Making the invisible visible

I'm here again plugging Greg and Linda Crowhurst and their videos on Youtube. Their two week diary of a carer is over and now Greg is updating on a less frequent basis. This latest post is a plea to all of us in the ME community to go to Greg's video Making the Invisible Visible and to post a video reply. The aim is to get everyone talking about the wrongs done to ME suffers all over the world but particularly in the UK. He wants to get his videos the most watched on Youtube and then maybe the rest of the world will start to take notice.

Please go there, watch and if you have ME post, preferably by video or failing that in words. It would be great to be a part of the movement which finally outs this grave injustice.

If you are bored by all this talk of ME and righting these wrongs, just imagine how we suffers feel when we have had the illness for decade upon decade and nothing is done to try to treat us or even begin to understand our illness. I rarely get comments on these topics here but this time I'd be grateful if you would take the trouble to comment elsewhere.

Please, please contribute to this fight. ME sufferers need all the help we can get.

This week, mostly.....

I'm reading.....

Skewed by Martin J Walker. This is a must-read book for anyone who wants to know the background to the stronghold the psychiatric lobby have over the treatment of ME in this country. It also gives an insight into why the politicians are not that interested either and postulates that this illness is actually man-made and is caused by modern chemicals. I read it in a single sitting and ended up enraged but enlightened as to what all this is really about. Knowledge is power so read it and join those who are fighting to overturn this gross injustice.

I'm eating.....

Mushrooms. I bought a 3kg box of field mushrooms last week for the princely sum of £1. Since then it has been mushrooms with everything and friends and neighbours shared in the bounty too.

I'm watching.....

the leaves on the old oaks opposite my house start to turn brown. They are still 95% green however and will remain on the tree until almost Christmas, testament to the longer growing season we now have. 21 years ago, when I moved here, they would all be gone by the end of November.

Some good news

to start the week.

They say things happen in threes, so here are my three for this week:

1. Stepdaughter No 2 has announced her pregnancy. Now that the rest of the world knows I can post about it here. They are about to move into a brand new house any day now so the old adage 'New house, New baby' is proving correct. Expect lots of oohs, ahhs and cooing by next summer.

2. We are off to Denmark in a month's time. We're going for a long weekend to help celebrate our good friend Ms A's special birthday. Ms A lived next door for some months whilst she lived over here and became firm friends. Now we're off to see her neck of the woods.

3. I have saved the best 'til last. A planned trip to take my Mother to the eye clinic has been postponed as she has hurt her leg and has been advised not to go. I can stay here ALL week now. Woo Hoo.

More problems

Blogger sucks! I have tried all day to get a decent post on and now I'm having all the problems everyone else had and I never got. It must be my lucky day.

Fog in the office

Well yesterday I managed to get this wireless router thingy working. Then I set about doing the laptop to run on broadband as well. Not so easy so I plugged in the printer to print out the destructions (yes really they were!). Having got that far, WH arrived home and wanted to print out the British Standard for floors or something as he had had an altercation with the building inspector.

I plugged in the printer again and do you think I could get it work? Not a chance. It didn't seem to recognise the printer at all. Tried everything. Then I clicked the wrong thing and totally uninstalled the printer. AAAAAHHHH

All the while WH was pacing up and down and it was by now 10pm. He thought he'd go home to his place so left me to it saying he would be back this morning if he needed them very urgently.

I looked for the intallation disc. All the others were there together but no sign of this one. I then realised I could get the software on the Net. So at this point, by then midnight, I went to bed and gave up. This morning I downloaded the software,made a new installation disc, did the whole installation wizard thing, starting and restarting the printer about 6 times. Got to the bit where it said plug in the printer with a lovely picture.

I had the plug in the wrong hole.

That's all it was.

I finished the installation and did all the clicky bits and I now have a lovely wonderful, working printer and a complete set of Part L Regs printed and another about some flooring stuff, and the u value ready reckoner and the whole lot, all stapled together and in a lovely pile for WH who no longer needs them until next week. He's doing doors today instead.

Only took me about 6 hours in total.

I just have to find out what else I have uninstalled as the Wizard did lots of other stuff itself (my webcam for instance?)

I disappear groaning into the background..........

This week, mostly

I'm in bed, exhausted.

Not my normal type of post under this title I admit, but I have the energy for nothing more. The last 6 weeks of trips to and from Birmingham have taken their toll and I am trying to build up strength for the next one. True to form at a time of overexertion my ME has shown it's true colours. I can push myself for so long, run on adrenaline, but without regular rest and being able to pace myself, the crash was inevitable.

This is a common, almost usual, response for those suffering this dreadful illness. Why then does the medical establishment keep pushing Graded Exercise Therapy?? Do they want us to remain sick, perhaps so they can pump us full of antidepressants and earn their kudos from the drug companies? After all if a causative agent and appropriate treatment was found, the treatment time would be finite and so would the amount of drugs needed. The multi-nationals wouldn't like that would they??

What is going on in the UK?

The number of people living with ME in the UK is now around 240,000 according to Dowsett and Richardson, 1999.

The number of people living with HIV in the UK is now around 58,300 according to a Health Protection Agency report 2005.

Who gets the publicity and the government funded research?

"If you have to prove you are ill, you can't get well." Nortin Hadler

Just a reminder

to watch Greg Crowhurst's video diaries on Youtube, running for another 4 days. Caring for a wife who has severe ME is hard enough, trying to fight the system in order to get recognition, research and treatment for this illness is a whole other full-time occupation.

Please give him all the support you can and send the link to everyone you know and get this scandal the attention it deserves.

Post script.

I have just watched today's video, A Video Response to NICE by Linda Crowhurst, a severe sufferer and Greg's wife. It is compulsive viewing, so brave of her under such difficulties. Go there and watch it please.

EMI

No not the record company, it stands for Elderly Mentally Infirm.

I am shell shocked, dumstruck, tearful and exhausted. My ME symptoms have gone back about 6 years and I am not sleeping at all.

I am learning about EMI fast. It seems my Mother may be just suffering with Mental Illness. Either that or she has just turned plain nasty in her 86th year, I have just had the visit from Hell. Previous visits were no picnic but this has taken me totally unawares.

And that is what EMI is like. It creeps up and bites you on the bum when you least expect it. And boy is that bite painful.

Playing Deric again

I'm Deric Longden's alter ego again. This week, the fourth in row, I am up in the Midlands 'sorting Mother out'. Well trying to anyway. She has now been in rehab for a week following 2 weeks of respite care. The best of it is, I am sicker than she is, and what is more, her Carer told me that herself!

Today we had the weekly review. A sombre gathering, with not one but 2 African social workers, apparently this area is importing them to solve their staff shortage. The Carer was there too as was the Occupational Therapist. We` sat for an hour and reviewed progress, or lack of it in this case. Sure the patient can walk, dress, eat and do everything expected, but does she want to? No. Why bother when you can be waited on hand, foot and finger? 'Of course I can do it all normally, I'm just having a rest.'

Unfortunately this didn't wash with those who decide. Going Home is only allowed if there is help and supervision. You could cut the air with a knife. I was asked to comment. I said my comments would be ignored so it was pointless. I did however pass on a comment from my sister over the pond, 'Take all the help you can get'.

That was the decider. The assembled party collectively took a large intake of breath.

'Well if she says so I suppose I'd better have it then.'

Relief all round. The problem is now, they're not sure when they can get the help.

Greg Crowhurst - A man with a mission

I have been watching a series of video diaries made by Greg Crowhurst. He is posting them on YouTube and is showing for 2 weeks what it is like caring for his wife Linda who has severe ME. Today we have reached day 6. I find them extremely moving and am glued. This chap is the only one I have ever seen truly put the case for proper research and treatment for ME.

His presentation to the Gibson Enquiry was brilliant. It should have been on primetime TV. He should be on the News, in the newspapers and on the radio. Of course he wouldn't have the time being as he is a full-time carer to his wife and has been for many years.

I so wish I was in a position to publicise this more. This is my attempt here. Please watch these videos and get others to watch them too. The scandal of the treatment of ME sufferers in this country, particularly those with the most debilitating form, those 25% who suffer with severe ME, must not be allowed to continue.

Please support him in what ever way you can.

Faster than Kudzu

I've been spending some time at Trashionista. Not just because my good friend Di is one of the editors, not just because they have been giving away free books but just because, well I like it there. I wish I could read books like they were going out of fashion, WH thinks I do, (well I buy them anyhow) but they read far more in a week than I read in a month! One consequence of this is the ever increasing pile on my bookshelves, currently I have 15 waiting to be read.

One of the things I really liked about Trashionista was a mention of Joshilyn Jackson, erstwhile writer of southern novels, blogger extraordinaire and just general madcap person. If you want a good, old-fashioned, side-spliting laugh and have plenty of tissues to hand to mop up the tears of laughter which I guarantee will stream from your eyes, just read this tale of her arrest. And the two succeeding parts to the story. You will not be disappointed. I wonder if she ever thought of doing stand-up comedy? This is funnier than most comedians ever get.

I am currently reading her novel Between Georgia and loving every minute of it. Funny yes, but with a serious side. I can thorougly recommend it.

Why the straightjacket??

Some people have asked me why I call this blog Life in the Straightjacket. If you read the previous post about government funding for ME research you might have clue.

I have had ME for almost 14 years, no treatment has been forthcoming except CBT (cognitive behavioural therapy) and GET (graded excercise therapy) both of which have been shown in numerous studies not to work and at worst to be positively detrimental to the condition. The accepted practice is to treat the symptoms not the root cause of the disorder.

This is why I feel I am in a straightjacket, one made by the Medical Establishment and fastened by Prof Simon Wessley and his ilk, psychiatrists who refuse to accept the findings of the researchers the world over and prevent proper recognition and help for us suffers.

I am hoping and waiting for the day that all of us stuck in the straightjacket can shake if off and strike out for pastures new but I fear it will be a very long wait.

Balderdash

So the British Government is to invest £1.9m in a cure for baldness in the hope of attracting voters. This is in order to boost the confidence of men whose lives have been shattered by hair-loss.

One sufferer said: "Balding made me feel aged. Looking in the mirror before going out, or standing up in a meeting was difficult." Well how nice for them, at least these folically challenged males can now look forward to an end to their suffering. Figures suggest at least 40% of men over the age of 50 suffer.

The Times says:

Similar doubts can afflict the most apparently confident of men. Shane Warne, the Australian cricketer and Graham Gooch, the former England captain, are among those who have apparently benefited from such treatment. /span>

Pity the poor ME sufferers then, they only represent about 1-2% of the population (Shepherd, C. (1999) Living with M.E. p.9. ) and in the ratio of 1 male to every 3 females. No wonder the Government doesn't want to spend money on that research. No wonder we still see no end to our suffering. There are not enough of us. No matter that of these sufferers approximately 6% recover after 3 years, 50% are not able to work and 33% are unable to perform any type of physical activity. (Wilson, A. et al. (1994) 'Longitudinal study of outcome of chronic fatigue syndrome,' British Medical Journal, 308, p.756-9.) Obviously there are not enough of us suffering, as an inability to walk, work, stand up in meetings, go out or play cricket is insignificant when compared with the distress of all those middle aged males who are traumatised by being bald, let alone our distress at what we look like in the mirror.

The research into baldness is a great stride for Britain in the biotechnology stakes, it is hoped that Britain will become a world leader in cures and this could bring in a possible £1bn a year in trade.

I wonder how much money could be added to the British economy if the 250,000 people (Early Day Motion 260) currently estimated to be suffering with this disease could return to a 'normal' life, be able to work and to live benefit and help free as they formerly did. Perhaps one of these people could find a cure for baldness or even captain England at cricket.

Lost for Words

A close friend yesterday remarked how my life is turning into a saga resembling that of a Deric Longden book. Well thank you Di. but actually she is right. Lost for Words is about right just now. My Mother isn't dotty or even charming like Deric's but there are a lot of similarities. I have spent a whole week now trying to sort out living arrangements/care/help for my mother, most of it done from the end of my telephone. I am all talked out as they say. I am also more clued up about pensions, care homes, costs of maintaining care and how to make a successful choice of accommodation. Also similar to Deric's saga is that my mother doesn't know any of it. Not in this case because she is not capable but rather because mentally she is too capable and choices might have to be made at some later stage and I want to be prepared and know what I am talking about without unknowingly having the wool pulled over my eyes.

Right now she is geared up for six weeks rehabilitation. Today I have to talk to her Social Worker along with her and this will involve a 3 -4 hour drive depending on traffic, meeting in the emergency care home where she is living right now and then trying to persuade her that a move to another care home, albeit short term, really is her best option. If she agrees (and to be fair she looks quite likely too at last, although at the start of the week it seemed she would refuse) it will be the first thing has agreed to this week. I have already been told that if she doesn't she will be 'booted out' next week and more or less left to her own devices as she has refused all forms of help so far.

In the last 48 hours I have had a panic attack, 2 severe headaches and forgotten where I was supposed to be. I have not like Deric lost my car but it has been a close run thing. Right now I am lost for words as I keep replaying how I will be trying to coax and cajole and justify all the while keeping an eye out for hidden agendas and trips-ups and also trying to persuade an 87 year old that she has to listen to a young African man and that he really does have her best interests at heart as do we all. Good thing WH is doing the driving, as I can't remember at all where the care home is or how we got there.

This week, mostly.....

I'm reading.....

not a lot. My brain is completely dead right now and other than doing the daily Sudoku in the Times I am not reading at all. For pleasure that is. What I am reading is reams and reams relating to care homes, care of the elderly and how to obtain help for the elderly. My mother is at present in respite care and who knows where she will go next?

I'm eating.....

anything which doesn't require much preparation. Spending upwards of 5 hours on the phone most days, trying to sort my Mother out, is not conducive to cooking elaborate dishes. Yesterday ready-cooked chickens were two for the price of one at the local supermarket. No need to say what we ate for dinner last night!

I'm wearing.....

my new fluffy ankle boots/ slippers. Made of 3 inch fun-fur, they come in a delightful shade of bright turquoise and Nelson is frightened of them. Don't half keep my toes warm though!

Over at Trashionista

BAFAB will be fab!

Diane Shipley and Keris Stainton, co-editors of Trashionista, the books news and reviews site whose motto proclaims, “We read books like they’re going out of fashion!” are excited to announce Trashionista’s participation in this October’s Buy a Friend a Book Week (BAFAB).

From October 2-6 2006 on www.trashionista.com, you’ll find exclusive guest blogs from best-selling chick-lit authors (stop by to find out who!), interviews, and seven (and counting…) book giveaways. Plus, find out what books we’d buy for our friends, and why!

It goes without saying (doesn’t it?!) that of course you’ll also find all of the usual great Trashionista content: book reviews (focusing on women’s fiction, chick-lit and memoir) and book news (focusing on anything hot or controversial in the book world in general) all delivered with intelligence and a sense of fun.

Please stop by from October 1-5 for BAFAB week, Trashionista style- and help make it a week to remember!


More about Trashionista:
Trashionista gets to grips with the wonderful world of female fiction. We take an unbiased look at beach reads, bestsellers, new releases and old favourites -and we actually read the books before writing about them. At Trashionista we don't believe that 'chick lit' is a dirty word - but if a book is trash, we'll let you know!
Trashionista is a Shiny Media (www.shinymedia.com) website created by Gemma Cartwright and edited by Diane Shipley and Keris Stainton. To contact the editors email here

OK so I didn't write this, I cut and pasted what Di sent me. But hey, give them a break and go and look at Trashionista right now!!

NICE Clinical Practice Guidelines

My favourite campaining organisation Invest in ME has publicised news of these Guidelines which are at present in draft format and the public are allowed to comment.

Here

In order to formulate these guidelines 399 questionaires were sent out and 219 returned (page 50), 119 from patients, 63 from healthcare proffessionals, 29 from carers, 8 unknowns. Of the 180 who didn't reply nothing is known of those categories of people. There are however some very pertinent comments given as examples (pages52-54). Of 6 published comments 4 refered to the difficulty of the task involved for people with ME. One comment refered to over 450 pages of accompanying notes which needed to be read in order to complete the task.

And that's the point isn't it?? People with ME need to be heard and yet the very instrument which purports to be helping them is geared up to preventing those people from giving their experiences and opinions.

No wonder the psychiatrists and other health care professionals are having a laugh at our expense and disregarding anything we say. Once again the main focus of these guidelines are Cognitive Behavioural Therapy and Graded Excercise Therapy.

Professor Malcolm Hooper stated in 2005 in a document entitled THE GROUP ON SCIENTIFIC RESEARCH INTO MYALGIC ENCEPHALOMYELITIS , (THE GIBSON PARLIAMENTARY INQUIRY) , CONCERNS ABOUT A COMMERCIAL CONFLICT OF INTEREST UNDERLYING THE DWP HANDBOOK ENTRY ON MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME :

as far as ME/CFS is concerned (and in general), the proposed psychiatric “rehabilitation” regimes ie. CBT (cognitive behavioural therapy) and GET (graded exercise therapy) that are to be imposed on UK claimants are poorly researched; they have already been shown to be of no lasting benefit, and they may be harmful: in four surveys of a total of 3,074 ME/CFS patients, 77% of those who had tried CBT found that it either made no difference or made things worse, and of the 1,467 patients who had tried a graded exercise “rehabilitation” regime, 48% found it to be the most harmful intervention.

For this reason I am reading the whole of these proposed Guidelines, all 269 pages of them along with a quick scan of the 646 pages of appendices.

Comment, you bet I will.

What a start

to the month of October. Someone let off a load of bangers after the pub shut and the cats went mental. Then we had a full blown thunder storm at 4 am for a couple of hours, thunder, lightening, torrential rain, hail, the whole works. The cats all had a total breakdown then, especially when the hail-stones, as big as bullets, were rolling off the roof. Nelson disappeared. Misty tried to sleep down my bed. Goggins had come upstairs after the firework episode for the first time in about twelve years and slept on my bed, jammed up against my hip for comfort, he then tried to sleep on top of me, only retreating to the floor after Misty had sniffed him savagely several times. In the midst of all this I start developing the symptoms of the local bug which seems to be affecting half of the village. Needless to say I didn't get much sleep.

This evening I collected WH from the station. He had been to a farewell party in London for several mates who are all moving to random points of the compass. Unbeknown to me he'd booked into the Holiday Inn last night.

'Waste of time, I was sick all night, must be that bug going round'

I wasn't symapthetic at all.