Tuesday 30 April 2013

An amazing story!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Sunday 21 April 2013

Please think before complaining.

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

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

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

Please keep all mailing polite and legal .

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

Please share the address.

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

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

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

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

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

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

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

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

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

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

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

Friday 19 April 2013

Hello!

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

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

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

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

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

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

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

So ok, government ... I surrender!