The 2525 Pilgrimage

Inspired by a Zega & Evans song, released in the 1960s, called ‘In the Year 2525’.

The 2525 Pilgrimage by Samantha “unextraordinarybint” Harris

Centuries since Corona Virus Alpha hit Earth devastating our population, I sit here using a rusty blade, scraping marks in hope that I won’t be discovered by our monitors. We use this ancient fridge for storing clothing; working well for keeping moths out, my up-bringers and I sharing it. Now, it will bare these words for history.

At school, we’re told our ancestors used the fridges to keep carcasses fresh. It was a time when humans battled with each other, spoiling the planet with poisonous weapons. A time when people murdered Earth’s other inhabitants; selfishly eating animals, using them as a source of protein, they’d manufacture products from their carcases and enjoyed wearing animal skins, even using bones for medicinal broths and industrial glues.

I’ve never known a cold fridge. The harnessing of electrical power was outlawed for humans in 2050. For our safety, AI automatic droids maintain our planet’s electrical grids. Distribution and supply is strictly rationed to Necessary For Life organisations and not squandered by people.

I’m told my ‘need to create’ is an escalation of my illness, so I must be cautious. I’m a committed New Beginning Believer but the evilness of bad mental health remains. Managing to physically scrape one word a day has taken discipline. My addiction craves more, risking raising my heart rate to a detectable level.

Weeks after the Corona Virus Zeta variant attacked the planet in June 2030 a cohort study showed how vulnerable humans became when out of their homes. As a major medical discovery it saved billions of lives but had not been welcomed by all. Deadly violent protests spread across the world faster than the virus, destroying cities and towns, cutting utilities and leaving land scorched with fire.

It is history now, how it was necessary for AI to oversee human health for The Common Good and the protection of our species and our solar system. Our homes, for our safety, had to become human cages.

Robots now distribute our care, limiting human error. Armoured vehicles travel streets delivering water tablets and nutrition, monitoring our vital signs so we rarely starve if we are viable. Thankful, we watch through holes we’ve piped into the hives on our windows.

Foxes, snakes, sheep, wolves and deer roam outside our homes on cracked tarmac. The grass verges, left to grow naturally, encouraging wildlife, are now host to the genetic insects released to combat stray humans carrying disease. Building nests and hives around us they are able to monitor movements keeping AI informed of our well being.

State television transmits a basic program service with special entertainment on Saturday nights. Generally television informs us of how the latest health programme progresses, which locations are expecting the Build Back Better vaccination robots and the daily birth rate over death rate graph.

International Communications are impossible for most since the satellites were, for our safety, reconfigured using the same space drones that humans had invented for mining exploration. Anti vaccination terrorists had to be stopped from using the networks to organise resistance and had been blocking The New Beginning Faith broadcasts.

Automatic trucks collect human waste weekly from each street moving it to a collection point where it’s transported by crane into giant airships run on biofuel. These craft transport the sweet smelling load to the ocean where it is released for the marine life to feed upon. Diet, controlled by AI, allows us to now produce nutrient rich waste which is useful until our deaths.

Few natural humans, other than royalty, can safely move around outside. We don’t have the genetic makeup. Crane drivers have outside protective freedoms. Having a skill AI can’t master, they bare witness to how the Build Back Better system is working. I’m assigned a crane operator as my lover. I pray we’ll be fruitful.

Gratefully, I’m able to leave home once in a lifetime. I’ve been researching my Life Pathway Journey on the battery run Ethernet computer. It will be so exciting to see The London Eye. One has to be patient as the current female pilgrimage age is the first month after one’s fifty-fifth birthday.

I pray I will still be considered worthy.

The End.

Feeling Persecuted in London

I woke up upset again today.

Recently the sun has been shining. We had a week long, glorious heat wave.

The government released most of us from our homes from covid19 lockdown rules and we’ve been able to move around freely, with or without masks. Most of us made the most of it.

And, we are looking forward to complete freedom on the 21st June.

So, why do I feel low?

Could it be because I’m surrounded by untruths?

As I sit and write this, a mist hangs low over Watford in Hertfordshire and sirens sound loudly on the roads outside my tower block. It is always busy where I live, on the outskirts of London.

Many things bounce around my head, none more than the attack on myself in 2012.

I try so hard to not think about it…so hard.

I went to the fair on Sunday. Three hours of screaming and colour. It was probably the second time I’ve been out with my grandchildren. It was amazing. Everyone was happy and smiling. I was smiling. I was laughing.

So, why don’t I wake up thinking about that happiness?

I’m trying to avoid news channels but I live in London. It’s impossible not to know the news as I’m attached to youtube most of the day.

I check to see if the system is working yet.

For me, this is done by putting a victim’s name into the BBC news search box. Not mine.

No, it isn’t being covered.

He doesn’t matter.

So, why do I feel so upset. They tell he doesn’t matter.

Roll on ‘complete freedom’.

Thanks for reading.

Photo is of german facial protection mask from 1600s currently on display in a Combined Military Museum England, UK. Sorry about my wheelchair being reflected in the glass! I wondered if this mask would protect me from the virus, G7 or G5?

The Fall

The grateful stood back

Watched

While we attacked

The blood spewed

Our eyes avoiding

The tortured

They knew

The Great Four sat

Surveyed, reviewed.

Others, apathetic,

Reigned

Bonded to greedy games

Enemy brought in

Boxed bright

Fuelling winnable fights.

She slips out from within

Unwanted, ugly, thin.

Her plan, simply to survive

To build, to love and to lie.

Understanding the lines in the sand,

She gathers feathers

To softly land.

The end.

By Samantha “unextraordinarybint” Harris.

I hope that this poem resonates with some readers.

staycalmcarryon

Confusion – Journal Entry Real Life

 

Don’t read any further if upset by injustice, neglect, poverty and perversion.

This be trigger city for some.

This is your last chance, I’m blunt but not coarse, I am going to discuss a terrible subject in the lightest possible manner.

Confusion.

When I was a child I was assaulted by an adult man (in the worst way). The most prominent symptom, apart from the physical pain was that of severe confusion. I became OCD as a result of trying to come to terms.

The whole thing was so completely and utterly at odds with everything I knew then, I was under ten years old and used to dolls, handstands and dresses. I went off dresses, handstands and dolls.

I’m fifty-one years old now. I love dresses now. Sod the handstands. It may surprise people to know that some actions are never forgotten – no matter how many other, lovely, consensual sexual moments one does experience.

If you were to get complacent and fool yourself, a flash back will remind you. Today I had one, it must have been ten years since the last. His face appeared when I was having wink. I decided to have an imaginary wiss on him. He went.

For a longest time, I thought along the lines of ‘why me?’ But then it became all about recovery, mainly because I have children. Many different pathways of recovery were tried.

I didn’t recover quickly because I was pushed towards forgiveness. No confrontation, no justice and no reasonable explanation. It took ages, as the confusion became anger, festered and grew  to become depression.

How does forgiveness help? If no one is saying sorry, you can only forgive so much.

Attending lots of therapy – when my children were young, I needed to deal with my anger and more recently, I started writing this online journal and some books to help. It really does help too. Whether it helps you or not is another matter…

These days, I feel that I am better, adjusted as much as humanly possible. I’m able to think about what happened back in Widewell Woods with less emotion and I apologise if I cause any harm or painful memories to those reading this. I understand it’s place in my life story.

It does not define me, but it is part of me, unfortunately, a regret out of my hands.

There are no safe places for children if we don’t fully understand. I feel it is not just a sexual fetish with innocence, even ‘perceived innocence’ is not the full picture. Control plays a part. It is a form of soul capture…making an imprint on a person for life. The man who hurt me was playing god.

Perhaps this is why the church didn’t help me. They couldn’t play god any more with me…I’d worked out he wasn’t really there to protect us at all because anyone could come along and trump him.

Obviously, no assault or abuse is the same. I’m going to come out with something controversial and declare that there was nothing sexually charged about the scene of my sexual assault.

It was a moment of ruination.

He wanted to ruin a female life, he planned to ruin it and he had, but it hadn’t ‘satisfied’ him. I suspect he wouldn’t have been satisfied until he’d taken more but a disturbance didn’t give him time.

He wanted to ruin a girl – in order to ruin a woman.

He did succeed for a while, but something was able to absorb the hatred I had, not the confusion, just the hatred. God was my buffer. I thank the ideology for that much, begrudgingly.

No one else cared enough for it to be effective if I was angry at them. It was only the church who had appeared in my life, made me feel some promise and then let me down, that it was worth getting angry with in my child’s mind.

No one promised life would be another way, ever. Since living with Dad and step mum I knew a life of pain. God had promised happiness if I followed certain rules. I had followed his rules.

I could be justifiably angry with him.

The assault shone a light on other confusions. Things my step mother had said some years before. I’d  started at school but was off sick. We had to go out. I’d upset her by slowing the process down. I was crying and she was pulling me about, putting my shoes on.

I said something to the effect that she was hurting me. The shoes were too small and they’d yet to be cut so that my feet could grow. This was a common thing for British families struggling in the 1970s. I had trouble with the buckles, they were too difficult for me to do up, she was angry.

In her defence, she was not my mother, I was yet to be diagnosed. Labelled stupid and clumsy because of the Elhers Danlos and extremely short sighted, it could not have been easy. I mean, it must have been frustrating for her.

It was horrifying for me, but I knew no different.

She spat her words at me,

“You should think yourself lucky, I could be shoving coat hangers up inside you.”

It was an odd thing to say to a five year old.

I had no idea of a vagina, only the vulva. I only knew the outside of my biological self.

My creative inners, ‘my vagina’, womb or ovaries were not on my radar. Biology is good like this, the female genitalia are not exactly accessible. I assumed she meant put coat hangers inside me via my belly button, that was, until Widewell, the man and the sexual assault.

In emotional health terms this is called ‘sexualization’. Children should not be sexualized early, it’s not healthy mentally, emotionally or physically. This is why we use terms like, the bird and the bees, the stork brought the baby and don’t discuss or do sexual things in front of children. We protect their innocence of creation.

The human act of copulation is not a child’s business. Children are just the result…

The man who assaulted me knew this. He knew he had no business going in my pants. I knew too and tried to stop him. It took him seconds to ruin my life, to change my perspective. In that moment, he set me apart from everything. He distanced me from my peers, my step mother, my father and just about everyone I knew.

How could a weak man gain control over strong, healthy and vibrant women other than to sabotage her as a child? This man is a coward, no more. A terminator of women…going back to a weaker point in their biological past to ruin them.

I know now he lacks the respect for women he should have, and his action is that of a misogynist.

I stayed fascinated with sex for decades, attempting to understand it’s dynamics. I can tell what desire is and what is hatred. I recognise love and respect and can see usage and control.

He was looking at my face when he hurt me. His was not a pretty face.

The man who assaulted me did not fancy me. He wasn’t attracted to me…he isn’t attracted to children. I’ll be very clear, he was into ruination, he wanted to destroy, to take my soul – his intention was only to hurt and cause pain.

He knew I was confused, he hoped it’d be hurting me forever, but it didn’t appear to make him happy. His brown, watery eyes were sad and angry as they looked into mine.

Gaining only sour gratification of his bitter hatred for women, he assaulted me, and then walked away. For all I know, back to his wife and children. Sorry, but it could be true – it’s all too late to do anything now and I didn’t do anything then.

The last human bone fuses for adulthood around thirty years old. I’m still confused at how females can be safely ready for child birth or penetrative sex beforehand.

Perhaps a doctor could explain it to me? Vets protect the youngsters from grown adult males in zoos.

Paedophiles are nothing more than human time travelling terminators, murderers of souls. They should not be given an audience at any level other than disgust. They should be kept away from society and not housed near families. I’d go as far to say that they should all be rounded up and put in Chinese style re-education camps until they change their views.


The End.

By Samantha “unextraordinarybint” Harris.

A small part of my own life story.

 

 

 

Stop Discrimination in Medicine

Over and over again we are told only some people can get certain diseases and other races cannot. Even if results come back indicating a blood disorder, sickle cell will not be tested for…maybe even rickets would not be picked up because of your childs genetic makeup…although they don’t know your child’s genetic makeup…they do that on sight, by name or nationality. They = Doctors.

Rickets is a disease where monitoring and treatment is being targeted towards non whites when every child is at equal risk. Here is a medical paper saying it isn’t just non whites who suffer from it…attempting to make racist doctors understand that white children get ill too.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60211-7/fulltexthttps://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60211-7/fulltext

We’ve accepted racism and allowed it to enter our health professions. As a result Rickets is on the rise and many of our sick children go undiagnosed with painful diseases for lengthy periods.

We must call out racist papers and medical trials. If a drug is to be safe or a treatment, it must be safe for everyone. As genetically we are all different – not all white people are the same, not all black people are the same and there are billions of people inbetween.

Allopurinol – known to have vicious side effects in non whites is not usually prescribed to black folks in England, or shouldn’t be. It was given to me though and caused major rash and major gout attack.

But, much worse than that, I found this video. It doesn’t even warn against giving it to black people…

So, we are all at the mercy of this distrust and it is caused by the Pharma companies.

Please be cautious about any medication given to you and read the small print carefully.

Stay safe.

Thanks for reading.

I wonder how many other drugs are known to cause harm depending on your genetics?

Beautiful Sunset

Today started very grey.

The whiteness surrounded the tower block I live in.

See..

But during the day it got nicer and nicer until this evening, when it became stunning.

Have a wonderful evening folks. It is Guy Fawkes night for the folks of England, I expect to see some celebrations but small scale because of the Lock down.

Freedom and happiness for ever! Stay safe!

Watch “Special report: Infected Blood – The search for truth” on YouTube

So, while the world is looking at blood transfusions to fix the ‘covid19 nightmare’…this is going on.

The link above is for the youtube coverage of the NHS blood scandal which started in the late 1970s and continued – disgustingly- until the 1990s, accidently killing thousands including Anita Roddick who was The Body Shop founder.

It has taken forty years to get here and they have been investigating for some years now.

But was it really an accident?

I’ve been listening to the inquiry and it’s rather sickening. It’s more than sickening. It’s criminal.

At the time in the 1980s, 1990s, the patients’ questions were ignored, children were diagnosed and treated with large amounts of factor 8 after it was known to contain American prison drug users blood infected with the AIDs Virus.

After hours of questioning, the doctor did, when asked if he had anything to say, broke down and said, “It’s bad isn’t it, it shouldn’t have happened”.

Too right it shouldn’t have happened. Thousands lost their lives and children. No one lost their job.

How he did not lose his job is astounding.

Yet, here we are again. Using blood products supposedly safe for use in covid19 patients if the originator has recovered from covid19…is the blood being super heat treated to make sure no other viruses or diseases are present?

If you listen to this inquiry you’ll realise that there is no guarantee of that.

Thanks for reading.

worth watching as not being covered in national media

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.

Ugly Beauty – poem

Ugly is interesting

Staring is inclined

Just as beauty draws

It shows equality defined

Ugly shows a character

You’ve not witnessed before

Surrounding yourself with beauty

Can’t keep ugly from your door

Ugliness can teach you

Ugliness shows

Ugliness is not a choice

It, like beauty, grows

Ugly is a part of life

Becoming a decomposition of holes

Without it, you know nothing real

As, one side of life shows

Appreciate the ugly

We have it within

Knowing we all slide

Slowly, regretfully towards aging.

Fin

By Samantha unextraordinarybint Harris .

NHS Whistleblowers. The Reality.

Trying to keep patients safe in the NHS.

The Day I Met My Mother. Short real life story.

The Day I Met My Mum. Short real life read.

I was twenty two years old, married but separated and living in Brighton in the south of England when I first had news of my mother.

Maureen my mother lived in Plymouth, Devon, around four hundred miles from me. Even now, thirty years later, writing ‘my mother’ or thinking of her at all is proper alien to me. I am the beginning and the end of my family.

Knowing where you came from is a biological urge, but it is rare to find anyone in the same boat.

I’ve met many people who didn’t understand their fathers and some who didn’t know them at all but never met anyone else given up by their mother when they were one.

I had a friend whose mother left him with an aunt in Jamaica for eight years whilst she came to England to train to become a nurse. He said that when she did return home, she was like a stranger to him and he always had felt some awkwardness towards her but went on to recognise that she did it for him and his siblings.

I didn’t know how I felt about my mother. What did she leave me for? I suppose I should have been angry. But it’s not that easy. How can you feel anything when you don’t have a picture in your mind of who to be angry with? All I had was back handed remarks from my father and snippets of snide information from my step mother. My birth mother was a taboo subject.

If I’m honest, I don’t remember the drive down to Plymouth that weekend. It’s a journey I used to do more often but nowadays I barely remember the way and now would use googlemaps. Back then, I know I was intrigued and very nervous. Meeting my mother and Grandmother, Gwen, for the first time was an unprecedented life situation. A defining moment.

There was much to look forward to. Over the weekend I was due to meet other extended members of my family. I remember being happy. My partner, at the time was a man called Mike, he was an accountant. We thought we were in love. I was working as a model agent and instructor which kept me busy most days and two evenings during the week.

It was a weekend away. We were using his blue Ford Escort 1.4 for the journey. I loved driving his car. I’d never driven anything with less than three previous owners before and the journey down to Devon would have been quick as I always liked to drive fast.

Arriving at the bottom of Gwen’s tower block in Devonport, was unremarkable but forever indentured in my memory. The old worn heavy wooden doors gave way after I pressed the intercom to announce our arrival. The corridors and lift smelled as all council buildings smell; old, pissy with the faint taint of Special Brew. I live in tower block myself now and it is the same.

We arrived on her floor, the thirteenth, and buzz my biological Grandmother’s door. A small dark haired, wrinkled lady opens it and explains straight away that she isn’t my Nan. Her name is Ruby, and she’s Nan’s best friend. For some reason this flummoxed me briefly and Mike takes me arm. He gives me a nod of encouragement and we walked through the dark hall.

As we get to the end of the hall, a green frog, a soft toy security device, sounds out ‘rebbit’- making me jump but we follow Ruby through to where Nan is sat in her lounge.

I hear Nan laugh before I see her. Ruby sits down on the sofa nearest to Nan. My new/old/unknown Grandmother was sat in a chair to the right of me as I came through the door. In front of me were large picture windows looking out over Plymouth Sound. The view was breath-taking.

Photos were on every side and display collections of thimbles were on the walls. Grandmother Gwen’s short white hair stood up on her head above her pale forehead and almost invisible eyebrows. Her white skin was randomly spotted with light brown patches Her strong liquid blue eyes looked into my brown ones. We both had tears running down our faces as I leant down and hugged her for the first time ever, or at least for the first time since I was a tiny baby. She smelt of warm lavender air and talcum powder.

“Oh”, she said, wiping her eyes with a tissue from a box, “you look just like your photo, just like your mother and how I used to before the diabetes got me.” She referred to her huge size.

“Just like my photo?” I asked. I hoped that I didn’t sound as shocked as I was. My mind was swirling. They knew what I looked like. They had photos of me.  How could they know what I looked like when I didn’t know that they existed until a week ago? Had my father stayed in contact? I quickly saw it wasn’t that. New Nan proudly explained that they’d seen me in the local paper. They showed me the cuttings.

I’m glad I was sat down. I took it all in and Ruby made us all a cup of tea.

They all knew about me. They had the freedom to discuss me.

Nan chatted about biological Grandad and how much he’d loved Maureen and would have loved to see me again if he’d lived. I was shown boxes and boxes of photographs. Each one so important but all so overwhelming. I tried to remember all the names and places. What relation someone was to me, but it was too much. I couldn’t take it all in.

At some point I asked whether Maureen, lived nearby and then Nan said she’d call her for me. Then my grandmother picked up the phone and dialled her up on massive buttons. They spoke together on that telephone that was stood on a little wooden table near her floral arm chair. White doilies adorned both. The doilies were matching white cotton with embroidered roses. Nan gestured to me to come and talk. That was the first time I heard my mother’s voice. Stood on the dark reddish, brown, swirly patterned carpet, looking at my Nan’s elderly, eager face with the slimline plastic receiver in my hand held blaring against my ear.

What can I tell you? What did mum sound like? Well, there wasn’t tinkles and sprinkles of magic singing in my ears. Maureen had a heavy Devonshire accent and sounded like any other woman on the phone. She tells me she is at work and will come over when her shift finished.

I sit there for what seemed like an eternity, looking at black and whites, waiting to see what she looks like in real life. That really was the main thing I wanted to see. Shallow really but it’s the truth. I also wanted to know why she’d left me and what she was really like. Was she a tragic alcoholic who needed to party? I wanted to know her more than I felt any anger.

Finally, the door went. Ruby went to answer it. I looked at Mike. He looked back reassuringly. I was thankful he was there, being supportive, quiet and not intrusive.

My mother enters after the ‘rebbit’ followed by Ruby, who went to put the kettle on again.

Maureen stood across the room looking at me apprehensively. She said,

“Do you hate me?”

“No.” I replied. I looked at the woman who was my mother and my face cracked, so much emotional came forth and I cried heavily. I stood up and walked to her. I embraced her and she embraced me. She was smaller, fragile even. I carried on crying as we hugged. My desperate need for her to show me love overrode everything else and I don’t know how long we stood there like that just holding each other. She pulled away first. Telling me I had a sister and brothers. We sat and talked as Ruby served tea and my new Nan supplied biscuits.

I was shown the first photos I’d seen of myself as a baby. I was told my baby history. ‘Mother’ dropped me with my Aunt Chris on my first birthday so I could meet my father (Chris’s brother) and never went back for me. Maureen told me that she’d been breast feeding and they’d had to bind her to stop producing milk for me. She told me that I cried a lot. And that as my cousin was a Downs Syndrome baby.

It was difficult and their household could not cope with all of us. She was suffering with depression and didn’t want to make the journey back across Plymouth to get me. The longer she left it the easier it became then she met another man and got pregnant again. She tells me that it was difficult to love her new child, a son, because she was thinking about me.

We cried all afternoon. I see that she is similar but much smaller than me. The similarity is around the cheekbones and mouth, perhaps in the shape of the eyes. Maureen’s eyes are green so my browns must be from father. But the mannerisms surprised me. We both do similar things with our hands and heads when we talk or at rest. It was rather bizarre to witness. She tells me people call her Mo, but I decided to call her mum.

She invites Mike and I to her flat so that I can meet with one of my brothers and my sister. All fantasy that my mother had given me up to live a better life perished when I saw her flat and how modestly she lived.  My sister and brother were outstanding individuals and clearly close to Mo. We ordered fish and chips from the corner shop for tea.

My brother and sister were both blue eyed blondes so looked nothing like me. They tell me that my other brother, Matthew, is dark. I’ve yet to meet him to this day. In true Devon spirit my mother gives her bed to Mike and me for the night. The next day I meet the rest of my family from Devon and Cornwall and they make me feel welcome. I felt accepted but I didn’t feel like I belonged.

We were all close for a few years, Mum, her family and I, but by 2000 the relationship became sour, estranged and again, she is now unknown to me.

I’m glad that I know where I came from regardless of the fact that I no longer have a relationship with my biological mother and her family. I don’t belong to her tribe but because of her I never really belonged anywhere else.

Thanks for reading.

The End

Transgender vs Women

Transgenders need to start getting out of our spaces.

I’m not happy with the rise of transgender ‘rights’.

I’m not happy with the amount of children transitioning into a life of medical intervention.

There is no such thing as a male or female brain.

Green party called us non trans women…WTF?

No, we are still women. If you decide to change your sex that is your decision and I should not have to change my attitude and language to suit men (dressed as women).

Rose Parkie tells it how it is.

The Karen White story is one to look up.

A convicted rapist who identified as a women and was put in a women’s prison. He then went on to rape other inmates. The media referred to him as a woman. The authorities say he’s a woman.

Crimes committed by a man being recorded as ‘by a woman’ is wrong and does not give a real indication of crime of females.

This was one of the reasons why I left Women’s Equality Party.

Do no harm.

Watch “NHS Going Going Almost Gone: David Halpin at UKIP SW -High Res” on YouTube

Caught In The Net – Poem

Caught in the Net – Polypropylene Mesh

My anger today will not go away
It is so hard to live
Every movement a reminder of what they did

People assume choice

They only listen to their same voice

Paint me with the colours that they know

Advice to look outside

Oh, that wondrous place,

The one I would reside?

Have you ever considered it’s not my wish to hide?

In my mind I glide across the countryside

My feet barely touching meadows grass

As I breathe in deep of green and wooded forests

I jump the trickling streams,

Wandering in leafy, brambled, brackened dreams

I miss

That I can see but no longer touch

The things that I love so much

I close my eyes to remember the smells,

The feeling of air on my skin

The prickle of sweaty regret begins…

The anger wells inside, that stupid trust

On which I had relied…

Taken from the forest of extremes

Where humans do good things.

Yes, they took from me.

They’re crooks who take liberty.

From Thalidomide to HIV

Between the Witz family and the Public Health Authority

They maime us

They kill us

With impunity

In perpetuity

Because victims you will not see

The End

20th August 2020 by Samantha Harris (unextraordinarybint)

Fresh Horizons – A Poem.

In Callow Land

Owls screech

Down Fall the Roe

Submission  

Into light so bright 

Burning without

Moons healing shadow

 

Press hands 

On mercy knees

Smiles spread 

On face of He

Return to a place

Secreted in history.

 

We sense they come.

One sole hangs in the scales

Nought one shoe can do.

Beg Humanity to see

The beauty that surrounds us

In a leaf or a humbler tree?

 

So, although they silence me

And, cut me deep too

I bleed blue, a blackberry hue

I will come back and take

My land,

That’s promised you.

 

Your fear too real

Endangering

Life you would steal

I lay down the lavender

To placate, replicate

For You and Its late,

Ones at the gates 

 

Staring lusty eyes search for holes

Greedy to trade the souls 

They sayeth devil be blamed

Just Gods on side, and

Under his wing

Opportunists will hide.

 

Less married women!

Single breeders evil be.

Feed the children you have sown.

Become the Father

It’s your place to own.

Or should be! (If you took responsibility.)

 

The innocence of soul be free,

Stop taking it for thee.

Filling youths’ heads 

With catastrophe 

And calamity,

After calamity.

 

To survive I must desist.

Disappear into the mist.

My love, I leave you

Upon freshly axed logs

Scented of woodland fresh

Surrounded in bluebells

With honey and primrose breath 

Where dragonflies flutter

Unwritten but uttered.

 

The end

By Samantha unextraordinarybint Harris