Wednesday 28 November 2012

Social Services Stole my M.E. Child

Sonia Poulton is searching for a family.

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

If you know such a family, please contact me and I will pass on your details to her. Hopefully she will give me a better way of contacting her yourself in the near future, but for now, that's it.

Sonia, in case you are unfamiliar with her work is a UK journalist who has been working extremely hard to bring the suffering of people with M.E. to light. She totally gets it, which is very rare for anyone who doesn't have M.E., and she has the voice, and is in the position, to do something about it. An absolutely awesome lady. She's also been working hard on illuminating the problems with the benefits system. She doesn't have to do either of these things, but has chosen to. So, if you can help with her search, please do.

Her full post (on Facebook) was actually as follows:

I have a problem and I'm adhering to the school of thought that says if I share it then I should also halve the burden it is causing me, so here goes...

I NEED A FAMILY. Not just any old family, mind, this family needs to have experienced the nightmare of what it means to have their child diagnosed by a medical doctor as having ME, taken from the family home as part of Child Protection order. The child then needs to have been returned to the family home because it was WRONG for Social Services to have taken the child in the first place.

That precise requirement is what I desperately need in order to fulfil the demands of producers on a TV news report I am working on.

Some people are not happy that we need that type of extreme example - and I understand why - but in order for the public to 'get it' the media frequently has to SHOUT an issue. This is one of those times.

This report is designed to shriek so loudly that those watching it will have no alternative but to wake up. It will not portray ME as only worthy if it is extreme but it needs to shock people out of the stupour of believing it's not a serious illness. It is. It can, and has, killed. How much more serious does it need to be?

So far I have been unable to get the family we need. I have other families, with less troubles, but I need others.

It's not that these families don't exist - sadly they do - but they have been filled with so much fear and anxiety about having their child taken away that they are scared to speak up about it, even anonymously. Which is super sad, really, because it means that they are unable to help those who are enduring that misery right now.

So that's my very long way of explaining I have a problem and if anyone can help in any way, either by knowing a family of this description or re-posting this status in any relevant places, I would be grateful.

We need to be able to show the UK how people with ME are being treated and unless I can get the example required then I fear it will not happen. Thank you.

Tuesday 27 November 2012

The Funky Orchard

There are many people with M.E. who are not in receipt of benefits. There are different reasons, though the most common is that M.E. is not a well understood illness. When someone writes on their ESA or DLA form, or even their blue badge application that they have M.E., the assessor doesn't understand what that means. Unless the applicant has had help from someone who understands both the benefits system and M.E., they are usually screwed. As such they are turning to alternative measures to try and scrape enough up to live by. The Funky Orchard is just one such example, I will let her tell you her story herself though, as it is a little different.

I have just set up an online clothing business called The Funky Orchard.

I could not receive ESA because my husbands earnings were too high. The DWP were supposed to be crediting my NI, but did not. So when my husband left, and I reapplied for ESA properly, I could not get it due to the fact that I did not have enough NI.

At first I was very scared. I was living on my savings, extremely aware that they would run out within a year or two. I didn't know what to do, or who to ask for advice. Then one day I was looking for a specific item of clothing online and suddenly thought "This is so hard to find, yet so many people would like it. Why don't I sell them myself!?!"

Soooo, I have thrown my savings into buying stock. Beautiful stock.

I aim to stock the clothing that is hard to find on the high street, yet so many people seem to yearn after. Alternative styles; goth, punk, hippy. In particular I am hoping to stock more larger sizes, as plus sized clothing is even harder to find.

At the moment I have some absolutely awesome items in stock. For example, we have Sari Skirts; skirts that have been made from sari fabric. They are in a variety of colours, as you can see from the picture of our stock cupboard. They are double layered, the fabric behind being a totally different colour to the fabric in front, giving an amazing iridescent affect when the skirt moves.


We also have some fantastic medieval styled tunics. They're perfect for people who like the pagan, or goth look, can be worn as a top or a dress, and for either casual or smart occasions.




I have both a website and a Facebook page. So please, come and 'like' us on Facebook, and have a look around the website :)

I need to clarify a few things from the beginning of her statement. NI = National Insurance. She was unable to claim Employment & Support Allowance Income Based because it is means tested; her savings were just above the threshold allowed. As such her only option was to claim Employment & Support Allowance Contributions Based, but because the DWP had stopped paying her National Insurance Credits without informing her, she could not claim this either. She can now pay NI herself for six months, and try to claim again. Meanwhile, hopefully The Funky Orchard will provide enough to live on. So please! Please support her; spread the word, and see if there are any items that you would like to buy for yourself or for someone else with Christmas coming.

Thursday 15 November 2012

Dating Disabled

Ok, I am sick and tired of the spam messages I keep getting; comments people try to leave on my blog with a link to their own website in the hope that it'll lead to an increase in visitors. Sorry folks, I never let such comments through. 

However, there is one I'd like to make a post for. Today someone left a comment saying that they would link to my blog from their website ... I'm not naive enough to believe that they will ... but their site is a dating website for the disabled. And you know what, that's something I think is useful and important to my readers.

I signed up to a dating website a couple of years ago, and the experience was absolutely horrific. If I did not write on my profile that I am disabled, when the people I talked to found out that I am, they accused me of leading them on. If I did write on my profile that I am disabled, I received messages from people either telling me I had no right to be on a dating website, or even creepier, from people who wanted to know all the details of my disability. It was no win situation.

I can see pros and cons to the concept of a disabled dating website. From personal experience I can tell you that two disabled people in a relationship together can be twice as difficult as one disabled, and one able bodied. On the other hand though, who understands disability better than anyone else? Disabled people! My disabled friends are the most supportive. They understand. They relate. So yes, I advocate disabled dating sites. 

I would give one word of warning though. When you tell people up front that you are disabled, you are telling them that you are vulnerable. There are people who prey on the vulnerable. There are those who 'like the idea' of caring for someone, not always with the best intentions. Always tell someone where you are going, and who with. Always get pictures of the people you are going to see before you see them, share these with someone. Always take your phone, and keep it turned on; answer it if someone phones. Have a safeword that you can slip into conversation with a friend if you need help. That safeword can save your life.

This is the website that left a comment on my blog: YourDisabledDating.com

And here are a few more:
Dating4Disabled
Disabled Passions
Disability Match
Whispers4u

Thursday 8 November 2012

How to wreck someone's life

I think most of my readers will agree that M.E. is real. You may not all agree over whether it is psychological or physiological. However, NICE guidelines, and the WHO agree that it is a neurological condition. The NHS is supposed to follow the International Consensus Criteria in diagnosis and treatment of M.E.. This is why the following story breaks my heart. I've spent a little time talking with this gentleman over the last few days, but there is no way I'd be able to do him justice. As such the following is his story told his way.

I've had a wide range of symptoms that got diagnosed as ME back in the mid 80s. Symptoms were more acute then, and - bar a short stay in a psych ward when the doctors could not find a cause - I managed for years, with pacing, though I was never well enough for a job other than volunteer work. About 3 years ago symptoms started to get crippling, with severe unexplained chest and abdominal pains after even moderate exertion, so I went back to the NHS for help, but after gastro exams and blood tests came up with nothing, I was given no option but to see psychiatrists, who would not listen to my reasoning or read references that might point the way to more specific tests, but just chose to brand me as a hypochondriac.
Once given this label, even my friends stopped believing in me, and got fed up with regular trips to A&E where I was scolded for my pain rather than having it properly researched as I begged to be done. In the end, when chest pain got so bad I could only roll about in agony, I was admitted into the psych system 'for observation', with the promise that if they could not help they would pass me on to an ME specialist.
They broke this promise and decided to section me in a ridiculous effort to cure 'hypochondria' with antipsychotics. As by this time, I had split up with my girlfriend, and the council had declared my own house unfit, I had nowhere to go, so did not oppose the section. That was nearly 2y ago. My family have been gradually getting my house into what the council deems fit condition, but the NHS has only stood by waiting to discharge me rather than make any effort over my health, so when I am finally at home, I will be completely out of the system and have nowhere to turn for medical help, after having my life totally wrecked by the psychiatrists, on top of my still worsening ME.

My sister is a journalist and did put some pressure on the PCT and GP practice and local MPs, but this only succeeded in getting me moved from the acute psych lock in facility to this open 'recovery' unit.  Nobody is able to fight the NHS and make them seriously look for what is making people ill, and doctors are actually offended when you ask that they should do so.

My life has been wrecked by the system and circumstances several times over, and each time I've dared to think things were beginning to look up again, I've had all my hopes and dreams dashed.

Please understand that he has told this story time and time again. He has become a dab hand at keeping it concise. As such the story as he tells it does not portray nearly half the sadness, emotion, and loss, the desperation and sense of betrayal that has been going on for decades.

He has been dumped in a psych ward, and basically forgotten. Sure, he has food, water, and a roof over his head. The basic rights promised to animals; so the RSPCA would have no problem with this. Well, I do. I have a problem with someone being treated so badly that they go in to the NHS in a bad condition, and 20+ years later they are in a worse condition. 

M.E. is not a progressive condition. It is not an illness that you expect to get worse. It can get worse, but it is not taken for granted that it will. When under full time hospital care you would kind of expect for patients to improve. Yet he has not improved, he's worse. He's been treated as if they are simply waiting for him to ... what ... die? Miraculously stop being a 'hypochrondriac'? Why is he in this mess of a system when their attempts at treating him have failed? Is it totally impossible for them to consider that they were wrong, that he may not be a hypochondriac and actually has an illness that needs proper treatment? Don't be mistaken, naively believing that being in a psychiatric hospital a patient is regularly seen by doctor's, nurses, and therapists. The truth is that one only sees such medical personal at rare case conferences.

In the 80s, when he first became ill, the understanding of M.E. was very different. When the guidelines changed, why was his treatment not changed? In over twenty years, why has he never had full body MRIs, why has he not been tested for systemic inflammation as per Fibromyalgia? Why has he been abandoned? It's hardly surprising that he's depressed.

I know he's not the only one. I consider myself lucky that I was left to rot in my bed when my condition was so severe. One of my best friends, last year, was admitted to hospital for five months for treatment of M.E.. Her ward too, was a psych ward. She too received no treatment. I'm glad she was released. While in hospital she lost her accomodation, her cat, her carer. So she was released into an unfamiliar world, with no help. I was too far away, and at the time, too ill. She came out of the hospital malnourished. I can't help wondering if this other friend of mine is also malnourished? How does the medical profession expect people's bodies to recover when malnourished?

It fills me with sadness. It is so frustrating that I cannot help him. All I can think to do is raise awareness of this man's plight.

Frustrations of M.E.

When I asked people to share their frustrations of M.E. one of my friends said to me that her whole life is a frustration, that I can share some pieces from her blog to illustrate how difficult it can be.


Still not found my mojo, am teetering on tearful at times. This mind-numbing continual bombardment of pain and exhaustion has left me feeling decidedly flat. Devoid of any other feeling.  Not depressed, not elated, not anything.

I want to say stuff, I want to post on facebook, or comment on stuff, but on the whole I know what I want to say but then can't be bothered to finish, or can't quite decide how to say it, so I'm just like "what the heck I can't be arsed" and deleting it.

And now I am going to finish as I can't be bothered to write anymore. My body and brain are, whatever, I don't even know what I was going to say so I can't (oh god that's it I'm lost for words).................

~ o ~ <<< 0 >>> ~ o ~



Well another week has passed. A week of occasional social activities, followed by wallops of payback and pain. A week of sleepless nights followed by two nights of successful slumber (which strangely has left me feeling more sleepy during the day).

This is the normal routine now. Just trying to have a life, to know that you are going to have to store up reserves for a simple trip out for a couple of hours and know that you'll still be left owing after. To know that if you manage one type of pain, you can bet that another type of pain will be ready to come bite you on the arse. To be sure that the more tired you are, the more likely it is that you will not be able to sleep a wink, like kicking someone when they are already on the floor. This is life with ME, it's a constant robbing of Peter to pay Paul.....

So here is the point where I was going to write about the positive things in my life. They are definitely still there, just right at this minute I have not got the energy to put them into words. I am sooooo sleepy, and feeling nauseous and my back is hurting again. So I am going to post this right now, and perhaps when I've had some more sleep, I will feel like being positive again.....

~ o ~ <<< 0 >>> ~ o ~


Oh how the weeks are flying by in a blur. Literally. I can barely remember what I was doing yesterday, and trying to recall last week is like trying to look at an out-of-focus picture - you can just about see a vague outline of something or other, but you're not sure what it is, but it has a familiar colour to it that invokes some memory or other that you just can't put your finger on.

I have been trying to keep a diary. This is for various purposes, one being to try to remind me what I've been up to, how I've been feeling, how many good or bad days I have.  What, however it has been mainly illustrating to me, is how many things I forget. It is the most common word in my diary. Here's just a selection for you:-

Jan 15th (day one): Forgot to write diary.... (!!!!!)
Jan 16th: Forgot to write diary.
Jan 17th: Got GP to fill in the form for hospital which I forgot about the last time I saw her. Forgot to ask for a sample pot though. / 8pm started to prepare casserole for tomorrow, but wasn't able to finish it as I had forgotten that I'd just taken a sleeping tablet.
Jan 18th:  Carried urine sample around the house so I wouldn't forget to take it to pre-op appointment. Remembered to take it with me. Left it in the car.
Jan 19th: Forgot to write diary.
Jan 20th:  Forgot to take my morning tablets, remembered in the afternoon.
Jan 21st: Forgot to take morning tablets, remembered after lunch.
Jan 22nd: Forgot to take morning tablets, remembered them about lunchtime, then forgot to take them again. Managed to have them at teatime.
Jan 23rd: Forgot to ring grandma, remembered at 10pm. Then realised I had forgot to ring DWP and the housing association as well.
Jan 25th: forgot to write diary
Jan 27th: forgot to write diary
Jan 28th: forgot to write diary
Jan 29th: tried to recall Friday and Saturday as hadn't remembered to write diary, but memory vague. Can't remember......

Well you get the gist of it. I could go on. It does go on. Much the same. In fact this very week (now I have started looking) I realise that since last Sunday, I only managed to remember to write my diary once, in the middle of the night on Thursday. I couldn't even remember enough to fill in any of the intervening days, apart from Monday morning, which I can remember clearly as I was supposed to be going in for surgery which was cancelled at the last minute.

So as you can tell, I have a memory problem. I am only 43. My life as it now has become consists of one big blur of stuff that I have trouble even recalling half the time.  And I can't even remember to write my diary to remind myself of the things I can't remember.

I will say goodbye for now, I will try to write again soon, but I might well forget to do that as well.