DAY OF BURNING

Whoa I thought I was going to pass out today.

The heat was unbearable for me.

I felt light headed as I limped along to Sainsburys to get some form of food in the house. I then lumbered around Sainsburys then headed home. By the time I had crossed the main road just outside Sainsburys I thought 'I am not going to be able to do this?!'

I walked across a park and I had to stop several times.

I thought I was just going to pass out.

I had put on three lots of factor 15 sun cream but I kept sweating profusely and it was just running off. In fact I was at a friend's house for a couple of hours before attempting Sainsburys and 15 minutes after getting there I leaned back on the sofa and he exclaimed “Ewww! Not the sofa!” and I asked what was wrong, thinking something unpleasant had been left on the seat and I had laid in it?

“Your soaked!” he exclaimed again before I said “Oooh no it has evaporated now”

He had noticed how absolutely soaking wet I was from sweat and I said “see? This is what it gets like and it does not need to be this hot either!”

I was wearing a baggy sports vest and shorts too.

It was the worst kind of heat for me … sudden and humid!

There I was dragging my arse back to my house, stopping every now and then to lean on my walking stick will leaning towards the ground wondering if this was the time I was going to pass out?!

Jesus..if I had known I would have not gone out. I had made it to a shop I wanted to get to yesterday to buy some coils for my vape tanks. Even that was hard at 9.45am it was already hot. By the time I had gotten there I had decided I was not getting on another bus while it was this hot. One of the guys at the store was hiding a grin and I asked him “what?!”. “Nothing!” he replied and I guessed it was at the amount I was sweating.

People were fanning themselves on the bus but nobody had sweat soaked arms like I had.

After too long a time I will eventually get used to it … a little. I will still sweat but it will be less unbearable than today. Erm .. I think!

Bit of a pause there, like 12 hours or more, sort of ran out of steam.

Now it is the following morning.

Speaking of steam .. god this weather .. it seems to want to punish you one way or the other does it not?

Got a surprise this morning with some anxiety and panic. It is really weird this crap as it just seems to run under its own power and can go off at a tandem. The deep seated fear is losing control but the panic and anxiety seems to just kick in and when it does you feel as if you have lost control and this makes the anxiety even worse. It is a vicious cycle of ever decreasing circles. The anxiety fuels the fear of not being in control by losing any ability to do anything.

Maybe this comes from being on my own for so long and having to fend for myself with nothing in the way of support? Physically or emotionally?

Even when I have answers I am never happy and maybe it is because those answers do not provide me with a clear path? I am always looking for more to see if there is some chink in the amour I am presented with?

It also does not help that I have become someone who is also fiercely independent because I suffer with something that hampers this in a big way.

Out of the people I lost that I could talk to there are two I would early love to ask questions of that presented similar symptoms to that which I do. But then I ask myself if the answers would be able to provide me with the necessary information to be able to reach new conclusions and show me different paths?

Often in my life it has just seemed that the worst possible things take place for what was unfolding and most of the time I did not even know it. But it happened enough of the time that forced me to question a number of things. Like with the number of people, from a mathematical perspective, that exist today it stands to reason that there will be those that live their lives scarcely putting a thing wrong without even realising it? To us it would seem that there is someone that we perceive to be almost born lucky? Maths dictates that if there is one person at the top of the scale there must also be someone at the opposing end of it?

As an example if I was aware that there was a chance that my soul could return and there was some choices in the matter but had to come back I would choose anywhere but a life in London. Little did anyone back in the seventies that in a few decades time things would rapidly get worse in London, far more crowded and quite so expensive. I had no idea that there was a segregation of groups and that one group would be treated far worse than many others. Even when it occurred there were factors that were not very nice but went in your favour to actually get treated fairly it still made no difference to those treating the groups badly.

This results in feeling ways that contradict the drive to survive .. because you lose the will to do that quite literally. The feelings are that intensely bad. I think about those that ave never had these feelings and I think about just how bloody lucky they are and the fact that they do not even know that they are lucky.

I wish to God they made a machine so that everyone could feel these things. Then someone that can dish out bad news has to be forced to be wired up to the machine, it switched on for ten minutes and then the person told 'imagine feeling like that for 24 hours a day for weeks or months on end!'

Then imagine that you would like to explain these possibilities to someone when you are going to meet them and yet you have a constant and frequent memory loss where you forget to state certain things that you planned to?

When I was told my housing would become affected I have been kicking myself for week, feels like many weeks, that I did not ask what would happen. My mind should have been consciously aware of the threat of a return of my old anxiety attacks but I did not think to ask. I just said “oh, right”. I did in fact send a couple of emails a few days later when I had then become a wreck but I got no answer. In fact when it came time to phone them when they had told me to they actually thought I had done something they had told me to when I had in fact had not because the Jobcentre had prevented me from doing so.

I have a letter with an appointment on it coming from Mind. Cannot believe I am going to be meeting them again, much different location, after over 20 years. Wait until they get a load of me.

I also wonder whether or not Citizen's Advice will suddenly realise one ore two things in our next meeting next week?

I only hope that they tell me of the paths I have been looking for that everyone keeps shutting the door in my face over? Otherwise what is the point?

I hope the days where the belief of talking about it makes everything go away? Because it does not and was never going to in a vast majority of cases. If I wanted to talk I would buy a Budgie.

Despite my generous applications of factor 15 sun cream I did get a bit burnt yesterday … well you cannot stop going out just because the sun is in the sky and it is hot, you need to do things as many of you will appreciate. I just hope the burnt bits were not too bad and I can get out of the house?

I really hate sitting around doing nothing but I struggle too find things to do and the weather was recently crap and now that the sun has finally decided to come out and show its face it is far, far too damned hot! I am sure that something like this happened last year too?! I distinctly remember things going from crappy clouded over days to sunny and searing heat?

The problem is I have to cycle to do the things I really want to do, enjoy doing and need to do … I like killing three birds with one stone. Cycling is the light exercising I need to do for my Fibromyalgia as well as being something I thoroughly enjoy and added to that in recent years I have managed to make it … productive too by taking cameras out with me and taking photos and filming wildlife I am always looking out for anyway. Plus when I was the the insomnia years I used to stand a 50/50 chance of actually falling asleep in the early hours of the morning instead of around 3am to 6am. So I was killing four birds with one stone for a long time and how many people could claim to be able to do that? Still in the same bloody rut though.

It is supposed to be bloody hot again today but right now I see a thin layer of cloud.

I was hoping and waiting for a few weeks of sunny weather around 21 Celsius without wind and no distractions or any threats of impending doom. Instead I have had rain, wind, roasting Fibromyalgia hating searing heat and with two threats of impending doom. Go figure.

I think that emergency paramedic was surprised I was on my own and had been a long time, good job I did not tell her how long I had been on my own. I fear I might have had to use CPR! Lol.

THIS IS THE WEEK THAT MIGHT BE

Well I have gone back to waking up early.

Very little in the way of anxiety though. For now.

I did have a weekend with nothing really happening and ended up not going out Sunday at all, not even to get tobacco. I just could not find the drive to get out. Not that there was much I could do.

So now it is Monday morning on the 18^th July and I have just a few days left before I have that blasted decision made for me and God knows how long before I get notified of it.

I only have two places I can visit locally and both are friends and I try very hard not to go there too much. Not one for wanting to even come close to overstaying my welcome.

It is 7.45am right now and I checked my emails without thinking of the time, lol. Of course there was not going to be any of the responses I am hoping for, asking me to come down or call them and then come down.

These limbo like periods really are the worst.

Of course now the weather decides to pick up now that I am all over the place and cannot think straight. I have been waiting to get out wit my two cameras filming whatever I can. One of these is a GoPro type camera for acquiring sub-aquatic filming and photographs. With that aquatic world opened up to me there was now a potential to spend the summer acquiring and uploading hundreds of new films I have not acquired before. This would have propelled my YouTube channel and two of my blogs much higher and therefore the traffic much higher too.

Best laid plans and all that.

I just hope I can find the inspiration and drive to get out and do something? Even if it is just a few times and I manage to acquire a dozen or so things to add to the collection.

I already have a shop singled out to sleep in but it is the case of panicking about my belongings and the council are supposed to store your stuff if they make you homeless but I have never done this before. That is if at all goes bad of course.

To get out with my cameras I am trying to think about travelling light and not pack up a big camera sling bag to go out, too much in the way of effort needed.

The GoPro type camera is small and the other one I have a small holster for, though I could not call the Nikon P900 small … exactly. But it is a holster and has a belt loop so I might be able to manage something … I hope.

I still think of the situation as weird and very unexpected as all of last year I had this picture of what 2016 would be like and it has turned out very different to how I thought it would, quite the opposite in fact.

I sometimes wonder how many people ave actually died because of situations like mine and how I now notice that it is never talked about or reported. I mean there must be mustn't there? Those that take their own lives, those that have heart failures or attacks? Maybe even those that die of exposure? Maybe even those murdered by someone in the middle of the night because they are out and exposed?

I mentioned about sleeping on park benches to a mate and he said “You do not want to do that. You don't know who is about!” lol.

Of ccourse I am still awaiting my second of two letters regarding hospital appointments.

I have also obviously asked myself about the outcome of these hospital referrals and not just about what the answer might be. Because I know that they have … lied about the test results in the past and on here someone in my arcchives are recordings of Doctors telling god awful lies and one specialist being confronted by me and admitting he lied about an ultrasound test result. It was easy to confront him because not only had I seen the monitor and that it showed two things but the man performing the test spoke about them. On black lump on my right side of my groin, where an inguinal hernia was repaired and pain was emanating from and a new but small hernia starting on my left groin. This second hernia was in fact .. predicted by the man that repaired the first one, a Martin Klein.

Now I would like to think that because I recorded them and because of these blogs they would not be so stupid as to try lying again about test results.

But then I did not think that the DWP would be so stupid as to single me out and come after me again and in such a stupid and backwards fashion too. Backwards because they are going after my Incapacity Benefit, yes I still get it, and therefore my Housing Benefit and yet not touching my Personal Independent Payments which is in effect my Disability Benefit. But they are doing it this way which is kind of … well backwards, for want of a better term.

Mind you I have since had a questionnaire regarding my Personal Independent Payments and despite the fact that they are 'Is this portion of your condition better or worse' questions you do have to wonder. Especially as reviews are normally every three years and it has been only eighteen months?

Of course as a result of the actions of another of their departments the answer to around 6 to 8 or more of the questions is 'harder'.

Therefore if they decide to cut or stop that benefit too then they would have made it damned obvious they have singled me out for whatever reason. This is eater a random singling out or it is because they want to stop me blogging about them.

Oddly if enough visitors to my blogs over the past four years had told enough people who had all visited my blog then this would not have ever happened.

Part of the reason for this is not getting a hold of some court paperwork I thought I was going to get at the end of last year. If, of course, there was any court paperwork at all. Some think there wasn't...no everyone now thinks there wasn't if I am honest!

Still, that was then and this is now and I have to concentrate, if I can, on staying on the right line, if there is indeed a 'right line'.

To confuse things further a friend of mine is going away, yeah I know could you possibly throw anything else in at this point right? The only thing is that when he goes away he is giving me a key to look after his animals. You might think a week is not too bad but is a lot to take on with everything that could happen to me. Well how about two week? A bit much? What about three?! I am not going to bother with four weeks and go straight to the crux of the matter that it will be 5 weeks and two days that he is away.

So with everything else that might be happening I have someone less around to talk to for five weeks and then have to worry about two Goldfinch Muels, a Budgie, a four foot aquarium, three ponds with frogs and toads in, one with Koi Carp in and a Snapping Turtle. Yeah … that Snapping Turtle there is a video of on my YouTube Channel. Oh yes and some Adult Fire Salamanders and over half a dozen your salamanders.

I think that is everything? Lol.

I have told him that I simply cannot go in every other day like I did when he was away last time, it really took a lot out of me and that surprised and worried me. There will be someone going in every other day but they are not really animal people and have a tough time looking after themselves by all accounts, well one of the two has difficulties.

It may sound really, really stupid that doing anything seems monumental and I agree, it is tupid to me too. I dare say anyone that has had anxiety attacks or Fibromyalgia may know where I am coming from and they would likely agree too.

After all getting out on my bike always helps me deal with things and has done for a along time, as well as giving me the light exercise needed for Fibromyalgia and if you did not know sitting on your backside with Fibromyalgia can be as bad as doing too much. Light exercise keeps things on a certain level whereas doing too much or too little has a very negative effect. On the pains, anxiety and depression you get with it and even my skin seems better once I am out on my bike every other day and have done that for a couple of weeks. Otherwise it starts to look like something from a horror movie and takes a load of pure tea tree oil to keep it down.

I used to think many years ago that it was UV radiation from the sunlight in summer that kept the skin conditions at bay but I now know it is the exercise, or rather cycling, that has an effect on everything.

As of right now I need to get some little twisted coils for my Kangertech Subtank Mini atomisers I use for vaping. I also have to take Java Moss from my aquarium to a friends store as I promised him 5 days ago. But the tasks seem monumental … or at least always do until I am out of the house for around ten minutes. Ten I will enjoy it to some degree and it will take my mind off things momentarily and if not for these things I would probably not get out of the house at all?!

NO LOVE WITHOUT THE DRUG

Well then, I see that my line spacing is still off in Google's own Blogger Android app?

Even with a new phone that still occurs and so too do the tags, or labels, go missing?! Meaning that the problem is not phone specific so must be very widespread.

*SIGH* all those updates.

Doctors and drugs are a laughable thing these days in my view. After a very rare and relaxed evening of late I have woken a little later than normal but to a building anxiety attack. This was heartbreaking as I thought that now I had taken my first Propranalol beta-blocker I thought they may have subsided for good.

I checked my emails for reassuring replies from Citizen's Advice or Mind but there was nothing and I started to look at Mind's website to see how you actually get to talk to someone. I thought 'you never know it might be a self-referral or walk in service' as I simply cannot recall.

Then I noticed that when I emailed I sued the wrong email address so I emailed again and used another one I found on their site.

The funny thing is in this instance is that I have been waiting for a reply from them and then I have had this anxiety attack that hit me so hard I lost the use of my legs. Since that has happened I have been seen by an emergency paramedic that showed a littler concern, spoke to my GP on the phone who showed some concern, spoken to my GP face to face who showed some concern and prescribed Propranalol and told me to speak to Citizen's Advice about help with support, taken the Propranalol and got up the next morning experiencing an anxiety attack. Yeesh.

So I started looking up about Propranalol and whether it makes you drowsy and the best time to take it and I found something that is just ... typical.

I have mentioned many times over four years that I have wanted to try a drug called Pregabalin but that I have been refused this three times by three consecutive Doctors. Gabapentin is the better drug, the more modern version easier to tailor and, the truth, too expensive.

The hilarious thing about not being given Pregabalin is it is actually the third best drug for the condition of Fibromyalgia. So I literally get given a fourth rate drug that is widely known to make people ill. Yeah ... that is how utterly ridiculous the medicine industry has got. Top of the pile and the only drugs that deals with the core problem is sodium oxybate which is only allowed for narcolepsy. Second on the list is Milnacipran they discovered seems to target the pain receptors specific for Fibromyalgia better than any other drug but is also not approved. Then comes Pregabalin and then Gabapentin. There might be some others that fit into that top three I do not know about.

Oh yeah Cannabis is good too ... but we know how that one ends, lol.

Yeah so there I was just doing some research on Propanalol when I saw someone ask a question about anxiety and mention the word 'Lyrica'. I  thought 'hang on? Isn't Lyrica Pregabalin? Why is it mentioned in a queestion that includes anxiety?'

Well would you believe that someone was given some, lucky *£#4!, by someone else for their anxiety and they worked?!

Oh dear. When you have something that affects you so badly to the point that you want to sling yourself in front of a bus or lorry and then you read that the drug you have been refused for four three years would actually not only get rid of your other condition but this feeling of suicidal doom too?

I just do not understand the people in power who run these organisations in such an idiotic fashion due to just how narrow minded they are. In fact 'narrow minded' is something of an understatement in almost every instance. How long have we had smartphones and the Internet in our pockets now? It is not the simple fact that we could find the truth out on our own but more the case of how can they possibly think in any way that we wont?!

Added to this is the fact that this is not something new or that only occurred in the last couple f years either. I was late to the smartphone party but I have owned a Nokia E71, Motorola Defy, Motorola Atrix, Moto G and now a Moto X and the Moto G lasted me over two years. Each phone I have had has lasted me close to the two year mark. The Moto G probably closer to 2.5 years and maybe even 3? But let us leave smartphones out of the equation for a moment and ask ourselves how long as the Internet been about? I was using it in 1997, possibly 1996, and it is now 2016 so closing in on 20 years.

Mind you it took the health and medicine industry more than 80 years to realise that Fibromyalgia Syndrome is not a made up condition. Yup hard to believe that around the world, or at least in America and Britain, thousands of people who had never met was all having these weirid collections of symptoms occur bbut they thought they were so intelligent that they could state they all made them up because they were too ignorant or lacking the intelligence to realise the truth.

Oh god, I hope these drugs do not take even a fifth of that time for them to realise that they will save their economies and tax pool a lot of money to approve them and prescribe them?! Lol.

I have also seen the term 'Fibro Warriors' used and at first wondered what it meant before then thinking, 'yeah you need to a a bloody hardened warrior to deal with the cursed condition!' LMAO!

The question asked by someone in the link below is 'Will a Doctor in the United States prescribe Lyrica for anxiety/panic attacks?'

https://www.drugs.com/answers/will-a-doctor-in-the-united-states-prescribe-286718.html

AARGH!

AAARGH!

Cheese Louise!

My bloody word … this morning was the worst morning so far!

I was up around 6.30am, not a good sign I will get to in a moment, and downstairs scouring a very unusually slow Internet for help.

I have had this in the past, I most likely mentioned previously, and it is one of the worst feelings in the world and pain is preferable to this. I think this is why people 'self-harm' because I have considered it both now and previously. Along with the ultimate way to switch things off for good!

Back when I had it previously I had terrible trouble sleeping at all. Considering that the Fibromyalgia Syndrome I suffer with fairly badly is because we do not get any restorative sleep at all, this was not good. Of course at the time I did not know it was Fibromyalgia despite the 7 years of asking. I had to go and find out for myself and when I did realised that my GP at the time knew what I had as had everyone I had seen in the NHS for two years previous to this.

So at the end of the day I was left to rot, in pain physically in over a dozen places, terribly embarrassing symptoms, memory that fails to function and with anxiety that made you want to take your own life. Yeah I got angry with the system because I realised it cheated and was full of people with no heart, feelings, compassion or capable of regret.

Every single little thing you need to do starts to become a 200 Meter Olympic sprint! Every time you think of something you have to do and I mean anything … the anxiety strikes. Every time. You think about shopping you need, a bill you have to pay, having a bloody bath or shower?!

If you go to any site catering for mental health issues it will have a list and one that is always present is 'You find normal daily activities difficult'. Or something to that effect.

Combine that with 6 foot pains, knee pain, back pain along with embarrassing sudden vomiting flaky skin and with the worst possible embarrassing thing I rarely mention second only to being drugged to unconsciousness and taken to the high street and waking up there naked.

It is something that you wont want to admit but that you can .. involuntarily .. do, do to yourself?

Then add memory loss that occurs several times each day.

So this morning was really bad .. I am not one for self-harming, previously going straight to suicidal and sort of have, but I wondered if there was some relief in it today. Because …

I left the house to drop off some cheap coffee to a store owner I know. After a bit of a chat and telling him I might admit myself to hospital, though asked myself why I would bother. I also had en Employment Support Allowance application form that the Citizen's Advice … oh crap, .. right I have emailed the Citizen's Advice Bureau. I had forgotten to do it. Same old, same old.

I took an ESA claim form to the Job Centre as was instructed by the Citizen's Advice but they refused to take it as I have an ongoing thing with them. They guy also told me that Employment Support Allowance was only a temporary benefit and that people had to be re-assessed. Interested now that he said that I asked the guy how often do people have to be assessed? He said “Every 13 weeks” and I said “Where? Here?!” and he said “no, an outside company does it” and I replied “oh you mean companies like Atos?” he made some remark about how they are not so involved in it anymore but basically said in a roundabout way that it was. A company like that. I then stated that it was stupid to drag people with disabilities all over the place every 13 weeks if they had conditions like mine that were incurable. He made some of the crap excuses, jobsworth stylee, and I could have told him that I know they have asked people and me to go places like Ilford and even Chelmsford in London boroughs. Itt is not really worth the effort and mostly they do not have the common sense to agree with what you say anyway, despite how bloody obvious it might be.

I was in pain and feeling somewhat … out of it, or stoned even, as I was getting about but the pain seemed to have an effect at lowering the anxiety. Due to this and realising it had, had this effect previously I wanted to continue walking until I died.

I then thought 'perhaps this is it? The reason people self-harm? Perhaps I should try it?' Anything .. absolutely anything is better than this!

Except perhaps the pain I was getting in my stomach recently? My GP held to fingers, I think it was, into my waist on my right flank and asked me to cough. Something hit his fingers that was not supposed to, apparently. Hence why I am still awaiting one more hospital letter.

Each time I have grief, pain from my stomach, anxiety attacks and difficulty getting about I ask myself why it cannot be something that just kills me. Though this is still a real possibility from the blacking out and falling unconscious for ten to twenty minutes at a time. Find out at some point in August, possibly.

I literally thought this morning about walking in front of a bus or a lorry but this would not be fair on the driver and witnesses on any bus. Would be a harrowing thing to put people through.

Good God, I wished I had known I was still capable of having these anxiety attacks! Also about any threat to my home!

Hmm .. I am finding something out for the first time now! I shall explain ..

Now first off for a time and was about to look for someone I could talk to about certain things .. my blogs for starters. I had an idea to start my own business some years back and even way back then, before they kicked me off wrongly for 7 years, I asked for help.

I do not have to tell you this as many others, albeit begrudgingly at times, will tell you or admit that I am not only good at what I do but also how many things I can do and know about. Well I do have thirteen blogs and do not cover every topic I am into or know about.

I have also thought about doing something part-time, which really is all that I could handle with my conditions but I do have to be careful over certain .. things. No one wants to sit on their arse doing nothing all day and I certainly don't. I even thought about asking the Citizen's Advice on my next meeting with them about this … is like a kind of help, advice and support role?

This is all proved because of the existence of my blogs which also show what I can do.

I would dearly love something to do .. I really would and struggle to find things to do most days, as the weather is crap as opposed to good where I would be out and about on my bike with two cameras, one a massive 83x zoom Nikon and the other a waterproof camera that is more or less identical to a GoPro.

I cover both these purchases on my blog and my YouTube channel.

Well I was surprised at the pressure that the DWP and their ESA were putting on people and I decided to go and have a look around the Internet.

The good bit: they can offer wellness classes such as walking groups, CBT, help with CV preparation, training to change occupation - all sorts of things.

This was an interesting part of a web-page I was looking at.

The other group of people on ESA will have been placed in the Support Group (a misnomer in my view, as they don't get any 'support') because they are deemed too ill/disabled to participate in any work related activity.

This was another interesting one but I am so negative about these people, hear so many bad stories and have heard them lie to others, to me and even on TV a few years back. Documentary about Job Centres that claim they have lots of jobs but were proved to be all fake. Turned out to be very old jobs but pretended that there were jobs so that they could screw people on benefits that were actually looking for work!

This is so wrong to the point that everyone ever associated with this that carried out this shit should be fired on the spot. I would love to have a Job Centre to go to, to genuinely speak to someone about help. Tried it when I was registered disabled several years back and they told me that despite me being disabled there was no help available?!

Well that shows how much they cater for people with disabilities looking to either work or start their own business?! Fan … tastic! Not!!

You need good medical evidence for any appeal, and it needs to be specific to the grounds of your appeal, not just saying you have Lupus. It is not about your condition(s), but about the functional difficulties you have because of the condition(s).

Annnd … worrying.

If you have a condition then it comes with problems, symptoms and implications. Including Lupus and I find it strange that they mention this because I know of someone, a friend's sister, who has this. She was on DLA and like me and tens of thousands of others was kicked off. Also just like me she fought for years, not as long as I at 7 years, to get it back and did. When I mentioned to this friend that the DWP were singling me out yet again and now going after my Incapacity Benefit she told me they were doing the exact same thing with her sister, yet again?!

She even had an MP help her and write to and complain to the DWP! I think the MP even accompanied her on a visit. Now that is an MP I would like and would also like all MP's to be like. Not just swanning around with on overflowing feeling of self-importance!

The good bit: they can offer wellness classes such as walking groups, CBT, help with CV preparation, training to change occupation - all sorts of things. It does not involve being told to apply for jobs. They cannot ask you to do anything that would make your condition worse. There is really nothing to be afraid of. If they push you in a direction you are not happy with, complain to their manager and complain to the Jobcentre.

The good bit about that? “They cannot ask you to do anything that would make your condition worse.' The webpage.

https://healthunlocked.com/lupusuk/posts/441867/what-does-it-mean-to-be-in-the-esa-work-related-activity-group

Apart from asking a guy that can have a potential two dozen black-outs per day, in constant pain and on loads of medication for it, forgetful beyond belief and can do,do oneself or vomit all over someone to drag his arse across London to submit to a medical assessment!

It is literally a contradiction. So your disabled and they ask you to travel several miles on several public transport vehicles so that you can have a medical assessment to see if your fit?

If you Do turn up then your fit and if you don't … they cancel benefits, despite being accepted as disabled a year previously? For an incurable and degenerative disease?

Dr Kirkham at Guy's Hospital told me, and audio recording of it on here, that he has patients that are quite literally bed ridden! I really, really did not want to hear that.

He told me that he could tell I had, had Fibromyalgia a long time as I had worked out that cycling is good as you need light exercise and that you cannot do too much nor too little. The latter is one of many reasons why I could only manage something part time but even that would scare the crap out of me.

I do not want to be sitting on my arse all the time, I do not want to be in pain all the time and nor do I want to be bed ridden!

Over doing things normally shows up, not immediately which is the weird thing, 24 to 72 hours after the over-doing it. Or more accurately 'flare-ups'. This can come in any number of forms and simultaneously too.

So I have no issues with doing something .. part time but it has to be somewhere I can reasonably get to by a single bus and not in busy hours or by bike. If the latter then somewhere to place my bike is obviously a must. There are many things I know about and therefore many things I can do.

Be bloosy typical if they placed me in the Lea Valley Park Authority?! I would like working with and for nature but I have a little bit of a history with them on here. I know they are on a bog con, plant British Orchids and then probably go to each local authority the park runs through and asks them each for £Millions.

They are also really bad at park management and I have lost count of the number of people I have spoken too that live locally to the Lea Valley Park, some even knowing a thing or two about nature who complain to high hell to me about their management, or lack thereof. I have even given them some free advice that they ignored but did reply to my email and told me lies about areas of the park being all natural. This particular bit has not only pond liners running underneath the ponds but also a tough liner running several hundred metres! I kid you not.

So the ESA have this WRAG thing, Work Related Activity Group? Sounds good as long as these people have a helping hand and not a cattle prod to force you with.

I notice they have CBT which will be for sufferers of mental health problems? Yeaah … CBT, or Cognitive Behavioural Therapy, is good in theory … except you have three problems …

1. It does not always work
2. It generally is for people who stress out over spilt milk and not those that suffer attacks over pretty major issues
3. Any medical professional in the mental health areas think this CBT is like some sort of magic when in fact it is nothing more than snake oil … or placebo effect mechanism

I belong to the latter. Nothing will help you until that major threat goes away and you are re-assured that all is well. Or it is proved to you.

With CBT you are given tasks to do … you know … tasks that are not important and you have difficulty doing the mundane normal daily activity ones? Yeah … that is stupid. How can I concentrate on a series of tasks when I have one driving me towards suicidal thoughts? The feelings do not stop until the threat is gone or you take medication for it.

Now if you were extremely unfortunate to be someone that has to live with what I am experiencing all the time and without any major threats of being homeless or starving to death … yeah Cognitive Behavioural Therapy might work in a good number of cases?

I found that with some strong believers of CBT that if you cannot focus on it then their attitude is that you obviously do not want to help yourself so they cannot be bothered with you. If we could help our bloody sevles then we would not have gone to them in the first place!

Someone really needs to sit each of them down and explain how the Internet works and that you can find out just about anything .. for free. I know because I have been using the Internet and had email addresses as far back as 1997. 1996 even when I did my Access To Computing course.

Now on the Fibromyalgia Action UK site it states that the DWP, or rather the assessors, are treating Fibromyalgia sufferers unfairly and are requesting people contact them with their experiences!

Category: Latest news

Created: Tuesday, 12 January 2016 13:28

PIP claimants are being forced to travel long distances to unfamiliar places in order to have a face-to-face medical assessment, due to a shortage of assessors and assessment centres and a computerised booking system which ignores claimants needs.

We’re asking Benefits and Work readers to help out by telling us about the PIP assessment centre you attended if you have already had a medical. That way new claimants can be better prepared for attending their medical, if they are unable to get it changed to somewhere they know. - http://www.fmauk.org/information- packs-mainmenu-58/benefits-articles-1

The inconsistencies of the DWP over Fibromyalgia being a disability has run for years … ask them outright and they state that it is. In a support group I attended but keep forgetting to attend any other for the last ten months or more I was the only one with a walking stick. Lol.

In the group there were teachers that did not realise it was a disability and was having trouble coping with her teaching job. She was advised, while I sat there, by another group member who worked for a local council, possibly Enfield, that they local authority and school need to cut dowen her days so that she could cope. She was often reduced to tears over her condition.

She showed absolute surprise it was classed as a disability and when she asked the lady advising her if she was sure everyone in the room said simultaneously “Ooh yeah, it is!”

Hi Lisa, i have fibro and i am getting DLA it took me a while to get it, i was refused untill i was asked to go to a medical by the DHSS and asked for a home visit, after this visit i re- aplied and had no problem getting it.

Some people get turned down more than 3 times but just keep appealing the eventually you should get DLA.

All of the best, keep your chin up

CHORLEY 

Here is an example of someone getting DLA for it, though I was refused despite having a rare form that affects my feet along with other things.

I applied once for DLA with two spine curvetures, a hernia, fibromyalgia and irritable bowel syndrome got turned down have not bothered since, Then my medical for being on ESA consisted off wriggle my fingers and toes gently then raise both hands to touch my shoulders slowly and gently , bend forward three inches slowly and gently, lay down on a couch provided and lift my foot 3 inches off the couch ... I was not let to be able to speak each time I tried to speak I was loudly spoken over I knew within the first very few minutes this medical is a complete fix

There a lot of stories like that one .. a lot.

Basically the DWP and government want to save money and they are bing opportunists and if your being opportunists to that extent and the experiences are as different from person to person with the same condition then they are not being fair and obviously not medical specialists.

Surely there is a law for pretending to be medical specialists?

If I bought a house, spent money making it look like a GP Surgery and advertised as a private General Practitioner or even a specialist … without qualifications of any kind I am damn sure I would go to prison at some point.

Yet time and time again with plenty of medical professionals around the sufferers to get things from you have to be and be assessed by people without compassion and without medical knowledge or even an understanding of conditions. Be that understanding cold and clinical or warm and compassionate.

Hmm it seems that according to the Fibromyalgia Action's website there is going to be a documentary about people with Fibromyalgia which is a high profile programme looking at disability benefits and the impact the changes are having on people's lives?

http://www.fmauk.org/latest-news-mainmenu-2/articles-1/46-media-coverage/1066-urgent-media-opportunity

On the following Fibromyalgia Action webpage are a few instances of people with Fibromyalgia and even one celebrity model, Jo Guest, who speaks about the illness ruining her life and career.

I will have to look out for that documentary about Fibromyalgia and see if I can get someone to tape it for me? Maybe it will appear on YouTube? Ooh that is an idea?! I can search for Fibromyalgia on YouTube!

If your treating people that have the same illness differently then you are discriminating against them in another way. It is as simple as that. Whether this is race or class or even unemployed people it does not matter. A Single Honours Degree in Applied Computing and turning down a PhD working in the world of medicine does not win you any brownie points!

Now I have mentioned my memory loss, known as Fibrofog, and I have stated very clearly and repeatedly that I fully understand the frustration people get with Alzheimer's Disease even the early stages. Your loss of memory causes stress, irritation and anger.

In the video above one woman states that she was experiencing memory loss to the point that she thought and was scared that she had Alzheimer's.

It also states that do not understand it and there is NO CURE for it, as I explained to a warm and lovely lady at the DWP who phoned up someone with memory problems asking them why they did not do something. Hence I get angry and I did with her. She denied it when I said they clearly had no knowledge of Fibromyalgia at all and were not capable nor qualified to assess anyone with this debilitating condition.

This is why I have never been shy about showing my frustrations and anger because you do feel this all the time and you simply and scientifically cannot turn it off. We really wished we could.

How about one woman that starts of in tears over the constant pain? Well look at this shorter video on Fibromyalgia Syndrome …

Umm … WOW!

The lady crying talks about not being able to handle heat and feels hot to the point of burning all the time. She also states that she has two air conditioners, something I have stated several times I would die for, but still has trouble.

That is the first time I have heard anyone mention trouble with being hot like me!

Another one mentions Restless Legs Syndrome which I have along with the much rarer Restless Arms Syndrome. I think these are basically the same thing and if you are bad then you get it in the arms as well as the legs. I would like to bet that only arms affected is extremely rare or even non-existent?

One states that people with Fibromyalgia require a lot of care and attention … yeah and I live on my own! I have stated so many times on my blogs and to Doctors how hard it is living on my own.

The very short version but there can be up to 200 odd symptoms ... hard to believe andd was for me but when I went through a checklist of every possible FMS symptom I had close to 120, though when Guy's Hospital diagnosed it they disocvered my right knee was a separate and physical issue. Go figure!

GOT MY MIND SET ON YOU

I had an email from an organisation I forgot I contacted. In fact it was sent because they had a legal department and that was why I sent one.

It was the organisation, charity, for people with mental health problems called Mind.

They mentioned about advocacy as well as following the correct complaints procedure, which I already have.

Anyway I sent a reply just to see if I can get any titbits out of them?

EMAIL..

Dear Charlotte

Thank you for your email.

I have previously attempted legal representation but curiously there is no legal aid for it.

I find this extremely disturbing and now realise this was part of a greater plan to do the things I first suspected and then proved.

Unfortunately they had not factored me into their equations.

I made a formal complaint and still kept the fact I had Blog with all documentation and recorded proof hidden. I received two reports that were basically lies as this was as I planned.

I then made my blog aware to my previous GP Surgery while NOT informing the NHS. I received a phone call from a woman claiming to be the NHS and stated she was doing a survey on the complaints procedure. When she was told that the reports were full of lies she started that she would handle the complaint again via a different department. She claimed she would send me an email telling me of her intentions.

However after two weeks the email failed to arrive so I emailed NHS England who rang me the next day. Just like the idiot GP he spoke to me as if I was nuts and stated it was not the NHS. When I pointed out that it was and someone called me he insisted that it was not them and must have been the PHSO.

The PHSO were aware of the complaint and already possessed much of the story along with the blog address. But as I later found out they had sent me an email with a form that I needed to sign before they can become actively involved. I also pointed out that it is NOT just these two Doctors but the dozen Doctors in total and that this is controlled by someone in government.

Oddly when I filled in the form for the PHSO I came across a question I Italy was not expecting...

(The question deleted from this pasting)

This threw me as I have not only been screwed by the NHS. If you check my blog thoroughly, which none of the over confident public services and organisations have done thus far except maybe the PHSO, you will see the Police (two forces), Local Councils (4 and counting), MI5, GCHQ, HMRC, DWP, Atos, Argos, Very Catalogue and others along with every ombudsman you can imagine!

My point being that when I started my blog over 18 months ago I literally stated what I had done before for 15 years and no one did anything. I then stated that for the next two years I would then do it all over again and I would record it and post it as I went! I stated that just as before that even with the evidence no one would do anything but put their hands out for money that does not exist?!

Up until that question from the PHSO I have proceed myself correct all along for both past and the next 2 years I was to attempt everything I could.

That question about me (deleted) had thrown me in all honesty. Fit someone in my position I think it is quite an unfair question to ask people unless they fully intend to make good on their innuendoes?!

I would imagine if others had been asked that only to get nowhere this would therefore mean the question was a very cruel one to ask.

I mean to say that in my case the period I have had my health condition is over 15 years and possibly slightly over twenty?! How do you put a (deleted) on that?!

Never once did I consider the possibility of (deleted) actually ever happening. That, after all, was the point of the blog was that nothing ever happened!

So that is where I am at currently and would greatly appreciate your opinion.

Also some years ago I wrote to the Disability Law Service but have not since then. Do they still exist and are they any good? I approached a solicitor who was supposed to special in law for people with Fibromyalgia and yet he declined to help. He quoted no legal aid and, rather rudely assuming, that I could not afford the case! So I felt a bit annoyed about that and seemed like false advertising as he must only work on insurance payouts, but he did not state this on the webpage, and/or very rich people?! Because anyone with Fibromyalgia would not have worked and saved up enough money to fund a case based on his insinuations!

That was Brian Barr Solicitors.

If I did not provide my blog address and you wish to view it based on anything I have stated in this email it is...

asaintcalledallnights.blogspot.com

It seems I have managed to help a number of people and do seem to be building up a lot of visitors which recently tipped over 100,000 in all. This will increase from April to October and a lot faster than it did previously.

In the event you can use my endeavours and blog to help others then please feel free.

Thank you for your time and apologies about the length of it but, well it's over twenty years and I am sure you can appreciate the complexities of it all.

I find it odd that I am achieving far more than any solicitor I have contacted is capable of and have not finished yet.

Yours sincerely

Martin Haswell BSc

GP DECLARES CURE FOR ALL MENTAL ILLS

This is really going to be a breakthrough?!

Someone who is kind of part of my family went to their Doctor and said they were feeling depressed. As it turns out the Doctor had a miraculous new cure that she then divulged to him and it will change the worlds and save billions of pounds?!

The treatment is as follows and as directed to do by the GP, in North London yet again...

..."When you first look at yourself in the mirror in the morning...SMILE!"

I kid you not! What a patronising bitch?! She is damn lucky she did not day that to me I would have exploded in a tirade of abuse and but rested until she was struck off!

What patronising and condescending attitudes they have, what do they think they are a higher firm of life as will as intelligence?!

It is an absolute disgrace that people can be treated and lied to in this way and I will make sure that 2013 will NEVER be forgotten by ANYONE prepared to treat people like crap!

When you compare this to the attitude to everyone working and those but working which includes disabled people it is starting to show signs of similarities with concentration camps?!

That is how I felt when i was lied to about the unsound scan telling me blatantly lying that I don't have s hernia that will kill me that I artwork do have and he knew it too!

My landlord owns his own building firm and I bumped into him today. When i told him what had happened regarding the lying Doctor and that I had also recorded it he reacted with shock. I think he has lost count of the number of times I have shocked him and her then said "It's bollocks ain't it?!" Lol.