About Alison ยป Hypermobility
Read about my journey:

In general:
    Short Bio
    Read the whole story
    See my life in pictures

Specific branches:
    Weight loss
    Changing career
    PCOS and Natural Fertility
    Hypermobility
 

An ‘unreliable body’

From as very early age I felt like my body was unreliable compared to ‘normal’ people’s bodies. Things always seemed to go wrong with it. The muscular skeletal problems my hypermobility has caused have had a huge impact on the course of my life as you’ll read below.
 
A non-functioning hand during an exam period
 
My teenage years and early 20s were peppered with various muscular-skeletal problems. I’d always be ‘pulling’ muscles and I was very often in pain. The first recurrent problem reared its head during my A-level exams. I was a conscientious student and had taken to revising by writing my notes out on index cards. After one particularly heavy session I remember feeling tightness in my right forearm and hand. The next morning I awoke with a problem with my right hand – my fingers were swollen, I couldn’t grip properly, the muscles in my arm felt too short, my elbow was sore and my shoulder hurt. 
 
I couldn’t do the simplest tasks, let alone write essays for 3 hours at a time: I couldn’t grip my toothbrush, cut food or even hold a knife at the dining table without pain. Tying shoelaces or buttoning up coats was nigh on impossible. 
 
When, after a few days it hadn’t gone away, I really began to worry: I was about to take 3 A-levels, exams which included large amounts of essay writing. Not being ambidextrous, the only way I could get some sort of support for my arm was to bandage it up from elbow to wrist really tightly, use a thick pen wrapped in hair bands and write using a motion that used my whole arm, not my wrist. I was such a hard-working student and having spent 2 years preparing it seemed my whole world was falling apart. I was an emotional wreck; thankfully my Mum was really supportive. I’ve always been fiercely independent, but I remember taking her scarf into the exams as a token to keep me going, to get me through.
 
I did get through the exams, and despite all the problems I got three B grades. I was supposed to go to university, but come the middle of the summer I still had no strength in my hand. I thought about the hell my life had been during the A-levels and envisaged 3 years of university stretching ahead of me dealing with the problem – the thought was appalling, how could I survive that?! So, I decided not to take the place at university. It was a crushing blow to me, I loved studying, and my family’s disappointment made it all the more upsetting. I tried to be realistic though – I reasoned that this was one of the shortcomings of being me and that I just had to get on with life the best I could. Yes, I’d never be as bright-a-star as my friends, but I’d learn how to cope and I’d just get a job that fitted with it. That’d be my life.
 
I saw a physiotherapist at the local hospital who treated me with various techniques – electrical therapy, stretches and neck traction. We didn’t get very far very fast.
 
Very slowly, over the following year the problem lessened. I worked in a shop for a while, and then as an office junior, then for a couple of years at a bank. I found that the problem with my arm returned sometimes – when I had done something repetitive. Each time causing me emotional and physical pain and taking months to clear up.
 
Lower back problems begin
 
At 20 I landed what I considered a really good job with an oil company. It was whilst working for them that I first experienced lower back problems. One Sunday I was cleaning my car, using buckets of water carried from inside the house. That evening I noticed the right of my lower back really ached, and it was painful when I leant forward.
 
I woke up the next morning to find I could barely move – my lower back was in agony.  This was the first episode of many that followed a similar pattern.  The first time it occurred was out of doctor’s hours and I went to the local hospital’s A&E department.  Getting me out of the house, to the car, into the car, and out of the car into the hospital was so painful.  I remember being in tears.  After a wait of several hours, a doctor told me not to do anything too energetic, like horse riding or dancing, despite me showing her that I could not move my torso forward by even half a centimetre without being in staggering pain.  I took the painkillers she prescribed and was amazed the hospital seemingly couldn’t help with what I was experiencing. It was a earth-shattering feeling: when you are experiencing incomprehensible pain for the first time it is a really scary thought that going to the people you expect to understand, empathise and help will not provide any reassurance or support.
 
Becoming friends with my local physiotherapist
 
After several bouts of back pain I established a good relationship with my local physiotherapy practice and often saw the owner who seemingly had a long list of tricks up her sleeve to help relieve my symptoms and point me in the direction of recovery.  That is where I headed every time I had problems, which I did several times a year.  Luckily, I was earning enough money to be able to afford the sessions. The company I was working for bought me an ergonomic supportive chair which helped, and I learnt ways of keeping myself mobile and methods to treat myself at home when I was experiencing pain.
 
My 20s saw me visiting this physiotherapy practice, which often seemed like a lifesaver, hundreds of times. I often heard the physiotherapist bandy about the phrase "hyper mobile", but I didn't really understand what it meant. 
 
I adjusted my lifestyle to cope with the things that seemed to go wrong with my body – I tried not to carry anything heavy (carrying shopping home would inevitably result in me pulling the muscles in my arms).  After trying ten pin bowling once I never did it again, and when an attempt at a golfing driving range to please my partner left my arms in agony for several weeks I realised I couldn’t do that again! Out also went tennis and badminton. I knew that I couldn't write for long lengths of time and invested in some voice activated software along with an ergonomic keyboard. These never seemed like hardships, just "the way it was"; much better to avoid the problem in the first place than cope with the weeks of pain and recovery.
 
A neck problem that would change my life
 
10 years after the initial occurrences of these symptoms, I started training to teach the Alexander Technique. It was something that interested me from both a physically and philosophically, and as a technique often used to correct muscular-skeletal problems, I figured it could only be beneficial to my own issues. Ironically, it was whilst studying here that two new muscular skeletal problems hit me, the second of which resulted in me quitting the course and traversing the darkest and lowest points of my life.
 
The first problem was with my right knee. I tore the meniscus inside my knee joint when I was squatting down to take something from the fridge. My physiotherapist suggested a knee scan, and the consultant was keen to operate. I had an arthroscopy in June 2007 – where the torn part of the meniscus was taken out. The consultant also told me later that he found a fair bit of deterioration in the lining shielding the knee joint bones from each other and he had ‘smoothed’ the area over.
 
Whilst I was having physiotherapy treatment in summer 2007 to aid my recovery from this operation the old problem with my right arm reappeared. I tried a new physio at the same practice – she suggested some neck stretches which I conscientiously did over the summer. I was noticing some pain in my neck with one of the exercises, but continued with the stretches, because I had been told to do them by the physio. Looking back I should have stopped them. The pain signal from my body should have alerted me, but I’d had so many problems that I trusted the physios more than my own body’s signals. The pain increased until one morning I woke with severe, burning pain down the right hand side of my neck, over the top of my shoulder and under and inside my should blade. I had never experienced muscle pain like it.
 
The depths…
 
This was the beginning of a problem that was to dominate my life for the best part of the next 2 years. At its worst, for a period of 6-9 months, I could not get through a day without lying down to rest my head as I could not physically hold it up without my neck muscles going into an awfully painful spasm. Both sides of my neck had painful muscle spasms every day and the muscles burned constantly. My shoulders ached with random pain that I could find no relief for. Holding or manoeuvring something as light as a cup of tea would cause problems in the muscles involved in my arms.
 
I became scared of moving my head as everything seemed to cause me pain. I was unable to go outside and had to stop the Alexander Technique training course that I was doing – as it meant travelling into London everyday, something far beyond my capabilities. I spent every day at home, either in bed resting my neck, or with my neck wrapped up in a large scarf, sitting doing static actions like watching TV or reading from a book stand. Managing to do the crossword became the highlight of my day. My life was like this day in day out for over 6 months, I became terribly depressed; contemplating facing the future living a life like this was horrendous. I came to dread the morning – that time when, a milli-second after waking, the consciousness of my state hit me. I remember my stomach falling through to what seemed like the depths of hell.
 
At this point various physios were saying a myriad of different things to me. This plus the fact that the problem started after some exercises suggested by a physio, meant I completely lost faith in anything anyone was saying to me. I saw a rheumatologist in London who prescribed me plenty of pills and recommended taking high doses of paracetamol in addition to these. He passed me to a highly-regarded osteopath, whom I saw for about 3 months – he had me wear a soft collar around my neck for support – I had this on for about a month. He manipulated my incredibly stiff upper spine and loose neck. His manipulations of my thoracic spine left me in agony for weeks with burning pains on breathing – still to this day my spine between my shoulders has a curved shape which appeared after a manipulation session here. After 6 or 7 sessions he declared that he’d never seen anyone as bad as me; someone who didn’t recover, and saying that he didn’t really know what else to do!
 
I’d been doing some personal research on hypermobility and at this point I decided that pursuing this was my only option, although I wasn’t sure that I’d ever get better. I fought to get a referral to a hypermobility specialist in London, and from there was referred to a physio who worked specifically with hypermobile patients. I had little faith remaining in health professionals and felt as if this was my last shot.
 
A new approach
 
This new physio gained my trust. It was a big job, as I was scared to move my head even a fraction and was holding it in the same position most of the time. I remember being terrified of doing what she was asking, but based on my research it seemed like this was my last opportunity for help. This relationship heralded a significant turning point for me. Slowly, together, we got me moving again; she explained the whys and hows, and guided me step by step.
 
I worked with her from May 2008 and after a couple of months I was moving my head again. The progress was painstakingly slow but my dedication to the work total. I used a physio ball to strengthen my core,  a small ball under my head to get my neck moving and elastic bands to strengthen my shoulders. For the first six months I spent at least an hour every day doing exercises. The recovery was anything but linear; sometimes I would take steps backwards – trying too hard, doing too much, being unlucky. But over the longer term I was making more steps forward than I was backwards – and each of those steps added up to a positive, progressive journey.
 
At the same time I was taking steps to improve my diet and lifestyle which resulted in my losing weight. I improved my nutrition and lightened the toxic load on my liver. I don’t underestimate the physical and mental effect of these changes to my well-being.
 
I stopped seeing the physio regularly in late 2009, after nearly a year and a half of treatment. I had incorporated much more ‘normal’ exercise into my daily routine (particularly walking and cycling), but I still continue with some of the specific exercises to increase and maintain my core strength and my shoulder muscle. My life would not be the same without my big green inflatable physio ball!
 
Today?
 
So how am I today? I still get pains – but they are a different magnitude of intensity. I still have a delicate neck, a stiff thoracic spine and a weakness in my lower back. I guess they’ll always be there, but I’m aware of and informed about my hypermobility. I've learnt about and trust my body more. The things I have learnt have helped stop and severe reoccurrences of pain. Importantly, I’m aware of where I am not as strong and have adapted my lifestyle and exercises to fit around this. These few adaptations are nothing compared to the freedom gained through a body where I manage the condition.
 
In addition, I’m eating a diet that is free of any form of processed sugar and processed grains as well as really high in fresh, unprocessed food. Making these changes – which have brought my tastebuds alive – has been life-altering; I’ve never felt lighter, more agile, healthier, more mentally clear or happier with my food. The variety of foods I eat ensures my system is flooded with life-enhancing vitamins and minerals. I also get good balance of essential fatty acids. Not only has eating this way seen me effortlessly shed almost 3 stone but not eating processed foods gives my body’s elimination system a chance to work efficiently, meaning all the other vital systems in my body can work without extra effort too. I am convinced that this has only done good things for my muscular-skeletal and overall immune system and cannot underestimate the effect that this must have had on my hypermobility related pain.