Watch “Dr. Hance Clarke, MD PhD FRCPC | The UHN GoodHope Ehlers Danlos Syndrome Clinic” on YouTube

Ehlers Danlos is a Battle with Fate.

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.

Disabled Living in Beautiful Hertfordshire – Ring of Finite Burden

Grab yourself a cuppa for this one and settle down for an informative read. I’ll try not to be too boring. I warn you that I will go on about my medical issues for a while but then it becomes more relevant to any disabled persons in general as I will discuss the housing allocation service and benefits. Thank you for reading.

One of the main points of this statement is to say we do not have a housing shortage. We have corruption within our councils regarding allocation of housing. This is on a huge scale and the councils are aware of the problem and are hiding the fact they are incapable of monitoring the housing associations and different groups given access to our social housing stock.

Admitting I claim full housing benefit and Universal Credit in Hertfordshire is a risk. There is a real disgust of disabled people and anyone claiming benefit. Every eighteen months or so I fight to keep my Personal Independence Payment although I do qualify for it on many different grounds.

I’ve not always been this disabled. I used to run a modelling agency in Watford. Appearing on TV with famous people like Jodie Kidd. Strutting my stuff and showing teenagers how to do the walk. I got huge debts, mental health issues and had some medical physical problems. Eating disorders were becoming fashionable and I fell out of love with the industry, it had to close.

I didn’t stop working though. I retrained at West Herts College. Becoming a qualified electrician, I now hold City & Guilds certificates in electrical installation and engineering. I have toiled alongside men from all around the world whilst on construction sites. I helped install electrics on projects such as the Samuel Lithgow Youth Centre in central London.

I’m now going to be big-headed and also claim that I can read music and play the guitar. Having mainly taught myself I’m not great but I have performed in Charter Place and Watford Pump House singing. A woman of many talents and master of none.

I can no longer do any of those things. Medical devices put in me to save time in theatre at Watford General Hospital and through St Albans City Hospital have caused an autoimmune response. It affects my eyes, ears and maybe the reason I can’t even shift simple fungal infections. Dr Hextal, I’ve spoken with other patients of yours…it’s not just me and they too have the strange fungus.

The devices are causing a great deal of pain. They are around my bladder and rectum. I’ve been complaining about them since they were put in, in 2002. I wasn’t informed at all about the Stapled Hemorrhroidopexy and have never really recovered. It’s been a slow decline. The last few years involving giving up work altogether, now sat on full benefits because the NHS refuses to do anything other than get paid for not treating me.

I wasn’t really suitable for the devices. I was born with lung disease and a very small defect in my heart. I have an underlying condition called Ehlers Danlos and had extensive endometriosis before the hysterectomy. There were no follow ups for either devices fitted, no follow ups.

The NHS trusts just moved me from one hospital to another. Thankfully I found a TVT bladder sling support group on Facebook and became a little more informed. Now I am angry. Doctors never swab me. However, they have been eager to examine the area physically regardless of my pain level. Now that I refuse examination this is noted on paperwork clearly and is always mentioned in letters.

My nhs medical files are huge and I look incredibly ill on paper, but if you saw me on a good day, unless I was in my wheelchair and/or using my stick you wouldn’t know. I present well. I put my best face on however, I rarely leave the house.

I haven’t had a good day this year yet. It’s March. It seems silly but I cannot stand any pressure on my body – shoes, tight clothes etc So I prefer to sit in very loose clothes at home near a loo. If I go out I wear a large pad. The NHS will not help with the cost of these so they are used sparingly.

I’m heavily medicated with Fentanyl and OxyNorm but try not to take too much as my mind is the only thing which works – well, as long as I have HRT it does work. I was told this week, by my chemist, that because of Brexit the NHS has run out of my HRT so I’m in a rush to write this lol.

I have to argue for most of my medication and have given up asking for certain prescriptions. I suffer from POTS when I’m not well. Any sort of physical effort can cause faints. So even pushing out wind can make me pass out, so I must keep my pain medication as low as possible for my own safety.

I moved recently to a lovely new home. I wasn’t able to climb the stairs in my old house. The situation had become quite sad. My wonderful daughter helped me move my bed downstairs. I could then get myself something to eat, answer the door and look out on the garden.

There was a toilet downstairs with a tiny hand basin. As I had a downstairs toilet it was considered to be ‘level access living’. As both my children had left home, I requested that I be downsized to a smaller property as I was falling foul of the bedroom tax.

I wasn’t using upstairs; three bedrooms were lying empty. Occupational Therapists, Care Workers and my doctor wrote reports supporting the move. I was put on the bidding system. As I was under fifty, I wasn’t eligible for a bungalow.

The bidding system was strange. It was only accessible online. You could only bid via a computer not a phone. I could bid on what they put up for me to bid on. I put a bid in for a one bed flat opposite my GP. I waited eagerly to hear if I would be moving to something smaller and more manageable. I got turned down because I owed £73 rent.

I phoned Three Rivers District Council to complain about housing allocation, I was told they didn’t have a line for that. I asked if I could complain over the phone about how I was being treated. I was told they don’t have a complaints department. They have 160 staff. By law they should have taken the complaint down on the phone. However, I did follow their rules and after much effort produced a fair and reasonable complaint.

Three Rivers District Council made me email the complaint to their enquiries line.  The council upheld the position that I didn’t need housing… I got to complaints stage two before giving up. Health and housing situation just took their toll on me. It was also very embarrassing. I felt that the office staff would read about my complaint. I was just trying to move into a home more suitable for me and challenge a housing benefit decision.

I was using the Homeswapper page, for social housing tenants and was on the council bidding system. Eventually I did find an exchange, outside of their systems, on Facebook and moved home.

Giving my three-bed house to a very lovely family who had been stuck in a two bedroomed flat was a good feeling. They were overjoyed. Some families had offered me money to exchange with them, the situation desperate – but I felt if you are able to offer me thousands of pounds why do you need the property? I’m judgemental like that 

In total it had taken me two and a half years to move home. I was pleased to be away from Three Rivers District Council but I didn’t want to leave South Oxhey. My daughter is there. As soon as I moved into my new home they put an eviction notice on me because of rent arrears. I tried to point out I’d just moved in.

Universal Credit payment didn’t come straight in for my rent. It had been misallocated to another rent account before getting into mine to pay the rent. WCHT knew the reason for the late payment but still attempted to evict me. I think this action was appalling. I am thankful to still have a roof over my head.

Thankfully a charity called HertsMindLink helped me. I ended up paying an extra weeks rent but at least I’ve still got my home. Although they are refusing to remove the order which doesn’t feel very secure, I’ve called discrimination against disabled people. They didn’t accept that. 

I worry if I were to go back into hospital. I must stay well so I can fill out the forms, so I dont’ lose my home. If you don’t phone in for your benefits they will get stopped. You have to be ‘proactive’ for the current benefit system under Single Fraud Investigation Service.

But disabled people are supposed to be Protected Under UN Convention under Anti-Discrimination and Equality Laws. These laws state that any organisation over fifteen people must provide access to facilities and services for certain protected groups.

Disabled people are one of these groups. As such they are to be given assistance in achieving equality. Funding ought to be allocated accordingly by Governments and Local Authorities. The UK ratified this treaty before EU law and as such sits within The Equality Act 2010 in UK law.

For instance, ‘Age’ is a protective group, as is ‘Disabled’ and ‘Race’ – so it is appropriate for our local council to send out extra literature to ensure that no one is being discriminated against when they go for housing, education, healthcare or any other service with the borough.

Extra literature may be printed in different languages or leaflets sent around old folk’s homes to ensure they have access to a complaints line, healthcare services and leisure activities within the borough. This ensures their quality of life mentally, socially and physically.

Article 6 specifically deals with women with disabilities. It says clearly, they should be given specific consideration.  Disabled women fall under ‘Disabled’ and ‘Sex’ brackets of protection under the same laws as a non-English speaking, disabled person who would come under the protected status of ‘Disabled’ and ‘Race’. Some disabled women fall under three or four categories as they may be old and English not their first language.

Generally the laws are used to stop discrimination and ensure equality for everyone living in the borough (and those ‘visiting’) with services and facilities.

Watford Borough Council tend avoid the term ‘Sex’ and use the word ‘Gender’. I will continue to use the term ‘Sex’.  Gender in itself is protected under the laws for those whom have undergone sex transformation.

Councils do have to prove that they are monitoring the services they provide. This ensures that equality laws are being adhered to. So when I look through the councils reports and see that they are not making any allowances for disabled people to assess housing, I feel concerned.

The main areas of consideration for extra funding has gone towards ‘Age’ and ‘Race’. This isn’t me being paranoid, you can see them yourself as they are still up on their council pages. I’ve done the research.

In June or July 2014 TRDC implemented a plan to catch fraudulent claimants of housing benefit. It was called SFIS or Single Fraud Investigation Service. The scope of the experiment was to catch people claiming housing benefit illegally. It was put over all HB claimants, disabled people were not excluded.

It was just after the implementation of the bedroom tax in 2012 who to any single mum with children coming and going was a nightmare. They put the rents up the area. The job centre sent my son for work at UPS they gave him a contract for full time work for 15 hours. UPS and government think that 15 hours is a full time job – that is why employment figures are down.

My son had trouble giving me anything for keep as his journey from South Oxhey to Watford took up most of his pay. I had to prove all this. I was continually under investigation. Being asked over and over again for the same information.

I wasn’t well but I was running a little market, one day a week. Also I tried to bring in some money by selling things on ebay but it wasn’t enough to cover rent and live. The council would not make up the shortfall, but according to their rules they should.

Then the council told me they had overpaid me but I knew that I had told them every coming and going. I knew I had not claimed anything fraudulently but they are making me pay it back. It has bugged me that this amount, in total £3500 has gone down as me claiming illegally.

Since they implemented the SFPI the council have found a few fraudsters. There were higher value frauds discovered before the implementation though. Now the council are doing single fathers and mothers for hundred pounds of fraud. Before they were catching whole families and council workers who were creaming off thousands. Last year they clawed back just £400,000.

However, one benefit assessor in London was able to get away from over £1million. So why are TRDC concentrating just on housing benefit claimants? Newham council are investigating a £9million housing allocation fraud instigated by some of the council workers themselves.

My benefit assessor was Jan Dobrowolski. Who is Jan Dobrowolski? The only person around here with that name seems to have died in 1975. His grave is in Welwyn Garden City. Perhaps the police could look into that?

It all makes, what is left, of my sphincter grate.

The only Jan Dobrowolski I can find online who could have a link with the council works in mathematical modelling at Leeds University. He has heavy links with Ireland and Pakistan. Could it be the same person? The one thing this ‘scientist’ is working on is the ‘ring of finite burden’. Coincidence? It would make a good spy thriller!

There is something smelly in Three Rivers District Council and it is no longer me as I now have access to a bath. There is something smelly in Herts County Council and Watford Borough council where the housing and facilities are concerned.

But right now we need to make sure that equality rights for disabled people and women are upheld. By doing so we are really protecting the most vulnerable amongst us.

 

 

 

Past Caring, Not Sharing

A Space in My Time.

by Samantha Harris.

So, I woke this morning still in a scene from ‘I am Legend’. It was the scene where the mutant is head-butting the glass to get to the last human. The last human contains the antidote to the mutancy that has destroyed every other human. The last human is stood in an isolation containment tank.

I imagine that I am the mutant. It is me banging against the glass. The thickness of it shattering outwards from the impact of my head in spangled spikes. Each time I’m withdrawing, slowly walking backwards, concentrating on the human inside the glass, viewing the enormity of the task, before dropping my chin, focusing my eyes and running back at it, shattering another layer.

I’m slowly breaking through the glass. It is very thick.

The human on the other side is screaming. She has her hands against her cheeks and her eyes are wild with fear. She is also me. What is this dream saying? I pull back the covers and make my way through to the lounge. I sit down at my laptop. I’m sat at a table in front of a window so large that it takes up almost the entire wall, I start to write. The nodules on my swollen hands hurt and the pain shooting up from my rear is distracting. I have Ehlers Danlos syndrome.

I spend my time between two windows. One window to see the environment which surrounds me, the other to see the environment which surrounds you. I sit looking out on the world. I rarely close the grey blinds. I need to be able to see the skies. I will see them coming. And I have my superfast broadband and trusty laptop to help me circumnavigate you. I fight my battle on more than one frontline.

I cannot help myself. I cannot stop being angry. This is the reason why mental health can be a problem. These days it is rarely about depression. Why would I kill myself? Why would I even self-harm? I’m in pain every day with an incurable disease. Not killing myself is self-harming. It seriously would achieve nothing other than to hurt the humans I do care about. And, anyway, what if killing myself didn’t change my actual existence? That would be typical.

I’m angry at the world. I’m angry with myself for ever being young, subservient, ignorant and now unable to follow my own dreams. I will, no longer, use a capital letter for father, mother or god. Why should I? I’m subservient to no one. My anger manifests as revenge plots which I would not act on. It disturbs me that I spend so much time thinking of these plans.

Ideally, I would hurt others. But who? Who is actually responsible? My natural mother? My step mother? My father? The Courts? The first man who found me sexual at seven? The second man who found me sexual at ten? My madam? My second husband? My GP? Religion? Multinational corporations? The list is endless.

I do fear those flying unknowns. The triangular ones in the sky. Not the invisible religious gods. The real ones in the huge ships with the hatches and symbols. They are looking. They are waiting. What do they plan as they move invisibly and silently across our skies? They fly by when no one can see. When I look out and just see cloud, I imagine them lurking behind. On a damp, rainy day they sit, adding weight.

My partner comes into the room. The atmosphere frosty from an unspoken argument yesterday. I attempt to discuss it in a clumsy manner. It doesn’t work. He collects his things. Have I gone too far? I make tea, stirring and dropping in milk. I think, briefly, about when he takes me. I mustn’t look at him when he is really close. If I do, his blue eyes disappear, replaced by sharp black ones which dart from side to side and scales appear as his skin peels away. His tongue is replaced by one which has a split end. It flicks my face. My human’s beautiful face goes, only returning when I close my eyes and desperately blink away the image. I know it’s not real. It’s an image seen whilst modelling in a tiny, studio in Chelsea. My confusion isn’t any easier to live with knowing it isn’t real. Let me explain.

Years ago a famous fantasy comic artist showed me something. I was sworn to secrecy but as promised dues still go unpaid, I see no reason to keep it secret. To be frank, swearing me to secrecy wasn’t helpful. Not all images give me issues, the majority I can usually educate myself through.

I don’t blame the artist. How could I? How could he know I’d be forever haunted? Or that my brain would do whatever it is doing? He showed me the private work because I told him I’d seen a spaceship. I had. He was riding high on my naivety and I suspect my interest was stroking his ego. The work he showed me, was fantastically brilliant.

There were large grey reptiles with huge copulatory organs engaging with human women drawn across the page. The women’s expressions neither terrified or happy. I viewed only for a moment before he, sorry for showing me, quickly covered it up again. It was long enough to see several intergalactic pairings across the huge paper, they stood in strange positions, strained expressions on the upstanding lizards’ faces.

I was disappointed, at the time, that the spaceship in the background was only depicted by the presence of metallic stands as the scene was happening underneath and looked nothing like the spaceship I had seen. It was merely his imagination.

Robert Lankiewicz is another artist whose sublime, realistic work is also thoroughly entwined in my thought patterns. His stories, paintings and image play often in my head. His death lays heavy on me, feeling responsible only part down to my paranoia.

Now that my mental illness is enjoying a little freedom these images are becoming alive. Why some images more than others? I’ve no idea. Over my years as a model I’ve worked with fantastic artists and painters. Perhaps now they taunt me because I cannot be distracted, no long walks, no longer able to sing or play the guitar to cheer myself. The autoimmune response to a medical implant means I cannot even abide listening to music.

It’s been over thirty years since I first started getting reality and fiction confused. I just deal with it. I’m just writing about the first few minutes of my day.  I have been diagnosed with ‘unstable emotional personality disorder’ and ‘post traumatic stress disorder’ as well as ‘depression’. Personally I don’t think they’ve got me pegged yet. Thankfully I have started writing and it is an outlet of some sort.

Perhaps waking up imagining your bashing your head against a glass wall with yourself on the other side is exactly the same for you. Perhaps you have also seen a UFO and your lover morphs into a lizard. If so, I’m glad. We will be prepared when they do arrive from the skies. If not, then I hope this little slice of my life will unable you to humour the people in your life who may be struggling with mental health issues.

Past caring but not past sharing

Stitched up so far, The Famous UCLH

So I learned how to spell, pronounce and the meaning of a new word today.

Recto enterocele is a bit of a mouthful and it’s meaning is full of implication.

It was discovered by my Gynaecologist – at another hospital, during a Laparoscopy, looking into the vaginal mesh implant I have and examining my ovaries and bladder. My ovaries were okay, a few adhesions but some draining and slicing left them looking healthy apparently and my vagina, , tubes and pelvic area looked healthy according to notes and following letter but as I mentioned, I do have recto enterocele. Not sure how I can look healthy and have this thing but that’s what the letter says.

It seems I’m unlucky in medical terms. I don’t have easy things to fix. Mainly because they tend to cross over between medical disciplines. A recto enterocele involves the bowel and the vagina. It isn’t an uncommon thing. I have had all the symptoms for over three years now. It is not rare for women to have these things so I’ve no idea why I’ve been left in pain so long with it.

And here’s the rub. I’ve actually been under Gastroenterology and been continually waved on by my consultant. Only having to manage to stay being seen by her with arguing with her staff to be seen and complaining to the hospital about her lack of attention. I’m due to see her tomorrow. I’m anxious.

Let me tell you about her clinic. I was desperate to get to it for starters. I’d been in another hospital for ten days being sick and losing weight quickly. They hadn’t worked out what was wrong with me but as I had an appointment with this clinic which was supposed to be specialist in my Ehlers Danlos connective tissue disorder it was felt I should be discharged into their care.

It was felt I needed a colonoscopy at least and other investigations to get to the cause of the vomiting . Was it linked to my constipation? My stomach itself was fine other than peptic ulcers and gastritis. Which, although unpleasant, not usually known for causing constant vomiting. Major nausea and rib pain. Also having blood and mucus in my poo and even pushing out a fart being excruciatingly painful.

I went to see the clinic at UCLH and Dr so and so. Initially things went okay and the Consultant seem to understand what was going on with me and arranged some tests for a return visit. On the return visit I had to undergo a strange lecture on how the anus works and the important of correct food etc. I explained that I had qualifications in nutrition and biology and although appreciated I didn’t understand how showing me a diagram of the bowel working correctly was particularly helpful in my case.

I did voice my concerns and explained that I had seen a nutritionist at the hospital and that my diet and lifestyle were not responsible for my sickness or extremely painful bowel movements. The male foreign nurse did not understand English very well and I felt is was just something I had to get through. I was happy that my daughter was present as I felt he really didn’t understand or choose to ignore what I was saying to him.

To be fair I was feeling grateful, I was told that some tests were being arranged for me and I would here in good time and return for the tests. Some weeks later I returned for the first of three tests arranged for me. This was a balloon test with an electric probe test. I made the mistake of attending on my own.

There was a woman present during the test. I’m not sure what her role was supposed to be but I felt she was not a compassionate woman as I pleaded with her to stop him from continuing the test as it was so painful. It was the male nurse who I had seen previously. I didn’t feel confident that he was doing the test. He seemed unable to communicate to me what was going on. I did ask him to stop the test. I felt that he did not listen to me at all. I was left crying, upset, and bleeding from my rectum. I was told it was my own fault for the bleeding as I had a sensitive anus.

I was distraught after this test. I found it very difficult to attend the next ones. They were badly scheduled too with only a week or two between them. One of them I had to try and poo in an MRI machine. yep.  No, I couldn’t do it. I started throwing up in the MRI machine and got taken out of there in a wheelchair I became so ill. I hadn’t had enough time to prepare and empty my bowel properly before they put up the jelly I was supposed to poo out. Also just pushing my anus in an outward movement really hurts so much that vomiting seems the only way my body knows how to handle that sort of pressure.

The other test involved eating loads of metal objects to see where they were in a weeks’ time. Guess what they were still all in me! Slow transit for sure! So one test come back with results which meant something to me as the other tests were not able to be completed properly as too painful. But no. I did this test just a week before the poo in the machine test….where was the sense in that ? If after ten days the metal bearings are still inside me how was I supposed to empty my bowel in the week before the next test? Then knowing I have problem emptying my bowel they pulled me in twenty minutes before the scan due time to ’empty my bowel’….the pressure was immense.

Anyhow, I needn’t have worried. It seems that I had nothing wrong with me. The tests showed I had no problem pooing in the machine (remember I didn’t actually do this as I got removed from the machine as I was vomiting) and that somehow all was fine with the balloon test and electro probe tests results too. There was no mention of any set of tests or scans being a problem for me. None.

So, this means that, whilst I was telling the uncompassionate male nurse that I could not feel the ‘electric pulse’ only pain that this is a normal occurrence perhaps. Even when he moved it around in my arse and I could still only feel pain and repeated would he now stop. Even when he moved it a little deeper in I could only feel pain to the point where I snapped at the female nurse in the room whether she could hear me as he seemed to not be able to…he then stopped. All that was normal stuff it seems…..

When the consultant met with me to discuss the results and recommend bowel retraining program I was so shocked I didn’t know how to respond. I did the bowel retraining program. I saw her afterwards and again voiced my concerns about the level of pain and that the scan results seemed suspect and that I didn’t understand the balloon and electro probe results. She dismissed me on this again but agreed to send me to see a neurologist to find cause of vomiting and also check on some heart test results which had shown I had a very low blood pressure level, which could be why I pass out. She asked me in an annoyed fashion if I would like her to actually check that there was no damage to my rectum after I voiced concerns that she may be missing something. A rather uncomfortable rectal examination followed where she told me that there was nothing wrong. I felt a little silly.

I’ve been back to the mental health services. I thought maybe I was making it up or somehow I was making myself ill. And of course I’ve learnt how unlucky I have been over the last few months. It seems the TVT they kindly put in as an extra when I had  a hysterectomy is made from silicon.

I didn’t need it, my bladder was fine I had endometriosis and a connective tissue disorder. The TVT caused problems immediately. I lost feeling in my clitoris, had problems emptying my bladder on the ward after the operation and then slowly over the next fifteen years my sex life completely. I did immediately asked for help but was told it was other medications I was on and I was eventually diagnosed with interstitial cystitis in 2009.

Then last year I started reading about the TVT and it’s complications. Until then, from 2006 to 2017 I firmly believed it was what I was eating, drinking etc and my lifestyle which was causing my bladder issues – again seeking help from mental health services because I’m being pushed from one hospital to another attempting to find some relief.

I carry on being sick a couple of times a month these days and try to stand up for more than a few minutes at a time but the pain in my arse, back, abdomen and vagina conspire against me and my legs buckle. I sit and I move slowing to avoid passing out. I sometimes use a wheelchair, I often use a walking stick. I rarely leave the house other than to visit the hospital.

So tomorrow I go and see my Gastro Consultant. I will be armed with a letter from my Gynae saying I have rectoentrocele. I’ve looked up the symptoms and they are painful pooing, wind expulsion, blood and mucus. So I’m going to try not to be too anxious about seeing this so called specialist and then try and be a very patient patient.

She will probably say it’s a Gynae thing. I’ve yet to see my Gynae since the last surgery. So I’m unsure as to whether they will help as it may be a complication of the TVT although the tape itself in intact still thankfully.

I can’t help feeling what a waste of NHS money and my time and all the staff involved in the tests I had done which weren’t carried out properly. They could have been carried out in a way which would have worked I’m sure but the scheduling and the staff and her own attitude was rubbish. Three years and counting. Been off sick on benefits for the last two so I can’t help thinking that under the guise of ‘helping’ the NHS is doing more to make us sick.