Hello, hello, hello!
It’s that time again in GP awareness month where I do my bit to raise awareness and I’ve decided that there is no better way to get involved than to tell your story.
My Gastroparesis journey began way back in 2012 when I was just short of my 16th birthday. I’d had some really rubbish few months, beginning in January when I sadly lost my Nanna. I’d found out in an awful way (over social media, can you believe it) and had to pass the message on to my own Dad to inform him that his mother had passed away. My Dad and Nanna didn’t get on, but no child should have to break that news to their parent. Just two weeks after my Nanna passed, my cousin ended his own life. Again, I found out through social media and again, I had to tell my Dad that his nephew was no longer with us.
March saw the end of my long-term relationship with my first ever proper boyfriend. The breakup wasn’t messy or dramatic, etc. It was a clean breakup. A mutual decision that things just weren’t working out. I think when you’re so young, we got together when I was turning 14 and he was turning 16, you both mature a lot during the relationship and end up being completely different people, so I guess we just inevitably got bored with each other? We grew apart.
So that breakup didn’t affect me too much, because of how clean it was. However, towards the end of April, I started seeing someone new. Initially, it wasn’t going to be anything too serious, we’d just hang out a little and see where we ended up. No pressure. WRONG. We got way too serious, way too fast. To this day I still say that that boy was my first love. I fell for him so fast, it was actually a little bit scary. He was my first heartbreak. And some part of me wonders whether it was only a heartbreak because of how messy we ended it while another part of me doesn’t wonder anything at all.
ANYWAY – that breakup was awful. He ended up being a nasty, vicious boy and I now have no contact with him. That breakup saw the start of my mental health problems and the first real signs of my GP.
At the start of that breakup, I weighed nine and a half stone. Just two weeks later I’d dropped to just over seven stone. But I chose to ignore it, passed it off as just a phase, stress related or whatever and told myself I’d soon gain weight again. Besides, I thought at the time that I looked ok. Looking back now, I was worryingly thin. But there was nothing I could do, I was eating! I’d not starved myself or gone on to some crazy diet. I’d not changed anything.
About a month later, my weight was down to five and a half stone. As a girl who has always been tall, I was 5 ft 7 inches and I obviously didn’t look healthy. But I seemed to be the only person who didn’t see it.
“I’m fine” became my catchphrase.
But then I realised I wasn’t. My mental health declined rapidly. I’d started struggling to stomach food. Some days even the smell was bad. The first time I noticed something was wrong was when I took one bite from a butty (a sandwich to anyone outside of Liverpool who might not know what a butty is) and immediately wanted to be sick. I knew that wasn’t right.
My mum took me to see my GP and he asked about my mental health immediately. I lied. I said my famous catchphrase and pretended I was fine. Besides, my parents didn’t know my mental health was so bad so I didn’t want to confess in a doctor’s surgery. The doctor asked how confident I was in terms of my body image. This time I didn’t lie, but that catch phrase came again. I was fine with my body. I’d never really cared what it looked like. But that breakup popped into my head in that surgery. The messages criticising the way I looked and how “fat” I was and suddenly I felt so body conscious.
The doctor prescribed me some anti-sickness tablets and sent me on my way.
They did their job for a little while.
I started eating.
I gained some weight.
A few years passed, I’d even had another boyfriend and another breakup.
That guy ended up being a stalker through the breakup and for a long time after it – literally a stalker.
But I got through that too.
Then I had another relationship and my mental health took a wobble. Nobody triggered it, my boyfriend was great. I was in a loving relationship, I had alright friends, a great family and I was doing well in college.
But then that relationship became toxic. He cheated. I stayed. We were alright for a while and then I was emotionally abused. I didn’t realise it until one of my friends messaged me explaining why she thought it wasn’t ok. Eventually, the relationship ended but just before that, my eating took a turn for the worst again.
I’d manage to get through meals and be fine most days. But other days I’d want to be sick after every bite, I’d gag while I was chewing food, I dreaded meal times.
So, off I went back to the doctors. This time I was sent for blood tests but they’d come back fine. I then got sent for a Hydrogen Breath Test. You take this tablet (or choke on it if you’re anything like me), wait a few minutes and then blow into test tubes through a straw. Your breath is sent to London and the lab looks for bacteria that may be living in your stomach.
But that came back fine too.
Weight dropped again, but only slightly, nothing to worry about.
However, my doctor was worried. She didn’t understand it and told me that if answers weren’t found soon then she’d be referring me to an eating disorder clinic seeing as I’d been told it was an eating disorder all along, yet they didn’t know why I wasn’t getting better. It turns out I had an ED, bulimorexia but that had been and gone by now. She just wanted some answers. And so did I!
But then I was diagnosed with GORD – a condition called gastro esophageal reflux disease which means that acid from your stomach leaks into your oesophagus.
That was a misdiagnosis.
Then I was sent for a camera down my throat so they could check for any abnormalities in my stomach or surrounding areas and it was THE MOST HORRIFIC EXPERIENCE OF MY LIFE.
I cried all the way through, my boyfriend wasn’t allowed to be in the room to comfort me, it was just horrific and I’d refuse it if they ever needed me to redo it.
That came back fine too.
All this time and I still didn’t know what was wrong with me. We were into mid-late 2016 now.
The breakup happened in October.
I got over it.
November 2016 I was diagnosed with Gastroparesis.
I’d been back and forth to a gastroenterology team in Liverpool’s Royal hospital and in all honesty, I’d kind of given up on a diagnosis. I remember the day because my appointment was an hour late, despite only being the third appointment of the day.
It was an odd diagnosis. There was no empathy with my doctor. She just kind of said “this is what you have” and then asked if I knew what it was. I shook my head and asked her to explain what it meant only for her to tell me she didn’t know much about it. Then she told me the worst medical advice ever – go and have a little look on google.
Of course, all kinds came up and I’d decided I had 2 hours to live and I was also pregnant with a brain tumour. I wasn’t. It was just Google.
But I did find a lot of good, reliable sources which informed me and told me everything I basically told you in my last post (look here).
Right now I’m stable, my anti sickness medication in managing nausea most days. The spasms are bearable. The dizziness etc is subject to each day. And my dietician is always there whenever I need him.
It’s a shame my actual specialist is a bit rubbish and doesn’t listen to what I’m telling her but we’ll see how she goes.
Overall, I’m fine. Really this time, not a catchphrase cliché. I’m truly as fine as I can be.
And this time, I have no boyfriend! But I do have an amazing set of friends, a fabulous family and I’m doing well in uni.
Feel free to leave comments about your own chronic illness journey.
With love & laughter,
Hayley @ Spoonful of Scouse