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.




How Does a Social Housing Estate Work in Herts County Council?

I would like to know what Watford Community Housing Trust, who are a co-op, are doing about all the complaints they have received about the enforced housing development and the parking? Especially the lack of health & safety regarding traffic flow and parking on the Meriden Estate.

Munden View and Abbey View towers don’t look great from the outside but the flats are lovely. Ideal for me as there is no garden to be maintained, a rubbish chute, community central heating and dedicated parking outside. I love my flat but there are a few problems with the management.

They have disabled parking at the front. I am able to park and roll. I can wheel over the car park, through the electronic doors, into either of the two, newly refurbished, lifts and up to my floor. It’s all one level. It has a great view over Watford Mirror Print building, the GP surgery and I can see up to the Harry Potter Studio at Leavesden.

At the front of my tower block is a disabled space. Everyone parks in it, usually it isn’t a problem. Only over the past few months it has become a problem because of all the workmen using the parking and the increased housing stock. Residents and visitors must use the disabled bays as there isn’t enough parking, especially at the front of the towers.

The parking was adequate for blocks built in the 1960s when most occupants didn’t own cars. The 180 flats have just eleven spaces allocated at the front of the block.

There is also a yellow crossed ambulance bay – the one at the front is continually blocked by needy families or disabled people. Taxi drivers drive into the only available access and wait. They are waiting for residents who need them but just one car takes up the only assessible area.

A resident, desperate to get an ambulance to get to her sick Dad was trying to move the taxi. This causes friction. The issue is that the road was blocked so easily by one taxi. The waiting ambulance then started causing traffic problems down Garsmouth Way. This has major road works on which the residents already have reason to be unhappy about.

I often park around the back as there is no space at the front. It is security detailed by ramp gates and key fobs. I discovered I couldn’t get out of the car park because the exit ramp was broken and I had to just go back home. I called Watford Community Housing Trust.

The customer services assistant told me to use the entrance ramp but to ‘be careful’– I didn’t bother telling her I was disabled and unable to move that fast.  I felt she had given very poor advice for anyone. Ideally the entrance ramp should be left down if the exit ramp is broken. WCHT were considerate to then send me a text informing me that the ramp was broken.

When I tried to complain to the council about the disabled parking and ambulance spaces not being enforced, I was told that it’s WCHT land and their responsibility.  I spoke to the local councillor for the ward and was told that they’ve sent over eighty emails to WCHT regarding the parking for the towers and, also, about the lights around the estate.

Disabled people are 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 group, including tenants.

The UK ratified this treaty before EU law and as such sits within The Equality Act 2010 in UK law. It gives rights, in law, to certain groups. They are known as protected groups.

Disabled people are one of these groups. As such they are to be given assistance in achieving equality. Funding is allocated accordingly by Governments and Local Authorities. Feedback is supposed to be gathered for any services they provide.

I feel that Watford Borough Council should take it’s responsibility towards disabled people more seriously and uphold the law. We have a right to proper unrestrictive access our homes whether that is in social housing or private. We also have a right to give our feedback so services can be directed correctly towards those in need.

It appears to me that some simple changes could make a huge difference to traffic flow and parking on the estate. The towers surely must come under some consideration with its positioning between the M1 and M41 and having just one small access road. If an incident were to happen how would emergency services get to the location?

I would request a visit from the Health and Safety executive and the Highways Agency and their input on the access and parking situation. With special attention to disabled access and the ambulance bay.

As a last request could you explain to me why, when you do enforce a disabled parking bay with a ticket, in other parts of the borough, it’s only a £20 fine rather than the usual £60? This hardly sends the right message.

Yours sincerely,

Samantha Harris

Young Heroes Of South Oxhey

The Knights of South Oxhey

South Oxhey is council estate with an ancient tiny flint chapel right bang in the middle. Sir James Altham is buried underneath. He was knighted by King James I of England. I’m not sure how brave Sir James was but, on the estate, the courage that is represented by knights of the realm lives on.

Last week three boys helped rescued a woman from a burning car.

People caught up in a traffic jam on Prestwick Road were horrified when one of the cars started to catch fire. The Police and Fire Brigade were called but a woman was trapped inside one of the cars.

With no thought to themselves these boys run up to the car, pulled open the door with – to all accounts, “flames all around”, and pulled the woman to safety. The woman owes her life to the lads.

There were over 400 comments on Facebook saying well done to the youths but not one of them came forward. The lads didn’t do it for the fame. They did it because it was the right thing to do. They did so because they have the correct moral compass. Their families are proud of them and the woman was incredibly grateful.

The local paper ignored the rescue and wrote a piece on the woman getting arrested for driving offences. Watford Observer covered the whole incident by saying there had been a road accident and the scene had to be secured by the police and fire crews. That was it. South Oxhey residents knew there would be no recognition of the bravery of the boys. 

I offered to write this piece in response to the Watford Observer coverage which I felt was pretty inadequate for a local paper. Looking into it, the media like to pick and choose it’s coverage of South Oxhey. Perhaps they think this is necessary for the locals to believe they will benefit from the area’s new precinct and housing developments.

South Oxhey is being renamed South Oxhey Central and housing is selling for £250,000 a flat. It will boost council assets. Perhaps the newspapers will benefit, but whether it regenerates the little cockney haven without increasing facilities remains to be seen.

This huge social housing estate was the largest in England for decades, situated at the south end of Hertfordshire and inside the M25. I came across South Oxhey when I visited in the1980s. It was full of 1950s and 60s charm. The little shopping precinct had a Woolworths and Wimpy what wasn’t to love?

It was just after WW2 the government purchased the land to rehouse Londoners whilst London was being rebuilt. The estate build was only given permission to go ahead if it couldn’t be seen from -the posh – Pinner Road. The majority of the prefab builds now covered by outer brick shells.

The history of the land the estate is built on is fascinating. There are mentions of England’s first real Queen Boudica riding around the area with her daughters. A roman coin from the very first century found in South Oxhey lies in Watford museum. Last century the area was home to an American Airforce base that helped defend Europe against Fascism.

The local South Oxhey community aim to stay happy whilst the new development is being built. They help old and confused residents find their way around the battered, dusty precinct – they are essentially living in a building site but they stay positive.

South Oxhey locals generally just get on with it. The families on the estate have faith that the council is looking after their interests. They want to believe in good nature of people. They want to believe that the council is doing the right thing.

The local paper, currently the Watford Observer, should cover local news as well as it can. These little stories are important. Surely a community has some rights over how it is covered in the media?

In the meantime I’d like to hear it for the boys! They showed real bravery and courage. The lads who rescued a drunk woman from a burning car deserve to have their story told. Well done lads and thank you.

Are Women’s Rights in England being Torn Apart by Cultural Sensitivities?

Every day I watch women dig deep to just try and keep the advances we’ve made. It is a war. We are the largest minority. Our ranks are broad across all boundaries, borders, seas and mountains as well as every colour and culture. I always thought I lived in the country where I was equal to the men who lived here, I’ve kidded myself for years that by being British I am treated exceptionally well as a woman in my own country and we are, pretty much, equal.

These important equality laws that demand female and male be given the same rights are being broken. It seems that ‘cultural sensitivities’ are allowed to navigate around them. These laws which we are bound to uphold are seemingly not so important if the provision of service is supplied by someone claiming ‘cultural sensitivities’.

I’ve become interested in the housing law in our country, it seems that the equality act 2010 is being misrepresented. It isn’t just for race. This law stands to ensure that women and men are treated equally. After reading through the Chartered Institute of Housing for England and Wales I’m extremely concerned for the women of England and Wales as according to advice on the site – a lot of which is outdated – equality of women is not an issue. Well, it is.

I’m referring to a case of a young woman who entered into a housing tenancy with her partner. They had been waiting together as a couple for years on the housing register whilst living at his parents. After a very long wait and numerous interviews and proof of need they were eventually offered a lovely flat in Borehamwood, Hertford.

After viewing the couple met with the landlord to sign the tenancy.  As they went to sign the young woman noticed that her partner had put down as main tenant and that her name was put down underneath. My friend immediately pointed out what she thought was an error and that there were meant to be joint tenants as they were joint applicants.

The response was that is how they did it and that she would still have the same rights as her partner. During the viewing my friend hadn’t wanted to assert herself too much as the gentleman showing them around wasn’t able to look at her in the eye and she realised that she needed to be culturally sensitive to his obvious embarrassment at talking to her at all.

This sounds all well and good until last year when this young couple fell out of love and started arguing about who has the flat. The young woman, classed as vulnerable, has to leave as it is his flat and she is only living there at his will.

The circumstances of the individuals in this couple are very different. The man’s family home and other members of his close family are around the corner. He and other members of his family work for a large bank outside of the area. Whereas the young woman has essentially lost both her parents, has no family at all in the area and works locally and has done so for years.

This charitable community housing association called Tamil Housing Trust and also known as Tamil Community Housing Trust are updating their website but currently their profile, including the purpose to “provide quality homes and excel in the provision of culturally sensitive services for the Tamil community and other refugees and migrants through self-help and empowerment.”  also have some objectives such as “Do what matters most to residents” is available to view at http://www.tamilhousing.org.uk.

There is another statement about building TCHA’s capacity to respond to changes in the housing sector whilst considering the changing needs and aspirations of the community. This one I found particularly interesting as the woman’s needs suddenly changed when her boyfriend threw her out.

As they had joined the housing register together and both worked and both paid rent and shared the financial responsibility of the flat, she believed and was flatly told she had equal rights of occupation. However she has since been told that as her male partner is the main tenant, it is his flat and she will have to leave. It seems that Tamil Housing Trust lied to her and she does not have equal rights.

She has been to the Citizens Advice Bureau and been advised to start the housing application again as she doesn’t have any rights in this case. It is her that has to leave as her partners name is down as the main tenant. It hardly seems fair that a young woman who has worked in the area for years has to leave and apply again to be allowed to join the housing register whilst the man gets to keep the flat.

Statements seemingly harmless in nature by being so ambiguous along with their insistence that my friends partner go down as main tenant and she go down as his tenant gathers more meaning. Is it that in Tamil society a woman isn’t allowed to own property or have the lease in her name? Of course not, so why make a young British girl be homeless because the man who showed them around their property was culturally unable to view her as an equal?

They own 324 housing units across twelve London boroughs. They claim, “to provide high quality homes at affordable rents and offer culturally sensitive care and support services primarily to Tamil people on low incomes and with the greatest need in an economical, efficient and cost effective manner.”

They do not have anything relating to diversity or equality within their company profile and this worries me. The board is not diverse. This is providing housing for our most vulnerable people. They should be following laws not ambiguous ideals.

It appears to me that Tamil Housing do not ‘do what matters most to residents’ as they already made it very clear that they do what matters most to appease men rather than helping the young and vulnerable women of our country.

We need to stand up for our women’s rights. ce(/[a-z]/

Upton Road Mental Health Services

Upton Road, My Mental Health Consultation

According to both the docs I saw at Upton Road yesterday, I’m not mentally ill. I’m just dealing with a lot of difficult things and I am disassociating and seeing things because I’m so anxious, stressed and angry at the world.

I’m aware it is happening. Although I can understand what is happening, I am struggling to deal with the day to day manifestations. During my first consultation NHS mental health services they’ve told me they won’t be able to help me because I’m aware of my issues.

My angry is not the ‘right type’ of anger to be helped. After over two years waiting, two assessments and yesterday’s ‘consultation’ I was told unless I can find some funds to help with the costs, there wasn’t any help available. It seems being aware of one’s problems means you’re okay. I’m chronically ill. This complicates things because of medication intolerances, I can only take certain medications and usually only via liquid or skin patch.

I generally cope but the last few years it’s been getting harder. Admitting to stock piling drugs, plotting revenge attacks and wanting to slice my throat open with a glass smashed on the floor in frustration, is difficult, especially when you’ve just met. As was the case with this consultation. Feeling so close to really losing it will make you seem desperate, because you are exactly that. No one would share this stuff with people unless they had to.

So, I was reaching out for help. Shoot me. Surely, anyone would be ‘aware’ to do that? In fact in order to get seen by NHS mental health services you have to go and see your GP first, then attend an assessment and then wait for a consultation or treatment. Picking up a phone, or searching online, show a sense of awareness of a problem from the patient seeking help.

Let’s just say that the docs I saw yesterday were really correct and true with what they said. Why are the NHS mental health services treating alcoholism, eating disorders, transgenders, drug users and paedophiles? They are usually aware of their problems. I’m pretty sure they have to admit to their problems in order to get help. I’m sure some are forced into help but I think my point is made.

Previously I’ve been diagnosed with depressive disorder, ptsd, personality disorder and now I’ve been re-diagnosed with ‘unstable emotional disorder’ without any real time spent actually talking with me. I feel utterly deflated. Even something simple like writing to the correct GP seems beyond this clinic.

I would like to start going out again, become part of society in real terms. Not just online. My problems are so bad I cannot abide music or crowds, I cannot sleep well and have problems with eating as my throat is closed – apparently though anxiousness. I have impulsive thoughts constantly to do dangerous things. I want to lash out. It’s exhausting not reacting to the impulses.

I feel that writing this was more therapeutic than the time spent with the patronizing doctors who believed that I don’t deserve any help because I managed to drag myself into the bath, brush my hair and made eye contact.

Being able to see your life and sanity slipping away doesn’t mean it’s okay, it’s not okay. I’m not okay. Not being able to stand people close to you, even when you love them, is not okay.

Perhaps it really is that I am classed as mentally fit. If that is so then why would both these doctors say money would help me get the correct treatment? They agreed a psychologist could help but stated clearly that wasn’t available, in my case, apparently not provided on the NHS, but isn’t a psychologist mental health doctor? Who are other patients seeing?

I know I need help. It’s hard not to be paranoid that they are trying to make you worse. Perhaps they are trying to push you over the edge in order to earn more money when you become an inpatient? I joke but not really. These are my real feelings and emotions, constantly kept in check.

Last time I felt like this I ended up trying to commit suicide several times and ended up as an inpatient for three weeks. I really am desperately trying to avoid this course of action as I have people who care about me.

Where do I go from here?? I write, thank fully I can still do that. Maybe I’ll get super successful and be able to pay the £380 an hour to see a doctor.

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

My Twenty-one.

My Twenty-one.

When I was twenty-one, I swallowed the contents of a full Paracetamol tub and went to bed.I had made the reasonable assumption that my life would always be painful. There was no one who needed me. There was no one who wanted me. I was being logical and courageous. There was no call for help. No attention was necessary. All I required for the job was at hand. I knew exactly and utterly what I wanted.

My expectation was that it would be a relief to those that knew me. That I would be found sometime in the next week, having died peacefully in my sleep.

As far as I was concerned, there would be no one to inform. No funeral necessary. No one would miss me. Perhaps the local shop owner would chat about me for five minutes with a customer. Maybe the ladies downstairs, in the tea shop, would have a natter about me for the duration but I was fairly convinced that my death would go unnoticed and I would be unmissed.

There was small part of me which felt some would feel pleasure when they did eventually get the news. Those whose lives had been made difficult by my birth. They would be grateful for my decision. They would finally see me. They would see that I had understood. That I was a courageous, strong individual and that maybe, they would feel sad that they hadn’t known me very well after all.

I fell asleep super easily. A glass of wine helping down the powdery pills. I swallowed the rest of my supply of contraceptive tablets too. I wanted the sleep of the Pharaohs, only ‘at peace’ and smiling. I had zero intention of waking up. I had zero intention of carrying on with my woeful existence. My pain remained whatever I did or wherever I went. There was never any relief. I feared each morning and each night. Sleep, when it comes to those in pain, is such a blessing.

Going to sleep that night was the best. Firstly, the pain relief was good. There was a panic that I was suddenly quite well. But thirty-two paracetamol will do that. After all they are supposed to help with the pain. I slipped into a lovely sleep thinking that there would be no tomorrow. No pain to wake up with or to. My painful life would be over.

Three hours into my ‘forever’ sleep I woke. Sitting bolt upright I realised everything was the same. My image stared back at me from the wooden mirror. The old dressing table barely giving room to anyone wanting to pass. The chunky Edwardian foot of the bed hiding my view of the door. Nothing had changed.

I pinched myself. I was still alive. Then, like something from The Exorcist, I vomited over all the visible matter in the room including myself. I cried as I cleaned up the sickly stench of my failure. This one so unexpected but at least private.

In the bath I contemplated my actions and thought of other options. I had no other medication. I didn’t own a gun. I didn’t have a rope or anything to hang it from. It didn’t seem fair to jump from the window as people were walking by and could get hurt.

That would be typical of me to hurt others without even trying so I put my plans on hold and went to work instead. If an opportunity to discuss what had happened to me that night ever came up, I didn’t recognise it.

By Samantha Harris

8th January 2018

The Great European Toilet Debate


The Great European Toilet Debate

Straight Drop Toilet Bowl versus Ledge Drop Toilet Bowl (and it’s impact on Our Society).

Sorry if you found this whilst searching dirty jokes.

I will own up and hopefully save you valuable time. This is a piece about my hatred of the straight drop hole design. My preference is for the ledge and this is my explanation why.

When I first came across the ledge toilet, it was a shock. Having lived in England until I was ten years old, I had always assumed that the toilet bowl was a universally bad design that the whole wide world lived with the only other option being a hole in the floor.

The German toilet bowl features a ledge for you to deposit your aberration on. It gobsmacked me when I first saw it. I remember mother being horrified. In my opinion, and I have now spent over forty-eight years sitting on toilets and would consider myself an expert in the field, the ledge toilets are the better. The German toilet gives an all-round better toilet experience.

As I now live in the UK my toilet is straight drop toilet bowl design, so I deal with splash back daily. It freaks me. It annoys me more, possibly, because I know there is a better toilet out there. A more efficient toilet, a better designed toilet for today’s living.

The ledge enable’s one to either inspect and flush or just flush one’s excrement without looking. I preferred to inspect and flush, as this way I feel abreast about what was going in and out of my body. Another pro, for me at least, was that there was never any ‘splash back’. Splash back is something I continue to hate.

For those of you who are unfamiliar with ‘toilet splash back’. Let me explain. This is the action of the stagnant toilet water displacing as your poo goes into it. Usually this water is clean. However, it can be, on occasion, used. As your new poo deposit drops down the water splashes up. This can be felt by the person sat on the loo who deposited the poo. So, depending on the water in the bowl you could have dirty waste water or water containing detergent fluids splashing back up onto one’s fufu.

Now, I feel I need to interrupt myself to explain that I did some research. I have been made aware that not everyone has this ‘splash back’. Also, that maybe my poos are extra dense and that is making the splashback possible. I do not know. I need more diversity in my audience.

So why is it important to view your own poo? Should it really be looked at or just flushed away like the bad problem it smells like? Or could our very British attitude of covering up a mistake and being in denial of causing a problem to be aiding the continual preference for the toilet that doesn’t really show you what you have done?

The National Health Service in the UK like to use a diagnostic visual aid called The Bristol Stool Chart. This is a chart showing different colours, shapes and sizes of poo. They use this chart to help patients and doctors discuss results of treatments and medications. For example, if a patient had hard, small, round stools before treatment and then softer, long stools after treatment then the treatment did influence the bowel.

For this diagnostic tool to work one must be able to view one’s poo. My argument here is that is that with an SDTB it is extremely difficult to view the excreta. Once the poo lands in the water it tends to disappear back behind the U-bend, perhaps showing a glimpse but this is no indication of what the rest of the poo is like or whether there is blood or mucus present. Most of us don’t realise we have blood or mucus in our poo unless we are inquisitive enough to look at the toilet paper after we have wiped.

So, could our toilet bowl’s be making us sicker as a nation? I had a quick look at the figures and couldn’t find evidence to show this exactly, but it did look like there could be a percentage or two difference in colon morbidity rates, surely there is a point to be made here by someone who is better at maths than I?

Regardless, there is still the splash back. Detergent sat in the bottom of the SDTB can easily splash back up onto you. If it is bleach down in the water, one could end up with some lighter strands of colour amongst your pubic hair or maybe a chemical burn. I hate pooing into detergent. My attempts to wiggle my poo as it comes out, so it slides down the inside of the loo rather than the ‘big drop’ that would cause the unavoidable, to me, splash, usually fail. I am familiar with the toilet brush. I clean up after something I cannot see, have not seen and will never see. I only know the poo was there because of the trail of destruction left by its journey.

So how easy is it to get one of these ledge toilets? One of these toilets which stops splash back and makes one feel like one is dealing with one’s health? Not easy. They seemed to have fallen out of favour and one article I read told me that only older properties in Germany have these ledge toilets nowadays… How sad.

It seems people prefer not to know what is coming out of them. Most people, it seems, would rather deal with the splashback and maybe even deny that the splashback happens, than look at what they did.

I’m not a plumber so unfortunately will be living with my straight drop toilet bowl for the foreseeable future. And, as I also did a search online to buy one of these ledge toilets and found zero, I suspect I’m on my own in wanting one. Meaning, I will continue to long for a toilet without splashback and wonder what this all says about our society.

I am jealous and frightened of transgender women. But I may live longer now because of it!

As a natural born woman I am jealous and frightened of transgender women. But I may live longer now because of it!

Jealous is a strong word. It’s more envy. I just did a little research on the condition and within minutes I found a great treatment, clinic and medication and a huge array of doctors as well as support groups and laws protecting transgender or non binary persons NBP.

I met my first NBP in 1990 when I was 21 and living in Brighton, East Sussex in the UK. Stephen, a pilot, had been in previously with his family and done a modelling course at the model agency I worked at. He came into the agency again once he had transitioned. When he presented himself as Stephanie on his return I did the right thing and ignored the change. Being polite and professional was easy. I was more than a little in awe of them.

Stephanie was so brazen. Wearing sexy clothes during the day. Great wigs and make up. She usually hung-over too, so must have some form of social life, even if it was the ability to enjoy a bottle of wine alone. I can’t drink. But I assumed, rightly or wrongly, that these transgender women were definitely having a better life than I was! She was more confident than I could ever dream of being.

Brighton being the town it is I imagined that they were dancing away the nights and to be fair they didn’t appear to really work. I knew that the club’s stilt- walkers were often transgenders and when I went to London night clubs NBP would be present on the dance floors with their colourfully outrageous outfits.

Stephanie introduced another NBP who was pre op. Nikkie. Nikkie was on feminising hormones but essentially still a man. Nikkie wanted set of transitional pictures. So at her first photo shoot he had budding breasts and a penis. We did an assortment of poses with the penis out with the penis in etc – penis was never hard and the session was in no way sexual.

After her op Nikkie came back with her vagina, bigger breasts and great hair. We did the final pictures and I did try to help with her makeup but kept getting the cotton wool stuck in her stubbled chin. Embarrassed, I eventually just let her do it. I like to think that I took these things in my stride and if Nikkie is still out there she remembers it as a positive experience. I’m still unsure how I feel about it all. I do remember that I wasn’t asked.  Stephanie and I kept in contact.

Stephanie and I met again when I lived and worked in London in the late 1990s. She had become older and wiser basically, but was wearing female things –  nylons with court shoes. She hadn’t shaved her legs that day so the hair was matting on the inside of the nylons. I’ve seen natural born women doing the same thing. It looks bad, like squashed worms.

I also have my own, until now, private, issues towards gender. When i was very young before five years old I used to pull my inner labia out to try and make it a penis. As I got older, during puberty in particular , I tried to shove it all in again, desperate to try and make my genitals look like the dolls we used to have. But with inner labia falling a good centimetre below the outer labia that wasn’t going to happen. I hated my whole genital area. I never touched myself or investigated other than to wash very quickly – in case God was watching (oh the shame).

How I envied how these transgender women, knowing so much about their bodies and sex. In my father’s eye women behaved like women…they didn’t pick up tools, they cooked, cleaned, looked after children. For example both my sister and I had to do the dishes from before we were ten years old. Neither of my brothers did. When I showed an interest in working on the tools with him he would not have me in the garage.

It was no surprise that I decided on becoming a secretary and learnt typing and cooking skills. My school in 1984 would not let me do Graphic design or continue with the woodwork as I was female. To say I was disappointed with being female would have been an understatement but I got on with it and as I went on to became a mother I suppose I am grateful. In many ways I am blessed but it’s not easy.

So, as a female, I have had to deal with others being intolerant of my personal needs and stomping all over them all my life.

Also, as I was given up by my natural mother, driven into prostitution by poverty and child sexual abuse I have actually begged for mental health help. I’ve told them the truth. I’m angry. I want to get better. I don’t want more diagnoses = I want treatments. Coming off the antidepressants was the best thing for me. The brain fog lifted. I started researching. I found no help for me or others going through much worse.

When I found the gender identity clinics in the UK I felt cheated. When I found out that they get 40% of the mental health funding I got suspicious. Seems like something is wrong there….when I rang the rape/sexual abuse crisis line I discovered that the number on the shiny lip gloss was only good for Thursday evenings between 7.30pm and 9.30pm.

So my envy is not, in my view, ill placed. I felt even more justified when during my research I found that transgenders tend to be living longer… the combination of good health monitoring and hormone therapy is prolonging their lives. I was fascinated.

The very next day I contacted my GP. I’ve now been on the patch for five weeks. I feel great. And I have my envy at how well transgender people are treated within the NHS to thank for it. Now that the brain fog, continual chills/hot flushes/flashes, nausea and memory problems have cleared I’ll be insisting on that mental health help too.

Oh I’m angry. Real angry.

I’m updating this post as I decided after another wasted visit to the Upton Road adult mental health unit to discharge myself from mental health services. Four years waiting for treatment was doing me harm.

The HRT and this blog have saved me from acting out on my anger, it’s important to understand how beneficial these hormones are to our mental health as well as our physical health. Let’s make sure that there is enough hormone replacement for all.


Edited as I’ve now come off HRT. UK national health service kept swapping brand, amount of dosage and the breast clinic wouldn’t take me seriously over pain and cysts whilst I’m on the HRT. All very disappointing.

Open Letter To My Step Nana

 So who is it that is filtering your letters? Is it your solicitor son? Is it your daughter, my step-mother? If they feel that not telling me where you are and how you are doing is the right thing to do then they seriously need to look at their moral compasses. However, I accept that they feel that you need protecting from me for some reason.
I recently heard you had dementia and that they have moved you to a home. This explains why you didn’ t respond to my last letters. Nana, I’m so sorry I had to remove myself from my upbringing in such a way that the distance was always necessary. Between distance and poverty my visits were few and far between but the love you showed me grew in force and lives in my genes today.
I’m not interested in money. You and I spoke about it when I was a little girl. See I’m not the biological grand daughter. Not being my Mum’s daughter made it easier to understand why she treated me the way she did. You made me see that in a forgiving way.
So when the rest of my siblings got an early inheritance twenty years ago (yes I know) I didn’t say a word to anyone about it. Nor did I feel any differently about you because you still took the time to know me and be concerned about my life and then my children.
Family estrangement being like a piece of catgut string which has been stretched to atomic dimensions. It’s lines of attraction become so thin it’s impossible to see the connection but the pull is still there. Contary to how they, my parents, sign the seasonal cards I’ve not spoken to either of them for decades.
I recognised that it is a good thing Mum did for me. Introducing me to and allowing me to know her fantastic mum. Strong, beautiful and independent. You lost Granddad early on and never remarried. Never even had another love interest.You then worked through to retirement. Successfully buying your home and securing your future and helping to secure your childrens’. A perfect role model.
As a child, I remember running across the road for you to get your fags. No 6. Blue and white packet. I remember walking into the smoky, sicky, woody, alchoholly, smelly, Falstaff pub to get those cigarettes like it was yesterday. Doesn’t feel like it was over forty years ago.
You were made to stop smoking years ago but it still defines you. I expect that you have your face on too. You taught me about beauty. You taught me that people like to be able to view something pretty.
Your protection of me during Mum’s rages will never be forgotten. I can still feel the relief. The safety of being around someone who didn’t hate me. I have missed the loving feeling and your brutal honesty. I loved feeling I had someone on my side.
Nana you would love my Grand daughter. She makes my heart happy. She is delightful with gorgeous green, shining eyes and a gorgeous smile that shows the world the love she is shown daily. Izzy brings me such happiness that sometimes I really feel like I’m going to burst. Often I’m wiping tears of happiness just watching her.
Strong willed with fine, curly hair and a very generous nature. They’ve called her Isabella but I call her Izzy. Izzy and I are real pals. Partners in crime. Her mother, my daughter, looks on at our antics with a beautiful smile of grace and love. The madonna for sure. I am blessed in many ways. I’m now able to be the great Grandma you and Nanny showed me to be.
Thank you. I was and always will be grateful x

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.

Moved from the Pretty Brick Cage

Funny how a house can feel like a prison to one person and a dream home to another.

So I just moved out from my three bedroomed, end of terrace house in a small close to a two bedroomed flat at the top of a tower block. When speaking to people about the move, and a lot of you do have an opinion on this, many cannot fathom why I have done it. Following is my attempt to explain and generally write why I did it.

It was nice to have a garden but it is nicer to have a great view which is always changing and goes on for miles! Before the move my bedroom was in the lounge in the house, I was able to view the garden every day, all day. Things to do change in the garden. The changes happen at a pace which is sedate to say the least. I spent almost two years living in the front room. It was cold. It was noisy, as it backed onto  a main road – plus it was a new build house and as we all know sound travels far too well between neighbouring walls! On a quiet day you could hear the neighbour pee.

The garden, although gorgeous having a cherry tree and an old crab apple tree within it, had lost it’s appeal once I’d seen it go through all the seasons twice. By the time I left, I knew the regulars. There was Fat Pigeon and a robin who would come to wrestle over any pickings with various other pigeons and robins who would come and try their luck. But Fat Pigeon and Robin knew the garden. When the children were younger I knew the garden, but looking out on it with a neighbour maintaining it for me and myself not actually experiencing the feel of it. I did lose the love I had for it.

Fat Pigeon and Robin were good story fodder for the Grandkids but were not entertaining on a minute by minute basis, for starters they were pretty unreliable and pretty much ‘fair weather friends’ too. When I left the garden it was as sad as I was. It needed the family back. I recalled the trampoline and picnic bench where the old broken shed and remains of green house lie now. The happy times.

Now the garden is gravel, easier to maintain. As a grassy garden the dogs would come back into the house with half the lawn between their claws and then innocently distribute it around the lounge and disperse it gradually around the house. As I grew sicker the dirt became an issue. I battled with the dandelions, next door’s ‘mini’ conifer tree (it grew to over 12 metres) and dog poo for a few years before I decided to gravel it.

As I turn to look into the house I can now remember the laughter, the parties and the family fulfilment which was finally mine when I had my own children. Now that I am gone I can feel that. Those are the memories I will cherish and hold on to.

When I was in the living in the lounge I could only remember the terrible things which befell me in the house. I had a bad State of mind. I was so low living like that, I couldn’t use the bathroom every day, it was upstairs. Thirteen steps. Just thirteen steps. Even typing this now brings my mouth down at the corners thinking of crawling up that grey, wool, well worn, filthy carpet, when I could for a bath.

And then once in the bathroom trying not to think about the thing you don’t want to think about. Trying to relax in a room where something happened between you and your ex-husband.  An attack that you didn’t tell the children as you didn’t want them to know how bad it really got when the divorce started going through. The lovely silence as your head slips under the water whilst washing off the shampoo. Beautiful silence.

I was classed as having ‘downstairs living’ as the house had a downstairs toilet with 30 cm sink. Which I was grateful for.  Although I lost count of the times I hit my head on the damn thing. The move from upstairs , to the lounge was a happy day. I could now access the kitchen. Reality was I had given up the bathroom (essentially giving up social life as I was to become paranoid about smelling ) to have easier access to the fridge.

My bathroom now is opposite my bedroom, about five paces from my bed. The bath has handles on too. This old tower block is serviced by two reliable lifts, both going to my floor.  The main entrance has this wonderful key fob electronic opening system – no heavy doors to try and pry open on day when I’m struggling. No garden, instead I have a small, totally private balcony.

Here, the privacy is amazing. I havent put any window coverings as no buildings overlook the block. In fact, being almost at the top, I’m pretty much the highest person in my town. The houses look like models from up here, cars are the size of a finger nail. The new build houses I can see from here look too close to each other too. I felt that of the house. The house opposite to mine was about 20 metres away. Towards the end of my tenancy I felt like I lived in a gold fish bowl. My neighbours were all decent people but I couldn’t even throw up without the whole street knowing! Sound travelled too well in that little street.

Right now it’s been one month since I moved home. There is now a reclaimed feeling from my past. As I move around bare footed on the warm floor,  or run a bath with unmetered, communual hot water or just simple luxury of using the rubbish chute I actually feel like I’m on holiday and this is my holiday pad.

So don’t think I’m bonkers for giving up a big house and downsizing to a high rise. I want a home which facilitates my life not imprisons me with it’s high maintenance, costs and memories!

Don’t Lie

The slap hit her, skin and air sounding, Sam flinched as the pain travelled across her face.

"Don't lie to me. Tell me what that face is for" Sue repeated.

Sam tried really hard not to cry.  Soon she was disappointed in herself as she could feel the tears, stinging, as they slid down her cheeks. Her brown eyes darted from side to side. She tried desperately to gauge what Sue wanted to hear. She knew she needed to do better. Come up with something that was reasonable.

Although only eleven years old Sam had learnt to try and circumnavigate her step mother's temper with humility and flattery.

When Sam spoke she remembered to raise her head, she hated looking into her step mother's eyes but she risked getting another slap if she spoke whilst looking away.

"I'm just missing home." She said. " It's been such a nice weekend. I hate boarding school. It's horrible being away from you. I'm sorry I had that face on."

Her voice was shaky but she felt the words had been delivered with enough honesty to be believed. In reality, Edinburgh school was the only safe environment she knew, the weekend trips home were emotional torture often accompanied by violence. Sam concentrated her efforts on staring at the tiny red veins running along the surface of the whites, on Sue's watery eyes.

"Oh well, that is good. It's good that you know, that you are better off with us." Sue paused briefly, before handing her step daughter a killer emotional blow.

"So, you wouldn't be interested in your biological mother? I'm not saying she wants to see you. She hasn't bothered with you for all of your life so why would she contact you now? I'm just asking, if she did happen to come along how would you feel about it?"

Sam looked away from Sue. Had her step mother just mentioned her real mother? Sam fantasied about her real mother secretly. Usually a taboo subject, there were so many questions she wanted to ask.

The resemblance between Sam's sister, Lisa and step mother was very strong. Their friends and neighbours always commented how much they were alike. Sam longed to know if somewhere in the world there was someone who looked like her.

However, Sam's flattery had triggered something in Sue's memory and unguarded, said "I remember Lisa's father begging me to marry him."

Wow thought Sam as she continued to keep her face downwards as her step mom told her about her sister's heritage.

"Nana and I had a huge row when I fell pregnant. Nana threw me out on the street as I didn't want to marry the father. He begged me. I said no. I knew he wasn't the right daddy for my Lisa. Things were different back then. I was expected to marry him."

Sue was most certainly proud of herself, but Sam, after mention of her real mum, was only half listening. And although the words coming out of her step mother's mouth would be remembered forever, Sam was incapable of full comprehension at that moment. So, she responded where she should, her head spinning, attempting to adjust to the deluge of information she was receiving. Sue continued, totally unaware her step-daughter was in shock at the confessional boast.

"When I met your Father that was real, you know?" Nodding at Sam, who smiling through tears, was still sitting, listening from the floor, concentrating her facial expression into one her tormentor would like, and nodded back.

"Your Dad didn't have that choice with you. He had to take you because there was no one else. He chose to love Lisa and take her on as his own. He's a good man. Lisa doesn't need to know. It's good you know how lucky you are. If I catch you pulling faces at me again I will tell your father. And Samantha, don't lie."

Capable But Hopeless

So yep it’s been weeks since I last wrote. But, to be fair, that is what it has been like in my written journal too. Nothing going on. However, that does not reflect my life currently. I have plenty going on.

So this week has been quiet compared to the past month or so. That is mainly because I’ve had some marvelous days away. I have a great friend and lover whom spends so much time out of the country so that when he comes back he likes to treat himself. Now he is a generous person to be sure, as he also treated me and his mother, but I did get an email earlier saying he may soon get his phone cut off.

The places where we visited wouldn’t normally sit near the top of any compiled ‘places to visit’ list but we did.

Firstly, (how bad is this? I just had to reach for my diary to find out the place name as I’ve forgotten it already) Southwold, East Anglia. Very nice. Coastal, and near nothing of importance but obviously loved by those who live there. Some of whom we met and had dinner with. The hotel wasn’t much so I’m not going to bother to try and remember it’s name. It did have a huge mole problem which I really hope gets sorted for them soon.

Now the little restaurant which we had pleasure to eat in the Southwold was something to write about. It’s location was surprising and there is no way anyone would find this place unless they were told about it before. Even if you knew it was there you would have to look twice to realise there was a charming little restaurant inside the shabby exterior.

The Sole Bay Fish Company is definitely the place to eat. From outside you see a collection of wooden shacks next to old fashioned harbour.  When you get closer you get to see the glass of a massive fish tank which opens up to a market type set up which opens up again into to a handsomely sized eatery where one can see the other side of the glass tank that is at the entrance. If we had younger children, who had needed entertaining, they would have loved this cosy, efficient, and much loved restaurant.

Being the fussy eater I am. It wasn’t the first choice for me. I’m allergic to shellfish so couldn’t partake of the oysters but they did look suitable horrifying. I had some smoked haddock and thoroughly enjoyed it. I loved everything about this place. Even the fact I had to leave the hut and trek to another to go to the lav didn’t upset me. Fully worth the extremely bumpy road and out of the way location.

Okay perhaps I’m not so capable. Very tired now. Write again later.

Putting your money where your mouth is.

Well I finally did it. I almost forgot that I had done it, Whilst transferring savings to cover an Iceland shop I saw “wordpress” £36 and then I remembered that I had bought a blog space. It was not a quick decision, buying the blog, I’d been thinking about it for ages as I find it easy to type.

That is many thanks to Mrs Summerbee from  Durrington Comprehensive School and two years of typing lessons. I do love handwriting but let’s face it we are all getting older and anything easier physically works for me. And although pens are great these days I still cannot help myself from pressing too hard on the page and ending with familiar throbbing hands.

I have, for the last thirty-five years kept a diary, a journal. Mainly as a release of emotions that I had no one to share with in life. My journal was a way of offloading all the horrible thoughts in my head that I could not convey to anyone else. Sometimes it would be pages of moaning about pain, physical pain, sometimes it was about my emotional pain over parents, family or friends.

My journal was accepting of me. I needed that. I still do. Not so much now that I have a faithful and generous lover. One can never underestimate the effect of being alone can have on ones mental health. Remember that one when telling your friends that they are better off on their own.  Having someone who wants you in their life is one of the best feelings in the world.

My mother had left me as a one year old child with my Aunt and never came back for me. My father, having remarried, came to get me to live with him and his new wife and her little girl. I spent the next thirteen years being their eldest daughter.  As an adult I learnt to fake confidence to get on in society but would still run to my diary to write my deepest secrets and thoughts.

One of the few regrets I have in my life is the destruction of several years of diaries when I married my first husband. One of those ‘new beginnings’ situations. Throwing the history to the fire to start afresh, as if that history didn’t happen. I regret it as it did happen and now I don’t remember it all. None of it. I just have the feelings of the memories which are bad. They are dark feelings. However, I know for a fact, during those years there had been good times. I like to write an upbeat account of my day if possible. Now I regret not being able to look back on the years up to twenty one years old. Thankfully, as I said, I have few regrets.

My written entries in my journals have become few and far between the last five years or so.  This partly because of health but mainly the realization that I will die one day and someone will have to decide what to do with all my diaries. I looked into it and discovered that people are able to leave their diaries to the The Great Diary Project so that is what I will do with my written ones and well this digital version, who knows, maybe I will just disappear into oblivion lost in the digital world. Does it matter to me? I don’t really know.

Why do I still want to write a diary? No one has seen them to date. I have spent so much of my life trying to fit in and be normal that it is maybe time to explore the extraordinary life I have really lived. I do have a unique perspective. I left home at 17 years old and have managed to survive in the world without any family support. I’m 48 years old now, I think. I accidentally celebrated my 42nd birthday twice and as a consequence am now quite confused about how old I am.

Whatever, I have paid my money so I have to do it now. I have started my blog. Forgive me.

We're the sum of ourselves.

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