Remembering Emily Collingridge

Emily Collingridge
1981 - 2012


Emily Collingridge's funeral will take place today, Tuesday, 6th November 2012 at 12.45pm. My thoughts and heart are with the family today, and I wanted to just remember Emily here, and the brave fight she fought, for so many years, with the monster that is M.E.!! Thank you Emily for all that you shared with us about your life, all that you taught me, and for all that you were as a person. You will be sorely missed by many, and are a huge loss for our community of people with ME, and 'Spoonies' in general. We will not forget!!

If you would like to learn more about Emily's life with Myalgic Encephalomyelitis, please visit http://www.severeme.info/about-emily.html

The following is a copy of the information given by Emily's parents for all Emily's friends & supporters, copied with permission. There are some things listed that you can do today to pay tribute to her life. Let's stand together as a community to remember and honour Emily!

Her parents, Jane and Jim, wish for it to be a private ceremony but say, “We know that people will be thinking about Emily and holding her in their hearts as they are so touchingly doing at the moment."

As many people will want to pay tribute to Emily, the following suggestions for a virtual funeral have been put forward by some of her friends and approved by her parents:

1) Light a candle at some point on the day of the funeral. For those too ill to tolerate candlelight, a picture of a candle could be looked at instead, or a candle simply imagined.

2) Read, or have read to you, some of the pieces below. In the first Emily's mother, Jane, shares her memories of Emily. Two quotes have also been chosen as reflecting Emily's spirit. All can be found below.

As Emily was a dedicated campaigner, we also suggest the following as a means of raising awareness of ME:

3) Change your Facebook profile photo (and cover photo if you are on Timeline) to the rose picture below. This can be done on the day of the funeral or before. A suggested caption for the photo is: 'In memory of Emily Collingridge' with the web link: www.severeme.info/about-emily.html (If you are unable to copy the rose picture from this document, it can also be found at: http://bit.ly/RPeahY To add a caption, go to your profile picture and click where it says 'Edit')

4) Share on your Facebook profile the Guardian article about Emily. This has been chosen because it gives a good overview of severe ME, and includes links to the moving piece "Emily's Appeal" that Emily wrote last year, as well as a link to the website of her book. http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome (If you cannot click through from this link, the quickest way to reach the article is to Google: Emily Collingridge Scott Harris. Scroll down to the end of the article and there is an option to share it.) Remember that people are more likely to read it if you include a short message explaining its importance to you.

5) Donate a copy of Emily's acclaimed book, Severe ME/CFS: A Guide to Living, to your local library, hospital, doctor's surgery, or anywhere else where it can help patients with severe ME and those involved in their care http://www.severeme.info


Jane and Jim request that no flowers be sent for the funeral. Donations in lieu of flowers, if desired, can be made to ME Research UK http://www.meresearch.org.uk either direct or through the funeral directors: Francis Chappell & Sons, 41 Sydenham Road, London, SE26 5EX

Jane shares her memories of Emily:

EMILY

Emily was one of eleven babies born on a memorable and busy Good Friday at Dulwich Hospital in 1981.. She came out looking rather squashed and for the first 24 hours slept peacefully leading to her father commenting on what a good baby she was. That didn’t last. For the next few years it was a question of ships that passed in the night as she toddled in to Mummy and Daddy’s bedroom and Colly decamped to her bed!

I think Emily was born organised and quite early on could show her baby sitters how to do up her nappies. From the age of three she was certainly bossing me about and I couldn’t argue as she always seemed to show a great deal more common sense than me. Of course she continued to boss me particularly in the wrapping of Christmas presents, an art she perfected one year when I was called away on an emergency and she wrapped sixty gifts in three days.

Emily was sensitive and shy by nature, but this did not stop her enthusiasm for participating in life. Visits to the Sooty show and the pantomime found her up on stage belting out a song completely out of tune. Much to my incomprehension, unlike me, she did not enjoy dancing classes (though she later loved visits to the ballet) and like me she was no good at most sports apart from a love of cycling and swimming shared with her father. However, she was an ardent tennis fan; this dated back to the day she was trying to spot Mummy and Daddy on the television among the Wimbledon crowds and started asking Gan Gan, her beloved grandmother, all about the game. She also fancied Jonny Wilkinson well before he became famous, but claimed that this had nothing to do with her interest in rugby. She did not miss one England game the year we won the world cup when her screams of excitement sent our Westie, Bella, into a whirl of barking.

Though she was forced to leave school at fourteen because of ill health, Emily’s interest in learning and an enormous variety of subjects was in no way diminished. She educated herself. She was an avid reader and her head was always buzzing with ideas and the next project she wished to tackle. Her way with words was evident in her writing and when talking (which she could do at length and non-stop!). Charity PR had been her chosen career when she was at school and so the opportunity to do this for an ME charity (with tremendous success) when her ME was less severe, though often from bed, was perfect. She later did paid work for Home-Start. Campaigning was in her heart, not only for better awareness of ME, but many other causes. She was highly principled and would always stand up for the underdog. With the publication of her guide to living with severe ME her desire to help others was partially realised when it was greeted with enthusiasm and sold internationally.

Emily was lucky to have many wonderful friends which she largely made through her work and the ME world. She missed her dear schoolfriend, Lydia, whom she regarded as a sister, as Lydia is married to an American and lives in Kansas, but they remained very close and though she sadly never met them in person, she adored Lydia’s children.

I think Emily inherited traits in looks and temperament from both her father and me. But Emily was Emily – clever, feisty, passionate, fun, gutsy and very affectionate.. She tried to look after us as we tried to look after her. We loved her very much and she loved us very much and for that we are blessed.

- Jane Collingridge

Quotes that recall Emily's spirit:

"To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty and to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; To know that even one life has breathed easier because you have lived. This is to have succeeded."

- Ralph Waldo Emerson



"There is the courage that springs from battle fever, or from a desperate emergency. And there is a courage that is rooted in the acceptance of a dreadful circumstance and all that it entails -a courage that brings sanity and cheerfulness and hope to lives that could be utterly consumed by sorrow. This is the courage that endures. This is the greatest bravery."

- Pam Brown



This document can be downloaded and printed. Permission is given to repost it, but please do so sensitively and respectfully. Thank you.

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! :)

Remembering Emily Collingridge

Tweet

The Universe Just Keeps on Giving! :P

Unfortunately, those gifts just aren't always good!!! Sigh.

We just found out today that my GP has suddenly up and left the surgery, with no warning whatsoever to patients (and according to my liaison at the surgery, it was a complete shock to the staff there, too!) and no obvious dr to switch to within the practice, for those patients who only ever saw the Dr who has left, because she was easily the best Dr in the practice and one of the better Dr's in the area.

I have had my problems with this Dr, but most of them were as a result of the area we live in and the restraints of the practice she worked for, rather than her being a really bad doctor ... But despite all that, I'm feeling a bit panicked about this situation!! She was the only Dr there who knows anything really about my condition, and about our situation here at home. (and how would a new GP get to know me when they refuse to do home visits 99% of the time, and I cannot get to the surgery???) She was also treating Anna who has been very ill for a couple of years, again with quite a complex condition. (Anna has Post Traumatic Stress Disorder, too, and really relied on our doctor to be sensitive to that. She's been crying on and off all day, she's so upset about this - which makes me so mad, I can't even tell you!!!) I know, too, that the Dr treated quite a few other very vulnerable patients, so she has left us all very much in the lurch. I feel really quite angry that she gave us no warning at all, and that she apparently hasn't formally handed us over to any other doctor. To me, that is really, really unprofessional!! She was the only Dr I had even a small amount of trust in at the surgery ... And I honestly have no idea what Anna and I are going to do now!! I was invisible enough already at my practice and now, presumably, there will be no-one looking out for me at all! I've rarely even met any of the other doctors!! I just feel so numb about it all. Neither I nor Anna have the emotional or physical energy to deal with this - there's enough to cope with already!

There isn't really any good surgeries in this run down inner city area, so it's not even like things would necessarily get any better if we picked up and moved to one of the other practices - and it's kind of like playing Russian Roulette because you really have no idea what the doctors are actually like until you switch to their practice. (It's not like in America where you can really pick and choose your doctors, and go to meet them before you transfer to their surgery, etc.) It's not such a problem in the wealthier areas of the country, but it can be a serious issue in the poorer areas because the NHS doesn't dole out the money fairly across the country, and because many of the good GP's refuse to work in the run down areas of the country.

I really feel like I just faded a little bit more ... like I was hidden in deeper shadow from the outside world, and I have no idea how to become visible again. :(

'A Fading Girl' by Sarah Allegra, Used With Permission.

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 Universe Just Keeps on Giving! :P

Tweet

Even Caged Birds Sing!

I've been thinking more this week about the nature of grief, and about just how much those of us with severe chronic illnesses, especially those who are housebound & bedbound, actually lose. How much I have lost. How our dreams are smashed, our health, friends, careers are gone, our lives are torn apart & the path of our lives has been irrevocably diverted against our will. I believe that each of us, (and our close family & friends) having lost so much, goes through a process of grieving - one which may in some cases take years, or even be a constant presence in our lives - because each month, each year, more things may be taken from us, starting that process all over again. This grieving process can be made that much harder by the fact that so few people outside of the situation can really understand what we're going through, so a positive support network can be difficult to find.

This grief & loss is so extreme - it affects every single corner of our lives, and our hearts. There are so many things that we each, desperately, miss - and miss out on. It goes so much further than the obvious losses like our health, financial security & careers. We lose friends & family - and our relationships change drastically with the few we do not lose. We are locked away inside our houses, missing out on the fun activities, outings and holidays that our loved ones are able to go on. Some of us may not even be able to see the sun or feel the rain for years on end! We may begin to come up against ignorance & prejudice. Our love & sexual lives change, or sometimes are completely gone! For those who become ill at a young age, childhoods and educations are lost. Conversation becomes difficult or even impossible, meaning we may lose closeness with the people we love. Years disappear for us in almost a vacuum, whilst the lives of our loved ones carry on. Honestly, the list is endless - our bodies really do create a prison within which we are trapped!!

For many of us, especially those with neurological diseases, the things we've lost are now just distant, unfocused memories. Often hazy and difficult to remember or recall. To me, they seem like worlds away from my bed, in my bedroom, where I've been caged for so many years. To me, it literally feels like my past was lived by a completely different person!

The thing is, I believe that, that very grief - that endless depth of pain & suffering, and the daily battle we have to fight to survive it, gives us something very special in return: A deeper understanding of & connection to hope.

Maya Angelou's poem, I Know Why The Caged Bird Sings comes to mind. (You can read this poem in full, below) Reading it again, when I began writing this post, I resonated with the bird in her poem so strongly that it brought tears to my eyes and a slow, painful gasp to my chest! The poem is an analogy for the desperately painful, chillingly lonely, yet also forever hopeful plight of black people at the time of the author's childhood. It is about dreams squashed, and dreams as yet unrealised.

'Little Bird' by Rubyblossom	via PhotoRee

This poem is heart-rendingly sad ... but I don't believe it's about pain, or injustice quite so much as it is about hope - & the strength that we have hidden within us, enabling us to survive whatever comes our way! The hope of gaining freedom from binding circumstances. The hope that dreams will come true. This is the kind of hope and the depth of strength & courage that would move heaven and earth to gain what it most desired!

In the depth of winter, I finally learned that within me there lay an invincible summer. ~ Albert Camus ~

This poem, too, corresponds so strongly to the Emily Dickinson poem for which I named my blog, a poem which has meant a great deal to me. 'Hope is The Thing With Feathers' very much conjures up a beautiful, soaring, never-ending hope, whilst 'I Know Why the Caged Bird Sings', evokes a much more frustrated, desperate hope - but is all the more powerful for it! The hope of freedom surely is one of the most powerful of all hopes!!? It certainly is for me!!

I feel, very deeply inside my soul, a desperate voice dreaming of and hoping for freedom. That voice has never let me down, no matter how hard my struggles or how sick I've become - I still have the hope that things will get better. That one day, I'll ramble easily through a forest, or a meadow full of wildflowers, the sun shining on my face and my dogs at my feet. That I'll walk along the beach, the waves gently lapping at my feet, the wind blowing through my hair. Be able to venture outside in the snow, catching the snowflakes & watching them melt. I dream of falling in love & building a family. I want to adopt some older kids who are struggling in the foster system, or perhaps do emergency fostering. I even dream of having a baby, though age & infertility make it all but impossible now. (I think pregnancy is one of the most beautiful, interesting, amazing & challenging processes we can ever go through in life & I want to know how that feels!) I wish I could play in the sandpit with my nephew who I've barely seen more than a few hours in his two years of life, & easily hold his baby brother in my arms. I hope for days spent with family & friends with no restraints on my energy and no pain holding me back.

As it stands, statistically, I have little chance of a full recovery unless a breakthrough is made in the research of Myalgic Encephalomyelitis - but despite that, & like the singing caged bird, I do have the hope that somehow my life will change and that I will find freedom from the grips of this terrible illness. I accept the possibility of being severely ill for the rest of my life, but I hope for better - and no matter how hard the fight gets, I don't intend to give up on that. The point isn't in whether I ever reach my goals, or whether I recover from M.E. The point is that I need the hope that I will get there. It gives me the courage to continue, and helps me to find some level of contentedness & happiness in my present. I have goals & dreams, and no matter how scared I am that those things won't come to pass, I don't want to let go of them, & I'll fight for them! Simply put, I believe that there is no point to life without hope.

'We Must be Free' - By Nanda Correa
(Posted with Permission & Much Thanks!)

I know why the caged bird sings A free bird leaps on the back of the wind and floats downstream till the current ends and dips his wing in the orange sun's rays and dares to claim the sky. But a bird that stalks down his narrow cage can seldom see through his bars of rage his wings are clipped and his feet are tied so he opens his throat to sing. The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom. The free bird thinks of another breeze and the trade winds soft through the sighing trees and the fat worms waiting on a dawn-bright lawn and he names the sky his own. But a caged bird stands on the grave of dreams his shadow shouts on a nightmare scream his wings are clipped and his feet are tied so he opens his throat to sing. The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom. ~ Maya Angelou ~

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! :)

Even Caged Birds Sing!

Tweet

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

Tweet

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.

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.

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.

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.

Some 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.

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! :)

An Ocean of Grief

Tweet

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!!

Tweet