A DAY OF HOPE

Well I call it a day of help but I have this terrible nagging in the back of my mind that continues to be negative.

Today is the day when things could change back around in my favour and I hope it will do so because it could, should, mean the end of the anxiety. Except for that nagging in the back of my mind I have had the last couple of weeks.

It could turn out to be a blessing in the oddest of disguises.

If things go very well and they would have to go very well, it should give me a massive boost that should propel me. I am already thinking that if my feelings get a lot better from a good day then hopefully I will be back on my drive to get out with my two new cameras to get lots of content for my other blogs and my YouTube channel.

Except I see raindrops for the first time in weeks and the weather seem to say we were going to have a couple of rainy days. Still, I am thankful for the cooler temperatures as it was only compounding everything. But it might take a couple of days for the thoughts and feelings to get back to normal anyway and for the anxiety to go completely, I just do not know.

Of course this is all replying on the fact that I get the first actual help after asking for the umpteenth time and over a ten year period.

I have lived here for 9 years and for a couple of years before I lived here I had asked for help for similar things. I would wager heavily that I have made over 200 approaches for help in thirteen of fourteen years and there have been times even before that I have requested help.

Going on ratios when it comes to receiving help from anyone I have had zero percent and when I have helped myself it has been a poor success rate of probably less than fifty percent, though in the recent past this has improved somewhat.

There ave been five legal challenges against me and every one of them has failed so you would think that this time I should be full of confidence? But I wasn't, got struck by the dreaded anxiety and no one was more surprised than I was.

One way or another I need to actually do something about this condition of mine because it is clear it is not going to go away. Mind you that could all become academic after next month depending on the outcome of the hospital thing. I might not have long to live or might be epileptic and even if it turns out to be the latter it could stop my cycling. That would not be good to live with, let me tell you as I basically survive on cycling during the warmer months when I cannot travel by bus or train.

Ooh my first cup of tea in many days.

Just been looking up what other causes could be behind my seizure and blackouts and I had seen various types I had never heard of and a couple of no-epileptic seizures called PNES and NEAD where the 'NE' stands for Non-Epileptic.

I do no know about either of these but my money is on me NOT being epileptic because of when it is tat they occur. It is always from rising and until lately where I was just standing upright from leaning forward a few times have always been from crouching or a sitting position and standing up. It is not spontaneous or random. Almost always occurs from around midday until around 5pm for he most concentrated occurrences. Indeed this is why the GP thought it was Postural Hypotension but they were so strong and I was on the verge of collapsing so many times that I had my doubts about that. Though I never thought of looking up if Postural Hypotension can actually do that ..

Te worry for me is that the fatigue and lack of drive had been kicking in long before the trouble with the DWP started brewing. It was something I had planned to bring up with the GP, despite him having only just become a GP, when the anxiety struck.

I have my list of 7, or might be 8 now, reports printed out and stapled together where they need to be sitting beside me.

I will take all of the reports with me and see what they are interested in keeping a hold of. The reports are for a variety of people I will be seeing over the next four to six weeks. As stated before my memory has been bad a very long time and slowly getting worse. SO I cannot always think of things which as probably screwed up a lot of meetings and appointments if I am honest. It has been amazing how many people do not take this into account. Including friends.

Damn! I just remembered my old phone. I forgot to charge it last night, remembered this morning and then forgot about it again, really that is how it goes, and after being awake for over 3 hours remembered it about 20 minutes ago and then forgot again. I just turned to look at where it is meant to be charging and was not there. So the whole time I have been typing this out, every ten or twenty minutes or so, I had not remembered it once. I forgot to charge my new phone too but that takes only about 20 minutes to charge fully, often less as it is still always 50% to 90% charged from the day before. Without using, my old Moto G runs out almost completely, or does in the middle of the night, and seems to take 2 to 3 hours of charging to get to full. Still I only need enough battery power for the phone to stay in standby for around 5 hours. Or in other words, until I get home.

Really it is mainly because of one phone-call that never seems to come though others might not have my new number as I may ave forgotten to give everyone it. Oh like my landlord! I must do that!

Having serious issues with my 'H' key among others. Keeps missing keystrokes and I seem to get letters in spellings the wrong way around. Been happening for some months and is somewhat … worrying what with the other symptoms pointing towards a possible brain tumour, lol. But that is something that will be looked at in two weeks time. Well .. a little less than two weeks and I have a report for that! Lol.

Will NEVER buy another keyboard from PC World.

Sometimes when you have too much time to kill before an important meeting or appointment in can be a pain in the arse. Been debating whether to go to it by bike or bus but I do not want the bike getting stolen, it is a somewhat higher crime area than that where in live by several levels, lol. I thought about visiting some friends beforehand but would be too much. I have been on the bike for three days solid so hopefully the being on foot should not be too bad. Fingers crossed.

I think that may what has been diminishing my drive, at least partly? Lately even the shorter distances I do ave seemed like a ten mile hike for each and every one of them. I think about shopping and then think about the journey to my nearest Sainsburys and I think 'Ugh!' It is why I got my old bike out as I am simply not doing things and going places, not that I have a lot to do and I stopped window shopping 6 months ago when a line of communication became cut off. As I have said many times, weather been crap and I ave been .. apprehensive of even doing my work at closer distances since that full on seizure. The thought of damaging the new cameras does not help either! I am hoping for a pill that will result from the hospital appointment that I can take around midday which will stop any blackouts or seizures from occurring? I hope and pray.

Of all the lists of things one would have to hope for and worry about mine are .. starving to death, being made homeless, becoming unable to walk and dying from a brain tumour in that order. Though if the first three start to look likely or even become fact the last would be a blessing.

Hmm August and September this year, 2016, already look to be the most two bizarre consecutive months of my entire life?!

If you had not worked it out, or more likely had it long before you read this, I have a meeting with Citizen's Advice today. Whether this will lead to any more meetings I do not know but I also ave a Neurology appointment in a couple of weeks. Then another meeting of Minds in early September and whether anything else, oh crap local council .. must do that tomorrow, will occur I do not know.

PUBLIC INVESTIGA-TIONSSSS

Sorry tried to make the headline sound like a line from a Dire Straits classic track, lol.

Maybe I should have added a 'BOINNNNNG!' like a string of en electric guitar being struck?

Every time I turn around it seems like another public office is being investigated.

I was at a friend's house and I noticed one of those workplace pension adds with monster in the technicolour dreamcoat fur and the voice stating that employers are ignoring it?

YAH THINK?!?!

How long since that ad first run? Still having issues?

Still having issues with the welfare system?

Everything has either had an issue, had several issues, has ongoing issues and you damn well know that over the next 6 months there will likely be half a dozen more areas having issues?

This was there idea of doing the right thing, the right way and us all being in it together? funny how they always get their pay-offs, pensions and book deals and published?

Funny how I can't?

They have proved their incompetence over and over again while I get the predictions right 98% of the time and they will get published while I continue to wait to do so?

Someone said to me recently that the world was upside down, though he meant the UK really ... oh and now that I think of it he meant the USA too. Well there are plenty of examples and here is one too.

They will get their books published and there will be a queue of morons lining up to buy them and the real idiots will want signed books by them?! Yeesh!

If I get bad news from neurology next month I might never get to publish my books?! LMAO! Or they make me homeless and I never get them published which is probably why they are doing just that?

Now I had already heard that the UN ... or EU, I cannot recall, were investigating the DWP over the way they treat disabled people ... something one naive moron seem to be completely unaware of and who thought that the DWP sympathise with disabled people and I should go to an assessment I had already missed. Ahem.

Anyway the Disability Rights people emailed me back and gave me some interesting information and a link to one of their pages showing that the PIPs department were being investigated! By an Independent Review team or something or other, lol.

Well hang on a minute ... what about the Independent Case Examiners, or ICE, I have contacted numerous times that always come out with either some lame excuse or just bullshit and lies not to do anything? If this Independent Review finds the DWP to be at fault the ICE team should be disbanded forthwith.

Ooh I now have noted that the email to the 'Independent Review' is like ICE and going through the DWP servers?! Doesn't .. sound .. so ... independent.

We shall see.

Here is the Disability Rights page about the review ....

http://www.disabilityrightsuk.org/news/2016/july/pip-second-independent-review-call-evidence

Here is the review page ...

https://www.gov.uk/government/consultations/personal-independence-payment-pip-assessment-second-independent-review-call-for-evidence

I am hoping it is just not another misuse and waste of tax payers money to make the tax payers think they are checking everything is OK when they damn well know it is not?!

I have emailed that ... Independent Review team and I have given them my blog details and told them a few things about PIP, DLA (cancelled for 7 years) and ESA.

I even told them I knew that Doctors, GPs and hospitals were lying and falsifying test results to help the DWP. I have the concrete proof they lied several times and have a tape of a specialist at a hospital admitting he falsified an ultrasound test result I had.

Going from tat proof to 'they do it for the DWP' goes from a big stretch to a pigeon step with my proof. I got one half of the evidence I predicted ... do I really need to jump through hoops to get the other half? Would be something of a very tall task, would you not think?

Maybe someone ... else is in a better position to find this out? Would you not say?

With no money, help or support and now them trying to make me homeless again ... do you not think that with over 100GB of evidence and rising I have done enough?

LMAO.

Bored, now unfortunately got back into smoking ... another thing the DWP caused along with the loss of the use of my legs.

Hmm ... if you did not know from earlier ... I got an anxiety attack thaht was so strong my thigh muscles simply shut down and refused to respond. I did not know this at the time, of course, and for several hours I wondered what in the world was happening to me and this made the anxiety worse which made the legs worse

I then found out that Fibromyalgia can casue anxiety so bad it causes first tingling and the legs going and can actually turn out to be permanent. Marvellous.

The emergency paramedic that shot to my house in a flash did not know this and nor did my GP and once again it was I that discovered the root cause.

I just hope ... well sort of hope that next month I am wrong about the brain tumour. Unfortunately my track record is getting things right a hell of a lot so does not look good. I am pretty positive I am not epileptic do the seizures, blackouts and other symptoms point towards something more ... final.

And if I am going down ... they are coming with me!

LOL!

A MORBID FUTURE

Have had some anxiety today and some restlessness and with nothing to do, other than go out and buy tobacco which I am trying hard not to do! Not as bad as previous but unwanted and worrying all the same.

I was writing a post about something I found a distraction while I had some other serious issues going on.

I bet you would find that no matter just how disabled someone is, except the most extreme cases, that they get things done and then sit around for days waiting for someone else to do something?

My own present problem is the fact that I have no confidence in something but that this 'no confidence' thing is actually quite widespread in many things. Whenever anyone thinks anything about any given situation it depends on a number of things.

• The sincerity of those they are dealing with
• What they have experienced before
• What they are told or assure

These are three very basic principles but three principles that I for one have noticed very few take into account.

The feelings of both panic and anxiety stem from fear and yet when they occur not many people seem to be well seated to be able to deal with them for you. Their attitudes normally revolve around some self belief or even over confidence in their own abilities. Yet these are never put across to the people that need help.

On the merry-go-round I am on this time I have noticed this and I have realised that what people need are assurances or examples that show success to show that the worst case scenario is not very likely. Of course the reasons why they are not likely are key here.

This becomes a far greater drag when you have a number of other things you have to contend with each and every day and even worse when there are possible blips on the horizon.

• Two health blips on the horizon, each with its own possibility of being terminal
• Degenerative health blips aplenty occurring from monthly to daily
• The feeling of impending doom of being without a home before long

I had one of my brothers find out yesterday what has been going on with me for a couple of weeks now and he said something strange. He works running a Ford car showroom but said ..

“I don't know what they are playing it but I keep hearing they have been kicking people off for six weeks then taking them back on?!”

I thought that was strange as I was not aware he knew anyone that was claiming any benefits and I only know one other person and that as only happened to him of late. He was a social worker for Camden Council for 15 years then worked for an antique watch shop in Farringdon Road for a number of years until they had to let him go due to the recession.

There is a local sufferer of mental health who has a habit of latching on to me, there is a community of them in a building nearby, but you can hardly ask him about these things.

I have grown to dislike my life and I do not like sitting around doing nothing which is why I blog on so many blogs when I am at home and out with a couple of cameras on my bike when I can and weather permits. Not a great deal of late that is for sure.

I always feel like I should be going out and doing something. I do ave an overactive mind that always wants to be doing something too.

But after the recent singling out of me by the DWP for the umpteenth time I now feel like there are several things I should be getting out the house and doing every single day. When your not doing this or you simply do not know what it is or what more you can do it makes things somewhat … anxious.

But no one seems to get that.

For all these help groups and charities no one seems to understand these three basic things I have listed and no one caters or plans for it. I would imagine they have all these procedures they follow and all these protocols and I wonder if actually dealing with the victims problems comes into these steps at all?

It may be that they simply cannot? Though I doubt this would be the case in every instance and surely if there are contributing factors this makes a difference to it all?

Well I have several contributing factors and I have not had the slightest evidence that anything is different so far.

I spend my days wondering when the day will come when it does?

I have been in this situation roughly around two weeks, since I first approached people for help and advice.

Granted I had been in this situation several times before and all shown in the archives of this blog but they all went very differently. I have no idea why this time and at the worst time it got so extreme.

It may well be that this fizzles out to nothing now but that does not help me right now and I have literally a few days left before I find out. Though I got a text message on a very old phone number not used for years that a decision is made on the 20^th July, so three days. But when this decision gets to me I do not know. I guess I can expect to be told by the weekend? But my very last payment of that benefit occurs the day after the decision and therefore will be a gap before seeing the Citizen's Advice again.

Now I have contacted several others and a couple of these are meant to have advocates and one said to have a legal team or people. I have heard nothing yet but maybe I might get to meet one of them this week, with one in particular I know I can get to.

The rest of the time you should be off doing your stuff and enjoying other stuff. But you cannot and it is like having days being stolen from you. Time being stolen. In essence that is what it is.

As everyone knows you need time to do anything and in this digital world where there are no hoards of bloggers because everyone has a smartphone in their pocket you need more time than ever before to get anything achieved. Or even get up to a level that becomes noticeable.

When I say 'noticeable' I really mean that enough people are aware of you that shows that your heading in a direction … a good direction or the right direction.

Another annoying and rather unwanted distraction is this weird irritation I have around my eye as it has been playing up more and more the last few months.

It should be some replied that I finally have a hospital appointment about it after mentioning it to several GP's over the last 4 years or so. Would be just my luck, perhaps a gift, that it would turn out to be a tumour or growth of some kind that needs an operation. Yeah that being a gift does sound strange but when everything has been as difficult as it has been at times you get fed up with trying to find or fight a way out of it. Especially when it is down to finding other people to tell you what to do, help or even act for you and they are few and far between.

Well almost non-existent to be honest and if the Citizen's Advice comes to nothing then it would have been completely non-existent.

There are times when I think that despite my blogs it would take nothing short of my death for things to change?

Maybe that is just how it is destined to be? Who knows?

Maybe by attempt to help others on-line was always going to turn into my demise and even death on-line to wake people up? To make people care about others more?

To me it always comes back around to everything being negative and impending doom to finding a way to turn it back around the being positive.

The urge is to dig into the skin above the eye socket as well as put pressure into and around the eye socket because it feels like there is something there, like pressure, that needs release. This is my right eye socket, or from the view of someone else, my left eye.

A quick search and something called a Lipoma seems to fit the description … only that with Lipomas there is no mention of an irritation or sensation with other people noticing the lump being literally the only symptom. It basically is a build up of fatty tissues and they do noot seem to know why it happens.

Almost oddly perfect in this is the fact that I also seem to have an issue with my throat on its right side and always had an issue with my right ear, the latter for a very, very long time.

Also weird is that many of my long list of symptoms are either located on my right side or appeared on my right side before later appearing on my left to become bi-lateral, meaning occurs on both sides of the body. Both feet or both legs etc.

So I have an irritation or lump on my forehead and there is such a thing as Forehead Cancer, a type of skin cancer. I feel like I also have a lump inside my eye socket too, it feels like the two things are connected but may turn out not to be.

I am also to have a colonoscopy at some point due to recurring trapped wind type pains that are pretty severe.

But I was socked to find out something extra about brain tumours. Now you may or may not know that I have been having not just a return of my black outs but that these have been rampant and I have experienced a full on seizure, blacking out to the point of unconsciousness and remaining that way for ten minutes, according to Mr and Mrs Harfcell who just froze 100 metres away from me and just watched. The two harfs make a hole in this instance, lol.

So where tumours in the head or brain are concerned it already does not look now sound that good so what if I was to state that I have discovered by a surgeon on YouTube, that brain tumours can cause abdominal pain?!

So now it really does not look good, right?

Well you have to face these possibilities and oddly if you try to talk to anyone about this they tell you you are being morbid and not to think or talk like that. Like not talking about it cures the cancer if you have it!

I know people react like this so I do not even bother to talk like this. They know I have the upcoming neurology appointment and that is about it.

I would imagine that some would panic about losing me or me just not being around any longer as I am a go to person when things get really bad, tricky or something complicated needs solving or an understanding or explanation given in layman's terms.

That first appointment is in August and I do not know what will happen and nor do I even know if I will have a home around the time I have the appointment. It is likely that I will but just about barely or barely hanging onto it via the help of some other group, body or organisation?

Fingers and toes well and truly crossed here but if I am destined to be kicked out of my home and lose all the tools and gadgets I have worked so hard to acquire to help me and my blogs then a death sentence via cancer might just be more humane than living through all that yet again?

I may even turn out to be epileptic?

Imagine though for a moment . Needing surgery and either being homeless at te time or about to be? All this because they failed to diagnose a condition for over a decade and then refuse to give any support because the name is not as widely known as something like 'diabetes'?

I have said this before … say the 'C' word, diabetes or even epilepsy and everyone is like 'oooh poor thing … let us help' but say something rare or they have not heard of and you get nothing more tan a shrug of the shoulders. Sometimes metaphorically speaking too where the attitude is nothing more than a shrug of the shoulders.

It is almost like a 'get out of jail free card' whereby they do not have to worry or more accurately seen to worry because no one knows what it is or very few people know of the condition's existence?

Now I imagine that this is the only concern of just about every charity out there that specifies in one condition or other? Be it heart problems and a long list of other things right around to my own condition of Fibromyalgia?

Ask for money to have a website and write the odd letter to your government asking them to take more notice of said condition? Other than that you contact them for help, they tell you they cannot and then explain how to spot your condition? A bit annoying when you have spoken to one of the top people in the country on your condition and they did not even know the name of the only drugs that deals with the very core of the problem. Yup .. annoying!

Now with this digital age and with the Internet in almost everyone's pocket if not at home it would be very easy for a list of the world's biggest companies to spend just a couple of weeks getting everyone aware of a list of debilitating conditions. That is if they did not mind giving up primary advertising space that normally goes at a premium price similar to a telephone number?

Google and Apple are to that you could consider capable of doing this with the number of users they have not just an iny given country but across the world.

So how about on a particular web-page not having some silly logo or some reference to something or the other you have a debilitating condition for a few days or weeks?

'Condition name and here is what it does!'

Something like that. If both companies did this they would get almost all people on Earth as they normally have an Android phone or an Apple phone. Throw in the other of this particular evil trinity, of Microsoft and you have just about everyone with maybe a tiny percentage that do not have smartphones, tablet PCs or computers.

Do not worry as they are bound to hear about the condition advertised from someone they know that does have a smartphone or PC.

While I have been typing this I have been listening to a brave and poor young girl that had to have treatment on a brain tumour.

The poor girl has an anxiety disorder too!

It is eight months old and I hope she pulled through it and actually scared to look for more videos in case she did not!

This is the second one I was playing as I reached the end of this post ..

FIT FOR A KING

I am in Enfield Town library and I just had one off my black out moments, only this time it was worryingly strong.

Now there is a very peculiar oddity about this occasion and that is the reason why I ended yo where I did.

I had not initially left the house to visit the library but an odd set of circumstances led me there. I thought maybe I would take a gander in a medical dictionary at Fibromyalgia?

Now what was the funny coincidence? I was quite unusually on my knees and placing back a copy of Blacks Medical Dictionary when I started to feel that all too familiar tingly and warm feeling. Yes you read that right I was putting back a bloody medical dictionary! Lol.

Note this one continued beyond the blurry vision to complete black out which is very rare. Luckily I was on my knees and leaning against the reference section having just placed the book back in place. Afterwards I am usually a little fuzzy and out off it and the stronger it turns out to be the more out if it I am.

The worst every occurrence of this was a very long time ago and was unconscious round a friends place for thirty minutes. As I awoke I could feel convulsions in my legs body and chest and was, don't laugh, on the floor of his toilet with my trousers round my ankles, lol. O was convinced at the time this was a Grand Mal Seizure and it could be argued that the others were all mild seizures to one degree or another.

Only these seizures have a golden rule add they only occur when I'm crouching or sitting and then stand up. Well normally. But not today.

As for the Fibromyalgia read up Blacks Medical Dictionary, yes it does seem even more oddly suited to Mr symptoms than my previous estimations. Even adding my sleep problems and unexplainable headaches into the mix.

There is on last peculiarity too and this one has blown me away. To start with I should not have been able to get as far add the library today! After an easy week I had a couple of bad days and had decided that the Amitriptyline was not having an affect. Or do I thought.

Today something bizarre was happening in that after awhile I noticed the flat off my heels felt different. There eds nor much in the way of the usual difficulties and at times I found my feet felt as close to normal as they had done since the first pains thirteen years ago?! I was somewhat dumbfounded by this to say the least. I thought perhaps the Amitriptyline WAS avidly doing something?!

In the care and management section under Fibromyalgia what does it state? Only two drugs have had any effect on Fibromyalgia and one of those is Amitriptyline!! The other was called Serotonine or something similar obviously to do with the serotonin levels in the brain. So I'm guessing it was someone I knew that had been prescribed this drug and not me add I would have certainly noted any effect on my feet.

A shame then that neither this drug nor Tramadol is doing anything about my back pain!! Or my shoulder!

Lmao!