*sigh*

ADULT CONTENT: About relationships and me pulling my hair out over the last couple of weeks.

So, what happens when you're in love with two people, but don't realise? One heck of a mess is what! I am still in the middle of this mess, but this is how things are at the moment.

At about this time last year I signed up to a website called Plenty Of Fish. It was shortly after Ian had decided he wanted a divorce, and I was feeling isolated, lonely, and panicked living where I do, so I was trying to find friends online. The only place I could actually find, that was not for sex hookups was that dating website, which has the option to seek friends. It's a horrible site. Despite spelling out in extreme detail that you only wish to find friends, you get a lot of guys coming on to you, or having a go at you for being on a dating website when you don't want to date, and I even had people have a go at me for being ill!!!!

Anyway, I made three friends on the site. T, C, and K. K is innocent in all of this, so we'll ignore him. I hated the site with a vengeance. C was the only person I was still talking to after a month or so, so when his profile vanished, I deleted my account. I was hurt. I thought we'd been getting on well and he'd just vanished without saying goodbye or anything. A couple of months down the line I had a message from him on a forum I belong to. I was shocked, delighted and confused all at the same time. He had my website, but he hadn't wanted to phone me to contact me, so using my website he'd found another way to contact me. So, we resumed a friendship on MSN.

Meanwhile, T and I became very good friends. We've talked pretty much every day for the last year. He's helped me with various things, including moving house. And I hope I've helped him with stuff too. He's been going through a nasty divorce, which has made me want to wrap him in cotton wool for months.

When G and I split up, my relationship with C became that of what people refer to as 'friends with benefits'. I don't like the term, and we didn't refer to it thus between ourselves. I was confused as to what he wanted, until he said to me that he didn't want a relationship. Having said that however, we then had an even more confusing conversation about babies. I didn't understand whether the entire conversation was a joke to him, or whether there was an element of seriousness to it. Various things he said and did thereafter lead me to believe that he most certainly was not interested in me in any kind of romantic way, so I retreated a little feeling hurt and rejected.

Meanwhile T and I were seeing more of each other. It was coincidence really. A lot of things happened in sequence that we had just happened to have planned to do together. We realised that we were enjoying each others company a huge amount. Things we'd have normally hated doing we were enjoying together. So, taking my heart in my hands I told him that I liked him a lot more than just friends. He reciprocated. There followed one of the most enjoyable weeks I can remember.

I thought it would be the adult and proper thing to do, to tell C that I was now with someone. In my mind I figured he'd be fine about it since he was not interested in a relationship with me. I was a little anxious however. So, since I have no internet access at home, I was sat at T's on my laptop, when I told C that I was seeing someone. And from that moment on, all hell broke loose.

From C's perspective: he had been giving me space. He wanted me to move in to my new place, see that I was capable of standing on my own two feet, and gain some confidence. He didn't know there was anyone else on the horizon, so didn't think he needed to rush any relationship. Meanwhile he was aware that I may well be pregnant with his sprog. So, when I told him that I was seeing someone he was shocked. His initial reaction was actually to say to me that if I tested positive to being pregnant, to please not go through with it (with a sad faced emoticon). Then he said that it'd be the end of our friendship. He said that my being with someone else would eliminate a huge dynamic of our friendship. He was referring to the flirty conversations and sex I presume.

T's reaction to C declaring his feelings was to say that if being with him was the wrong thing for me then he'd back away. I wanted to be with him though. C's reaction had completely taken me aback, so I was still in the comfort zone with T, but at the same time extremely shocked. I didn't know what to do. I wanted someone to come and sort out the horrible mess for me. I did not sleep at all Sunday night. 

I actually do not remember Monday, but know I did not sleep that night either. Tuesday was C's birthday. He'd wanted to take me out for dinner. T made the point that if I went out for dinner with C that I'd have a lovely wonderful evening with him, enjoying his company in a relaxed yummy environment, that would make my decision for me. C actually agrees with him. This kind of suggests to me that they both think I'm rather shallow. It also indicates how fast they were expecting me to make this decision. At that point I had no intention of making the decision within a short time frame. T and I had plans to visit a friend of mine at the weekend. I had been presuming that that would still happen, and would help me in my decision making process. 

As it happened I could not have gone anywhere with C on his birthday anyway. The stress from the two of them caused me a migraine, FM pain throughout my entire body, and I had the worst period pain I've had since I miscarried a few years ago. I was in so much pain that moving my fingers to text was agony, let alone the brightness of my phones screen ... yet there was no way I could not reply to them, as doing so would cause even further problems.

Wednesday morning T texted me asking if I would like him to take the afternoon off work. I had an appointment with my osteopath. Because I was in so much FM pain I was planning to ask him to give me acupuncture, which I then expected to leave me in a lot more pain before making all the pain miraculously vanish. I had explained this to C, as he'd asked me the day before, if I may go out that evening with him instead. So I explained it to T also. He said he wanted to be there for me in the good times and the bad times.

I was actually not in pain after the acupuncture, so I suggested to T that we go for a late lunch. And then I dragged him to Pets At Home because I considered it important to cuddle animals.

My new place is really weird. It has a hot air heating system. I have been sat for a month in my living room freezing my butt off whilst this thing expensively blows luke warm air at me. A little over a week ago I suddenly realised that for some reason all the warmth is being shot out of it backwards into my bedroom. So I started doing everything in there instead of the living room. So, when C or T came over, we would sit in my bedroom. This perhaps was not so wise in retrospect.

T and I were sat on my bed with the cat. I was stroking the cat affectionately, and said to T "I love my cat, can I keep her?". I then burst out crying. T of course was completely befuzzled by this. So I had to then start explaining that C had said to me the previous evening "Can I keep you?", and that saying such to the cat reminded me of C when I was not expecting it, catching me off guard, and thus causing a tear explosion.

As I was explaining this to T, a text arrived. T said it might be C. I said I knew it was and didn't need to check. Something I've not explained previously in my blog, because it has not previously been relevant, is that I am empathic. C also is empathic. Empathy generally means that you can understand what someone else is feeling. Being empathic means you can actually pick up on someone else's feelings in a kind of psychic manner. It causes me big problems to be honest. So, I didn't check the text because I knew it was from C without having to do so.

T became upset at this. He knew I was empathic, but he had not actually seen it like this. He was upset that C and I have such a link, that C could pick up on the fact I was crying and text me, and that I knew it was him without checking. He spiralled in distress telling me that I should be with C, as he and I would never have that kind of a connection. "It's C, Olana, it's always been C. It's so obvious that it's C!" They are quite possibly some of the most gut wrenching words I'll ever hear. 

For someone you love and care for to be in such distress in front of you, saying words that are very obviously pushing you in the direction of someone else whom you also love and care for ... . I cannot express the anguish inside of me. I have never ever been in the position where no matter what I do I will hurt someone, and there is absolutely nothing I can do to prevent it.

As far as my memory serves T then turned to me and said "I'm hot. Take my trousers off!". I'm still rather confused over this. I didn't know how to take it, or what to feel, etc, so I did take them off. I then had a panic attack at him, throughout which I really can't remember much at all. As I was regaining awareness my phone rang. It was C. I was relieved when I saw his name on my screen, but he was phoning to tell me that my behaviour had been utterly despicable that day, so he was making my decision for me, removing himself from the equation, leaving me with T.

I broke down again, sobbing on my bed. T told me to call C back and ask him to come back to the house. He had heard a car roar away outside. I didn't want to call him back. As far as I am concerned people do not say things that they do not mean; he told me he was gone, I assumed he was gone and that a call from me would either be ignored or greeted with abuse. A few minutes later however, C phoned me back himself. I can't remember what he actually said, but I asked him to come back to the house. I told T to get dressed and basically pushed him out of the frontdoor while I sought my own clothes out.

C phoned a few minutes later asking if T had gone. I said he had. He told me that T was sat in his car at the end of my road. He had driven past T rather than turn down my road as he did not want T to know who he was. I started walking up the road to see whether it was T sat at the end of my road. As I did so I saw his car drive over the bridge and across the top of the road. I sat on a bollard at the end of the road and waited. He came back up the road again, turned into a side road, sat and stared at me. I waved. He roared his engine and drove away.

I found it alarming, as did C. I could not fathom why T was sat on my road after he had gone. I figured it was because he wanted to see who C was. He has subsequently told me that he wanted to make sure C actually got there, because I had been in such a state when he left. I believe him. C, however does not.

The result of all this rather teenager-esque activity is that I now have a boyfriend in C, and have had to ask T for space. I need to distance myself from him so that I can stop having such extreme feelings towards him. It is absolutely heart breaking to have to force myself to eliminate someone I love from my life, even if only for a short period of time. C doesn't trust him at all, and is hoping he will disappear forever. This is not my hope. I am hoping we can rebuild the friendship. I have a rather long journey of building trust with both of them again ahead of me.

Quick apology

Just in case anyone is wondering why my blog is not being updated I thought I should explain that I have not got internet access at home at the moment.

I moved house on November 5th, fully expecting to have internet sorted out within a few days. Yes, I am about to badmouth some big companies. Sorry big companies. If you don't like being badmouthed, then sort your act out!!!!

I signed up to Sky shortly after moving in. They successfully moved the phone line over to me. I awaited my broadband modem, and paper work, but it didn't come. So after a couple of weeks I phoned them. I was told that I needed to provide them with a MAC code. A MAC code is needed if you are closing an account with BT, and want the line to be moved over to Sky; the code tags the BT tag off the line (or something like that). So I set my landlord about getting the MAC code, since it had previously been his line etc.

So, a MAC code is needed when you move YOUR line from one provider to the other ... NOT when your landlord is moving his account to another part of the country, and you are starting up an entirely new account. BT should have removed the tags from the line at the same time as moving my landlords account away from the property. Did they do that? Of course not!

I spelt out in extreme detail to both BT and Sky what being offline would mean to me. I told them I am disabled, and that I have to do my shopping online. Without internet access I do not have food. They nodded and smiled and promised me it'd be sorted out within a week. They lied.

As it stands, BT are telling Sky that I have an account with them, that it is in the name that Sky have for me on their books ... an interesting coincidence, given that Sky spelt my name wrong ... and that I have had the account with BT since November 2006. In order for BT to remove the tags from the line I have to phone them and close my account. However, when I phone them to close the account they will not communicate with me because I do not have the account number, the security details and do not even know the number for the line from which I am phoning them.

So, BT will not take the tag off the line. Sky therefore cannot start my line up for me. And now I have been there nearly two months. My contract is for six months. I've had so many problems with the place that there is no way I am going to stay there after my contract is over. So, unless I can find a service that will do me three or four months of internet I'm just not going to be online for the foreseeable future.

Dammit!!!

GPs to no longer sign people off sick

This is a long article (click title to view), and I have a lot to say about it, so I'll just give you a few snippets below. I like my snippets recently don't I!

People should be signed off for long-term sickness by an independent assessment service and not GPs, a government-backed review says.

The review also calls for a new government backed job-brokering service, to find work for people cannot stay in their current job because of their condition.

If the recommendations are accepted people who are signed off sick would also be put on to Job Seekers' Allowance, instead of Employment Support Allowance, for a period of three months.

"What the GPs say is they don't have time to do an in-depth functional assessment and nor have they had any training in occupational health so we think it's providing a new unique service that both employers and GPs need."

And welfare reform minister Lord Freud said: "We just don't get adequate help for people early enough when they need it and what we are creating in there is an incubator for lifelong idleness for far too many people."

He (Dr Richard Vautrey) said: "If what is being described is a proper health, occupational health assessment at an earlier stage in the patient's illness then that would be helpful.

"But if it turns out to be a punitive process just to try and save money without the best interests of the patient at the heart of the process then it will fail."

So, just to summarise for you, in case it is not clear from the above; the latest government proposal is to stop peoples personal doctors being able to sign them off long term sick from work, and to put the responsibility on a new body, which as yet does not exist. This body would consist of occupational therapists, who no doubt will give you a twenty minute assessment which does not give them any true insight into your condition at all, just like the Atos assessments. It would not in fact surprise me if they employed Atos to do it.

Why on earth are they making a fuss about 300,000 people being off work sick? That's a drop in the ocean compared to the unemployment figures. Perhaps if they focused on creating jobs, bringing markets back to this country, and preventing JSA fraud the country would be in a lot less dire straits; and they could stop picking on the sick and disabled!!

Seriously, the population of the United Kingdom is approximately 60 million. 300,000 being ill long term is less than 0.5%. I would say that was almost a miracle in itself.

Where do they think all of these jobs for the sick and disabled are going to come from? If they cannot employ the nearly 1.5 million who are claiming JSA, how do they think they will find jobs for people whose health is unreliable.

I may have been ill for ten years, but I've seen how all of this works; if you're ill at work, you get penalised. You lose out on bonus's and those with poor sickness records are the first to be made redundant. Why would employers take on someone who is uncertain when they'll be in work, or how much they can do, someone completely unpredictable, when there is a healthy person equally qualified that they can employ?

The most ridiculous thing about this is that our GPs know us the best. It did not say as such in this article, but the news item on the television last night apparently said that many GPs feel pressured to sign patients off long term sick when they should not. This, I can understand to a certain extent, as when you are familiar with someone it is human nature to not wish to do them any harm. There in lies the error though; if your GP cares about you they would not sign you off as long term sick, taking you out of the work place, and earning better money, if it were not necessary.

I know for a fact that my own GP feels a lot more pressure from the government to have me returned to work, than he does from myself to sign me off sick.

Well, as one of my friends says, this may simply be an exercise in keeping the public happy again. Show the public that the government is doing what they want, then actually do nothing about it. I hope he is right, as these measures would lead to even further suicides.

Diagnostic Blood Test for M.E.

I'm frequently disheartened by the lack of interest the scientific field has in M.E.. Sometimes though there is a glimmer of hope. There is progress. It is slow, and it is not well publicised, but it is happening. I was very excited at the Rituximab study a few weeks ago. Now there is this!

A bloody test that will potentially identify those who have M.E., and also possibly identify those who will respond to treatment with Ampligen.

"Four genes were identified by Multivariate Regression that separated CFS patients from the normal control group.


"Chronix and Hemispherx are currently planning to [...] identify how different persons with CFS can respond to Hemispherx’s experimental drug Ampligen®.


"Ampligen® is an experimental RNA nucleic acid being developed for globally important debilitating diseases and disorders of the immune system."

I've got M.E. I'm not a benefits cheat

It is with a little sadness that I share this article. It was written in August 2010, so well over a year ago now, and things have not changed at all. It's quite a long article, and it's well written, so I can't really nick bits of it to share with you. If you're interested in how people with M.E. (and similar illnesses) are treated, then I would indicate to you that you can click the title of this blog post to read an article that describes perfectly what myself, and various others, have been and are repeatedly going through.

It is a personal account, describing the process and the writer's personal experience. It is because the process is so badly flawed that many people with M.E. have to rely heavily on other conditions they suffer with in order to actually claim ESA. I'm now kind of wondering how I got through, since my assessor completely ignored my back problem all together.

National Union of Journalists Speaks Out

The National Union of Journalists today released a statement asking journalists to stop calling disabled people scroungers. You can click the title of my blog post to see the whole article, but there are also some snippets below.

I personally find it interesting that it states the rate of Incapacity Benefit fraud to be 0.3%, and the rate of Disability Living Allowance fraud is 0.5%. 0.3% being the lowest benefit fraud statistic. Given the demonisation I've personally felt from people I have met and people I know, it is evident that the press coverage of benefit fraud has indeed lead the public to believe otherwise.

"Over the last few months we have seen a continuous drip-feed of stories which have promoted a range of inaccurate and generalised accusations against disabled people with long term health conditions. As a result disabled people have faced greater hostility from the public, with many claiming that they have experienced hostility, discrimination and even physical attacks from strangers.

"The Work and Pensions Select Committee on Incapacity Benefit have themselves criticised the Government for the language it uses when it releases and comments on official statistics on the incapacity benefit reassessment programme resulting in some media using terms such as "scrounger" and "work shy". 

"Rather than offering constructive support to disabled people, certain stories and features have portrayed disabled people as unsustainable, unproductive and even not disabled at all, but profiting from fraudulent benefit claims"

I've not personally experienced violence, but hostility I have. In fact, one of the reasons I left a dating site earlier this year was the number of people who had a go at me when they discovered that I am incapacitated. The most hurtful incident was Easter Sunday (long time ago now). Having spent Easter very sadly alone I went to the Chinese take away to get something to eat. A new person working there asked me if I had just finished work. I said that I had not. He then asked me what I do. I explained that I do not work at present. I didn't even say I was ill or claiming benefits, but received a mouthful from him asking whether I just intend to live off benefits for the rest of my life. He then had to answer the phone, otherwise I'd have given him a mouthful back and asked for a refund. 

I agree with the NUJ. The media is deliberately stirring up hatred against the disabled and incapacitated. I cannot begin to imagine why. There is a lot of benefit fraud happening. People claim Job Seekers Allowance with no intention of actually working again. Everyone I know who claiming sickness or disability benefits, would much rather be healthy and working. 

One of my friends summed it up beautiful recently. He has Cystic Fibrosis. He is on high rate mobility, and therefore has help with costs towards a car. Someone expressed to him that they were envious. His response was that he would gladly exchange them the car for their healthy lungs.

Please understand that you don't understand

'Oh, I know what that's like; my friend used to have it!'

Just one of many phrases that tends to upset me. Particularly if followed by something along the lines of 'He used to go to all the protests!'. Of course I don't actually say anything on the occasions that people say something like that to me. I know that people are trying to relate, and trying to be nice, but they don't realise that they are actually being rather tactless. So, I'm asking you to understand that you just don't understand.

I know that probably sounds very arrogant, but it is not.

Among people who have CFS / M.E., those experienced at least, it is generally understood that even among one another we do not all have the same experiences, we do not all share the same symptoms, we are not all on the same medications; we basically cannot understand each other. But we respect that. When one of us says we are struggling with such and such, we make allowances for it.

I spent this afternoon with Trudie and Bev. The three of us have M.E.. We are all aware that we inevitably struggle with energy levels, and that spending time together will take a toll on our condition. We are aware that Trudie is the worst affected, and Bev the least. But the way in which we are affected varies significantly. When Bev is exhausted she spends hours asleep. When I'm exhausted my entire body starts to ache and tremble. We simply mutually accept that we have different problems, and that we'll express if we are struggling with anything or need help.

So, if you know someone who has M.E., or has had M.E., please understand that that does not automatically mean that you understand me. To be honest, it's highly unlikely that you understood your friend to start with either. Even among one another we struggle immensely to describe the symptoms we go through, and because it changes from hour to hour, day to day, what we described to you yesterday may well not stand today anyway. So I'm asking of you, please, instead of trying to relate to me, or someone you know who has M.E., just take us as you find us. You can't presume, and to some extent you can't prepare.

Please don't misunderstand me. It is not that we seek to be aloof and mysterious; we really honestly do want to be understood. It is horrible having to try and explain what we are going through over and over again, especially when we don't really understand it ourselves. A little patience please.

Respite

Most of the time when I post to my blog I seem to be complaining, either about how bad my health is, or about the benefits system in the UK. I'd like to make a change. I would like to thank Bev and Mark for being wonderful.

Recently I've been feeling extremely down. I've been dealing with a house move I did not want to make, an ex husband messing me around, and health that I just can't get a handle on. I've had some very dangerous thought patterns.

Today .. well, it is 9pm, and I've not been out of bed properly today. My legs hurt. Until about an hour ago I was finding it hard to focus on anything efficiently. And I'm suffering from the M.E. equivalent of labyrinthitis again. But I've spent most of the (waking) day giggling and laughing.

Bev and Mark, and Roger when he passes the room, are a tonic. Mark in particular helps me see the funny side in everything M.E. related. Not just M.E. related, but it's notable for me as I fail to find any of it amusing when I'm alone at home.

Today I've been fed yummy food, given a birthday cake even though my birthday was a month ago, and made to feel relaxed and happy in general.

Thank you Bev & Mark.

M.E. is serious

So many people simply do not comprehend that M.E. is a serious illness. At this time of last year I was severely ill. I was bedbound, my body deteriorating in front of my eyes. I thought I was dying. I have said this to people over the last year, and been met with a mixture of reactions. Many people do not believe it possible to die from M.E.. Mostly people who die from M.E. die from secondary infections, or complications caused because of M.E., (or suicide),  but not actually the M.E. itself ... in cases like mine though, there was nothing else you could put it down to ... and nothing else with which my doctor can explain the consequences I've been struggling with all year. I only personally know of one person who has died from M.E., but that is one too many.

So, for those who don't believe, please visit the following website: ME / CFS Memorial. A snippet:

"Barbara Ramos Gibson, 63, died on May 1, 2006 from complications of CFIDS/ME and fibromyalgia. She was active in Florida trying to make a difference in the way the disease was viewed as well as reaching out to others. She had become so severe that she was unable to walk and she was due to enter a nursing home when her life ended."

Help Brian :(

I simply cannot believe this; it's as if it was the 18th century all over again or something. What is the last thing someone with M.E. needs? To be locked in a psychiatric ward and told that their illness is all in their head. Especially given the recently apology from Norway's government to their M.E. patients. This is apparently what has happened. The link to the forum is in the title above. The story .. below ...

Hi Guys,

PERMISSION TO REPOST

UK ME / POTS patient Brian Nicholson has been sectioned under the mental health act due doctors claiming that his ME / POTS symptoms are a delusion.

I have written to his MP, his solicitor and a consultant in London who diagnosed him with dysautonomia / severe POTS. His MP is a member of the APPG on ME in parliament so hopefully he'll be helpful. The Countess of Mar in the Lords is also aware of his circumstances.

His solicitor has been asked to take the Canadian and International ME  guidelines to the consultant in charge of his care and to ensure that he is up to speed with ME himself.

Devon doctors, UK, have sectioned Brian Nicholson on the grounds that his symptoms of severe ME/POTS are a delusion. Please could folk kindly send him cards and messages of encouragement. If you could visit, that would be great. The address is below.

Thanks, folks,

C.G.

Please can you guys help out by sending Brian cards, notes and letters to cheer him up like we did with Zoe a few years ago? He's down, scared and lonely and could do with knowing there are folks out here that care. It would help him a lot.

Brian is in:
Haytor Ward
Torbay Hospital
Lawes Bridge
Torquay
TQ2 7AA
01803 654917

If anyone is close by and would like to visit him please let me know and I can put you in touch.

Recording Atos Assessments

Don't have the spoons to comment much. This was posted yesterday, in one of the groups I belong to. Useful information for anyone who is approaching an Atos assessment.

"Well guys, I went through my ATOS WCA today. Was in there AN HOUR. Something you should know though - THEY recorded it for me. They've been piloting a recording system in certain areas of the UK.

They screwed me around quite a bit, mainly being unable to tell me their exact recording requirements, messing up appointment days and then having the DWP come down on me to justify it all! Involvement from MP had them get back to me and offer me a date & time at my convenience with an English speaking, British qualified GP they got in from another area especially.

If I can do that, I'm damn sure you can too. ASK if there is a recording pilot in your area or a nearby area and PUSH for it. Involve your MP if you get nowhere - they WILL and DO stonewall you when you try to enquire - either that or the staff at both ATOS & the DWP have no idea what their own rules are. Point is, try & you might just get somewhere. I know it takes a lot of stress & energy but that recording could be your proof at appeal.

They also took the recording equipment from another city especially! When I arrived the reception knew "Oh, you're the one that wants it recorded". Seemed like a bit of a fuss.

Anyway, I just have to stop fretting whilst I await that dreaded brown envelope.

NB: I did note that there were signs dotted about mentioning the "duty of care" they had to staff & clients but remember that the audio from an ATOS recruitment day says that the job is NOT a caring role. So which is it? Just food for thought....."

Inaccessible assessment centres

Someone posted the following on one of the M.E. groups on Facebook earlier. It illustrates beautifully what we are up against:

"I have just posted this as my status. Please feel free to nick it if you wish

This is a true story, please repost this to show what the levels of treatment the UK is currently doling out on the most vulnerable people in our society. It is not an isolated or unusual example either.

A guy is chatting to a gentleman at a bus stop. He is in a wheelchair. He explains that he has just had to bus from Weston-Super-Mare to Bristol for an assessment of his fitness to work. The reason he has had to bus this far, is that the medical assessment centre in Weston-Super-Mare IS NOT WHEELCHAIR ACCESSIBLE. During the medical, the assessor tells the gentleman that he is going to hit his knee with a hammer to test his reflexes. The gentleman insists that this is not going to happen. The assessor (who is allegedly medically qualified) challenges him as to why he will not allow this. The gentleman replies that it is because HE HAS BONE CANCER.

So, bearing in mind this gentleman's condition, and the fact that he would have filled in a long and tedious form outlining the state of his health, the question is WHY ON EARTH WOULD THEY PUT SOMEONE SO SICK THROUGH THIS PROCESS?

And ARE WE GOING TO STAND BY AND LET THIS CONTINUE?"

I know many people will read this and dismiss it, assuming that the system cannot really be that stupid, but honestly, it really is. 

The experience I had a few years ago is not dissimilar. I was called for a medical assessment. I was not actually claiming benefits at the time, but was told to go for it anyway. The assessment centre is over an hour away from here by car. I can never be certain that I would be able to drive that long to get there, then endure the assessment (let alone the waiting room before hand), and drive home again. They sent me a route plan for public transport. The route plan took over three hours, with several bus changes; some of them did not even meet up, buses leaving before the bus I would have been on was supposed to have arrived at the link destination. There is no way that I would be able to undertake such a journey, even on a good day. They refused to perform a home assessment for me, so Ian felt forced to take the day off work and take me to the assessment. The assessment centre does not have a car park. So, people attending the centre must find parking. We had to park approximately ten minutes walk away from the centre. The assessment suite is on the third floor. There is a lift, but you are told when you enter the building that it frequently breaks down and asked if you will be able to use the stairs if this happens. That is obviously part of the assessment. On that occasion I was assessed by a doctor. He was really nice, and sympathetic to my condition. Sadly, a couple of weeks later I was phoned by the assessment centre saying that there were problems with my assessment and that they could not locate the doctor who had assessed me to enquire about them; that I must attend another assessment. Ian refused to take another day off work in order to take me. I therefore received a letter stating that I had lost the benefits I was receiving. I was not receiving any anyway. The entire episode was most perplexing. 

I believe that the Croydon assessment centre has recently been criticised by their local MP for the fact that it is inaccessible. The centre's argument was that if people could get into the building they were fit to work, and if they were able to communicate with people inside the building that they could not enter, they were also fit for work. 

This is the level of victimisation that we're up against. From the government, and agencies that are supposed to be helping us. I despair.

I'm gonna miss my doctor!

So, I went to see my doctor yesterday. It's the first time he's seen me so ill, as usually I cancel appointments rather than force myself out of the house. It's the first time he's actually seen me use the stick too. Usually I'm too embarrassed, but given how ill I am right now I figured I should be completely utterly honest with him. I didn't actually need to say anything; as soon as I walked into his office he knew. I'm not my usual bouncy, positive self at the moment. He knew the right words to express my wanting to end everything too. It alarmed me a little when he said that we have to hit rock bottom before we can go back up though; last time he said that I wasn't as bad as I am now ... so technically, things can get worse.

We talked about my visit to the rheumatologist. He isn't very happy with her recommendations. We're going to try the Amitriptyline, but only for a few days to start with. If it affects me like it did last time, we'll be stopping. He's prescribed the Tramadol as recommended too, but there was another drug she suggested which he has decided we should give a miss. He's not overly keen on the Tramadol either. I've not looked into it, but suspect this may be something to do with my wanting to fall asleep and never wake up again.

He was unhappy that she did not wish to discuss M.E. at all, but understood why she instructed me to not mention it to the physiotherapists when I'm finally referred. He has decided that despite the waiting lists, and the distance, he is going to refer me to the Nuneaton CFS Specialist unit. When I get my appointment I'll just have to beg someone to take me. He's going to see if I can go in privately to shorten my waiting time. And he's going to stay late on Friday to see me, because he wants to be sure I'm ok with the new medications. I'm allowed to stay with the practice for two further weeks after I've moved house. I will miss him.

I hate this. I hate that I am so ill that I have to question myself before being honest with anyone about how bad things are. It is second nature to play things up. When someone asks you how you are they expect you to say 'fine thank you'. If you respond with anything else you tend to receive a strange reaction. Well, I'm not ok. I desperately need help, and have no idea how to get it. So I had to be honest with him.

I made him a bird out of my snotty tissues. I think he was grateful.

Second Life

I've been asked to write a post on how Second Life makes a difference to my life as someone who is mostly housebound and unable to socialise or interact in the normal way. You may not be familiar with Second Life yourself. It is a MUVE - a Multi User Virtual Environment. That is different from being a game. Imagine that you are chatting on MSN or Yahoo etc, but it becomes real. You can be face to face with the person you are chatting to, or a representation of that person at least. You have been drawn into a different world created by peoples imaginations, and you can move among that world, meeting other people whom you would otherwise not have met, from all over the world, and all walks of life. It is an extreme form of Instant Messaging I guess, with many more ways to interact injected in it.

You can join Second Life here: http://secondlife.com/

Before I share my experience I would just like to warn anyone who does choose to sign up, to not use a username that they use for anything else online. 

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I am in pain. I am always in pain. Chronic pain. For the most part I cannot leave my house, not only due to pain, but because I often cannot stand up for more than ten minutes without starting to black out. I have M.E. - Mylagic Encephalomyelitis. It is a neurological condition which affects the immune and endocrine systems ... officially. In actuality it seems to affect every single facet of my body and life.

I am hypermobile, I have hypothyroidism, I have Fibromylagia, and arthritis in my back. I have eczema, asthma, and ... other things ... but it is M.E. that causes the problems. I cannot, for example, follow the simple process of preparing a meal, let alone remain standing to actually cook it. I am frequently over-sensitive to sound, or light, meaning I cannot listen to music, or watch the television, and need to turn my monitors brightness down as far as it will go. I cannot even begin to describe the fatigue and how it messes with my sleep pattern. Prior to becoming ill I had a career marketing biotech products. I used to swim 50 lengths after work three times a week. I used to go down to London, clubbing with friends, and I did charity work at the weekends. I absolutely loathe the life that I am now forced to live.

At this time last year I was bedbound. I was too weak to stand, and my body would not accept any nourishment. I had discovered Second Life a few months previously, and it was these friends who stood by me through that nightmare.

The ability to log in to Second Life when I choose, gives me a sense of control. On Second Life I have no need for food, so I don't need to worry that I am unable to prepare a meal, or that my body may reject it. On Second Life I can walk for as long as I want to, I can dance, I can even fly! And there's no pain in any of these ... unless my fingers are hurting too much to type, but if that is the case I can then use voice with people.

When you first join Second Life you notice that everyone is tall, beautiful or handsome. As such it teaches you to look beyond the aesthetics of pixels into the person behind the avatar. And it teaches you that you are beautiful, that people can appreciate you for who you are inside. 

On Second Life I go shopping. I cannot do this in real life. Some of my favourite stores are:-

- Curious Kitties

- Phoenix Rising

- Twighlight Star

- Monsoon

I can change my outfit at the touch of a button, which is by far preferable to the unbalanced saga I experience in real life each day. I tend to change my hair too. Several times a day. Most of my outfits have been free though because my favourite past time on Second Life is hunting. There are grid-wide treasure-hunts, each participating store offering a free item.

I also spend time playing games such as Greedy or En Garde, or exploring sims of haunted houses, forests, or moon scapes. And I spend quite a lot of time just chilling with my friends at a venue or their homes.

Even on Second Life though, I have had to adapt to cope to a certain extent. Many sim owners are keen on fancy animated graphics or objects. These cause me to become extremely giddy and nauseous. I used to wear a blindfold to avoid these items (it blanks out my screen), but have recently discovered that I can derender them, meaning that they just disappear and I can enjoy the rest of the environment. I very rarely have music or environmental sounds turned on because of the affect continuous noise has on me. As I already mentioned, when I am in too much pain to type I can use voice. I can also have one of my friends leash me so that I do not have to worry about moving my avatar, and using RLV they can teleport me between sims too.

Second Life allows me to have a life. It gives me the ability to interact with people on a personal level, every day, to make friends, or enemies, and to feel almost normal. It may well be pretend, but it's a whole lot better than the complete emptiness my life would otherwise be.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

At the touch of a button
I have a life
A home
Friends
Lovers
Beautiful vistas
and parties galore.

At the touch of a button
My legs work
My arms work
No Pain
No weakness
Derender irritating objects
and mute annoying people.

At the touch of a button
Rude people
Politics
Arguments
and stress
... sometimes, I need time out.

I return to my bed
to stare at the ceiling, at dust, cobwebs, and spiders
to pain, weakness, loneliness, and boredom
day in
day out
It does not take long for me
to touch that button once again.

Norway's Directorate of Health Apologises for Treatment of ME Patients

Awesome!!!

Norway's Directorate of Health Apologises for Treatment of ME Patients

"The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen (click here).

After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage since then the Norwegian Directorate of Health gave a short statement on TV2 channel, see TV2 Nettavisen (click here).

A statement from the Norwegian Directorate of Health has been received where  they apologise for not having provided the necessary and proper health services to persons with ME.

Such a public apology from a governmental health agency has never occurred before.

Bjørn Guldvog, Deputy Director General of theNorwegian Directorate of Health made the following statement

"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Patients have thanked Norwegian channel TV2 for their massive media campaign.

The TV2 channel has set up a web page containing all mediacoverage they have had – which includes easy access to writings and video clips."

I'm not coping

WARNING: little bit of content that could be considered adult.

Right .. so ... last week I tried to commit suicide. Not going to discuss it any further, and don't wish for your judgement or opinions on doing it, admitting to doing it, or posting in my blog about it. I just want to illustrate how much I am not coping.

I have had M.E. since 2001. When I first hit that wall I didn't think it was possible to be any more ill (with M.E.). I used to assess how I was in % of normal. I can't do that anymore, as I don't remember what it feels like to be healthy and normal. I gradually increased over the years. At the beginning of last year my body started asking me to exercise, so I started sessions with a fitness instructor, and I started seeking work again. I don't know what happened in June, but I became ill. I'm fairly certain I had pneumonia, though anti biotics didn't help me. I also think my body was reacting very badly to gluten, as it was only when I started eating rice that I started to recover. I had been on deaths door. Far far worse than when I first became ill in 2001. I did not know it was possible to be that ill and not die. I am still now far more ill than I was in 2001, but thankfully not as ill as I was last year.

However, I am now alone. And I cannot cope. I cannot feed myself properly. Everyone always tells you that if you eat properly you'll be healthy. Well, if I could manage to do so, I would. I have no freezer, so I am having to try and live on things that don't perish in a fridge. This means I've very little meat in my diet, and virtually no vegetables. I cannot get out to do my shopping, so am living on a fortnightly Tesco delivery. I finished the gluten free diet a few weeks ago, so am having to eat gluten to prove whether I react to it or not. I do. It feels like a lead balloon in my stomach, it makes me tired, grumpy, and depressed. But it's yummy, and most foods that are not perishable contain it. So basically, I'm poisoning myself. If I don't eat I start shaking, feeling nauseous, weak, starved almost. Yet I actually panic at the thought of eating because of how I know it will make me feel.

I went out for a little less than an hour last Wednesday, to view a house. A twenty minute drive there, look round a very bland house, and twenty minute drive back. I was already too weak and unfocused to drive safely. When I got in I literally sank to the hallway floor and just lay there. My body didn't want to move me to the settee or upstairs to bed. It just wanted to remain still. I was too exhausted even to cry. I was unable to stand properly for the rest of the day, and unable to stomach any food. There was no option for me of having the TV on as it would have been too loud and too busy.

I can't put into words how much I am struggling with my health, obviously. I'm not doing a very good job of painting that picture. But I just no longer want to be in this body. It fails me over and over and over again. I'm so tired of guessing what it's doing, or trying to figure out if everything is M.E., or if there's something else to worry about. I'm tired of being in pain, nauseous, tired, of being so weak I can't walk, or sometimes even lift my arms. And I'm tired of having to justify myself and my illness to everyone all the time.

So my doctor referred me to a specialist. He was not familiar with M.E. specialists so I contacted the M.E. Association for him to find out where my nearest ones were. As it happens they are way too far away for me to get to without someone else's help. This isn't what influenced my doctor's decision though; he looked at the waiting lists, said that 500 years was way too long, and referred me to a rheumatologist instead. I honestly have no idea why he chose rheumatology. My appointment was last week .. or the week before .. I'm losing track of time a lot at the moment. The rheumatologist was completely perplexed as to what she was supposed to do for me. She had no interest in M.E. at all, and blatantly told me to stop talking about it. She assessed my mobility and diagnosed me with Hypermobility and elements of Fibromyalgia. I've known for years that I was hypermobile, but never actually had it diagnosed before; what I didn't know was that that in itself could be causing some of my pain. I was surprised that she only diagnosed me with elements of FM, especially considering we didn't discuss it for more than two or three minutes. She's referring me to physiotherapy for them both, and she has told me to not tell the therapist that I have M.E.. That worries me. She has also asked my doctor to prescribe me Amitriptyline and Tramadol. I told her that last time I was on Amitriptyline it nearly killed me but she was unconcerned.

G had an appointment with the hospital on the same day. He has a lump on his throat that keeps coming up and going down. It's a swollen gland. But he's not willing to believe that (despite two nurses and a doctor telling him so) so he's having it poked and prodded by as many people as possible. When he left the hospital he texted me telling me how it had gone. I replied with comments, as any normal person would. When I left the hospital I also texted him telling him how my appointment had gone; no comment from him. When I spoke to him that evening, again he was completely disinterested in discussing my day, only his. It's a big deal for me that I wasted months waiting for an appointment with a specialist who had no interest in me. It's a big deal for me that I received two diagnoses. And it's also a big deal for me that I'm going to be put on medication that I really don't want to touch with a barge pole. And this is a big issue for me; he is completely self obsessed.

I made the very hard decision a few weeks ago to tell him that I could not move in with him. He was very understanding. I thought he'd make a bit of a fuss because of everything he'd been saying for months. He's constantly been telling me that he can't wait to live together, that it'll be great to sit around a nice warm fire in the winter, that we'll have a local pub to go to every week for quiz night, etc. He keeps telling me how lonely he is. That he's lived alone for eleven years, and he wants someone to share his life with. It was when he told me that Jess and he had been planning to move in together, in the same area, before they split up that I suddenly realised that it isn't me he wants to live with. He just wants someone, anyone, and to not be alone. It needs to be the right person, otherwise there will be no happiness.

This is the tip of the iceberg though. I thought I broke up with him the Monday after my birthday, only I don't think he has understood that. Or maybe he has, as he wasn't sending me good night texts saying he loves me prior to that.

My birthday! He promised me a four day birthday extravaganza. He had to take the Thursday (my birthday) off work anyway, so he decided to take the Friday off and make a weekend of it. So, he turned up here on Thursday afternoon with a bunch of beautiful roses and a box of my favourite chocolates. I was impressed. We went out for dinner, for which I paid. When we got back, he told me that he had to work Friday after all, and he left at 9pm saying he'd be back after work. Friday evening he texted saying he was going to wait for Saturday's post to arrive. Saturday afternoon he texted saying he couldn't come because the tread on his tyres was too low. I told him that I knew he wasn't going to come back anyway. So, the next thing I knew he turned up on my doorstep .. presumably to prove me wrong. I sent him home again an hour or so later. I was disappointed and just didn't want to be around him. He's always building things up, and then they never happen.

So, we have self obsessed, and we have making promises we don't keep. It doesn't sound that bad does it. He's supposed to be my Dom. He's supposed to be a decision maker, and in control, amongst other things. He is not in control. When I first met him I did not know that he had financial difficulties. However, he did know that I would be coming into a large chunk of money when the divorce was over. I asked him a few weeks ago whether it was me or the money that he wanted to live with. He said that he had asked himself this question many times, and that it was me. Well, sorry G, but the fact that you had to ask yourself the question at all shows that it's the money. I have managed to stop him from getting Pay Day loans every month. I watched him cut the card up. This does mean however that he's been having more than half of my benefit in order to keep himself running. He had expected me to pay £10,000 debt off for him. I said no. As soon as I said no everything changed between us. His spirits dropped, he's been miserable, and irritable. It's the money .. not me! So I researched and found that he is eligible for a Debt Relief Order. This will wipe out his entire debt so long as he sticks to certain conditions for a year. Rather excited I told him. He already knew. I suddenly realised that he would rather have had me pay £10,000 of my money for his debt, than sort it out himself. An easy route. I was so angry. I still am to be honest. But that moment, I fell out of love with him.

The final straw for me is alcohol. I know the money should be enough. He knows very well that I am extremely uncomfortable around alcohol because of things that have happened to me in my past. Yet, over the time I've known him he's drank more and more of it around me. His excuse has usually been 'It's the weekend, I need to relax!'. One evening, he decided to take my car, which was already flashing on empty, for an hours drive to an all night supermarket so that he could buy some beer, and drive an hour back again; knowing that he had had the last of my money so I'd not be able to fill the tank up again. I was lucky to get home the following day. He has finally admitted that he has a problem with alcohol, and sworn to stop drinking so much. Though in the same breath said that he has to have a pint with work colleagues during the week otherwise they'll know there's a problem.

So, the crux of the issue for me is that to be with him I actually have to become Dominant. I have to watch what happens with every penny, every bill, the wages coming in, etc. And I will have to watch him with alcohol. He's already proved that he can't give up smoking. I don't have the energy to do that. I don't have the motivation or inclination either, but it's the energy that's the important thing. The stress from trying to live that way would be detrimental to my health, which is somewhat ironic considering that he's been telling me for months that being together would make us both happy, and therefore my health would improve vastly.

And then there's C. C is someone I met online just before I met G. I had no idea he fancied me at all. We lost touch, then he hunted me down on a forum. Being a moron I still didn't think he fancied me, until he told me anyway. Since he told me he's been trying to push me, or lure me, into having sex with him. He didn't care that I was with G, and he doesn't want a relationship. I am rather perplexed as to what he really does want to be honest. The pressure he puts on me though is horrible. He knows what happened last week, and yet he's still pushing. This tells me that he too, is selfish, and somewhat inconsiderate. I know from experience with him that he finds it impossible to admit when he's at fault.

He did offer me his place for storage and even a room though, when I decided that I couldn't live with G. Very obviously a bad idea from the moment it popped out of his fingers.

Whilst deciding to not live with G was obviously the right decision, it did put me in a rather difficult position. I suddenly had nowhere lined up to live. Ian was asking me for a completion date so I told him the end of this month hoping I'd find something. When I told him that I had nowhere lined up he and the estate agent came to the agreement that a completion date wouldn't be agreed until I had actually found somewhere. This put the pressure on me to find somewhere, but that was a good thing.

Looking was very depressing. Searching through rightmove.co.uk and similar sites turned up absolutely nothing, and exhausted me. So the next day I dug out the last few weeks newspapers and had a look through. Still not much, but at least I knew which agents to phone. As soon as you explain to someone that you require a ground floor because you have mobility problems they don't want to help you. I tried agents around here, and agents near G. One, local to myself wanted to help.

I've looked at quite a few properties. The first one I looked at was so small and yet so expensive that I had to laugh. It scared me though, that something so small would be so expensive. I didn't think I'd find anything reasonable. I saw a HUGE property though, for less than the first one; it was a semi detached, and had three bedrooms. The problem with it was that it would have added two hours on my journey for when I travel down south. I've settled on a ground floor one bedroom maisonette that isn't all that far from here. It was a relief to have made the decision.

The day before yesterday one of the ladies from our estate agents office phoned me up. She was supposed to phone me weeks ago to help me find somewhere, because of the situation being urgent. She hadn't done so, obviously. I told her that I had found somewhere, that I had paid the deposit, was awaiting the application form, and had no moving date. An hour later she phoned me up to ask what my moving date was. I said I didn't have one. She tried to push me for one, and then told me I had to bring it forward. I told her it was completely out of my control, that I don't know how these things work, but when I know what's happening I'd update the agent. I couldn't believe how pushy she was being after she had never even tried to help me to start with. She stressed me out. All my spoons were gone before my day had even started.

So yesterday when Ian phoned to tell me we were going to lose the sale, I thought the bottom had fallen out of the world. The buyers apparently had told the estate agent that they had been round here the previous night, and I'd told them that I'm not planning to move out. This was a complete blatant lie. I sat here that evening, on my PC, without the TV on. If anyone had even knocked at the door I would have heard them.

I suddenly realised that all of the things I'd thought were misunderstandings, were these pair lying. Her father, who lives in France, is buying it for them, so I had figured that communications between them and him, and then to the estate agents, were getting confused. Apparently not.

A few days after they viewed the property a guy knocked on our door saying he had noticed the For Sale sign and would like to have a quick gander on behalf of his old Dad. He had a look round saying he'd change this, and do that to it, and left. I spoke to Ian a few days later and he said that I'd spoken to their builder. Apparently this guy was not looking at the house for himself at all, but was a builder from them seeing whether the changes they want to make are likely to be possible. I don't understand why he didn't just tell me that!

They told the estate agent that we had planning for a roof conversion. We don't. We put a solid floor down in the loft, but we never got any further than that, and I never suggested that we did. Oh, I can't remember what else they've said. It doesn't really matter. I don't understand why they would tell lies that are very obviously going to be found out as wrong. I don't understand what their motivation is in saying they're going to pull out of the sale, and then in the next breath say they have to be in the house by the end of the month because their lease runs out. I feel really bad for my neighbours having these people move in here.

So, yesterday, our estate agent went to my lettings agent and picked up the forms for me to fill them in. Today one of his colleagues collected them from me, and has delivered them back to my letting agent. I will probably be moving next weekend. I am scared.

So when I received a letter this morning from the Job Centre informing that I have a Work Programme appointment next week I just figured there's nothing else the world can throw at me at the moment. I'm sure I'll be proved wrong in about five minutes though.

Rant - I figured this warranted it's own post too

God's truth ... I would rather be working than ill. I would love to get up at 7:30am, drive myself to some work place, see familiar faces, sit down at my computer and sink my teeth into a piece of work I didn't finish the night before, greet my boss as he enters with his tie all skewiff coz he slept on the settee again ... and then go to lunch with colleagues, actually be able to eat food I like without worrying about the repercussions it'll have on me later in the day or that it'll send me to sleep within ten minutes of eating it. I'd like to sit watching the clock through the afternoon waiting til I can drive myself home again, and then STILL be able to do what I want with my own life in the evening.

People don't realise the luxury they have. All of you out there who curse the sick for pushing your taxes up ... YOU get to work every day .. YOU then get to go home at the end of the day and do far more activity in those few hours after work than I have managed to achieve throughout my entire day ... YOU get to see people, whether that be to argue with them or socialise, you still see people ... and YOU get to build a life. Why the f*** would I have given myself a pay cut of over £12,000 to claim frigging benefits???

The Work Programme

I'm a little perplexed. I was put in the WRAG following the reversal of the decision that my ESA should be revoked. A lady from my local job centre phoned me to arrange an appointment some months ago. When I spoke to her I explained that I am too ill to attend an interview, so she had a talk with me on the phone. She was very friendly and understanding. She had to follow it up, which she said she was going to do so by phone call this month. So she phoned me a few days ago. I had the phone call written in my diary, so was expecting it. I'm not entirely sure whether it was the same lady or not, as she sounded like she'd been turned into an automaton. I am not allowed to talk to them over the phone about my condition, I HAVE to attend the job center, I HAVE to attend The Work Programme, and she was putting an appointment for me to do so in the post. I told her that my condition had deteriorated since we last spoke, but she dismissed me. She did however take my number plate so that she can arrange for me to park in the car park outside the Job Centre.

I went to one of the M.E. groups and told them what had happened. I realised then that I didn't actually know what it was that she had told me I was attending. I thought she had said 'Return To Work Programme', but that doesn't seem to exist. One of the people on the group said this:

DON'T SIGN UP FOR THE WORK PROGRAMME......!!!!!

Not unless you can manage being pushed into a full-time job as soon as possible - they don't get paid for a successful outcome until the have kept you in work for 12 months, so therefore will put you under lots of pressure to be in and stay in work.......!!!!!!!

There are other options that you should be told about - you can do volunteer (even if you could only manage an hour a week), you can do work preparation (this could be anything that might prepare you for work), work experience etc. Don't let them just push you into the work programme - if you have trouble leaving home, you are not going to manage a two year programme and being pushed into a full-time job.

The WRAG can also help you to set up your own business too - they should be telling you that as well - it may be that there is something you could do part-time flexibly at home.

Obviously I've not been told any of those things. I wasn't even sure what I am supposed to be attending until I just received the following letter.

THE WORK PROGRAMME
Personal Adviser Interview

Dear Miss Olana Voljeti

Your next Jobcentre Plus Interview

On: ####
At: ##
Place: #####

We have arranged this interview for you with one of our advisers to discuss the support available to you through Jobcentre Plus.

Do I need to come to the Jobcentre interview?

Yes. It is important you attend and take part in the interview or give an acceptable reason why you are unable to attend. Unless you have a good reason for not attending or not taking part in this interview, the amount of your benefit may be reduced. If you cannot attend at the date and time the interview is booked you must contact us as soon as possible, so that alternative arrangements can be made.

Please let us know immediately by telephoning 0845 604 3719 (textphone: 0845 608 8551) or by your usual method of contacting us.

What will happen at the interview?

The interview will last up to an hour to discuss the help that we may be able to offer you to take the first steps to returning to work. We will be able to tell you about the support that is available and discuss what is right for meeting your needs. At the interview we can offer advice on:
- the steps that can be taken towards getting paid or voluntary work;
- training to update your skills;
- Permitted Work - which could help you to try different kinds of work whilst still being entitled to benefit;
- Tax Credits to top-up low wages, Return To Work Credit and other financial support available
- other help you may be able to access;
- discuss any further support and whether this will be delivered by Jobcenter Plus or Work Programme Providers

What is the Work Programme?

The Work Programme offers specialist support to help you find and keep work. If you become eligible you may be referred to one of our partner organisations, known as providers. They deliver the Work Programme on our behalf. Your adviser can explain more about this at the interview.

Can I get help to attend the interview if I need it?

To help you get to the interview we may be able to provide help with:
- the cost of registered childcare if you have children and would prefer not to bring them with you but have no-one to look after them. (Payment will be made direct to the childcare provider)
- travel costs (you will need to bring proof of these, e.g. travel tickets, with you to the interview)
- any other help you may need to attend the interview
- we will arrange an interpreter if English or Welsh is not your first language

Please contact us before the interview if you would like help with any of the above. We will not be able to provide these for you if they have not been requested before the interview.

Can I bring someone with me to the interview?

Yes, you can bring someone such as a friend or relative with you. However, due to limited space in waiting areas, please only bring one person with you.

If you want to know more

If you want more information about the support that Jobcentre Plus can offer you or you need to contact us about the interview, please get in touch with us on 0845 604 3719, textphone: 0845 608 8551), by your usual method of contacting us or at the address at the top of this letter.

Yours sincerely,


On behalf of the Manager.

Well, there is no way in heck that I can drive there, attend an hours interview, and drive home again, so I guess I'm up pooh creak with no paddle again. If they're not interested in the fact that my condition has deteriorated so much that I can barely leave the house, then they're not going to care that I'll not be able to cope with the interview. So I have no idea what to do now.

The prospect of them forcing me into work .. at the moment, just makes me want to laugh. I'll be blogging about everything I've gone through in the last few weeks at some point over the next few days, so you'll then understand why it seems so laughable to me ... maybe.

God's truth ... I would rather be working than ill. I would love to get up at 7:30am, drive myself to some work place, see familiar faces, sit down at my computer and sink my teeth into a piece of work I didn't finish the night before, greet my boss as he enters with his tie all skewiff coz he slept on the settee again ... and then go to lunch with colleagues, actually be able to eat food I like without worrying about the repercussions it'll have on me later in the day or that it'll send me to sleep within ten minutes of eating it. I'd like to sit watching the clock through the afternoon waiting til I can drive myself home again, and then STILL be able to do what I want with my own life in the evening. People don't realise the luxury they have. All of you out there who curse the sick for pushing your taxes up ... YOU get to work every day .. YOU then get to go home at the end of the day and do far more activity in those few hours after work than I have managed to achieve throughout my entire day ... YOU get to see people, whether that be to argue with them or socialise, you still see people ... and YOU get to build a life. Why the f*** would I have given myself a pay cut of over £12,000 to claim frigging benefits???

Cancer Drug for M.E.

A Norwegian study has shown that a cancer drug improves life, even cures some, of 2 out of 3 of their study participants. It made me raise an eye brow when they said that they now think that it is a somatic disease affecting the immune system. I thought we already knew that? Did they go in thinking it was psychosomatic? I don't care ... it's a known drug, and it's having an affect ... I want it!

Norwegian research breakthrough can solve CFS-mystery

Two oncologists in the city of Bergen in Norway have recently discovered a possible treatment for Chronic Fatigue Syndrome. The drug that they administered improved the condition of two out of three of the patients treated. Several patients were healed.

The breakthrough, published today in the medical journal PLOS one, can provide answers to CFS-patients concerning what causes the mysterious disease and how it can be treated.

“We definitely see an effect. There is hope,” states professor and head of oncology at Haukeland University Hospital, Olav Mella to the TV 2 News.

TV 2 has exclusive access to the research paper that came out in the medical journal PLOS one. Mella and his colleague, attending MD Øystein Fluge, have completed a double-blind study on 30 Norwegian CFS-patients.

The results are sensational. Two out of three of the patients experienced major improvement, while some experienced a full recovery.
New status to CFS-patients

I addition to providing hope to millions of CFS-patients concerning treatment, the MDs are giving the patients, as a group, new status.

The two doctors say the results indicate that CFS is in fact a somatic decease.

"We think that CFS is an autoimmune decease. The immune system has a central role in this," they say to TV 2 News.
Attracts international attention

The discovery has already attracted international attention. However, the news wasn´t released to the public until today, after the medical journal finally lifted the embargo.

Mella and Fluge presented their results as early as in May at a CFS-conference in London. At the conference, reporting restrictions were imposed upon the audience. Following the conference, the doctors have been contacted by several foreign doctors and researchers who attended the London-meeting.
Cancer-drug against CFS

The two Norwegians are the first two doctors in the world to have found that the cancer-drug Rituximab has very good effects upon CFS.

Each year the disease, which has an unknown etiology, ruins the lives of millions of people worldwide. In Norway alone it is estimated that 15.000 people have CFS.
A fortunate conjuncture

Professor Mella and attending MD Fluge have basically stumbled over what could become one of the biggest breakthroughs in the field of CFS.

A patient with Hodgkin’s lymphoma also had the diagnosis CFS. To fight the cancer, the patient was given amongst other treatments, the antibody Rituximab. After a few weeks the patient’s condition regarding CFS-symptoms suddenly improved.

“Completely surprisingly, to both us and the patient, the CFS-symptoms were gone after six to eight weeks after the treatment,” says Fluge.
First in the world

Through a so-called double blind study, the doctors have tested the drug which is normally used in cancer treatment on patients who had CFS. There was a total of 30 people in the study.

Half of the patients received saline, while the other half received Rituximab. No one knew who received which of these two, including the doctors or the nurses.

“The group was split up by the pharmacist who drew lots. The drug and the saline containers were double bagged in red plastic. This was done so no one would see who got what,” says Fluge.

In the group that received Rituximab, ten out of 15 had a significant positive effect. Nine of these had what the doctors characterize as a significant improvement.

Amongst those who received the placebo, only two had a measureable improvement. Only one of these two experienced what is characterized as a strong improvement.

In medical terms these results are considered to be good.

Amongst the patients that experienced effects from the drug, the transformations were enormous. They experienced a dramatic improvement in their symptoms. For some patients, the symptoms completely vanished.

The study did however show that the duration of the effect varies. Most patients have experienced relapse. Meanwhile, the doctors are now experimenting with continued treatments intended to maintain the effect. These treatments appear to be working.
Could transform lives

Some might consider administering a cancer drug to CFS patients to be irresponsible. However, Mella and Fluge point out that the CFS patients in some cases are so sick that they are chained to the bed most of the day.

“When we have cancer patients that are as sick as many of these patients are, they have a very short life expectancy. That says a lot about the quality of life for many of them.”

Professor Mella is convinced that the possible treatment of CFS patients can have tremendous significance.

“Knowing that CFS each year costs society about nine billion dollars, that is in the US alone, says a lot about the colossal costs involved. I addition you have the patients expenses. However, even more important is the fact that the quality of live for millions of patients, worldwide, can dramatically improve.”
Offered therapy

Currently there is no test to set the CFS diagnoses. Being diagnosed with CFS results from ruling out all other possible diseases.

In other words, today there is no cure or treatment for CFS patients in the Norwegian health system.

People who get the diagnoses are being offered therapy and courses to learn how to live with the decease.

While several private clinics and individuals offer alternative treatments, no one has so far been able to document that their (often very costly treatments) actually have an effect.
Think they know what causes CFS

There have been several theories about what causes CFS. Still the research community has not been able to come to a conclusion.

The core of the matter is the question of whether CFS is a physiological or psychological condition. In Norway, the latter explanation has been the prominent one.

A Norwegian survey shows that 52 percent of Norwegian health caretakers believe that CFS is a psychological condition.

In the last couple of years, theories about CFS being a physiological condition have gained more impact. Now it looks as if the researchers have taken a huge step towards confirming this theory.

After having seen the effect which Rituximab produced in the majority of the patients in the study, their theory is that CFS is an autoimmune decease.

In short that means that the body’s own immune system attacks the body’s own cells.

Other researchers have on previous occasions indicated that CFS is an autoimmune decease. Following this study with Rituximab in Bergen there is now, for the first time, evidence that supports this theory.

“The results show that the immune apparatus plays a central role. We still haven’t found the breaking in point. The fact that the patient has an effect of the drug, might help us. However there is quite a lot of lab work that remains,” says professor Mella.

Many people will probably read this report and wonder: “how can I, or someone I know, get this treatment?”

“They will have to wait. First of all there needs to be bigger studies. We definitely see that there is an effect. We will find a treatment, however it might still be years until this can be offered to all patients with this decease,” says Mella.

Both Mella and Fluge think that this is the first step on the road to finding a treatment for these patients and also providing the correct diagnosis.

Response to my Atos Complaint

Dear Miss Voljeti,

Thank you for your letter dated 12th September 2011 that I received today, in which you express your concerns regarding your Employment and Support Allowance Medical Assessment conducted by ###### on the 26th April 2011.

A full investigation will now take place into the issues you have raised and we aim to complete our investigation within four weeks. However, if the investigation takes longer than anticipated I will continue to update you of our progress.

Your letter indicated that you will be moving house shortly and I therefore confirmed your address with you by telephone today. As I mentioned, should you move house in the near future please telephone me to advise your new address to ensure that any future correspondence is received.

Should you have any queries in the meantime, please do not hesitate to contact  me on the above telephone number or the address below.

Yours sincerely,

#####
Customer Relations Manager

As the letter suggests, this lady did phone me a few days ago to check where to send the letter, and what to do regarding future correspondence. I am actually quite impressed at how fast they have responded, and how courteous and professional she was in speaking with me too.

I feel a bit bad about it really. It's taken me months to actually file the complaint and they respond so quickly. I can imagine that to a healthy 'normal' person, my taking so long to make the complaint could easily be interpreted as laziness, or slacking, or even my being half hearted in making the complaint. The truth is that I've simply not had the spoons and the lucidity to do so at a time when I wasn't dealing with my own personal crap.

So, anyway ... having been impressed so far ... I wonder what the outcome will be.

Second letter from Chris Grayling

I received another letter from Chris Grayling, via my MP yesterday.

Dear MP

Thank you for your letter of 15 September to the Minister for Welfare Reform on behalf of Ms Olana Voljeti, regarding the Work Capability Assessment (WCA). I am replying as the Minister responsible for this area of teh Department's work.

People are entitled to Employment and Support Allowance for as long as they satisfy the entitlement conditions. To ensure that people who receive the benefit are doing so correctly and to achieve this, people will be considered to undertake a WCA to make sure that they meet the entitlement conditions. This is part of the claimant's responsibilities which balances the right to benefit.

However, it is appreciated that the process can prove stressful for some people and a number of steps have been taken to ensure that this is minimised where possible. All claimants are sent form AL1C prior to their WCA, which contains details of who to contact if they have specific needs or concerns such as the ones Ms Voljeti mentions. If it is not possible for the claimant to attend the WCA then the Healthcare professional responsible for carrying it out may, for example, be able to conduct a home visit instead if this would be more appropriate. Furthermore, even if a person fails to attend an examination, the decision maker will review all the relevant facts before reaching a decision as to whether or not benefit is payable.

I hope this is helpful to Ms Voljeti.

With best wishes,

Rt Hon Chris Grayling MP
Minister for Employment

I am not 100% certain what he is actually addressing here, and am too foggy to actually look through my letters to work it out. I remember mentioning that it would be useful if people attending medical assessments have the ability to contact the medical centre in case they cannot attend the assessment for any reason, since if you do not attend you automatically fail the assessment.

Firstly, he seems to have misunderstood my meaning. I know from personal experience that I cannot arrange a home medical unless you definitely cannot attend the medical at the centre. I was told, when trying to arrange for my medical to be performed at home, that I would have to have someone take me. With conditions such as M.E., it is quite possible that we would not be able to attend on the day of the medical when we had actually been fine the day before. My point however, was that there are a number of things that could prevent someone attending ... ones car might break down, a family emergency, the person giving you a lift may be called into work ... none of these would constitute a medical being performed at home.

He also seems to be oblivious to the reality of what is happening. Everyone I know who has been unable to attend a medical, including myself a few years ago, automatically had their benefits revoked. No one contacted me to ask why. They were just stopped, and they were stopped before I received any letter explaining why. The reason given, very clearly on the letter stated that it was because I had not attended the medical.

I would like, but know is unlikely to happen, for as many people who had that same experience, to write to Chris Grayling, all within a one week period, telling him that whilst he believes his system works in a particular way, it in fact does not.

Atos Register of Shame

Atos Register of Shame

If you've been through the Atos grinding machine, do please submit your own stories to the site linked above. The more their treatment is swept under the carpet by officials, so it's up to us little people to make it publicly known. Your identity will be kept anonymous.

You can email your story to atosvictimsgroup@gmail.com.

My medical assessment is up!

### Incidentally, if anyone can tell me how to make my title into a link with the new Blogger interface please leave me a comment. ###

Hoorah, my medical assessment with all it's lies etc is online and can be viewed here. Scroll down the page to the link marked 'ESA Medical Report Form'. It's a word document, so will want to save to your computer for you to read it.

It's 28 pages long, but do please go have a look at a little of it. I have added annotations throughout the document, pointing out where the nurse mislead, lied, twisted what I said, etc. I am aware that I am fallible, so my own observations will not be 100% correct, but the fact that the entire document is littered with fallacy disgusts me. It seems blatantly obvious to me that her sole purpose the day was to disqualify me from claiming benefit, not from actually assessing my needs.

Confused

I am so confused. So, my duty today, is to share that confusion with you.

I'm just so sick and tired of being constantly ill. If it isn't one thing, it's another, and for the most part I can't even figure out which thing it is causing the symptoms, and therefore what to do about that which is going on with my body. 

What am I talking about? Well, this may not actually make sense, until you've read all of it ... possibly twice.

I have M.E., as we already know. I may have PMDD. I also may be gluten intolerance. (There are other things, but these are the ones confusing me presently).

If you're familiar with my blog, then you're already familiar with some of the ins and outs of M.E.. But what is PMDD? Pre-menstrual Dysphoric Disorder.

"The symptoms of PMDD are similar to those of PMS. However, they are generally more severe and debilitating and include at least one mood-related symptom"

This was first suggested to me as a problem early last year, by my counselor. I had come off anti depressants just before Christmas 2009. In the January I had what I can only refer to as a funny turn. It's very hard to describe, but I became extremely irrational, I lashed out at friends, and people I interacted with on a daily basis (ironically, not Ian). I thought I was losing the plot, but it went away after a few days. Then it happened a few weeks later. It was my counselor whom identified that it was happening prior to menstruation. It was extremely scary. I talked to one of the doctors at my surgery about it. The notion was dismissed. I had one more episode, and then it stopped happening. I haven't thought anything of it until the last few weeks.

A few months ago, during the extreme stress of the Atos medical assessment procedure, I completely lost awareness for about twenty minutes; when I regained awareness I found I'd been self harming, and apparently harming the carpet also. A few weeks ago I had another 'episode', and again, last week I turned on my friends. It's horrible. You don't know you're doing it; the feelings of irrationality and paranoia creep in so gradually, that it feels rational, it feels like what you're thinking is right. And then it suddenly stops, and your mind feels like it has been released from a clamp, and you feel so stupid, guilty, and sheepish.

For me, the day that those feelings stop, they are replaced by a rush of OCD. I need to clean, tidy, obsess over something. So of course, I completely exhaust myself, and crash. Then I have period pain to deal with. I'm at the introductory period pain at the moment, which I've now had for three days. I'm expecting the extreme agony to kick in some time today or tomorrow. I have my kick-ass anti-inflammatories by my side awaiting their destiny as saviour of the month.

I finished the three month gluten free trial ten days ago. I gradually started introducing gluten to my diet again. The idea was to see whether I noticed any difference to my health with no gluten in my diet. I had failed the blood test for Coeliac Disease. I had thought that there was no difference to my health. I have now changed my mind.

I gradually introduced gluten back into my diet. I had Chinese pancakes the first day. A slice of bread the next day. Nothing much seemed to happen. I don't remember what I ate on the third day, but I spent most of the day flaked out exhausted and asleep; I thought this was simply an M.E. reaction to some of the activity from the previous day. I kept falling asleep wherever I sat or lay down.

So, I've eaten gluten fairly normally for about a week now. I didn't really think much was happening. I've been exhausted all week, but I put it down to an M.E. crash and stress. It was only yesterday when G came over and watched me fade extremely fast after I ate stuffing with my lunch, that I realised that I am reacting to gluten.

I had decided to not go over to his place for the weekend. I was feeling grumpy and exhausted when I made this decision. So here's my confusion...

Why was I grumpy? Was it because I am pre-menstrual? Was it because I am reacting to gluten? (One of the symptoms of gluten intolerance is lowered mood following gluten consumption). Was it because I am exhausted by M.E.?

Why am I so exhausted? Is it because I've been pushing myself too hard with M.E.? Have I been pushing myself too hard? Is it because of the stress of everything going on around me? Is there so much going on anyway, or is that just PMDD making it feel that way? Am I exhausted because of hormones preparing my body for menstruation? Or is it because I am reacting badly to eating gluten again?

How is my doctor ever supposed to work out what is going on with me, if I can't figure anything out to give him a lead to start with? This is just ridiculous. I am struggling so hard to cope at the moment.