TORTUROUS

This was unexpected on several fronts.

I awoke this morning with a little anxiety and a lot of panic .. in pain from my bladder as per usual and heart racing. I am meant to try and find a NHS Walk-In Centre to try and obtain my prescription medication but did not really feel .. up to it.

I had also awoken late after a night of not being able to sleep again .. probably thinking and panicking about a court hearing fast approaching and if I will get there as it is so early, due to my sleep now playing up, whether I will win and how much is resting on this court case? Probably? Definitely.

Well I say .. ‘late’ but not as late as yesterday morning where I woke, to my utter shock and disgust, around 10.45am.

But this morning I was receiving texts as I woke up and I realised that it was Tuesday as my daughter was off to her appointment. Her appointment over her cancer where I thought it was just going to be about what, when, where and how they will operate on her. Except it appeared there was more to this appointment than either of us realised.

Before long she was dressed in a gown and looked like she was going to have an operation and they told her she wont get home until 6pm .. though quite how the children were going to be picked up I do not know.

I still do not know what this appointment is all about .. unless it was being kept form me so that I would not get upset or worried.

I am upset and .. well .. worried.

Is not doing my heart rate any good .. not that I care very much.

It never ceases to amaze me just how much the human body can torture itself, for all the proclaiming by scientists of how much of a miracle it is. These scientists have obviously been very lucky in the health lottery and likely never had to endure prolonged physical pain nor mental pain?

I am in a room that is no doubt smaller than the minimum required size for a prison cell. Of that I have no doubt.

But being shoved into something this size with all the pains, stresses, anxiety and along with the tools required to try and earn an income at some point along with the tools required by someone with a disability .. like my damned bike and it gets a bit of a squeeze.

Then you have days like this. Days that no one should endure. Not even the devil himself.

After trying a different tactic on how to do what I need to do while cutting down the pain I spent last night trying to think of something else I could purchase that might help. When I was not focused on other concerns.

It feels like a million things are racing through your head at once at times.

I have often also stated that I honestly do not know what is worse at times, severe mental anguish or severe pain and when I experience each I always think “This .. definitely this!” The truth is that when severe enough I think they are equally as bad but beyond a point things change. The mind breaks with one extreme and passes out with another. This far I have only experienced one of those two.

At the end of the day you feel condemned .. on both sides. What makes it worse is knowing that others have knowing you put you hear and that many do not give a flying f.. shit.

Ultimately you ask yourself why in the hell you are here and what you are here for?

Maybe it is just me? Maybe being alone, or feeling lonely whichever you prefer, is what does this and maybe I am just unlucky in the set of circumstances I find myself in? But it was anxiety that drove me to my current situation and location. Once again brought about because others do not give a crap and those tasked to help or protect you also do not give a crap .. and lie and cheat to save money while awarding themselves all kinds of things?

What this results in is you praying for it to end in the only way you think it will end. Death. You even start to wonder about bringing this about yourself and whether you could build up the courage to do this and how you would do it.

It almost always came down to carbon monoxide for me, not being able to get a hold of the necessary drugs to do it. Christ .. I cannot even get the only damned drug that works on my condition .. sodium oxybate! Like I said .. condemned and knowingly condemned at that.

But we are not supposed or allowed to end it and nor can we be assisted. We have to stay alive .. endure whatever is thrown at us and .. do as we are told and what is expected of us, come what may?! If we were dogs we would be ‘put down’ or ‘put to sleep’. That would be far more humane than what the British government and the UK’s public services have been knowingly doing to people in recent years.

Of course there is that one other thing that stops you and that is that if she does survive what my demise would do to my daughter.

Does not sound like I have a lot of faith in winning my court hearing does it? Mind you this may be because I feel like I will let myself down over it all .. but failing to turn up? Though I am supposed to have a representative there I have had no confirmation that they will be.

I have also expressed my concerns about this but have not heard anything back.

Even my social worker friend says that they have been bad at replying to me and never seem to read my emails .. which they do seem to be proving correct even right now.

I do not even know what I would do if anything happen to my daughter while at the same time am well aware that her life is itself yet another living hell.

Once again another case of cancer and no fucking sign of any of the big cancer organisations that appear on TV in adverts begging for your money.

The operation for this specific cancer is not guaranteed and in fact has a chance of the cancer returning rather aggressively. It is also very close to reaching the stage, if it has not already, where it would require radiotherapy and chemotherapy.

During all this .. they have gotten out of paying for their rent, first only wanting to pay 25% of it and even now only 50% of it. They have lied and conspired to not pay Disability Living Allowance for a severely Autistic child, despite this being extremely dangerous, there being three other children and with one of those possibly being autistic too. To put the cherry on the proverbial pie she also has my disability which, like me, they have wondered about and missed for many years. But then some completely incompetent Doctors do not believe our disability exists .. STILL?! Morons! Yeah .. I had all the perfect symptoms listed for it for fifteen years before I was discovered what it was that I was afflicted with .. something that was both missed and I was not warned about when I had the severe road accident 36 years ago. Yup .. that was they key point that set it off .. with weird symptoms piling on one by one over the years for 22 years when my feet became affected. I then asked for another 13 years before I discovered what this was myself and even then they tried to deny I had it and then tried to avoid a diagnosis by making excuses to not refer me. One was that a department that specialises in Fibromyalgia within the NHS simply did not exist. Anywhere. I later discovered from a Fibromyalgia charity that this was a lie and that there were dozens all over the country.

Now at the time you only had two choices, incompetent or liar? I am pretty good at working things out and .. knowing people and I called liars. Many said I was completely mad or just plain wrong and I stuck to my guns because I knew what the facts were. Well those facts have now been exposed .. they are being paid not to refer people and to do that they have to .. you guessed it, lie!

Yeah that crap about Doctors being paid not to refer people? Yeah .. it is not only about referrals and it has been going on a very, very long time. Told you.

Now I am just babbling on because I simply do not know what to do with myself as per usual but this time I am .. somewhat restless and more so than normal. Because I do not know what I am going to be told in several hours time!

Do you know what life actually is, has been for a long time and on different levels?

Torturous.

THE RAIN MAKES WAY FOR PAIN

God an awful title but I am tired.

In fact that is what this post is about really. Becoming tired suddenly and bouts of pain.

I left the house today to do a couple of things. One if these was to drop a couple of things off at the new GP surgery he actually wanted to see and a few things he will not expect.

On the way there I was relieved that the pain was a little easier than it had been the previous few days but soon I regretted thinking this.

In the town things came on suddenly. I was aching strongly throughout my lower body from my feet through my calf muscles thighs up through my buttocks and along my back. Only my shoulder, his and knees were not playing up.

I was also feeling weak and tired and brute long nauseous too. I bought a female to female connector from Maplin for a rip off price of £8 when I normally avoid them. It was for a keyboard fur the tablet I got from Amazon for £3.00 but should not have bothered as it does not bloody work.

I waste so much money trying to save it out would be cheaper to just but the new expensive one to begin with?!

To emphasize this I am currently looking for a camera sling backpack, again, because the one I bought previously I cannot get my Tegra Note 7 inch tablet into, grrrr. As a result I have but been going out with my camera and have missed several dozen photo opportunities. Drat!

I have now purchased two backpacks and regret buying each one. All because they were cheap. The Lowepro sling was 26 instead of 50 but I bought the smallest one, 102, when I was likely better off with the 202 which us a but bigger.

Oddly enough the one I originally wanted was a Kata model that would have been perfect, plus you can change the strap from left shoulder to right which would be a big help in my shoulders, especially my right shoulder.

It is very true that no one could possibly even begin to guess what this condition is like and it is literally a living hell, make no mistake.

Hopefully my latest application for help will be awarded and I have done one application but have to do a few more over the next couple of days.

A freedom pass is next which is perfect because the council are currently taking me to court, but ignoring my emails thus far, lol!

Back to the town and things were getting surprisingly hard and it got so that I just wanted to collapse and die as I attended to get around. I accomplished nothing and had forgotten what I wanted to do. I managed to get a large can of Monster drink which I had not had in months and a double Mars bar as I wanted to take another 1000mg Paracetamol and 100mg of Tramadol despite taking the same amount an hour our so earlier but I did not care.

This is how I have ended up taking most of my overdoses to try and stop whatever it was from bring unbearable and because I have been prescribed the wrong drugs for over 12 years. The Doctors all new this and yet failed to spot the deliberate mistake.

I was going to avoid going to my friends store and just go home but the store was very close and the thought of sitting down, though there is hardly anywhere to sit, was too much to resist.

Once in the store I sat upon a section if tree trunk I had not noticed before and eventually the pills had an effect.

I told my friends how bad it had got yet did not feel as bad as lady few days when I left the house!

Tomorrow I have to attend the surgery for another blood test in as many weeks. This blood test is, however, the first in a series to rule out everything before I an sent to Guys Hospital. Though I think with what I left him today and my medical records turning up soon I think he will quickly realise the tests are pointless?

I left him the results of the Nerve Conduction Studies and Electromyography which itself proves that I was in the advanced and likely lady if the tests left available. After all he did state he would be very interested to see the results. A I had a spare copy the Neurologist never received I dropped him one off.

But when you are having days like the one I did today you cannot help but start becoming a little edgy and temperamental when your start thinking that they are going to force you to spend months jumping through the same old hoops yet again before they will even consider referring me.

It will not go the same way again I assure you off that. I will be quite blunt this time around.

It is damn scary to think you sure on the verge of slowing to a full stop and there is no fecker about to help and support you.

Very scary.

Oh well, I will do it all again tomorrow!

Lol!

THE EXCERPTS OF DOOM

Excerpts from

Figuring Out Fibromyalgia: Current Science & The Most Effective Treatments
by Ginevra Liptan M.D.

A great book and I will quote her brilliant insight into this condition which is both relevant to me as well as the fact the NHS pretends it does not exist.

“My doctor recommended exercise and anti-depressants, both of which helped me. But the exhaustion and pain continued, so I kept searching for something—anything—to feel better.”

”I am convinced that the fascia, the connective tissue surrounding each muscle, generates fibromyalgia pain” exactly what I have starred to Doctors several times only greeted with a roll of the eyes and shaking the head.

“I began to put together why certain treatments had helped me so much, while others did nothing at all.” exactly what I have manager to do too except I do not work within the field if medicine not have I ever done!

“Over the past decade, the amount of research in fibromyalgia has increased exponentially, along with its acceptance as a legitimate medical condition.” But this book was published in 2011. So by this date Fibromyalgia was almost all figured out. So what happened to the NHS on the subject? Why state all things cannot be linked when I then discover Charcot Mature Tooth Disease, Fibromyalgia and this books quotes another?!

“doctors that insist fibromyalgia is not real, even though there are thousands of studies documenting that it is.”

“Fibromyalgia is often treated like a second-class diagnosis.”

“No other word in medicine can evoke such a negative reaction among physicians.”

“Informally, I have heard doctors say much worse, which is why I half-seriously refer to fibromyalgia as the F-word of medicine.”

Need I say anymore? Oh but I will…

“People with fibromyalgia tell me how tired they are of being their own doctor.”

“musculoskeletal pain” it is listed at and yet half a dozen people in that department stated they did not know what I was afflicted by!

“After reading this section you will have a better understanding of fibromyalgia than many doctors.” Ergo they should start to listen and spend more time with me. A true Doctor and indeed any scientist like myself would and should want to know the answers to the puzzles. Not sit on their arses pandering to bureaucrats so they continue to get paid their over inflated salaries!

“have the flu all the time, with profound muscle pain, achiness, and fatigue. Repetitive motion tends to make the muscle pain worse. Sleep is unrefreshing, and people describe waking up in the morning feeling as if they had run a marathon overnight.” this should all start sounding very familiar with things starred in my posts since it’s creation.

“most common symptoms in a survey of more than 2,500 people with fibromyalgia were unrefreshing sleep, morning stiffness, fatigue, muscle pain, and problems with concentration and memory” add should this one!

“most troubling symptoms is “fibrofog,”” was preceded with ‘one of the…’  as well become clear shortly.

“most common are irritable bowel and bladder symptoms, low blood pressure, dizziness on standing, and poor balance. Other symptoms can include frequent headaches, numbness or tingling in hands or feet, and sensitivity to loud noises. More information about the causes of these symptoms of fibromyalgia,” I have mentioned the ears and even starred to my brother that I gave away Atomic Floyd headphones costing £130 new because ‘they hurt my ears.’

“alternating bouts of constipation and diarrhea” I believe I have explained this several times and even the pain being so great I passed out!

“the fact that people don’t “look sick,” has contributed to the controversies surrounding this illness” and I thank you!! I have letters from several do called Doctors making sarcastic remarks about me looking like a fit gentleman! So much so that I decided awhile ago that I refuse to remove my shirt. Just because I have a fit looking physique died not mean there is NOTHING WRONG. See earlier quote by this Doctor.

“People with fibromyalgia are usually sore in other muscles and tendons, not just the 18 designated tender points. Researchers chose those particular areas because they were found to be the most consistently tender in people with fibromyalgia, and not tender in healthy individuals” I believe I stated on here that I have a dozen symptoms that I refer to. That there are more but spend too much time concentrating on the one that are the biggest pain in the arse. That there are more symptoms but never counted and many I never even considered being linked all down to one thing. Like skin conditions and even the heartburn and vomiting!

“often begin after a trauma such as a car accident”

“does have abnormal test findings” even current Doctor states no tests for it, lol, as did every single health professional since I started mentioning the condition. See the following two quotes…

“Abnormalities can be seen with specialized blood tests that look for certain markers of immune system activity”

“only seen on certain specialized tests that are primarily used for research purposes”

Also of interest was THIS quote…

“Scans of blood flow in the brain reveal abnormalities in pain and stress processing areas of the brain”

“confusion surrounding fibromyalgia is illustrated by the multiple names given to this condition over the past 200 years” interesting is the fact that the condition has been known about for 200 bloody years! Lol. But did not exist because some people claiming to be educated let their fecking pride cause people unnecessary pain and misery, lol.

““chronic rheumatism” or “muscular rheumatism,” known by different names over the last 100 years…

“In 1904, during a now famous lecture at a London hospital, Sir William Gowers proposed that chronic rheumatism was caused by inflammation of the fibrous tissue surrounding muscles. He suggested that the condition be called “fibrositis,””

“stress response gets stuck in the “fight-or-flight” mode in fibromyalgia.”

“It felt like my spine hurt, my skin hurt, everything hurt. I was sleeping poorly, tossing and turning, and I awoke every morning feeling more tired than before I went to bed.”

“One day my hips started aching” and enter stage right, the HIPS!!

“I kept telling myself that this was not fatal and it was not cancer, but it felt like a death sentence to be 26 years old and feel like you were 100” I THANK YOU!! LOL!

“I had a really hard time accepting that it was chronic and incurable”

“Deep sleep is inhibited because the brain is trying to stay alert to fend off danger”

“dizziness upon standing”

“fainting upon standing seen in fibromyalgia”

“Messages sent up the spinal cord from the nerves that sense temperature and pressure can also be misinterpreted.” and the feeling hit and sweating!! Just today I was walking around town in agony from feet, knees, legs and ranked up on Tramadol and was in a t-shirt as I was boiling! …

“may explain the intolerance to temperature extremes or weather-related pressure changes” should I rest my case? Hell, NO!! It will become clear in the next few days why I am putting this here and why now?! Because if I have had my difficulties then I dare say that others have too. This way I can help many different people and many different organisations while setting a really big TRAP?!?! LMAO!

“pain of fibromyalgia can be so debilitating and severe” I am loving this! 😀

“Muscles also function normally in fibromyalgia, which initially lead many doctors to conclude that the condition is not real, and must be due to psychological issues” the needing psychiatrist stance, lol. It gets way, WAY better!

“There is indeed something abnormal in the muscles in fibromyalgia—we just have not been looking in the right part of the muscle”

“Imagine hundreds of long rubber bands” I use the term rubber bands several times in this blog!

“Anyone who has experienced the foot pain associated with plantar fasciitis knows how painful an inflammation of the fascia can be” this is just Plantar fasciitis alone. Please recall that it is not text book Plantar fasciitis and that I have emphasised this for ten years plus! It gets WORSE the more you use your feet and NOT GET EASIER. Also it is bilateral for me like most things are!

Ooh I am in ecstasy right now and thinking of the impact that this single solitary post is going to have in the coming months. No doubt I will help Ginevra Liptan MD sell a few cores of her book titled Figuring Out Fibromyalgia: Current Science and The Most Effective Treatments. I downloaded it via Amazon and read it via Kindle.

Hmm remember I stated I was against books being digital and in favour if the real McCoy? Well that stance has changed a but due to portability, now your beginning to get why I also bought a tablet PC I was also not in favour of, I am beginning to see benefits. Though I would really rather be happier buying, or GETTING, both and think it a bit of a rip off at times. I have the app called Comics, be Comixology or something like that, and the DC Comics and Marvel Comics are veer dear to download. Also digital only is not very collectable not good fit proper fans and collectors!

I bet I signed like I had finished? Sorry I wandered a little..,

“Two recent studies using specialized staining techniques of fibromyalgia muscle biopsies have revealed excessive and disorganized collagen and increased release of immune cells and chemicals. These abnormalities suggest excessive tissue damage in the fascia in fibromyalgia”

“This may explain why anti-inflammatory medications like steroids and NSAIDS have never shown any benefit in studies for in fibromyalgia” I believe I not only already made this clear about drugs that do not work and possibly screwed up my kidneys but even have several secretly recorded audio takes on here starting this to a good few Doctors who then did feck all?!

“As early as the 1840s, a French physician noted that diet could affect the development of painful muscle aches” and now yet another cause which I have covered previously and also requires a great deal more money than they are paying me to live on, lol…

“inappropriately getting into bloodstream through a leaky gut” never heard of the term ‘leaky gut’ before.

“Using gentle exercise as medicine stimulates growth hormone release and encourages deep sleep” I previously stated about my exercising and fit looks! I did this despite the fact that this could give a bad impression but thought it better to be honest and open. I just one I would find evidence for what I said. I felt much better when I was on Disability Living Allowance because I had far less stress and a much better diet among other things!

All things end up in my favour just as I one they would.

“My fatigue improved with Xyrem, a medication that induces deep sleep” Xyrem is the drug I referred to in very recent post that was awaiting approval by the FDA in America. It actually hero’s you go into a proper deep sleep which Fibromyalgia sufferers hardly ever do, I now know I do not.

“People with fibromyalgia often tell me that their symptoms get worse after eating certain foods” also seen stated that you end up allergic to caffeine! For those paying attention here, died that ring a few bells too?! Lol!

“abdominal pain, bloating, constipation, diarrhea, and nausea” still all relevant to me as I stated and this lot is on my medical records too!!

“Don’t use the bedroom for non-sleep activities such as work or eating” oops umm I do and this is because of lack of help, money and support along with energy prices, lol.

“About half of people with fibromyalgia have an additional sleep disorder such as sleep apnea or restless legs syndrome” the restless legs but, nothing about the arms yet and curiously my daughter has sleep apnea which scares the hell out of her. Cannot remember what the symptoms are so cannot say if I have experienced it. Damn it now I remember, odd breathing or you still breathing I think. Yes I do get experiences like that but not as bad as my daughters and others I read about. Thank god, have enough as it bloody well is, lol.

“Usually people with sleep apnea are not aware of the multiple awakenings/arousals they experience each night”

“Lying down and trying to relax activates the symptoms, and kicking or moving the legs give temporary relief. As a result, most people with RLS have difficulty falling asleep and staying asleep” damn it! Taking forever and I am waiting to get back onto Plantar fasciitis! Lol.

“None of the commonly prescribed sleep medications like zolpidem (Ambien), eszopiclone (Lunesta), or clonazepam (Klonopin) improve sleep quality” Now I do believe I previously stated that many drugs have never worked, or had much effect, on me?! But diazepam did have a calming influence but refused it repeatedly.

Do not comment and quite what is obvious on these drugs as I did not get this far without knowing and finding out many things, Lol. Plus I might get quite pissed and rude, lol.

“drug called sodium oxybate (Xyrem®) that increases both the time spent in deep sleep and secretion of growth hormone” that new drug again I need to research.

“In narcolepsy, it takes about three months of regular use to reach maximal benefit. Since the fibromyalgia studies only looked at eight weeks of use, there is potential that with longer use it could be even more effective.” NARCOLEPSY!! That was the other condition that can cause muscular problems. So there are now the three listed in the same post that can cause multiple muscular pains that the NHS and three dozen Doctors said was NOT POSSIBLE! Charcot Marie Tooth Disease, Fibromyalgia Syndrome and Narcolepsy. God knows if there are others. Post Traumatic Stress Disorder could be another?

Currently my RSI pain is now becoming a huge headache, lol.

“It would be very interesting know whether using sodium oxybate to improve sleep quality could reduce the cognitive difficulties known as “fibrofog,”” this would be so very bloody cool!!

“I always spread out the groceries into many smaller loads, rather than carrying a heavy grocery bag into the house” dies this now explain a few things and sound familiar? Lmao!

“Even more impressive was the fibromyalgia patient that walked in to my office after three months of sodium oxybate treatment who told me her pain was gone. This was absolutely one of the best moments of my medical career” found this a very interesting statement!

“Soon after starting a regular walking program, I developed heel pain and plantar fasciitis” A-HA!! Right now then, I starred that many of my symptoms were affecting me long before the Plantar fasciitis surfaced!! All easily checked throughout the blog posts as well as likely backed up by documentation. Will here is the author, herself a Doctor and a very good one due to her inquisitive nature and intelligence, steering that she actively suffered from Plantar fasciitis and at the exact same time LINKING THE CONDITION to FIBROMYALGIA!!

So ergo when I stated repeatedly that I did not have PF and that it was NOT A TEXT BOOK CASE they should have made the link. One which flick through my medical records and it would be obvious that I have Fibromyalgia, THE END!

Normally when all tests fail to diagnose then it is considered to be Fibromyalgia, except this is not exactly true and way it of date by around 15 years. So why do they say it?!

Also my 120 symptoms, give our take a dozen or so, should have also fine the same thing, this is despite the fact that probably the majority never got mentioned because I was using all my time and pain concentrating on the dozen things they never successfully diagnosed.

Added to these facts are the now likelyhood that many of those I thought a successful diagnosis are actually wrong.

Indeed there are two other things I do have that are not linked to Fibromyalgia and this are my Inguinal Hernias?! Oh except the surgery on the first had left me with pain which COULD be linked to Fibromyalgia and the other Inguinal Hernia?

Well they lied about that one and not only did I prove this but also pulled the offending Doctor to account who then stuttered and stumbled while I was recording him!!

END OF PART ONE!!