Pain is a pain in the everything.

Originally, I was prescribed Tramadol four times a day. I found that Tramadol keeps me awake though, so I reduced this dose to three times a day. This of course meant that I needed a different pain killer at night. I was prescribed Gabapentin by my specialist, last year.

It worked well to start with, but over the year it's diminished. Rather than increase the dose I requested, last week, to change to a more commonly used medication; Amitryptiline. He had no problem with this, but along with everything else he forgot to do, he forgot to write the prescription for this. (I hasten to add that this was NOT Dr Patel at the George Eliot). I left a note for my GP on the way home from the specialist appointment, telling him that I now had no pain medication for night-time, asking him if he could write the prescription for Amitryptiline for me. It's a commonly used drug, one which he's prescribed for me before under different circumstances.

So, I expected to spend the weekend without pain medication. Come Monday though, there was no prescription for me, and of course I can't get an appointment with, or speak with, my GP about it for weeks.

At the same time, of course, my Tramadol is running low. So I put in a request for a repeat of Tramadol on Monday, too. For some reason it seems particularly difficult to get a repeat of Tramadol. I don't know why it's so controversial. I've been assured that it isn't the cost of the drug. So, because I know it takes ages for the Tramadol prescription to come through, I've reduced the dose of Tramadol, to twice a day.

So, for a week now, I've been on less than half the pain medication my body has become accustomed to. It's very easy to say that I'm not addicted to these pain medications. I'm not ... not specifically addicted to Tramadol and Gabapentin, anyway. However, my body now requires pain relief of some sort. Last time something similar happened, I sought relief from Codeine Plus, or something like that, which helped a little. I only have Ibuprofen available at the moment though, which doesn't seem to do much at all.

So, I AM IN PAIN. I have a stabbing pain straight through my head (withdrawal no doubt). My entire body feels horrible. Obviously, the pain that the medications help with has come back with a vengeance. But, my body feels like it's starving, too, an experience I have never desired to repeat. Standing up feels uncomfortable, as if I'm unable to breath. Yet my breathing is unaffected.

I can't remain in one position for more than a few minutes, but I cannot explain why. Nothing feels right. This is the hypermobility. Before taking pain medication I was used to this feeling, and hadn't even realised I was in such significant discomfort. Every joint in my body feels ... loose. I can feel each tiny movement, some feel like they're grating, some feel like they're swimming. Subluxations have become a lot more common throughout this period of pain and discomfort.

And of course, with pain and discomfort comes the lack of sleep.

I'm so tired of fighting to live a normal life. Not just striving, but fighting the NHS and DWP. I have to argue my case over and over and over again, to get the simplest of things. This medication change is just one example, among many. I do at least have a GP who is working with me now, despite it feeling as if he's doing it so slowly. I've been ill since 2002: This is the first time someone is taking me seriously.

Let's judge the disabled!

Honestly, I don't really know why I'm writing this post. I feel like I need to warn people I suppose, that's all.

A few months ago I contacted DIAL about my DLA application. I had just been turned down when I applied myself, and had absolutely no income.

There is a huge stigmatism around benefits in the UK at the moment. As such a lot of genuinely sick and disabled people are being declined benefits that they genuinely need. The media has done a very good job of turning every day normal people against the sick and disabled. People who would normally help someone they actually see in distress are begrudging those people the tiny amount of money that they need for simple things like food. People are starving, food banks are at breaking point. Anyway ...

I am disabled. I've spent years trying to deny it to myself, but in the last few years I've been forced to admit it. Even my family, who's had their head in the sand over the fact that I'm ill, has started recognising that I have these problems. I'm disabled!

I have M.E. and Fibromylagia. I am hypermobile and have recurring back problems. I have PSTD and suffer with severe anxiety attacks. I am in constant pain, which is only partly relieved by very strong pain killers. The severity fluctuates; on my best days I can potter about the house a bit, maybe even go for a walk. On my worst days I have to knock myself out for the day to avoid the agony. I suffer with fatigue and exhaustion the like of which you can only imagine if you've actually experienced it yourself. Walking is painful. Remaining in any position for more than 15 minutes is painful. The fatigue means I struggle to meet any expectations placed on me (doctor's appointments, shopping trips, taking medication at designated times, etc). It means that I frequently have problems performing simple tasks or formulating sentences. I'm often mistaken for being drunk. (I don't drink).

Being disabled is hard. Even if you're not disabled, having a long term illness is hard. You have doctor's and specialists whom you try to keep happy. It's human nature to wear a mask, leading people to believe that things are better than they are. That doesn't apply any less to sick or disabled people. If anything it applies more.

So, you spend most of your time trying to put a positive twist on all these difficulties ... and then you have to fill in forms describing how bad things are. It is very hard to make such a huge mental u-turn. You have to scrutinise every little thing you do. For me it includes measuring how far I walk between each tick - because every tick can cause me to fall when I don't have my stick. Before filling in the form I didn't realise how frequently I was actually ticking! You end up learning that you're far more disabled than you thought you were. Really, most of us are actually in denial until we go through this process properly. As such it's very demoralising, and often causes distress and depression.

You can imagine how easy it is for those who wish to commit benefit fraud, can't you. They don't have any of these difficulties to face, just a little research into a condition, tick a few boxes, tell a few lies.

So, as I was saying, DIAL helped me with my recent DLA application. Honestly, with everything else going on in my life at the moment I'd totally forgotten about it (people dying, and my mother having strokes). I was resting in bed, my body is currently inflamed with a Fibro flare, which I have to rest off. At approximately 1pm I received a text from my boyfriend telling me that he'd had a call from someone regarding my DLA application. She told him that she'd been trying to call me, but I wasn't returning her calls. Funny thing: I've not had any missed calls! He took her details and texted them to me.

I phoned her back. Obviously she has an advantage over me, in that she knew where she was phoning from and why she was phoning, both pieces of information she refused to give me. Understandably she needed to ask me security information. Having dealt with the DWP over the last few years, both for myself and for others I'm way too familiar with how this works. She did not stick to protocol. For example, she only asked me my date of birth. Part of that protocol is to ask you which other benefits you're on - anyone trying to fake another person's ID is likely to have checked out their date of birth, address, all the obvious things; asking what benefits someone is on is not obvious, so it's an easy way to catch people out. She didn't ask this. Instead she said to me "You're receiving Carer's Allowance, aren't you!".

When she asked if I was receiving Carer's Allowance, obviously I answered that I am, because I am. She then asked me how. I did not understand this question. She went on to elaborate that my form states that I have zero mobility, and asked how I manage to care for someone if this is the case. She did not give me time to answer. Instead insisting "Do you have zero mobility or not?" Again, she did not give me time to answer, instead moving on to asking me about wheelchairs. She told me that I use a wheelchair when I go out, but that my partner cannot push it, so told me that I must push it myself, despite reading off the form to me quoting a part where it says that I can not self propel.

She kept going like this, not allowing me to get a word in edgeways, putting a twist on everything in a snide smug tone. I ended up raising my voice over her to try and communicate my actual answers to her questions. Obviously, I do not want her twisted version of things going on my record. I do not want to be turned down for DLA again, unless it's legitimately. Plus, I do not want her lies on my record as they will be referred to for future assessments. It's because of a medical assessor lying on an ESA assessment a few years ago that I have these problems to start with.

She told me that my form stated that I have expensive night time needs. I didn't and still do not know what this means. I tried to ask her, but she kept going. By this point I was crying and shaking, so I asked her to talk to my support worker instead of myself. She told me that she doesn't have to do that. I told her that I was officially asking her to. She repeated that she doesn't have to do that. Then, while I literally sobbed the request again to her, she hung up on me.

A pretty bad panic attack followed. I really do not cope well with confrontational situations. I sent a fairly vivid description of what had happened, to my boyfriend, via text, asking her to phone her back again. I also dragged myself out of bed and sent my support worker an email about it, crawling back up the stairs to bed afterwards.

My gripe is this: she knew that I was at home alone, she knew that I was bed bound at the time I was speaking to her, and she should have known that I suffer with extreme anxiety. It was her choice to push me, and deliberately wind me up the way she did.

When my partner spoke to her afterwards, firstly she told him that she wouldn't talk about it with him. She told him that he had refused to answer her questions when she had phoned him previously. This was untrue; she didn't even ask him to answer questions, she'd only said she was having difficulty contacting me. He told her that he had caused a massive panic attack, explaining that he now had to leave work to sort it out. She claimed that she did not know I suffer with anxiety. Every piece of my supporting evidence describes severe anxiety and PTSD. My form mentioned anxiety throughout. She basically told him that she didn't look at either my supporting evidence or my form before trying to contact me.

I suspect she speaks to every applicant in exactly the same way she spoke to us. I also suspect she never reads their information until she's speaking with them, thus causing a lot of anxiety issues for people similar to myself. That woman should lose her job. A position dealing with people who are sick or disabled needs someone with at least a little empathy, particularly if that job requires judging them and being responsible for their future .

So, anyone applying for DLA, please consider yourself warned about the phone call you might receive during the application process. You don't have to put your phone number on the form. Eliminating it will avoid this horrific part of the process.

Is IDS a compensatory narcissist?

For those who can't view the text in the picture on their phone, it says:

Is the Tory Work & Pensions Secretary Iain Duncan Smith a compensatory narcissist?

Here are some of the common behaviourly traits:

• Strives for recognition and prestige to compensate for the lack of a feeling of self-worth
• May "acquire a deprecatory attitude in which the achievements of others are ridiculed and degraded"
• Has persisten aspirations for glory and status
• Has a tendency to exaggerate and boast
• Entertains fantasies of greatness
• Covers up a sense of inadequacy and deficiency with pseudo-arrogance and pseudo-gradiosity
• Produces work not up to the level of his abilities because of an overwhelmingly strong need for immediate gratification of success
• Is touchy, quick to take ofeence at the slightest provocation, continually anticipating attacks, reacting with anger and fantasies or revenge when he feels himself frustrated in his need for constant admiration

DRAW YOUR OWN CONCLUSIONS!

Anybody ... ?

Well said that lady!

Saw this on a group. Made me chuckle so much I had to share it!

An amazing story!

Please read Sarah-Louise's story. You are welcome to re-post her story on your own Facebook, tweet the link to my blog, whatever; let's raise awareness of how severe M.E. can be.

If you would be so generous as to sponsor her too, you will find the link after her story. She's one of the most amazing people I know, so sponsoring her means a lot to me.

There is so much I want to say! Before I became ill I hadn't even heard of M.E and the first twelve years of my life were magical and very english. Then I had a vaccination against meningitis c and my health very quickly began to fall apart. At first it was just all kinds of aches and pains, dizziness, forgetfulness, nausea, the occasional fainting spell and a lot more tiredness but within two years I had a constant migraine and I struggled to drag my legs around because they were so heavy.

Soon I couldnt walk at all and I began to 'freefall' until I was blind and had no memories. I lost all of my words and my ability to understand other people speaking. I was so exhausted even when I woke first thing that it felt like I was trying to lift buildings to try and move.

I was housebound for a year and by the end of it I could stand for 30 seconds and manage a few painful steps, but then I relapsed again and became bedbound. I didnt sit up for four months, I barely moved and I couldnt talk. I had no sense of touch and no strength in my body. I suddenly perked up in April 2004 and could sit up and read a little, I was so excited. In July 2004 I woke up to find my whole body 'on fire'. So hot it felt like I was melting, so painful I wanted to scream and scream and scream. I honestly didnt think I could bear it for one minute. So far I have been on fire for eight and a half years and counting....

At first the pain, the heat and the pressure-which made my head feel like it was gripped in a vice- was so intense that I couldnt move or speak again. For six and a half years I was silent and still, simply enduring, my hearing was so sensitive that I had to wear headphones all the time. My parenst added another door to my room and triple glazed the window. every noise was still excruciating. I had blackout blinds because the light made me physically sick. I released a strange chemical that smelt acidic and clung in clumps to my hair, pooling in white/brown patches on my skin.

I woke one day to find my hands curled in fists, rigid, paralysed and I couldnt open them.

Nothing seemed to change until 2010 when they opened enough for me to be able to use my 'claws' and I began to be able to do little things despite the fire. like read and write and go online.

I am still bedbound, although I had a little time when I could move around the house last year, and the fire has been particularly awful again this last year.

Im 25 years old and I so want to live. I could write booksworth on everything thats happened, but really all I need to say is, Invest in M.E are actually doing something to help people like me...and their are hundreds of thousands of us. We all fight the same dragon, we all want to beat it so we can be free.

And I cant even tell you how heroic my M.E friends are, what they go through and also how kind they are to other people! If you dont know them, you are missing out!

With them and the girls from my old schools, and other people Ive met along the way, I feel that I have a life rich in people. But I am a young, free spirit trapped in a body that will not work! Invest in m.e want to change that.

And as to losing the 50 lb, its something I really need to do, although I do not know who is going to keep mr.kipling in business without my help ;)

Click here for Sarah-Louise's Just Giving Page

Amazing isn't it. Can you imagine being totally bedbound, unable to move, you can't cope with light, or sound, and your body is burning from head to toe - for years? 

I can't. I have M.E.. I've experienced what Sarah-Louise describes, but for me it was only a few months. I simply cannot comprehend enduring it for what must have seemed to be endless.

Sarah-Louise has suffered more than anyone should in one life time, yet all she wants to do is give! She's one of the most encouraging people I know. She's that little light blinking away at the end of the tunnel. So, please .. help her raise the money for IiME. It will make her so happy.

Please think before complaining.

I just saw this posted on one of the benefits groups.

Feel Free to let Atos know how you feel about them .
They have a Freepost address it will cost them to hear your opinion :

Letters , Postcards ,Parcels , should be sent to the following address

Please keep all mailing polite and legal .

Atos
Wyman Dillon Research
Freepost (B57607)
Bristol
B535 3YA

Please share the address.

My ONLY gripe with Atos is that their receptionists were too slow, therefore claiming that we arrived late when we didn't, and that they (Atos) tried to fob me off on my own GP for the WCA. Hardly what the benefits group are expecting people to complain about, is it. 

What they really need to be doing is complaining to the DWP!!! Atos aren't responsible for the things people have problems with. It's our flipping government!

By all means,  write to Atos at the above address IF you have a problem with them, but PLEASE check first that your gripe is with them, and not with the DWP.

• It is the DWP, not Atos, who determine how frequently you are assessed.
• It is the government, not Atos, who chose the ridiculous computerised system that is used (by Atos) to perform the assessments.
• It is that computerised system, that makes the assumptions based on the boxes ticked, that usually piss people off - assumed to be "lies told  by the assessor".
• It is the DWP, not Atos, who decide whether or not to use the recommendation that comes from the Work Capability Assessment.
• etc.

Yes, I know there are times when the assessors do tell lies. But, before complaining to Atos about it, look carefully at the paperwork and try to determine whether it really is the assessor telling lies, or whether it is a tick box on a computer making assumptions. 

My own Atos assessor did include some blatant lies at my medical, so I did place an official complaint. These lies were mostly regarding the physical; she claimed that I was able to do things that I had not been able to do on the day, for example how far forward I was able to bend. She also claimed that I had no walking aids, when I had my stick, and that I walked with no problem to the assessment room, when I clearly fell against one of the doors. Most of what the assessor inputs manually (and therefore personally) is regarding your physical, and your personal appearance and behaviour at the assessment.

When reports contain incorrect things about these, it is fair to make a complaint to Atos, but when a report says, for example "Can fill a front loading washing machine", when the assessor has asked you no such thing, it is simply because the computer has made an assumption. By all means, go through the report and note where it is incorrect for your appeal, but there is no point in complaining about these to Atos; the government (the DWP I believe) picked that computer system, so it is their responsibility!

Similarly, if the report says "walks dog daily", when you did not tell the assessor this, consider whether you told the assessor that you have a pet dog. The computer assumes that you care for the pets you tell the assessor about; so if you are unable to walk the dog you need to specify this to the assessor. Incidentally, if you have a cat, or small animal, the computer assumes that you are capable of regular planning; you are able to feed and care for this animal in the appropriate manner every day (even if the animal is dead in it's cage, rotting, at home). You need to be specific with your assessor; that is your responsibility, not Atos, and not the DWP.

If in doubt, make a complaint to Atos, but also make a complaint to the DWP.

Incidentally, the Atos address isn't exactly secret information. If you phone them, telling them you wish to make a complaint they'll send you the GL24 form (which you can also find online), and a free post envelope.

Atos aren't a company with the primary aim of doing harm to people. They are an Information Technology Services Company. Computers!

Hello!

I am well aware that I have not made any updates for a while. There's a good reason for this. Well, two good reasons.

One is personal. I think I should be honest with myself and say I'm relapsing. I keep saying it's a crash, but it's been ages now. I had a shower yesterday. That was yesterday's activity. This morning (morning by my terms is usually about 1pm) I spent ages looking for my trousers. I eventually found them; on my legs. I'm not sure whether that means I slept in them, or whether I'd already put them on and had forgotten about it. 

One of the things I hate most about M.E., is that when they hand you out the long-term-sick card, they also replace your brain with what I can only presume is liquid nitrogen. I may well be stranded in bed, but I would at least appreciate the ability to control what the hell comes out of my mouth! It's so effing well frustrating; while I lie in bed everything makes sense, yet when I try to rise, to share the ramblings that have been so perfectly articulated in my head, I cannot remember a single thing. 

Anyway, the second reason for being distant recently is that I have pretty much lost hope. In the past I have shared articles as they have cropped up, to illustrate what is happening in this country, share my opinion, my view, etc. But now ... 

Every day there is more and more being written. Every day there is more coming to light. Not just in regards to benefits, but the government. I never wanted to blog about the government, but it's all tied in to one. They're changing .... everything! They are deliberately making the poor, poorer, and the rich, richer. They're taking everything that this country has worked so hard to develop. Privatising the NHS. Selling out to commercial industry. Changing laws to suit their agenda. Creating a secret court, the like of which I'd only heard of in reference to nightmarish stories from the Soviet Union. Honestly, I believe it'll only be a matter of time before the government decides we're no long a democracy.

My fight is gone. What they're doing is so totally beyond the power of people like me, that it seems more like an act of futility, possibly even masochism, to try and fight back. I wash my hands of it.

I'm totally and utterly powerless. I have no income. I have no means of getting any income. I do not believe it is coincidence that people who like myself, have tried to level the playing field, just that little bit, find that their records have been messed up, their MPs don't care, etc.

So ok, government ... I surrender!