THAT CHRISTMAS

That's what it will always be known to me as .. 'That Christmas'!

That's if I survive long enough to be able to reminisce that is.

Woke up and it's only Christmas Eve and I woke up with anxiety. My daughter was asleep on the other sofa but she said something strange when she woke up.

"You was having a fit when I woke up earlier" and I was confused and said "Eh?"

I was told I was shaking. Something to tell the hospital I guess. Whether it's connected to anything to do with my heart or chest I don't know. There is also the fact that I have been waking up almost every morning with anxiety and I wonder if it's connected to that but separate from the heart or indeed maybe connected in a different way?

As I said .. something very bizarre obviously goes on while in asleep because I wake up with anxiety before my conscious brain had even had a chance to process any worries or concerns.

Christ, in feeling it before I even realise I'm still 250 miles away from home!

It's just there.

Whenever I'm affected by it is always just there first thing in the morning.

But Fibromyalgia is the lack of a certain type of sleep .. a deep sleep where everything gets sorted, repaired and memories cleared out.

So maybe the brain is still going through the worries and so it reaches a tipping point after a certain amount of time?

Oddly my sister informed me not long ago that she gets something similar when she is stressed about something.

With me though it's always strong or over the top ridiculous.

There are always three things you absolutely pray for .. if you know your stuff ..

Sodium oxybate which is the only thing to deal with not just the anxiety but everything else to do with Fibromyalgia. This may also be the case with Chronic Fatigue Syndrome and Chronic Regional Pain Syndrome? Had that theory for a while now.

The second thing you pray for is to be given a drug that actually works on the anxiety. Nothing much has and presently Diazepam is used but has not been enough on occasions.

The third thing you pray for is death.

Yeah it can actually be that bad that you just want someone or something to flick the switch and turn it all off.

There are other things that can stop it.

The situation and sudden loss of finances while trying, or was planning to, work my backside off, started the situation off.

Now this has three chances of altering .. sorry, no four. But they are all up in the air right now and not looking to appear to be working just yet.

But I'd hoped that the developments would be enough to calm things down. The trouble is they do but it only ever seems to work for somewhere between a couple of hours to around a day or two.

I think the issues here is that the worry that they will not work out starts to creep back into your mind. This is subconsciously and nothing you can do about it.

It's become clear to me over the years that the interior of the brain is a very delicate and potentially hazardous and painful playground.

The brain is the nerve centre of everything and is where pain is processed.

When people first started to realise that there wasn't anything wrong with the feet or other parts I experience pain they would have the attitude "Oh well there's nothing wrong then?!" Where I would then point out that the was and that when their for hurts is the brain they processes it. If it's doing this wrong then it doesn't matter if your foot or feet actually have anything wrong or not .. the end result is exactly the same. The pain is the same.

At first they would look confused until I explained .. slowly that they might rub their foot in pain but the signals are received in your head. If your brain is receiving the signals then it's receiving the signals whether these are correct signals or false signals.

It's like the opposite of those stories you hear about people who are drunk and walk home with a broken limb without realising it. Those signals were not being received our dumbed-down because of the alcohol.

In fact I've wondered often if alcoholics are people that had conditions that were not correctly diagnosed or sorted by the NHS? It would be bloody typical of their attitude of this turned out to be the case years later.

I've thought about different drugs to stop feeling like I do. Mostly I always tell myself to hold out before trying drugs or thinking about suicide.

But there is only so long you can last. There is only so long anyone can put up with this. No one is impervious.

I'm low or out of diazepam and am tempted to look .. memory issues see? Can never remember what I've got of anything. There aren't many, that's for sure. Some pills I'm missing completely though there may be some at my flat I've not been able to get back to? I'll try to do that.

But in three days I have a hospital appointment for some tests and I have to be sure not to take any diazepam that day. I actually need my chest issues to play up .. which they should. They do most days. Well .. since I've been here they have. Well .. since I realised I was going to be missing around £3,000 to £5,000 in money I was expecting. I really do wish I'd known that one! Or hadn't had £35,000 stolen from me because I wouldn't have ended up feeling like this.

One of my family has been told to report the inheritance theft to the Police and maybe they will and maybe something will be done about it?

But it's a shot in the dark and not about to happen anytime soon. I don't expect anything to come from it, if I did I wouldn't feel like I do.

Same applies to my PIP being reinstated though that would be quicker it's still a month or two away.

So you still need something in the interim and a plan in case it doesn't work out.

Then there's the carer idea which was why I came here.

It was obvious that my daughter had some of my Fibromyalgia symptoms and they just kept on coming. The feet being affected is one of the few that she doesn't have.

She got home with a panic attack just two days ago.

Now she spent last night talking to a nice lady that lives next door. She had been through she pretty horrid things, used to be a teacher and had a little girl in a bad way. She also seems a little different from the norm around here. Polite, reserved and well spoken.

I was told last night and still need to ask what was said but she went mad when she heard about the situation.

Now in not sure how she is going to do it, what with her own issues and vulnerable child, but she said that she was going to go down to the .. well, council I presume and get them to sort out this bare house for her and help her move home.

It's been a secret panic of mine but I've not mentioned it to anyone.

I also don't really have anyone to talk to, visit our even anywhere I can escape to, to take my mind off things. The flat doesn't work because I'm alone with my new found fears.

The three cancer scared, the Fibromyalgia, two cases of Autism from four, puberty and a house nowhere near suitable.

Then there are my heart issues and my blood pressure issues which are running riot lately.

My father died at 56 and it's clear now that it was blood pressure related. A burst aneurysm and the blood pressure made worse by a certain large TV corporation setting him up to be something he wasn't. They knew it too.

But my symptoms are far beyond that of my father's prior to his death. My grandmother died of the same Fibromyalgia related thing and oddly her symptoms were similar to what I'm having now and have had for months.

There was one thing they had in common just prior to their deaths .. their legs, or more specifically lower legs bloating. A water retention type thing.

Every now and then I glance at my legs or had expect my trousers to feel unusually tight. If I do I won't have long, that much I can tell you.

My grandmother was supposed to die of heart failure and my father's aneurysm was near his heart and burst.

I've got my grandmother's leg issues and both their chest issues.

Plus I have a shed load of things that they didn't have .. at least I think?

So this is only Christmas Eve .. a bunch of stuff was opened and the room was a mess with trodden in biscuits, because they cannot take them out one at a time. Well some of them don't. Another one asked me to open another tin of biscuits four times and had already had a load of them given to him by his other. I guess he thought no one would notice that he had eaten most of them if he split the requests of tin opening among the two adults.

God knows what tomorrow is going to be like?

I normally use the cupboard under the stairs, not not in a Harry Potter like fashion .. to access things like my pills. But my daughter has not liked it being opened as it has been filled with Christmas presents. So I tend to wait until late and then I forget things. Especially at weekends and holidays when the kids are allowed to to stay up much later.

At the new house I might have a box room to use for as long as I am around anyway?

Along with the anxiety and worries I am praying I do not have a repeat of yesterday which was .. bloody horrendous. I have been worried about incidents like that since I have been here but though I had a couple .. yesterday was .. bad.

At least the new place .. of we ever manage to get in there .. somehow .. there will be two toilets so I do not have to worry if I have to die slowly in a toilet for several hours. Well .. other than .. dying in a toilet for several hours in pain.

Friends came over for half an hour .. turned out to be a couple of hours and a few drinks. Too many .. or rather the wrong drink for my daughter who had a strange chest pain and numbness down her arm who then disappeared as she went and laid down on the bathroom floor for ten minutes .. after taking an anti-histamine tablet. I thought they were just for hay-fever but then the hospital recently sent a letter prescribing them .. now I need to look them up. Told they are good for heart and chest problems .. be bloody great if they work.

I have told visitors here many, many times that people simply do not get it and therefore neither do the readers .. so do not get told by me .. how about a quote?

However, there is evidence that chronic pain and illness put patients at risk for suicide. An illness like fibromyalgia or chronic fatigue syndrome, which is often doubted or neglected by the medical community, the public, and sometimes family and friends, can present unique problems. Patients with FM/CFS can become victims of isolation and despair.

-http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide

I also stated previously that I have believed for a long time now that Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Chronic Regional Pain Syndrome are linked and may well be the very same thing but at different levels?

How about a link mentioning all three?

http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide

One of these days many people are going to realise that I get things right a great deal and as near as damn it the rest of the time.

Due to the fact that antihistamines also can play a part in anxiety control I have come across some websites to do with .. anxiety and found some .. things .. organisations and I m going to try and contact some because this needs .. sorting!

THE INVISIBLES & THE VANISHED

There are those of us that have a hidden secret.

To look at us it would never occur to you that there was anything there, no different to early stages of cancer, but just like the killer disease it is there. We know this. Because we feel this. All the time.

But to a number of public services the government wanted to save money with they decided that everyone in the UK is stupid and that they could go after these people and that because you cannot see it, it would appear to not be there. Other simply would not care .. as long as their taxes go down and I have stated over and over again .. taxes only ever really go up. Certainly in the long term.

How many years have we been at this now? Seven? Eight?

Wow .. it has really done its job, has it not? We are well free of the financial troubles .. oh wait? I think Vince Cable just said in a little speech that things have been getting worse and about to get worse? Crime has gone up by its largest amount. Exactly as I stated it would. The savings and kicking in the groin of disabled people has done absolutely nothing. Even with over 100,000 people dying as a direct result of that kicking (Google Calum's List) they still have not done anything.

I stated, when David Cameron first announced Welfare reform, that I was all for it and behind him when he stated it was fairer and provided that was his intention. But I also stated that I could not but feel that he was just going to create a craftier way of going after people with disabilities that was even worse than that of Tony Blair?! I just could not shake that feeling and I was around 80% convinced they would go after even more conditions of the list of disabilities and I was right.

If your on a list of disabilities and that condition is a registered disability then that is that. It is not called a disability when you can actually walk and get around normally just like everyone else. It SAYS disabled because it MEANS disabled.

Except when your a Tony Blair government or worse still, a Tory Party government.

Well the number of people that have died have exceeded 100,000 some time ago now and they show no signs of slowing down.

They are doing this for the good of the country.

Funny that as I thought the country was the people of said country. Without any people a country is just a land mass. Well that is my train of thought and always has been.

So they think the best way to help the country is to actually very deliberately go to the weakest section and either make their lives a fucking misery for years and years with the hope they will kill off a few hundred thousand and therefore reduce said bills?!

Yeah that seems to be working out just fine and dandy, does it not?

Let us forget about a knee problem I have that was spotted, tested and diagnosed by the very same Guy's Hospital Doctor/Specialist that diagnosed my Fibromyalgia .. I have Fibromyalgia.

I also self-diagnosed that Fibromyalgia long before I had it confirmed at Guy's Hospital.

Well .. except .. I had been nagging General Practitioners and hospitals about it for over 13 years or more. Let us look at the tests and the departments I went under ..

Departments

• Rheumatologists x 3 (Whipps Cross, Wanstead, Guy's)
• Podiatrists x 2 (Forest Road Med Centre, St Michael's)
• Orthopaedics x 2 (Chase Farm, Barnet)
• Bipedal Mechanic (St. Michael's)
• Foot Specialist (Barnet Hospital)
• Lots Physios that did nothing (Wanstead, Whipps X, Chase Farm)

Tests

• Tarsal Tunnel Syndrome
• Nerve Conduction Studies
• X-Rays .. at least twice on feet alone

Condition Drawbacks

• Half Dozen to Dozen or more areas or more of pain
• Can include several areas of pain in feet including Plantar fasciitis (IN REVERSE!)
• Short Term Memory Loss
• Body Temperature Regulation bad (either trouble with cold or heat)
• High Blood Pressure
• Fatigue
• Sleeping is crap, can have periods of insomnia that last for months on end
• Nervous Breakdowns from stupid things
• Rubber Leg Syndrome
• Restless Legs Syndrome
• Restless Arms Syndrome, yes look it up!
• Uncomfortable lump feeling under arms when wearing clothing
• Tightness in skin over breast plate
• Skin conditions in several areas of body (I have 4 but feet have started to have .. signs)
• Possibly causes my Postural Hypotension (not good when you have abnormally high BP sometimes over 200)
• Chest Wall pain (you really don't want that) could be caused by Fibromyalgia
• Could be behind my back pain or it is a knock on effect

Except if you look at me I am fairly fit and muscular ..

Because light exercise or exercising parts that are not hard can reduce the symptoms frequencies and intensity.

I keep looking up at those different bullet points and I know I am not recalling things. That test section I am sure should be over double that length .. oooh X-Rays, lol.

A brother phoned me recently and stated that Fibromyalgia has now been declared as a long term illness, which is odd as the NHS nor the DWP have contacted me about this.

I am having a hard enough time getting anything out of a solicitor who is supposed to help me out with this, the disability side which could make or break me becoming self-sufficient over the next year, see upcoming post about that called 'The Last Days'. They really will be the last days as it has now been confirmed. Kinda. Lol.

Anyway after being told this about Fibromyalgia over a week ago I finally remembered I needed to 'google it'. I only found a BBC report that stated that Fibromyalgia has been declared a long term disability in Northern Ireland?! Getting closer. Lol.

As I said I try to exercise because deep down this condition terrifies me. Because I have been told by a specialist that you can end up so bad you are bed ridden. The light exercise and the pacing is the key to stopping this from destroying your life completely. Bloody hell I even saw a Paralympian, I think it was, in a BBC report that stated they had to crowdfund a damned wheelchair!

What we actually have is a society that is behaving like that as they did in Medievil times but are trying to hide this fact. Where they weak die off and the strong, and those with money, survive. Good attitude that. So why even bother having hospitals at all? I mean all hospitals, I really do and I mean private ones too. I mean if the attitude that the weak can die is OK then it should apply to all, am I right?!

How much of a negative effect all this has had on medical research, God only knows!

I still maintain that Chroniic Fatigue Syndrome, Fibromyalgia Syndrome and Chronic Regional Pain Syndrome are actually one and the same thing. Just different levels of the condition when it comes to pain with CFS being the early stages, FMS being the mid stage and CPRS being the extreme stage.

There just seems to be too many similarities between them, outside of severity and a few symptoms, to just be coincidence. So much so that I have wondered for a few years now why this has not been spotted or even suggested by anyone in the world of medicine? Have they just missed the obvious or are thy deliberately letting them be classified differently?

Although it was somewhat .. complicated I do know someone that was refused both DLA and PIP despite having quite bad Chronic Regional Pain Syndrome. Yeah did not look good for everyone else with these nasty conditions.

Fibromyalgia Syndrome Declared a Disability in Northern Ireland ..

http://www.bbc.co.uk/news/uk-northern-ireland-37424804

In America ..

http://fightfibromyalgia.net/fibromyalgia-is-declared-as-a-new-long-term-disability/

Some get help .. some do not and those that do being kicked off disability one by one in the UK ...
A Forum of Sufferers ..

http://ukfibromyalgia.com/forums/viewtopic.php?f=11&t=13756


Now what did I say only recently and have stated for five years now? I stated that they are not ignoring the obvious ones, the NHS & DWP, but ignoring the less obvious as well as going after them!

But, hey? As long as they look good, right? As long as they save money and get the UK out of trouble, right?! Except they have been doing this for years, successfully kicked me off twice now.

"Targeting those with invisible disabilities undermines the fairness of benefits reform" - Telegraph

http://www.telegraph.co.uk/news/2017/02/28/targeting-invisible-disabilities-undermines-fairness-benefits/

HEY NOT ME

Didn't know this one ..

ME, or Myalgic Encephephalomyelitis, is actually Chronic Fatigue Syndrome.

I'm not, however, surprised to read this ..

"Carers of Children with ME accused of fabrication'"

Yeah .. I have long since established that it is my belief that Chronic Fatigue Syndrome is mysteriously linked to Fibromyalgia Syndrome which may well also be linked to CRPS, or Chronic Regional Pain Syndrome.

Because Fibromyalgia has the symptoms of Chronic Fatigue Syndrome with a few extra while Chronic Regional Pain Syndrome seems to have all of Fibromyalgia Syndrome's symptoms but with a few extra.

I've also spotted and discovered that sleep also seems to be an issue with all three?

The link about CFS or ME below mentions sleep while Fibromyalgia is at least in part down to non restorative sleep and someone I know that suffers with CRPS has spoken about issues with sleep.

But if you look at the BBC, spit, below they talk about how they get accused of lying. About the condition.

Here is a tip ...

They are the ones lying!

There has been a drive that's been going on for over a decade to stop diagnosing certain conditions where they can get away with it. Also where the patient is not in danger of dying.

Then what started to around 8 years ago was to work there way through, the NHS this is, the more obscure or less known conditions and decide they are not disabilities any longer.

Around 8 years ago or so they leapt on those suffering with mental health issues.

That was low .. real low .. attacking those that cannot defend themselves in many cases.

Disgusting and amoral.

Then about two years back and after telling a Fibromyalgia charity no less than twice that they accepted this issue was a debilitating and progressive illness they then went after them.

Oddly the charity had remained quiet.

I have no doubts that starting over ten years ago they systematically attacked patients in groups, one condition at a time.

This theory was stated to a psychiatrist who agreed and stated that she did not know. She then said she realised one day because patients kept telling her stories. She then checked the clinics books and said that financial support had stopped for everyone on the clinics books.

"No one warned us" became immortal words in my battle to expose this crap.

I have absolutely believed back then they were going after conditions in turn and there would be more.

This behaviour, under Tony Blair I might add, strongly suggests, when I think about it, that Tony Blair knew many months before the public did that a financial crisis was coming.

I very much doubt that they have stopped on this march to remove health conditions that leave you disabled from being under the term of disability.

They also worked towards this by removing the actual word of 'disability' from the welfare state altogether.

Weeell of the current Tory party can shit on each other to climb the political ladder to get to the top it should be no surprise they would treat is far, far worse.

What a great team of amoral idiots to represent us, the British people, to the rest of the world?!

But then maybe many countries have the same issues and don't realise it yet so when they meet up they all have a chuckle at our expense?

Lol.

If you have come here for the first time and think this is the only post on the subject of the corruption within the NHS or one of just a few? Oooh noooo. 

There are many, many dozens of posts by me and a shed load of evidence.

Even if you find all of it I will warn you now .. it is by no means all of it.

Lol.

I saw this on the BBC and thought you should see it: Carers of children with ME 'accused of fabrication' - http://www.bbc.co.uk/news/uk-england-40407174

THE ILL & THE DREAD

Oh I do not like the feelings I have this morning.

It is not nice at all and very, very weird. I feel a bit ill and I feel a bit of anxiety and it is the strongest feeling of anxiety since I started taking those Propranalol beta-blocker pills.

That is not encouraging.

At the same time I am having real difficulties doing my usual things just as I feared I would when I was basically hoodwinked and conned into looking after someone's pets. Before they went away I was visited two days before departure and was asked to put the kettle on and I answered “Sorry, I have forgotten to get milk for three days”. Well they left on Saturday and that was two more days and it is now Tuesday and that is another three more days and guess what? I do not have any milk still.

That is how it can be.

On every other day I am not at the house I keep panicking I have forgotten something at the house.

The first day I had to get out my second bike and I forgot it was likely it had a puncture. Why did I use my second beaten up bike and not my shiny newer bike? Because I knew I would not be able to do the jobs I was hoodwinked into doing without it. He went away a few months ago for a week and I did exactly the same thing then, went there every other day and it nearly killed me. Despite the fact he lives fairly close to me. About half a mile I would say. Ten minute or so walk … hard to judge because I do not walk reasonable well and always limp. Walking, or rather limping, on consecutive days is normally bad news for me. I have been lazy as I have not used my bike much this year partly because despite being at either ends of the house they are both a pain in the arse to get out due to my house. Partly because the weather has been utterly terrible.

So I got the bike out on the first day they were away and I changed the inner-tube. I cycled to a different friend and chatted for a few hours before going around the house to feed and water the other pets. He has a son that is a bit .. of a problem and not really with the rest of us when it comes to common sense. What he used to do was drive me nuts to get into the house when I did this several years back. One of the reasons I fell out with him for several years was him expecting me to do all this crap for him, the friend that is. I remember that before my friend had even reached Crete I was getting phone-calls about getting in the house.

This son is a problem, he flies up and down the stairs and in and out the house letting doors slam or not closing them properly. It is like he literally has a one track mind. It was really weird to witness. My friend was always going on about him and at first I thought he was being over dramatic, but no. He would often leave the house and leave the door wide open, and I mean leave the house … go off to a mate's house for hours. He used to smoke Cannabis a lot and my friend thought it was all down to that and Cannabis destroys your brain, as some would love to like us believe to suit there needs. I pointed out that it was not this and that his son probably needed to talk to someone and be investigated. Putting it as politely as I could.

This kid also thinks he is going to be a big rap star. He is well into his twenties.

He also now actually has a girlfriend and even a child with her and they live elsewhere but for some reason there are a couple of important things of his left in his old bedroom.

So on the Saturday morning before my friend has reached Crete and I am changing the inner-tube on my bike the phone rings. I miss it and then I get a text from an unknown number and it simply says 'Are you going to my Dad's house today?' Yeah like that is supposed to explain who it is but luckily I know this kid all too well and realised it was him.

I told him not until 4pm.

A little while later I get another phone-call fro the boyfriend of my friend's daughter who are going there on the days I am not. O yeah, I forgot about that. When I was saying 'no' to looking after his animals he told me he had made it easier for me as he has his daughter and her boyfriend going there one day so that I only have to go there every other day. I was a bit annoyed with this and said “How is that supposed to help me? I am still coming here every other day which was what I was doing when you went away last time that I could not handle it!” Of course just like of old when he wanted things his way I never got an answer. S the boyfriend called me and said “Have you heard from [the son] about getting in the house?” I ten told him that I had before he went on to say that he had asked his sister for the keys and when she told him no he got frustrated with her and upset her.

The girl has her own problems and upsetting her is not a good idea.

So two of us have been put into a situation that is not good for the heath of either of us, lol.

I told this guy that we were going to get a lot of this.

I got to the house at 4.15pm after speaking to a mutual friend about it. I had been asked why I had agreed to this by several people and how wrong it was to put me in this position. How was I expected to refuse him entry or get him out when I let him in?

Oh. I am guessing that you have worked out that for years the son was not allowed a key to the house while my friend was on holiday? For the obvious reasons.

So the boy knows, is told each time his Dad goes away why he is not allowed a key, told he is not getting in the house and told to not drive people nuts about getting in the house. But always does drive people nuts.

I told this chap on the phone that I remember him on the phone to me the very same day that our friend went away on holiday four years ago the very last time I did this.

We are still on Saturday here, lol. The first day, lol.

Anyway when I finally got to the house around 4.15pm there was no son waiting outside. Well, I thought, it could not have been that important. Around 4.45pm the house phone rang three times which was unusual. I thought 'I bet it is him?' Then my mobile started ringing, yup it was him. It is now 5pm I told him I would be there at 4pm, he is half a dozen miles away with no car and now wants to come to the house. The house he does not live in any longer. I said … 'fine, I will be here' and ended up watching a documentary on volcanos. Some forty minutes later he then phones me, says he has stuff happening there and cannot come. Perhaps a girlfriend who is asking him why he is about to pay for a taxi to get home to do some rapping to two sings then come home again?

You think I am joking? I did say he has always thought he was going to be a big rap star, lol.

He once had an argument over not finding a job because he as going to be a big rap star and would not have believed this myself had I not been there to actually ear it myself!

Eventually I leave the house on my beaten up bike I got out and changed the inner-tube on so that I could lock it up at Sainsburys on the way home without worrying about it being nicked. Only … as I was cycling away from the house I thought … 'why does the front of my bike feel spongey?' and looked down to see I had a tyre with very little air in it and I had the wrong air pump to the wrong bike.

Straight home and no Sainsburys and no milk and other bits I needed.

Now it is Tuesday and I still have not go milk and last night I came home too buggered and I also realised I had hardly eaten anything. If you can count two cans of Monster,, oooh yeah I am feeling thirsty all the time, and four Twirls. Oh and a packet of McCoy's Salt & Vinegar Crisps. That was is all day. No food in the house and has not been for a week.

That was yesterday … Monday and only my second visit to the house to look after the pets.

How long is he away for? Only 5.5 Weeks. Yes that is five point five weeks!

So today I ave this feeling of illness mixed with anxiety, as I started of saying.

Only my life could be like this.

But then I never thought I would be here this year.

And yes that appointment in a couple of weeks because of the blackouts, seizure I had, hearing dropping off by around 30% (ears popping) and a couple of others that point towards a brain tumour? I said to someone it would be just soo typical of me that I will have all this shit to deal with after just being told something potentially traumatic.

Lol.

He does not return until three weeks after my appointment, though I am not likely to be told at the time I do not think. Unless they feel on the day after inspecting me and talking to me that I need a scan tat very same day?

I have not even told my mother yet who has just found out a friend of hers of many years as terminal cancer. A mother to some childhood friends of mine.

But hey, according to the DWP everyone is sitting around with nothing going on and can be fucked about unfairly and having their money cancelled unfairly.

Oh and I have meetings with Citizen's Advice an appointment for a colonoscopy I am still waiting for and of course a visit to the local council and a bloody form to fill in .. and documents to hand over and anything else that crops up over the next five weeks.

Plus my normal fatigue getting far worse and let us pray I do not lose the use of my legs again!

It is annoying at times because you feel as if either people do not believe your Fibromyalgia, do not realise what having Fibromyalgia is like or simply just do not care and are selfish? I just do not know.

The ill and the dread is all I seem destined to have.

THE WORLD OF CHRONIC

I was up early once again.

I was sitting here is a kind of panic mode as from today I am responsible for a load of animals tha I kept telling someone I did not want to be.

So what happens on the very first morning I wake up to this unwanted responsibility? My back is in considerable pain for the first time in weeks and I still have the shooting pain in my right foot I first felt yesterday and one reason why I did not leave the house.

So I was sitting here thinking about that and how it is the the DWP can be so cold and evil towards other human beings, David Icke – cough, and I thought I would look up a few things with my condition.

I came across an interesting line that made me wonder ...

A diagnosis of chronic pain is associated with increased mortality due to a variety of external causes. - Mark Borigini M.D. https://www.psychologytoday.com/blog/overcoming-pain/201101/fibromyalgia-and-death

Might explain a few things that I keep thinking will take place, intentionally or otherwise.

Then I stumbled across several sites that had lists of celebrities that also suffered with my condition and some of them, Janeane Garofalo the actress in particular, were shocking. Oh and the first time I saw Janeane Garofalo I simply melted. Not often I do that and was a few years back now. Not seen her in years.

Do not know her? How about Nicole Chilelli (not sure who she is but cute), Brittany Murphy (actress), Rosie Hamlin (singer), Sinead O'Connor, Jo Guest (mentioned previously), Cher, Paula Abdul, Michael Crawford, Morgan Freeman (he says from car accident too) and Florence Nightingale?

A couple of other little known names are Tobey Maguire (Spiderman has FMS?!), George Clooney (CFS), Jerry Lewis, Stevie Nicks (Fleetwood Mac) and John F. Kennedy. Wait, what? But up until just a few years ago Doctors kept stating it did not exist?! LMAO!

There is a whole list of American celebrities that Brits coming here would probably not have heard of so I will include a few websites for those interested in looking ..

http://jensfibrostory.blogspot.co.uk/2013/04/celebrities-with-fibromyalgia.html

https://www.pinterest.com/shirmason/famous-people-with-fibro/

My word. Many of those were shocks and I was not expecting to see quite so many. I thought it would be a very short list of four or five people but I am sure if I carried on looking I would have found many more?

So then … five weeks of living in the darker pits of hell than I normally do starting from today and with me panicking that nothing will go wrong! Marrrrrvellous!

I am going to have to get used to using my bike a lot more than I have as being on foot for the amount I will be busy? Wont happen for very long, a few days and I will be a wreck. I hope it does not go on and cause any anxiety as I will not be a happy man .. literally.

I might even be forced to drag my secondary bike out, one I can use to do shopping with as I feel OK about locking it up. It may well be the only way I get through this, especially if I find days with more than one place I need to be it will be a must.

It is funny how the world can be going crazy around you but you have to keep on doing mundane crap? While at the same time having nothing to do for even a day drives you almost insane?

For some reason and for several months I have been losing my drive too, which does not help when you having difficulties thinking of something to get out and do for fear of staying in and going insane.

I very seriously need to lessen the number of days I do mundane things and I need to get out and do the things I find interesting and relaxing. I also think I need to find other things to do that I find interesting. Like attend some weekly event with like minded people in any one of the half a dozen or so things I am knowledgeable in?

Funny how no matter how I look at it I need a damned car! Always at the back of my mind for several years all I have thought it how much easier things would have been and how much quicker I would have reached my goals had I still had a car? But it is just too much of a major headache to run a car on a minimal income, if of course you could even call it an income?

There is no way on Earth I would ever …. EVER come back and live my life over again. No bloody way!

Lol.

THE LAST GREATEST MEDICAL COVER UP

Would you be surprised to learn that the title is not mine?

I am having another rare good morning with little in the way of trouble .. knock on wood.

I had just checked my emails and have written out a report of a recent sequence of actions I have taken that I intend to publish at the weekend.

Parts of the report show a number of days and I want the days to build up before I publish the report you see. After all everything I do is a test as much as it is genuine. The genuine stress test site only in this instance the word 'stress' has a double meaning.

I am still awaiting some important replies from several organisations that simply have not arrived.

I had also discovered and probably forgot to mention that in my recent surge for research data that one website for Fibromyalgia, FMA UK, was stating something about a documentary being done about how the DWP treat people, obviously badly, with Fibromyalgia Syndrome. Turned out they were filming in the first two weeks of April or something so I had missed it .. typical.

But then I thought i had better keep an eye out for this documentary appearing on TV. Only this morning I started wondering if I had looked at the year this was supposed to be and might have been old and I missed it. So I actually started looking for it.

In my search that was in vain I came across two separate interesting things and the first was a film that premiered at the London Independent Film Festival Opening Night Gala and the poster for said film did not mention him by name but had someone that looked a lot like the late Alan Rickman.

It is about a Cellist who develops Fibromyalgia that basically destroys her life and it is called Sonata for Cello.

http://www.fmauk.org/latest-news-mainmenu-2/articles-1/1071-premiere-of-a-film-about-fibromyalgia-london-14th-april-at-6-pm-bookings-now-open

Carrying on with my research I then spotted that line in the title on a page of a Fibromyalgia sufferer called Donna and her site fedupwithfatigue.com and a sufferer of Fibromyalgia and Chronic Fatigue Syndromes, though I believe the two are the same thing. Fibromyalgia just appears to be the same thing as Chronic Fatigue except with more symptoms and I think that is how these two arose separately.

Anyway .. down her page you will see a section called 'Watching & Listening' and then see the title I have here as a link. Now it gets a bit odd. The page is listed as news for January 2016 so not that old and the link is listed as a newish UK documentary. Only when you click on the link there is no video and YouTube states the account was closed down?!

http://fedupwithfatigue.com/jan-11-2016-fibromyalgia-news/

& ..

https://www.youtube.com/watch?v=z7CE3K6MmfA

I found another website that stated that Fibromyalgia was bought up with Members of Parliament recently in the House of Commons, I tin tat is where it was. But I have navigated away from the damn page and cannot remember where it was or what it said!

Very suspect, lol.

HOW DOES ANXIETY KNOW?

I was playing a game just now, a title called The Witcher 3.

I was killing some time as I am waiting for an evening delivery from Amazon. I am half way through the window they said it would be delivered. Fingers crossed.

I was out re-acquiring a GP letter earlier and I had to pick up two things, ended up three things, for the sorely needed replacement to my very faulty and very old smartphone, though I think of them as dumb phones, lol.

I was thinking throughout the day how weird anxiety is and it got me to wondering whether the odd things I experience are the same for everyone that experiences anxiety attacks?

What is so bloody weird about anxiety is how you can wake early in the morning and before your even fully conscious your getting these feelings of anxiety. How in the world does that work?

I mean to say how in the world does your brain even know how to feel anxious when your not even consciously remembering what it is you have been anxious about? You just wake up and it's like someone hitting you with club before you have even adjusted to the light! BAM! Just like that.

I have not had this in years and in all honesty I never thought I would ever get these attacks of anxiety ever again.

You see I had a number of things I achieved and a number of things that were going to happen but for some strange reason they have all failed.

For starters I managed to get back my disability money, though not the seven years they owed me and not the same rate as before either. On doing that I knew that despite my incurable and degenerative condition they would still review me in time. But this has always been three years. So I never expected any aggravation or the bullying of the DWP for another two years yet.

Now with that I had other things going on and other things I have been steadily growing that eventually would provide me with an income to get rid of those awful people that work for the Department of Work and Pensions and for good too! But this has taken a long time and though I am well over half way there I need more time to build it up as the ranges I can get to are minimal and with a mountain bike. Had I  car these last four years I have been at this I would have been off the DWP long ago now.

Also there was the little matter of some court paperwork that was meant to come my way but did not and someone close to me just vanished into thin air.

I do not have the abilities I once have and cannot go off travelling and working out where they went and why the went into hiding. Well ... not without a car and money, lol. Same old, same old.

The funny thing is it was these anxiety attacks I got years ago that got me thinking about helping others and I even stated to a friend that ... I wonder if the Citizen's Advice might request my help at their branch? Once they realise and see everything I have done.

Damn it, just remembered a DWP letter I was meant to post on here ... umm I think I forgot to post it up ... or I did and forgot that I did.

Memory problems ... unless you have experienced them or have been unfortunate enough to have someone close to you experience them you have no idea what they are like.

Everyone I know has been told time and time again about memory problems but people think that because theirs works fine then yours does too. Very, very rarely is anything said or done and the memory loss ever taken into account.

For me and what I am capable of having the anxiety attacks in the first place was such a shock and what I got them over, what caused them, was such a shock too. Sometimes it is stupid things ... or to me normally stupid things at any rate. Like now ... I have had things taken away from me before by not just the DWP but fraudulent bailiffs too, committing crimes one hundred times greater than the ones that come to your home for! I wont be the only one that has noticed these unequal actions ... not by a long shot.

But once I had gotten over the anxiety attacks I felt extremely sorry for others that got them and even I with all my experiences wondered if there were people that were out there that experienced things far worse than I had?!

Though in all honesty many have committed suicide over many things that have happened to me and it is this and this alone that makes my set of horrid experiences kind of unique. But I am not naive enough to believe there cannot be others.

So with those thoughts I wondered whether I could hammer away on the pages of a blog and that this would become like a beacon or a lighthouse to others that had been through what I had? That I could tell them that I know what it is like and that I am trying to do something about it and give them some hope?

I hope.

I find that getting out and trying to do things helps but I have had it so bad you do not want to move from the sofa ... normally tucked away under a blanket like Linus from Peanuts. Yeah it can get that bad if the right buttons are pushed.

Of course some years later and after numerous cries for help and drugs to Doctors and Psychiatrists and go and find out that the anxiety attacks are linked to almost everything else I was experiencing for over a decade ... Fibromyalgia Syndrome. I hate the word 'syndrome' because it means 'not fully understood' and I want to understand it. I have always wanted to understand it because I was desperate to control it and limit its effects. When I finally understood it enough to know what it was I needed I then found out that what I needed was in fact illegal ... in the UK. Not allowed by Europe which is bad enough on its own but Europe has absolutely no answer nor alternative to this drug of Sodium oxybate.

It did occur to me that leaving Europe that suddenly the best two drugs might become available? But this will not happen for two years until we are fully out, I imagine?

ONE LONG ROAD OF PAIN

Ooh boy! Has today been a bad one and it is only 1.30pm!

First off I am stuck between a rock and a hard place, quite literally and to say it is not stressful ... well I would be lying.

It also turns out that not only have the naysayers now decreed that the positive parts including money is all bullshit, that they have taken it upon themselves to decide that all the previous stuff, much I was present at and recorded dozens of things, is all bullshit too.

Damaged egos, eh?! LMAO!

Added to that is I have a GP appointment where I am going to try once again to be referred to an Osteopath over my back pain.

Oh and the nausea.

Oh and I must remember to mention waking up to discover my left hand is digging into a tender area around the base of my neck, which was already spotted twice and then retracted by the NHS. This may be linked to the nausea, you see?

Which may be linked to the back pain that was also spotted twice and then retracted.

Being wrongly diagnosed, especially when you yourself know what it is, is one thing. But being diagnosed and then having things retracted?

Happened with not only my back, twice, but also my right knee twice and an inguinal hernia on my right side. Recordings of the Doctor in question being caught red-handed by me and admitting falsifying test results and then retracting that too! Lol.

If I ever told them in anger I was recording them I would never  have acquired as much as I have. Let them lie, let them think they are getting away with it. Move onto the next thing, let them build up a great deal of over-confidence in lying ...

...carry on recording. Mount it all up ... post it all on the Internet when you have far more than enough.

Watch as journalists, newspapers and TV idiots act no different to those they expose and steal your stuff, alter it, go after their own but similar story and you get nothing in the way of thanks for it.

Well I did say the whole blog was a trap?! Remember? LOL!

I have now confirmed that high blood pressure is linked to Fibromyalgia and in so doing discovered a new drug, Milnacipran (brand name Savella) that is reported to have better affects with Fibromyalgia sufferers than the totally cheap crap and wrong drugs they fob you off with, like Gabapentin and Amitriptyline.

It seems that this new Milnacipran works on specific neurotransmitters in the brain that are affected by Fibromyalgia Syndrome which itself is partly driven, or mostly, by not having the sleep where your body repairs itself, including the brain itself.

Yeaahh ... imagine that next time your thinking about your friend or family member having something you do not believe or think does no exist, because of idiot medical ... umm experts? I think not.

I know because I went through it for 13 years, though it turned out I had had FMS for closer to 20 years!

I am not going to get into the number of things the NHS destroyed by being both idiots, deaf and liars because I have mostly done that already. Spent 3.5 years almost doing that on this blog ...

... saving money? I think not!

It also mentions the other drug which is the only one that work on the cause of Fibromyalgia, lack of restorative sleep, Sodium oxybate (brand name Xyrem).

Please note that on the page in the link below that Gabapentin is Neurontin, the latter being the brand name which they seem to fail to mention.

Sodium oxybate (Xyrem) is the drug that Dr Kirkham, specialist ion Fibromyalgia at Guy's Hospital, had, to my complete shock, never heard of. I told him it was a shock to hear that as it is the one and only drug that deals with the core problem for people with Fibromyalgia.

In other words it is not only dealing with the pain, not masking it, but deals with he fatigue too. I think this goes double for Chronic Fatigue  Syndrome which I believe is just Fibromyalgia Syndrome in its early stages,

If you have come here about the drugs I mention of Fibromyalgia or Chronic Fatigue, or other subjects for that matter ... you can search the archive! Lol.

So I am thinking about all that ... plus the two other things both concerning large amounts of money, one I do not want to be involved in and one I thought I was and now I am not ... how long for and why not I am in the dark about.

Of course as I stated previously my life has been made a living hell by the naysayers made up with those with damaged egos and those jealous with envy who do not want it to be true.

For the first time in several days I pop in to get something from a friends store and am on in serious back pain. I then decide to head to town for a brief pick up and head home. I bizarrely consider catching an unusual bus route home but miss a bus.

I am then walking down a long straight road I use and I get a third of the distance along it when ... WHAM! No George Michael has not crashed into another Prontoprint, or whatever it was, I get a sudden attack of one of my many other pains straight into my right foot!

I cannot walk! No buses down this road either! I stop for several minutes, lean onto my walking stick and wonder how a human is supposed to deal with this amount of pain, stress and thoughtlessness of others before trying to carry on. Two steps - bang, bang! Darn it this is seeming impossible.

Now here is the bit that no one considers nor asks about ... what do I at times like this? Well I have my walking stick and I stand there and think that there must be a walk that will keep the pain from firing off.

I walk with the heel on the right foot and try not to put the ball of my foot onto the pavement, it does not always work.

I limp and lean hard and my arms get tired and I switch arms and I feel light drops of rain on my face and think "please, no! Not fucking now!! You have made things hard enough at a tough time already, do not fucking rain now, its all you have done for week on end!!"

I look at the pavement stretching off into the distance. It suddenly looks a very long way away.

I have to make three major stops of several minutes, more leaning and questioning, along with a half a dozen stops of a few second here and there.

Despite actually thinking this was going to be the first time I was going to fail to get home., because of my location far from a bus stop, I struggled, bit my lip hard, got down deep and I worked through the pain and limped all the way home.

Oh how I wish that we could get just a week or two of some clear skies and wind free! You have no idea how much I so want some of those so that I can get out on my damned bike!

Because the other things I have to deal with, harder when your avoiding people, is the ever so annoying boredom!

The link to the drug I researched that holds the link to high blood pressure and Fibromyalgia along with the listed drugs above ... yes including the ones I get refused, like Pregabalin (brand name Lyrica) and the mentioned Sodium oxybate (brand name Xyrem), click the link ...

http://www.ukfibromyalgia.com/treatments/medication.html

DIFFICULT DAYS

I had another rough day.

Not helped by the last few days plus I had to go out in dreadful weather because of things I have consistently forgotten during the last week.

I still came home without things and had to visit my local store after a rest.

I was text by someone early in the day, someone I didn't really want to speak to buy them I didn't want to speak to anyone.

Someone who went on the explain to someone what I'm like when I'm like this which is bizarre because no one has been around me when I'm like this. It was also a bit worse than normal and thirdly they wanted to use it to prove to others that it's my fault when we disagree.

Funny because one of the things I complained about was that no one listened to me when it was my stuff and instead thought they knew better.

The funny part? Well that would be that these bad days were down to my condition and I was having a flare up but never seem to recognise these and no one had read anything abut my condition in the 18 months since I realised what it was.

So no one can actually claim to be in any position to make decisions or cast their opinions about what is ... err, up with me.

What I did recall while the day played through in some agony and frustration was that I was indeed having a flare up. The lumpy feeling under my arms and right feeling breastbone I had failed to pick up on for several days.

There was more realisation and I have already posted about this... err I think? I picked up my prescription because I thought I was heading out of town. Except one pill, Tramadol, was missing. I had to drop a note into my GP surgery yet again because something was missing and yet the Quinine sulphate was in the bag.

I had ran out of Tramadol, oddly enough, and I had a few days of really bad back pain added to the normal foot pain and fatigue. I had also had aching and stinging in my groin, the part the NHS lied about in an ultrasound test. Probably due to lack of Tramadol.

Then I overdid it while being confused as to how because I did not do much not venture far but knew by the time I got home. I then pushed myself to do the different jobs before laying down. This was a bigger draw them acquiring tobacco I had also ran out of or milk.

I had also forgotten to take my vitamin pill for magnesium I had to take as well as running out of quinine.

As I had now has several days of the roughest I had endured for awhile while missing a few pills was too much of a coincidence and it has hit home that they do in fact have an affect.

Plus I am pretty sure that yesterday morning I forgot to take all my pills and may have done this Friday morning too?

Yoinks!

I simply must remember to take them tonight and once again in the morning!

This is where the memory lapses in Fibrofog can work against you and Fibromyalgia compounded by living on your own. Well when you have it and live on your own that is? Lol!

I had also read somewhere on the Internet that in some study they had found that Fibromyalgia sufferers lost grey matter. Umm yup, that grey matter!

I found this confusing as I am sure in my own case that if anything the opposite was true? I have out down the scrambling of signals to an increase in brain activity that has allowed me to hold onto so much information about so many different subjects and take on everyone that I have on this blog.

Maybe if the years were correct that just like the amplifying and reduction in brain signals that it can work both ways with grey matter too?

Something they could have found out from me had they bothered to study me at any point and ask the right questions. Something I have thought for many years even before I discovered what it was that ails me.

Boy I hope I sleep tonight and feel back to normal tomorrow?

I will take time out to go on a bus ride somewhere, not sure where must yet. Somewhere, perhaps with my camera? Oh, weather permitting of course. I will wager that the weather will put paid to that plan?

Lol!

WARM IS THE FIRST DAY OF BUTTERFLIES

Not so long ago I was surrounded by many people echoing thoughts and lines that appeared to come straight from this blog. Just how eerily close to my own..struggles of many a year gone by.

I have pondered as to how interesting it will become over time and the patterns that will reveal themselves form the many people who collect already and in the coming months the many more who may appear?

My condition of Fibromyalgia is a nasty one and even has its own levels of 'nasty' too. Someone uttered that it was thought that the toxins that exist in all plants, to prevent them being eaten, might be what causes our flare ups to take place? Interesting.

We know, or at least I do, that the condition for Fibromyalgia to emerge exists in many but that it takes a violent jolt that causes what I believe to be a kink in the central nervous system at or around the base of the neck. From then on in it is all down hill. Any more violent jolts like those that involve whiplash and the speed of your downward spiral will increase in speed.

My own symptoms first started within months of me having a bad accident when I was around 15 with hips and ankles and the odd back pain. Then I had a car accident around 21 or 22 that involved me head butting a windscreen. Then I had another accident some years after that at around 25 that invovled whiplash. Plus a couple of other jolts in cars with others driving that ended up in a stiff neck, the list is long.

As a result of this long list so is the list that contains my symptoms. Somewhere between a 110 to 120 when I worked through it all. I was not expecting that and would have been shocked at a couple of dozen.

I also have a pain in an area of inguinal hernia repair, hiatus hernia, oesophagitis and a buggered right knee. Spotted twice three or four years apart and diagnosed on the second spot. From both hospitals a letter stating I had a knee problem never materialised at my GP surgery at the time. Though one knew I had a buggered knee, the first one, and later quit by announcing early retirement stating she had 'had enough of the NHS'.

The ring of people that were present within the group got to hear how the long the NHS took to diagnose it and that this was first diagnosed by myself before I basically had to bribe my GP surgery to send me to Guys Hospital for confirmation after being told there was no one in the UK.

That one kicked me off for recording him and his father claiming I broke the law, which I did not and also was not a good enough reason according to the NHS' own guidelines. Oops.

I had already been kicked off the previous one for realising and stating that an ultrasound scan had been falsified and that I had recorded the specialist admitting that they had, dictating a new letter to my GP and then NEVER sending that letter. Well...he did not know I was recording him, otherwise he would have done.

However, if I ever was angy, as they stated as a reason for being kicked off their surgery, would I have not then thrown in their faces the fact that I had recorded them? But I did not.

At any time I revealed I was recording them That would have been it and I would not have got anything else out of them. Too early and I would still be ignored. There wasn't a 'too late'.

I did not want one or two things. I wanted a lot. A hell of a lot. Years of recordings of me trying to get them to diagnose and help me and them squirming and trying not to.

Sure I knew I would realise things and discover more things when I started. I never, however, ever thought I would find the things out I did and not just within the NHS but within a whole list of public services.

I had a text today to say a butterfly had been spotted. For me that is a red rag to a bull and I am just itching for some green on the bushes and trees and I want to go screaming around the place on my new bike.

Provided the weather leans in my favour I want to enjoy this years Spring, Summer and Autumn as my endeavours all speed ever faster to their intended goals.

Clear blue skies and a golden glow from the Spring sunshine enveloping my entire body is all that I crave presently. Cool breeze in my hair and the soft crunching sounds of my tyres in paces far from any roads and devoid of people. Solace is that I seek while wandering and riding the wilderness like some lone wandering warrior left to his own thoughts and devices.

The sight of Male Speckled Wood Butterflies performing their aerial combats not alerted nor caring of my presence as I gaze at their skills as they rise ever higher skyward. Laying down and relaxing while feeling the soft blades of grass bathed in sunshine long missed. Wonder how many summers I get by without being spotted by those with eyes like Eagles or whether the Bearded Reedlings finally succumb to my hunting and I get the video and photos I so long to get? The elegant Egrets and their fanciful white head feathers appearing from tall reeds and sometimes disappearing again. The colours of the banks of ponds that are flush with Marsh Orchids are longed to be seen once again along with the almost unnoticeable Bee Orchids. Not forgetting the Common Spotted Orchids and Twayblades of course.

I wonder if all my excursions have revealed everything to me or whether or not surprises lay in store?

In other areas more tools to help me with my blogs will be appearing and shown within my posts and a new...energy will emerge that will possibly thrust some blogs forwards. Time will inevitable tell.

So many opportunities will be presenting themselves this year in so many ways and from so many sources that my head is likely to spin. I believe this to be a key year and more so than that which it has already become by way of one public service caving in under pressure and giving me a fraction of the money I have lost over recent years. This is, after all, how I got my new tools and the more tools to come.

Right now its the warm spring sunshine I crave the most along with the sight of Orange Tip Butterflies and maybe the odd Brimstone Butterfly.

Roll on spring 2015.

;)

FIBROMYALGIA & THEM

What a strange day?

I attended a support group meeting for people with my condition. Oddly it was at 9.30pm but my inability to asleep until the early hours, making that time impossible for me previously, is gone.

Probably temporary due to feeling stoned on the afternoons which is down to prescription drugs. Amlodopine being the culprit. The stoned feeling gives way to a strong desire to sleep. Very unusual for me as my late nights continued for years. Maybe having real trouble sleeping with Fibro is a rarity?

It was called, or the logos said... Fobromyalgia & Me. Well you have heard a lot about mine so I titled this one as I did. No names nor details will ever be mentioned ever. Unless of course someone wants to. Even then if I think this is a bad idea for one reason or another I would advise them not to do it.

The group was nice. The people running the show seem to be really nice. I was asked if I was recording... twice and once by email.

There is no desire for me to record and publish patients. So no nothing is going to appear here! Lol.

I have made it clear on here from the get go that I'm not even really interested in the pawns, or front line staff that fob you of with lies and excuses. No, I am after the ones right at the top who did this as well as those that allowed them to do it.

I was recognised by one lady and I explained that I spent a lot of time in a pet shop 100 yards away. She then remembered me from there and O explosives that the pet shop only moved to Baker Street half a mile away. Ten minutes or so into the meeting and a lady walked in I knew. She was the daughter of a lady I know I helped with for a time with her terrapins. We chatted and she was somewhat surprised I was there. I was completely blown away she was there! Lol.

There were about twenty or so people in the group and someone who works with healing stated she was relieved to see two men attend.

Depending on who the author is Fibromyalgia between men and women is 10 to 30 percent for men. Or in other words 1 in 7 or 10.

A healer did a group meditation type thing with some pretty neat background music.

Despite my long horror story, when I was asked to explain to the group my own experiences I kept it brief.

Later they found out a bit more plus I explained about that book that proved to be a godsend for me. Figuring out Fibromyalgia by Ginevra Liptan. When I explained that she had it while studying medicine to become a Doctor but kept it hidden from other medical students. The whole time studying too, everyone was interested in the book. Pens and notebooks appeared at points around the room and I was asked to spell her name by a few.

A lady from Acupuncture clinic in Winchmore Hill also explained what her profession was like and how it helped some patients with our condition.

The session was over three hours and late on in it I was asked what I had thought of the session. Being new and all. I stated it was a real relief to hear so many singular horror stories from others with the condition but that this statement sound wrong. Everyone said that they understood.

I heard some surprising things too and some confusing things. Done drugs were being used that are not only boot on my radar they are drugs I was very familiar with, like Citalopram.

If I was forced to bet it would be that this drug has zero affect on Fibromyalgia.

An interesting situation arose when the word ' damp' was used as something we don't do well with. What was interesting was that everyone takes about the summer and how much better they feel. This time of year I yearn so much for the sunnier and warmer weather. I think this is a misconception.

I myself love the Spring most of all followed by Autumn. Spring because I will feel better and can do things again. I like the Autumn because immediately before it will normally by hot, stuffy and humid. I hate this, I really do.

But as I stated to one woman there if O were to ask each of them about being hot and humid they would say they hate it. Loathe it even. I do.

There was some confusion over caffeine too so when I was asked what I thought O explained about caffeine and what happened with me and the Restless Legs Syndrome and Restless Arms Syndrome. I also explained that Ginevra Liptan was the only author I had come across who mentioned Restless Arms Syndrome and many other symptoms I have along with the Plantar fasciitis symptoms.

One lady asked for the blog address but I did not attend with a set of cards or leaflets with the details. I mentioned this blog but I would rather people become curious in their own time and ask.

One lady asked and I scribbled it onto a page on my Moleskine notebook, tore it out and handed it to her.

The blog and it's various... events will be a lot to take in... once you realise just how many things there are within these pages.

Everything is here to back to what I say and more is coming. No one will find anything fabricated on here. Not even grossly exaggerated! Lol.

I was never going to lay down and be beaten the way I had been. So some years back I decided I had to plan to record every appointment and meeting and mount up the evidence.

Now wanting boy one or two but dozens of things and dealing with the public services this was always going to take a bloody long time... and then some.

The last set of so called support groups I visited were nothing like this. In fact they were not support groups, no one was asked to talk or tell each other what we had wrong with us. Each month several people would tell you a bunch of crap most average people already knew and then the latter half of the meeting they would try to recruit you to work for Chase Farm Hospital for free?!

I attended three of these. I only ever saw one other person again and most never came back. It was a pile of crap in all honesty. They got different volunteers to tell you how cool it was to work for a bunch of overpaid people who have forgotten their oaths for nothing more than a two quid food voucher a day that works barely get you a mouldy cheese sandwich from the MRSA ridden canteen?! Lol. What's worse the cleaners all have Ebola! Lmao!

Anyhoo is once a month, which is kinda cool, and the next major meeting will have a dietician. Now there is something I intended to ask me last GP about before being kicked off and keep forgetting to mention it to my latest one.

Maybe in time I can help some of these people? I mentioned skin trouble to the last sitting next to me and she went to say she used something and as she started with the letter 'T' we both said in unison "Tea Tree Oil!" and she said how weird that was.

People not thinking or believing there was anything wrong with them, strained relationships, the temperature, getting about on buses, moving about and even having to bend over or crouch. All and more I mention here were uttered by individuals within the group.

All were sad and frustrated that our condition is frowned upon and even that some insist does not exist. I told them I very much plan on changing boot only that but a bunch of other stuff too.

People gently nodded as if it sounded good but far fetched. I mean I am just one guy...how could I do anything?

It just so happens that someone in the group has a mother who just might have some insight into that particular answer?

Lol.

This blog has many. They may take you some time finding them all?

Still what took me fifteen years can now take others a few weeks... or a few months?

Trust me on this... no matter what you think... don't let it takes you the same amount of time it did me. It will be...harrowing. And then some!

I visited the pet shop for a bit but then went home and grabbed me bike. I cycled over the grounds of Forty Hall in just a thin top.

The sun being out was too much of a draw and I long to be out all day among the green fields and forests.

A warm Spring sun and the aroma of flowers in the air combined with the leaves just appearing and flushing the trees with various shades of Jade.

Gently rustling leaves on a cool breeze with ChiffChaffs and Chaffinches singing their melodies to anyone that would hear.

Dusty paths and bird hides are among those that last upon my chosen summer haunts and with camera on back I search far and wide for the more unusual things to spot and photograph. Bearded Reedlings are a long wanted sight missed briefly tell years ago but replaced by Water Rail and Reed Buntings.

The pinprick holes that adorn the night sky will be my focus this year. Gazing among the starts at sights dreamed of since a young boy will finally be achieved. But sights alone were not enough to get my starry night blog moving. No pictures and videos were also something to be acquired and posted about.

Thirteen blogs exist I keep. Attempts to maintain have made me weep. Tools missing for many a year. Acquiring now I give great cheer.

Toodles!

THE FINAL CURTAIN PART ONE

"I don't want to alarm"

That is a line I will remember for the rest of my days.

This post is going to be an unusual one. Normally if I include a link they are at the bottom of my posts. On this one I will put up a link shortly to a page and everything afterwards would be quots taken from this page.

I first want to explain in part how I found this page. I very recently came up with an idea on a search by linking to things together I not only never thought could possibly be linked but which I have never come across before, but will state the was plenty of opportunities. To find out.

Quite unfortunately I found it.

This may turn out to be a nightmare scenario in just a few days that would seriously put to an end almost all my plans. All of them, bar one. 

If fact the very creation of this blog was in part a kind of... insurance of a kind. In the event that I was prevented by an outside force from continuing my work this very blog would, way ahead of schedule, finish the job in a way that would reverberate for a very long time to come.

Now I had hoped that the emerging of an... opposing force would feel to materialise and believe me when I say that this one was not foreseen.

Unforeseen or not I had to plan for every eventuality while first gathering, acquiring, planning, tricking and manipulating everything and everyone I needed to do to get to where I am right at this very moment.

Now if it turns out that indeed what is.... suspected by some turns out to be the case I have no doubt whatsoever that the timing of this... emergence will be talked about by more and more people for the foreseeable years. This is because the timing will seem... very hard to believe for many. I have no doubt that if I do turn out to be rather unlucky that this... timing and the incidents will spark of God knows how many conspiracy theories for a very, VERY long time to come. It will also get crazy because...

I simply cannot say that any of these conspiracy theories will be wrong because I do not know what they are. I also do not know the truth to this that have gone on in recent times either.

There are some odd recent events that have dumbfounded me and I could not explain. I have mentioned this things on here too.

In any event that something very odd occurs I cannot explain away then this is what it is... 

unexplainable. In situations like this any theory,  no matter how bizarre sounding, cannot be ruled out. A theory is exactitude what it says on the tin, until the day it is disproved. A conspiracy theory means that a group of people, big or small, believe that other groups have conspired to work against another group. Invariably is used to say that one group belonging to government/rich/powerful people or any combination thereof have worked against less fortunate groups or poorer groups. Sometimes these can be shady,  cloak and dagger this groups who don't exist on paper. Other times this could be cuts the use, I won't say 'clever use', of organisations meant to be servants to the people.

I always knew that eventually my actions would lead to the eye opening discoveries of that which I have told everyone about that visits this blog. I just did not know how this would occur. Indeed I stated from day one, or at least early on, that both my plans, actions and endeavours asking with this blog were... many faceted.

Well a number of these facts were bit visible to me while others were merely unlikely.

This week will prove this theory one way or the other. There is a question and the answer is yet to come. I can't tell you the question because it would not be right and I'm sure declaring the question before it is asked in the correct... scenario could also backfire on me. In light of recent events I would rather not allow the possibility of backfires. No siree!

But the question can be told when the answer has been given and not before. But that is a lot sooner than you might currently be thinking? Or indeed I imagine that the largest percentage of those that read this might glance up at the date this was posted and realise it's possible the answer may already have been given. You would probably be quite correct too as I am sure that 24 to 48 hours would suffice.

So without any further ado, here is one link I promised to do with Fibromyalgia and then a series of... quite deliberated pasted fur the rest of the post...

http://www.ei-resource.org/articles/fibromyalgia-articles/causes-and-treatment-of-fibromyalgia/

Research suggests fibromyalgia may be the result of:

Trauma, especially whiplash injuries.Hypothalamus-pituitary-adrenal axis (HPA) dysfunction.Emotional/physical/mental stress.Low thyroid function.Low serotonin states.Adrenal dysfunction.Chronic viral, mycoplasma, and or bacterial infections.Endocrine disorders.Sleep disorders.

The truth is we really don’t know for sure what causes fibromyalgia.

The decrease in DHEA levels correlates with the general decline of cell-mediated immunity and increased incidence of cancer. DHEA protects the thymus gland, a major player in immune function. My fibromyalgia patient's usually take a special adrenal cortex glandular supplement.

What We Do Know

Fibromyalgia is now thought to arise from a miscommunication between the nerve impulses of the central nervous system. The neurons, which supply the brain, become more excitable, exaggerating the pain sensation. This over-amplification of pain is referred to as "central sensitization." 

Fibromyalgia patients have a reduction in their pain threshold (allodynia), an increased response to painful stimuli (hyperalgesia) and an increase in the duration of pain after nociceptor stimulation (persistent pain). Individuals with fibromyalgia syndrome have low levels of serotonin, a 4-fold increase in nerve growth factor, and elevated levels of substance P. Nerve growth factor (NGF) is a member of a family of peptides known as the neurotrophins. The exposure of nociceptive sensory neurons to NGF leads to up-regulation of substance P in sensory neurons. Substance P, the neuropeptide in spinal fluid, is a neurotransmitter that is released when axons are stimulated. 

Increased levels of substance P increase the sensitivity of nerves to pain or heighten awareness of pain. Although it’s not fully understood, fibromyalgia patients have an imbalance of the hypothalamus-pituitary-adrenal (HPA) axis. This imbalance creates hormonal inconsistencies, which disrupt the body’s ability to maintain homeostasis.

Many of the most common fibromyalgia symptoms including widespread muscle pain, fatigue, poor sleep, gastrointestinal problems, and depression regularly occur in people with various neuroendocrine disorders, including those manifested by HPA dysfunction. Researchers believe suppression of the HPA (quite likely from chronic stress), which results in lowering human growth hormone (HGH), dehydroepiandrosterone (DHEA), cortisol, and other hormones, is aggravated by the chronic pain and poor sleep associated with fibromyalgia.