No Better – Review Stapled Hemorrhoidopexy. Honest/Blunt.

A week ago I had my appointment at NHS colorectal specialist regarding my butt pain.

This is now the third hospital I’ve been seen for looking into this. I wish they’d share medical records… I’m reminded of how, last decade, I used to go from hospital to hospital over the bladder pain. Then I read an article which told me it could be the TVT polypropylene mesh.

I read through the doctors letters that I had and saw that it was being mentioned as okay when I wasn’t really aware that this was what they were looking at.

Each consultant said the same thing “no erosion of the TVT”. I know now that there is no possible way they could have seen this by these investigations and each one of them lied.

Taking you back to 2005 when I had an Hysterectomy for Endometriosis because of night sweats and crippling pain. I was discharged from the ward six days after my surgery without clearing my bowels. I was re-admitted five days later having still not cleared my bowels.

Four years after that I am having a Stapled Hemorrhoidopexy, which I am unaware is a new procedure. The story of getting to that point is a whole book of horrors for another day.

I wake after the Stapled Hemorrhoidopexy in what the medical profession disgustingly call “exquisite pain”. That is not the correct term. The correct term would be horrific pain that will never be forgotten, worse than child birth. I woke screaming like a banshee. There was nothing exquisite about it. Sick sacks.

If you look up Stapled Hemorrhoidopexy, the gumph will tell you it is a painless, minimal invasive procedure and that you will be back to work the next day. It is not true. Far from it. This is a cut and shunt that you will be lucky to be standing up comfortably the next week, let alone the next day.

It definitely doesn’t suit everyone and if you have Ehlers Danlos like myself I would recommend not having it and demanding the older technique with biological material and a gentle hand. A huge mechanical stapler being shoved up your arse is not easy to recover from.

I have not yet found out what they used to fix the cut, the surgeon told me it was a ‘composite ring’. I am in the process of getting my medical records because of the TVT Mesh case I am trying to bring against the NHS, I am trying to find what this ‘composite ring’ is made of…because of my butt pain whilst I’m there.

It’s been eleven years since I had the Stapled Hemroidplexy to correct my evacuation problems. It didn’t work. It never worked and now it’s incredibly painful and has been for a few years – getting worse as time goes by.

Care is bad for women patients in the NHS. Since closing the women’s hospitals we have to travel hundreds of miles. I’m in so much pain, it is incredibly hard to to travel to several different areas of the country for what is essentially an inch difference on my body.

Common sense seems to have left the building and thousands of people are left on benefits because of operations and procedures like this…it costs the government and the tax payer millions.

During my recent (Dec 2020) consultation I was not asked my history…we didn’t have time. My kind doctor told me that my upper and lower abdominal CT Scan, poo sample and blood results had all came back normal.

To me, that is instantly worrying. They’d done a chest CT too… I have bullous lung disease, or cystic lungs…clearly visible on a scan if any one looks at it. At stage four I have a heavy shadow on my right lung unavoidable to any eye let alone a trained eye of a radiographer.

As a patient being told that they can find nothing wrong when you are unable to sit down during the consultation is an unpleasant situation. I had no option but to have the poor consultant physically examine me. She would be sure to feel the rectroentrocele (or something) to show that I am not mental.

There is no understatement when I say it really fecking hurt.

Like last year at Watford General, it was very difficult and upsetting.

More painful was her finding something, checking with me that it hurt, and then pushing on it…the pressure made my heart flip and my ears pop. I tried to go through the wall on the other side of the bench to get away from her soul pressing finger.

The doctor handed me a wipe and some tissues. Getting dressed I wondered what she had found and how on earth I was going to get through Christmas in so much pain.

The doc has told me I am in pelvic spasm and given me some cream to use until I see her again early next year. I will let you know how it goes. I’m due to see her again in February 2021 – unless we are still in covid19 lockdown and it’s cancelled.

Thanks for reading.

Poor guy.https://www.researchgate.net/publication/51172093_Hemoperitoneum_as_severe_and_unusual_complication_in_the_stapler_recto-anopexy_for_hemorrhoidal_prolapse_Case_report

Letters 25th November 2020. RE Flu.

So, today I got a letter. Like the recent text messages, it tells me that I need to have my flu vaccine. It tells me that it is my responsibility to get it because of covid19…blah, blah, blah.

Good stuff you may think. I may add that I think vaccines, overall, are a good thing.

However, I am auto-immune deficient because of a foreign body reaction to polypropylene which was placed in my pelvic area during a hysterectomy for Endometriosis. I had my flu vaccine last year as I have COPD and Ehlers Danlos.

I didn’t know last year, that people who are immune compromised shouldn’t be offered the new adjuvanted flu vaccine and, it seems, neither did my doctor and I became very ill with flu over Christmas 2019. Two things –

  1. I shouldn’t have been offered this particular flu vaccine and should have had the normal one.
  2. My reaction to the new adjuvanted vaccine must not have been picked up by the system.

I called the GP. I spent three whole minutes listening to their automatic message telling me to go to the website and do the business online. Whilst listening I did try their online consultation but it is not possible to turn off the tracking cookies so my PC says no.

Anyway, I get to speak to the receptionist and explain I need a COPD check and to talk about the flu vaccine I keep being asked to have. A doctor calls me within the hour which is amazing as I just waited ten days for telephone consultation over my sore rectum.

We speak for around fifteen minutes. She checks my records, see the novel virus diagnosis and logged visits to myself last year after my flu vaccine. She has no problem checking the box which says that I had a reaction and not to be invited for it again. Brilliant stuff.

Having read the recent warnings from the American drug regulators I am wondering if the UK will also issue a similar warning. It is not suitable for everyone. Vaccines are not a one treatment for all and should be used on patients able to cope physically.

As always, thank you for your time.

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.

Big Indians Are Beautiful – Unity

I thought I’d share this one with you in case you missed it. You wouldn’t miss it if you lived nearby!!!

India Just Unveiled the World's Tallest Statue, and It's Twice as Big as  the Statue of Liberty | artnet News

This is the Statue of Unity in India.

It cost $420 million dollars to build.

The people forced to work the land it’s built on, protested because of the poverty and waste.

This is the package that our government is giving to India…

https://www.gov.uk/government/publications/profile-of-development-work-india

This pdf suggests that our, I’m writing from England in the United Kingdom of the British Isles, aid package to India is decreasing by quite a lot. In the year 2018 they are given £98 million (Guardian) and this year are due to get £46million.

After their government (Modi, I believe) has spent so much money building a statue when many in his country are without the essentials in life it leaves a sour taste in one’s mouth. You either need the money or you don’t to be frank.

Building statues twice the size of the Statue of Liberty, in a place where people would not generally see them, smacks of someone who does not know how to budget. So, all governments waste something but this guy is a completely different scale. As you can see.

This piece is not about knocking India. Like I say Indians are beautiful. They are suffering from terribly high death toll from covid19 and my heart breaks for how the mismanagement of the basics in their country will have led to the extra deaths. Plus we all saw on social media how the police were enforcing the most severe lockdown seen on the globe…

The main reason for the statue was and is UNITY. Now that the monster is built we should at least talk about it. For me, it is hardly a good looking statue but that could be because I’m not Indian. I’d love to know what others think, especially Indian’s if there are any out there who read this and speak English please drop me a comment or message me privately.

As a tourist attraction is it a hit or a miss?

Curiosity Killed The Cat/Ordinary Day – From the Album Keep Your Distance

Thanks for reading.

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

When At a Loss We Brits Have The Answer to All Dilemmas. Tea.

Today I will mainly drinking tea. I need calmness and to stay in my happy place.

I thought I’d share with you my current remedy, as I have a cough and tickly throat. The theory – or idea – is to keep the bacteria or virus from infecting one’s body you have lots of hot drinks. This forces the invader down into the stomach where it is killed in the acids there, rather than going into the lungs where it can become problematic. So, in this respect, tea is seen as a preventative medicine.

If you are a women who is pregnant or breast feeding the mugwort herb is not recommended.

This is my video with the instructions for making a comforting herbal beverage containing, mugwort, peppermint and camomile. The mugwort is grown in England so is easy for me to obtain, if you are purchasing do not worry about getting anything exotic, your local mugwort will be just as good as any other. Some herbs you may find cheaper and better quality abroad but generally locally sourced is best. Peppermint and camomile are easy to purchase on Amazon, check you like a tea before buying bulk amount.

Tea bags are not good for the environment as they can contain plastic which may be leaking into your drink.

No one wants that. Personally because of my situation with a mesh implant I try to avoid further plastic pollution within me.

I do still use teabags for breakfast tea… I’m not a saint.

I had an accident when making this film and dropped my camera phone on the floor face up. It’s a hot day today in London and the footage of me bending over to pick up the phone was painful to watch back over. I resembled a red, faced cockerel with jowly bits swaying hypnotically about my eyes and chin. I’ve edited the footage to remove this scene, leaving enough so the viewer can see some sort of accident happened.

 

 

 

 

The Indians and the Chinese have been trailing the mugwort herb for covid19. Mugwort’s been used for hundreds of years so there is a measure of safety, if used in the correct manner. Whether it actually works is anyone’s guess…

The Covid19 Drugs Trials – UK Recovery Trials. Are They Ethical?

“The UK is leading the world with studies of the new corona virus” says the news reader, “It’s ‘recovery trials’ are doing well”. It’s recovery trials? I do a little digging. Ah, this the name for the current drug trials for treatment of covid19 in the UK that are now starting to come to an end.

I found this, that some of you may find interesting, it’s worth watching all the way as I imagine it will be removed fairly quickly. This video does raise some concerns for the patients and the study. Listen to Dr Been (!) It gets interesting just before half way through, although it was useful from the beginning. I like his delivery and simple explanations.

 

One cannot help but wonder how this study was allowed and if the patients were really informed. I say this as I know someone who has died from covid19. After a day of attempting to get some paracetamol (there was a shortage) to get his temperature down he called the doctor. He had breathing difficulties generally and his chest was hurting. His temperature was sky high and he was sick.

An ambulance came, lots of things happened, but the main one was that he was put in a medically induced coma for his safety. No one was allowed to go with him to the hospital. I’m assuming it was same if not similar for the thousands of others who have died. Did he have drugs trialled on him or did he get the very best treatment he normally would?

Hydroxychloroquine was being trialled here on very sick patients. I have to agree with this doctor. This is not a good study. This is not ethical. As such the data is not reliable not to say how worrying it is for the British public who, unfortunately see the NHS as not being able to do them any harm. 

 

Welcome is involved which is nice to know. They are a huge organisation with great resources and are working with the NHS.

Oxford and their ‘pathways’ of treatments…thankfully started recovery trials before we got locked down in mid March 2020. How very organised they were. Let’s hope that all the patients involved would have died anyway of covid19 because otherwise this is bad.

Note, that they talk constantly of the drugs that they are studying. No one mentions patients other than where they are recruited from geographically, their demographic and that, stated very factually, there is around a 25% fatally rate in trial members.

It should be noted that these are drugs that are already licenced, not new drugs. These are known drugs being looked at under clinical guidance in different settings and doses. For instance Hydroxychloroquine is usually prescribed, cautiously, in out-patients but in these studies it is being given in huge doses at the beginning of admission to extremely ill people. This study took seventy-six days and recruited over a thousand patients.

Suspected covid19 patients are invited as well as actual covid19 positive patients.

The outcome of the studies is one of two. Does the patient live or not. So, these drugs trials are only measured by fatality. Who is looking out for the interests of these sick, probably disorientated patients? Again, is this ethical?

What happened to getting blood samples or mucous and studying them? What happened to diagnosing the patient and then treating the disease which has actually been found? According to the reports many of the trial members did not have covid19. If this is the case the ‘successful’ medicine is simply going to be licensed for treatment of covid19 if it does no real harm.

I long suspected that the UK was allowed to ‘become infected’ with covid19 in order for the NHS to be used to collect data from the infected patients to sell to pharma. But it looks like I was wrong. Big pharma control more in the NHS and the patients are now the new ethical ‘animals being experimented on’.

Thankfully the NHS is filled, mainly, with individuals that do care and for this reason we will all still continue to support the NHS.

Thanks for reading. Hope it isn’t the same Dr Been.

 

Ashamed of Myself

Today, and yesterday my thoughts have slipped

Suicide and thinking about it

Thoughts started sliding last week

The Oxford doctors called and told me I’m weak

Postponed my mesh removal surgery again

My lung disease has drawn a line

They’ll look at my case in four months time

 

Because of covid19 I must wait again

Regardless of my lack of life

Regardless of the pain

In four months time

I’ll still have lung disease

Corona virus will still be around

It will be the winter months

And again, I’ll be bound.

 

So yes, ‘Hooray’, the report came out

‘At last!’ Us victims do shout…

Matt Hancock apparently apologised

For all the doctors and healthcare’s lies

‘Sorry,’ they say, for not listening to me

The NHS is ‘sorry’ for my sixteen years of misery

Nothing changes though

I’m still Johnson & Johnson’s

Cash cow for eternity.

 

How clever of a nasty cosmetic firm

To make my bladder burn

To be able to sell me a pad?

Just switch on the TV to see the ads

Telling me incontinence

Can be ‘pretty’…

Who are they trying to kid?

They should be made to sort it.

 

I shouldn’t be in terrible pain

I shouldn’t be thinking, ‘how do I get through the day?’

I should be able to have a sexual thought

I should be able to walk

Embarrassed to let everybody know

When outside, I’m distraught

My mind is capable of one thought

Where is the nearest place I can go?

 

So yes, I’m ashamed to say

Been thinking about ending it

Today

Pain and disappointment

Stretch out long, before me

I search for someone to support me

Toss and turn all night

Vomit all day

This is not life’s way

I will NOT give in to it

I just needed to communicate

To stop me walking

Towards the gate.

 

Thankfully I have poetry, but is it going to be enough?

 

The end.

Sorry, this is very depressing but I had to do something to relieve what I am feeling.

By Samantha “unextraordinarybint” Harris

TVT mesh victim.

https://news.sky.com/story/nhs-must-apologise-for-dismissing-pelvic-mesh-and-anti-epilepsy-drug-patients-suffering-review-finds-12023175

https://www.bbc.co.uk/news/uk-wales-53323780

https://slingthemesh.wordpress.com/media-news-updates/

Black Lives Matter During Corona Virus

There are so many interesting things going on in our worlds right now.

A deadly virus called corona virus called covid19 somehow managed to cause thousands of deaths in my country and many people are arguing over how.

Our government, for the sake of our safety, rather too late to be of any real benefit, but with good intentions, locked down our societies to stop the spread of the transmissions.

During the lockdown, over in America, a man who had committed some terrible crimes in his past was being reported to the police for passing over a fake $20 in a local store, The store owner was unable to tackle the criminal himself as he was known to be violent and appeared to be under the influence of something.

The store owner, already out of pocket because of the $20 note, called the police. One of the attending officers was already known to have used deadly force on another man a few years earlier. This policeman’s previous victim was without colour and without a criminal record.

Unfortunately, the crook died after resisting arrest – the policeman again being over forceful and killed him.

What happened when the police came to arrest this crook I hope will be forgotten for ever. I’m not going to say either of their names. The policeman should never have been still in his job. If lives mattered he wouldn’t have been.

These sort of crooks and bad policemen to not deserve to be remembered. In the same way the slave trader Colson wasn’t remembered with honour. His statue was thrown into the river by the black lives matter movement. Now a hidden in the sea but it doesn’t change things.

A crook in America was killed and the world rallied for him because lots of money went towards that to happen. The blm movement spread faster than covid19 around the globe.

Then, it happened…in the middle of this covid19 pandemic, black lives matter, who do no justice to black lives, destroyed towns and cities across America with protests about the crooks death and caused many more deaths, directly through violence and indirectly through covid19 transmission.

Black lives matter say it’s all justifiable…well it isn’t, that is a rubbish argument.

You see your racism makes you think black people are oppressed as a race when they aren’t.  You are probably the kind of person who would be surprised to find sky scrapers in Africa. Your racism sees black people as poor and impoverished as a blanket fact. Now, I don’t see black people like that. I see each of them as individuals. Some oppressed and others definitely not.

Yes, of course black lives matter, as do white, brown and all the shades in between but that would never be enough for this movement. It was never going to be enough because this isn’t about black lives, this is about trade. Tear down our systems, make target countries weak and then drain what is left through poor desperate trade deals.

Supporting any slogan like ‘lives matter’ is good…put a colour in front of those words and you are being racist. One of the most maddening things about this group is how long they’ve been planning and plotting this ‘forced white guilt’ across the globe…so many depressed people being fed lies by our TV, media channels and health centres.

Black lives matter take no responsibility for Africa’s part in the slave trade and have spent a long time mis-educating people in America in their black only colleges and ignoring black on white crime in the media. The UK has similar problem with the increased amount of faith schools, family funded and business academy education.

The fact that many of the American black colleges now have to allow white students to help pay for the education of others is how some of this miseducation has come to light.

Some facts that any one supporting blm should know;

It was Canada and Great Britain which stopped the slave trade. Our battleships stood off the coast of Africa and forced them to stop selling their peoples…we didn’t succeed fully.

The last African country to stop slavery was this century in 2003 in Niger, north Africa.

The most enslaved people right now are white. Check out the trafficking figures.

So, my story is that I’ve been writing about discrimination within the housing policies and health policies towards Europeans and UK white born people for the last year, I know that racism does exist but it is very much aimed towards white people within our administrative systems…perhaps that is why is does sometimes spill out on to individuals in our communities as we watch them skip through the queue.

I’ve been a victim of racism by black british people and it’s about time we started talking about it…or, are we in England going to take the same stance as the Americans and let this thing get out of hand, pretending that the black lives matter cause is serious.

Time for the black lives matter movement to state what it is they really want.

For me, I like my country, I don’t want changes and any more segregation. I think the segregation we currently have is wrong and discriminative. I don’t think people should have a right to a special place where no whites are allowed…that is racist.

I think all vaccines should be available to all children. For example TB is rife within our communities but only people arriving from other countries or people of colour get tested or vaccines – our children have the right to be protected too.

I’d like a return to real equality which means my life matters as much as someone of colour within policies and health.

I would also like to see all schools be inspected and university’s to ensure this type of radical education and misinformation is stamped out before it gets worse than it is.

Simple truths, the bbc insisted that black lives were more likely to die from covid19 – although this is not true, however the bbc also supported blacklivesmatter to break the lock down and increase transmission of covid19…hypercritical or what?

Thanks for reading.

59,537 UK Deaths, Covid19

Almost 60,000 extra deaths have been recorded in the UK throughout this pandemic.

This comparison of deaths over the last five years is probably the safest figure, one which can be trusted. It is gathered by the FT. All my sources are listed below for clarity and reference. The graphic above is from UK Government dept. National Office of Statistics downloaded in April 2020.

The British government admit to 38,000 covid19 deaths at the end of May 2020. The difference is thought to be those unable to get a covid19 test, traffic accident victims, other accidents, domestic violence, murders, suicides and other illnesses who left it too late or were unable to get help because of Covid19 restrictions.

England is small, in parts it’s densely populated, but tiny compared to the USA, I am now personally horrified at what is currently unfolding there. As humans beings we were horrified at what happened in Wuhan in January. As Europeans we were sickened with worry about deaths in Europe, especially the huge death rate in Italy in February 2020.

In February and early March many of us were physically sick. Our children were sick and our grandchildren were sick but there was no corona virus testing in our communities and hospitals…unless you’d recently returned from China.

Now its June 2020, we’ve had 60,000 extra deaths and our government is slapping itself on the back as it’s now opening covid19 testing for ordinary people who have symptoms.  The governments news that it will be starting a track and trace application…which should be up and running by the end of the month…falls on a disillusioned and mostly recovered country. After all these are still swab tests…not blood tests.

England is most certainly reeling from what has happened. Many people are coming to terms with losing loved ones far too soon. As a population we are mortified. We are stunned at the thousands of elderly people, who fought for us during world wars, who were thrown under the Covid19 bus.  We are shocked at the large amount of our medical staff who have died and disproportionately huge amount of men.

The lockdown which our Government declared mid March was embarrassingly late and then publicly broken by ministers. Their misdemeanours were splashed over the media. Members of Parliament on both sides of political divide were caught cheating the lockdown rules, yet none of ruling Conservative Party have resigned. This has led to wide spread distrust of their moral fibre.

Boris Johnson, who leads the current UK Conservative government, is insisting no wrong doing in either case. Denial of his minister’s behaviour or that they locked down our country too late is done with no remorse and is rather frightening to continue to hear…when questioned the Government tell us to ‘watch our tone’.

The Conservative Party continue to insist they ‘followed the science’.  However, they seriously failed to follow the science and what was happening around them. They failed to see what was unfolding in China and then in Europe.

They also failed to follow their own eyes and ears.  I’d say they failed to follow their common sense but that is often beyond control – or is it? If they were stupid, would it be more excusable? If you did vote for them would you admit it?

Corona virus (covid19) is a killer, it was a killer from the start in December 2019. China warned us 2nd January 2020 and rather than listen and prepare for the pandemic or stop it’s transmission to our country, our government gambled with our lives.

Let’s hope, like it does appear, that covid19 is flu like and has pissed off for now. Let’s hope it doesn’t mutate throughout the next few months and come back at any stage. And, then let’s also hope that if it does, it returns with less fatal consequences.

Our government is keen to release lockdown, it’s keen to ‘follow the science’. Although the science has not been presented. This science, which they are following, seems suggest its safe to open some schools and send the primary aged children back.

Thankfully our government will not be using the usual fine system for children not attending. It will be left to the parents to decide. 

There is the threat from medical professionals that the vaccine programs may have to go elsewhere…there are not enough infections in the community presently. They write that  they are chasing epidemic hot spots within the UK but are not finding enough for their experimental covid19 vaccines.

That would be a shame,  thousands of people here in the UK have volunteered up their arm (and risked their health) for free to help find a vaccine.

Our Government will not, as yet, declare that any successful vaccine developed will be available patent free. The Chinese do appear to be closer to a final product which will be available patent free – the details will be made available publicly for other countries to make their own version of it.

https://www.ft.com/content/6b4c784e-c259-4ca4-9a82-648ffde71bf0

https://www.theguardian.com/politics/live/2020/jun/01/uk-coronavirus-live-england-schools-reopen-lockdown-eases-covid-19-latest-updates

https://www.thetimes.co.uk/article/coronavirus-vaccine-trial-may-need-to-infect-people-7nqbrjbq5

https://www.voanews.com/covid-19-pandemic/press-freedom-britain-under-threat-amid-covid-19-pandemic-journalists-warn

https://www.wired.co.uk/article/uk-coronavirus-vaccine-trial

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?

 

 

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.

Struggling to Thrive – Poem

Waking each morning a little more thin

I battle with despondency and peel myself apart

Staring at the reflection in the mirror

Thing

And wonder where I start

My day laying out before me, quickly drifts away

No real thought or means for it

There’s no anchor

No rules in play

The only rule is to survive

Relinquished is the will to thrive

Occasional smiles break through

Nods to humanity trying to get you

To understand me

To see.

Admit I’m blind too.

Perspective is such

And much

I see it all

My fall

I stopped believing I could win

I came to the end of the line

The longer I struggle

The more I am trapped

Running fox to a hole

I’ve little or no direction to go

Hunted, I hide

Back against the wall.

The End

Samantha “unextraordinarybint” Harris

Samantha Harris wrote this the day after she got her latest results of her lung function tests – which she knew weren’t going to be great but it’s still hard for her to adjust.

Samantha is grateful for all the things she does have but is human and still struggles with what’s coming and what she deals with. Perhaps other people can relate? She hopes so, as she feels incredibly selfish when she feels like this.

Everyone has pain but some are unable to escape it – for whatever reason.

24th September 2019

King’s College Hospital, London.

Why I am Frightened of Going into Hospital. Part One.

It was the pain from the cold that woke me. That, and EDS’ ability to withstand knock out drugs. I tried to raise my head and look around. Lying in a huge corridor and listening to a conversation between staff members going on so close I couldn’t avoid it, I’m shaking with the temperature.

I tried to turn my head to where the voices are. I had wanted to ask them to shut the door. My mouth opened to speak, no sound came out of me. My eyes met with a heavy set woman, looking at me. She was in nurse’s uniform, standing at the side of my narrow bed.

I looked around at my surroundings. There were twenty to thirty beds with bodies on. Some were so close to me I could have reached out and touched them, others were like boats in a harbour floating away, down the corridor. Barges of sleeping bodies. They were all pale, some grey and older and some more pinkish and young. All of us in surgical gowns of white with pokka dots.

Our gowns were all in different positions, but everyone’s knees, feet and arms were bare. The door at the end of the corridor was open and staff were coming and going through it dressed in heavy coats with bags, chatting to each other and banging the beds as they passed.

I was very cold, and I was shivering and in pain. I became concerned that I would get very ill if left too much longer in the environment and was feeling quite vulnerable, being undressed and all with strangers going passed. Also, I was a little worried why I couldn’t talk, my throat being completely blocked.

Needing to get a blanket on me, I raised my head and tried to talk but just a funny squeak came from my throat.  I was completely shocked when the woman beside me put a hard mask over my face and forced my head back onto the bed. All done without a word. Unfortunately, the mask was placed down on the ridge on my nose, a little too high for my prominent nose.

With nose squashed and mouth not working properly, the mask was now blocking off my air.  I tried to breathe in through my mouth, over and over again, but something was wrong. As I was breathing in, my mouth and cheeks were being sucked up into the mask like I was stuck in a plastic bag.

The more I breathed in the more the mask just came towards me. I raised my hand but gained no attention, so I put my hands up to grab hold of the bottom of the mask, I wanted to remove it, and breathe again. That’s when I felt another pair of hands hold my arms down by my sides.

So, many things were running through my head, mainly trying not to panic. I now had two nurses, both larger than me, holding a mask on my face and I couldn’t breathe. Neither of them was saying anything to me and I couldn’t talk. I tried to move my head from side to side to dislodge the mask, but couldn’t. Then I decided to just stay calm so maybe they would release it.

I looked around at the first nurse, deep into her black eyes and pleaded with her as best as I could…asking, “why?” silently with my soul… I can feel my lips and cheeks sucking up against the hard plastic around my face and realise I’m going to die as the pain in my chest is burning from lack of air. I can feel little pop sounds in my lungs and ears.

It’s amazing how much you can think in a moment. I realised that it had to be obvious I’m not breathing properly as there is no gap between my face and the mask. It is so hard on my face that my facial skin is stuck to the inside and I can no longer pull breaths as the bottom half of my face is glued to the inside of the mask in a vacuum.

No response. She just stared back at me with nothing. Then self-preservation set in.

I bring my legs up and attempt to kick the pair of them in their heads, to get the mask off. I may be ill but when you think your life in on the line it’s surprising the amount of strength you have. In fact, fighting is one of the few things where being hypermobiles can be an advantage. Our range of movement from a cold start is amazing, and I was able to get a hand under the mask.

The struggle continued for some time with me gaining the odd breath between them forcing the mask back on. My voice, although not working, is making a strange sort of noise, high pitched very quiet squeaks and I kept trying to look in their faces but my head kept being forced back.

Someone came to try and hold my legs, and another person held my shoulders, and then I really went nuts because I thought they will kill me! I was then fighting in the air above the bed with them, I was moving around so fast…I wriggling and kicking out hard in every direction.

Obviously, I came off worse with a damaged nose and bruising all around my throat, neck, shoulders, arms and legs although I didn’t know it at the time. What did happen at the time, was the ‘struggle’ did get attention. One of the men I had kicked, shouted at me, it caused an anaesthetist, in a white lab coat to come out of one of the rooms and shout, ‘what’s going on here?’

I’m grateful he did.  As he introduced himself, the first nurse backed away from my side, reached down under me and turned something – almost instantly, I could smell something coming through the mask lying near my face. I looked at her and she looked straight back at me.

As I was breathing fine without, I indicated that I didn’t want the mask. It was then I was informed that my oxygen levels had been low, so I had to have the mask on. I was obviously visibly upset but I still couldn’t talk or explain what had happened.

The anaesthetist stayed with me whilst I calmed. He told me my throat was sore from having a pipe down it during my surgery. He watched the original nurse place the mask back on my face and then he showed her how to do it properly without blocking off my nose.

After the white coated hero had left the first nurse looked down at me, telling me she hadn’t had a break for seven hours…

Thankfully, although I did want to say plenty to her, I still couldn’t speak.

Doctors Don’t Get Paid Extra to Think

proof that munchausen is not a safe medical diagnoses

People do not get fair treatment within healthcare services. Equality was fought for and won and it should be delivered across the healthcare services in the UK. Only it hasn’t worked out like that.

It seems the medical and psychiatry services have been playing with people’s lives all over the world, with Britain taking a leading role. Children are removed from women diagnosed with syndromes that doesn’t exist.

Children suffering from Ehlers Danlos have been removed from parents too. Lots of interference in family matters because of medical diagnoses. This is because EDS is not taken seriously in our country. It’s linked with depression and mental illness rather than the connective tissue disease it is.

There are whole families, generations, ruined by the interference of doctors telling family members that their mothers have Munchausen syndrome when usually they are suffering physical and mental trauma from childhood sexual abuse or plain old rheumatism – which is a well known medical health problem, not a mental illness.

I feel that it is time for academics and scientists to get things together and start being truthful about how arbitrary these diagnoses are. At the moment family courts in the UK are in crisis with the amount of children at risk of being removed from families who have not had proper advice on looking after their children.

It is time for patients and families to start questioning doctors. It’s becoming easy to think that some doctors keep you ill – they are not interested in making you better and you not coming back to see them. One of my favourite sayings about doctors is that they don’t get paid extra to do their jobs.

Fibromyalgia is another such diagnoses I see a lot of people diagnosed with recently, myself included – although I immediately argued it. The over made up, cosmetically inept female Shi Lankan doctor telling me that I do have fibro as well as Ehlers Danlos…in her fifteen years of experience.

I told her I have met other people with fibro and they have all over pain, including headaches which I do not suffer from. I again point out that I have had this rib pain since 2009 and it is getting worse having spread from one place under my right arm to now going across my back to under my left breast – basically in the exact place I had shingles when I was twenty years old.

I tell her I feel it could be pleural membrane infection of some sort or a breakdown of the tissue between the ribs as in common with Ehlers Danlos sufferers and of course I have the added cystic lungs. I ask again for some steroids and tell her I had just started HRT and already am feeling the benefit with my thought and emotions. I tell her it is the same pain as when I was diagnosed with pleurisy in my twenties, it just is a larger area.

The doctor completely ignores me. She declares that I do have Fibro she has decided I have it and there is not a chance that I can stop her. The fact I don’t have pain all over or headaches does not worry her at all. I realise when I get the follow up letter that this diagnosis will place me firmly back into ‘faulty pain receptor’ category in medical terms within NHS England’s treatment plans.

Having this diagnosis opens the gates for me to be offered all sorts of neurological pharma wonders like Gabapentin and Pregabapentin…and lots of other mind altering drugs which I have already done thankfully so won’t be tricked into again. I have mental health issues and it’s hard enough to keep a hold of my emotions.

However, it does make it hard to claim benefits. It could be seen as you could work – as you have no reason for your pain. Thankfully I have my paperwork from previous years proving this is not the case for me but how many other people keep all their medical letters?

Chronic Fatigue Syndrome is another umbrella term for all over pain with no reason – however, full test aren’t done to exclude other things…these are arbitrary decisions that the doctors make based on the latest guidance from NHS England rather than actual medical knowledge.

Symptoms of all over pain. Apparently a ‘faulty pain receptor’. It is linked with mental health as there is no reason for the pain – no reason for the pain. Many patients find themselves in ‘well being’ classes rather than any real treatment.

Let this simple statement sink in, apparently someone is experiencing pain for no reason with Fibromyalgia. However, the doctor will supply pain killers and other drugs for this condition and more importantly it is linked with depression so antidepressants are often also offered as course of treatment.

For me it is not the correct diagnosis. I don’t have muscle pain. I have joint pain. I have nodules on my hands from my swollen joints. I have a huge amount of pain around my rib cage, the pain radiates from the tissue between my ribs. I don’t get headaches. I do faint and suffer from fatigue. I also have Bullous Lung Disease, around 25% of lung function left and mitral valve prolapse and thickening of the left ventricle of the heart.

I don’t have a faulty pain signal – I am in pain. I also have large mass around my bladder from the TVT which is likely to be causing an auto immune response in me as I have been diagnosed with interstitial cystitis for last fifteen years which is also very painful – oh and I have endometriosis and a faulty jaw.

I almost faint every time I fart from the pain caused from the Stapled Hemmoroidoplexy and the TVT wrapped around my bladder. I don’t just have Fibro. I am in pain.

I complained about the diagnoses at the time and afterwards I phoned and complained to the clinic. Nothing happened. I thought I’d argued and proved my case but no. Now her diagnoses has trumped all my other diagnoses, including my hypermobile jaw which dislocates regularly and my stomach problems including peptic ulcers and my extremely sensitive, painful, ears.

But no, it’s none of those things I am suffering from – all the other doctors, scans and tests are wrong. According to this new doctor I have a Vitamin D deficiency and Fibromyalgia. When I looked up my results I found that my blood levels weren’t that deficient in vit D according to NHS guidelines. I had a raised CRP level which ought to be investigated but she hadn’t pointed this out.

It all falls on uncaring and corrupt ears. Now when I get taken into hospital they look on the system they see depression and fibromyalgia – it doesn’t help when you do actually have mental health problems too. So I am ignored on medical grounds because of this diagnoses that is ill founded. I am one of many being treated in this manner, it means they can officially ignore me.

Basically it’s one service for some a great service whilst another gets treated appallingly. One person comes in walking with chest pains he is taken to cardio and hooked up to the monitors. Another comes in with chest pain and is asked if she is anxious and why she thinks she needs to be there…

These common misconceptions about men and women serve no purpose other than to deprive women of healthcare services and give men a false belief that they are better. The most common killer of women over 50 in the UK is heart disease.

It’s not cancer or drinking alcohol, it’s heart disease. We need to start demanding to be taken seriously and not be tarnished with these old outdated medical opinions that only serve some interests.

If you use the NHS England’s BMI checker you will not get the same advice regarding health if you are obese and white/other as you would if you were of Indian or Black African descent. We have to stop treating people according to their ethnicity, as race is not a defining characteristic of health.

We all have to pay into the system when we work. We have the right to treatment. When people have complex medical history, this should be taken into account, not just the last doctor that was seen. This doctors decision to diagnose Fibro assured a total denial of service when it happened to me as doctors in AAU refused to look past the last diagnosis.

The medical healthcare systems such as NHS England and pharma companies and hospitals must treat us all the same regardless of race or gender. The inequality is becoming too much. We need to start pulling back against the move towards the dark ages.

No to hysteria, no to new Munchausen syndrome diagnosis and real treatment for people in pain. It’s time to treat anyone in pain – regardless of gender, race, age, disability, colour or nationality. We are all humans.

I Am Bare – Poem

Everyday I wake, in pain

I’m reminded of your gain

I bare my pain

You continue to live

To thrive

To be Alive

Whilst I simply survive

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About NHS consultants, policy makers and shakers. At some point you should recognise that often patients have more than one thing wrong with them…it’s not that uncommon.

The mistakes that have been made have been life altering.

There needs to be a proper investigation into NHS care of Ehlers Danlos sufferers.

Lab rat still living. No follow ups yet.

Woman over 50, still rolling along.