Stepping Stones - Issue 34

AYMEGraduates@hotmail.com www.z8.invisionfree.com/AYME_Graduates

In this months issue: Mary Courtney’s exhibition, ‘A Story of Energy’ expresses her journey with M.E./ CFS through award- winning poetry and artwork

AYME interview famous rugby star!

Yoga Nidra and its benefits to M.E./ CFS Ben Foden

MEAW AWARENESS WEEK SEE WHAT FELLOW AYME’S GOT UP TO plus JULIET CHENERY-ROBSON’S PHOTOGRAPHY EXHIBITIONS ON M.E./CFS

...........plus regular piece ‘On the Pulse’ by Dani, SAMs page, introduction of new volunteers and their profiles

Issue 34

2011

New Activities and MeetUps on the Messageboard!!!

JUNE!!!!!!!!!!

-HOORAY FOR THE SUMMER BREEZE (HOPEFULLY)!!

Thought I’d provide you with a photo illustrating the way my niece likes to celebrate the Summer (to right), chillaxing in the old deckchair, she’s only two she’s needs to get moving around lol! I hope your all looking forward to the pleasures of Summer, whether you enjoy as much BBQ food as you can handle, magnum double-choc ice-creams (just a one-off treat eek), whippys with a flake or just the lovely smells of Summer I hope it aids your health or warms your bones up in some way. We’ve had a great May though and in one of the bigger articles this time AYME show us what events and activities members got up to over ME Awareness Month. We’ve also provided online activities that took place you’ll be able to watch on youtube.

If any of you want to send any photos or details of any events you did please do so, our details as always are on the inner backpage.

We’re sorry to say goodbye to one of our first regular male writers to Stepping Stones, Paul Church, who wrote the column, ‘One for the Boys’ updating us all on the latest in sport, music and film and he will be greatly missed. However we wish him all the best for the future and the best in health. We do have a new volunteer to introduce to everyone this issue called Leshia Shevchuk, some of you may know her from being members of AYME. She is taking on the position of Member/Volunteer Support and Wellbeing Co-ordinator. She is introduced on page 3 so have a look and details to contact her are with the rest of the grads team CONTENTS PAGE contact details on the innerbackpage. For everyone who of course remembers our previous editor Diane, there’s an Leshia introduction/Diane update 3 update she asked us to provide also on page 3 together with On The Pulse with Dani 4 a website and blog she has set up for us to follow or have a Ben Foden rugby star interview 5 look at.

Mary Courtney ‘The Story of Energy’ 6 Tori and Tracy have provided us with a page dedicated to Mary Courtney 7 updating everyone on the present SAMs services and how Mary Courtney 8 everything is going, with details of who to contact for which Jenna Profile 9 service this issue.One of the most recent new aspects to Leshia Profile 10 Grads is the start of some new activities and meetups on the Virtual Library 11 messageboard, shown on pages 12-13. This is so we can New activities/meetups on messageboard 12 hopefully get people meeting up at the same time and hopefully New activities/meetups/fantasy football 13 find things in common. As seen in the article covering SAMs Page 14 this we would love some more stories, photos or even moving Member Services 15 into modern age a short audio, video even (although we MEAW - members events, photos 16 appreciate for some this is a lot to ask) about themselves, their MEAW - members events, photos 17 journey with M.E./CFS. You could also cover anything that’s Yoga Nidra 18 helped you or ways you have made your life better in any way Grads Team Roles/Emails 19 , etc. I don’t know about you but during M.E. Awareness AYME News 20 Week I was so impressed and overwhelmed by the amount All articles and advice contained within this magaof people putting videos of themselves in the newsfeed on zine are the personal experiences and advice from facebook and on youtube bravely talking about their condition members ONLY. Neither AYME or AYME Graduand helping raise awareness immensely. So if anyone feels they ates bear any responsibility for articles and advice are up to doing this or have already made one we could put on that may appear. please contact Charlotte, the Messageboard Co-ordinator, her details are on the innerbackpage and she will upload it for AYME does not recommend or endorse any specific you. Even a written word document for people to read about treatment, therapy or practitioner or service and you are strongly advised to make your own enquiryourself or short audio message helps us all feel more ies before taking any action. If you have any quesconnected with each other and will encourage interaction on the tions about individual health matters please speak messageboard. to your doctor or other healthcare provider.

Takecare, Rachel, Stacey & the Grads Team x Stepping stones picture by Naomi Ibuki, link: http://www.flickr.com/photos/777/304238798/

INTRODUCING OUR NEWEST VOLUNTEER & HER ROLE::::: LESHIA SHEVCHUK Member/ Volunteer Support and Wellbeing Co-ordinator Her role includes: 1. Point of contact for members and volunteers who need any form of advice and referral to a support worker, helpline or local support group in their area (local support groups are in the process of organising at the moment so not available right away).

2. Emails Grads team with any news and to see how everyone is and if they have any difficulties.

3. Distributes ‘Feedback Forms’ to Grads team each year to allow volunteers to comment on their experience of volunteering that year.

Her details are now on Stepping Stones inner back page under Grads Team Roles if you need to contact her.

Update on Diane our past Editor and new exciting things in her life!!!!!!!!

For those of you who of course remember our last editor Diane Shortland, she’s asked me to pass on some information on how she’s doing and where her life is right now! She is currently undertaking an MA in Journalism in which she has to create a blog and websites to increase her writing experience, you may want to follow some of them and her journey which she dictates on them throughout: www.dianeshortland.co.uk www.dianeshortlandliveforleisure.com www.dianeshortlandlaughtertherapy.com

On The Pulse.......with

Danielle Lee

Hair Washing Made Easy There’s nothing better than clean, freshly-washed hair. It’s one of life’s simple pleasures and makes you feel so much better. But what do you do when you can’t leave your bed or manage a shower? Well, an inflatable Shampoo Basin may be the thing for you. Easily inflated by mouth or pump by your carer, this basin is placed under your head while you’re in bed and filled with water so you can lie back and gently have your hair washed and rinsed. It comes with a plug to easily drain the water in the sink once you’ve done. They come in a variety of styles and I found one at rdkmobility.co.uk for £15.54 that comes with free delivery.

Wreck This!

I journal. It’s a great way of reflecting and coping with the everyday stresses and strains which a life with ME throws at you. Sometimes I get tired of going blah, blah, blah and I want somewhere new to channel all that, albeit exhausted, frustration! That’s where Wreck This Journal might come in. This is not your average journal. A normal journal sits neat and clean on your desk. Boring!

Wreck This Journal actually invites you to rip, stain, scratch, drag, bend, drop, kick, stick, lick (if you so desire) and basically do all sorts of weird and wonderful things to it. All in the name of wrecking! Great for people who want a creative outlet and, maybe, don’t have the energy to write in a normal journal but still want a way to express their frustrations and be creative at the same time. Wreck This Journal can be bought from Amazon for £5.21. So, what’s stopping you? Release that inner vandal the one way you can and get wrecking!

Magic Massage Pain Relief A lot of us have to cope with pain on a daily bases, often having to turn to painkillers to reduce the intense, sharp, throbbing muscle pains that flood our bodies. I suffer with a lot of pain, especially in my arms and legs. So, what can you do if you don’t want to become reliant on painkillers or want to reduce the amount you take? I found massage bars can be a real help and Lush sell a wide range of natural massage bars. My fave being Hottie (£4.95 for 90g), a bar for seriously aching muscles. It is moulded with bumps to improve circulation with an intoxicating mix of vanilla, black pepper and ginger to stimulate blood flow and warm your skin.

Or why not try Wicci Magic Muscles (£5.70 for 70g)? Sprinkled with aduki beans for a deeper massage, this spicy bar leaves skin soft and gently warmed. Warm each bar gently between your palms, or get someone else to do this if you’re unable, then rub them slowly and repeatedly over the desired area. Or if you’re feeling more gentle, try Strawberry Feels Forever (£5.35 for 75g) to leave you feeling massaged and smelling of strawberries and cream.

Visit Lush.co.uk for a wide variety of massage bars to suit every taste.

Lick It! Once you’ve wrecked it, why not lick it…..an ice lolly that is?! The hot, Spring weather of late demands the need to cool off and an ice lolly is just the ticket. But they’re often packed with sugar, making them a not -so -healthy treat. Well, Del Monte’s 100% Juice ice lollies are just that. 100% pure fruit juice - no added sugar, no additives. They even count towards one of your five a day! Making them the perfect summer treat and the perfect healthy treat. They come in two flavours: orange and pineapple. A box of 3 costs £2.39 at Tesco, although at time of writing they’re on offer at only a pound a box! So, get licking, cool off and feel smug because you know it’s only fruit.

If anyone knows of any ME friendly products or ideas that could help your fellow Grad then please feel free to contact me at danil25@btinternet.com.

Bring on the summer!

Ben Foden AYME Q&A..

Rugby Union player for Northampton Saints and England

When did you start playing rugby?

When I was four years old, my dad took me to his local rugby club – Crewe & Nantwich, where he was playing at the time and I got stuck in with the Under 8s. There was no tag or touch, it was all full on! I was thrown in at the deep end.

What is your biggest achievement to date?

Hopefully it’s still to come... but I’d have to say winning the Premiership with Sale Sharks in 2006.

That was pretty special.

What are your rugby career aims?

Obviously to play as many games as I possibly can for England. I want to win as many competitions as I can too – the Aviva Premiership and the Heineken Cup with Northampton, the RBS 6 Nations championship with England and then ultimately the Rugby World Cup, if that’s not too much to ask!

I’d also love to play for the Lions one day.

Before a match, is there anything you do for good luck?

When I’m at Northampton I normally do the ‘spot the difference’ in the match day programme but there isn’t one in the England one! There’s nothing major to be honest – I strap my wrists after I’ve put my kit on and then I write a couple of little notes to myself.

Do your teammates have a nickname for you?

I’ve got a few to be honest! Pop Idol, Pops, Stinks, Fodes and Vinny! Pop Idol because I fancy myself as a bit of a singer, Stinks is down to Chris Ashton – no idea why, Fodes is self explanatory and Vinny is after the character Vinny Chase from Entourage.

What is your best rugby memory so far?

Probably when I was playing for England Sevens and we won the Hong Kong leg of the tour back in 2006. Ben Gollings scored a try with the very last play of the game to win it, it was pretty euphoric and the crowd went absolutely mental.

There was an enormous sense of relief, I thought we deserved to win it, it looked like we weren’t going to win it and then we won it – amazing!

What is the biggest adversity you’ve had to overcome?

In rugby I’d have to say recovering from a serious shoulder injury in 2007. I had to have an operation which was pretty serious, I tore a couple of muscles quite badly and when I came back from the operation they gave 10 weeks of rehab time but after four weeks I could still barely move it, so they got me back in and cleared it up and I was on the road to recovery. I remember going in for my first hit on the shoulder after the op and worrying whether or not it would withstand it.

Once I was back into the thick of if, it all came back to me quite naturally. But overcoming a big injury certainly tested my character and I was pleased to come out the other end!

Mary Courtney’s journey with M.E./ CFS and how art & poetry became her expressive and therapeutic outlet.

Biography of Mary Courtney (by Pam Drower)

www.marycourtneypoetry.co.uk

Born in Coventry to Irish parents, Mary is the eldest of six children.

During her childhood, she developed a wide range of interests, but had a particular love of English and painting. When it came to university, however, Mary chose to study the more practical subject of nursing. On graduating, she worked in London as a nurse, returning to Coventry to work and support her family in caring for her father.

Mary’s career then took a turn towards teaching, managing ‘Access’ courses at a local college and latterly teaching Medical Sociology at Northampton University.

Outside work, she enjoyed a full and active social life - dancing, cycling, walking and swimming. This was brought to an abrupt end however, over three years ago, when she was diagnosed with Chronic Fatigue Syndrome (ME). Largely confined to her house, Mary discovered that although her physical energy had deserted her, the poetry returned. During this period, she was delighted to receive recognition for her poems in the form of awards in the National Poetry Competition, as well as national and international competitions organised by Cambridge University and the University of Warwick.

As time went on Mary began to illustrate her poems as she rediscovered her love of painting - and from there the idea of putting both poetry and pictures together in an exhibition has brought her to where she is today.

Mary’s attention was diverted from the Arts as a teenager, but re-emerged to enliven her life decades later - when most needed.

Her exhibition: A Story of Energy - by Mary Courtney ‘A Story of Energy’ charts the various energies of life, from the smallness of weariness to the expansion of joy, using a combination of paintings and poems. It is a story of increasing energy through creating. A story of a long haul journey of living with and finding a way through that little understood and much misunderstood illness, M.E. the chronic fatigue. Seven picture-poems, the flavours of life, emanate from the central hub, the riddle, that is energy. Everything flows from this.

The story of a story of energy Seven is the number of days in creation, the number of chakras in the Hindu energy system, the number of characteristics of living things, the number of mystery, the number of paintings I felt I could put together as a story on a limited budget, on a limited store of energy. So seven became the congregation. And I added one, as the hub, the central figure, the cell as a world - as the riddle of Energy.

Later, I added haikus (three line miniature poems) with the Japanese rigour of 5-7-5 syllables, to accompany each painting. I figured this was an appropriately confining form, like being stuck in a house, or a corset. It was a small space where something could be made, created. Creation

being, to me, the essential aspect of energy. But creation can get beyond itself - and break out of the space it is in.

And this is what happened with one of the haikus. And this is what happened as I developed more energy - the sizes of the paintings increased. They moved from the small of lying down, to standing up - the portrait format. From the foetal position under the duvet, to over-the-top polar bear size, out from the winters of hibernation, relishing the feel of a good stretch.

Stories behind the pictures Dragging Is a small picture, representing the lowest ebb, the feeling of being most diminished, the weariness of weariness; where the coloured petals of energy are distant, unwitnessed in the mire of tired. Spirals of snails or eyes in stages of shutting inhabit the skies. Legs are the heavy sledge being dragged through the sludge, the grey of fogginess. Painted when there wasn’t energy enough to get dressed. Just enough to hold a paintbrush.

Dragging With head down can’t see The coloured petals ahead.

Dragging lifeboat legs.

‘Dragging’ Dragon Is the bogeyman, the wicked witch, the stealer of energy, hoarding the bounty in his cave, his den in the hill.

Lashing his tail, chasing, demanding more. What can you do? Run in that dream of running, to find the trap, not a door in the corner. You’re cornered, sweating light bulbs, a mandragora, ripped from your rightful place; spirit of a mermaid, flailing. When I painted this picture, I had all the will in the world, but my body refused.

Dragon Spirit tries to lift, The dragon curled in the cave Insists on staying.

‘Dragon’

Cake So garish, it could be mistaken for the carpet slippers of Zandra Rhodes, or a sickly bed, surrounded by the pitch of darkness, purple-blackness. Two orange flares of disagreement, trail bewilderment: the virus warring; ideas, people, neurones, in conflict. Awake in the night in “slumbering agitation”, this is far from the “Land of a Piece of Cake”. This is “Flaked”. Painted after finding there really is a place called the “Land of Nod”. It is east of Eden: east of the garden of earthly delights..

Cake I woke, no I fell, To find myself in ‘Flaked’, Far from the ‘Land of a Piece of Cake’.

‘Cake’

Energy Of the world, ourselves, our body as the cell, miniature world and universe entire. Held within, stuck in the muddle of waiting, is the riddle. Can energy be unstuck? Around the stillness of the cell, the membrane of the world moving. Like a mandala for meditation, the question desires an answer, to be balanced. This idea came from a doodle in the bed on a very low energy day, when I “saw” Einstein’s formula for energy: e=mc2 , as a riddle, hidden within the contents of a cell.

Energy Cell. The container.

Energy - The flavour of Life - moving to balance

‘Energy’

Apple Is more than a fruit. It’s that old symbol of knowledge, the forbidden, temptation. The apple, our world, turns, as must knowledge. Tempt us, with fantastical factuals, like we can all fit within one apple, all the people of all the world in one apple, if all the spaces between our atoms are removed. I borrowed from the incredible medieval too, the lore of the sciapod: creature with a foot so large it can be used as a sunshade. This, my first big picture, loving the space. Imagining a big foot protecting the apple full of earthlings.

Apple To bite the apple, Taste the truth of the world’s womb, To find it has turned.

‘Apple’ Mary’s exhibition is currently at George Eliot Hospital, Chronic Fatigue Clinic, Nuneaton, throughout the Summer. You can see more of her work and journey on her website: www.marycourtneypoetry.co.uk.

The exhibition was launched at Friswells Gallery in Coventry and after George Eliot Hospital will go to The Medical School at Warwick University.

Mary also sent us some audios she made while producing the work which Charlotte will be uploading to the messageboard.

PROFILES NAME:Jenna Rogers LOCATION: Essex AGE: 27 ACTIVITY %: 70%ish 1. Whats your most exciting pair of socks? My Betty Boop toe socks, I’m not quite used to my toes individually being covered yet but they’re pretty cool.

2. Who has or does inspire you the most and why?My mum. Its hard to say why without writing a huge essay! She was my best friend and helped and taught me so much. She had a tough life but always managed to smile and carry on with it. I hope I end up being an awesome mum/person like she was!

3. Favorite joke? I only know/remember one joke and its way too rude to put here!

4. What do you now know that you wish you knew when you first got ill? That ME isn’t something ive made up in my head and expensive treatments don’t work.

5. What is your porn star name (name of your 1st pet followed by mother’s maiden name)? Hugo Joseph which um,might be a bit misleading ;) 6. Who was your 80s pin-up heartthrob? Not sure I was interested in boys back then but I was obsessed with Kylie and Jason and Roland Rat! 7. What’s the best bit of advice you have ever been given? Not to worry what other people think

its swimming costume.Mum grabbed me in horror…it was a real woman! (still not sure why she was shopping in that though and why she didn’t stop me!)

9. What pet shares your bed? My gorgeous cats, Amber and Leeloo 10. What’s your greatest ME-related achievement so far? Either passing my GCSE’s despite missing a lot of school, completing a training course for one of my volunteer jobs or living away from my parents for a few years.

11. What creative hobbies have you pursued since being ill? Honestly? None really, im not very creative! Id love to make jewellery but haven’t got round to starting that yet 12. What simple thing can brighten up your day and put a smile on your face? My cats and sitting in an empty field on a warm day. Also thinking about hot famous men hehe 13. Describe yourself in three words: Shy, random, kind 14. What one thing would make your life better? My mum….or a live in chef because im no good at cooking healthy meals for myself 15. Dream date?

I like simple things. A picnic on a quiet beach/field/ park, etc with a guy who understands ME and anxiety and treats me well 16. If you could give your illness a piece of your mind, what one sentence would you say?

Im not good with words, I’d prefer the illness to transform into something I could beat the crap out of.

17. What’s the most touching thing anyone’s done for you? I have a few lovely friends who sent me care packages after mum died which I wasn’t expecting.

18. If you could travel anywhere just by clicking your fingers where would you go and why? If all I had to do was click my fingers id go everywhere. I’m greedy, I need to see everything the world has to offer

8. What is the most embarrassing moment in your life so far?I was 10, in a shopping mall in Florida. I walked over to a mannequin and started unzipping the zip on the front of

19. How would you like to be remembered?

That’s tricky, maybe as someone who was kind and thoughtful and had great taste in music and tv ;-)

PROFILES

9. What pet shares your bed?

NAME: Leshia

I have 2 cats and they seem to take it in turns as they don’t like being near each other. Lately it’s been Mishko taking up more of the bed than me!

Shevchuk LOCATION: Leeds AGE: 25 ACTIVITY %: 25-30% - ish

1. What’s your most exciting pair of socks?

Alas, I have no exciting socks, but I adore my thermal spotted socks for my ice cold feet!

2. Who has or does inspire you the most and why?

My mum. She’s always been there for me through out my illness and she’s such a strong woman, I’m lucky to have someone like that to look up to :) 3.Favourite joke?

I have no favourites in all honesty. But I was slightly amused when I found this one -

10. What’s your greatest ME-related achievement so far?

Getting my jobs within AYME, I only wished I’d started volunteering sooner as it gave me something productive to do.

11.What creative hobbies have you pursued since being ill?

Probably my poetry, I don’t write anymore, but I have a large folder full of poetry I wrote throughout my years of being ill.

12. What simple thing can brighten up your day and put a smile on your face?

A simple text from friend, random post and as soppy as it is, a hug from my mum.

13. Describe yourself in three words:

Q. Why don’t skeletons fight each other?

A. They don’t have the guts.

4. What do you now know that you wish you knew when you first got ill?

Stubborn, loyal, reliable.

14. What one thing would make your life better?

Easy-peasy – health.

Not to push myself further than I can manage, and to fight back when medical people try to push me. 15. Dream date?

5. What is your porn star name (name of your 1st pet followed by mother’s maiden name)?

Starra Shevchuk 6. Who was your 80s pin-up heartthrob?

Ooh, it’d have to be Jensen Ackles from Supernatural!

16. If you could give your illness a piece of your mind, what one sentence would you say?

Bugger off now, you’ve taken enough years from me already!

I was only born in 85, but my first heartthrob was probably Mark Owen from Take That!

17. What’s the most touching thing anyone’s done for you?

7. What’s the best bit of advice you have ever Honestly, it’s the little things that friends have been given? done and the support they’ve given. And being asked to be Godmother to my nephew.

That sometimes, it’s okay to be selfish and try to put yourself first.

18. If you could travel anywhere just by clicking your fingers where would you go 8. What is the most embarrassing moment in your and why? life so far?

I’ve always wanted to visit Ukraine, as my mum’s parents came from there.

Just silly things that I remember doing when I was younger and all I can think of now is ‘why did I let 19. How would you like to be remembered? myself do that?!’

As someone who loved with all their heart, made someone smile, and gave fantastic hugs!

Virtual Library with Lesley Dawson.

Hi everyone, I’m Lesley Dawson, and I run the Virtual Library Scheme.

The Library continues to grow and we now have more variety of items available as you would find in a real Library.

We now have – 28 books, 9 audio books on Cassette, 47 audio CDs, 6 videos, 16 DVD’s, 9 console games totalling 115 items.

Thank you to everyone who has contacted me to donate items to the scheme since the last magazine. It would be great if more members make use of the library this year. The virtual library is also very SAM friendly.

For more information of what is in the library, please contact me for a copy of the Virtual Library Master List. This list can be sent to you by e-mail or snail mail (this will include a request form which will need to be completed and returned to me).

The Virtual Library Master List that is currently on the AYME Graduate Message Board is quite outdated but I hope to get .this updated in the near future. The Library Request & Donation forms are still available on the AYME Graduate Message Board.

To solve problems of mass storage for one person,the donated items are kept by their owners.

If you have any items such as books, audio books,

CDs, DVD’s, Video, computer games or magazines which you wish to donate please let me know and I will send you a form to complete and add them to the Master List. If you were able to let me have a review or short synopsis of these items this would be great as I could then include this in the Master List which will be distributed.

When requests are received by me I send this on to the owner who will be asked to send the item(s) by post direct to the person making the request. The owner will be responsible for paying the postage to send the item out but the person who is borrowing the item will pay the return postage.

From personal experience I have had no problem sending audio books by standard post (unless you prefer to use recorded delivery). I pack them well in a jiffy bag and make sure I put my address on the back of the jiffy bag so it will be returned if there are any problems.

In order to keep track of where items are I will email owners to find out if goods have been returned approximately every 3 months. If not then it will be my job to follow-up the person to whom the goods have been sent to find out if they need to keep them for a longer period.

Books of all genres will still be greatly appreciated; though we do have 28 books from a variety of genres now in the library. Types of books that have been requested are contemporary easy reading ,autobiographies of popular media , sports people and comedian shows.

If you have any items to donate could you please let me know the title and what the item is you wish to donate by letter or e-mail with your full contact details to:

Lesley Dawson, 2 Arnos Grove, Nuthall, Nottingham, NG16 1QA l_dawson24@hotmail.com

New Activities and MeetUps on Messageboard yall !!!!!!!!!

Hi everyone!! Just want to inform you of a few new activities taking place on the messageboard. There are two main ones that will be taking place on the board regularly from now on hoping to encourage people to meetup and discuss common ground/interest REGULAR TOPIC POSTING 1. Every 1st week of each month there will be new topics posted for people to discuss/comment on the board. A grads member has kindly offered to take this on however if anyone has any ideas for topics Charlotte would love to hear about it contact her at chapsmills@gmail.com. ALSO PLEASE DON’T FEEL THIS MEANS NO-ONE ELSE CAN POST TOPICS, THE MORE THE MERRIER. REGULAR ARRANGED MEETUPS ONLINE 2. Twice every month there will be allocated times (varied to help catch everyone) for meetups where people can agree to go online and hopefully have more chance of catching each other when they post a topic or want to message someone. These will be announced on the messageboard from July onwards.

MEDICAL NEWS VOLUNTEER WANTED FOR BOARD!!!!!!!!!

Charlotte is also looking for anyone who would like to help out on the messageboard with a ‘medical news’ section, if you’re interested please contact her at chapsmills@gmail.com.

Charlotte

Also if anyone else would like to help Charlotte out with the messageboard generally or has any ideas for the messageboard again please contact her at chapsmills@gmail.com.

Requests for member’s ‘M.E. journeys/testimonials’ to be put on the messageboard, or any photographs of yourself, family or personal achievements. It could be an audio of this, video message or written document it’s completely up to you but I think it would help us all to connect to people going through similar situations. Contact Charlotte, Messageboard Co-ordinator if you feel you want to do this at: chapsmills@gmail.com.

Hi everyone, Sadly it’s the end of the football season now so the competition has closed for this year, but don’t worry it will be running again next season.

Congratulations to everyone who won a prize throughout the season, and commiserations to everyone (like me) who didn’t.

You all helped to raise £137.50 for AYME this year, which was great.

If you would like to enter the competition next season or would like more information about how the competition works before you enter please feel free to email me football@ayme.org.uk and I’ll do my best to answer your questions and help you out.

Once again a reminder that the competition is open to everyone, not just AYME or AYME Grads members so make sure that you get all your friends and family to enter too, the more that enter the more money we can raise for AYME. Hope you all enjoy the summer; see you all in late July/early August Take care Chris (AYME Fantasy Football Co-ordinator)

Overall May Table Position Manager Name 1 Joseph Witcombe 2 Chloe Sargant 3 Ryan Baker 4 Jackie Bird 5 Luke Guest 6 Harry Gibbs 7 Claire Pennells 8 Susan Edwards 9 Tori Dinnen 10 Jeremy Theobald

Team Name

Points

Crouch’s Robot’s 1373 Arsenals’ Invisible Trophies 1358 Messi Madness 1314 Beguinness FC 1292 Barry Conlon FC 1270 Team Panfer 1267 Muddy Feet United 1219 Torres’ Tornados 1208 Dinnen’s Dynamos 1182 The Bare Bones 1176

May Team Name Points Position Manager Name Ellie’s Elephants 110 1 Ella Addison Barry Conlon FC 108 =2 Luke Guest Torres’ Tornados 108 =2 Susan Edwards Delirious FC 107 4 Sarah Unthank Beguinness FC 102 5 Jackie Bird Going For Goals 99 6 Chris Theobald Da Wooga United 98 7 Kyle Martin Luke’s Lavishing Lads 96 8 Luke Jewell Team Panfer 93 =9 Harry Gibbs =9 Mike Theobald Nigel Quashie’s Sweet Left Foot 93

SAMS PAGE UPDATE!!!!!!!

Hi Everyone, Just a reminder if you are 30% and under, or care for someone who is under 30%, you can go on the SAMs list. This is basically a way of making sure you get a bit more support while you are going through such a hard time.

As a member of the SAMs you can get a buddy who will write to you on a regular basis without expecting a reply, and are also eligible for the text mates scheme which is similar but means you will receive texts instead of letters. As a member you will also automatically receive Birthday, Christmas and Easter Cards as well as letters from me throughout the year.

If you are 30% or under and would like to be put on the SAM’s list then please email me : toridinnen@live.co.uk or write to : Tori Dinnen 14 Millmount Lane Dundonald Belfast BT16 1WN Any new members to Grads who is listed as being under 30% will automatically get a letter from me asking if you would like to be put on the list.

Last issue we launched our new Text Mates Service. It’s basically the same as the buddy scheme but with texts rather than letters. Anyone who would like a text mate please contact Tracy Holland Email: tracy.holland79@gmail.com or write to: Tracy Holland 3 Beaufort Drive Chilwell Beeston Notts NG9 4FJ. Please also feel free to contact Tracy if you would like a buddy who can write to you without expecting a reply or if you yourself would like to write to a SAM. Some of our SAMs have been waiting over a year for a regular buddy so I know it would be much appreciated if anyone would like to volunteer. A big thank you and welcome to Katie Brown who has recently volunteered as a new buddy.

I made some very close friends through the buddy system when I was in AYME, all of whom have stayed friends so I would definitely recommend it! In fact it was one of my buddies, Cara who introduced my husband Tom and I! Hope you are all managing ok with our mini heatwave (I feel odd saying that, it is pouring outside while I type!) I know it can be frustrating if you can’t get outside during the better weather but I hope you can enjoy a little bit of the spring.

Love Tori and Tracy x

AYME GRADUATE SERVICES Contact List

SAMs Database (Severely Affected Members)

Hi everyone, Lesley Dawson here and I run the Contact List.

The Contact List is a way for you to get in touch with each other and make new friends. Your details go on a list that is sent to everyone taking part, leaving you to contact whoever you want. Contact can be via letter,email, instant messaging (MSN, Yahoo, etc), phonecall or text message – whatever’s best for you.

If you want to take part, please send me the following to go on the list: contact details (address, email, instant messaging details, phone number and/or mobile number) and a short line about yourself/your interests. Please make it clear which contact details are to go on the list and which are just for my own use sending the list out, etc.

Please note that in contacting me to have your details added to the Contact List, you’re giving us permission to pass on your details to other members also on the list. Write to me at:

Lesley Dawson, 2 Arnos Grove,Nuthall, Nottingham, NG16 1QA or email:l_dawson24@hotmail.com

New Members We have 5 new members to introduce to you since the last magazine, bringing us to a total of 55 members now. Here’s the newbies:

Sarah Garlick Lucy Norris Laura Oates Claire Pennells Sam Steel It’s always great to have people join us and if you know of anyone 24 or over who could benefit from being a part of the Graduates, please ask them to email Jenna at: AYMEGraduates@hotmail.com or Gareth Crittle, Membership Co-ordinator at: gareth.crittle@googlemail.com.If you want to send us your profile or a letter/notice to put in the Newsletter, the Editors addresses are found on the inner back page. Or why not try one of the various Schemes!

Hi, my name is Tori Dinnen and I am the new SAMs co-ordinator. We have various SAMs services.

SAMs will receive Birthday and Christmas cards and can join the Buddy Scheme and TextMates Scheme.

Anyone 30% or below is automatically added to our SAMs database. A Buddy is someone who will write frequent, cheery letters to a SAM without expecting a reply. If you’re a SAM who would like a buddy, or you would like to volunteer to buddy a SAM, then please contact me:

Tori Dinnen: toridinnen@live.co.uk 14 Millmount Lane, text: 07976 112513 Dundonald, Belfast, BT16 1WN

The Crissie Benito Notebook Scheme Hi, I’m Tracy and I look after the Notebook Scheme for the group.Members of the Notebook Scheme are divided into circuits and a notebook is passed around each circuit. Each member reads the other members’ contributions and adds their own entry, and in this way a conversation builds. The Scheme is very SAMfriendly,as you don’t have to add your own contribution if you’re not up to it - you can just enjoy seeing or being read the other entries, or can get someone to write something on your behalf.

There are currently two circuits looked after by Lesley Dawson and myself. If you’d like to join us, please send me your name, address and email if you have one. Your address will appear in the front of the notebook, so that members of the Scheme know where to send it. If you’d rather other members were not able to see your contact details we can work around that, so just let me know.Write to me at:

Tracy Holland, 3 Beaufort Drive, Chilwell,Beeston, Notts NG9 4FJ or email: tracy.holland79@gmail.com Take care everyone, Tracyxx

Various events people got up to over M.E./CFS/FM Awareness Week May 8-15th 2011 Online Events Facebook • many attended ‘Virtual M.E. Awareness Day’ 2011.

• Lots of videos were posted into facebook’s newsfeed with people explaining how their condition affects them and the struggles they face.

YouTube • AYME members Caroline Murphy and her boyfriend Sam Cann were interviewed on Kerrang Radio, here’s the link to hear it http://www.youtube.com/ watch?v=ugnx-Z-vyNg • Here’s a video related to AYME’s theme, ‘Hidden Lives’ for this years M.E. Awareness Week, ‘Life with M.E. in photos’, an 18th Birthday 2011 http://www.youtube.com/watch?v=UNINQD8h3hA MEAW AYME MEMBERS EVENTS: Ami and Georgie Barrass collected at Tesco’s in Pembroke Dock, Pembrokeshire on May 10th.

Jasmin Alexander, 10 and her friend Phoebe, 11 held a 24-hour sponsored silence on May 7.

Tanya Malone is putting collection boxes in shops and business in Wadebridge, Cornwall.

Ami Barrass got MEAW in the Head’s speech at the Sixth Former’s School Prom on Friday in Pembroke Dock.

Sam McInnes set up a Blog carnival for M.E awareness week at http://samandme.org/ Tracey Hall raised £600 for AYME in her brave skydive: Take a nosy at her pics:

The Music Experience for M.E, took place on Thursday May 12th, @ John Cleveland College, Hinckley. For more details go to http:// www.charliesme.co.uk Hollie Drever and friends collected in Inverness.

Raising funds & awareness for Myalgic Encephalopathy

Laura and Cathy Hannon of Kent held a coffee morning on May 14.

-&& %$&. 72 7+( Âś6 BOOST DANCE COMPANY WE THREE AND I ROSANNE HAMILTON CHARLOTTE MAWDSLEY TAYLA-BLUE MITCHELL-JARVIS MICHELLE NORTON

Stuart Taylor completed the Three Peaks on June 11.

Ian Tallamy is starting a 330 mile cycle from Aberystwyth to Norwich on June 27.

Jet Spero of Lancaster is planning a music and comedy night in the Summer.

Fran Foot wore PJ’s all week to raise awareness and funds. See http://www.justgiving.com/franfoot

Thursday 12 May 2011 7:30pm John Cleveland College Hinckley Adults: ÂŁ7.50 6WXGHQW &KLOGUHQ 2$3ÂśV ÂŁ5 Family Tickets: ÂŁ20 Enhanced tickets available

www.charliesme.co.uk charliesme

IN SUPPORT OF MEA & AYME

FOR TICKETS CALL 07907 317978 OR EMAIL:enquiries@charliesme.co.uk

Artist Juliet Chenery-Robson and exhibition, ‘ME An Invisible Illness’ for ME Awareness Week 2011 was at: Gemini Building in Whitehouse Way, Peterlee. She’s previously exhibited her work covering M.E./CFS/FM at Durham Art Gallery 2010: ‘A Diagnosis of Exclusion’ 2010 Durham Art Gallery DLI Museum and Gallery. She displayed a series of photographs exposing the lives of patients in the NorthEast of England with M.E./CFS. Her MA in Photography began through wanting to aid exposure for her daughter’s illness.

Also this year she is working with Life with Art and MENE exhibiting 2 strands of her work surrounding ME (‘A Diagnosis of Exclusion’ & ‘Unpredictable Patterns’) in empty office spaces around England. This is to help raise awareness and funds for charity. The tour kicked off last Friday (for ME Awareness Week) in Peterlee and then it will open in Cheadle, followed by approx 15 other venues.

To see more, take a look at her facebook page ‘A Diagnosis of Exclusion’ or you can read an article on her at: http://www.axisweb.org/ seCVPG.aspx?ARTISTID=14000. Also within next issue of Stepping Stones there will be a more detailed article on the work of Juliet Chenery Robson, her daughter and her next plight to help raise awareness of M.E./CFS involved within the the PhD she is currently undertaking.

YOGA NIDRA or ‘Yoga Sleep’ - it’s benefits to severe and moderate sufferers of M.E./CFS Satyananda Yoga teacher Rebecca Allen gives an overview of the practice of Yoga Nidra and its benefits for people with ME/CFS. Some of you will be familiar with Yoga Nidra, the deep relaxation technique developed by Swami Satyananda Saraswati, founder of the Bihar School of Yoga. Yoga Nidra (meaning yogic sleep) is one of the most powerful forms of deep relaxation available.To practise Yoga Nidra no effort is involved, we do not even have to "try to relax" (which can in itself be stressful!), we simply lie down, keep as still as possible and listen to the instructions.

Yoga Nidra can be done in a yoga class, led by a teacher trained in the technique, or practised at home listening to a good recording. It is one of the most effective and accessible yogic techniques to support our health and development throughout our lives, whether we are happy and creative, fit and well, unwell, bedridden (or severely disabled), or dealing with crisis.

Many of the beneficial effects of Yoga Nidra are particularly useful for people with ME/CFS. In the 1980s Scientists at the University Clinic in Cologne, Germany used EEG to monitor brain activity of individuals whilst practising various relaxation techniques. The results showed that Yoga Nidra deep relaxation was a more effective form of deep relaxation than the other suggestive or hypnotic based techniques (1). Yoga Nidra was seen to cause consistently positive changes in brain wave activity, and a balancing effect on the interaction of the two sides of the brain. These results were confirmed by Dr. Hans Lou and Dr. Troels Kjær, from the Kennedy Institute at The State University Hospital in Copenhagen. This later study used a PET scanner to take pictures of the brain during Yoga Nidra as well as monitoring by EEG (2).

It is generally accepted, that deep relaxation (as opposed to just putting your feet up) produces many beneficial physiological changes in the body. These include balancing the central nervous system, strengthening the immune system, normalising the blood pressure and more efficient respiration (3). In her book Beat Fatigue with Yoga, Fiona Agombar found that her dysfunctional central nervous system, measured by a "heart rate variable" monitor, was significantly helped by a period of deep relaxation and meditation (4).

As Yoga Nidra is such an effective form of relaxation, all the inherent benefits of deep relaxation can be extremely efficiently achieved through the regular practice of the Yoga Nidra technique.

For people living with fatigue, Yoga Nidra can immediately revitalise and energise the physical body, whilst at the same time calming and clarifying the mind. This is invaluable for people with ME/CFS who may be physically fatigued, whilst being simultaneously exhausted by overactive minds or befuddled by "brain fog"! One hour of Yoga Nidra is the equivalent to 4 hours of normal sleep (5). It can be practiced instead of sleep at times when we are suffering from insomnia. The regular practice of Yoga Nidra can relieve insomnia and sleep disturbances.

Further benefits include the reduction of pain levels by the release of physical, emotional and mental tensions. In addition the "pairs of opposites" stage of the practice helps tolerance of pain by working on the electric activity in the brain dealing with states of awareness such as pain. One of the results of the change in brainwaves during Yoga Nidra is a balancing effect on the different dimensions of the brain. This has the direct effect of improving coordination in the body.

A Systematic progression into profoundly deep relaxation There can be anything from a minimum of two to eleven stages in a Yoga Nidra session. These include preparation and settling, resolve (sankalpa), rotation of consciousness, body/floor awareness, breath practice, pairs of opposites, chidakasha awareness, image visualisation and or alternative visualisations, resolve again and externalisation. In this article there is only room to examine the "rotation of consciousness" stage in any detail. For a more in depth examination of the remaining stages of a Yoga Nidra there would need to be a part two to this article! Here’s just how one of these processes works (put simply): Rotation of Consciousness The fundamental element of a Yoga Nidra is the rotation or the awareness around parts of the body in a particular order and with specific emphasis on particular parts. This element of the practice stems from Nyasa, the ancient tantric practice of mentally placing complicated mantras on specific parts of the body. Swami Satyananda simplified this practice to a rotation of the mental awareness around the different parts of the body. The practice of Nyasa illustrates the innate understanding of human physiology these ancient Yogis had.

The effect of this rotation of consciousness (bolstered by the other stages in a Yoga Nidra) triggers a deep release of muscular, emotional and mental tension, which is rarely achievable through just resting or "trying to relax". This state of Yoga Nidra creates a "relaxation response" which is the direct opposite of the "fight or flight" response. As mentioned earlier, one of the primary benefits of this level of relaxation is the balancing effect it has on the nervous system as a whole and the strengthening effect on the immune system.

Footnotes (1) http://www.yogameditation.com/articles/issues_of_bindu/bindu_11/the_relaxed_state_and_science see paragraph headed "The original Yoga Nidra compared to relaxation based on suggestion".

(2) http://www.yogameditation.com/articles/issues_of_bindu/bindu_11/ pictures_of_the_brain_s_activity_during_yoga_nidra , also reproduced in Yoga Nidra by Swami Satyananda Saraswati ISBN 81-85787-12-3 page (3) http://www.yogameditation.com/articles/issues_of_bindu/bindu_11/the_relaxed_state_and_science see paragraph headed "The immune system is balanced" (4) " Beat Fatigue with Yoga", by Fiona Agombar, Chapter 9, Chronic Fatigue Syndrome, What causes CFS?, page151 (5) Yoga Nidra Swami Satyananda Saraswati ISBN 81-85787-12-3 p14

To read more of Rachel’s article here’s the link: http:// www.dragonmaster13.pwp.blueyonder.co.uk/syfme/yogaNidra.php . She also has a yoga group: Sheffield Yoga Group and her own website calm and create:

http://www.sheffieldyogaforme.org.uk/ http://www.calmandcreate.co.uk/

Grads Team Roles and Emails General Management Team Administrator -Jenna

Rogers - assessing and rewriting/updating of templates, letters, any other basic paperwork, involving working with AYME. Minutes in meetings. Answers Graduates email account: AYMEGraduates@hotmail.com or her personal email: jennlander26@yahoo.co.uk

Finance Co-ordinator - Chris Theobald - keeps track of teams’ expenses against grads ‘pot’, checks breakdown from AYME against budget sheet, keeps printing invoices. Email: chris_theo84@hotmail.co.uk

Membership Co-ordinator - Gareth Crittle - sends out membership forms as well as Jenna and creates membership database. Email: gareth.crittle@googlemail.com

Member/ Volunteer Support and Wellbeing Coordinator - Leshia Shevchuk - links to AYME Support Worker and helpline/advice. Distributes ‘Feedback Forum Sheets’ to team to see how they feel their volunteering is going. Contact if having difficulties and alerts of any news. Eventual setting up of a ‘list of regional support groups’. Email: l.shevchuk@hotmail.com

New Volunteer Manager - Jenna Rogers Contact if interested in volunteering.Settles newbies in and answers any queries they have. Email: jennlander26@yahoo.co.uk

SAMS Team SAMs Co-ordinator- Tori Dinnen. toridinnen@live.co.uk Co-ordinates SAMs services seen on Member Services page

Buddy Co-ordinator and TextMates Scheme SAM’s Birthday Card Co-ordinator- Tracy Holland. tracymupp@ntlworld.com

NoteBook Scheme Team Notebook Co-ordinator Tracy Holland Circuit 1 Manager Tracy Holland

Limericks!

There was a farmer from Leeds, Who ate six packets of seeds, It soon came to pass, He was covered with grass, And he couldn't sit down for the weeds!

An epicure dining at Crewe Found a very large bug in his stew. of candles can be lit from a “Thousands single and the life of theshout candle Saidcandle, the waiter, "Don't will notwave be shortened.

Happiness never And it about, decreases being Or the by rest willshared.” be wanting one too."

SHOP AT AMAZON The AYME website has a web link to Amazon, where you can help raise funds for AYME without costing you a penny. Just by us all shopping there a percentage of sales goes to AYME. You can also shop in the same way at CD-Wow, Play.com, WHSmith and Game. The link can be found under the fundraising section of the AYME website www.ayme.org.uk NEWSLETTER CONTRIBUTIONS: EMAIL THEM TO US AT ADDRESSES OPPOSITE OR SNAIL MAIL:

tracymupp@ntlworld.com

Circuit 2 Manager Lesley Dawson l_dawson24@hotmail.com

MessageBoard Team Messageboard Co-ordinator -

?

runs the messageboard and facebook group for grads, introducing new members to the sites and updating the messageboard database. chapsmills@googlemail.com

Messageboard Round-Ups Manager for SAMs work with Tori and Messageboard Co-ordinator to setup for SAMs

Virtual Library and Contact List Team Virtual Library and Contact List Co-ordinator

Rachel Ind Basement Flat, 250 North Road West, Plymouth, Devon PL1 5DG rach83_7@yahoo.co.uk

Stacey Laird 76 Majestic, Clifton Drive North, St. Annes-on-Sea, Lancashire, FY8 2PH stace_laird@hotmail.com

l_dawson24@hotmail.com

Stepping Stones Team

ALL OTHER ENQUIRIES EMAIL JENNA AT:

Proofreader/ Jenna Rogers Editors Stacey & Rachel (emails opposite) Copyeditor Writers below: AYMEGraduates@hotmail.com

Got a problem?

Need some advice?

AYME help line 08451 23 23 89

How you can Help AYME AYME STICKY LABELS Raise awareness and money for AYME by decorating all your envelopes with these cheery stickers, £1.50 for 50 stickers. For more information contact Harry at sales: sales@ayme.org.uk PIN BADGES

Available to give help and advice to all Graduates Bright yellow enamel AYME sun badges, great for cheering everyone up on bleary Open Mon-Fri 10-2pm + Wed 6-9 pm

AYME News SOS Save Our Services Many specialist CFS/ME adult and paediatric services are now under threat of severe cutbacks or closure. AYME strongly urges its members to contact the service they access to ask what the status is and where necessary write to your MP to fight to keep what little service exists for ME/CFS patients.

AYME fighting for fairer benefit assessments for M.E./CFS Action for M.E. have prepared a detailed response to the Government’s consultation on improving the benefits system, to which AYME contributed on behalf of children and their families. Go to www.afme.org.uk.The Forward ME Group, who represent the UK’s main ME/CFS charities, including AYME are also making recommendations to improve the fairness and effectiveness of assessments.It has information about the group and archives of minutes from past meetings at: www.forward-me.org.uk.

Also to make a complaint about the assessments in relation to M.E./ CFS and appeals, the AYME website has a list of the names and addresses of Regional Tribunal Judges. Please see the ‘Benefits’ section of the website. There’s also guides on completing ‘Disability Living Allowance’ Claim Form in the section Severe ME/CFS: A Guide to Living.

AYME fighting for more support needed for school children with health conditions The ‘Health Conditions in Schools Alliance’ made up of over 30 children’s charities and organisations, with AYME being the voice of Children and Young People with ME, is working on behalf of children with long-term health conditions. SAPHNA - School and Public Health Nurses Association is backing the Alliance’s call for explicit duties to be placed upon NHS commissioners and GP Consortia to commission training and support for schools from the appropriate part of the health service for a child with a long term condition.

days, available for a minimum donation of £1. Please contact Harry at sales for more info: sales@ayme.org.uk

SONNY SMILE STICKERS Bright 11cm stickers, great for decorating any surface you can find, 75p each or 3 for £2.

Please contact Harry at: sales@ayme.org.uk SHOP AT AMAZON The AYME website has a web link to Amazon, where you can help raise funds for AYME without costing you a penny. Just by us all shopping there a percentage of sales goes to AYME. You can also shop in the same way at CD-Wow, Play.com, WHSmith and Game.

The link can be found under the fundraising section of the AYME website www.ayme.org.uk DONATE AS YOU SPEND By buying vouchers to spend in supermarkets or up to 50 high street retail outlets, you can donate to AYME at no extra cost to yourself. While you pay for the price of the voucher (DAYS) will donate up to 3% of the total to AYME. The vouchers can be bought online at www.vouchers4charity.org.uk or by calling 01323 848686. AYME can also gift aid your donations through this scheme if they receive a signed Gift Aid form.

AWARENESS RIBBON Classic fundraising ribbon 50p each, contact Harry at: sales@ayme.org.uk AYME T-SHIRTS Suitable for both sexes. Medium (40’’) or Large (44’’) £6 each. Quality Cotton To buy contact Harry at sales@ayme.org.uk

AYME LOOKING FOR AMBASSADORS AYME are looking for AYME Ambassadors for info contact pr@ayme.org.uk

New book, ‘Chronic Fatigue Syndrome’ by Elizabeth Turp Aimed at educating the people around M.E./CFS rather than selfhelp.

Enquiries to: AYMEGraduates@hotmail.com