An amazing story!

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here for Sarah-Louise's Just Giving Page

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

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

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

Please think before complaining.

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

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

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

Please keep all mailing polite and legal .

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

Please share the address.

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

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

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

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

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

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

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

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

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

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

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

Hello!

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

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

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

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

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

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

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

So ok, government ... I surrender!

M.E. Herbalist

I bring to you today, the story of another small trader, who has M.E.. If you're interested in herbalism, or seeking herbal product from someone who understands the condition, Merionwen is the business you want to look at. Here is her story:

Around six years ago I was married, had two smashing children and a job I loved. I had spent years working in the heritage and tourism sector. I provided costumed interpretation for a variety of heritage sites. Bringing entertainment to education and a sense of fun to stuffy museums. Prancing around castles being everything from the cook to the lady of the manor.

I was lucky enough even to be able to involve my children. It was long hours and involved a lot of background research but I loved it.

Then disaster struck. I had been diagnosed with gynaecological problems and severe anaemia. I just couldn't seem to find any energy.
I continued to try to work but my lack of energy started to show the cracks in my marriage.

I devoted all my time to my children foremost and then my career. I expected support and understanding from my husband but that wasn't to be.

Eventually the marriage became untenable and we went our separate ways. I suddenly found myself cast in the role of a single mother. Financial support was non existent and work pressure increased.

This stress was then compounded by my father falling ill and what seemed at the time as a minor car accident.

I suffered serious whiplash and I was left with back pain that never seemed to recover.

Next came the constant round of tests and doctor's appointments. I kept returning asking for blood tests and a reason why I just couldn't seem to get back on my feet. I was constantly bone weary but this was coupled with the searing pain that never seems to settle in any one place. I had constant muscle burn and my fingers and toes would feel so swollen I couldn't walk or pick up a cup of tea.

this all came to a head one day when I found I couldn't wash my own hair and cried out with pain when my daughter hugged me.

So back to the gp and a long and frank discussion. It was suggested I had fibromyalgia coupled with cfs.

Further tests proved this so.

I went on to be prescribed a battery of SSRI's and painkillers.

Over the following two years I put on five stone in weight and had to give up work. I just couldn't cope with being a single Mum and live with this illness all the while keeping up with my career.

It broke my heart the last time I said goodbye to my workmates.

I felt at my lowest ebb.

But, things were about to change. Almost like a bolt from the blue I was to meet my current husband to be, Andrew. We were sat at the table of a mutual friend while I expressed my loathing of the male species. Then he smiled and made me tea.

There is more to the story than that but lets just say over time I fell deeply in love.

He opened up whole new way of thinking for me. When discussing the medication it was him that first made me question whether the side effects were not as bad if not worse than the illness itself!

I am pleased to say I am free of all synthetic medication. I take a variety of supplements and have made vast changes to my diet.

Don't get me wrong. I am by no means cured. But I do cope! Rather well at that!

It was also himself who asked why I was not trading as a herbalist. One of the key parts I have played in the past is that of an herbalist. I know the subject back to front.

I told him how EU law suggested I needed a formal qualification. So he asked "why not get one then". Frankly I had no answer to this.

I went on to study Phytotherapy at degree level, a higher diploma in massage therapy, Advanced aromatherapy and most recently cosmetology (the study of natural skincare).

I am now proud to say my chosen career is that of an holistic therapist. I am able to work at my own pace and have a good client base.

However, that was never going to be enough. Over many years I have formulated and produced my own skincare products. These have been given as gifts of used by myself.

It is now time to turn the hobby into a business.

I am launching my own range of organic, natural skincare. IT is called Merionwen and is a business I feel very passionate about. four years ago I never believed it was possible to achieve these things and live with illness.

I have proved that that is not the case. I shall make success of this and I hope everyone else who has lived with any sort of set back can take heart and see what can come to pass.

I am attempting to get Merionwen on it's feet with a crowdfunder pitch. There are a variety of splendid rewards for anyone who invests.

What could be better than organic, natural, spa quality skincare?
Well all deserve a little pampering...

You can find Merionwen here:

The Crowdfunder Pitch

www.merionwen.co.uk 

Facebook

Twitter

See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.

Shame

I remember sitting in my bedroom as a teenager, and realising how fortunate I was to have been born into this country. We weren't starving, like they were in Ethiopia. We weren't at war, like they were in some parts of the world. We always had plenty of clean, fresh water available, and always had food on the table. Most people had a roof over their head, and those who didn't had help available. We had councils who helped people, unions that helped workers, there were safety nets in place for nearly every eventuality you could think of. We may be struggling in our every day lives, but we had it made! I realised this as a teen, and my ambition became to help people world wide who weren't so fortunate to have been born into a country like this.

Unfortunately, I no longer believe we are fortunate. I feel shame. Total and utter shame, at what this country is doing.

How much of that remains? When I try and tell certain people about the difficulties of being sick or disabled in this country, I frequently get a response along the lines of "At least you're not starving in Ethiopia". Why is it more acceptable to starve here?

Are people really starving here? YES! 

The government has pretty much gone out of it's way to eliminate any form of income for people who are sick or disabled, and have made it very difficult to get by for those who are simply working class at the minimum wage end of the spectrum. If you weren't born with a silver spoon in your mouth they see you as scum, and we are to be treated as we deserve! 

Take my own example. I cannot claim Contributions Based Employment & Support Allowance (CB-ESA), because the DWP (Department for Work & Pensions) paid my NI (National Insurance) stamp last year. Their type of stamp does not count towards benefits, only towards your pension (should you be unlucky enough to live that long). I cannot claim Income Related ESA, because I am living with someone who earns over £8000pa (the threshold is somewhere around 7000). His outgoings are not taken into account. So, the fact that his outgoings are nearly equal to his income is irrelevant. He cannot afford to support me. As such, I am currently living off hand outs. They won't last forever! There is no point at which I can suddenly claim CB-ESA, as while I'm in this situation the DWP pays my NI, thus cancelling out the possibility indefinitely. It also seems that I will be unlikely to receive DLA; the DWP are putting off giving me a decision month after month. My suspicion is that they are waiting for PIP (Personal Independence Payment); under which I definitely will not qualify. There are no other benefits available to me, no safety net to catch me, nothing. I'm not the only one, there are hundreds, probably thousands of people in this situation across the country. The inevitable is that these people will become homeless, probably starving to death.

DLA was never intended for people to live on. It was intended to be some money that helped disabled people live a normal life contributing to the community. Something those who designed PIP seem to have forgotten, despite it's all encompassing name: "Personal Independence". They have made it virtually impossible for people who are genuinely disabled, to claim. For example, one of the descriptors is that claimants be unable to walk 20m, where it used to be 50m. They have cut down the criteria similarly throughout the assessing process, and have taken out some things under which people used to qualify. They've introduced descriptors, suggesting it is now another tickbox computer based system, similar to that of ESA that assesses people.  So, unless you are wheelchair bound, and almost totally unable to do anything for yourself, you're unlikely to receive PIP. Genuinely disabled people will lose their DLA. For many this means losing their car; that is their ability to get to work. Similarly for some it's losing the money they use for public transport. For some it is money used to bring in respite carers. So many people will be very suddenly thrown into situations where life is totally unmanageable.

And yet suicide is illegal.

It isn't just DLA though, please do understand that. ESA has recently changed, making it more difficult to receive again. More changes are being brought in, in April too. At present, when you apply for ESA, if you are turned down you can appeal. You still receive some money (£70pw - the Assessment Rate) until your reconsideration, appeal, or tribunal are finished. The Assessment Rate is being scrapped. You will no longer be allowed to appeal straight away, but must have a mandatory reconsideration first. To be fair, many decisions are overturned at 'reconsidertion', BUT, the DWP has no time limit on how long their reconsideration's take; so people will be left without money indefinitely. They say that they will be processed as quickly as possible. 

No comment.

What happens when someone has no money? Probably first of all, they go hungry. The government has at least seen fit to open more food banks since they've been in power (that in itself shows us that they knew what they were doing to us); but the housebound and bedbound can't get to food banks! And what of those who have specific dietary requirements (I'm talking Coeliac, etc, not vegetarians)? The next thing that probably happens is being unable to pay the bills. The phone gets cut off, then the electricity and gas. Their landlord may be understanding to start with, but if they're sitting in his property not paying any rent, he's losing money, so at some point they get turfed out of their home. Homeless, starving, and ill or disabled. That's what our government is aiming for!

At the moment, most people can claim a Crisis Loan when they find themselves in that sort of situation (not I, due to the other half's income). So what's the government's next step? They're removing Crisis Loans too!

They're also removing Legal Aid for people going to tribunal over their ESA, DLA, or PIP, decisions. In case you're unaware, there is a long convoluted system involved here. If someone disagrees with the decision made on their application (which they usually do, since the DWP deliberately underestimates people's needs), they can appeal. The appeal goes through reconsideration, at which point it can be changed, but if it is not it goes to Tribunal. If they still disagree with the decision then they can take it to the Upper Tier Tribunal. At this level people really need legal advice, and preferably legal representation, if they want to stand a chance of winning their case (they put people through all of that, just for £90pw). And that legal advice will no longer be available; because the government don't want people to win! They don't want to spend their money on the plebs.

There's more. Much more. The so called "bed room tax" for example. I'm so sick of it. It has now got to the point where I think we'd all be better off in another country. If there was a country open to receiving us, I have no doubt that there would be a mass exodus of sick and disabled people from the UK.

I'm actually kind of surprised that there has been no attempt on the lives of any of the politicians involved with all of this change. Yes, by definition the sick and disabled would be unable to carry out such an act, but we're not the only ones who are totally incensed by it all.

I wonder whether they realise that they are backing everyone in to a corner. It's basically going to be a choice between a life of crime, a life on the streets begging, or suicide. All of which are illegal. I suspect it's the latter that they are waiting for, but I also suspect it's the life of crime that most will turn to.

If only they could talk

Last night I woke up with a shock when something very cold touched by nose. My head had slipped between the pillows, so my nose was the only part of me above bedding. Tinkerbell, one of my boyfriend's cats, was lying on my pillow with her nose touching mine. As I brought my hand up to stroke her she started purring enthusiastically, then turned her back on me when I returned my hand into the warmth of the bed.

Tinkerbell has somewhat of a reputation for being a difficult cat. The vets use big gloves to handle her, finding it amusing how feral she is with them. She's one of three cats. She spent her life growing up with two cats who were brother and sister, not from the same litter as herself. The two siblings always snuggled together. Tinkerbell was not allowed to join them. She was the loner.

When I joined the family I started talking to her with cat language. She responded immediately. My other half hadn't been aware of some of the nuances of what cat body language means. As such, no one had really 'talked' to Tinkerbell her entire life.

Last night she was trying to get close to me. Frequently, when my head is actually on the pillow, she will rest a paw on me, or even curl herself around my head. As she turned her back on me last night I realised that all she wants is someone to curl up with. This 'outdoor', 'feral' cat, just wants to be loved. I realised that she'd felt alone for ten years.

And my heart melted.