“It’s a shame. It’s awful being a grown up. But the carousel never stops turning. You can’t get off.”
Hands up, who else feels like this?
I definitely feel this a lot of late. I thought it was just a chronic illness problem; that my life was beginning to be more and more dictated by my illness more than the other way around. With chronic illness, you feel like a juggler – always keeping things up in the air, combining all your skills to keep things going, on and on. Or like a plate spinner – keeping those plates going, adding another one, not letting one slip.
But it feels like, at some point, this should slow down? Should it? How?
I’ve spent alot of my recent time, thinking about pain. Thinking about why this has come around again and just how willing I’ve been to accept it and it’s become normal. However, chronic pain shouldn’t be the norm, it should be a signal that something is wrong and needs attention. So why is there no attention being brought towards it? Why do I feel like I am just saying the same thing, time and time again, and no-one is doing anything to help me? Are they even listening? Do they hear me? Am I going insane? Is it the pain, controlling my mental status? Or am I actually making pain up?
I knew my ostomy was not a cure for my Crohn’s Disease. I knew that from Day One; when I signed that consent, I knew that it was optimistic to think my health wouldn’t or couldn’t go tits up again. I hoped it wouldn’t for a very long time and I went through a blissful year post op before my disease did rear its ugly head again. So we got things sorted, I decompressed and attacked life with gusto once more. But, since then, it’s been niggly things that have grated on me. Played on my mind, pierced through my tough shell.
I started juggling more and more. I took the things that I experienced as just “another one of those things” something I was expected to just live with. To grin and bear it all. But all the while, it started adding up and putting pressure on me. I began to wonder why I thought my shit bag was my saviour when really, I would give anything to have a normal digestive system – one without a bag attached to my belly. I would give anything to have a functioning arsehole and an ordinary gut. I began hating the fact that I was somewhat dictated by my stoma. I forgot all that it gave me and I resented it.
I’ve felt this on and off for months; it comes without warning, buries itself deep within me and I find myself surprised by the hate that I feel for the thing that improved my quality of life. I know my bag saved me because I was very unwell but I also wish it hadn’t come to that. I hate that this is what I’ve been left with, to deal with.
It feels unfair and unjust. But what exactly in life is fair and just?
This feeling is revolving and it slaps me in the face several times a week. I’m not sure if this is healthy or not. Not sure if it’s going to pass for good or I need to deal with it. I’ve numbed myself with painkillers because the pain I’m in daily is getting really stupid. I sometimes look forward to the drowsiness and spaced out feeling that my pain killers give me. I don’t depend on them and I rarely want to take more than I should but I do enjoy the way I can just drift off for a while. It’s a break.
I can’t escape my body but I can escape my mind, even if it’s for a minute or so.
Don’t get me wrong; I know I’ve got keep on keeping on, that I need to chase and follow things up I know will help in the long run. But sometimes, I’d like to just not. To not need to chase my medical team or not have to change my bag or attend appointments. But missing one of those things, delaying it; it will only hurt me. And I want to be a good patient, I want to show compliance but I am fed up. Not in an angry way, not in any way that really feels like being fed up, I am just exhausted from having to be a patient all the time.
Chronic. That’s the clue.
Would be nice to slow the carousel though, just for a while eh?