Some of us remember when our ‘chronic’ illness started whilst others got ill over time.
I can remember down to the hour when my M.E. ‘journey’ began.
My last ‘well’ day was November 17th 2006, it also happened to be the day I graduated from University. The day when I felt unbeatable and on top of the world walking across a stage was my last day of fully functioning.
I had moved home to Portsmouth from Plymouth during the summer to go on to study for a postgraduate degree at the University of Portsmouth. I had lived in Plymouth for 6 years and had been a student at the College of St Mark and St John (Marjons) for the last 3 years of my time in Plymouth. I had loved every minute. My friends were like family to me and were my world, the only reason I moved away was the local job market wasn’t suited to a graduate.
My move back to Portsmouth was to mark the start of a new exciting chapter in my life. My twenties had been full of love life drama and mini-crises including nearly being made homeless, being stalked and having a psycho housemate (and people wonder why I won’t ever houseshare again?!). I was looking forward to turning 30 on 13th October, it was a fresh and exciting start and time for a whole new me. Well, the second bit came true!
The Sally that I am now started on November 18th 2006. The Sally that had existed before that date is like a whole different person to me now. That Sally was a typical student, I was a mature student but that wasn’t going to stop me from joining in! I virtually lived in my local Wetherspoons (Union Street in Plymouth…anyone know it? Always used to smell of vomit….anyway…I digress!). I used to meet friends for breakfast, lunch, and dinner, I used to study in the pub, I wasn’t always drinking alcohol, I just liked to be sociable. I was on the go from when I woke up to when I went to bed. I went to bed after 10.30pm every night, something I can only dream of doing now!
Summer of 2006 was spent settling back in with my parents, they had suggested moving back in to save cash while I was studying. It was supposed to be a temporary measure. Can anyone call nearly 13 years ‘temporary’?! It was a huge adjustment to go from being independent for nearly 7 years to being back ‘under the roof’ of parents. I started my post-graduate degree at the end of September 2006, I signed up for a Russian language course. My eventual plan was to research Russian politics…in Russia. I made a small group of friends and spent the first month or so settling in.
I turned 30!! It was a really good evening with all of my friends and family. Friends had ‘come up’ from Plymouth and crashed on the floor of ‘our house’, and family had travelled down from the Midlands. Life was good. I was surrounded by love. I gave a mini speech at my celebration dinner (before we went clubbing) and toasted to the future.
Five weeks later, my life was torn apart.
The ear infection that triggered my M.E. hit one hour into the 4-hour drive back to Portsmouth the day after the graduation ceremony. My vision ‘went’, it seemed as though I was looking through a kaleidoscope, I couldn’t stop being sick. My Dad (ex-military and very ‘punctual’) didn’t appreciate the 10 stops en-route so I could ‘use the facilities’. I was so unwell during that trip and the following 6 weeks it’s a deliberately blurred out memory.
I never fully recovered from that virus. I felt lethargic, dizzy and nauseous well after the expected 6 weeks of illness. But, slowly, I found ways to work around feeling unwell and managed to continue studying despite being advised to ‘take a break, come back to Uni when you are well’. Something in me knew if I stopped I would never go back. So I kept going. I dropped out of the Russian language class though, no way could I learn a language that used a blend of 3 alphabets….too much! I went on to pass the course but I will always beat myself up for not achieving the grade I had wanted to achieve. In fact, I was so disappointed in my result that we never framed the graduation photos and I didn’t promote my MSc at all until recently. I had an epiphany when I set up Stripy Lightbulb CIC in September 2018. I achieved a postgraduate degree whilst going through a very traumatic, upsetting diagnostic process and while feeling exceptionally unwell. Well done me! So, whether you think having your qualifications next to your name is pretentious or not (I used to…I changed my mind), I am very proud to be Sally Callow MSc on LinkedIn. 12 years after I graduated and I am finally recognising the achievement. I’ll never know if complete rest during the initial phase would have prevented the development of ‘mild’ M.E. but I refuse to beat myself up about that.
January 2007, another ear infection hit. Extremely unwell for another 6 weeks. Recovered back to around 50% of my ‘normal’. I knew something wasn’t quite right so kept going to see the doctor. I had brain scans, blood tests…all of which will sound very familiar to any M.E. patient reading this. One year after I graduated, I was told that I had chronic migraines. I Googled what those symptoms were and they seemed to fit. I was put on Propranolol and after around 2 weeks my dizziness symptoms eased.
Lots more tests and 18 months later, I got a diagnosis. I had Chronic Fatigue Syndrome.
Since becoming an M.E. advocate and knowing about the ICC Consensus/7 indicators, I identify as having M.E.
The life I am living now, 13 years later, is nothing like the life I thought I would be living. My health has impacted my chances of ever meeting a partner (I can’t meet someone in my living room), I can no longer work full-time hours, I can’t afford to move out, and my social butterfly tendencies have been squashed into oblivion. I can’t even remember the last time I went on an evening out with friends. I’m now limited to breakfast and lunch meet-ups. I would love to go clubbing. In my head, I am still just 30, still a social queen and still able to work hard – party harder.
I know I’m not alone when I say that sometimes having M.E. feels surreal, how on earth can this be happening to me? Am I imagining it? My life is not supposed to be like this.
On a positive note, if I hadn’t ‘acquired’ M.E. I wouldn’t be doing what I am doing now. I wouldn’t be writing this blog for Foggy’s Followers, I wouldn’t have made thousands of ‘friends I haven’t met yet’ worldwide and I wouldn’t have the same purpose in life. M.E. is my entire world now and I’m actually content with that. I’ve accepted the hand that has been dealt to me and I am running (metaphorically speaking) with it.
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