My Chronic Health Journey

Hello again!

I thought the best way for you to be able to get to know me better would be for me to talk to you about my health. My health is one of the biggest issues I have faced during my 19 years on this planet. I don’t try and talk about my illnesses as much as I can, so here we go. Out in the open. It’s a long story, so grab yourself a cuppa and buckle up.

I was definitely classed as a big ‘tom-boy’ when I was younger. I was always coming home with grass stained trousers, new bruises and cuts (not forgetting the time I fell off the monkey bars and had to be taking into hospital on a stretcher for a broken coccyx). Despite having asthma and the occasional flare up of eczema, I was a very heathy, active child.

I believe I was around 8 or 9, when I fell down ill with glandular fever due to stress as my dad had moved out. This is where it all goes downhill. I was in and out of the doctor’s office, and hospital rooms as I wasn’t getting any better. Blood tests after blood tests, they originally told my mum that they thought I had leukaemia. Luckily, this was finally ruled out when I saw a specialist at the hospital, who then diagnosed me with a life long condition called Myalgic Encephalomyelitis.

M.E made me completely bed bound. I had to be carried to the toilet by my older brother. I couldn’t hardly eat without being exhausted, and the pounding headache that wouldn’t leave my side was unbearable. I was missing out on school, and I lost a lot of my friends during this time. I think one of the hardest parts of it was being able to see the school and the park from my bedroom window, and seeing my friends play manhunt, climbing trees and riding their bikes, while all I could do was watch from my bed.

M.E currently affects 250,000 people in Britain alone. Each person diagnosed suffers from a range of different symptoms, but the main one being exhaustion and pain. It’s a very difficult condition to describe to someone, but the best way I’ve heard it be compared to is running a marathon with jet lag. It isn’t fun.

I loved school, and all I wanted to do was go back, whilst my friends couldn’t understand why I would want to go to school when I could spend all day in bed. Describing your illness to 8 year olds isn’t easy, and extremely difficult to understand. The ‘spoon’ theory definitely helped me put my emotions and feelings across to people. You start the day with however many spoons as you think you can deal with that day. So for example, today I started my day with 5 spoons. 1 used for getting dressed. 1 used for writing this post. 1 used for the drive to the hospital. 1 used for the MRI scan I’m about to undergo (More on this later), and then 1 used for the drive back. That is all my spoons used up, and I haven’t even thought about dinner or getting ready for bed yet.

From here, I can’t fully remember my ages or the years that I was diagnosed with my other conditions. I was introduced back to school part-time, and had a home tutor.

Next I was diagnosed with a condition called Chronic Pain Syndrome. The way I was told what this condition was, was that the signals in my brain get confused when I encounter pain. This means I could break my arm and it would hurt 10x more than the average break, or I would hardly feel any discomfort. Theres not much understanding to why this occurs, which leaves us suffers in the dark.

Not even a year later, I was back in hospital for more testing for another condition.It was 2006 and I remember ‘The Holiday’ had just came out on DVD. My mum, brother and I all sat down to watch it. I can remember the exact scene that the pain started. I got the most sudden and sharp pain in my right hip. I remember screaming and crying out in pain. At first my mum thought that I had cramp, or trapped a nerve, so I tried walking around the living room to try to ease the pain, but nothing stopped it. I currently had a virus, so was off school again. My mum rang 111, and they said since I had a virus, they thought my hip had become septic. I was rushed to hospital where I had blood tests and scans on my hip to see if they could detect any fluid. I stayed in for a couple of nights, and was discharged when they weren’t able to find anything wrong. Again, after seeing different specialists, I was diagnosed with RSD (Reflex Sympathetic Dystrophy), which is a rare disorder of the sympathetic nervous system.

Due to pain, I was put onto Codeine, which now is quite a scary thought to think I was so young, but on such a high dose of pain killers. What no one told me was that I couldn’t just stop taking them, and had to be weened off of them. This causes the most intense migraine in my whole life. I could see, I couldn’t talk, and the only thing I could do was to take paracetamol and sleep.

I was put on crutches to help with walking as I found this a massive struggle due to the pain. This was when I noticed my hands and feet were constantly freezing cold, and had a blueish, purple colour to them. Almost like they have been severely bruised. I was taken back to the doctors, and told I had Raynards, which is a condition which affects the blood flow to certain areas of the body.

You all still there? We’re not even halfway yet. We’re only on medical condition number 5…

This was where things finally started to slow down. I managed to up my hours at secondary school, my home tutor was canceled, and was able to become more social. The continuous battle my mum and I faced with school was a complete nightmare. They told me I shouldn’t take any of my exams, as they feared I wouldn’t pass them due to the amount of school I had missed. Me being me, saw don’t as do. I battled on, and actually managed to complete 6 of my GCSEs, which nobody thought I would ever be able to do. School was defiantly one of the most challenging things I found. I was often described as lazy, and a skiver, but this motivated me more to prove them wrong, and if I say so myself, I smashed it with my middle finger held high at them.

One of my main goals was to be well enough to attend prom. and guess what? Your gal did it.

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I started improving. I managed to get a job down the local pub and I met some of the most amazing people there.

My main interest was drama, and I was determined to complete an A-Level in it. Once again the battle continued, and I somehow managed to get accepted into sixth form. After two years of hard work, it was time to sit the final exam… and you guessed it. I had another flare up which leaded me into hospital for 4 nights I believe. I was told the only way I would be able to sit the exam would be to retake the whole A-Level. I was completely and utterly heartbroken at the fact I was so close, but was unable to finish it. I decided it would be for the best if I didn’t re-take. My mum always told me that you can do education at any time, and we knew that this was not my time.

I am now weeks away from being 20. I changed jobs (even somehow managed to become a manager at a pub), passed my driving test after multiple attempts, and have the best people ever surrounding me.

Saying all that, things never last good for long in my life.

I started to get serve lower back pain and abdomen pain. At first thought they believed I had a kidney infection and was put onto antibiotics. When I started to feel worse, I went back to the doctor, who was just as confused as I was. The pain was getting worse and I was getting no better, so was admitted to an emergency day unit in my local town for blood tests. I was put onto IV fluids and antibiotics, as they believed I had sepsis.

I have now been off work for 7 weeks. I have a MRI scan today, but they’re starting to think I have a condition called Endometriosis (it’s where the uterus lining sticks itself to other organs). Its been a long and extremely painful couple of months to find out whats happening, but fingers crossed I get the answers soon.

And that’s the last 12 years of my life summed up into one post. I missed out I also had my appendix removed in Newcastle (5 hour drive away from my house), and I’m sure I missed out some other things, but thats the majority.

My conditions still affect me daily, but I’ve learnt how to deal with them, and try to get the most out of my life without letting them effect me too much.

I still deal with certain people not believing what I am dealing with daily, but I have had to teach myself to not let them bother me. This is my life and I won’t let anyone or any condition let me stop living to the full.

I have big dreams of traveling the world, but life keeps throwing me challenges to face first before I go half way across the world.

I truly do not know what I’d do without my family and friends. You guys are seriously my rock.

Peace and love

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EDIT: I completely forgot to mention I was also diagnosed with Hyper-mobilitiy/EDS and also I have a cartilage tear in my left hip. You know you’re sick when you can’t even remember all of your illnesses…

DOUBLE EDIT: I mentioned how I was undergoing tests for endometriosis, which I have now had the surgery and recovering at home. You can read about the surgery itself HERE, my first week recovery HERE, and my second week HERE.

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9 thoughts on “My Chronic Health Journey

  1. You’re doing an awesome Job. I’ve been diagnosed with a few conditions (one of which is raynauds; which sucks doesn’t it!?) and I know people who have ME and chronic pain syndrome. I don’t have much of a point to this comment, but I thought you deserved to be told how amazing you’re doing.

    Liked by 1 person

  2. Hi Brooke , it’s Gary two doors up from you. That was a very humbling read and I feel for you . I know your battle just slightly different for me, you know my demons are hard of control.. keep on keeping on you’ve come to far to stop fighting. Love and hug from me and Molly. X

    Liked by 1 person

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