Cognitive Disconnect

I just had to post a link to Dominique's latest, rather genius post, 'A Play : Cognitive Disconnect'. It really shows what conversation is like for someone with ME ... very much what it's like for me almost every day right now!

I have the advantage that Anna is awesome at reading my mind / playing charades, and can usually guess what I'm trying to say almost straight away. I really feel for people who don't have someone to do that. It's especially helpful when she's trying to translate for someone else what I'm trying to say to them! I really needed this little bit of light relief today! Am so grateful I was able to read online for a few minutes this evening!

Of course it's a serious issue too, much as those of us who suffer from these kinds of cognitive issues make light of it. The ability to communicate is so vital for a human being - and when it's compromised, it makes life very difficult, very confusing, occasionally and potentially dangerous, and certainly very embarrassing at times!

A small snippet of Dominiques post follows ... you'll have to click through to her blog to read the rest! ;)

BOB:  “Are you ready?” ME:  “Yes” BOB:  “So where do you need to go?” ME:  “You know.  That place with all the stores in one place?” BOB:  “The Mall?” ME:  “Yeah!  That’s it! I need to go to, um that store across from that burger place we like … next to um Marshalls?  I think?” BOB:  “Are you talking about Ross’s? ME:  “Yup” (sigh) BOB:  “What do you need?” ME:  “Sunglasses.” BOB:  “Do you know what kind?” ME:  “Yeah.  Progressive. No profective. Dang. Um … the ones that don’t let the light go through the lenses.  The light bounces off the lenses.  I can’t remember what their called.” BOB:  “Uh, I have no clue what you’re talking about.”

Read more -------->>

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Cognitive Disconnect

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'Voices From The Shadows' Trailer

One of the best books I've read, in terms of really expressing what life is like for people with severe ME, is Lost Voices From a Hidden Illness, which tells the stories of many different people with ME, & their friends, families, and carers. It's beautifully made, looking very much like a coffee table book, illustrated with images of those telling the stories - each picture telling as much of a story as the actual text. It was produced in conjunction with Invest in ME, one of the leading UK charities for ME. If you have ME, or care for someone who has, I highly recommend investing in a copy of this book and passing it around to friends and family to help them understand more about what you're going through!

I found out this week that coming soon is a 'film sequel' to Lost Voices - Voices From The Shadows. I wanted to share the trailer with you here. I'm quite excited about this film, and have high hopes that they will yet again produce a powerful tool for ME advocacy and awareness!

Voices from the Shadows Trailer from Josh on Vimeo.

Isophia.com describes the film in the following way :

‘Voices from the Shadows’ (is) a documentary bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century.

Hidden away in darkened silent rooms for years, even decades, men, women and children are suffering a vicious injustice. Although shockingly ill, many are disbelieved, blamed and suffer medical neglect and even abuse by professionals. Deception and obfuscation have been used to deny the horror of their plight.

The isolation imposed by this severe illness means that the daily reality of these sufferers lives remains invisible. They are too ill to make their voices heard, and few professionals are willing to risk damaging their careers by speaking out to protect them.

Biomedical research has been stifled, so prejudice and misinformation have become widespread. Irrevocable harm is still being caused by inappropriate ‘treatment’. At last international research is highlighting this travesty, but in the UK it could be many, many years before change occurs. Meanwhile, lives are being destroyed and children and young people are particularly vulnerable.

This is a profoundly moving, poignant and disquieting film by two patient advocates/carers. It shows the love, enduring courage and determination of those who bravely strive to be heard as they fight for health and respect.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

'Voices From The Shadows' Trailer

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UK Disability Benefits Stress

So many of us in the UK are bracing ourselves for stress, upheaval and financial problems because of the new changes to the benefits system underway right now - even those of us who have already been awarded benefits aren't safe from these changes, as reassessments are being issued to many sick & disabled people. I wanted to write a post about it because it's such a huge issue for us all right now.

I've had major problems myself over the years with both claiming and keeping my benefits - for example, I had to go to appeal and then tribunal to get my Disability Living Allowance award, because the doctor the DWP sent out to see me didn't 'believe in ME' and lied about me, and was completely prejudiced against me on the medical form. (He went so far as to call my ME consultant the 'so called Professor'!!) Thankfully when I, at great pain to myself, appealed the decision and took my case to tribunal, it was overturned - and the DLA agency & the doctor in question came out looking a little silly! I've had a constant battle since then, though, just to keep the benefit, but I've been lucky enough to have found an advocate from a welfare rights department in our local government. How long I'll have that, I don't know, as their funding is under review (yet another knock to those who are genuinely sick!) - but it's been invaluable up until now!!

With the changes going on in the system, I like many others, are feeling the strain. I'm so afraid that my benefits will be reviewed and taken away - particularly because of how my illness is viewed by so many in the UK - and that I'll have yet another fight on my hands that I'm not well enough to fight. I think it's absolutely wrong what the government are doing ... and so many people and families are going to be so terribly affected by these decisions. I find it appalling that so few politicians stood up for the rights of disabled people in their constituencies while the debate was ongoing!!

It makes me so angry, too, that the people who falsely claim benefits are causing so many problems for people who are genuinely sick and disabled!


I wanted to highlight a service I've found which helps people in the UK with claiming disability benefits, and who fight for the rights of disabled people in this country, and write resources and news updates on what's going on in the UK benefits system : Benefits & Work.

There are two things I'd advise anyone applying for benefits or having problems getting the benefits they are entitled to, to do & that is to join Benefits & Work, and to find out if there is a welfare rights advocate service in your area. Finding an advocate is particularly important for people who are too sick to fill out their own forms. My advocate comes to my house and fills out the forms with me - and is able to accompany me to court hearings, etc, if needed. It's made a massive difference to my life having someone fighting my corner in this area!! If there is no specific welfare rights service near you, you can also go to the citizens advice bureau for help - but fair warning, they can sometimes be difficult to get an appointment with, as they're so busy and understaffed. Most CAB's aren't able to do home visits, either, which can be difficult for those of us who are severely ill.

Reader Question: What has your experience of the UK benefits system been like?

You can find help with applying for UK disability benefits at Benefits & Work!

You can follow Benefits & Work on Twitter to be notified when they release new articles & web content.

You can now find Benefits & Work on facebook - click like to follow them and to promote the cause to your friends & family. :)

You can also visit the Benefits & Work Forums to get help & information, & to discuss current issues with disability benefits with other members.


Below is a sample of the Benefits & Work newsletter, which keeps us up to date with things going on in the UK. You can sign up for it for free on their site.

A Sample of the May Edition of the Benefits & Work Newsletter


Forced labour scheme begins

As what is beginning to look more and more like a war on claimants hots up, last month saw the introduction of a forced labour scheme. (Members only article). 

Many thousands of claimants will be obliged to work for up to 30 hours a week for a month for no wage whatsoever. There is no limit to the number of times claimants can be forced onto the scheme. Those who fail to comply will lose their benefits for 13 weeks for a first offence and 26 weeks for a second offence.

The scheme is aimed at JSA claimants, but with so many people likely to fail the new work capability assessment, that may well include thousands of sick and disabled claimants who are deemed not to be trying hard enough to move into work.

The propaganda war is also becoming more vicious and ill-informed as the DWP feeds easy to misinterpret figures to the press and then looks the other way as hate-provoking misinformation fills the tabloids.

For the claimants on the front-line, there's also the shocking news of the lack of disabled access at many Atos medical centres, which most claimants are obliged to attend for their work capability assessment. An astonishing one in five centres don’t have disabled access and Atos lists just one dedicated disabled parking space for the use of around a million claimants a year.


Fighting Back


The government aren’t having it all their own way, however.  Below is a quick round-up of  anti-cuts actions over the coming month that you may want to support.


A national week of action against Atos is scheduled to begin on 9 May with a picnic and party in Triton Square, home of their head office, at 2pm.

On May 11 thousands of disabled people, their friends and families will be holding a march and lobbying parliament to protest at cuts to benefits and services.

The Justice for All campaign, which is fighting to save free legal advice, is holding a day of action on 3 June, which they are hoping members of the public will take part in. 


PRESS

Radio 4’s You and Yours programme is working on a report about the work capability assessment which may at least present a more honest picture of what is really happening to sick and disabled claimants.  As part of the feature they are hoping to talk an Atos health professional – anonymity assured.  If you are one of the Atos staff who read this newsletter, why not contact You and Yours in confidence?

You and Yours are also hoping to hear from people who have received a reassessment letter and are awaiting a medical or who are appealing an ESA decision.  More details here.

Elsewhere, a freelance journalist writing a piece on the forced migration from incapacity benefit to ESA for One in Four, a mental health service users magazine, is keen to hear from anyone who went through the Aberdeen or Burnley pilots or who is going through the reassessment process now.



New Resource for Professionals


Welfare rights expert Mark Perlic – who has provided free resources for this site in the past - is publishing an updated ninth edition of the invaluable DLA and AA caselaw pack in June of this year and is currently taking advance orders.  More details from this flyer.

Mark is also running DLA and AA case law training days in Birmingham and London in September and October of this year.  More details from Mark’s website.



Good News From the Forums


Finally, in spite of the all those bank holidays over the last  few weeks, we’ve still heard from a number of members with good news about their claims and appeals.

Double tribunal triumph as Atos medical report “wholly discredited”

“I came out of the Tribunal with 15 points for the ESA and an award of DLA Higher Rate Mobility and Middle Rate Care and I have to admit an immense feeling of euphoria!”

“Thanks to the information and help guides available on this fantastic site . . . the ATOS medical report was . . . wholly discredited.”


Support group and highest care DLA on initial claim

IB and ESA appeals won

From WRAG to support group on appeal without attending hearing

Award increased to higher rate mobility and middle rate care on renewal.< From lower to higher rate care and lower rate mobility on appeal for 10 year old

Support group on initial claim

Successful DLA appeal

Successful IB appeal

WRAG on appeal

ESA from 6 to 21 points



Pass It On

You are welcome to reproduce this newsletter on your blog, website, forum or newsletter.

You can also read this newsletter online.


Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
Company registration No.  5962666

If you’re not already a member, find out how to subscribe to Benefits and Work and give yourself the best possible chance of getting the right decision.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

UK Disability Benefits Stress

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Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

One of the severe ME symptoms I find hard to discuss in any detail & yet causes me huge problems, is what I call 'Meltdowns' - Essentially, super sized night sweats - though I can get them any time of the day or night, awake or asleep. It's an insane, shame making machine of clammy grossness, & generally makes me feel like I'm lying in a swimming pool, not a bed - NOT cool, and terribly embarrassing!

There are many causes for night sweats, including the menopause, other hormonal problems, neurological illness such as MS and ME, & even some cancers. For those of us with Myalgic Encephalomyelitis, it seems to be caused by a combination of our neurological problems with thermoregulation/temperature control, our immune dysfunction, and our endocrine/neuro-endocrine dysfunctions. You can read a lot more about ME symptoms on The Hummingbird's Foundation for ME - it's a very long list of ME symptoms so I suggest you use your browser search tool (ctrl F) to search for 'sweats'. There are several small sections covering it.

For me, 'meltdowns' come along or get worse with my body being especially exhausted, after overworking it, if I have adrenaline rushes, or tachycardias, and usually are associated with flashes of heat or chills, (& for some reason, for me, increased pain) and get worse with lack of sleep - ironically, they tend to make my insomnia worse because well, it's not nice to try to sleep in a wet bed, with your hair stuck to your head! It just keeps you from ever getting into the deeper stages of sleep, & ultimately can make me so wide awake that I haven't a hope of getting back to sleep.

Because of this, night sweats aren't purely a comfort issue - they (& the adrenaline rushes often behind them, because they're so exhausting) can easily cause a tidal wave of worsening symptoms. Despite that, none of my doctors have ever been interested in helping me find anything I can do to reduce or eliminate these symptoms. Goes back, yet again, to how once you have an ME or 'CFS'/Chronic Fatigue Syndrome diagnosis in the UK (& many other countries), you're essentially written off by the health service. There is very little of any substance doctors are actually allowed or encouraged to do for us.

My sweats sometimes get so bad that it basically doesn't matter what I do, I still wake up freezing cold in a bed that seems to have had a recent visit to the Sea. :p I'm not talking a little bit of a damp pillow - I'm saying my hair could literally be wrung out, and my bedsheets & especially pillows are absolutely drenched.


Awake or asleep, I can literally have sweat running down my face & drenching my hair like I've just run a marathon - & my head generally feels like it's been deposited in an oven! And as of yet, I haven't found anything that really stops it. It's all pretty awful physically, and added to that is the emotional factor. Sweating is in our society a bit of a taboo, especially if you're a woman ... and really, it doesn't exactly make you feel attractive. It can be really shameful and difficult to deal with ... makes you want to hide away in a hole & never come out - despite the fact that it's absolutely not our fault!! Just talking about this, I feel quite disgusting, and I'm struggling with finding the courage to actually publish this post!

I do have some coping mechanisms that help me copy, which are worth mentioning. (Note, I'm not going to link to any of the products I'm about to discuss, as I don't want it to seem like I'm advertising them. It's just a list of things that help me - that I want to share with you in case it can help someone else too!)

• I have waterproof pillow protectors under my pillowcases. Note - don't use, if you can help it, the plastic kind that just crinkle and rattle about under your head - they're super annoying & sure don't help with sleeping, plus they make you feel like a kid who wets the bed, you know? Instead, find the kind that are towelling on the outside and coated in a PU waterproofer on the reverse of the fabric. They're much softer & thinner - though in all honesty they cost more & don't tend to last quite as long as the other types.
• I also have a waterproof mattress protector, quilted so it doesnt rustle. Expensive, but worth it to protect my much more expensive mattress!!
• I try to remember to keep spare pillowcases in the room so they can be quickly changed if I need. I can't always lift my pillows to do that though, so it depends on whether my carer is here.
• Ok, now this is gross, and totally embarrassing - but a quick fix I sometimes use when the pillowcases can't be changed, or when I know I'm only going to sweat more anyway so it's not worth changing them till after I 'wake up' - I dry them with a hairdryer and then try to go back to sleep. When you're bedbound and dependent to any extent on a carer, you don't always have the perfect option of re-making your bed or even changing your pillowcase! Unfortunately, we don't live in an ideal world. I also hate leaving tons of washing for my carer too, so I try not to have the sheets changed constantly.
• I believe you can actually buy sleepwear specially designed women going through the menopause who get night sweats, which helps wick the sweat away from you so you don't wake up cold - but I've never tried it as I have problems with wearing anything even vaguely heavy - causes too much pain. It's vest tops and shorts for me! Whatever you do though, don't wear silky type clothes if you're having night sweats because they won't absorb any moisture and you'll end up freezing!
• Always try to make sure you have water by the bed, and keep replacing your fluids. Easier said than done for a lot of us, I know, but important all the same.
• You can buy special cooling sheets now, made of Tencel fabric - I've never tried them though, too expensive. I always thought they'd be a really good idea though!
• You can, alternatively, buy a cooling insert for your pillow - the Chillow. Now these are amazing. They have a special gel in them that stays cool, which in turn helps you to cool down. You can even put them in the fridge before bed, if you like your pillow super cool. I find it helps reduce how much I sweat, and also just keeps my head a bit cooler when I am sweating. (It gets radiator hot!) Chillows are designed to stay cool for the first few hours of sleep, then slowly they get a little less cool - just as our bodies are designed to do. It doesn't quite work for me though because my sleeps are so much longer than for most people - so the coldness doesn't last quite long enough. However it helps to a larger extent, and it's well worth the money if you can afford one!! (It also helps when I have a migraine, by the way!)
• I always have a fan on in the bedroom to keep the air moving around the room. This won't work for everyone, probably depends on your specific reactions to room environment, but for me, I simply can't cope without one, even in the winter! Oddly, I sweat more in a cold room than a hot room - & it's even worse if the temperature is very changeable ... so I try to keep my best to keep the room a stable, warm temperature ... with the fan to cool me down. I suggest experimenting & seeing what works for you. :)
• I use a lot of talc for when I have milder sweats. It does nothing for the worse ones, of course.
• You should probably be careful how much caffeine you have, & spicy foods you eat; & how much alcohol you drink.
• I have heard that for some people, certain vitamins, such as vitamin D, can help reduce or even eliminate night sweats. I'm in a catch 22 here though, because I literally can't afford to buy vitamins every month ... and my doctor always seems reluctant to prescribe them as of course, it costs the NHS money.
• It's also worth checking your thyroid function. A lot of people with ME may have thyroid problems which can contribute to these symptoms.

Reader Question : Do you have any coping tactics which help with night sweats?

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

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