I’ve thought about this post for a while, I love Christmas (and birthdays too!)..
Around this time last year I learnt I was going to be spending Christmas in hospital, I had been waiting on a bed for a while and of course one came free on the 23rd December. My Crohn’s disease was uncontrolled and I was malnourished since I hadn’t kept any solid food down in weeks.
When I heard the news I was obviously pretty devastated, everyone wants Christmas at home with their family and not stuck in a hospital ward.. I panicked on how I would tell the people closest as I knew the upheaval would be as big for them as it was for me.. we had to move Christmas over 70 miles!
This year I’ve got another Crohn’s flare right before Christmas. Although sometimes it feels like I should decorate our bathroom as some days it feels like all I see I am so thankful I’ll be spending Christmas at home this year.
Last year put things into perspective, although we enjoy the presents and the business of Christmas the thing I am looking forward to the most is all being under one roof and sitting around the one table.
It’s important to spare a thought for the medical staff that will be leaving their families behind to go to work this Christmas. Take time to appreciate the little things within all the craziness of this week and when things aren’t as planned make the most of what you have.
Tomorrow sees the start of Crohn’s and Colitis week – it is a cause near to my heart..
Just over 18 months ago I had never heard of the disease, the impact it could have on someones life but I soon learnt the reality, when I got diagnosed I had no idea what lay ahead but that was probably a good thing!
IBD has without a doubt had a big impact on my life but not all negative but it has made me more determined than ever to not twell on the bad and keep pushing forward with all the strength I have. It has made me think about priorities and seize new opportunities.
Friday is GO PURPLE DAY… I would love it if you would go purple and send me a picture to raise awareness of IBD.
And who doesn’t want to wear purple for a day!
It’s new drugs day!
After coming off medication to get the chicken pox vaccine – it’s time to go back on Crohn’s medicine.
The disease seems to be relentless at the moment and I’ve been in a flare for the whole period I’ve been off meds. I haven’t been able to turn to the trusty steroids so things have been managed with fluids, pain relief, anti sickness and some iron and blood thrown in for good measure. It’s been rough but another milestone complete!
Getting started on medication is a relief but also unsettling, I’ve not had much success with them in the past. I’ve been allergic or not responded. The fear of an ng tube or another surgery is always there.
Through the uncertainty you have to keep positive, different drugs work in different ways and maybe this time it’ll just be the right combination. As long as they work and the side effects aren’t too grim that’s all you can hope for!
I think the biggest emotions for me in this crazy rollercoaster of Crohn’s and complications has been frustration.
My personality is I want to conquer everything and I want it done yesterday but quite frequently my body throws a huff and then things don’t go to plan and it feels like one step forward and three steps back. This week I am down with another infection, off work sick for a few days and feeling the frustration.
I get frustrated when I have so much hospital time, when I have to cancel plans, when I’m not well enough to work and when things that were so easy before seem nearly impossible now.
I’m stubborn so I do push myself a lot to have a new “normal” but with that comes a loss is identity. I am not the same person I was even last year. Recently I got reminded that illness can take some things away from me but I am still a daughter, a sister, a teacher, a friend amongst other things and no illness can change that.
Some days I realise that my illness has opened new doors. I never imagined I would be filling out UCAS to apply for uni next year and I wouldn’t have met some amazing people.
Days that I am frustrated and feel like I am getting nowhere it’s important to remember to just master one day at a time and do it again the next day…
I’ve thrown myself into work and finding a normality over the last couple of weeks, thankfully I haven’t had many appointments so I feel like I’ve had a bit of freedom!
I know that I’ve probably worked more hours than I should have, not spent much time resting but I’ve been able to do it! It’s a good thing being tired cause you’ve worked hard instead of the sickness making you tired. However I’ve realised that things that came easy before, now take more time and energy so I have to be more proactive.
Somedays my stomach still hates me and I think I’ll have to ring into work sick but I have been able to push through it. The sense of achievement from working keeps me going. I love it.
I got to take some time out this week and recharge my batteries. The galgorm is fab! Eating afternoon tea I realised how far I’ve come in a year.. this time last year that wouldn’t have stayed down more than 20 mins!
I also loved the message they had in the room…
I still take things one day at a time, I know as things continue to improve and I get my new drugs (9 more days!) I’ll be able to plan a little further ahead. It’s exciting
At the minute my biggest fear is if I stop I just won’t start again! So you just have to keep swimming!
This time last year I was puking my guts up on a daily basis it was miserable however one of the biggest challenges recently has been coping with my Crohn’s flaring straight after surgery.
When you’re health is unpredictable and you are in your 20s it doesn’t feel fair, prolonged hospital stays when you are supposed to be enjoying life is frustrating. You lose a sense of self, you aren’t the same person anymore.
I’ve come to realise you can see this as a positive.. it’s an opportunity to have a fresh start, go into a new area of work – try things you’ve always wanted too and explore new avenues. I’ve come to realise that life is short, everything can change in a day but I have learnt what the important things are.
This last week I’ve pushed myself more than ever.. I ended up working 45 hours in less than a week (this was a little crazy and not recommended as a norm!), I’ve cycled 13 miles and threw myself back into finding a normality. I’ve been working hard to group my medical appointments on the same days, this helps them to stop consuming all my time!
For the first time in a while I’m excited about the future and have my positivity back.. even though I’ve symptoms everyday – that’s ok! I can still seize opportunities. A few years ago it took little effort to do normal things but some days now it takes a lot of effort to do little things but it just makes me even more determined.
I’ve got Crohn’s but it ain’t got me!
Last week I was ready to conquer the world.. this week I find myself back in hospital with yet another flare up! Yesterday I had the gut feeling (literally 😂) that things weren’t quite right.
Being allergic to everything and the fact I am in the middle of a chicken pox vaccine makes it very complicated to have a plan.
I hate hospitals. I know it’s the best place to be when things are flared but it doesn’t make me like it anymore. At the minute I’m counting down the days to start new drugs.
A blip makes me concerned about my return to work, will I have to postpone it again after just one week? And to be honest I am not quite sure. I am trying to take the attitude of what will be will be. Some days that’s harder than others when the panic sets in.
After the surgery ordeal a blip isn’t the end of the world. I am finally learning (at last!!) do deal with things quickly, letting them linger on just delays the inevitable. There are better times ahead!