Monday, 26 March 2012

Emily Collingridge 1981-2012

First of all I would like to warn everyone that the tone of this post will be fairly sombre. I promise to return to a more upbeat tempo with following posts but today I would like to dedicate a small part of my day to a family friend who has recently passed away.

I am happy to say that I mananged, despite the severity of her disease, to have had a few conversations with her. These short sentiments were always over text as Emily had very little energy avaliable and even the smallest tasks can seem like climbing mount everest, twice, blindfolded whilst carrying double your bodyweight on your back.

As someone who has suffered from chronic disease (Lyme disease) this heartfelt appeal simultaeneously brings back the awful memories of how I myself felt similar to a couple of years ago before I started my treatment but also gratitude that I have managed to regain a great deal of health and am able to do so much more than I could previously. I can now dare to hope that those years are slipping into my past and that my present and future are becoming ever brighter.

The subject of chronic disease is incredibly close to my heart. I do feel that the spectrum or "autoimmune" and chronic diseases are misunderstood and that we simply do not know enough about them with little to offer in the way of treatment.

I would like to share one small short story before I post the appeal, of one of our messages we sent. I was only a short time into my treatment and was starting to get better. Emily had asked me how I was feeling and I had replied that I was feeling frustrated and lost. I was tired of lying in bed or slowly breathlessly amble slowly around the house. I wanted to go outside, go to the cinema, go to school, do anything other normal kids do. Emily replied that it must be so difficult for me and that people often get lost in the wake of chronic ill health when you can't keep up with them. People that we were previously close to do not know what to do and as you can't do anything there are more exciting things out there. My priority should be to rest and get better. If I was ever frustrated or wanted to talk to someone then she couldn't promise she could talk as it would wear her out too much but that I could always text her and she would reply as soon as she possibly could. Focused on my own situation at the time, I didn't realise the energy that writing this text must have taken out of her. With her being so much more ill than I (I was housebound whereas Emily was completely bedbound), that even in her situation she still had the heart to offer her help me without complaining of her own situation. With a purely empathetic and caring answer.

Rest in Peace x

Emily Collingridge wrote an appeal about a year before she died. This is the appeal reposted from;

" Emily mother’s Jane has asked for these last written words from Emily to be reposted. About a year ago, Emily tapped them into the keyboard of her smartphone over many weeks – while she still had the strength in her body to do so.
Emily’s Appeal
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope.” "

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