I got diagnosed with Ehlers Danlos in 1991 but I’d waited some time for a name to what was going on. Of course, like other sufferers, I realised that I was different before then. My inability to do simple tasks, my awkwardness and breathing seemed to infuriate most around me. Not to mention how I actually looked and behaved.
Taller than the boys in the class, skinny with knocked knees, short dark thin hair and a smart arse attitude, I was called a Tomboy by the other children and the teachers. I would get in fights and got the ruler for being bad in primary school. I would run away from home at six years old for the first time. I could run so fast that I thought I could fly but only on grass. I always had scabs on my hands and knees from falling over.
The pain that I felt in my joints, my cough, the vomiting and not being able to see properly were symptoms that everyone suffered, to some degree. I had already spent time in hospital with a strange rash and vomiting. I knew not to moan. So, with this in mind, it was not until I was older that it was realised some of my problems could be corrected.
At twelve years old I was given eye glasses. Spectacles were the first ‘fix’ for me. They would also be the only thing that actually worked. Excited, I ran into school saying stupid things that must have sounded strange to my occasional friends.
“I can see the leaves on the trees!” I’d say loudly to anyone who’d listen. The walk into Derby Middle School the day after I got my glasses is forever etched in my memory. I remember the amazing feeling I experienced and can still see every tree that lined that driveway in my mind.
Before glasses, I saw green blurs on top of a brown blurs, which I obviously recognised as a tree. But, being able to appreciate the beautiful detail of the branches blowing in the wind, the leaves shining in the sun or rain; all whilst sitting on those brown, weathered, sometimes gnarly, trunks rooted to the earth is still awesome.
The glasses didn’t help my breathing problems and my nose would be forever ‘pinched’ until thirty years later when I privately had lazer surgery to correct my sight. However, throughout school I had national health glasses. As soon as they came out I got a loan and bought contact lenses.
Ehlers Danlos has made me the Queen Chameleon. I switched directions and changed my life around so often I feel I may now have a split personality. Being diagnosed with a Personality Disorder isn’t as dramatic. But realising how much EDS has affected my life choices is rather disparaging and enlightening.
I started well, Co-op Amesbury then Lloyds Bank Amesbury. My job’s weren’t so much the problem as where I lived. My house share was up a steep hill. In the 1980’s things were tough financially and I’d walk everywhere. I hadn’t learnt about low impact shoes. My right hip and lower abdominal pain were too severe to cycle. I could not afford to take time off.
So, when a young soldier, Kevin, fell in love with me and wanted me to move back to his home town with him when he was released from the Army, I gave it my full consideration. He lived with his parents but we would soon get our own place. I got a transfer through Lloyds up to Longton, in Staffordshire, moving in with Mr & Mrs Woods and their son.
Unfortunately, for me, just as I turned twenty years old, my soldier threw me out. He helped me get a room in a shared house and left. More unfortunately, I contracted shingles and got quarantined. Even more unfortunately the antibiotics had stopped my contraception from working.
The doctor hadn’t commented that it was unusual for someone so young to get shingles. Surprising, as it is a painful condition normally seen in older people and those with central nervous system issues. Regardless, I’ve never been comfortable in a bra since as the blisters went around my rib cage. I recovered officially, but found I was still suffering with cough, sore joints, stomach pain and wooziness.
Whatever was wrong with me meant I couldn’t physically get on the bus and travel the eight miles to Longton town centre to Lloyds bank. I was almost passing out. My situation was that I was about to become homeless. I adapted to suit and found a job where I could sit down during my shift and not have to get up again – it paid similar money but wasn’t Lloyds.
I became the part time Box Office Cashier for Ritzy niteclub. I could walk to and from work as it was close. There was no doubt it was much easier than what I had been doing at Lloyds. Life eased up for me a little. The adaption had worked. But more than that, a life had opened up for me where I could dance.
Whilst I’m dancing, particularly when I was younger, I feel little pain as long as I keep the range of motion short. My flexibility seems to love motion. My hips snake around in their joints and there is barely no effort needed for me to move in rhythm. I’d knock off work and dance until the club finished, an hour, then walk home.
At Ritzy my hours got cut, I had to find more work to cover my rent and heater in my tiny room. It took fifty pence coins. I’d often be cold and hungry. When you have EDS you are always cold. It’s almost impossible to regulate your temperature. Work wise, I had to take what was going. I found work as a canvasser for a double glazing firm. Yes, I was naive – didn’t you work that out yet?
Quickly realising that four hours pounding hard pavements every evening made my back feel like the spines had been put in the wrong way around and the noisy big toes that used to get me in trouble for sneaking down the boarding school corridor, started behaving like they had hot wires bound tightly around them.
This time I was lucky, the administrator for the office was about to go on maternity leave. I quickly offered myself forward and was accepted for the job. Again, I could sit down most of the time and found the job easy to get along with. Unfortunately, the original owner of the job wanted it back and within five months I was searching again for work.
Being up in Stoke-on-Trent had been an easy enough transition for me but there was no reason for me to be there so when I saw a job for a live in chambermaid being advertised down south I thought I’d apply as it would give me somewhere to live whilst I searched for better work. I packed up everything and got a friend to help me move back down south.
Oh boy was I wrong. Chambermaids work very hard and need to be exceptionally healthy and fit to do their work. They also need to be focused at 6 am and with EDS that is impossible. With EDS your stomach is still digesting yesterday’s meals and the phlegm is catching in your throat for at least two hours. I often vomit first thing. I remained undiagnosed so had no idea why I was struggling.
After my shift I slept and never was able to do anything to find alternative work as I was stuck working and recovering from work. It’s not well paid and accommodation is not as warm as it needed to be. Things were taken out of my hands when a hotel resident decided, along with the managers, on a ruse which included me cleaning rooms whilst the resident was still in the bed, watching.
It is not a surprise that I move from Richmond, Surrey to where my parents had settled in Plymouth. I’d forgotten how supportive they were. I gain employment immediately as a Box Office Clerk at the local Ritzy – thankful for franchises. Unfortunately, my parents are unable to cope with my hours and I was asked to leave the week between Christmas and New Year.
A colleague at work had a spare room for rent and for several months I work at the night club as they get me a taxi ride home. I walk into work from Steve’s cottage, six miles along Mutley Plain everyday, as I’m still passing out on buses. My hips benefit from white Reebok trainer shoes and I start to build muscle around them which helps keep them in place.
Whilst sitting on the box office I get offered to do amateur modelling work. I embark daily trips with photographers and friends. I secure some professional work but realise that my actual limit for standing was just under nine minutes before feeling woozy. The painter Robert Lenkiewicz immortalises me all the same. Capturing my twenty year old youth and battle to stay stood up.
Then there is an incident with a manager at the Ritzy and feel that I have to leave. I am offered part time work at a bar called Fanny’s where I learn the bar trade and am introduced to a life long friend Mac. Finally, I secure a full time assistant manager position at a bar on the Barbican and argue with the manager over my nude modelling.
He rightly pointed out that I was too tired to do my job. Although there was no real evidence that I had done anything wrong. I had made the mistake of admitting that I was in pain most of the time and was looking for something easier. He thought, rightly, that my dedication to the pub was under question.
I was made to chose between them. Ruby Wax had just interviewed me for a TV program she was doing for BBC 2. I chose modelling. I was working my week’s notice when I met my first husband. He asked me to marry him. I said yes and, quite frankly, surprised the pants off him and everyone else. He was not a rich man but he had a flat.
Vince and I got married by special licence within a week. He introduced me to cannabis, Pink Floyd and street education. Finding cannabis was a big turning point for me. It really helped with the stomach cramps and most of the time it also calmed my painful joints – yes, I’m aware there is a joint meaning there.
I joined the local model agency and started Promotional work. Work was selling Gucci in department stores, hair salon modelling, appearing in the local paper as Plymouth’s Star Girl was one of the highlights.
My marriage to Vince was not going well. I was desperately unhappy. In Plymouth town I passed out again and got diagnosed with Endometriosis. Just after my twenty-first birthday I tried to commit suicide for the first time. Vincent was a heroin addict, I used that excuse to leave him.
I ran to an ex boyfriend, in Brighton, for comfort. I wanted to be looked after and cared for. I fell for his lies as I knew that he loved me once and I him. I wanted to believe. But, I was from the wrong side of the tracks for his family. I found that he was seeing someone else and it was just a ruse for a quick shag. I found myself starting again.
So, it was in hilly Brighton that I finally got a doctor to listen to me. Dr Chung sent me to see a Rheumatologist and I got diagnosed 1991. I was twenty-two years old. I was told it was not treatable but was assured by Dr Graham that, as long as I was cautious with my movements and stayed as a super straight model, I would be okay.
He affirmed my suspicions of needing low impact exercise and banned me from cycling and tennis as I had been continually injuring myself regardless of the splints and straps to try and hold the joints in place. He warned me of slowing down and encouraged me to continue to dance as often as possible. He was aware the condition was very painful but did not mention any lung connection.
Doctor Graham told me that I would slowly lose my extra mobility. Professionally I had made the crossover from model to selling of my actual body. An easy transition to someone who doesn’t think a lot of themselves and wanted to find out what was wrong with them. I’d used the money for private consultations and to find my birth mother to see if there were any medical anomaly there.
My self esteem was surprising low considering my situation. Working full time for a respectful model agency and part time in a bar. I still went into prostitution. Turning down a full time modelling contract from London based Modelling Agency Storm, I felt I was in no position to be offered such role. If only I’d realised what I had already achieved and was capable of.
I still don’t know why. Self confidence and the fear of not being able to physically do it, fear of letting people down. Fear of the unknown. Also, how would I afford London? I could barely afford my studio flat which was painfully on the 4th floor of a tired old block of rooms. I’d not made any real money through modelling so was scared of moving again and not being looked after.
Not accounting for the toll it takes on your soul and body overall – which was not factored in by me at the time, escorting seemed like a good idea. To be able to work for two hours and earn the same as working for thirty-five hours.
I was able to give up the pub work, I found a nicer flat near work. I learn’t to drive and got a car. It all made my life easier but actually the cost of keeping it running would mean I was hooked on hooking, whilst still working full time in the model agency. My pride wouldn’t let me give up my ‘real’ job.
I was dying inside and learning too much about our society for my own wellbeing, for anyone’s wellbeing. My decisions to make my life better seemed to be getting messy and my hips and back were struggling with many aspects of life. Having to walk about in high heels all day and then get impact hammering at night time was painful.
A situation arose where I was offered to purchased the model agency. I found a backer and did so. Selling it on again immediately in order to raise some fast money and went travelling. Fearful for mobility in the future I decided that I needed to travel ‘now or never’ style.
Not being able to use public transport without becoming giddy or vomit meant I had to do travelling differently. My decision to drive my car from Brighton to Israel was because I had Ehlers Danlos. I’m grateful for that choice for so many reasons. I saw a part of Europe that the tourists rarely do. I drove through Europe in my Talbot Horizon with my dealer and my milk man. It was an experience.
On the way to Israel my fellow travellers and I stopped in Austria, Innsbruck to be exact. We did the tourist thing and climbed the mountains. I gritted my teeth against the hip and toe pain for the climb. However, the higher and colder it became the more my chest tightened. Eventually, I couldn’t breathe and had to stop.
My mountain experience ended with waving good bye to my friends and not being able to talk whilst I sipped hot tea in the cafe with the old folk. I was twenty three. I sat in that tea room with tears in my eyes praying no one would ask me how I was. My friends came down from the mountain with photo’s of each other sitting on top of the world.
Back home, in England, returned from travelling I found myself four months pregnant. I had been on the pill so it was a surprise. I was advised to abort but didn’t. My life over the next few years was children orientated. I’d give up the ‘extra’ work and concentrate on my children and building something solid for them.
I stayed with the modelling for years until I could no longer stand up straight. Building a successful model agency and starting to branch into talent and film extras. My firm was involved in some very well known productions and famous singers had models from my agency in their videos. However, I was in agony and really struggling to keep a grip on reality.
The doctors performed a hysterectomy for the Endometriosis. A device they implanted at the same time to save time in theatre wouldn’t allow me to straighten up properly. Although, at the time, I thought it was the Ehlers Danlos not liking the amount of sitting down I was doing. I struggled to teach the evening classes, I struggled to go along to meetings and to talk with clients.
I saw a Hypermobility specialist under the NHS. She told me that there was nothing they could do about my back and that if I didn’t change how I lived I would be in a wheelchair sooner. I cried at the consultation and was very distressed. The consultant couldn’t understand why I became upset. I couldn’t understand her lack of sympathy, I didn’t know which way to go, I was already very active and very thin.
I made a mistake at work. My self esteem wouldn’t let me see it for what it was. I felt I was not in the role I deserved even though I’d worked so hard to become one of the best agencies. Rachel Hunter called me and offered me a great opportunity on her TV model show but I turned it down saying I was too ill. I then closed the agency and had a break down, I almost lost my children to social services.
I took stock of my life for a year and just tried to feel better and find a new direction. All the doctors were suggesting I needed to exercise more and get healthy. I don’t have enough energy to exercise and work so I realised I needed to combine.
Deciding to go back to college and retrain was easy. In my late thirties, now with two children, I went back to college to study Electrical Installation. It was a win win for me at the time. I was able to wear work boots with orthotics inside to help keep my knees and hips in place. Being able to release long and very painful wind was also a major factor in my decision to go into construction work and no one expected me to stand up straight.
It was hard work, but not as hard as being a chambermaid. I built and used muscle. I spent the next four years of my life as an electrician until I could no longer stay up safely on a ladder and work. It was the satisfying work I ever did and the best paid. I would have done it forever should my body allow it.
My GP sent me for a spinal scan because I was having problems walking. He sat me down with my partner, at the time, Mike. He told us my back was twice the age I was and that I could no longer pull cable.
Dr Thacker said I not work as an electrician safely and should find alternative work. It seemed that my ‘getting hard with it’ attitude to Ehlers Danlos bit me back bad and rather than avoiding the wheelchair had taken me a step towards it.
Bric and Brac was my next big thing. Buying bulk and selling on the internet. Then I sewed cushions and made jewellery whilst trying to get gigs singing. I was able to sell my home made jewellery online and on a market stall, I even did the market stall with my wheelchair towards the end of me physically working.
My latest adaption is not going out much at all. Generally because it’s real hard work. I am learning to write. I’ve written one book, I need a publisher for it and am working on the second. Unfortunately, I work on a keyboard with no w button so it could be easier but I think I am moving forward. I quite like my wheelchair it enables me.
My GPs have been more accommodating since I started looking ill and vomiting constantly ( and have the scan to prove the shadow on the lungs). I have a nice Fentanyl patch and a Hormone Replacement Therapy patch. They both help me deal with the pain. I refuse to take too much more but have numerous other painkillers for ‘breakthrough’ pain including Oxynorm.
And this year, they started treating my lungs. I got prescribed a drug which helps break down and get rid of the excess phlegm. It is rather annoying they waited until I was so old and in a wheelchair to give me such a life changing medicine but they got there in the end. I now have the pleasure, that I understand most others have, I can wake up not feeling nauseous.
The consequences of the new drug are that I have more energy and am less fatigued. So, taking advantage I put the music on. I have been able to dance again, only short amounts, but dance all the same. I became a little exited and have started walking to a few places and even managed some stairs in a reasonable time. Then my toes started triggering and cramping ,as too my legs.
I will need to adapt again. Elhers Danlos keeps me on my toes, painful though they are and for that I have found the grace and goodwill to be grateful. Would my life have so much colour, would I have so much to reflect on if I didn’t have it? I could equally argue at how far I would have gone if I didn’t have a life of pain?
However, one is where one is. DNA is reality. There is no beating a collagen deformity, it’s just one of those things. You can’t see it. No one can see it. Like a mental illness it can only be found by a professional. Because of it’s invisibility I can pretend for a short time that I am anything I want to be. In my heart I’m capable.
The trick with Ehlers Danlos is believing that your new path was where you always wanted to be. That each path taken was necessary. So far, I believe I’ve learnt something and grown from my experiences. Let’s hope so because I’ll be drawing from them when writing.