fortnight would you take it slower, only to find you can’t do any of those things the following day?
As I sat eating lunch with my friends yesterday, my mind adrift with all the things on my bucket list, and very few days to complete them in, I watched a couple of about 80, and felt jealous.
They ambled off their cycles, to stop for a spot of salad, they looked so fit and healthy and right there and then, I wanted to be 80. I thought, just ten years of being fit enough to ride a bike would see me through. I’d follow every coastal path and walk the whole of the British Isles, and cycle to the moon and back in my pyjamas, but it’s not meant to be, as I’m 38 and must make the most of what I have. It’s more than some, and I’m grateful for that but the guilt. The guilt is eating away.
Over the past week, my family and I have had 5 discussions around the kitchen table about the pros and cons of me attending my uncle’s funeral. My family have tried, in the gentlest way possible to talk me out of a 600 mile trip to say goodbye to my Uncle Dennis. They’ve laid their concerns on the table, and for the first four meetings I sat, stony faced, resolute, my mind was not going to change.
Then I had a really bad day, and another, and another. I realised, if this were to happen on the motorway, I’d be toast and that bucket list would have no chance of being completed at all.
So now, I’m 90% sure I won’t be making the trip and that makes me feel claustrophobic. My Family all live so far away. If I can’t get to them on my own, they’re no longer within my reach. It’s like saying goodbye all over again as I’ve always known, should push come to shove I could hop in a car and go visit. Now that’s more unlikely, and I don’t like it one bit.
I have to hold onto the belief that a doctor is going to cure me, that one day soon, I’ll have the operation to end all operations and my hospital visits will be no more, my morphine will wash down the drain and my head will be clear and bright again. I have to have hope and I have to pretend, on a good day, that I am fit and well and chronic is not associated with myself.
