Hm. It’s been a bit of a wicked one hasn’t it, 2018?
It’s been a weirdly complex year since Day One, to be honest. What can be taken from 2018 is that I can take quite a fair bit of the ‘rough’ times; but let’s be honest, rough times shouldn’t be the norm should they?
I’ve had to do alot of fighting and convincing this year; something I was sure I did not have the energy for but got through it all! Admittedly, the results haven’t always been in my favour but I have always done what is asked of me.
As for goals, I set myself the following:
I usually don’t look at my goals until I come to review things in December, because I would rather not feel the pressure or feel bad about being ‘behind’. But in reality, I’ve always wanted my year to be productive. It most certainly has, but it’s not always been about these particular goals. Whilst I have achieved two of five, I don’t see this as a failure. Some of these things have been underpinned by my health and I can’t really get mad at myself for putting my health above my job or a holiday.
What has really helped this year has been moving and expanding my knowledge. I have resources in abundance and a person to lean on when it all gets too much. And whilst the last couple months have really sucked, having someone around all the time has been reassuring and lovely. I still struggle daily, but it doesn’t feel so overwhelming. And that is a nice change, despite needing more and more meds to get me through my days, the knocks that have gotten me down on my knees; I know I have support.
So, what have been the highlights of 2018?
- Making it the whole year without a hospital admission!
- Moving in with Ben and making our house a home.
- Thriving through my writing.
- Keeping my IBD stable with regular Vedolizumab – hallelujah!
- Being part of a patient involvement day with CCUK and BDRF
- Taking time off to make my mental health a PRIORITY
- Continuing to advocate for myself and getting the care I need.
- Learning to Calligraphy, Watercolour and Bullet Journal.
- Achieving and maintaining my performance at work.
- Believing in my voice – especially when I needed it most.
- Connecting with more and more people like me and cultivating friendships.
At times, it seemed like the bleakness was overwhelming and it was very hard to see any good from 2018. This was extremely evident between August and November when I felt things were spiralling. It was also true when I had my first anxiety panic attack and I struggle to come back from it. This year has tested me, in small and multiple ways. And it’s not until now I see just how many there have been.
Some have been really small but affect me daily. Others, have been bigger and have had a stamp on how I choose to see and think things, afterward. However, I am still here. I have gotten through those hardships. I have pushed through those negative emotions and tasks, and risen from them all.
I’ve built on the key achievements I had in 2017:
“I’ve learnt a hell of a lot about not only my health but myself. I’ve advocated harder for my own care as a patient, I’ve become more informed and I’ve toughened myself up to do what is necessary. I’ve found a job in which I love what I do and I am proud of my experiences. All the while, finding the courage to relocate, hold down my relationship and have time for my family. It’s been alot to cope with and I can safely say, despite my fears throughout the summer, I’ve come out stronger.”
And whilst the summer 2017 was a long while ago, I vowed to keep my word. I appreciate the health that I do have, albeit how it still tends to fluctuate and take me by surprise; I have yet to spent a day as an inpatient in 2018. That for me, is a big achievement. I’ve built on those lessons to whilst being prepared to fight for my care, also be aware of what it must be like to be a medical professional, telling a patient what is best.
“I’ve become a prouder and more confident IBD patient and ostomate throughout these last six months, especially.”
I’ve definitely seen the highs and lows of being a patient this year. And without having a day as an inpatient, 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’ve been more proactive without being a hypochondriac or being overly worried and stressed about certain events. Do not get me wrong; I still get worried but I’ve been able to control this better – thanks to some CBT.
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 relationship this year has had a pretty big high – we finally live together. And whilst it’s caused some stress, a lot of anxiety and made me question alot of things; it is now settled and is wonderful. Coming home to someone, or knowing at least you’re not alone, it’s very comforting. 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.
This year has had some high and proud moments but it has also had the lows of chronic illness. It’s surprise has been how many people have been in my corner for me.
So, what have I learnt living with a chronic illness in 2018?
- So much can happen in a year.
- Speaking honesty and truthful will always be a good thing.
- Ask for what you know you need, not what you think should be.
- Always be clear about what you have – you know more than anyone about your own health.
- Quality of life can be whatever you choose it to be; but use this phrase to emphases your need not your want.
- Give every doctor the chance to be your ally.
- Say thank you to everyone who helps you. It goes a long way.
- Talk to those who are closest to you, in the most candid way you can.
- Knowledge is power but knowing it all should not make you arrogant.
- Take care of you. Of your mind, of your body, of your comfort. No-one else will do this for you.
- Do not underestimate stress.
- Money is not everything. Peace of mind – however you achieve this – is.
- Believe in the power of karma but also know that you can control your own karma.
- Be kind.
2018 had felt very long and hard but also has flown by.
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 2019, I intend to make the best of you. I have some question mark plans but I am willing to be flexible and adapt. If anything, adapt to something new is what I’ve done since 2011 so… bring it on.