I’ve written before how life stopped on Christmas Day 2015. It was in an instant or so it felt. When I look back for the ‘moment’, that’s it. It doesn’t matter about the months prior when I was so obviously, yet not obviously, coming out of remission. Christmas Day it was there in all its hideous, bloody, painful, despairing glory. IBD called my name again and this time it was yelling!
I have often thought that the day of surgery must have been the polar opposite moment, when all that was gone. Yes it was a massive milestone and one that ultimately saved my life but it actually wasn’t the moment. My turning point was the day the sun came out, which I can tell you was 15 March 2017, almost 5 months to the day after I had surgery.
I’m pretty sure the winter months following surgery in October 2016 didn’t help and I was feeling very down. Whilst there was no doubt I was immediately so much better after surgery, it hadn’t given me the (somewhat unrealistic) immediate lease of life that I’d hoped for. Yes, I had some quick and successive recovery milestones over the first couple of months and my surgeon and nursing team told me I was doing brilliantly and was well ahead of the game. But then I plateaued and I became stuck, physically and emotionally. I think perhaps once I’d hit most of the initial rush of physical milestones my heart had a chance to react and it was having its say.
The UK had literally been under cloud for months and so had I. Not aided by a collection of ailments that were causing me increasing anxiety. In fact I eventually started to believe my body had given up, it had all been too much. I had a doctors appointment to which I was taking my list of issues and was feeling very unenthusiastic and deflated.
On that morning (15 March), the sun came out. Quite literally it was like someone had turned the lights on and everyone was suddenly more upbeat, including me. I came out of my cave with a sense of optimism and all those issues seemed smaller, manageable. Isn’t the power of sunshine quite something?! I went in to see my doctor and showed her positive me. I said that I was feeling so much better minus my toxic colon and would be better still if we could just sort out these other nagging problems. I came away with a prescription and a referral or two and I felt good. In my mind looking back that day was a turning point and the day I realised I did indeed have my life back.
Unfortunately that feeling of being uplifted was soon upturned by what I’ll call a blip. I was sinking again and mentally I wasn’t sure I had the fight to go another round. For a while I’m ashamed to say I did indeed start to give up. I was allowing my body to shut down, slowly surrendering. To what I’m not sure but it wasn’t the full life I had planned.
I was a jigsaw. Different medical people were being assigned to deal with different parts of my body but there was no one with a holistic view. My physical health felt like a game of pin the tail on the donkey. Who cared about the whole me? Who in the world had any idea how I was feeling physically and mentally? I was reaching out but who to? The system doesn’t immediately lend itself to the whole you. Just individual body parts. I felt like a disjointed collection of parts that had been thrown up in the air and landed in a jumble with no one putting it all back together again. I reached another point of desperation and lost myself for a bit there.
Thankfully I didn’t lose myself so much I wasn’t able to eventually realise that self pity wasn’t going to get me anywhere. You see, despite that momentary giving up, at heart I have the strongest desire to live. Not just exist, to live. To love, to enjoy the world we live in and maybe, just maybe, to make a difference.
I made another appointment to see my Doc and naturally I had a list. I actually found the writing of it helped greatly even before I went. In doing so I realised many of the things on that list, that were the root of my growing anxiety, were already being managed. There were two things that weren’t and what felt the biggest of them was my mental health. As well as making an appointment to see my doctor I also reached out to a mate for support asking him to come over after my doctors appointment. This is hugely out of character (something to rectify) and was an indication of how I was feeling. I was in new territory and it was frightening. I had fought so long only to find myself overwhelmed at this junction.
My doctor was brilliant. She sat through a good 20 minutes of snot and blubbering with the occasional coherent word whilst I waved my list at her. I came away with a plan and this time some pills to help with my mood and state of mind. That was an emotional day of rare, free flowing tears. I think perhaps I was finally able to admit that I needed help after 18 months battling it out.
I learnt a couple of things that day. It’s ok to ask for help, it’s not weak to do so. In fact quite the opposite. Also, to be resourceful and look to the people who might just be willing and able to get me off the spot or who can just give me a bloody big hug and tell me everything will be ok. Even the most independent of us need to hear that once in a while!
I’m fortunate to have a great doctor and fabulous family and friends. I got support from my doc and a plan of action. That’s what I needed ultimately. It put me back in the driving seat and gave me direction. Once again I felt myself returning to optimism.
The sun was out (literally and metaphorically), I had a plan of attack and I felt empowered. I made some immediate changes, primarily to my outlook, some of my relationships and my approach to work. These were all things that had been dragging me under. It’s amazing what change can be made simply by altering your own perspective. You cannot control the attitude and behaviour of others but you can control your own. Perhaps the single most empowering lesson of the moment.
Now, the pills. The doc had said I might feel worse before I felt better and she wasn’t kidding. I felt horrible, like I’d had a massive dose of caffeine, hyper and doubly anxious. This wasn’t good and I wasn’t sure I was prepared to stick it out.
At the same time I decided to buy myself a push bike. A visit with one of my best pals to a bike shop later and I was awaiting the delivery of my new bike. The bike was a birthday present to myself and much to my excitement it arrived in time and I went out for my first ride.
It was at this point I decided I didn’t need the pills, there was another route out of this for me. The bike is my medicine. Exercise, fresh air, exploring and being out with others is brilliantly therapeutic not to mention restorative. I was especially thrilled to find my fitness levels haven’t dropped as much as I expected 💪!
Now, I’m actually starting to feel the new sense of life that I hoped surgery would give me. I can feel my body adjusting and accepting the amputation of my colon and welcoming my life saving ileostomy. I am proud to be who I am, have zero shame about having an ostomy and am excited for the life I now know I have ahead of me.
Finally, after many months of fighting uphill and one major surgery I see and love myself just the way I am. The pivotal turning point for me truly was the day the sun came out ☀️