Sunday, 29 May 2011

Cardiologists, PCOS and Vitamin D Deficiency

Hey everyone,

I wanted to let you know how things are going with my health right now, as there's quite a lot of things happening!!

I've been having increasingly worse issues with my blood pressure and tachycardias/palpitations recently and it had started to get me worried, plus it's limiting my mobility even more, and making me more tired ... so I started looking into it online when I was able to do some reading. My symptoms point to my probably having Postural Orthostatic Tachycardia Syndrome (POTS). Since I wasn't sure if I was just overreacting, I decided to do some tests on myself before talking to my doctor (it's not easy to get hold of her even on the phone). My dad has a small blood pressure machine, so I was able to do a 'Poor Man's Tilt Table Test' on myself.

Often a proper tilt table test will be done on someone where POTS is suspected. The test is generally done in hospitals and involves being strapped into a table and gradually raised, whilst monitoring your blood pressure to see if it changes dramatically when your posture changes. For most people, the body naturally copes with posture changes without it affecting blood pressure. For those with POTS, it doesn't, and the blood pressure rises, along with the heart rate. For people with ME, tilt table tests can be quite dangerous, hence why it's a better idea to do the 'poor man's version', which is basically taking your blood pressure after time spent in different positions (lying, sitting and standing) - There is information on this on Jodi Bassets Hummingbird site. If you go to the Testing for ME page, and click ctrl F to use your browsers search function and search for 'Tilt Table Examination', it describes the poor mans test in detail.

I really wouldn't advise doing this test without a doctor present - it was pretty gruelling to be honest ... but for me it was easier because my access to doctors is so difficult. I think over the last few months I've gotten more and more frustrated with the meagre level of care I've been getting for so many years, and becoming more and more desperately in need of help. It's got to the point where I know if I don't push to get what I need, in whatever way I'm able to, things won't ever change and I have no chance of things ever getting better, and a very high probability that they'll get worse! So I had to ... have to (!) ... do something!

Anyway, the poor mans test showed that something is most certainly not right, and although I'm not a doctor, (I was a nurse before my ME became severe) I am fairly certain that POTS is an issue for me, though whether anything else is going on I have no idea.

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So, last week, I finally managed to get a phonecall from my doctor, ironically for something small I needed a consult for. She 'can't' do home visits, and I can't get to the surgery unless it's so urgent there's no other choice, so for me a phonecall is about as good as it gets. (And yes, I've tried other doctors - she's the best of the ones I've tried. She does at least seem to accept I am genuinely ill ... but there are constraints on her from the surgery to not do home visits unless the patient is terminally ill with cancer, basically.)

I didnt really tell her anything new as such, other than the tilt table results, since i gave her an up to date written list of my symptoms very recently - but she must not have read it well enough, because she seemed totally surprised when I told her about the cardiac symptoms I've been having, and the fact that I have now been having severe gynae issues (bleeding almost constantly) for around 3 years now. I guess she just presumed that had cleared up since I haven't talked to her about it in like 2 years. (Funny that, how when you don't see a patient, you don't know what's going on in their lives. Smilie pulling tongues. Image copyrighted to Camilla Erikson)

Last time we talked about it I had a gynae scan & because of the risk of endometriosis etc (I have Poly Cystic Ovarian Syndrome - PCOS), these are meant to be done at regular intervals, so she insisted on a scan as soon as it could be ordered, & a specialist consult to see if we can get things under control. So, that's appointment number one that I will have to go to in the near future.

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She seemed very worried indeed about the blood pressure/tachycardia issues, and the results of the tilt table test. (I'm still seeing irony here, since I've told her about tachycardias/palpitations on at least 2 occasions before, sigh. It's frustrating to feel like I have to figure out my own health problems because no-one is doing it for me ... but I guess that's life for so many ... too many ... people with Myalgic Encephalomyelitis in the UK right now.)

Picture of hearts by Andrea Smith. View her flickr photostream.
So, she's referred me to a cardiologist - massive surprise as that means she's actually taking me seriously - a novelty in my experience!! She's going to try to get me set up for a constant cardiac monitoring (I presume for 24 hours) at home, too, so that I'll have the information already available when i see said cardiologist, which will mean less possibility of any hospital stay, even as a day patient. I really hope she does get that set up as it'll take a bit of the stress out of this for me.

So - that's appointment number two that I have no choice but to attend in the near future. Honestly, I'm so stressed about having to go out ... and the possibility of not being able to do everything in just one visit, too! I know how much my recent dental visit took out of me ... I'm still not back to where I was before it, now, months later!! I'm so scared of what result these visits could have on my overall health and disability - but they're unavoidable because logically thinking, the results of ignoring these problems could be just the same, or worse, for my health. These new appointments will inevitably not be as well-organised as my dentist appointment was, either, probably meaning much waiting in hospital waiting rooms, sitting up (horrible in and of itself), and of course there'll be all the stress of trying to introduce a new doctor to the medical mammoth that is ME. And even more worrying is the inevitable crash afterwards, and even the possibility of a full on relapse from so much activity and stress at a time when I can already barely even make it to the bathroom 2-3 times a day!

Of course there are also worries about the results of the tests, but I've been living with bad health for so long, that somehow doesn't seem quite so scary. Funny, I'm more worried about my ME getting worse than I am of a potentially serious cardiac disorder, for instance. Says a lot about what ME has been like for me, really, doesn't it! Smilie Sighing. Image copyrighted to Camilla Erikson

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As the first step in seeing what's going on in my body right now, my Dr sent one of the practice nurses here to take copious amounts of blood from me this week, to send off for various tests. The main thing she was testing for was vitamin D deficiency. (again this was something which I was concerned about, researched, and then talked to her about last week) I've been concerned for a while that I might have a severe vit D deficiency due to being housebound for 8 years, & rarely even seeing the sun. I have a lot of symptoms of it, and it can lead to some quite serious issues, particularly with your bones (Osteomalacia) which could explain some odd symptoms I'm having, and some of my pain and muscle fatigue in general. It seems insane to me that doctors would not routinely think to check for this deficiency in patients they know are bedbound, considering the serious affects of long term deficiency - but there we are!! I would never have thought to look for it unless I'd researched the symptoms I was having and tracked it back to it possibly being osteomalacia. Or then, perhaps it's only ME patients with whom they are so lax? Who knows?!?

The tests came back a few days later, and yup, I'm quite severely vitamin D deficient. (It's worrying but it also gives me some hope for the future (though hope is kind of scary in this instance - there's so much at stake if these things don't make any real difference), that actually this is something treatable which we can hopefully reverse to some extent and so reduce my overall symptoms & severity!! I haven't had something like that to really hope for in a long time.

Sun in a Jar! Vitamin D Capsules - Image by essgee51, view their Flickr profile here!
The doctor wants to refer me to a specialist about the vitamin d deficiency, too, and get a scan done to check my bones ... but she's willing to wait on that until the other 2 more urgent things are done, so I don't have to take on any more all at the same time, thank god!! In the meantime, she's going to prescribe vitamin D - she's trying to figure out how much I'll need. (I was already on basic grocery store supplements so she needs to work out how that changes the amount I will need, shown by my blood results) I might well need it in injection form, but she might also start me on oral treatment to see how I go on that, and if it doesn't work well enough, bump me up onto the injections. I should find out over the next few days how she's gonna go with that.

So, that's where I'm up to right now. Waiting for a stack load of appointments and wondering how the heck I'm going to deal with it all ... not to mention trying to get together a good lot of information for the cardiologist since he may never have dealt with someone with severe ME before! (Or worse, may not 'believe' in ME as a physical illness!!) I want to be prepared but I'm half killing myself trying to read and decide what they need to see, etc. Fun.

Honestly, I feel like over the last year or so of getting more involved in the ME 'world', all I've been learning is how little I really know about ME, (even though I'm aware I know more than a lot of people who have only been given the CFS diagnosis when they really have ME, and have learnt so much just through living it for 15 years!) and how much more the UK health system COULD have been helping me, in very real ways, were they not so focused on treating it as all in my mind, and instead were using international research which proves otherwise. I feel so angry ... and so scared. I feel that had I known what I am starting to know now, 15 years ago, it would never have come to this ... completely bedbound and needing to see a cardiologist! What would have happened if I hadn't done the research and discovered that my symptoms fit with Osteomalacia and asked the dr to test for vitamin d deficiency? (Lynn Gilderdale, for example, suffered many broken bones because of this very issue, including a broken back!!) If I hadn't got so desperate and started reading more, and fighting harder, what would be happening to me now things have got so bad? What has already happened that should not have had to?? How dangerous could that be for me?!!? I feel so alone with it all. I wish I had a doctor to do the research FOR me, because I'm really struggling to find out everything I need to know - because I don't have anyone I can trust to do that for me. I understand now why some people end up suing - something I would never have even considered before, for many different reasons.

A friend, Dominique, is really inspiring me to learn to live better within my 'energy envelope' and not to push myself so hard. She's doing it tough learning to do that, and I find it really inspiring. (I doubt she realises that!) I hope I have the guts to do the same, but I'm finding it honestly a rather terrifying prospect. Kudos to her!

Divider image of daisies / flowers.

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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! :)


Wednesday, 18 May 2011

Best Birthday Present Ever!!

Just a realllllly short note today - my energy was all wiped away over awareness week. (Totally worth it, but completely exhausting!!)

It was my birthday yesterday, and in the noon post, I received a card from my brother and sister in law. Enclosed in the envelope was a complete surprise - a picture by my 1yr old nephew Jack, who recently discovered colouring pens! ;)

Best Birthday Present EVER!

(Ok, maybe not quite ever as I've received some very special ones from other loved ones over the years (Yep, I'm talking to you, Johanna & Sally!) but certainly one of the best! I can't imagine much that would have made me smile so much on a birthday where I felt so ill and couldn't even get out of bed.)

I don't get to see Jack very often at all, though he only lives across the city from me (and I'm talking a UK city, not a huge American one!), so this is just so special and wonderful to have. My mum happened to be going into work today, so I asked her to laminate it for me, and it's now sitting on a shelf by my bed along with birthday cards from family.

picture by my 1 yr old nephew Jack, sent to me for my birthday. :)

How completely adorable is that??!!?? I can only imagine how much he managed to colour himself while he was at it! ;)

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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! :)


Saturday, 14 May 2011

My Brave Face. My Truth : Behind the Mask

I'm one of the 25% of people with my illness who are severely affected. I am completely bedbound. I have to lie almost completely flat most of the time, as even sitting can cause me to become completely exhausted very, very quickly, and cause my blood pressure and heart rate to soar. I have to be completely propped up by pillows all down each side of my body, and even under my arms to hold them up, as I'm simply too weak to do it for myself, and it cases a lot of pain to not have that support. I'm in almost constant severe pain.

I only manage to get out of bed 2-3 times a day, to drag myself upstairs to the bathroom, nearly fainting along the way because my blood pressure is so whacked out. I often don't have the energy to brush my teeth and am left with the choice to either allow my carer to brush them, or go without. I only have a shower once a week, able to do so only by taking some pretty strong codeine and drinking caffeine & glucose drinks beforehand. Afterwards I have a crash - markedly increased symptoms - including pain and exhaustion for usually several days, leaving little energy for other things I may need or want to do.

I am exhausted all the time. Not tired. Not fatigued. No ... it's this illnesses own special brand of exhaustion, where my body literally cannot cope with even the simplest of tasks. It's a bone-crushingly awful fatigue that often makes me feel like an elephant is sitting on me, and I have a rope tied around me pulling me down into the earth. There are times when I can't lift a cup, or feed myself, and my carer has to do so for me.

I live in my bed, in a bedroom in my parents house, because I lost my own home as I couldn't keep up the mortgage payments after being on disability benefits for several years. I live in semi-darkness as I can't face strong light. My curtains are constantly closed, so I can't even watch the world go by.

photo by chispita_666 via PhotoRee

At times I've been so ill that my carer has had to help me bathe, help me sit on the toilet. Often I've spent hours, weeks, months paralysed either permanently or the majority of the time, with my carer having to do everything for me.

Often even talking is too exhausting - and even when I can speak, my neuro issues are such that it's sometimes hard for me to make myself properly understood, because I'll be thinking one word and say another, often completed unrelated word. I also forget words all the time. I know that I know the word but I simply can't 'find' it in my brain. I lose my train of thought constantly ... and my notes have notes, because it's the only way I know to TRY to keep myself organised.

I have cardiac and (unrelated) gynaecological problems complicating my situation further and causing further sickness and disability.

The days when people actually see me, such as when family pop around to spend a little time here, what they're seeing is the result of days of rest beforehand to prepare myself, plus a huge load of painkillers and caffeine tablets/drinks in order to be able to function well for just a few hours, to cope with the visit. And, which they also don't see, as soon as they've left, I crash and suffer quite severely over the following days, or even weeks, from those few hours which for you were nothing at all. This is one of the reasons why ME is seen as an 'invisible' illness.

My posts on this blog more often than not take me hours to write, over a longer period of time, a little at a time. They are exhausting to write, physically, emotionally, and neurologically. I use the spell checker because my neuro problems are such that I often misspell words I know perfectly well how to spell ... and my jerking, shaking hands cause me to make typos. I also edit the posts carefully, because of my neuro issues. It takes me time to phrase things rightly, so that people understand what I'm really trying to say ... and I often substitute words for other, wrong words without even realising I've done it - and of course a spell checker doesn't pick that up!

And none of this really even begins to cover what I go through each and every day of my life.

My life is exhausting, frustrating, painful, and pretty extreme - though despite it all, I still have some joy in my life. My illness is Myalgic Encephalomyelitis : ME, an illness which affects hundreds of thousands of people in the UK - yet is one of the worst researched diseases in medicine today. Sadly, being given a diagnosis of ME is not only to be given a sentence to live with these kinds of symptoms for the foreseeable future, but it also sentences many of us to a lifetime of being disbelieved and abused by the medical community, and even by our friends and family.

I'm hoping that this post, and the video I've added to it, by Chlay : My Brave Face (I've tried to show my brave face here today, too!), will help you understand more about what it's like to actually live with this illness. Please pass this post onto your friends. Post it on Facebook or Twitter; Share it by email with friends; re-post it on your own blog with a link back to this one; print it out and hang it up at work - do whatever you can do to get the truth out there on this, International ME Awareness Day, May 12th.

The following video is by Chlay, and she explains very concisely what this illness is like, and how it's sufferers are treated. Chaly has released a charity single, 'Silently', for the ME Association. You can buy the single on Itunes for 79p. Please support this effort - even the smallest donations help massively!

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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! :)


Tuesday, 10 May 2011

ME Awareness Week Video

I wanted to share a video with you, made by a 16yr old ME sufferer (DAiiSYXO) for ME awareness week this year. It's a really powerful way of showing what this misunderstood illness is really like for people, behind the mask we wear for other people, outside of our own homes.

The song, 'Silently', featured in this video was a charity single released for the ME Association by Chlay. You can buy the single on itunes for 79p.

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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! :)


May 12th: ME/CFS Awareness Day

Post written by Laurel, & re-posted with permission!

Photo by, used with thanks

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. Chronic Fatigue Syndrome (CFS) is a serious disease with a ridiculous name. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E). It is often abbreviated ME/CFS.

2. ME/CFS is a complex, multi-systemic illness, affecting the immune, endocrine, cardiovascular, autonomic, and central nervous systems. It is classified by the World Health Organization (WHO) as a neurological disease.

3. In order to be diagnosed with ME/CFS, you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50%, as well as at least four of the following symptoms: post exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory loss or difficulty concentrating. These symptoms must be present for at least 6 months or longer. ME/CFS patients often also suffer from neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, flu-like symptoms, shortness of breath, chest pain, and other symptoms.

4. According to the CDC, ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late stage AIDS, and end stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted in The New York Times as saying:

"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

5. ME/CFS afflicts both genders of all classes and all ages, including young children. Approximately 1 to 4 million Americans have ME/CFS. That's more than breast cancer, AIDS, or lung cancer combined.

Additionally, at least 17 million people suffer from ME/CFS world-wide.

6. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are homebound or completely bedridden.

7. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with ME/CFS, including mycoplasma and Lyme Disease.

8. In October of 2009, Science Magazine published a study showing a link between a newly discovered human retrovirus (XMRV) and ME/CFS. This study was conducted by the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic.

9. There are over 5,000 published studies showing a clear, biophysical pathogenesis in ME/CFS. Some abnormalities found in ME/CFS include: low natural killer cell count and activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, left ventricular dysfunction in the heart, and delayed VO2 max (maximal oxygen utilization) following exercise or exertion.

10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment).

11. Despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.

12. Currently, there are no FDA approved treatments for ME/CFS, and there is no known cure.


Phoenix Rising: About ME/CFS

Whittemore Peterson Institute

The CFIDS Association of America

Some things you can do to help:

1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.

2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.

3. If you know someone with CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.

4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.

5. Take a moment to ask the Secretary of Health to implement the recommendations of the CFS Advisory Committee. The CFIDS Association makes this easy for you. The letter is already written, so that all you have to do is add your name and address. There is room for further comment should you choose to add any additional thoughts.

6. Wear a blue ribbon to show your support. If you are on Facebook or Twitter, consider putting one of these Twibbons on your profile picture to raise awareness.

ME/CFS 12th May Awareness Twibbon
Pandora Neuro-endocrine-immune centre Twibbon
XMRV & ME/CFS Twibbon

7. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities, such as the

Whittemore Peterson Institute,
The CFIDS Association of America, or

If you are unable to donate, you can instead write to your local senators or government representatives and ask that they allocate more funds toward ME/CFS research.

8. Below are a few informational videos about ME/CFS as well as XMRV. Take a look, listen and pass them on.

SolveCFS Video

XMRV Discovery

Sleepydust Video

For more information on ME/CFS please visit any of the organizations linked on this post, or in the 'Useful Links for ME Support & Info' section on the sidebar.

This post was written by Laurel on her blog Dreams at Stake, &
was re-posted with permission, with many thanks to her!

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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! :)


Sunday, 8 May 2011

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!!

Photo of Disabled Stairs by Michael Niemand - View his Flickr page here

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 about the UK disability benefits system

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. 


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

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Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
Company registration No.  5962666

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Susannah's Signature
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! :)


Sunday, 1 May 2011

An Ocean of Grief

I've had a few really difficult weeks in terms of increased symptoms, after over-extending myself in various ways, and have had no choice but to not be online much, & to rest as much as I can stand it. I haven't had any spare energy to give, so I've had to just stop, and deal with the emotional fallout of that - which has been quite extreme given the amount I am repressing already on any given day. I have so much grief and hurt hiding inside me - and the main way I keep it shoved down deep inside is by keeping my mind busy.

So unfortunately, the side effect, for me, of slowing down is that I have more time to think not to mention feel. There's nothing to fill the silence inside my mind. When I'm able to stay a little busier - be online, connect with people, write on my blog, do small jobs on the forum I work on, read books ... it gives me less time to really feel what I'm going through. Less time to focus on how difficult, uncertain, scary and intense it is to be so ill, dependant, and isolated. Less time to remember all the things I've lost, and the things I may never have... To feel guilty about the burden I place on everyone around me... And most of all to remember that with each passing year I am missing the chance of finding a special someone to share my life with, who will love me as me, and with whom I can bear a child. At 35, with an pre-existing infertility issue, the chances of me ever having a child of my own are probably now completely lost. When I can't keep my mind busy, those long hidden things tend to come flooding back in .... So needless to say, I'm really struggling right now.

Image © Tran Nguyen - 'Drowning in a sea of uncertainty' - Permission granted to use by artist
Sometimes I think my life is rather like I'm constantly swimming in this huge ocean of emotion ... and on a good day, when I can stay busy, I manage to swim, and so stay afloat - but bad days feel like I've been pulled under by a rip tide, and bashed my head on a rock. I'm stunned, and these waves just keep hitting me & I'm powerless to do anything about it. Unable to keep my head above water. I know it's really bad when I don't even feel anger anymore, just a deep, dark sense of despair, fear, fatigue & hopelessness.

There's been so much grief in my life, and often that's all I can see ahead of me, too. I don't see that as depression, or even a sign that I'm giving up hope ... it's just that the reality of my situation is that there's not even a little bit of certainty in my life or my future - and there's an overwhelming likelihood that this state of loss and grief will continue indefinitely, until I've missed every major milestone in a 'normal' person's life, and lost most of the good things that I did have.

Image of woman sinking into the ocean, copyright MJ Photography and Design - View her Flickr page here!I don't plan on giving up the fight, but I feel that every year that goes by with me still so severely ill is another battle lost ... and takes me another step closer to losing the war. And maybe that's another reason for the strength of my feeling right now - it's my 35th birthday next month - another year gone by without me being able to leave my bed and live my life.

I try so hard to hang onto the good things, and not to give up hope - but it's the hardest battle I can imagine! Honestly, this life I'm living could barely be called a life, and it's really, really hard to keep fighting when everything seems to be against me, and when I'm just so darn tired of it all. I don't even have to simply fight my body, my illness ... I also have to fight just to be recognised as genuinely ill. To get the medical treatment I need. The acceptance, support and love I need. Nothing comes easily when you have M.E. I'm sicker & more disabled than the majority of people with (for example) MS, Cancer, Aids ... yet am treated like there's nothing really wrong with me physically. I just can't begin to describe how completely soul destroying that can be.

Hope is a choice, not a feeling! - Photograph copyright Ashley Rose - View her Flickr page here
I am so alone medically - half of my symptoms haven't even been officially documented, never mind tested & diagnosed. I sometimes think ME is loneliness. I may as well be in a country with no medical care, because I receive barely any support or treatment. This situation doesn't exactly render my default setting 'hopeful', rather, that's something I have to fight for. Have to earn.

My conclusion? Hope is a choice not a feeling!!

My life ... I suppose all of our lives, are a complex twist of pain, joy, hope & grief all muddled into one. Some of us have more pain and loss than others - but the principle remains the same however much we hurt - we have to choose whether to go on and live through it, try to forge out some semblance of happiness - or give up and fall into our pain and stop seeing the joy. For most people, there's probably a close to even balance of good and bad. Sometimes, for some of us, our lives overbalance into the negatives and we then have to work even harder to see the positives - and to find enough of a reason to go on.

Living in a State of Emotional Darkness - Photograph copyright madamepsychosis - View her Flickr site hereSome days I'm really struggling to find that reason. Much of the reason I do keep fighting is for the people I love - because I don't want to hurt them by giving up - but that isn't enough to make me happy, only enough to help me survive. I feel like I'm living in a state of emotional darkness. That's not to say that the light doesn't occasionally manage to flicker through. There are moments of love, of beauty, of memory - but those moments are all shadowed to some extent. I honestly can't remember the last time I felt pure, unfiltered happiness - and that in itself is a massive point of grief.

I feel like I should try to end this post on a positive note ... but honestly, I just don't think I have it in me right now. Life is tough sometimes, and this is one of those times.

Susannah's Signature
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! :)