Tuesday, 25 December 2012

How I Survived Christmas and the Movies That Helped!

It's the evening of the 25th as I write this, so Christmas is not quite over, but this will be my last Christmas post of 2012.  The last couple of days haven't been great so I was expecting today to be extra depressing, but I've actually had quite a good day.

I woke up this morning and just lay there for ages listening to the rain.  It was lovely and peaceful and I can't remember the last time I was so relaxed upon waking.  I chatted to my sister Nik for a while via Blackberry messenger; she's been very sweet and made herself available while I've been in my Christmas slump (Thank you Sis - Love you!) and then around 1pm I took a nap...for several hours.  So when I woke up in the afternoon, I felt quite rested and was ready to think about food and what I was planning to do for the rest of the day.

I spoke to my parents and then made myself some lovely pasta with salmon (Merry Christmas Baby!) and knew that I was going to indulge in some of my favourite Christmas movies, but before that, I needed some Stewie Griffin.

Christmas Alone

This is my very first Christmas alone.  The common idea of Christmas is one of families getting together, of spending time with loved ones, not of being alone.  But for whatever reason, there are plenty of people that spend Christmas alone.  I actually chose not to attend the family gathering this year, and at the time that I made that decision, I was really happy about it.  I believe my exact words were "After 36yrs, I deserve a Christmas off".

However, as I sit here late on Christmas Eve writing this, I do miss the fact that I won't have my family around me this Christmas.  They're crazy and the ensuing family dramas are way too much for my fragile health this year; I know all that, but it doesn't change the longing for Christmas.

Monday, 24 December 2012

A New Lesson in Loneliness For a ME/CFS Sufferer

My partner, Daniele, flew back to Italy yesterday to spend Christmas with his parents as he usually does, but for some reason this year it has left me feeling extremely lonely.  I love him and miss him as always, but this Christmas it is so much more than that.  My health has not been the best this year, with many relapses hampering my efforts to get my energy levels up and to keep my symptoms at bay, and more than just missing my boyfriend, I'm sure it is the isolation of ME/CFS that is causing me to feel so down.

I initially became ill in 2001, and by 2003 I was so ill I had to leave work.  For the next 7yrs I was mostly housebound and even bedbound at times.  But after working on getting a set routine, balancing effort with rest, finding some meds that helped with symptoms and a diet that also helped, I started to get better.  I met my lovely Italian, moved in with him, got a job, but over did it and relapsed in a bad way.  

Sunday, 23 December 2012

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

If you or someone you know, suffer from ME, another chronic illness or even just love a fantastical and funny yarn, than this book 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.

Saturday, 22 December 2012

ME/CFS book review: ‘Verity Red’s Diary: A Story of Surviving M.E.’ by Maria Mann

'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.

Friday, 21 December 2012

'Voices from the Shadows' - A Powerful Story of Courage in the Face of Tremendous Neglect and Abuse

“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.

Thursday, 20 December 2012

What’s in a name? ME vs CFS

And so with all things: names were vital and important.” - Algernon H Blackwood

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 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.

Wednesday, 19 December 2012

Why Am I Writing About ME/CFS?

“A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy.”
Lauren Bacall

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!).