I invite you to start a journey with me.

It would seem that I may have been short changed by the DWP. As anyone who's been following my blog will know, I am fairly familiar with the benefits system having researched it for the last year. However, it seems that I may have missed something blindingly obvious, which has just been pointed out to me by someone on one of the benefits groups.

Let me lay it out as simply as I can:

• Since 2001 my National Insurance has been paid by me, out of 'pocket money' my husband gave me over the years.
• As such, when I started receiving ESA last April I should have been put on Contributions Based ESA. (I need to check whether I was or not).
• Contributions Based ESA is not means tested. They do not take into account the income of your partner, or your savings.
• Contributions Based ESA, is however, limited to 12 months.
• In November of last year I received a divorce settlement. At the time I was uncertain of whether it would affect my benefit, since it was more than £16,000, so I phoned the DWP for advice.
• I was informed that any savings over £16,000 meant I was disqualified from receiving ESA, but I would still receive my NI stamp.
• I discovered a few months ago that when I made that phonecall they closed my claim to ESA, which means that since November my NI stamp has not been paid either.
  
• The person I spoke to did not tell me they were closing my claim. I received no mail informing me that my claim was closed. I received no mail informing me that they would cease paying my ESA either.
  
• When I was informed, a few months ago, that my claim had been closed in November, they also told me that I should have been providing bank statements to the DWP since November, showing my spending. (This confused me).

There has been a mistake somewhere. Either I was not on Contributions Based ESA, which I should have been, and that is why my claim was closed ... or the person I spoke to at the DWP incorrectly assumed that I was on Income Related ESA and closed my claim when they should not have. I suspect the latter happened, as that would possibly explain why I received no mail (ie, someone covering their tracks just made the claim disapear).

So, my job now, it seems is to:

1. Check whether I was on Contributions Based ESA or Income Related ESA to start with.
2. Assuming I was on Contributionas Based ESA, I will need to collect together evidence for the DWP to claim back payments from November until April (as my claim would have been ceased in April anyway). With advice, the evidence I need is as follows:

• a timeline of date of claim,
• the decision letter,
• the time I was in receipt of payments and how much,
• when payments were stopped,
• my NI record showing payments not made,
• date received divorce settlement

Of these the only information I do not have is my NI records, but I am fairly sure I can get those from the DWP.

So, I invite you to follow me on this journey. I have no idea of what is to come, whether it will be very simple, or whether I will get absolutely nowhere. Let us see!

Epstein-Barr Syndome

"EB (Epstein Barr) is a nasty little piece of work" one of my friends declared on Facebook last year. At the time all I knew about it was that I had tested positive for it in a blood test in 2002, and been told by the doctor that it indicated that I had probably had glandular fever at some point. As such I thought Epstein Barr was Glandular Fever. I wasn't entirely wrong.

Epstein Barr is sneaky. It can present with extremely mild symptoms, like a cold, or even no symptoms at all. As the article linked in the title explains, when symptoms are present they usually clear up within a couple of months. My understanding of viruses was that they usually passed a lot more quickly than this. For me, if symptoms last that long, I would start to think that the symptoms were normal, part of my body's functionality. This is probably what did happen with me, and the reason that I did not have it treated.

In severe cases people will represent with full blown glandular fever ("mono" to any Americans reading). Swollen glands, fever, extreme fatigue, being a few of the symptoms they will experience.

Epstein Barr doesn't just go away. Like other members of the herpes family it may lie dormant causing further problems later on in ones life. It has been linked to a number of diseases and condtions, including of course, M.E.. Other diseases believed to be linked to Epstein Barr include Fibromyalgia, Multiple Sclerosis, Rheumatoid Arthritis, Systemic Lupus Erythematosus, and some cancers.

Epstein Barr, being a virus, tends to appear in clusters. I remember at college several of my peers having Glandular Fever within a few months of each other. I never had Glandular Fever, but my best friend did. I spent a lot of time by her bedside because she was extremely ill with it. I possibly did have EB at that time, but did not display any of the symptoms.

I actually believe that we had a cluster of it while I was at school though, before college. Many of my peers from school are now ill. I know of at least four people I was at school with who now have M.E.. My sister has MS. I have not done the research, but I suspect there are others from our years who have autoimmune conditions.

It is an accepted fact that M.E. seems to appear in clusters. I wonder whether any epidemiologists have explored whether Epstein Barr related conditions also appear in the same clusters. Did my school suffer from Epstein-Barr Syndrome?

How much do hormones affect M.E.?

If this is the first time you've read anything about M.E., please do not think that in any way what I'm about to describe is the norm. It is not, hence my reason for blogging it.

As I'm sure we're all familiar with by now, I lost my baby on April 13th. A month and ten days ago. As such it's been six or seven months since I last had a period. I had forgotten some of the things that go alongside having a period ... for me at least. Obviously, everyone's experience is different.

For me, in particular, I have a rather strange form of PMT, which always seems to happen the day before my period. I'd completely forgotten about it, and it was only yesterday evening when I sat exhausted staring bleary eyed at the computer that I realised that was what was going on. (So yes, you maths genii, I started my period today).

Yesterday morning I got up, and I decided it would be a good idea to bake a cake. On a normal day this would be a challenge for me; I would struggle to stand up to mix the cake, so would opt to bring the mixture in to the living room and do it ... make adaptions for each part of cake making as I went along. This did not happen yesterday. Not only that, but because I have only just moved in to a new home, the entire process was a whole lot more complicated.

First of all I went to Tesco to buy some ingredients I did not have. Whilst there I figured I may as well fill the car up with fuel. I did use a disabled parking space, but I left my stick in the car and did not realise until I returned to it. Once home, I realised that T does not have some of the things I required for baking a cake, and that some of his things were not suitable. As such this meant unpacking boxes containing my kitchen belongings. This in turn meant moving a lot of boxes around upstairs, bringing some down, taking others up. There were still a few boxes littering up the bedroom, so I decided to empty and sort through the contents of them. I figured that since I was going up and down stairs a few times I should take laundry down with me, so I ran the washing machine three times. Once I'd moved the boxes from the bedroom floor I gave it a vacuum, then vacuumed the landing, T's bedroom, and the stairs were covered in cat fur, so I vacuumed them, taking the cleaner downstairs with me. Once the cake was in the oven I vacuumed the kitchen, utility room, and office floors, before giving them a good mopping. While I waited for the cake to cool I vacuumed the hallway and living room, took the clean laundry back upstairs and sorted through it. Once the cake was cool enough I made the icing, and covered it carefully with a bowl. I then went and ran a bath, and only realised it was 6pm because T got home from work.

I know I have gone in to meticulous detail about my day, which could be considered a little odd. The reason though, is that it demonstrates that I did A LOT yesterday. I am not sure whether this is considered a lot by a healthy person's standards, but it certainly is for someone with M.E.. Normally such activity would be spread out over the period of a week, or more.

As long as I can remember I have been this way though; the day before my period I get a completely new wind, and not only can do everything, but need to do everything. After I'd had the bath last night I dragged T out for dinner, where I eventually discovered that when I left the fuel station in the morning I'd forgotten to put my debit card back in my purse. Oops. Thank you for paying for dinner T.

I just couldn't stop. I needed to do more and more. The way my mind was working felt so completely different to normal. I was able to plan, and to multitask. I was able to plan what I would do during the time used for cooking the cake. I was able to see that I could take something downstairs, and then take something else back up with me for later use when I returned to continue what I was doing. I know these are normal thought processes that normal people do all the time, but usually I really struggle with these. The worse I am with M.E. the harder it is to think in such ways.

I realised last night that I used to be that way all of the time. Before I was ill, obviously. When I used to work my colleagues called me the Queen Of Multi-tasking; anyone who knows me now would think that was a joke ... unless they saw me in action yesterday anyway.

And this leads me to wonder ... this now only happens to me the day before my period. From what I remember of GCSE biology, that is the point at which the hormone levels are crossing over, triggering the shedding of the uterine lining. Are there some other chemical reactions going on also caused by that crossing over that cause me to become hyperactive? Am I being hyperactive, or is something actually cancelling M.E. out for a day? When the hormone levels cross over the other way do I have the oposite affect? I don't know, but I shall try and remember to watch out for it. And does anyone else with M.E. experience the same thing that I do?

The cake is delicious by the way.

Raise money for Young People with M.E.

Jane, one of the members of one of the groups I belong to on Facebook, wishes to raise money for the charity AYME. Yesterday my boyfriends mother did a sponsored run in aid of Cystic Fibrosis. It made me a little sad knowing that most of us with M.E. would love to raise money for charities, but we can't do sponsored runs, or walks, etc. Jane has come up with a novel idea; she is going to give up Facebook for a week to raise money. If you are able bodied, and healthy, this may not sound like much of a challenge, but please believe me when I say it is. When you are housebound, or worse, bedbound, the internet is a lifeline. Facebook is one of the few social mediums many of us have. Giving it up for a week, for me at least would be amazingly challenging, so I really admire her for this.

So please, I urge you to sponsor her. You can do so through Just Giving, here. Give as little or as much as you can!

Hatred of those on benefits; discuss!

When I heard about what had happened to the Philpotts, my reaction was not dissimilar to that of Carole Malone, though for completely different reasons. I was shocked obviously, and sad that anyone would lose one child to fire, let alone six. Like Carole though, I was almost not surprised. Over the last few years the government and media have been stirring up so much hatred against those on benefits, that when someone with 17 children, living purely on benefits comes to the publics attention, it isn't all that surprising that one person, out of the thousands or millions that have a grudge against such people, 'takes action into their own hands'. Of course, we don't actually know that is what happened, because as yet they don't know who caused the fire. This is the opening to the article I've linked below though. An article in which it discusses this hatred.

Owen Jones "Hatred of those on benefits is dangerously out of control"

The media have mislead people so much over benefits that everything is now completely misunderstood, even the simplest things. I've read comments on articles recently where people simply cannot comprehend the difference between Disability and Sickness. People seem to think that if someone is a little bit sick they suddenly receive a free car for the rest of their lives. My own father, when I told him of the predicament I was in a few months ago, responded by telling me that I would be fine as I could claim £26,000 a year in benefits and have a council house. Worse than this though, some journalists are deliberately misleading the public (Rob Liddle, to name one).

I want to throw my toys out of my pram and declare that it isn't fair. I never chose to be ill. I certainly did not choose to lose everything I had in life. I don't want to be unemployed or struggling. Sometimes, these people deliberately stirring up hate against me is more than I can take. I don't see why I should be ashamed of who I am. Why should I dread meeting new people because of the inevitable question 'so what do you do?'.

I often wonder how anyone can believe the ridiculous claims made in the media. I cannot personally imagine hearing a 'fact' and not questioning it or thinking about it. It seems that people just accept these things at face value though. If they actually stopped to think about it surely they'd realise it's all rubbish. How can they possibly think that ALL families on benefits have countless children, a free car, a free house, plasma televisions, Blackberries, Nike's, etc? Surely the evidence before them contradicts what they are being told? When they drive through drab council estates who do they think lives there? A class even 'lower' than the 'lowest'?

I'm lost in working out what it is that they're trying to achieve. I understand that they are demonizing those on benefits ... all benefits, not just disability and sickness benefits ... with the aim of getting people on side, so that decreasing benefits actually goes down well with the general public. I understand that they wish to decrease benefits to make what is truthfully a minute saving in the grand scheme of things. But what do they think is going to happen? The truth of the matter is that people living on benefits are already struggling to make ends meet. An amazing amount of people are simply living on Housing Benefit and Job Seekers Allowance. Housing Benefit pays only 80% of their rent, so a huge amount of their JSA goes on paying off the rest. They receive £67 a week; this has to pay the rest of their rent, their bills and living expenses. It's not easy. If this amount if cut further they will be pushing people over the edge. As it is many people are relying on the generosity of others; on handouts, spare rooms, free meals. Not everyone has generosity available. People will starve, or freeze. They are essentially pushing people to suicide, or at least that is the way I see it. I'm sure they realise that, and I'm sure that the thought of claimants decreasing, no matter what the cause, makes them quite happy. It decreases that 'class' after all.

Last year, when I was too sick to get out of bed, too brain fogged to work out how the benefit system worked, one of my friends said to me 'Do you think they'll just let you rot?'. He truly believed that the system has the best interest of every individual at heart. But how does the system magically know when I cannot do anything for myself? How can they know there is one person out there who is totally alone, without internet access, unable to get out of their house; someone who simply has all usual avenues cut off? They will let you rot. They will, and they do.

So that's me. I've said my piece. I am glad and a little encouraged to see The Independent covering the hatred of those on benefits in this manner, and I hope that others start to finally see the light too.

Atos Miracles

Nonchalantly shares a link, and sneaks away from her blog ...

Atos Miracles




nb,
Please note, sarcasm!

BMA to ballot on Work Capability Assessments

All of this is quotes, because I am completely brainfogged at the moment and know I would completely fluff up trying to explain it myself. People one one of the Facebook M.E. groups have been kind enough to explain it for me so that I can blog it, but they wish to remain anonymous. Hopefully I can come back to this when I am a little more alert and draw my own opinions and discussion ... we shall see!

Firstly, we have breaking news:

BREAKING !!! BMA to ballot on Work Capability Assessments !!! #WCA #Atos #DWP

103 HAMPSHIRE AND ISLE OF WIGHT: That conference, in respect of work capability assessments (WCA) as performed
by ATOS Healthcare, believes that the:
(i) inadequate computer based assessments that are used have little regard to the nature or complexity of the needs of long term sick and disabled persons
(ii) WCA should end with immediate effect and be replaced with a rigorous and safe system that does not cause
avoidable harm to some of the weakest and most vulnerable in society.

103a SCOTTISH CONFERENCE OF LMCs: That conference, in respect of work capability assessments (WCA) as performed
by ATOS Healthcare, believes that:
(i) the inadequate computer based assessments that are used have little regard to the nature or complexity of the needs of long term sick and disabled persons
(ii) the WCA should end with immediate effect and be replaced with a rigorous and safe system that does not
cause avoidable harm to some of the weakest and most vulnerable in society.

The GMC will be forced to institute a full investigation and under an obligation to take action to halt the assessments by revoking "Approved Medical Status" to testing centres. The motions were submitted by the Scottish LMC Conference and Hampshire and Isle of Wight LMC. Motions 103 & 103a can be viewed here:

http://www.bma.org.uk/images/lmcconfagenda2012_tcm41-212632.pdf

Which was complete and utter gobbledigook as far as I was concerned. So I asked for clarification. This is where we believe things stand:

"In order for a health professional to work they have to register with their governing body - GMC for doctors, RCN for nurses and HPC for allied health professionals (OTs, physios, etc). On top of that, they can join other organisations and trade unions, so BMA is an organisation which represents doctors, unison is the trade union for nurses and allied professionals.

"As the GMC are the governing body, they set the standards that doctors have to meet in order to continue practising as doctors but they also set standards for the organisations which employ doctors.

"So if the GMC decide that ATOS aren't using doctors in the right way then they can remove their approval which then has repercussions for the doctors working for ATOS and looks bad for the government."

...

"GMC are there to protect ultimately the public...so if the voting is successful and become BMA policy, GMC will have no choice but to investigate not just in terms of how the doctors' operate and good medical practice but ultimately to protect the public against such practices. Without BMA and GMC backing the doctors would be vulnerable practising in ATOS centres..and that may effect things like liability insurance etc and it would be a huge blow/set back for the government and in particular the implementation of PIP."

Voting for something on this matter is taking place on May 23rd. Hopefully I'll understand it by then.