Hello and welcome to the Believe in ME podcast with me, Rhona Barton. This is the first episode of Season 1 for this podcast, and I thought I’d start off right at the beginning by telling you my ME story.
Before we jump into my story fully, for those who aren’t sure, ME stands for Myalgic Encephalomyelitis.
ME is a long-term fluctuating, neurological condition that causes symptoms affecting many body systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
The list of symptoms people can experience is wide and varied and, unfortunately, they don’t seem to fit a set pattern. As I share my story in the coming weeks and months, I’ll talk to you about some of the symptoms I lived with and give details about the treatments I tried and breakdown what worked for me and what didn’t.
Ok, let’s get stuck in.
In August 1998 I was working in the Hospitality Industry. I was having a fabulous time working all the hours sent in a week and then some! I had a clear plan in my head of where I wanted to be and a reasonably set timescale to reach that goal. At the same time, I had recently left a job where I wasn’t 100% happy. In all honesty, I’d been bullied. I’d been bullied and didn’t really know how to deal with it. I was only just 21 years old. I was on the cusp of moving out of home and-as my Grandmother used to say-the world was my lobster! Or at least it should have been.
One evening, when coming to the end of my shift, I was sitting in a meeting with some of the senior management of the hotel in which I was working. I’d joined them in the January, so I was still fresh-faced and enthusiastic about setting up the Christmas display for marketing purposes. Yes, you heard that right. Christmas display in August. To be fair, we’d been working on it since June so by August I’d resigned myself to the fact that I would hold Christmas in my heart for 6 months of the year! It was during this meeting that I looked up to see a number of faces staring at me. Apparently I’d fallen off my chair and was lying on the floor. I hadn’t noticed. I felt I was still upright. I didn’t know what the strange looks were for. Needless to say, I was looked after by my manager and, when it was discovered that I was too dizzy to drive home, my Mum was sent for and dutifully picked me up. I remember thinking, “I don’t think I look ill”.
A couple of days later, I wasn’t feeling any better and so I set off to my doctor’s appointment looking like I’d had more than a glass or two of something strong and using the walls/fences/hedges of various houses and gardens to keep myself upright as I walked. A diagnosis of Labyrinthitis followed. I knew what that meant as my Mum had had the same thing a few years earlier. For those of you who are not sure, it’s an inner ear imbalance. It causes severe dizziness and nausea. It causes you to walk into things and fall off things. You are currently looking at the woman who can fall over sitting on the ground just due to a strongly blowing wind! Thankfully that only happened the once and I managed to avoid landing on the cat, so it was all good! Still, I didn’t look ill.
Three weeks later, there was still no improvement. If anything, I was getting worse. I had additional symptoms that I kept trying to push through and ignore. I sat one evening and made a list of what felt “wrong”. I then forgot to take the list with me to the next doctor’s appointment but had a reasonable bash at remembering what I could when I spoke to him. His response didn’t take much thinking. He’d seen me a couple of times in the 3-week period and noted himself that I wasn’t improving, and small things were coming to the forefront each time we spoke. His diagnosis - and one I would live with for almost 10 years - was M.E. And you know what? I didn’t look ill.
When you break down the fancy Latin words, Myalgic Encephalomyelitis means brain and spinal cord inflammation with muscle pain. The downside to this name is that it only just begins to scratch the surface of what sufferers are going through.
Some of my symptoms included:
· pain, such as aching muscles and joints; nerve pain; headaches and migraines; jumping or twitchy muscles;
· sleep disturbance, including unrefreshing sleep; trouble sleeping; difficulty getting to sleep which led to hallucinations;
· brain fog or Teflon head as we sometimes called it, which included memory problems; speech issues; lack of concentration; inability to plan or organise thoughts;
· issues with my nervous system, such as poor temperature control; hyper-sensitivity to light/sound/smells and poor circulation, as well as the on-going labyrinthitis;
· digestive issues, such as food sensitivity; and reactions to any medications stronger than paracetamol.
All in all, if you can imagine having the worst hangover of your life and running a full marathon all whilst suffering from the flu, then you’ll begin to get an idea of some of the symptoms I lived with.
And that’s the thing. I was living with this. I wasn’t giving up. For 5 months I managed to push myself to get up, get washed and get dressed each day even though I wasn’t able to do much else and was still extremely dizzy.
In January 1999, whilst walking through George Square in Glasgow; having accompanied my Mum and step-Dad as they took my older brother to a job interview, I collapsed in a heap. Perfect for a Sunday morning in Glasgow! I’m not talking about almost lunchtime, oh no, I’m talking about half past 9 in the morning, when other people are stumbling home from a great night out! I went down like a lead balloon. I can honestly say there’s never really been anything elegant about me!
My Mum and my brother just stopped and looked. I’m pretty sure they thought I’d fallen over something. In truth, my legs had just stopped working. After a few moments of “get up, the car’s just there” and “what are you playing at?”, we all realised that I wasn’t going anywhere without some assistance. My brother picked me up - literally put me over his shoulder - and with all the grace a big brother can muster, threw me into the back seat of the car!
That was the start of my time being paralysed, bed-bound and wheelchair bound.
M.E. is diagnosed through the elimination of other things. Things such as MS; Addison’s disease; Anaemia; Major Depressive disorder; panic disorder with agoraphobia, as well as a few others. So, to suddenly throw in some paralysis, just added to the mix. Having been poked and prodded in order to have blood taken and tested; MRI scans carried out and a lumbar puncture to read my spinal fluid levels, it was agreed that this was just another stage in my M.E. Albeit a rather scary and life-changing stage. Other than the wheelchair, I didn’t look ill.
As I’ve mentioned, I spent almost 10 years living with M.E. I tried all possible solutions that were put to me, including hydrotherapy; speaking with a psychologist; cognitive behavioural therapy; graded exercise; dietary changes; massage; acupuncture … the list goes on. Very few of these gave me any relief from my symptoms but it didn’t stop me, or my family, from trying them out. We made appointments, attended them and kept everything crossed that this one might be the one that worked.
In amongst all of this however, what I haven’t mentioned are the additional things that happen. The things like the isolation; losing all except 1 friend; losing my job; losing out on a house I had hoped to move into; having no social plans because I couldn’t tolerate light/sound/smell for more than a few minutes at a time and even if I could, the places I wanted to go weren’t wheelchair friendly. My whole world shrank down to my bedroom. My life revolved around whether or not I had the energy to take the next breath. Can you imagine what it’s like to be in pain; to want comfort from your family and yet not be able to tolerate having another body in the same room as you? To be unable to take even the lightest of cotton fabric against your body because it feels like you’re burning from the inside out?
This daily struggle went on for years. It didn’t just impact me. My Mum, my Dad, my Other-mother, my brother were all affected too; as were my Grandparents. All of these wonderful people had their lives turned upside down just as much as I did, and not one of them complained or made me feel less than I was just because I was unwell. They were - and still are - my unsung heroes. From my brother picking me up and throwing me into the back of the car; to him strapping me onto the back of a tandem he borrowed from a friend in order to let me get out for some air in the only way he knew how; to my Grandfather winding me up knowing I couldn’t do anything other than report him to my Grandma; to my Mum helping me wash my hair, brush my teeth and get me dressed; and my Dad & Other-mother bringing the dogs out to visit me and letting me enter the three-legged race with one of them from my wheelchair. They did everything they could to help me see that - although my life was different now - it most certainly wasn’t over, and we all hoped it wouldn’t be forever. After all, I really didn’t look ill!
Some of my happiest memories come from my time with M.E., and I do my best to continue living with the lessons I learned during those years.
So, you might be thinking what finally got me back on me feet? What magic wand was waved to bring me back into the world outside of my own bedroom? Well, that was something much more unconventional than you’re probably thinking. Something that I’m not sure would ever have been suggested if I’d visited every specialist for every chronic condition around the world. It’s certainly not something I would recommend or endorse!
I had a car crash. I realise that sounds like quite an extreme solution, and I’d like to reiterate the fact that it is most definitely not something I would recommend!
There were 2 problems with the car crash, beyond the obvious.
1. I was on day 1 of a week-long holiday with my Mum and my Aunt and we hadn’t arrived at our destination.
2. I ended up with whiplash.
The whiplash affected my neck and my back. It meant that I actually had additional pain that limited the amount of time I was able to sit. I could lie flat or be held up in a standing position but sitting was very painful. Well, there went the use of my wheelchair!
My Mum and my Aunt had to spend some of the week carrying me in and out of our holiday rental home, but by the end of the week I was able to take 6 very precarious and terribly unsteady steps as they held me up, one on either side.
I cannot tell you how excited (and knackered) I was! I would wear myself out by insisting on walking over to the sink to brush my teeth, and then walking back to the sofa where I promptly collapsed for the day!
I still had to pace myself. What I did one day would impact me over the next 2 days quite badly. This was a pattern that lasted for a while. Until my brain finally accepted that I had limited energy supplies and I couldn’t dip into my energy ‘overdraft’ regularly without needing a decent recovery time to pay it back.
Slowly though, over time, I managed to go from the wheelchair to elbow crutches.
From there, I progressed to 2 walking sticks, then 1 and finally, nothing. I had regained my freedom. I realise that by telling you this is sounds as though things happened in a nice straight line. Kind of like moving from A to B to C but the reality was quite different. I would say it was more like a ball of wool that a cat had been playing with – all wound up with some knots. Those knots being my set-backs.
Over time, I got myself back on track. I started my own business and earned some money in the hours that I was able to work, and eventually went back into gainful employment.
So that’s me and my ME story – the short vers
There are a few things I’d like you to take away from this:
1. 17 million people worldwide live with ME every day. You are not alone.
2. Although you may be having a hard time at the moment, there are people who understand and empathise with you.
3. I’m not going anywhere. I’m here for you and to share my experience and learnings with you.
4. I'm proud of myself! I’m proud of what I’ve been through. I’m proud of the lessons I have learned along the way, including those that I didn’t learn the first time around!
5. We never know what is going on with other people. Not truly. We do not live inside them; we do not feel things the same way they feel them, and we do not always show others when we need help. So if you’re listening to this as a friend, family member or partner of somebody who has ME, please keep this in mind as you look at them and think “they don’t look ill”. Sometimes, the face we wear with others is to help us get through the next breath.
That’s it folks. Today I’ve shared a short version of my own ME story with you. I chatted about how I became ill, some of the impact it had on me and my family. I touched on some of the treatments I tried and the very random way I got out of my wheelchair.
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