** Warning – this blog is unlikely to be filled with sunshine and happy thoughts **
I need an outlet, somewhere I can moan and complain to my heart’s content. Somewhere that doesn’t burden my family and friends even more.
I was happy. I had survived the hardest three years of my life (little did I know what was coming) and qualified as a Midwife. A Midwife with a capital M because I was proud, I could hold my head up and know I had achieved something that I had dreamt of for years. I could support women and their families throughout their journey to parenthood or support them if things went awry. I could share in their joy and try to ease their worries, fears and sadness. I could catch babies and give all that I could and become someone who would make a difference to people. I made it through those hard years of studying and working clinically because of the support of my children and my amazing family and friends.
Things should have got easier.
Things could have been great.
I could plan and think of amazing things…
Florida for the kids after a few years of saving.
Then my crazy forties once the children were older, with travel and beaches and cocktails and seeing the world (all between midwifery shifts!)
Then in 2013 I had an episode of the most extreme pain, it lasted a whole night. One of the longest nights of my life up to that point but now unfortunately a frequent experience. Things started to go wrong with my health. From that one night of pain it continued but I still managed to work and loved it, but I struggled at times because I was utterly exhausted and had episodes of awful awful pain.
In 2014 they worked out I had pitted areas in my gallbladder so this was removed. I got an infection and ended up back in hospital two weeks later.
The pain didn’t go away, I now always had some sort of pain. Whether it was dull and irritating or spiky and tense or excruciating it was always there.
2016 comes and I develop a new symptom, diarrhoea. Anything I put in my mouth made me immediately need to go, nothing stopped it even if I didn’t eat it would still happen. I ended up in hospital after almost three weeks, I had lost over a stone in weight. I was unable to work.
A CT scan showed inflammation in my small bowel and a stool sample showed inflammation. They decided it was Crohns Disease (a form of inflammatory bowel disease) and started me on steroids and discharged me. I still felt awful but it was only when the steroids stopped at the start of this year that I realised they were doing something.
Since January I have been more and more unwell. Follow-up scans and scopes (upper and lower gi) couldn’t find the inflammation and my gi wanted me to stay off the steroids so he could find the inflammation and confirm the diagnosis.
I feel like my life has been destroyed. I can’t get out of bed some days, even getting dressed is a struggle. I worry about being away from a toilet, the diarrhoea is less than at the start but I still go up to ten times a day.
This is my life now with an undetermined chronic health condition. This blog won’t be full of sunshine but it will give me some peace and maybe one day someone else who is having a horrible time might get some peace from knowing they are not being alone.
Now my life is limited to Spoons (Spoon theory) and never making plans because I don’t know if I can fulfil them and I hate letting people down. I feel I’m losing my grip on my amazing job and my wonderful work colleagues, I worked so hard to qualify and now I can’t even leave my house most days and haven’t worked for months. I feel like I’m a burden and feel awful for what I’m putting my friends and family through. I feel like I’m losing some of them too.
Life with an invisible illness is hard. Harder than the word hard, harder than anything a well person could ever imagine. Hard, relentless, ceaseless, cruel.
This will be my outlet. And as long as this post is I feel better for writing about it. Well done if you managed to read it all.
If anyone needs a spoon feel free to shout about it to me 🥄 I can’t reload your spoons but at least you’ll know you can get it off your chest ❤️
Strength, hope and love