The blurriest year ever, it feels.
It’s been a oddly quick year since Day One, to be honest. What can be taken from 2019 is that time definitely feels faster as I get older and wiser.
I have spent this year battling myself. Both physically and mentally. I became more in tune with my own being as well as the responses my IBD throws at me. I’ve felt more in control as a consequence.
As for goals, I set myself the following:
As I look back on them now, I instantly see the first two as failures. How can you be consistent at work, if you have half of the year off due to surgery and mental health but then leave? How can you be fitter and stronger if you had surgery and very low mood for alot of the year?
But the positives from these goals are that when I was working, I was consistent. I was strong enough – mentally and physically – to recover from surgery and a subsequent second day surgery. I’ve had alot of procedures and tests done this year and they all take a part of strength away. I am still here at the end of 2019 supporting myself very well considering everything that’s happened.
My writing has been goal orientated and suffered abit while under the sleepy blanket of my depression but I focused a heck of alot of time on myself and therapy has been my guiding light in all that.
So, what have been the highlights of 2019?
- Proctectomy surgery – being bum free is wonderful
- Becoming a CCUK Research Champion
- Connecting better with my parents
- Getting Newton – he has been a huge help with my health
- Surviving another year of ill health
- Committing myself to THERAPY after a long time of struggle
- Speaking in public to HCPs about my chronic illness and writing
- Not loosing my marbles.
- Becoming ‘Auntie Lou’ to four tiny humans.
- Worked on several IBD projects and services.
At times, there were painful and bleak periods during my recovery, which seemed to take forever. As much as anyone can be prepared and have everything in place for major surgery, sometimes things just go wrong. I acted well throughout the misadventures with my wound and medications; so I am grateful in the end for the surgery being as success. I made a good choice to get it done when I did as well. I don’t like to think I planned it for the best time, but there was certaintly some aspects of fate in there.
I really don’t know what I expected of this year, so my perception of what has happened is abit perplexing. I suppose some of that feeling is down to the fact that what has happened this year, has happened to me before and I know how to sort of deal with it. I’ve had surgery before, I’ve had procedures before, I’ve had the medications stop and fail before. 2019 just feels like a 50% repeat of 2016 and 2017 muddled together. But my ability to grow through what I’ve done through has become more apparent.
I’ve built on the key achievements I had in 2018:
“I’ve definitely seen the highs and lows of being a patient this year… I’ve been an outpatient countless times more this year. All in aid of being better and well outside of the hospital. For me, this has been key to keeping myself on a level pegging. I’ve met new specialists this year, had more testing done, visited my GP for more issues because I’ve learnt how to get the best out of the system.”
I continue to see most of the hospital as an outpatient – hallelujah – but even as we draw this year to a close, it’s been a while – in my world – since I’ve been inside there. It’s not been an easy transition and it is still coming along, but I am hopeful that I will see less and less of it as the month go on. I am not certain but hopeful, remember that; it could all change, as we know it often does with IBD!
“And whilst my ostomy has been the saving grace for a while, it also comes with challenges. This year I’ve found solace in a solid routine, learning more about my own ostomy and in generally too. I’ve found some comfort in knowing my own body well, and appreciating what is now does differently as being chuffing amazing. I think this has been a good brick into building the wall of acceptance for my ostomy and my new life. And whilst it doesn’t feel ‘new’ anymore, it is always new; the path to acceptance. It’s not just done with one day, it’s evolving.”
My proctectomy changed my stoma, for sure. While my surgeon did not touch it, it definitely reacted to being operated on. This has been good though, I know how to cope and deal with changes in that area much better now. Moving out of that sphere for my employment has also made my own stoma easier to manage and contemplate. It still sometimes gets lonely and I occasionally feel lost but the community is always there, and rightly so, for those moments.
“My relationship this year has had a pretty big high – we finally live together… It’s not without its challenges, because I’ve found sharing more about my chronic illness lifestyle whilst living with someone, very hard at times. It’s taken me by surprise and it’s not what I expected but I know that this is what I want, so I must adapt.”
Living with someone is hard and even harder when one of you is ill and undertakes surgery. My partner has taken this year all in his stride; it’s changed our relationship and made it more grounded. We have more unspoken language and I love that at this stage.
This year has had been a flip of last year; some high and proud chronic illness moments but it has also had the lows of life. It’s surprise has been how calm I’ve been in the face of it all.
So, what have I learnt living with a chronic illness in 2019?
- Breathing through the pain is UNDERRATED and AMAZING
- Your body will heal, even when it is pulled apart; it will come back together.
- Take the pain relief if the doctors suggest it – they are very wise.
- Holding on to a negative will only cause more pain.
- You can do your best, and that will be enough.
- Trust in your instincts.
- You soon get used to your butt being looked at if it gets infected.
- Your bravery can inspire others.
- Falling apart isn’t something to be ashamed of.
- Invest in and use your time wisely.
2019 still feels half paused. But move on, we must. For there is no other option; time waits for no man.
I remember my parents saying that the years just fall by when you’re grown up but I never really understood or believed them. I can honesty say, I now do. Because time just keeps on keeping on. And it’s about what you choose to do, when you want to do it. There is no set schedule to life, but to live it how you see fit. And whilst you might struggle to find out what life means or what you want to do, time keeps on.
So 2020, I intend to continue to make the best of my time.