Category Archives: Ehlers Danlos Syndrome

The Game – poem

Are you a nun or a whore?
Did life promise more?
Fantasy of black and white
Knights in shining armour, bright?
Keep me fed, warm and secure
Steel cuddles in the night

You need to get back in
Where do I begin?
The world will fall apart,
but then so is my art.
How can I concentrate in all this din?
Just start at the start
Yeah? Tell that to the wall
Where I crawl
Staring at the height

My dreams like Ninja Warriors
See all and glide
I jump over the obstacles and more
Why should I be motivated?
I dig deep, explore and tell you all
Waiting as the world ignores
And then I’m back on the floor
Wondering why I go back
And attack

So I’ll get my head in again
Bleed my heart out for random friends
Playing on the tubes of time
Looking for lyrics and rhythm
Desperate to connect
Pull myself from the depth
Instead I’m picking at the foundations
Scraping nails beneath
The peeled, red crimson relief

End.

By Samantha unextraordinarybint Harris

based in Watford, Hertfordshire, United Kingdom.

Fighting with my mental heath.

Contentment Amid Chaos – Walk Along School Lane. Journal entry/differently abled article.

Today, 20th October 2021.

 

My fear and insecurity has been attacked by a severe bout of fear of missing out, forcing me into action. Last night I managed an hour at my local Pump House open mic night and still managed to attend this morning’s dentist appointment.

Another tooth must be removed but I’m out two days in a row. Celebrate the small things.

Not wanting to return back to my tower block flat and with the sun sitting low in my windscreen, I drive to the end of Falcon Road. My god it is a beautiful day today. It’s a moderate temperature, the sky is cloudy, there is an intermittent gusty wind and bright bursts of orange light greet me as I drive towards the location.

This Bridleway/public footpath has been here for hundreds of years, at least. When they built the M1 out of London the new road cut straight across the old. This tunnel is big enough for two way traffic and has side pavements. However, it is closed off with no access for cars leading to or from it.

Parking near the entrance I can access the wood on the other side without walking too far along hard (bad for my condition) pavements. Perfect.

The sound is amazing as I go under the motorway, away from the housing estate, I feel a sense of leaving something behind. As I tentatively walk up the muddy pathway which is surrounded with trees clinging on to it’s sides, two cyclists come hurtling down towards me.

Grinning with delight, mud splashed men with red faces and sparkling bright eyes pass me after I move out of the way and continue freewheeling. Standing in the softness of layered pulped leaves I watch them flying down the hill and into the tunnel until out of view.

Further up, I catch the sound of someone behind and turn to see a man running towards me. I move to the side allowing him to pass. He looks happy in earphones. I continue to the brow of a hill around a sweeping bend. There is gate where I rest and look out across the field before me to the motorway. Through the trees I can see the trucks, vans, and cars speeding along. It’s a work day.

Then I find myself crying. Soft, hot tears.

I cry because I’m happy to be outside, by myself, in the forest and have overcome. I thought, at one time, a few years back that I’d not leave my wheelchair again. Now, alone in the woods on a beautiful day, I’m walking, with a stick, gently along a leaf strewn pathway. Quite the lady.

Is it better to have lived and lost or lost having not lived at all? I don’t know who said that but it sure is an interesting question. My envy at cyclists and runners, which became anger for a time, gives way to my own wonderful memories of running and cycling. I smile through my tears.

As I cried it started raining. Composing myself I walk again. Movement in the forest opposite catches my attention, and I stand watching a gorgeous bird busying itself just metres ahead. The Jay with a brown hood, black and white wings with a touch of azure blue on them darted about. It’s large beak was full and it stared back at me through the thicket before moving out of sight when a man and dog appeared beside me.

“Good morning” He said, walking by.

It was at least 12.45 but I still replied,

“Good morning”, and smiled. It doesn’t matter, does it, what the time it is?

The rain was leaking through the tree’s canopy as I walked back along the footpath. The man and dog are soon out of sight and replaced with another. The first man had been accompanied by a white terrier but this gent has a brown cocker spaniel. The cocker, intrigued with some grass on the verge, is making his owner hang around like a suspicious youth outside a shop corner. I do like dogs and miss mine terribly. The man and I smile at each other as I pass. And, for some reason, I also smile at the dog.

As I walk back through the underpass loud barks attack my ears, amplified by the tunnel. One woman being dragged a large dog and another being pulled by a small collection of dogs were barely controlling their charges. The dogs, barking at each other, led their owners past me. The women laughed, I laughed.

I feel so happy I could burst.

Sighing heavily, I get back into the car and feeling very pleased with myself go home. I managed to capture a photo of one of the oaks which line the pathway; large and gnarly, it’s majestic. I’m using it to accompany this entry.

Lessons for the day?..Do not let fear win, and it doesn’t matter what time it is when you have nothing to do.

My aim, over the next year, will be to walk to ‘The Old Fox’ – a public house along School Lane, I fear it may be shut but if not, I’d have earned a drink!

An interesting fact about this route…if they were to open it as a road it would cut the journey time down by twenty minutes.

Journey using ancient bridleway 3 mins.

image shows map with route shown to school lane from garston in Watford under the M1
Falcon Way to School Lane Bridleway.

Journey using government suggested roads which don’t go through gentry’s property 17-24 mins.

Thanks for reading!

 

Mosquito Plea – poem

Mosquito Plea – poem

Oh, mossie bite on my left knee,

Would you please resist itching me?

A world of pain I did land when,

I lost the battle with my hand.

The challenge exquisite.

My skin I need to quit.

End.

By Samantha “unextraordinarybint” Harris

Blimey. Looks like I’m stuck with the TVT mesh.

The last few months have been hard. As hard as the last few years? Maybe not. Probably because my expectation level has dropped to 0.01 above zero.

Those that read my blog will know I had a vaginal polypropylene mesh tape implanted in me during a hysterectomy for Endometriosis. I thought it was, and I was told, it was, an inert material designed to hold my bladder up like a sling which would help with the stress incontinence they said I had.

When I woke up from the surgery in 2005 I felt an intense painful tension across my pubis…which I still have. It feels like I need a wee urgently and feels like something is cutting into me.

It feels like cystitis. I moaned about it since..the implanting surgeon gave me medication to ‘relax’ my bladder…as all they could find in my wee samples was blood, just a small amount.

The medication didn’t work and so ensued a fifteen year investigation as to the cause of this blood, pain and urgency. My GP referring me here there and everywhere to try and find the cause. Me becoming sicker and sicker.

I’ve done tons of physio. I’ve done diet restriction, addition and subtraction. I kept a food diary for two years. I kept an activity diary. I analysed every part of my life….and changed it. Including my work – several times – as everything I did seemed to irritate my groin. I did this for years. I eventually became exceptionally ill and was put on an NHS palliative care program.

My daughter got involved, together, through research we found that the TVT mesh that I’d had implanted in 2005 had left women with the symptoms I was complaining of. But, the kicker was, the longer it was left in situ the harder, almost impossible, it was to remove.

It was not designed to be moved.

It was designed to cause a ‘healing’ response from the surrounding tissue and build a tissue mass within my pelvic cavity. It was this mass which would then, in theory, hold the bladder in place. The TVT mesh’s rough edges were designed to irritate and cause the foreign body reaction which hurts us.

So, my lawyer contacted me yesterday to say until I have a doctor who admits my pain is caused by the TVT I have no case. Fifteen years of investigations and lies amount to nothing but exactly what they are.

I think the cost should be counted. I’m sat at home, on full disability, I’m 52 years old.

I was working full time. I’d retrained to become an electrician to be more physical and left modelling behind – I could no longer stand up in the shoes and it got me no where. Nothing worked.

I don’t complain about not being able to walk as I do have Ehlers Danlos but is this is being used as an excuse not to treat me? I got referred by my implanting surgeon for ‘consideration of removal of TVT’ in 2018 after I presented him with evidence of my continued ignored symptoms since 2005.

I’m no closer to removal now than I was in 2018. Further away really, as the removal specialist to which I was referred left the NHS soon after I saw her in Oxford 2019 (with my evidence) and then the hospital discharged me last month as they said they don’t have funds for TVT removal.

I was hoping to get somewhere with lawyers to go private as I know the government is refunding women who have done this. It seems discriminatory that us poor people reliant on the NHS are being pushed to the back of the queue and, as it appears in my case at least, still ignored.

So, no pay out. No removal as yet…Having been discharged from Oxford I’m not even with a consultant gynaecologist. It looks like I’ll be holding on to this torture device for a while longer.

Yeah, I know Matt Hancock apologised to all of us but he just says the right thing for the camera.

Thanks for reading.

On a good note I did submit my first book to a literary agent. At least I can think straight again.

Nooooooo

I was told in 2009 that my lungs would collapse in two years – so everything is gravy to me…

However, there are some things which happen in my life that, although terrible at face value may serve as a lesson of some sort to someone. This story is not for the faint hearted or the weak stomached. If you retch at the thought of poo, this true story will hurt so just stop reading.

I don’t want to be responsible for ruining your day. Don’t say I didn’t warn you.

Today is one of those days, the incident which happened a few hours ago is a life changing event. That is, I’m so grossed out I am having issues sharing. This is my reality and it’s VERY real so it’s happening.

Sharing helps me to come to terms with the adjustment of increasing disability and the loss I feel. Plus, you must laugh at yourself otherwise you are really lost to the dark side of life.

I awoke feeling knackered from a unrestorative sleep. I padded around the flat trying to stand up straight – this happens to all of us, eventually – and I let the dog out. I make my very weak coffee attend the bathroom, feed the dog, and watch some videos on YouTube.

It’s a slow morning. The weather is grey with streaks of light coming through, a beautiful, normal day.

Bruiser (the dog) has recently become a house guest (again) and we are getting on famously. He was sleeping on the floor when I got up to scribble something down – a popular pastime of mine – and I as I walked across the room, I let out some wind. Quite normal you’d think, although a little embarrassing.

However, a piece of poo flew out of me and down my trouser bottoms so fast, it hardly had time to register, before Bruiser jumped up and ate it. I managed to scream, “noooo”. But it was gone.

Two things.

One is that I’m mortified. The expelling of bowel contents without one’s prior knowledge is a shock. This could be because of the TVT mesh and Stapled Hemroidplexy which I stupidly agreed to. Regardless, this will take some getting used to.

The second is the dog. He ate my poo. He came up to me afterwards for a cuddle. ‘was not happening as I couldn’t look at him. I still can’t, if I’m honest lol. Will our relationship ever be the same?

It took me two hours to stop crying. Two hours. My top was drenched. I then started laughing. This could be the start of a symbolic relationship. I mean I pick up his poo and place it in a bag to bin it. Perhaps he could follow me around and clean up after me? It would save me a fortune in adult nappies (tears again).

I live in a built-up area and the law states one must do this ‘poo picking’. Most dog owners take this responsibility seriously but do not like to discuss it. It occurred to me that perhaps he is returning the favor? However, if this were the case surely, he could eat his own and save me the bother of picking it up at all?

Once I had stopped crying and made an appointment for the doctor, I thought I’d call my daughter and gross her out too… After all, it is a time of ‘sharing is caring’. I did prepare her, before telling her, but that didn’t stop her hand drawing up across her mouth in shock…

After retching some, she laughed and told me not to worry about it. Apparently, this was one of the reasons they had a lock on the babies’ nappy bin.

So, what does this teach us? It certainly has taught me not to rely on wind just being wind.

Thanks for reading.

About the New NHS Telephone Consultations…

Get comfy, this is not an exciting read. It’s personal and very boring. I have some good points, I think. It’s a hard time for many of us, if not all of us and those of us with mental health problems are finding it hard to get any kind of advice.

I have two people I trust. They both suggest different things. I am at a loss with this one. This isn’t about my mental health it’s about my physical health but it’s impact on my mind is tangible.

During the covid19 pandemic the NHS has been going ahead with the implementation of digital consultations. They have basically worked out that they don’t actually need to see the patients they can treat them on the phone or by email.

Why have actual patients at all really? Just use our NHS numbers and bill the Trust anyhow? I feel like a used car being bumped between garages until my red warning light goes on. I hope to God that not everybody’s care is like mine.

I have had several of these ‘consultations’ now and quite frankly they could be better and feel like they are a waste of my time – they could be useful but unless doctors do them properly there is no point other than the pay load for the doctor or getting medicines prescribed ( I appreciated that when I had a virus in my eyes in the Spring).

One of my conditions is lung disease…it was diagnosed in my late thirties by a shadow on the lung seen on an x ray taken at Watford General in 2009 but I’d been suffering with vomiting, fainting, and heavy mucous and digestive problems since seven years old, intermittently.

I got diagnosed when I was sent private to the BMI Harrow 2008 for my bladder and they saw cysts throughout my other organs. I told my GP and then I was sent for the chest x-ray as my rib cage, at the back, hurt. I had a large lipoma there and it was removed in case it was causing pain, but it was nothing sinister and the pain persisted.

My NHS treatment has been reasonable. I was attending a Watford General clinic, their Thoracic department of Respiratory Medicine every six months to see a doctor there called Flip (not real name). They’ve done some gas exchange tests and learnt I’ve around one third of my lung capacity left but that was some years ago.

Flip is nice and friendly but not very attentive to my condition and wellbeing…like he does seem to care but often forgets he has seen me. He has twice written to my GP saying I didn’t turn up for clinic when I had.

I always have someone with me. So, it was all witnessed that I had attended, I’ve never missed an appointment with him but have several letters saying so. So, he seems like a good doctor but old and perhaps a little distracted generally? He’s very likable.

We are in the middle of a pandemic with Covid19 so my appointment for the end of September this year was cancelled, by letter, from the Thoracic dept. at Watford General. I didn’t mind. Nothing can be done for me, so it is just me and the doc touching base so to speak. He has seen me go through many changes over the last decade.

It was surprised when I got a call from a consultant based at another hospital. She introduced herself as Dr Thingmabob (not her real name) based at St Mary’s, London. She knew all about me and obviously had my notes so although I should have questioned why my case had been moved to her, I didn’t. I think I was in shock as I wasn’t expecting the call. I assume it’s because of the pandemic.

It is a queer thing though. I get frightened when they move me about. I worry that they’ve lost me or will get me muddled with someone else. I have previously complained about the A & E dept. at Watford General denying that they had a Thoracic medicine dept.

The staff told me it was all in my head as there was no record of my chest condition in my notes and no respiratory dept. at their hospital in April 2019. I digress. All this stuff does not help. Unfortunately, there is another Samantha Harris with my date of birth living in my town. Poor woman, we actually worked at the same David Lloyd gym once. I wonder if she suffers from being confused with me.

Doctor Thingamabob was friendly but didn’t do the basics. She didn’t ask after my health or current medication. It has been one year since I last saw the service. Where did she get her information on me from? Her main interest seemed to be to get me to stop taking HRT.

A lot happens in a year. Should Doctors be making decisions on old notes they have from ‘lord knows’ before calling the patient? They ought to know how bad the NHS computer system is at collating the information on one particular patient. They use it every day.

I told her I had already stopped taking HRT. It had been advised by the breast cancer clinic after getting breast pain diagnosed as cysts seen with breast scan taken at St Albans City Hospital in early 2019 – part of West Herts Hospitals NHS Trust – should be on my notes too…I’m not sure what she can see.

Dr Thingamabob was not going to listen to me…she continued to tell me that HRT makes my lung condition worse. I told her I’d stopped taking the hormones over ten months ago. I thought that she had finally accepted this when she asked me if I had any daughters. (YEP)

We spoke a little about my daughter’s lung issues although she never asked about my daughter’s gynae issues or I could I have told her she has polycystic ovaries. Digressing, sorry. But if this was her interest than surely this be an obvious path of questioning?

I brought her back to my case by questioning her about the three different diagnosis’s I had for my lungs over the years. I pointed out that docs said cysts in my lungs at BMI Harrow, but it was changed to Bullous Lungs at Watford then to Emphysema last year, as I told the consultant I’d started smoking.

Whilst on the phone she said that she was reviewing my CT scan of my lungs and said that it was cysts, and she would like me to have a blood test for LAM as that too can be make worse by HRT. I told her again I was no longer on HRT – I was getting a little annoyed at this obsession with HRT. We said goodbye to each other, and I put down the phone thinking ‘what was that?’.

I should point out usually my blood pressure and weight are taken by the clinic. These are obviously not able to be taken on the phone so she couldn’t see I am still losing weight. I still have the cough which I mentioned to Flip last year when I saw him. It is now very annoying and hard to go anywhere as everyone stares at me. Bloody covid19!

Being that I’ve had my cough since April 2019 it’s more than likely a ‘smokers cough’. It is a very embarrassing thing to have right now. It would be really nice to have a course of steroids or antibiotics to get rid, but it will never happen…or even better to be able to give up smoking without it hurting too much or making my MVP jump.

Oh, I’m very cynical. I’m thankful to have found the acetylcysteine and use it whenever the lungs are really congested. Thank you, Amazon International. I’m thankful for the mugwort which I SMOKE as well as drink as a tea. These things have genuinely helped me.

In my country it’s illegal to get acetylcysteine without NHS prescription and it is not licenced for use with lung conditions. It is not possible to buy steroids or antibiotics or antivirals from the chemist without a GP prescription. Many people look at our system and think it’s great. It’s not. It’s a denial of medical health products and being at the mercy of selfish doctors.

The consultation was pleasant. I mentioned to my daughter that the consultant was very interested in her lungs, more than mine as she still has a womb. Then I forgot it. At the beginning of this week I got a letter from the consultant headed up from West Herts Hospitals NHS Trust…not from St. Mary’s.

The letter tells my GP that she would like me to have this LAM test as I’m on HRT and it will be making my condition worse. She also put in a blood test form which requests the VEGF Ab Test and scrawls across it ‘send it out if needed’ as she doesn’t know if the hospital has the test facility.

There is something else which she has done that confused me. She writes, within the letter, that she has reviewed my CT abdomen scan and notes it is free of cysts on the kidneys…

As she didn’t do this (looking at the scan) on the phone to me, I’ve no idea which CT abdomen scan she is referring to. However, I’m pleased that she notified my GP of the absence. It seems unlikely that I have LAM because of this statement.

Being that she states, in the letter, that the LAM test is needed as it is ‘relevant because she is on HRT’, one has to wonder how relevant the test is because that I am NOT.

I have mental health issues. I’m finding it harder and harder to trust the medical services. There is no cure for LAM, and should the test be positive I would need to transfer to Nottingham to attend a LAM clinic – it says so in the letter. That is extremely far.

I’m very tired, fed up and in an increasing amount of pain with my groin and this fecking TVT mesh. Yep my chest does hurts, I’m air hungry constantly and I’m coughing. It doesn’t take a genius to know I’ve got a bad set of lungs.

And, yes, I have had a cough for over a year and am I’m in so much pain that I cannot rest my arms against my torso and have been for over a decade this is not mentioned on any letter. It’s frustrating.

However, the NHS treatments have historically been different inhalers and contraptions for delivering medicine into the lungs. They tend to make it worse or have side effects which I cannot live with. I’m never sure what the medicines are supposed to do.

One crushing, swirling capsule gadget made my throat so sore I could barely speak (and I like to sing). Also, singing is good for the lungs. And to be encouraged. Yet, as there was no follow up to report on my usage of the medication, do they know this. How could they? It’s also such a waste.

I now have this part of the letter here which I will write word for word what she has put under diagnosis. This is a therapeutic process for me to decide whether I go for the LAM test.

Diagnosis:

  1. Previously labelled cystic lung disease with some upper cystic changes and overlap emphysema
  2. Ongoing smoker
  3. History of Ehlers Danlos syndrome – type 3 with persistent chest pains, breathlessness.
  4. On HRT (post-menopausal syndrome) but of concern if LAM present.
  5. Cyclical vomiting syndrome.

No mention of my groin issues with the TVT mesh or Stapled rectum operations…note this is very common in my communications with hospitals. They choose what they wish to note, ignore what they do not want to note, or what they are not interested in.

If she’d asked me, I could have told her I still cannot sit down comfortably and am on fentanyl pain patches and that these help with the ongoing rib/chest pain too. The night sweats are still very bad.

Which to me, makes any cohort study I may be included in, invalid as our notes are made up of bits of information not the whole story. What is relevant or not is only admissible if the doctor can see it or asks the patient what their symptoms are and lists them in the follow up letter.

Not listed, not suffering from…

It should be also be noted that I have a crossover type of EDS with classical features. My collagen is not normal. However, it is the persistent pain and breathlessness being listed under EDS rather than the lung condition which is curious.

EDS has dislocated my joints and been responsible for persistent pain in my feet, hands and joints generally since I was fifteen years old. I also have Gout in both big toes upon walking or movement.

Also, unknown, to this doctor, as she didn’t ask, I’ve not had an episode of Cyclical vomiting since I started a new medication called Cyclizine whenever the nausea starts. It’s been great. Almost six months. This was a GP intervention and has stopped the visits from the nurse completely.

It’s worrying isn’t it?

What kind of consultation is it when the doc is only interested in their agenda?

If anyone did actually read this far, thanks. Any advice appreciated.

In my heart of hearts, I don’t want the blood test, if I’m honest, – as I don’t see the point (and the hospital don’t do it so I would need to believe that WG would send it on somewhere). I assume I have to have the blood test at Watford General as there is no information in the letter regarding this.

I have my groin to deal with. Preferring to keep trips outside, drama and fuss at a minimum makes things easier for me and is helping me to cope…this isn’t helping, thinking I’ll have to travel hundreds of miles to see someone for an hour and then go again. I already have to travel hundreds of miles to see someone about the mesh removal.

However, I have mental health issues and trust is a massive factor in this. Am I being stupid?

I researched the doctor and I kid you not when I tell you she is listed at almost every hospital NHS and private hospital in the area as a respiratory consultant apart from at Watford General. Why did they tell me it was cancelled and then this doc call? Why was she so intent on making me come off HRT? Is this the way all consultations are going to go now?

Why didn’t she ask me how I was and what medication I was on now?

Do I go for the LAM test?

Will it go against me, for future treatment or consultations, if I don’t?

Thanks for reading.

Recovered To Discover The World on Lockdown Because of CoVid19

Blimey gov!!! What on earth happened? I get a little sick and then come out of hibernation to discover the rest of the world has gone into hibernation for their health.

It seems that the corona virus has taken the whole world by storm and we will be feeling the affects one way or another for some time. I’d like to say welcome to my world…but I wouldn’t really mean it. My world is hard. As you will soon see, staying at home all the time isn’t all that great.

Bored…? You have no idea. But perhaps you have. Regardless, this is my little rant and moan about my own personal situation over the last couple of months which stopped me from really blogging. I did do something productive but I’ll share that another time.

In December 2019/January 2020 I got what my GP called a nova virus…I was vomiting, with a high temperature, sore throat and had problems breathing with pain in my chest. I was prescribed antibiotics but was unable to take them as the ones the GP had prescribed were a type I was allergic too and I decided to ride it out.

Just left with a cough and chest pain I then carried on going to my hospital appointments. I had some terrible urodynamic tests at Oxford’s John Radcliffe hospital. They are looking into my TVT mesh bladder and groin problems. The nature of the tests gave me a bladder infection which I was trying to fight off without antibiotics.

At around the same time my gout started playing up in my toes and my GP put me on Allopurinol. However, the pain increased into my left hip and leg..so the GP gave me Naproxen.  I felt worse and eventually started vomiting again with increased chest pain and bladder pain.

After days of vomiting,  a district nurse came out to give me an anti-sickness jab – unfortunately it had to go into the painful hip. In the nurses defence I don’t have any other site other than my buttocks where there is enough flesh to jab without hitting bone. Perhaps I should have forgone the injection as I continued to vomit regardless.

Then I came out in a small but nasty looking rash over the injection site. It was red and raised and very painful. It was diagnosed as Shingles by a GP the next working day.

There is a known reaction to the drug Allopurinol. It’s called an Allopurinol rash…it mainly affects black and south asian people according to the pharma leaflet. It is a red rash which blisters and can go over the eyes. Apparently docs should be careful giving it to people with immune response problems. However, I am white with Ehlers Danlos and mesh immune issues which are denied by NHS so Shingles it is.

The rash was just on my left buttock. It blistered within 48 hours. I was started on anti viral medication that day – to which I am very thankful for. The next day a rash appeared over my right eye and gave me trouble for a few days. The GP called me and explained that should it get worse I would have to go into hospital…I made up my mind not to call the GP again.

There was two days when my sight was blurred and I admit to be slightly worried but I sat in darkness and didn’t do anything too stressful on the eyes to rest them.

Last week it cleared up enough for me to think about restocking my empty kitchen…as having shingles in my eye I wasn’t allowed out or have any vulnerable visitors. I generally do all my shopping online as I am a wheelchair user and find shopping very difficult, especially when you have a lot to get.

I head to my trusty Sainsbury’s grocery online account…there are no delivery slots. I complained and asked what the purpose of my delivery pass at £20 a month was.

Sainsbury’s responded to me and said I would be able to shop today… as I was to be given priority…only when I attempted to do this it wasn’t possible and the helpline just told me it’s too busy to help.

This is a shame as I not only do my shopping online but I also do my neighbour’s, who is also disabled and housebound. I wasn’t concerned too much but now I am starting to get concerned. There is much lip service to disabled people but I can see no actual help or assistance.

On top of this I have to get my PIP form into the government this week – the government is looking to stop my disabled payments. Although it’s not due to run out until June they wanted to know in January if anything had changed….I was too ill to fill it in then so I asked for an extension…then I got shingles…now I’m out of time.

I’ve checked online and they’ve (gov) said they really need this form so I’m hoping someone will be able to pop it in the post for me as I’m supposed to stay in…you’d think the government would give disabled people a break during a time like this and allow us to photograph it and send it via email or do it over the phone but no.

So here we are. The grandchildren are sill poorly and both still on cough suppressants. My daughter has been diagnosed with pleurisy but is a healthcare worker so is already back at work after five days off. They didn’t test any of us for anything.

Good luck to everyone, especially those caring for the sick or keeping the country they live in running in another way, I salute you, and I hope to be back writing, regular like, soon.

 

 

Mesh? TVT? The Right to a Full Sex Life.

Trans-vaginal tape is the term used to described the plastic mesh placed during bladder surgery. It is basically a strip of unfinished plastic mesh just like below. It is placed around the bladder in a special procedure using long needles and brute strength. 

TVT is usually implanted to help secure the bladder against leaks of urine, it is used as a sling between the pelvic bone cavities. It was ‘designed’ to support and lift. It cuts off the flow of blood, urine and feeling to the area depending on it’s position. The loss of flow is intermittent, so one can go from calm to complete groin spasm in milliseconds.

So this, one second it’s fine then spasm, starts an onset of unbearable urgency. It gets so unreliable that eventually you are either unable to urinate or can’t stop urinating! Also urination becomes extremely painful. It is a similar situation with sexual performance.

 

Above is a picture of the mesh which was installed into me – as you can plainly see it is the same polypropylene that fishing nets are made from (link below). That is the same polypropylene which they say is dangerous for our environment and marine life (link below).

It has caused a lot of damage to the human beings it’s being installed into.

This is mesh plastic, very useful stuff but unfortunately toxic.

 

There is an alternative operation. There is no need to maim people. This plastic mesh surgery is just a new version of an old and well practised operation to help women after childbirth. The old operation was successful for hundreds of years but took more time.

In the past, Colposuspension was the most commonly performed operation for the treatment of stress urinary incontinence. This is a major operation that requires a general anaesthetic. The abdomen is opened and the bladder neck is lifted upwards by stitching the lower part of the front of the vagina to a ligament behind the pubic bone.

I was given TVT suspension during a hysterectomy to remove my womb and the plastic mesh was heat sealed inside me as you cannot sew stitches into it. This was all performed under general anaesthetic.

It was years before I clicked I’d been duped. Although there had been immediate problems things felt different as I no longer had a womb. So, you could say that I was fairly satisfied. Believing that my continual bladder and bowel problems were normal after a hysterectomy and to be fair, I was told they were normal by my GP.

However, approximately ten years after implant I started to have continual vomiting. They diagnosed Chronic Vomiting Sickness. But, numerous other, now called ‘mesh related’ symptoms appeared too, other auto immune problems. 

The Gynaecologist didn’t tell me TVT mesh may trigger a reaction with my body. I was not told it is a poison which leaches into flesh over time. I was not told it is only guaranteed for fifteen years and then they didn’t know what would happen! This is something to consider if you are offered plastic mesh for any invasive procedure.

Being around noise of almost any level began to hurt, affecting my ears and jaw. I started to not be able to attend my normal social events or even restaurants. Now, fifteen years later, I cannot eat food I used to because I can’t chew for long without it affecting my ears.

My ears now suffer from constant hypersensitivity.  I became reactive to nearly all my medications and unable to eat an ongoing amount of foods. Constant urinary tract infections with blood constantly present as well as other less describable things.

This has to be said, sorry I’ll say it as delicately as possible but basically my back end and front end started behaving erratically. It started to get difficult to sit comfortably. I kept getting cystitis without having had vigorous sex.  My GP sent me to the sexual health clinic although I told him I’d not been able to and even brought along the boyfriend!

They sent me back stating I did not have an STD. I officially complained then spent next few years having investigation after investigation. Not one consultant or hospital told me that it could be the TVT mesh. However, it is continually mentioned on my surgical notes.

Now I have learnt that it was a plastic mesh tape of device. I know that some plastics harden over time and can become brittle. Once the chemicals holding them together have been leached into the surrounding body the plastic mesh starts to disintegrate.

Fifteen years after implant I am rarely able to have sex. If I do the only position achievable would be missionary and then I cannot abide any pressure on or in my pelvis at all. Now, where is the joy in that?

Being a confident woman I liked being on top and used to enjoy the freedom that my extra flexibility gave me. However, it seems the TVT plastic mesh does not allow for too much movement so it’s lie back and stare at the ceiling.

Being so flexible was doable when I could keep my muscles strong. Not so if you are stuck at home waiting for the NHS to remove something they never should have placed in you to begin with. Muscle wastage is a real problem as walking is not possible. Typed through gritted teeth…

I am being truly honest when I tell you I was looking forward to years of guilt free, mature, steamy, sex as not having a womb I wouldn’t have to worry about contraception. Ahhh, how naive was I?

Anyone reading this should understand the kind of money involved in this plastic medical mesh industry. Last year the industry was worth 6.7 billion dollars. If you are considering mesh implant for hernia or pelvic surgery you will be told not to take any notice of people like me. You may even be told there is no alternative.

You will be told that the problem is minor and that the sufferers blow their symptoms up for attention. I know this as daily I read a Facebook page called Slingthemesh. It’s a support group. Generally it is full of heartbreaking stories of the mesh maimed.

Perspective patients come into the group, they tell us that they’re offered this treatment and what they have been told about us. I’m just going to tell you that there are millions of sufferers of TVT, TOT bladder sling, hernia mesh, pelvic prolapse mesh blanket, mesh tape and other new names they are thinking up of to stay ahead of the law suits.

You are not going to read very many personal stories about how the mesh has affected it’s victims. Most victims being too embarrassed or completely unaware of why we are having the problems! Some have won massive payouts and are not allowed to talk to public. Most victims don’t have a blog where they can share.

Having always had a varied and satisfying sex life it is a shock to be without it. Of course I get on with my life. There are much worse things. I’m thoughtful of the fellow souls in a similar position for the same or different reasons. But understanding it doesn’t mean I have to like it and put it with it in a gracious manner.

My membership to Kestrels goes unused and my right arm is killing me.

I’ve checked my rights and I’ve no right to sex but I have the right to express my sexuality. That’s nice but not helpful. In the mean time I’m thinking of doing a critique of my favourite porn videos… and the lack of choice from a female user of the industry.

Ah I just came across a blog page funded by super big organisations telling us their plans to dominate the hernia ‘industry’ be careful out there folks!

Thanks for reading.

http://www.toxicswatch.org/2008/11/toxic-leaching-from-polypropylene.html

https://www.memphisnet.net/product/4040/nets-seine-knotted-9  (industrial use mesh)

https://www.cbsnews.com/news/johnson-johnson-agrees-to-117m-settlement-over-pelvic-mesh-devices/

http://inthesetimes.com/article/13353/a_female_surgical_nightmare?

https://www.cbsnews.com/news/johnson-johnson-agrees-to-117m-settlement-over-pelvic-mesh-devices/

https://medicalxpress.com/news/2018-07-surgical-mesh-implants-autoimmune-disorders.html

https://www.drugdangers.com/transvaginal-mesh/brands/

https://wordpress.com/read/blogs/161987861/posts/29642

 

Lumps – A Short, Self Obsessed, Article

In true me style, it took weeks to realise that I’ve been able to play my guitar for longer than usual. Being extremely happy to be playing again, I didn’t question it. Tending to go through life heavily sedated – my defence feels secure when I admit this.

I did, however, finally twig last week when I got to the end of a three minute song without having to take a break to massage the hand.  So, of course I got to thinking about how I could suddenly do this.

What have I done that is different? Self analysing is common when you are perceptually poorly, apparently it’s natural. To comfort myself, whilst thinking, my right hand went to my left hand to massage the nodules on my knuckles. I’ve been doing this to help with these ‘growths’ for around two years now, as per Rheumatologist’s instructions.

As I started the rhythmic, circular motions something was feeling unfamiliar. I was massaging my knuckles and they were unusually flat. No lumps. I did the cursory checks over the rest of my hands…to see if they had migrated (?) but they are definitely gone. I have waited a few days before announcing – just in case they returned, but I’m exceptionally pleased to say that the my lumps on my hands have gone!

Yay!!!!

Now, to the query of how. Or rather my theory as to how.

The most recent addition to my medical defence against my illnesses has been the introduction of a chemical called Acetylcysteine, also known as N-acetylcysteine or NAC. It was originally discovered in the 1970’s but I’d never heard of it. Apparently it was a big deal when they did discover it and many people across the world use it to aid health.

For myself, I’ve come across NAC by error and accident. Initially it was prescribed by my COPD nurse at my GP surgery. It took weeks for the chemist to obtain it, as he hadn’t come across it either. I picked up the effervescent tablets with the same nonchalance as I usually view my medication with – rare to find items which work I’ve become a cynic.

Usha (lovely nurse btw) intended to have the medication as she’d read, in a magazine, how helpful it had been for COPD patients suffering from bad absorption of nutrition and I had lost over two stone in weight which she could see from my health records.

It was only an accident because it is not licenced for use in the NHS for treatment of lung conditions. She wasn’t supposed to prescribe it to me (error) and then, on top of that, a GP okayed the script without realising (accident).

When I asked for a repeat of the wonderful script I was told the bad news. There had been an error that had resulted in the accidental prescription of a drug I wasn’t allowed.  So, I couldn’t have it again. The surgery apologised.  They gave me a medicine called carbocysteine but this sickly sweet alternative with added flavour does not work.

However, to imagine that I would just leave it, having now found something which made me feel better, was unrealistic. As NAC really had improved many things for me, I decided to find a private source and a quick search online saw me discovered how popular Acetylcysteine is and that it was available without prescription globally.

Thankfully many outlets do sell a form of NAC but none are effervescent type in the UK.  As I am unable tolerate capsules or tablets I searched a little further and found a Spanish supplier which has a similar dissoluble tablet, only this one is lemon flavoured – yuk – I prefer plain because of the chore of my stomach and bladder.

Mesh injured and citric acid is not a good combination. Vitimin C is citric acid and as such it triggers cystitis and over active bladder symptoms. However, all drugs have some sort of side effect. So with this in mind and determined to get something with active NAC within, I thought I would give it a try and purchased, off Amazon, anyway.

When it plopped through the letterbox onto the doormat, weeks later, I couldn’t get the canister open fast enough. First day was great, but immediately my bladder had kicked off. Within days, my kidneys were beginning to become painful and I knew the product was too much for my system.

I cut the dose from daily to once a week because of these side effects. Results are now good, my energy levels are much improved and so is my appetite. I am happy with this product – the one I buying via Amazon is called Aquilea Mucus. The added Vitamin C will be of benefit generally once the bladder mesh is removed (I’m awaiting this on NHS).

I’m sharing my experience of this product because I want to share, I’m not on a commission or anything like that. I have no agenda other than that of my experience to be shared.

Please do bare in mind this product was my only choice in a small market! I’ve just ordered enough to see me through Brexit. Just in case you guys suddenly decide to try it too and stocks get low in the UK.

I did my research and wiki sums it up quite well.

wiki says, “Acetylcysteine, also known as N-acetylcysteine, is a medication that is used to treat paracetamol overdose, and to loosen thick mucus in individuals with cystic fibrosis or chronic obstructive pulmonary disease. It can be taken intravenously, by mouth, or inhaled as a mist. Some people use it as a dietary supplement.”

So, NAC has many uses. It seems that different firms highlight the relevant beneficial areas to market their product. This can make it difficult to see the whole picture of what NAC is able to do for some people. Costs are pretty cheap compared to other drugs.

There are many articles on NAC so as I am not recommending and am just sharing my experience,  I’ll leave it to you to do the research if you want to try it for yourself or recommend it for someone you know.

My GP says it’s only licenced for paracetamol overdose in NHS and will not allow me this medication for COPD so I take it as a food supplement.

I’m not a doctor or medically trained in any way. My qualifications are mainly in electricity but I do have a keen interest in biology. I have the first hand experience of how things affect my body and I know that I feel better than I have for years regarding energy levels and tightness of chest.

The research calls NAC an non essential amino acid. Amino acids are essential for absorption from what I remember from biology so my COPD nurse is one of heroes now. Usha, the nurse, listened to me and helped me – ten years under a consultant at respiratory thoracic department at Watford General Hospital haven’t done as much.

…and the nodules, I call them ‘lumps’, that have disappeared from my hand?  They really have gone completely and the pain associated with them. I’m thinking that the cleansing processes of the Acetylcysteine on the body are just what my body needed. I couldn’t be happier with it.

So, far from being the usual ball’s up, the NHS’s error in prescription has benefited me. Which is nice. Being Brits we pay into our national healthcare system by paying our tax and insurance when we work, it’s nice to know it’s there when you need it.

It is unusual to be able to say something positive about England’s health system and I’m not sure this article is. I see the British spirit as making the best of a rubbish situation, as it could always be worse.

From handling my mental health issues, I know that positive outcomes are important to be recognised, regardless of how they come about.

Thanks for reading folks.

Have you had an error which benefited you in ways you didn’t imagine it would?

 

 

Home – A Gentle Poem

I watch the clouds

Shapes form and drown

The sunlight glistens through

Formations of winged worlds

Make and break

On my horizon, true

Tick tock of time

Measures each view

In beat with the train as it chugs through

Listening to the gusty wind

Watching lights flash orange

Yellow, green, red, no blue

Tail lights snaking

Away up the road

Souls bracing against the cold

Now the sirens and flash of blue

Choppers slice, break the air above

Then silence again

The wind whistles through

The home I love

End

by Samantha “unextraordinarybint” Harris

 

My home looks like some sort of tower block transformer in shadow!

I love being at home nowadays – it has taken time and now I’m appreciating this space. Tower blocks are not everyone’s choice, but the views are amazing. What I see out my windows inspires me almost every single day – people watching for sure but more so the amazing English weather.

Have you made a move of home to cater for a change in your lifestyle, health or otherwise? How did you find the adjustment of living space and pace? Do you think one ever truly unpacks?

Thanks again for your time.

 

 

 

 

 

Having a Bath – Disabled Health Advice

Here in the UK disabled people are rather bullied into giving up their baths in favour of showers. This is regardless of what their disablement is. However, the benefits of bathing have been known for millennia. One could pay a fortune to go to a spa or you could have the common person’s alternative.

For me, I’ve just the same danger of falling in a shower than I have of falling in a bath. So it it’s definitely worth the risk of the bath because I benefit from the bath, where the shower is just anxiety and not beneficial to pain relief, it just cleans me.

So, the following advice is how I get around all these little problems and bathe as safely as possible, whether it will be suitable for you or not I cannot tell. I can tell you that I am a fifty year old woman who has taken herself off Tramadol, and many other life limiting pain killers in favour of more natural methods.

I have Ehlers Danlos Classical cross over Hypermobility with some Lung and Heart incidentals such as MVP and Bullous Lung Disease – I have more things to cope with but these are the conditions mainly affected by temperature and/or standing for any period of time. I also have spinal pain and internal damage which is helped by the thermal properties of water.

It’s strange that I have to sit here really to justify the use of a bath but that is the world we currently live in. The UK claims constantly it is short of water, although we are an island with many fresh water rivers. And although it rains all the bloody time here, the water companies have managed to convince us to use less and for years I did.

Many people will correctly point out it is possible to sit down on a shower seat. If you’ve ever sat down on a shower seat and applied any type of soap you will know it’s very slippy so it also carry risks. There are straps (sometimes fitted) but they don’t make you feel secure and it is very stressful thinking you may slip.

Caution is always a key consideration when bathing and I am not saying you should bath – especially if you know or your carer knows it’s really dangerous for you. What I am saying is that with good organisation a bath could be had which could benefit a sufferer of aching joints, bad back or skin complaints.

It is also very good for calming the central nervous system if you are anxious. If I am having a bout of Chronic Vomiting Syndrome there is nothing which will halt the retching other than a bath or being out in the rain…although the rain could just me.

Here is my bathing advice.

Having a Bath When You Have Health Considerations.

Preparation For Disabled Independent Bathing

Change all shower and shampoo bottles into a container with a pump action. This will make it is easier for you to gain soaps without straining yourself. You want a bath to be relaxing. This is about bathing being an aid wellbeing.

Pump Action beats the old system for disabled use.
Advice for disabled or anyone having problems with opening shampoo bottles. Change to pump action.

Make sure your pain patches (if you have them or HRT patches) are placed on your upper stomach or arms where they will not be immersed in the hot water for a long length of time – hot temperatures could affect the rate of patches absorption. If you have a pendant alarm put it near the bath but not somewhere will it may get wet.

Put, flannel, towels and things you will need next to the bath, where you can reach them from sitting in the bath easily. This may mean bringing a small stool into the bathroom, if so place it near the bath on a level surface – then it can be used when you get out of the bath should you feel you need it or have mobility issues.

If you have incontinence issues then please ensure you have your pads and underwear somewhere nearby too…nothing worse than doing that just after you bathed and have already let the water out.

Prepare the bathroom with your clothes or something warm to put over you in reach from the stool. For me, I use a thick dressing gown, and have hooks nearby the bath so I can reach the items from the bath without having to strain or stretch.

Does your bath have rails or something else to help you get in and out of the bath? Seriously consider whether you will be able to get in and out of the bath with the things available to you in your own bathroom.

Get rails added – they make a huge difference to how secure you feel. If you cannot for whatever reason look for other options. How close is the sink? Is it possible this could be held on to – if it doesn’t look strong enough don’t do it.

I slide out over the top of the bath tub and onto a stool on days when I’m too faint to stand and hold the rails. However, I am currently underweight and slip around easily, if you are overweight please consider that this could be too much effort for you so install a hoist for your safety or configure a way to ensure you are able to get out safely that works for you.

My method of bathing involves allowing all the water to drain away when finished before attempting to get out of the bath. There are several reasons for this. One is that it allows my temperature to come down and my heart rate to steady. Two is that it is hard to pull yourself out of water, more effort is involved which can make breathing difficult. And three is the bath is less slippery with no water in .

Another benefit of draining all the water is it enabled you to pull a towel in with you before you get out of the bath without it getting soaking. This way I can start drying myself and wrapping my hair up before attempting the move and keep myself warm.

I’ve been asked what I put in my baths. Quite often just water but I do swear by Epsom Salts for proper relax and a bit of rosemary. The salts help the hot water get right into the skin for deep thermal healing. They also draw out any impurities in the body.

These salts have been very important for me. They have a great property for drawing out things like disposable stitches before they become cysts. Whether that is the same for others without EDS I cannot say.

However I will warn you not to use too much Epsom salts in the bath or use them too regularly as they can dry the skin out a little too much. Also, if you have any sort of implant (I have bladder and rectum implants) you will find the area aching afterwards. Whether it’s the salts action on the implants I do not know however, this feeling is reduced if I only use salts once a week.

So there you are, please take my advice or leave it. I feel once you have rediscovered the wonderful feeling of hot water seeping into your joints and driving away your pain, if only for a few minutes, you’ll be hooked on taking a bath rather more painkillers.

Please remember that preparation is key and enjoy the joys of hot water safely.

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.

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!