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!

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