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About Jay

I've been an ME sufferer since 2001 and now that I am not as ill as I used to be, I share my experiences in the hope that something I say can bring someone else hope or even just so they can learn from my mistakes.

ME/CFS Book Review: Love and Best Witches by Maria Mann

Love & Best Witches ME

Love & Best WitchesIf you or someone you know, suffer from ME, another chronic illness or even just love a fantastical and funny yarn, then ‘Love and Best Witches‘ is for you. I finished this book yesterday and still feel warm and happy after taking a magical journey with 9yr old Louise and her Auntie Nettie who is teaching her niece all about being a witch in her unique, magically funny way, despite suffering from M.E.

I am a huge fan of Maria Mann’s first book Verity Red’s Diary: A Story of Surviving M.E., so I was thrilled when I found out she had published another book. The author is a fellow sufferer of ME, and what I love about her stories is that even though the illness peer’s out at you, it is the humour and magic of her writing that strikes you the most. This is a great gift for those who suffer from the illness, but also a fabulous treat for any reader.

So, let us explore ‘Love and Best Witches’ the latest offering from Maria Mann.

“Once upon a time there was a little girl who had a special pen-friend, her auntie Nettie. Auntie wasn’t very well because she had an illness called M.E. but she could write lovely letters when her hands didn’t ache and she was fun to be with, when well enough for a small visitor, if she hadn’t been over doing it.

Auntie over did it if she spent too long in the kitchen baking Harry Potter chocolate frog cookies or making magical sparkly lemonade; travelling on her broomstick in cold weather without wearing witchy thermal underwear, or doing spells involving: lots of chanting, anointing, collecting of herbs, picking up of heavy goblets, picking up of heavy goblins, ringing of bells or wand waving.”

– Prologue ‘Love & Best Witches’ by Maria Mann

The story is sweet and every sentence will make you smile, if not cackle along with your new witchy friends. It is told by 9yr old Louise, who loves spending time with her witchy auntie Nettie. It is suitable for young and old alike, although some of the younger readers may not get all the witty references and subtle jokes found woven through the book. You definitely don’t have to be a sufferer of M.E. to enjoy the wonder and magic contained within the words and the amazing artwork contained on each and every page.

I read on Amazon that “The book was written with people who have M.E. in mind, and are often unable to read or concentrate for long. There are illustrations or verses on most pages, to break up the text. The short chapters will make the book easier to put down, so the reader isn’t tempted to tire him or herself.” I would have to disagree; I couldn’t put the book down! Maybe I just couldn’t help giving in to the temptation of reading about what Louise and her Auntie Nettie would do next! Even when I decided it was time to put the book down to get some sleep or eat, I just couldn’t resist having a quick flick ahead to see what beautiful artwork I was missing out on.

There are also recipes contained within the book and I am eager to try them out, especially the homemade ‘Witchy Lemonade’ and the ‘Esbat Gingerbread Men’. However, I don’t think my witchy skills are up to getting the gingery treats to sing and dance like they did for Louise and Nettie!

I must admit that although the book made me cackle frequently (you should have seen the man’s face who was sat next to cackling me one morning on the tube!) it also overwhelmed me to the point of tears at times. As a sufferer of M.E., I am all too aware of the toll this illness takes not just on your body, but on your relationships and your spirit. Yet, here was Maria Mann, a fellow sufferer, writing, illustrating and publishing a book which many healthy people only dream of doing and with her words and artwork going to a place so beautiful, so magical and just so light-hearted and funny…like I said, it overwhelms me!

If you want to take a walk on the magical side, then why not hop on your broomstick and join Louise to go visit Auntie Nettie with Love & Best Witches…

Visit the Author…Check Out Maria Mann’s Official Website!

All Quotes and Images Used With Permission from the Author Maria Mann
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ME/CFS book review: Verity Red’s Diary…

Verity Red's Diary - A Story of Surviving ME ME

…A Story of Surviving ME by Maria Mann

Verity Red's Diary - A Story of Surviving ME‘Verity Red’s Diary’ is one of those books that will always stay close to my heart. I will never forget the way it made me feel or the way it resonated so exactly with the way I was feeling.

At the time, I had been suffering from severe symptoms for over 4yrs and had only been given a diagnosis of ME (Myalgic Encephalomyelitis) a year earlier. I had spent that year in denial; no way could I get ill! I would beat it the way I beat everything, so I had tried every treatment I could to get better without actually stopping to acknowledge that I had a serious chronic illness or accepting the changes I would have to make. I just wanted my life back and I was going to do everything in my power to get it back! Of course, all I succeeded in doing was getting increasingly ill. I was fed up; I was ill, depressed and almost totally socially isolated as I just couldn’t handle trying to explain the inexplicable to anyone anymore. I needed to know that I was not going crazy, that there was at least one person out there in this big, crazy, scary, alien world who understood what I was enduring.

Cue Verity Red!

“I was a busy speck of dust once, milling about with other specks in the great living room of everyday life. Now the great yellow duster of chronic illness has flattened and trapped me, and like a duster that’s all used up I’ve been thrown in the washing machine to go round and round in circles. At the end of my cycle I’m all limp and screwed up.”

“Cleaned the kitchen floor. Well; not exactly the whole floor, half of it; about a quarter really. And it wasn’t a proper clean with a mop and Flash and me standing smiling proudly at a job well done, the tiles sparkling, the enamel on the cooker twinkling, the sun shining through the window on to clear polished work surfaces and saucepans you could use as a mirror to do your make-up. The only flashing being done was my knickers showing through a big hole in the bum of my leggings, as I crawled on my hands and knees using damp kitchen roll (lovely autumn leaf pattern) to wipe muddy paw prints near the cat flap and crumbs near the cooker and bread bin area. I now have the energy to keep the filth at bay, I’m so fortunate. Must remember to lay fresh sheets of Adscene by the cat flap every time I pick up the dirty soggy pages, which isn’t very often…”

Extracts from ‘Verity Red’s Diary’

What initially drew me to this book was that firstly, it was the diary of a person who had M.E.; someone who was also trying to ‘survive’ and secondly the name ‘Verity Red’ (Veri tyRed) hinted at the author being someone who had managed to retain her sense of humour; something I was afraid I was rapidly losing!

I was not disappointed. This book was a turning point in my life. Verity Red was that friend we all need; she showed up when I most needed her, to make me laugh, to share my tears and just to get downright silly at times! Maria Mann manages to accurately show the sadness, the madness, frustration and even the blank boredom that make up the lives of M.E. sufferers by taking us through a year in the life of Verity. She puts into words what most of us with M.E. only just have enough energy to feel. So often I’d be reading a part and it so eloquently summed up exactly how I was feeling that I’d find myself muttering “That’s me! That’s me!” while I actually cried tears of relief!

The diary of a M.E. sufferer could so easily be full of despair and gloom, but not in the capable hands of Maria Mann, who brings magic and humour to lighten and brighten the story while not losing any of the genuine emotion.

Even if you’re lucky enough to live a life untouched by ME, you’ll still laugh, cry and enjoy the illustrations! After all, there’s a little bit of Verity Red in all of us!

Visit The Author…Check Out Maria Mann’s Official Website

All Quotes and Images Used With Permission From The Author Maria Mann

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Voices from the Shadows

Voices from the Shadows ME

A Powerful Story of Courage in the Face of Tremendous Neglect and Abuse

Voices from the Shadows

“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV”.

Nancy Klimas, leading AIDS and ME/CFS physician and Professor of Medicine and Immunology,
in the New York Times (15th October 2009)

 

‘Voices from the Shadows’ is a powerful, hard hitting hour long documentary that literally moved me to tears. It illustrates the abuse and neglect ME Sufferers face from the UK medical establishment by telling the stories of five sufferers of Severe ME and their families.

Hidden away in dark and silent rooms for years on end, men, women and children are suffering. Although severely ill many are disbelieved and denigrated; their lives shattered by medical neglect and even abuse by the very professionals who should care for them. This desperate situation has been denied for too long.

Voices from the Shadows unmasks some serious issues which are causing irreparable harm. This film uniquely reveals the love, courage and determination of five sufferers and their families as they struggle to regain their health.

Taken from the DVD sleeve of Voices from the Shadows

 

I had heard about ‘Voices from the Shadows’ via Invest in ME but it was the death of Emily Collingridge that finally prompted me to order my copy of this documentary. The morning it arrived, I was feeling very ill after a horrible night of little sleep, however I decided to watch it immediately.

What I liked about this documentary was that it didn’t go too deeply into ‘what is Myalgic Encephalomyelitis?’. It is a witness to the experiences of severely ill ME sufferers; it is their voice from the shadows. It clearly showed the effect that current policy and medical practices had had on the lives of the people shown in the documentary. I already knew of Linda Crowhurst, Lynn Gilderdale and Sophia Mirza, but it was still difficult to watch their suffering.

Although this film may be of interest to ME sufferers, I believe it is more important that it is seen by as many non-sufferers as possible. Those of us unfortunate enough to have our lives blighted by this illness already know what it feels like. We are all too aware of the neglect and abuse; of how no one believes us even when we are racked with pain from head to toe. I would ask that others watch this and question how civilised our society is where the weakest are being tortured in such a barbaric manner. Where doctors who dare to help us are reported to the General Medical Council and face being stricken off the medical register.

Please consider visiting the Voices from the Shadows official website to find out more about this film and about ME. A warning though, those not dealing very well with their illness may want to avoid this movie.

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What’s in a name? ME vs CFS

What's in a name?: ME vs CFS ME

What's in a name?: ME vs CFS

Why ME vs CFS? There is much debate about the names ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) and the other labels our symptoms are given. There is also much debate about what ME should be called and why it has come to be known as CFS and I would refer you to What Is ME? What Is CFS? for a comprehensive account of the issues and history behind the controversy.

My objection to CFS is simply that it makes a mockery of a very serious illness. Examples that have been used many times by others include how you would not even think of referring to Alzheimer’s as ‘Forgetting Disease’ or to Parkinson’s as ‘Shaking Disease’, yet somehow we get labelled with Chronic Fatigue Syndrome as if we’re just tired. Furthermore, if the extent of our illness is not understood, then how are we ever going to receive the appropriate help and support from medical practitioners and the authorities?

I received a letter from my lovely aunt in New York. She told me to stay positive and that I would get better, “Just look at Cher, she was so ill, now she’s performing daily in Vegas”. I can’t even remember if I attempted to explain to her that I do not have whatever Cher had. Dr John H Greensmith makes a similar point when he writes, ME is not the same as CFS.

I do believe that it is important and necessary to make the distinction between ME and CFS, and I usually use ME when I refer to my illness. However, when I write about it I may use the moniker ME/CFS for convenience and because it seems to be the most widely accepted compromise. I’m sure I will offend many people when I do this, but my illness has been referred to as both and also there are people out there who do not have the option to say ME instead of CFS. Also, I’ll be writing about my life with a chronic illness and the experiences I write about can apply to so many other people suffering from other illnesses like FM or RA.

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Why Am I Writing About ME/CFS?

Why it is so important for ME sufferers to tell their stories... ME

Why it is so important for ME sufferers to tell their stories...

When ME/CFS bulldozed its way into my life over a decade ago, I was totally unprepared for the changes it forced on all areas of my life. There were times when I coped better than at other times, but whether I was feeling Denial or Anger, whether I was Bargaining or Depressed and even when I finally Accepted, I always had the constant desire to speak to someone who understood (even when I couldn’t actually speak!).

I quickly learned though that the only people who understood were my fellow sufferers. There were days when the disbelief in the faces and words of my friends and family made me question my own sanity and other days when I felt like I would be crushed by the empty loneliness that had become my life. But I was saved by strangers; some of whom became the dearest friends I have. They understood, they knew. I might be in Hell, but they were burning right beside me.

These brave and beautiful souls helped me so much by just sharing their stories with me. So, here I share my story with you. Maybe you’ve been newly diagnosed and are not sure what the future holds for you, maybe ME/CFS or any chronic illness has been the monkey on your back for so long you wonder if anything will remove it; for you I write this to say, I know you’re in Hell, but I’m right here beside you and do not question you or your symptoms because I know how you feel. Maybe I can share some hope with you too. For those of you who do not have a chronic illness, I want to give you some insight into what it is that us ME/CFS sufferers go through. We are much maligned and abused but this is slowly changing.

I had started to write posts on my main website, but I felt it was time my ME/CFS side had its own blog. I’m not claiming to be a medical expert, at the end of the day though, this is my story, the story of Jay, from me to ME back to a brand new me again. I make it sound like the journey has ended, but in many ways, it is only just beginning. Welcome to my wonderfully Foggy World of ME/CFS.

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