Eyes flicker, merging darkness with darkness. Entering a world of infinite possibilities you soften to the sound of your own heavy breathing. Chest rising, and falling, inflating your lungs with crisp, cold air. You feel your heart beat in your chest, hear it in your temples. It’s so quiet you can almost hear the blood flooding your veins. Your fingers begin to tingle as you re-position yourself and move them from underneath your head. Flexing each finger individually, smiling at the familiarity of your hand coming back to life. You wiggle your toes, stretching out fully before curving in on yourself, hugging your arms close to your chest for warmth. You exhale, counting sheep…1, 2, 3. You Inhale, role over, flex your toes, move your hair away from your eyes. You turn, inhale, exhale. Sleep is imminent, you wait patiently for it to engulf you entirely, send you into a world all your own, when your eyes suddenly dart open. A pain sears through you, landing in your back and sending your whole body rigid. Your breathing stops, your arms shoot to your stomach instinctively. You ride the tidal wave of pain, remembering the ritual you’d taught yourself. Count to 4, slowly and surely. 1, it radiates outward, circling your belly button, slithering and circling like a beast stalking its prey. 2, it darts inwards, as if wishing to remind you it can claim whichever part of you it wants. 3, it tightens around you, inside and out you feel yourself clench. Your breathing is sharp, your lungs failing to cope with the intensity. 4, it begins to ease off, your vice-like grip around your stomach loosens. You are catapulted back into reality, sleep a distant memory. A pain only lasting a few seconds, but the destruction is obvious. You can’t sleep, can you? Maybe you can. Surely this time you can. You flex your toes, roll over and feel your arm beginning to sleep, the familiar tingle darting up your arm. Your eyes close, you focus on your breathing. You roll over, you smile, you can feel the blood circling your head, reminding you everything is working. You breathe, in and then out, in and then out. You relax. Your body softens, you clutch yourself for warmth. You smile. Everything is okay, everything will be okay. You feel your eyes close and your mouth fall open, sleep is fast approaching. You turn, you stretch, you breathe.
This week has been an emotional roller coaster. I feel as though I have been catapulted back in to a world with daily pain, uncertainty and fear. I feel as though my mind has become accustomed to dealing with pain. I managed to conceal it for two years and it’s as though when I am sore, my way of coping with it is to work around it. For example; I had to go into work last week for a few hours, but because my stoma is slowly being suffocated again, I was in a lot of pain. Without even registering it, I wouldn’t eat anything until after work, simply because the pain of being hungry is much less than the pain of a blocked bowel. It wasn’t until I sat down at 3 o clock to eat something that I realised what I had done.
With that realisation came a wave of emotions. Although I knew my bowel wouldn’t be rupturing again, I was paralysed with the idea that something like that was going to happen. I felt as though the world was collapsing on me. why was this happening to me yet again!? what had I done to deserve this never-ending pain? I was really struggling this time, I knew things had to be done, but a part of me was just saying; “just stop eating, that will solve everything.” I survived for two years on water and the slightest amount of food that I could, why not do it again?
But I found myself calling the hospital to speak to a stoma nurse. Then I asked my mum to take me to a&e. I told my surgeon my predicament and he suggested two things: we either go in and cut your muscle again, or we bring forward your reversal. I was torn; do I want to put my body through a small operation to then wake up and know that I will still need a reversal in a few months? Or do I just go for it and book my reversal. After discussing with the doctors and surgeons we came to the conclusion that the reversal was the best idea. What was happening was because my intestine has been brought out through my stomach wall, the stomach muscles were viewing my stoma as an intruder and closing around it. Meaning food was struggling to pass through my bowel. This lead to painful stomach cramps and a very noisy stoma! I spent a few days in hospital, until my surgeon said he would prefer to do my surgery through election rather than as an emergency. So he booked me in for a MRI scan and told me we would book a date after we got the results from that. In the mean time, I needed a solution to stop the pain, which brings me to today. The surgeons have given me catheter tubes to put up my stoma and drain the content. It not very pleasant but it certainly helps with the pain. The thing is, I seem to be struggling, not physically, but mentally. I’m tired of the frequent trips to the hospital. I’m tired of the pain but mainly I’m tired about everything feeling so uncertain. You will have noticed that this post is filled with questions. I’m tired of my head continuously being bombarded with these questions. I’m knackered of the ‘what ifs’ and I’m struggling to take in the idea that a lot of other things could go wrong in the future. What if the reversal goes wrong? What if after the re-join my bowels split and leak? What if all the radiation I’ve had pumped into my veins after numerous scans causes me to get cancer? What if, what if, what if. I’m tired that I feel as though I can’t give my friends the attention they deserve. I’m tired of snapping at my family because I’m putting all my focus into thinking about my bowels. I’m tired, plain and simply medically exhausted.
However, there is a part of me that keeps reminding me of my motto: life’s too short. Far too short. If I were to be hit by a bus tomorrow, would I die feeling as though I had done everything I wanted to? The chances are, I probably wouldn’t have even reached half of the things I wanted to have done. It was this moment that I decided to whip out the iPad and write a blog.Nothing helps me more than documenting my feelings. I’ve taken the time to be tired and now it’s on to finding the solution. I have never been one to bask in my own misery, what’s the point? I think you all know my answer already: life is too, bloody, short. Make the most of what you can, enjoy what’s enjoyable and stick a catheter tube up what isn’t!
life’s too short, so love the ones you’ve got. Cause you might get run over, or you might get shot.