Severe ME day 2017; Case study; Hay Green 

Hay Green, author of “101 tips for coping with ME” and also runs the Facebook page named after it, kindly allowed me to interview her for Severe ME day. She has recently deteriorated to being severely affected, having been mildly and then moderately affected since 2007.

Back then she was like any other woman in their early 20s with a zest for life, plenty of friends and a career she loved. She would go to the gym after work, them home to cook. She was looking forward to everything a 20 year old expects in life – developing her career, marriage, children. However in 2011 at the age of 23, after a bout of tonsillitis, she was diagnosed with ME. She’d been suffering from it, mildly and unknowingly, since 2007. Life was never the same again 

She is now 18-20 hours a day bedbound. She manages to leave her house only about once a month. Usually for medical appointments which she says are a lifeline. She is fortunate in having a very sympathetic and understanding GP which is the most helpful thing for her. Unfortunately there is little apart from symptomatic relief her GP can offer her though as we don’t currently know the cause or have cures for ME. On other occasions, if she hasn’t a medical appointment, she might leave the house to do something fun like a short visit to a garden centre or to feed the ducks 

Her symptoms are; 

  • Severe Muscle, joint and bone pain 
  • Vertigo / nausea 
  • Orthostatic intolerance 
  • Tremor of limbs and hands 
  • Post-exertional malaise 
  • Severe Fatigue 
  • Reverse Sleep disorder 
  • Muscle weakness and fatigue 
  • Parasthesia (Parasthesia is numbness and tingling in the hands and feet)

She is on morphine for pain and uses a commode as she suffers from bladder issues 

Despite all this Hay remains upbeat. To occupy herself whilst in bed she reads, writes, meditates, manages her facebook page “101 tips for coping with M.E” which has over 1.5k followers and keeps five cats; 3 adults and two kittens. Like many women with ME she has been forced to accept she will never have children so her cats are her closest thing to them. She says they’re much more independent than children. Her female cat Mia is particularly intuitive and will come to lie at Hay’s feet for hours when she is crashing. When Hay’s been very bad she has even according to Hay “sat on my pillow and put her paw on my head as if to say ‘there there, its going to be okay!”

In 2013 she began writing her debut book “101 tips for coping with ME“. She says she’s always loved writing and was inspired to write her first book when she realised there was a gap in the market for a simple, easy to understand, non medical jargon orientated book about how to live with ME. She has since written several others to continue to raise awareness, all with differing percentages of the proceeds from each book going towards Invest in ME Research, as well as setting up and running the Facebook page named after her first book. She now has an amazon author page, Hayley Green. She’s also a member of the Let’s do it for ME planning group. She confesses she can only do very little at a time though and has to pace very carefully indeed. Even visiting Facebook can exhaust her.

When I asked what her dreams/aspirations for the future were she replied;

“I dream of being able to move freely again without pain, to work full time hours, to be able to leave the house at the drop of a hat. To be able to dress, cook, eat and bath all in one day. I would love to set up a charity to provide tailored support to M.E sufferers. To pick up where I left off at 23 when I became so ill.”

Her new book “A piece of ME” is out now in paperback. It is an anthology of poetry written by ME sufferers. Priced at £3.75 with all proceeds going towards Invest in ME Research. Buy now!

Visit “101 tips for coping with ME” on Facebook 

Rebecca Ayling is on the hunt for a cure for ME…

“I was diagnosed with M.E when I was 13 years old. I had symptoms for a few years before this, but it took me those few years to be diagnosed because there is no criteria to be diagnosed with M.E. During this time, I felt like I wasn’t living, I was just existing. I was in my bedroom sensitive to light, noise and smells so I was unable to be around anyone else, unable to watch TV, unable to use a mobile phone, pretty much unable to do anything. I lost a lot of weight because I couldn’t eat because I always felt sick. I slept nearly 20 hours everyday. I had to leave school as my school didn’t believe I was ill and began court proceedings with my parents for my attendance. Luckily, the judge saw my medical records and instantly proved that I was ill and it was not mine nor my parents fault that my attendance was poor. This stress only made my illness worse so I left school. Thankfully, the removal of this stress helped me to improve enough to be able to do my GCSE’s at home. My parents had to fund these online courses, each costing £295. The LA refused to help fund any of my education from home. I was very grateful to manage to get 6 GCSE’s, 4 of these being grades A*-C. I have also managed to go to sixth form and do my A levels. I am on a part-time timetable and I have taken my A levels over a 3 year period. That’s my story. 

However, it’s important to note that I am only a moderate sufferer of M.E. There are people who suffer severely from M.E who are permanently bed bound. Recently, I had a 2 week period of being mostly bed bound and I couldn’t leave the house. This gave me a taste of what it really is like to have severe M.E. It made me realise just how cruel and heartless this illness is. It has no mercy. This is why I wanted to share my story and try and raise money for Invest in M.E who are currently carrying out research into the causes and possible treatment options for those M.E sufferers. 

Any donations, even £1 would mean the world to us.” Rebecca Ayling

Visit Rebecca’s justgiving page