Some kind of normality!ย 

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! 


The month of Marchย 

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 ๐Ÿ˜‚. 

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! ๐Ÿ‘Œ๐Ÿ’ช

My Kryptoniteย 

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! 

It keeps on giving!ย 

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 ๐Ÿ˜‚๐Ÿ˜‚

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 โœˆ๏ธ

Just do it!ย 

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 ๐Ÿ™ˆ. 

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! ๐Ÿ˜‚) 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!).

The tough callsย 

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! ๐Ÿ™ˆ). 

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! 

Dear 2016…

It’s been one heck of a year. 

2016 began in hospital – New Years Eve 2015 is one I’ll not forget in a hurry, I had tests to see how well my stomach and bowel were working and it turned into a frank discussion. I was informed the biggest decision I would make in the year ahead was a stoma bag or a body bag. I’ve always appreciated this honestly from medical staff. 

Bringing in a new year in hospital I knew little of what was ahead of me and that was probably for the best. I knew I would be getting an NG feeding tube to help with nutrition (it was the reason I spent Christmas in hospital!). If someone told me of the events that would follow I would have been back tracking into 2015.

You could never prepare yourself for anaphylaxis reactions, weeks in hospital, TPN feeding, 2 major surgeries, complications, vac machines, post up flares, urosepsis, moving to live permanently 70 miles away and constant hospital admissions just to name some of the challenges of 2016. I can honestly say sometimes it’s better not knowing what is ahead of you. 

At times during the last year I wondered if I would have the strength to survive both physically and mentally. I like to keep things positive but the year had some dark moments, while there may of been a smile on the outside there was plenty of tears, melt downs and desperate moments. There was fear and at times I was terrified even if that wasn’t always obvious. 

It would be so easy to say 2016 was  crap and just ride it off BUT that wasn’t the case. It’s so easy for us to remember the hurt, the things that went wrong but what about all the good things that happened? 

For the last couple of years I’ve made a blessings jar, it’s so easy to miss the little positives in life, the moments that make you smile, new opportunities, hopes and dreams or just some things that make life a little bit easier. I’ve noted these down (and there is a surprising amount!) and now I get a chance to remember the good parts of the last year. 

There is no doubt that 2016 has been a challenge, one I hope never to repeat. It’s a given there will be obstacles ahead in the next year but for now I’m going to take with me the positives of the last year. 

I’m so thankful for the people that just jumped on this crazy ride with me, people who believed I could make it out the other side of each disaster, who listened to the frustrations, encouraged and brought me back to reality when needed. You are awesome!

So no matter how tough the last year has been take some of the positives with you into the year ahead.. here’s to 2017!! ๐ŸŽ‰๐ŸŽ‰

* The picture below shows the basic idea of the blessings jar*