I've been blogging now for almost 2 years and only today realised that I'd never actually shared my story with you wonderful people!
I find sharing one's story can be of real therapeutic value, not only to the writer, but also to readers who may well be in a similar situation. It's a great way of getting your experience 'out there' as it were, and it's perhaps something that is a bit long overdue!
Ideally when recovered, I'd really like to publish a book of my experience through ME/CFS, my ups/my downs, how I found the answers, and how it changed me as a person, not just physically and mentally, but also spiritually and emotionally. Maybe this blog post would be a good starting point...a practice run! I suppose I'm also writing this in the hope that it will encourage others to share their stories too. They can be so inspiring. So here goes..
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| Me about 2 months before getting ill with M.E./CFS. Flying off a rope-swing in Fiji, where I'd been working that summer. I was very physically active in my teenage years |
As a young child and teenager I'd been pretty healthy. Had the odd bouts of Tonsillitis and colds, but who doesn't at that age. I was very active in the sporting arena, representing my school in Rugby and Cricket, whilst also playing men's football for a club in my area. I had the highest stamina (or amongst the highest in my year!) I won the 400m in my age group at sports day 3 years running (I don't write this to boast, just to emphasise how high my fitness levels were! :-) ) I pushed myself hard academically, getting A's at A Levels. I had very high standards for myself, and whatever I achieved, never seemed to be enough. I always had my eye on the next goal...the next challenge. I suppose you could call me a very Type A personality - which is very common for people who have gone through this condition. First year of uni flew by - drank a lot, made some great friends, had some great experiences, enjoyed my independence. It was probably the best year of my life. I travelled to Fiji that summer (2009), and worked as a teacher over there. It was great fun. Once back in the UK, 2nd year was fast approaching, and I started thinking about what career might suit me best.
Then everything changed. I fell extremely ill with Gastro-enteritis. It was so bad that I could barely get out of bed (interestingly prior to this, I'd had an underlying cold for a few weeks.) I was completely drained. I improved somewhat, but then a week later I contracted Glandular Fever. Double whammy. I was so ill I couldn't even leave the house, or my room for a long time. This period is still very hazy to me. I think the trauma of all the unexplained symptoms, no energy, and constant dizziness has caused my conscious mind to block it out. I kept thinking, 'What's wrong with me?' 'Why am I getting these symptoms?' 'What's happened to my energy?' I was literally in the crash and burn phases of the illness. In hindsight, I really should have really rested and just slept, but I just plowed on through - there was work to be done, therefore I had to do it. The next 4 months were a mixture of unexplained painful symptoms, extreme levels of anxiety, a heavy workload, and 4 Red Bull a day. In this first year of illness, I went through several relapses and just tried to push through everything, not realising that constantly pushing was making my symptoms worse.
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| Me on the far right about 2-3 months into illness...looking quite concerned! I was experiencing pretty severe symptoms at this time, always fearing I was going to collapse or get worse. |
I just wanted to psychologically escape the fact that I was pretty severely ill at this point, and it did that by pushing myself like I used to.One constant problem above all else was recurrent Tonsillitis every two weeks - I could have set up my own pharmacy with the number of anti-biotics I'd been prescribed! This first year was really tough. There was so much confusion and fear as to what was wrong with me and how I could change my situation. I didn't realise at the time that the constant fear and anxiety about my situation was making things worse. I somehow managed to play football still for my University team. Even though I knew it wasn't supporting me, being active and sporty was part of my identity, and I didn't want to lose it! It was a massive struggle, I'd lost pace, and I could feel pretty awful for days after playing a game. I remember one game where I only managed 10 minutes before I had to stop. I was a classic 'push through the pain' case.
I then came across meditation. This actually helped me somewhat, as it (unknown to me at the time) calmed my nervous system down. I also altered my diet to basically 'eat healthier,' without incurring upon myself any exclusions, such as gluten or sugar free. My diet was still pretty bad, just not as bad as it was - Iceland microwave meals, KFC, and Pot Noodle). I managed to get through Uni..just about. However, I'd only really improved a very small amount, and was still very chronically ill. Perhaps the biggest hinderance at this point was that I still wasn't listening to my body!
Being the typical Type A personality that I was, I decided to look for full-time work..even though I clearly wasn't well enough! I managed to get through University, but in all honesty, my course required only a few contact hours a week, and a few essays a term. It almost tricked me into thinking I was better than I actually was. I got a rude awakening when I went into working life! I decided to give advertising a shot, as it was something that genuinely interested me and judging by the series 'Mad Men,' looked like it involved lots of client lunches and Scotch. I worked for a couple of great companies, but I really struggled through, often in extreme physical pain, and feeling intense brain fog, amongst a high level of anxiety and stress about my symptoms. As my symptoms worsened, my job responsibilities increased. Unknown to me at the time, by trying to fight my symptoms and resist them, I was simply causing them to intensify and worsen - it was a vicious cycle. During this period I tried all sorts to cure me of this malady - Acupuncture, Bodywork, Osteopathy, The Lightning Process - you name it I tried it! None seemed to have a positive impact..
I simply couldn't work anymore. Even getting out of bed was a massive challenge, and a painful one. I had to stop and work on improving my health. As many of you Type A's will understand, this was a massively hard decision, as by giving up the ability to work and achieve, we are essentially giving up much of our identity and how we define ourselves in that moment. Unfortunately during my notice period, my employer decided to lump about 6 months work upon my shoulders. This made me even worse physically, and I actually recall a week before my last day, going to the nearest pub after work and sinking about 4 pints (and feeling even worse!) That was a real low point for me..
I took a month off to relax and re-evaluate. This was where my turnaround began. Up to this point I had 3 and a half years of no improvement, and worsening of symptoms. I was lucky enough to come across The Optimum Health Clinic in North London, through a YouTube video I think. I initially signed up for their Practitioner Training, as I wanted to work in the field of Therapy, and ideally with people looking to improve their health. I soon found that this clinic was really at the forefront of M.E. research, and I could see that they offered some fantastic treatment (NLP, EFT, Hypnotherapy, Coaching.) I soon signed up as a patient, having seen the numerous recovery stories. I started working with one of their Nutritionists. This was when I first noticed a change. My gut had been an absolute state for around 4 years, but once I got on the nutritional plan, within a few months that seemed to sort itself out. I was found to have Mitochondrial Dysfunction, so we treated that too. At this point, I also learnt that I needed to slow down, pace myself more, and listen to my body. This I have found is vital in improving your symptoms and condition. I also had a few sessions with one of the Psychology Practitioners, and was taught tools to help calm my system down. This took out a lot of the anxiety that I'd been feeling around symptoms etc. Progress was slow, but at least it was progress. It got me up to around the 75% mark. However, something was still missing, as I was still falling into 'Booming and Busting' patterns. I was referred to an exercise physiotherapist in October 2014 who specialised in CFS. When I first started working with her I could only manage 8 minutes walking a day without my symptoms getting a fair bit worse. 4 or so months later, I'm up to 26 minutes a day (without my symptoms worsening), plus 1-2 hours work per day, and Yoga 2-3 times per week. Tangible progress. I still have a fair way to go on this, as once I get to 30 mins per day, I gently and incrementally increase the intensity, until I'm jogging everyday and doing some resistance training without a worsening of symptoms. To reinforce my belief systems, I also regularly read and listen to recovery stories (and they are plentiful these days :-) ) They offer such great wisdom and advice. I also consistently use the tools I've been taught at The Optimum Health Clinic to help reduce anxiety levels around symptoms etc.
I suppose I wrote this to highlight that change is possible, even when it can seem impossible at times. The number of times I had tried something new with no success, and went home beating myself up about it were innumerable. I've had some pretty dark nights of the soul in the last few years, but things are now looking much more positive and structured. I think I found things that work for me because I kept on believing and never gave up. Belief is a powerful thing, and it's up to us to harness the positive aspects of belief.
Hope you enjoyed reading.
Adam
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