~*Please Support the Big Shave!!*~

Hi everyone,

I wanted to let you all know about a charity event I'm taking part in during M.E. awareness week this month. On the week of the 12-18th May, several people with ME, myself included, are shaving our heads. We're doing it to raise funds for two ME charities, my personal favourites: The 25% Group, and Invest in ME. :)

I want to ask all my followers here to really get behind this event, by sponsoring us, of course, if you're able.... but also by sharing this event with friends, family, and your social networks, or posting about it on your blogs and websites. We really want to use this event to raise awareness of ME, and of its affect on the lives of those living with it! We hope that such drastic action as shaving our heads (especially given that most of us are girls!!) will inspire people to read about the truth of ME, rather than just accept what they read in the media. I do feel that, just possibly, the tide is beginning to turn here in the uk, there having been more positive articles in the press and more biological research widely(ish) publicised than I've ever seen before, over the last few months (though they are still disproportional to the negative ones, sadly). I can only hope that this positive trend will continue, and grow, and that more people than ever will learn the truth, and get behind ME sufferers and our families, to change the way we are treated in this country! I (and others taking part) have been struggling to find the energy to promote this event in any way. As you may have guessed from my online absence over the last few months, I've been particularly ill recently - so every second i spend working on this is affecting me negatively. As a result, anything you can do to spread the word, or bring in more sponsors, just seems like a huge gift to me, as its one less moment I need to spend pushing myself past my limits to get things done!!


Below, you can find my official Big Shave blurb, which you are welcome to post on your own sites! At the bottom of this post, you'll find all the information you'll need to securely donate to this cause. :) You can also visit the official Big Shave website at: http://www.thebigshave2013.org/ where you'll find information about everyone taking part, about M.E. itself, the charities we are sponsoring, and about how to donate to them.

If you're feeling brave, and wish to join us In shaving your head, there's still time to get involved! Just contact us at thebigshave2013@gmail.com and Amy (Or AngelSolace, as many of you may know her) will get you all set up!

My Best Day of 2012 - One of Few.

"Hello, my name's Susannah Grace, I'm 37 years old and bed-bound with severe M.E. I first became ill in 1996 after a bad case of glandular fever. I was desperately ill for 6 months, finally returning to my training as a children's nurse, though every small effort I made was excruciating. When I completed my training, I began work as a neonatal intensive care nurse (which I absolutely loved!), and continued working there, at first full time, then gradually dropping my hours as I became sicker.

Several years later, I was hospitalised with an infection which caused my M.E. to relapse severely & I became housebound. I was managing to leave the house only a couple of times a year, in my wheelchair, with my carer until a few years ago when i became so ill that I became completely bed bound.

Over the past 17 years of my illness, I've come across an awful lot of misunderstandings and prejudice about M.E. in the general population, the media, and most disturbingly, within all the medical professions. I wanted to do something big to try and raise awareness and to promote understanding of this illness that has robbed so many of their lives. The Big Shave seemed like a brilliant way to do that, particularly as the charities being supported by it are the exact ones I would most like to help. This past year my condition has deteriorated, but when I heard from Amy about her plans for the Big Shave, I was determined to take part! It's something I can do from my bed, despite all my limitations!

A Normal Day for Me.

As someone suffering from a severe form of M.E. I have been a member of the 25% M.E. group for some time now. They were one of the first groups I had encountered online when I first tried to find others who were bed-bound like me and the group had a profound impact on me. Invest in ME have also helped me hugely. In fact, this year they came to my aid when I was having problems with social services in getting more help with my care situation. They took the time to send a letter and information to my social work department to help them understand my situation! I really want to support these organisations which have made such a huge impact on mine and many other people's lives. These charities have very little money coming in compared with others and really need our help to be able to continue providing vital services for people all over the country who are suffering from this illness.

I used to have pretty awesome hair and I loved getting it styled in different cuts and colours (red usually!). Nowadays, I'm not well enough to get to the hairdressers - all I can do now is just literally chop off my ponytail every so often to stop it getting too long! In actual fact, trying to keep my hair clean is a huge struggle for me, (to the point where I have ended up with dermatitis on my scalp) so in some practical ways, this move will really make life much easier. I have heard that some people bed-bound with severe M.E. have chosen to shave their heads because they just couldn't manage to keep it clean... so the Big Shave just seemed to be a perfect act of solidarity to those who are even sicker than I am!

My mum's lovely hairdresser, Alyson Tunstall, (who also shaved my mum's hair when it started to fall out during chemo) has agreed to come to my house to shave mine all off for the Big Shave! On Tuesday 14th at 8pm. (Well, actually, I'm getting a buzz cut, since shaving would irritate my skin too much. I'm quite nervous about it - it's a huge step for a girl to take, especially, but am totally going for it to raise as much money as I can for this brilliant event... So please give generously to these charities! There is some information about M.E. on this site (click the 'About ME' link at the top of the page!) - please read it and share it with friends, to help us raise awareness and promote understanding, too!

The last 9 years particularly have been a great struggle, but over that time, I've managed to keep hope alive, and found that, that is the greatest survival mechanism one could foster! When I'm up to it, I like to work on my blog (www.thethingwithfeathers.me), where I write about living with very severe M.E. to raise awareness and to try to offer hope and encouragement to others struggling with chronic illness. If you're interested in learning more about M.E. or in hearing more of my story, please feel free to check it out!

Thanks so much for your support, it really does mean the world to me, and it's going to help so many people!"

“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” — Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

To donate to my Big Shave, you can either: Text in your donations by texting: TBSG99 £5 to 70070 to sponsor the 25% Group today. TBSI99 £5 to 70070 to sponsor Invest in ME today. Or Give online securely, via Just Giving: To sponsor Invest in ME - http://www.thebigshave2013.org/2013/01/invest-in-me.html To sponsor the 25% Group - http://www.thebigshave2013.org/2013/01/25-me-group_29.html You can choose which charity to give to, or even give to both!!! Please let me know if you send in a donation, so that I can add you to my info. If you're a uk tax payer, gift aid is available, if you provide your postcode. :) If you live in Liverpool, you can also donate in cash - just contact me or my family! I'd love to know if you post about The Big Shave on your own sites, too! Just leave a message here on this post, or email me at susannah@thethingwithfeathers.me.

Thank you all so much for your support, you have no idea how much I appreciate it!

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! :)

~*Please Support the Big Shave!!*~

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Scared of the Stigma of Being Mentally Ill...??

I'm sitting here thinking about Simon Wessely's much broadcast view that people with ME are simply scared of the stigma of being labelled as mentally ill. That, that is why we won't accept that our illness isn't psychological. I'm considering the oaths that doctors take at the beginnings of their career - and seeing clearly that the psychiatrists who have so terribly treated people with ME have broken almost every one of them in one shape or another. And I'm wondering how much it was those broken oaths that got us to the position where an ME patients' doctor can think that it's ok to neglect to reply to communications for weeks, even months at a time. Where the patients are responsible for their own biological research funded if they ever want to know what's really happening to their bodies, never mind get treatment for it. Where patients and their carer's constantly have to fight to get basic care needs met. Where promises are consistently broken by our medical teams. Worse, where the opinions of the few have become the feelings of the many, via the very clever media manipulations on the subject of M.E., that have been a constant in the UK for decades now, thus negatively affecting our treatment by insurance companies, welfare state, families and the wider society!

Dr's take an oath to do no harm - in fact, to do good; to protect the health of their patients; (interestingly, and perhaps key for us as ME patients, they are expected to make the care of their patients come first, above and beyond the needs of the Trust, NHS, or society!!); to keep their own professional knowledge up to date; to respect the dignity of patients, politely & considerately. To be open, honest, and to act with integrity; to never discriminate, and so much more. I just have to wonder why, how they would then think it ok to treat us the way they do, just because of their personal feelings, or because of what the NHS's stance is on that patient's specific diagnosis? How, in the case of my own doctor at least, can she genuinely not see that she is in fact being neglectful?? Because despite the fact that she has been making some efforts to improve things, the care I'm given still doesn't even barely reach that which a person this ill with most other diseases would receive.

How is it, in fact, that in our society, different diseases are somehow given different status. 'The Big C' of course is given the most respect, patients awarded as much care as humanly possible (in the majority of cases, at least - there are always sad exceptions) - M.E. is awarded the very special status of having the least respect, to my knowledge. It's victims are actually made the laughing stock of the medical community and the media. Illness just isn't simply illness anymore!


Professor Wessely has many times now made the case in the media that ME patients refuse to accept the psychiatric model of ME because we're scared of the stigma of mental illness. What a joke! I face stigma every day worse than that of someone with a mental illness, because as well as being viewed as just a label, treated with disrespect & ignorance, I am also treated as though my illness in fact doesn't even exist. (Which would not be true even if ME was a psychiatric disorder, since that by definition IS real!) My physical symptoms and disability are downplayed, ignored or disregarded, often completely disbelieved. Everything I say, do, believe, and am, is up for grabs for doctors to pounce upon as a reason why I am not as important as a patient with a real illness and why what I say about my illness, body & life can't be true. I've spent the last 15 years being neglected in a very real way, given little or no treatment, even where tests have proven some physical problem. I am not even given the majority of the tests and treatments recommended by international specialists for my very real illness. In essence I am just left to rot, along with everyone else with this diagnosis. And this isn't just my experience! Hundreds of thousands of ME patients in the UK have had this kind of experience, or much, much worse. Millions worldwide are little better off.

I truely believe that I would have a much, much easier time accepting a diagnosis of depression, borderline personality disorder, obsessive compulsive disorder, etc than I do dealing with what ME has done to me, to my life, and to the lives of my loved ones. I know many people still hold a stigma against things and people they don't understand and this makes life often really, really difficult for people with psychiatric disorders, and I don't want for a minute to downplay the agony many of those people face! - But I'm a nurse and I personally have no issue with people who are mentally ill - I find them in main very brave survivors! I refuse to stigmatise them for what is real illness. They're all human beings just like me and you - none of us perfect in any sense of the word. So the question remains: why should I be afraid to be part of that group? The truth is, I'm genuinely not any more scared of that than I would be of developing any other illness I might experience in my life! That's not to say that it wouldn't be scary and very hard indeed at times or that I wouldn't have to face stigma if I was in that position - of course it would be, and I would - but it's my opinion that it's harder in this current society to have a diagnosis of M.E. than it would be to have been diagnosed with the majority of mental illnesses, both because of the stigma, and because of the illness itself and the destruction it's wrought on my life.


What I do take issue with, what I am afraid of, is my reality of having a real, proveable, disabling physical illness (which cannot even begin to be explained by Wessely's definition of ME as an 'illness belief') be ignored and left untreated. Illness beliefs do not cause tachycardia's, palpitations, blood pressure imbalances, fainting, weird and wonderful blood test results, limbs that go literally blue when you are merely sitting, paralysis, temperature & sleep disorders, sensory overload, severe chronic pain, body clock reversal, and all the other things I, and many other severe ME patients have going on. (I personally have a scary list of symptoms several pages long, which probably makes me look like I'm completely mad when I hand it to a doctor, lol!)

photo by ValetheKid	via PhotoRee

Illness beliefs don't cause people to become literally bedbound, struggling even to go to the bathroom a couple of times a day - never mind to only be physically able to have a shower once a week!!! (If you've never tried it, don't bother - it sucks as much as you might think it would, and worse!!) They wouldn't cause tens of thousands of people, in this country alone, to lose their careers, social lives, personal hygiene, healthy bank balances, their homes, friends, and sometimes even their families. They sure don't make you choose to endure the degradation & humiliation that comes with needing personal care such as help having a bath, or someone having to cut your food up before meals, or even to have their carer's need to feed it to them like a young child!! In addition, I take issue with the fact that these doctors, treating us so neglectfully, or downright mistreating us, all swore an oath to do no harm!!! That is the most important vow a doctor takes, yet the one most ignored when treating patients with Myalgic Encephalomyelitis!!

It's a very, very rare psychiatric illness that could cause such enforced human misery in a person and such a terrible quality of life for it's sufferers - and moreso, I simply don't believe that an ilness belief could cause that suffering on the scale of what we are seeing with cases of Severe ME, where 25% of people with this diagnosis are housebound or bedbound, often for years or decades at a time!! What's more, it makes no sense that those people all would be struck down by an illness which follows such an extremely similar pattern (usually despite a previous lack of knowledge about ME on the part of the patient), and in fact has often occured in clusters! To my mind, there are so many obvious points that make it absolutely inconcievable that this illness could be concocted in our minds somehow. This many people (hundred's of thousands in the UK alone, of all ages!!) would not choose to live in such conditions, if they had any choice in the matter - especially people who in previous lives pushed themselves regularly to their limits, fully enjoying their life, freedom, & health.


So no, Professor Wessely, I am not afraid to accept the stigma of having a mental illness. I'm simply afraid (not to mention disgusted) that the environment you helped to create in this country (and beyond!) is neglecting & mistreating people on such a massive scale. I'm angry that one group of doctors, headed by one man has changed public perception to see only their personal opinions, despite the fact that they are not backed up by international science/research. I'm angry that the majority of journalists reporting on M.E. seem only interested in catchy headlines, not truth. And I'm angry that I am one of those forgotten, abandoned, invisible people & that I cannot even enjoy the most basic of beauties, such as the sun, trapped in these four walls with dimmed light, as I am. I'm frustrated that for 15 years, I've had so little real medical support that I now have to do all the research into my condition myself, despite the consequences for my health, because there is no doctor specialised enough, or willing enough, in my area to do it for me - few, in fact, in the whole of the UK. And quite honestly, I'm terribly afraid that these situations & prejudices will not soon change for us, no matter how hard we fight them, as they are deeply ingrained in the public mind, thanks to your media tinkerings! I just wish you and those who agree with you would try to understand that unless you have walked a mile in our shoes, (or in my case, simply stand up, still, for a few minutes - that'd be plenty to show you how bad it gets!!) then you can't possibly understand just how real and destructive this disease really is - though truthfully, I wouldn't wish even those few minutes of this disease on even you, Professor Wessely - No-one deserves this!!!!

If you're reading this and all you know about Myalgic Encephalomyelitis is what you've read in the media, please find out more from reliable sources! Until you've really educated yourself, you can't take the word of a journalist or even a doctor as truth! So don't judge us based on what you read in the papers - after all, you never know when you might find yourself walking in our shoes too, and I'm certain that if you did contract M.E., you wouldn't want to be judged like that either!!

There are many links in my sidebar to great sites & books about M.E. that will help you to understand what it really is, and how it affects the people living with it. I particularly recommend the book Lost Voices which tells the story of many ME sufferers and their families in a really easy to read format. There are also many wonderful people in the ME community who would be willing to talk with you. I know I would love to help you really understand! Once you've read up, then speak out for us too. Educate your friends and family! It's only by us all working together, sick & well alike, to end this stigma and medical ignorance, that things can ever change! Thank you so much!! :)

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! :)

Scared of the Stigma of Being Mentally Ill...??

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The Lives We Have Lost - Reader Participation Post

One of my readers (Brent - @ArgyrosfeniX on Twitter) suggested a while back now, that I write a post asking readers about what careers they have lost or are struggling to keep up with due to their illness or disability. I thought this was a great idea, and have been intending to use it since. :)

So many of us have lost so much due to sickness and disability - and those losses are hard, and have a major impact not just on our day to day lives, but on our futures, our finances, our family relationships, our self esteem ... I could go on! I think it's certainly something that's very important for us to talk about, because it can be a real grieving process to lose a job or career - or an education that we have invested our time and energy into for many years. There are many other losses associated with illness, many of which are just as devastating!

So, my questions for everyone reading here today are :

What were you doing before you became sick/disabled? What did you lose when you became sick? and How has your life and your future changed as a result of these losses?

Before my M.E. became severe, I was working as a Neonatal Intensive Care Nurse, looking after premature and sick babies on the regional NICU unit. It was a really amazing job, and an opportunity to do something that really mattered! I quite honestly really loved that job!! Nurses in this country don't exactly get paid an amazing salary, but it was good enough to live comfortably - and as I worked my way up, would have become pretty good.

It was 8 years ago now that my ME relapsed, and I became housebound and eventually had to give up my job. That's 8 years of experience in one of the best UK NICU units, lost. A career in shatters. Had I kept working there, I could have been a sister by now.

Instead, I'm living on disability benefits, and have lost my house because I wasn't bringing in enough money to cover the mortgage (and the extortionate Liverpool council tax fees!) despite living fairly humbly. My credit was damaged because of a graduate loan I took out when I was still working, and was subsequently unable to cover the payments after I quit my job. Even were I to get better tomorrow, (and regain my lost memories and neurological functions that allowed me to actually safely do the job!) the chances of me ever working as a nurse again are small - I would likely have to re-train in some way, possibly even have to go back to uni, because the medical world moves on so quickly - which I couldn't afford after all these years of living just above the bread line.

My self esteem has quite frankly taken quite a battering over the years. I suppose a lot of my identity was wrapped up in being a nurse. I felt like I mattered and was making a difference in people's lives... now I barely see anyone to make a difference!! I've had to learn to see myself through different filters, to not see my value in what I can do, but in who I am. I'm not there yet, but I'm certainly better than I was even a year ago.

Another important loss for me, which I see almost equally to my career, is that I all but lost my support system. When I relapsed, I was just coming out of an abusive marriage, and was trying to deal with all that had gone on during my years of marriage. In one foul swoop I lost the ability to go to therapy, to spend time on my online support group. I have lost both time and depth of relationship with most of my family members, and completely lost my real life friends ... only one of them has stuck with me through my illness, and she (incredibly!) became my carer and has been with me through it all! No-one else could cope with the limitations my illness placed on me, and my friends basically dropped like flies over the first year I was housebound. Since my relapse, I've very much had to go it alone, with my journal to vent to. I think I'm in a fairly good place now, but I can't say it hasn't been hard to be so alone with so much pain to deal with.

However I think the single biggest thing I have lost is the years when I could have been creating a family. I have Polycystic Ovarian Syndrome, which causes fertility issues. It would have been next to impossible for me to get pregnant 8 years ago, and would almost certainly have required IVF. Now ... well, it's never going to happen, and that's something I just have to deal with. I still want to have kids ... I've always wanted to adopt or foster anyway. But with ME, the likelihood of me becoming well enough to have kids and actually be able to raise them (without them ending up as carers for me!!) gets less every year I spend this severely ill, so there's a chance that I may never have children. And of course, the older I get, the harder it becomes to meet someone to spend my life with, too, and that's even without worrying about the fact that I have no opportunities to meet someone anyway, as I don't leave my bed, never mind my house! Quite frankly, I wouldn't willingly inflict my life or limitations on someone else anyway!

Lastly, and simply, I lost my health. The single biggest resource a person has! You can't overestimate just how much that means!!

Don't get me wrong. I don't allow myself to live in regret, or to dwell constantly on these losses. But I believe talking about it both helps us to cope with the loss, and to grieve for it. Maybe even more importantly, I hope that it will also help people outside our situations to better understand what those of us with chronic illnesses actually go through - what it really means to live this kind of life, day in, day out. That's certainly a very current issue, considering the magnitude of media slamming sick and disabled people, and painting us as weak, lazy, and selfish people who place a burden on society without ever giving anything back. Worse, they see us as liars, out to bleed the welfare state dry without any substantial or even real illness or disability! Society's perception and understanding really need to change, and the only way that can happen is for them to see the truth of our lives. And so I write my truth, and hope that people can truly hear it. :)

"But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not." ~ Julie Neraas ~

I would really love it if you guys would share your stories, your previous lives, your losses and your hopes, with me here - with each other. Comment away! :)

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! :)

The Lives We Have Lost - Reader Participation Post

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Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

I noticed today that there is a new article, and video, by The Wall Street Journal reporting on the Lyndonville New York cluster of CFS - one of around a dozen such clusters around the World. It's the best press I've seen in quite a while, and it was such a nice change from all the bad press that the PACE trial has given us, that I decided to post it here. :) I wish it would get picked up by the UK news channels, but I imagine I'll be disappointed there!!

The article, written by Amy Docker Marcus, is titled The Puzzle of Chronic Fatigue Syndrome and reports on Dr Bell's (the GP for the area) efforts to research the possible role XMRV may have played in the cluster in his town. He has been treating people affected by the outbreak since the mid 1980's, and this seems to be the closest they've come to finding out what happened to cause such a cluster. Many of his original patients are still very ill, in a lot of pain, & often severely disabled decades after their initial symptoms began.

Dr Bell has had many of his patients from Lyndonville tested for XMRV, a recently discovered retrovirus which could possibly be part of the cause of Myalgic Encephalomyelitis (ME) / CFS, and has found that a high percentage of those tested are indeed infected with the retrovirus. I can only imagine both the hope and fear this has caused amongst his patients. Hope that finally something will be done, that a treatment may be found, or even just a single, validated test for the illness. Fear that this new retrovirus research will be repressed, like other such projects have been in the past.

You know, it strikes me as insane that a disease known for occurring in these types of clusters would be painted as psychological. In what universe does that even make sense?? Essentially what the psycho-social rabble are saying is that these clusters are caused by some kind of mass hysteria. What a load of rubbish!! There are hundreds of people in some of these clusters - it's completely realistic that every single one of them is putting it on, or is in some way mentally ill. So many clusters, across the whole world, many of them beginning at around the same time - that's something that immediately and obviously says there's a good possibility of the cause being an 'infectious agent' - viral or environmental, to any right minded person. It's a tragedy that the issue has been either ignored or maligned by doctors, researchers, and the media ever since the 80's!

Here's a copy of the WSJ Video report. :)

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! :)

Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

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So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

With all the media rubbish about 'ME/CFS' that's intensified over the last couple of weeks - not to mention the recent changes to the UK benefits system which are going to make things much harder for those with Neurological ME, I've found that quite a lot of frustration has come to the surface which I usually try to keep more or less buried because it takes too much energy to deal with all the emotions.

Something I really hate is that so many people, particularly in the UK, see M.E. as some kind of 'malingerers disease', where we enjoy sitting around being lazy each day, living the high life, never having to bother with work because of our state benefits!! And well, you can't blame them, in some ways, because that impression has been thrown out into the world at every opportunity, through the media, medical schools, psychiatric research projects, and the opinions of the benefit agencies & insurance companies - not to mention the chronic over-diagnosing of this illness, where people who are not neurologically ill are given a diagnosis of ME, (Or rather, ME/CFS) when they are actually burnt-out, depressed, or in some other kind of fatigue state. But the truth of the matter is that those beliefs expose an inherent ignorance about what life is actually like for those of us with severe ME.

I've spent the last 15 years hiding as much of this illness & it's affects as is humanly possible from the people around me, out of shame and fear. It shouldn't have to be that way. We sure wouldn't expect someone with Cancer or Aids to feel they have to do so, right? And I don't want to be that person anymore. I want to get used to being more honest about what I'm going through instead of pasting on a smile and pretending I'm fine while you're here ... then crashing the moment you walk out the door!


I've had M.E. for 15 years now, & I don't think I could even begin to explain the utterly devastating affect this illness has had on my life. I lost a career that I loved. (nursing in a NICU unit, which I fought to keep pursuing for 8 years after I first became ill, despite extreme exhaustion & pain - I certainly don't think that is representative of a person who is looking for an excuse to not work.) I lost the ability to have stable & secure finances; the chance to find a partner who loves me, settle down, and have a family; a whole host of friends who couldn't cope with my complicated situation; my house - as disability benefits (benefits that I actually had to go to tribunal to get, because the doctor who 'examined' me didn't believe in M.E) didn't bring in even near enough money to cover my mortgage (At age 34, I now live in one room of my parents house - a high life indeed!); I've also lost the entire last 7 years of my life (for which time I have been housebound, very often bedbound. For the whole of the past year, I've been unable to even sit up in bed for more than a few minutes at a time - and even that causes pain & extreme fatigue afterwards.); My social life; The ability to walk my two dogs who I love more than life itself; and the right to live with dignity and respect are all gone now too - & that's only the things I can think of off the top of my head!

If one of those people who believes I'm just a malingerer could spend just one week living my life, there's no question in my mind that they would change their position.

Right now, about the only contact I have with the world around me is either through my carer, or on the internet. (I count myself lucky to have that ability as there have been many times over the years when even that was impossible!) Believe it or not, I found out a couple of days ago, on facebook, that my father (Whose house I live in) is making the move to self-employment. I barely see him for a few minutes a week - and the result is that I have no idea what's happening in the lives of my loved ones.

If I manage to go to the bathroom more than twice in a day, then that's a very, very good day. Two times a day is normal - and even that is a battle! I fight with my own body to have a shower once a week. It often takes me up to 2 hours because the crushing fatigue is so disabling that I have to rest every few minutes even using a shower chair ... but I'm too stubborn, proud, and guilt-ridden to ask for help. (though there have been periods in the last few years when I've had no choice but to have my carer help me bathe - Trust me, that is NOT something I would have put up with if I could simply make myself well again with exercise, diet, therapy, anti-depressants, etc etc etc!!!) I'm then wiped out for 2-3 days afterwards. I can't remember the last time I wore make-up regularly, I haven't had a proper haircut in years ... we just take a pair of scissors to my pony tail when it's getting annoyingly long.

Speaking of guilt, that's something else you wouldn't want to live with. My best friend before I became severely ill, has now been caring for me for the last 7 years. She's amazing and I literally couldn't survive without her, but I live every day with the guilt of the burden I'm placing on her. Worse, she's now developed post-viral-syndrome herself, & I can't help but be worried that she may have picked some viral trigger up from me. In addition, since my carer has been so ill, my 60yr old mother has had to start helping out with my laundry, and other jobs, only a few years after she herself became ill with Multiple Myeloma. The pain of all that guilt sometimes feels almost unbearable, like a physical weight on me!

I live everyday in pain, rationing my painkillers as well as I can because I hate taking them. (Another guilt to live with!) Dull pain, Sharp pain, numb, buzzing, urgent, weighted, spasms, migraines - the list goes on!) Sometimes my pain is so extreme that even wearing clothes or the weight of my (lightweight!) blanket on me is too much. I struggle to spend even a few minutes talking with a family member, and crash right afterwards. Light hurts my eyes. Noise hurts my brain. Both send me into a state of overload where it feels like I'm being interrogated! I have blood pressure drops when I stand (or even sit) that make me feel like all the energy is draining right out of my feet. Intense adrenaline rushes, followed by huge crashes. Palpitations. Crazy sweating - as though I have a bad fever only I don't. Insomnia, hypersomnia, (Oh, the irony!!!) sleep cycle reversal. Actually I have a list of symptoms so ridiculously long, (I haven't even got close to naming them all here!) that I felt stupid when I recently presented it to my doctor - who basically had no idea just how bad things are for me as I can rarely make it to the surgery, and she's unable to do home visits. (& this is one of the best doctors I've had since I became severely ill.)

At my worst over the last 7 years, I've had years where the vast majority of my time has had to be spent in a darkened, quiet room, staring at the wall. I've had months where on my worst days, I would be paralysed for hours at a time, not even able to lift my finger, never mind reach out and take a glass of water to drink.

>
My neuro symptoms drive me insane. (Haha!) I swear my iq has dropped 50% since I got sick. I can't remember things, (including both old and new memories) I can't recall words, or I come out with the wrong one. (That of course is providing I can actually find the energy to speak at all) I have brain fog so severe at times that I trip over my words and certainly can't make my mind focus on something I want to do, no matter how important it might be. I can't fill in a form by myself. I can't make my mind up about anything. I have problems hearing speech, or the tv, not to mention making my mind understand what's being said. I constantly zone out. A simple conversation with my best friend is exhausting and after a few minutes I just can't concentrate anymore, and my body starts to feel the post-exertional malaise - cos yes, even mental activity can set that off! (The brain is a muscle, after all, which requires energy to function!)

On top of all that, there's been loneliness, grief, sadness, anger, the inability to attend funerals and weddings, or important family events, Christmas days spent in bed. And the stigma, judgement & ignorance of people who don't understand (& aren't willing to try because of all the negative media about M.E.), not to mention medical care that can barely be called care. It's more than enough to boot you in the chest when you're really down. This illness just eats away at you, your life, & your coping abilities. It destroys family life. It damages your sense of self and worth. It takes away the liberty to be the person you feel really are.



How can anyone who's never lived with M.E. ever really understand what a price we pay to live this 'high life'??

Nobody chooses to live this way. It's forced upon us - and we have to learn to deal with it. The only other option is unthinkable - and we fight that option along with all the other fights, for the sake of the people who love us - and because we really do want to find enjoyment & happiness in our lives.

I just wish that the people spinning ME as a psychiatric illness would stop and listen for a moment. Choose to care about us as individuals and realise that something much more is going on here.

Why doesn't medicine learn from past mistakes. Parkinsons, MS, Aids, Epilepsy - so many illnesses, all treated with disbelief, prejudice, and cruelty, & labelled without scientific proof as hysteria, depression, hypochondria, etc. Those previous beliefs were proved to not only be wrong, and unjust - but also stupid and dangerous because so many people died before the medics and governments started to pay proper attention - not to mention the millions of lives which were wrecked in the process.

ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive - but really, why would anyone be surprised by how strongly we feel about this and how hard we're willing to fight to create change??!!?? We're desperate. It's that simple. I've been living with ME for 15 years, and in that time, nothing has really changed - the same old stuff is happening over and again. I'm not radicalised, I don't send 'hate mail' or bomb cars, for heavens sake. I just don't agree with anyone who says that my illness is all in my head, and I'm willing to say so.

And that's my epic rant complete. (Sorry about the crazy length!!) All I can do now is try to move on, to pick up the pieces all over again and deal with the emotional fallout of this latest injustice ... and remind myself that change will come! Facts & evidence will eventually appear that are absolutely irrefutable, like they have for other illnesses before ours, and action will have to be taken.

What have your greatest losses been over the course of your illness?

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! :)

So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

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There Will Never Be a More Beautiful You!

Thoughts on Negative Self Image

I was browsing the net yesterday and noticed one of those ad's for some kind of photo enhancing software, where there was a photo of a woman before and after they had manipulated the image. God it made me sad ... and so angry! In the first photo, the woman was beautiful and natural - and they'd taken that image and taken away everything that made her, her - turning the whole thing into something completely unattainable (they even removed her freckles!!), and quite honestly, nowhere near as beautiful.

What kind of a world do we live in when we're teaching our kids, not to mention ourselves, that they can never be beautiful??!!?? Where we believe that the photo's on the front of Elle or Vogue are real - that the models in the images actually look that way in real life. It teaches people lies. It teaches us (guys, not just girls!) to hate our own bodies!!

And it's not just the media to blame either. People are cruel to each other, from childhood right the way up to old age. Kids are teased, bullied, & abused at school (and even at home!) for being overweight, 'ugly', for not having the right clothes - for being different in any way, basically. Tiny kids as young as 5 or 6 are getting eating disorders because they believe people see them as fat, ugly, & disgusting - and they go on to be cruel to themselves, repeating all that same rubbish within their own minds, over and over again, for years - sometimes for a lifetime!


I've had body image issues, along with self esteem issues in general, since I was in infant school - that's kindergarten for you American's. I'm 34 now, and I still hate my body, my face, my weight, myself!!! I still don't know if what I see in the mirror is what I really look like! Schoolyard bullying started the whole thing off. For me, I was different purely because my family were Christians. I was isolated, degraded, and punished because I wasn't like the others. I was bullied in FIVE different schools, right up until age 18 - and every single one of those bullies used taunts about my physical image as an arrow straight to my heart.

And guess what? I went on, only around 4 years later, to marry a man who didn't know how to love me, and who repeated over and again all those messages the bullies at school had sent my way - only more severely, more violently - & with an even more damaging result. I didn't even realise for a long time that the things he was doing and saying to me weren't ok, because I'd spent almost my entire life being treated like that!

This man, my husband, the man who I loved and who I thought loved me, encouraged me to take laxatives so I'd lose weight; & he often refused to have sex with me without my being hidden under a sheet, with the lights out ... and it made me feel such deep, traumatic shame about myself - I can't even describe it to you. I hated myself!! And you know, I wasn't that fat, or that 'ugly'. I had some nice features, actually. I can look back now and say, ok I wasn't a beauty queen, but I wasn't that bad - and I made a lot of effort for him - but nothing was ever enough. Because the issue wasn't with me - it was with him


I think back to that time in my life now, and I think my view of myself was so broken. (I think it still is broken, though perhaps not quite so badly.) I think societys view of me/us/you is broken. And I'm angry at myself for letting other people, and the media, tell me how to view myself - not to mention angry at them for treating me so badly. I don't know what the answer is. I don't know how to change how we view & treat each other & ourselves. I just know that I don't want to live like this anymore. I don't want to look in the mirror and see some ugly freak looking back at me - I just want to see me.

It's National Eating Disorder Awareness (NEDA) in the US this week, and one of the featured organisations is Operation Beautiful, whose goal is to end negative self talk, one person & post it note at a time! They encourage women to leave encouraging notes on bathroom walls, for other women to read. When you see the huge amount of notes posted on their site, it somehow gives you faith in the human race again. So - post a note, take a photo, and send it to Operation Beautiful. You might just change someone's day, or even their life!

I'm confined to these 4 walls, so this is my post-it-note to all of you! You are beautiful. You are unique! Don't ever tell yourself otherwise!

“We do not need to change our bodies; we need to change the rules.”
~ Naomi Wolf ~





Small addition to original post :

Please also check out this music video which I happened upon after posting this blog this morning. It's by Jonny Diaz, and it's called 'a more beautiful you' - absolutely perfect for this post!

I've had some great feedback on this post so far - just wanted to say thank you! It wasn't easy to write about some of it ... but it was well worth it! :)

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! :)

There Will Never Be a More Beautiful You!

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How should we deal with this latest psychiatrist & media attack on M.E. patients??

So, the new Pace trial results were released online in the Lancet tonight. Yet another UK trial carried out by psychiatrists, with a patient population made up of people with the umbrella diagnosis of 'CFS', and, I might add, not including any patients who are severely ill - which predictably concluded that Cognitive Behavioural Therapy & Graded Exercise Therapy are the best treatments for ME - and in fact can even result in a complete recovery!

The study was based on the premise that in ME, the persistance of symptoms is caused by 'wrong illness beliefs' (ie believing you're ill when you're not), causing a fear and avoidance of activity, resulting in a deconditoning of the body due to lack of activity. (A premise which is not only completely ignorant of reality, but also deeply insulting!) You may at this point wish to note expert Dr Paul Cheney's deep concerns about graded exercise therapy, and Professor Hoopers Response to the PACE trial.

Honestly, my first reaction to these results was along the lines of 'same old, same old'. I mean, it's basically the same stuff psychiatrists, the government, and the benefits system in the UK have been harping on about for years now. I can't say it doesn't affect me, but you try to grow immune, you know?

Then came the storm of media articles, links popping up everywhere on twitter, and boy did my temper become engaged!!! I swear, my blood pressure must have doubled within seconds - all I think rushing immediately to my head, and perhaps beginning to boil while it was at it. I was fuming!




According to the hair-raisingly insulting title of The Independent's article, we should all just get out and exercise, and we'll be fine. Oh, and our illness is marked by "poor memory and concentration, disturbed sleep, aches and pains and disabling fatigue" - Oh yes, that perfectly sums up this life-destroying illness, doesn't it!!

The BBC's article was little better. Here they summed it up as 'Brain and body training treats ME'. Here our symptoms are described as mere 'tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep'. If only!!!

The New York Times, thankfully, had a slightly more cynical & realistic view of the trial. (though this will make little difference for us here in the UK, it is nice to see!) It was a fairly balanced article, clearly showing the short-comings of the trial.


....................

It took me quite some time to calm down after reading these articles. I don't often get quite so affected by these kinds of things, but for some reason it really caught me off guard tonight. I was actually on the verge of crying, I was so angry.

I think ... I think I'm just so tired of all this. The politics of this disease are as exhausting as the illness itself - and there's something really very wrong with that picture! We shouldn't have to fight for the right to be respected, to be valued as members of the community, and to have biomedical research funded into our illness.

What really upsets me about media like this is the influence it has on how the general public see M.E., including of course our friends and family. There's already enough of a problem with misconceptions and wrong & unfair judgements on us. It's heartbreaking to think of all the people out there who are so desperate for support and understanding from their loved ones, and instead receive impatience, lack of understanding, rejection, and even downright cruelty. I've been on the receiving end of that myself a hundred too many times.

So what to do now? Well, the only real option, given that I'm not well enough to do much to actively fight this situation, is to put my feelings away in a box and try to move on, move past, and not live in this bitterness. Try to breathe again. How else are we meant to be able to deal with this crap?

Warning : Compressed Anger!!!!

How are you guys feeling about this situation ... and how do you deal with those feelings in this seemingly never-ending bombardment of disappointment?

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! :)

How should we deal with this latest psychiatrist & media attack on M.E. patients??

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