I started this blog back in 2016.. during the hospital admission that lead to me having a lot less bowel inside of me..
It’s funny cause when life is good finding the time to blog is difficult- you get lost in your feeling of normality which is brilliant.. on the other hand sometimes when everything is falling apart it’s hard to find the right words.. sometimes there are no words.
This blog has been about Crohn’s disease but in June this year I got the diagnosis of Behçet’s disease (its a rare one.. just google it cause I don’t even know where to start explaining it!) what I can tell you is that it’s painful, frustrating and there is very little understanding of it.
Having a diagnosis in a sense is good but to treat it I’ve had to go on some pretty powerful drugs- all of these have side effects.. which are zero fun! I’ll be sending out the letters of apology in advance of the reducing the steroid dose before the epic mood swings 😂🤦♀️
Since Christmas I’ve been on one epic rollercoaster ride. There have been what feels like endless nights in hospital, theatre, a lot of drips and more bloods tests than I ever want to remember. A bit of jaundice thrown in – check out the yellow in the picture below.. quite impressive!!
I could probably count on my fingers the number of nights I’ve been at home since Boxing Day – there has literally not been a weekday in January that I haven’t had some kind of contact with the hospital.
One of the biggest things I’m trying to learn is it’s ok to say it isn’t fair or that it’s completely crap. Sometimes you just have to be annoyed at the world and let it all out and I’m learning that no one actually expects me just to deal with it.
The last few weeks have taught me that I’ve the very best group of people rooting for me, the most amazing family and friends who show up, give me space to rant, join my pity parties, make me cups of tea on Home leave and bring me food when the hospital stuff is awful. They let me be myself.. they don’t treat me as an illness. I am Janette… getting a small text just to ask how things are can make the biggest difference on a bad day.
Life gets tough.. I often get asked how I do it when I wasn’t given a choice.
My blog has been neglected lately but life has been super busy. Some kind of normality has resumed..
Five weeks ago I started a full time teaching post, its been tough going especially as I had unplanned hand surgery the day before but it’s been such an accomplishment, something I didn’t imagine I would be doing even a few months ago!
When life gets busy tiredness kicks in, there has been some tears, tantrums and further hospital admission for a nasty infection but on the most part I’ve been doing really well.
Last weekend was the Lets Talk Crohn’s and Colitis Night of Appreciation – medical professionals were nominated and given award for the support they have given people with IBD, I was delighted to be able to present my GP with an award on the night. There were other professions there from Derry who has a huge part in my treatment and it was great to see them and thank them personally. People who have saved my live and been there in the worst of it.
Last weekend and working has made me realise that things are pretty good right now, I get symptoms everyday but I can manage them and it helps to be a little stubborn too!
There is big plans for this year- I have officially been accepted into queens to do nursing. A career change that I’m very excited about but I’ll be staying in teaching for a few more months yet.
I haven’t quite worked out what normality is yet but so far I’m liking it!
March is a month I have started to dread coming..
March 2015 was my diagnosis date closely followed around 2 weeks later with a bowel perforation and a scary time with sepsis.
March 2016 fell during my 6 week stay in hospital last year, 2 operations and another run in with sepsis.
March 2017 hasn’t been quite as dramatic but a week was spent in hospital with a bad flare of Crohn’s and a few very rough days.
My great granda used to always say if you survive March you’ll be alright for the rest of the year. I think I am working to this theory!
Although March has brought some rough days and weeks with illness this week has been one of good news! A job opportunity and an offer from a university for a place on a nursing course.
It’s funny how you get so used to a constant string of bad news and suddenly get a lot of good news it feels surreal and you appreciate it a whole lot more.
Although I’m still not feeling the best I am more determined than ever to try and get back to some kind of normality- the steroids kicking in too definitely helps 😂.
Life with illness is unpredictable and brings plenty of frustrations and bad days but it just means you have to celebrate the good news and good days all the more! 👌💪
Today was a kryptonite day!
We recently found out what my kryptonite is. It’s a harsh IV antibiotic called gentamicin.
Recently I’ve had LOTS of infections – when oral antibiotics aren’t effective we move onto IVs and by this stage I’m usually feeling pretty unwell. Gentamicin while it works on the infection hits me while I’m down- it makes me into an emotionally wreck.
Thankfully the kryptonite effect doesn’t last forever and neither do the bad days!
Crohn’s disease is known for the affect on your bowel – many think it’s all based around the toilet and while that is partly true it can be so much more as well.
Crohn’s can be the gift that keeps on giving- having a few days of multiple appointments makes you realise just how many different parts of you it affects.
A big one for me has been eyes, I had problems long before I was diagnosed but it seems that was a warning sign, it means I have reduced colour vision and one has vision that can’t be fixed with glasses- you get used to it tho!
A barrage of appointments across different clinics can be a little overwhelming and tiring. My ultimate goal at the minute is to try and get discharged from as many as possible 😂😂
Today started with a vedolizumab infusion- I’ve decided to start using the time to do things that our relaxing, after all it’s 3 hours you ain’t getting back and it extends some of my Disney appreciation.
The disease is a rollercoaster, coming from holidays to appointment central is a bit of a reality check and it’s easy to get overwhelmed… maybe it’s time to get the next holiday booked ✈️
Tomorrow I get to go on holidays woohoo!!
As excited as I am it does bring some apprehension- it’s the first time we will have been abroad since I took really sick, for the last 18 months we’ve stayed in the safety net of the NHS if we had been travelling. I’m also just getting over a nasty infection and iv antibiotics so that hasn’t helped the travelling nerves!
Things over the last month or so haven’t been that great but as I look on Facebook memories, glimpses of last year are starting to pop up. This day last year I had a consultants appointment, I had an NG tube and it was the day we decided that really my only option for quality of life was surgery. I remember the feeling of panic but relief- I couldn’t keep going much longer.
Little did I know that day that less than a week later I would have anaphylaxis, one week later be in a&e having vomited up the tube and just 9 days later be admitted for the craziest and roughest 6 weeks of my life!
When things don’t feel that great its good to remind myself how different things are now and that this time last year I couldn’t have even thought of going on a holiday.
We are travelling on holidays with EasyJet- a big shout out to them as they let you carry a free medical bag (if you have a letter from your doctor). This means there is a chance of me being able to take some clothes as I currently carry the pharmacy with me 🙈.
As I packed my medical bag today I’ve been reminded to ‘Just Do It.’
Long term illness can be a pain in the ass (literally! 😂) but you just have to do it, make plans even if they are short term or just about survival, make the best of situations and take the holidays (with some epic travel insurance!).
Somedays can be a constant reminder that I have a chronic illness and there is no cure. Having multiple appointments in 24 hours is one of those days (my current record is 4 different departments!)
Others days I go to work and apart from an odd dash to the bathroom I can have a pretty normal life. Sometimes with that normality becomes extreme tiredness, like not the normal I’ve worked a day tired more of a ‘don’t poke the bear kinda tired! 🙈).
Anyone who knows me will realise I’ve a strong desire to work, I’ve applied for new jobs from hospital, went to interviews within hours of being discharged. Like everyone else I’ve big dreams and loads I want to accomplish.
However sometimes there needs to be a reality check and this week I had one. I was offered a full time job with a 6 month contract.. what more could you want right?
This is where the tough call came in, the short story is I declined the offer- it is one of the worst feelings but when you realise that all the advice coming from the medical team is don’t work full time you just gotta listen. My dislike of hospitals wins!
I’m a firm believer in when one door closes another will open.. here’s hoping there is something even bigger and better behind the next door!