Friday, 23 May 2014

Adopt CCC for ME in N.Ireland - Final push for signatures!

Over 7000 ME and Fibromyalgia patients in N.Ireland, and there are no specialist healthcare services to help them!

The Newry and Mourne ME and Fibromyalgia Support group hope to change that with a petition to Edwin Poots the Health Minister for Northern Ireland's Local Assembly.

Please help this cause by signing and sharing the petition widely in the last few days of May, so that it can be presented with as many signatures (local and international) as possible.

Thank you.

Sunday, 18 May 2014


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House-Keeping post for Bloglovin

Saturday, 17 May 2014

Guest Post from Erin Fromkes - Art in Illness

Chronic illness causes one to experience life in an extraordinary way. As with many artists the creative nature comes from a combination of internalized experiences and imagination.

When I am able, I cannot resist the opportunity to paint my interpretation of the medical and psychological happenings through which I’ve lived. My pieces have a tendency to cry out. They have a trapped spirit within that wants to be seen, heard, to reach another. My works are portals that connect me to an outside world.

One style of my work is short-lived. These temporary pieces, captured through a series of photographs, are created using pills, pill powders, teas, tinctures and medicines. The use of these familiar substances, which I must consume regularly, serve as mediums bringing forward strange figures and ghostly portraits.

Temporary works, arising to disappear, reflect a philosophy of my illusive symptoms, disease, life, time, and existence. These dark visions aim at releasing elements of my illness and strive to capture a visual essence for my viewers to experience. Along with these are emotions of fear, frustration, anguish, loneliness and a erie desperation to be recognized.

Alongside my pill creations, I’m drawn to create mixed media works. Using materials that are personal and readily accessible, I create paintings that combine acrylics, oil paints and torn papers.

My backgrounds are a collage of letters, notes, lists, old prescriptions, doodles and other papered moments of my life. These fragmented scraps make for interesting backdrops and quickly become more intriguing once an image is painted over top. Areas of the background are left untouched for the viewer to see, allowing little bits of information to be gathered, processed and interpreted.

This layers myself into each piece and lets the inquisitive viewer learn more about who I am. Connecting to an audience in such a way is therapeutical, for this art helps me to feel less detached, acknowledged, and somehow important, if only for the briefest moment.

Guest post by Erin Fromkes

More of Erin's amazing images can be found on her FB page HERE 

Monday, 12 May 2014

Guest post from Sarah: Capturing the essence

How to make the most of life when faced with great restrictions due to severe ME

I have been living with severe ME for several years. The restrictions of ME have meant that my level of activity has ranged from lying on the bed all day, unable to stand, only just able to sit up in bed and chat for a few minutes – to moving around the house and garden in an electric wheelchair, riding a mobility scooter for 20 minutes, chatting for an hour and a half.

Before the illness I led a very active life – as is the case with most ME sufferers. I was a full- time infant teacher and I played the piano at our school. I acted in amateur dramatics and played the flute in a concert band. I swam, walked, went on foreign holidays, regularly played Bridge and had a full social life.

What a change from all that! I have had to come to terms with living a very different sort of life now. Most of my emotional stress comes from yearning to do the things that I used to do and feeling frustrated with the limitations that now dictate my life. When I am able to truly “be in the moment” appreciating what I have right now, however limited, then I am at my happiest. Obviously this is difficult to sustain. One of the most difficult traits of this illness is the way it allows you to begin to get your life back, and then cruelly snatches it away again.

I’m continually trying to find ways to create the best quality of life I can, whatever stage the illness is at – to really savour the few minutes activity between rests, to make the most of limited energy and concentration by doing something I really enjoy. That was how I developed the idea of “capturing the essence.” Put simply, it’s about identifying the enjoyable essence of a favourite activity and trying and to find a way to give ourselves that experience – despite the mental and physical limitations.

With some activities it’s possible to do the same activity as before, but for a shorter time. I have often had one course in a restaurant and taken the dessert home to have later, after resting! I have also seen several first halves of plays, and sometimes the second half two days later – and at the matinee, as I cannot be out late in the evening. Our local theatre now gives me complimentary tickets for the second performance. Maybe the day will come when special two-part ME tickets are available!

Some activities, however, seem impossible to do anymore. This is where “capturing the essence” works best. Here are some ideas and ways to re-create the essence of the experience depending on the severity of the illness at the time.

Activity – walking by the sea – the essence is being by the sea, moving, fresh air.
Lie on the bed with the window open listening to sea sounds on a CD.
On the bed look at pictures of beautiful seaside views.
Watch a TV programme like “Coast” and imagine being there.
Sit by the sea in a wheelchair.
Get pushed along the sea front in a wheelchair.
Ride a mobility scooter independently by the sea.

Activity – being an infant teacher – the essence is being with children and helping them to learn.
Have friends’ children to visit and lie on the bed reading stories to them, sharing books, hearing them read, singing. Do writing, drawing, cutting and sticking activities with them on the bed. I’ve found that children love being on the bed with me!
Have a sand and water tray in the garden for friends’ children.
Teach piano for a few minutes to a friend’s child.
Go into the school where I used to work for regular short visits to read to the class or listen to children read.

Activity – amateur dramatics – the essence is performing, learning a script, being part of a team, working on something creative with others.
Learn and recite poetry with family and friends
Read a story to a friend
Record a CD or video reciting poetry
Play scrabble, Pictionary, charades etc with others

Activity – playing music in a group or orchestra – the essence is creating music with others and performing
Play duets at home with a friend
Perform the duets at home for family and friends, even if only for 5 minutes!

Activity – swimming in the sea – the essence is the sensation of floating in water, smelling the salt water on my skin, being in the sea
Paddle in the sea from the wheelchair – not easy, but it is possible!
Paddle in a bowl of seawater on the prom or even in the garden!
Splash seawater over my body
Lie in the bath and imagine………
Use a hoist to get into a swimming pool and use floats if your muscles cannot keep you afloat

Activity – gardening – the essence is being outside, feeling the soil, making things grow
Have raised beds that you can reach
Use pots raised to suitable height
Plant seeds and bulbs in small pots that are manageable to lift

These activities may not be your favourite hobbies. However, I hope that my idea of “capturing the essence” may encourage you to be creative and to find ways to adapt your chosen activities in order to give yourself the best quality of life possible – no matter how the ME is behaving!

Concentrate on what you CAN DO NOW. Don’t compare yourself to when you were well. Focus on your quality of life NOW, whilst keeping a balance of rest and activity. Prioritise, and get help with the necessary personal and household tasks, so that all of your energy doesn’t go on merely surviving. PACE yourself, PRAISE yourself, be POSITIVE, PATIENT and PERSEVERE!

Good luck!

A post for #May12BlogBomb
by Sarah Caddick
(First published in ME Association magazine)

May 12 Blog Bomb Link List

What a fantastic response there has been to the #May12BlogBomb !
(Intro post about the Blogbomb here.)

Thank you everyone: writers, readers, sharers and visitors. Your responses have made my day.

Thanks to @Fibromodem on Twitter for image

May 12 Blog Bomb Link List:

My own posts:

Ability for Agility: Why do I use Wheels?

Just ME: Why NOT Exercise?

Guest posts on my Just ME blog:

Just ME: Guest post from Alexi Dinks - MEaning of Life

Just ME: Guest post from Elaine Stammers - My ME Story

Just ME: Guest post from Erin Fromkes - Art in Illness

Just ME: Guest post from Holly - My Daughter and ME

Just ME: Guest post from Penelope - My ME Story

Just ME: Guest post from Rosie - A New Me... My Fibro Life

Just ME: Guest post from Sarah: Capturing the essence

Just ME: Guest post from Wendy Boutilier - ME Awareness

Posts written on independent blogs:

A Life Within an Illness: It's time I 'fessed up...

Allan Dickinson: Another Door Closes.

An Endless Yearning: International CFS/ME and Fibro Awareness Day

Angelsong: M.E. A Day in My Life

A Path Through The Valley: Observations on ME

Artifacts of ME: May 12th for ME Awareness

All About ME:  M.E Awareness Week #may12blogbomb

Being the Imperfect Mom: I'm not just a Survivor

Brainless Blogger: #May12BlogBomb

Carole: May 12th ME Awareness Day

Cheering from the Sidelines: Tethered Butterflies

Chronic Mom: We Were People Too

Chronicles of a Chronic Illness Sufferer: Twas the Night before May 12th

ChurchMag: M.E. Awareness Day 2014 #May12BlogBomb

Cinder Bridge: ME Awareness Day - Free Karina Hansen

Crazy Purple Mama: The Significance of May 12th

CurranKentucky: Letting The Past Go

Dannilion: ME Awareness Day 2014

Dr Courtney Craig: A CFS Story

Elizabeth Turp Counselling and Training: The Impact ME/CFS has on Life

Edward Court: My Story - Living with and Recovering from CFS

Experiment Number One: This is CFS 2014

Fibro & Me: Fibromyalgia Awareness Day  

Fibro & Me: Timeline Project Video Diary

Fibromyalgia... My Own Experience: May 12th Blog Bomb

Freckles & All: About ME

Get Up and Go Guru: This is ME - Guest blog by Katherine (and links #This is ME)

Growing Insights: ME/CFS/Fibromyalgia Awareness Day 2014 

Healing from CFSME: Chronic Fatigue Syndrome ME - Photos of my experience

Hayley-Eszti - Life, Love and Fighting ME: M.E awareness day! My story

Hello Kitsune: This is ME - ME/CFS Awareness Week 2014

If I were you I wouldn't start from here: To a first approximation, I'm dead.

Info Freak: About ME

James Cooper: This is ME

Jess' ME/CFS Blog: Why does Awareness Matter? 

Jess' ME/CFS Blog: #This is ME Blog Chain Event

Katherine and M.E. : ME Awareness Day 2014

Kealie Mardell: SeeME: Guest post - We desperately need your help

Kealie Mardell: SeeME: My M.E. Story for May 12 International Awareness 2014

Kelli A Ellis: Thunderclap!! Today is May12th ~ The International Awareness Day ... 

Laura's Pen: A Day in the Life of M.E.

Learning to Live with ME/CFS: International ME/CFS Awareness Day 2014

Life as we know it: My May 12 Blog Bomb

Life with ME whilst Studying: Revising ... Or not as the case may be

Limited Capability: Why does stigma still surround ME?

Living with Fibromyalgia: Fibromyalgia Awareness Day 2014, My Update

Mama Chill &M.E: LP - Is It All Spin?

Me and My ME Journey: Reflection - Behind the Mask

Me, Michael and ME: M.E. Awareness Week: #may12blogbomb

Me, Mine and Other Bits: I'm no Florence Nightingale 

Me, Myself and I: Life for a Young Person with ME

Me, Myself and ME: This is ME 

Me, Myself and ME: But This is ME 

Montague Mouse: This is ME Awareness Day 2014

Mrs KP Place: #May12BlogBomb

My Chronic Life Journey:  A letter to my illness

Nonsense from my Sofa: #May12blogbomb “This is the face” of M.E.

No Poster Girl: My Gallery of Dead Possessions

Occupy CFS:  On it or in it?

One Mad Woman and ME: I really can't be bothered any more

Ordinary Miracles:  Three Days in the Life...

Peak Rambler's Ramblings: Bell's Palsy, Flu and Lymes Disease

Project 52: I want to talk about... ME

Pajama Daze: The Uncivil War - confusion and controversy over ME/CFS/Fibro

Real Life Sisyphus - Student Life with CFS/ME: CFS/ME Awareness Day 2014

Sand's Life: My Story

Sarah Amelia Xandria Whining: ME Awareness Day

Sarah at Saje: ME Awareness day 2014: Strength in Unity

Sa Ya Ha: What is ME? ( post in Japanese) 

Sa Ya Ha: We are not alone: It's all about ME (post in English)

Sisty Quilts: All About ME

Sleeping on the Edge of Sleep: International ME/CFS & FM Awareness Day

Slightly Alive: May 12 - My 20 Years with Myalgic Encephalomyelitis

Smoothie Spoonie: ME Awareness

Spooncast: Today is ME Awareness Day

Take These Broken Wings: He Calls Himself ME

Tanteros: Misattribution

The Huffington Post: Am 12. Mai ist der internationale ME-Tag (post in German)

The Life of the Live, Love, Laugh Girl: ME Awareness - The Origin of Sleeping Beauty

The Life of the Live, Love, Laugh Girl: ME Awareness - What Lies Beneath Snow's Beauty

There's No Such Thing as Perfect: ME Awareness Day

The Other Side of The Stretcher: The Other Side of The Stretcher

The Get Up and Go Guru: My 5 Fave Ways to Connect ...

The ME/CFS Self-help Guru: 10 Things Everyone Should Know about ME/CFS

This is My Life ~ Surviving Fibromyalgia: Fibromyalgia’s impact on my life

Three Quarters Full: #May12BlogBomb

Tips for ME: May 12 Blog Bomb - Fairy Story of the Truth  

Two Wishes: Life with Chronic Fatigue Syndrome

What Will Happen to ME: M.E. Awareness Day

Wheeling Along 24: Me & My ME

Wishful Thinker 77's Blog: My Struggle with ME/CFS

Wolf Dreams: Chronic Fatigue Syndrome - It's an Illess!

Your Jaw Never Gets Tired: The Real Face of CFS ... Reblogged

#ThisisME. Please check out  for more blog posts on #MEawareness.


Thank you to all who participated in the 2014 #May12BlogBomb - I have been both surprised and delighted by the response from bloggers from all corners of the globe.  

Now a last link that was posted by Marie of CurranKentucky - and it made me laugh. CurranKentucky: Bomb Making

ME Awareness - Why NOT Exercise?

Recently I have seen several articles advising ME patients on how they should safely "exercise". 

I take issue with this because, in common parlance, use of the word "exercise" implies elevating your heart rate and aerobically challenging your body.

Thanks to recent presentations by Dr Mark VanNess, we now know this is not a good strategy for coping with ME.

So my post for ME Awareness is going to explain why the word, "exercise", gets my back up so much!  I suspect I am not the only ME sufferer who reacts this way!

Why ARE we so sensitive to this word, "exercise"?

Let's look first of all, at the advice about exercise given to the general public in the UK.

Turning to the good old NHS website, and we can find a plethora of articles on how we might build more exercise into our lives.  All good so far.

However I'm interested in how they define exercise, and in the article on the Benefits of Exercise I found the following:

What counts?
Moderate-intensity aerobic activity means you're working hard enough to raise your heart rate and break a sweat. One way to tell if you're working at a moderate intensity is if you can still talk but you can't sing the words to a song.
Examples of moderate-intensity aerobic activities are:

  • walking fast
  • water aerobics
  • riding a bike on level ground or with few hills
  • playing doubles tennis
  • pushing a lawn mower
Daily chores such as shopping, cooking or housework don't count towards your 150 minutes. This is because the effort needed to do them isn’t hard enough to get your heart rate up.


So, it seems MY understanding of the word "exercise", is indeed the way the NHS view the word.  Exercise basically means getting breathless and sweaty.  Even daily chores like housework don't count!

So WHY oh WHY is this word ever used in the context of advice about ME?

Could it be that the medical profession use the word in a different way?  Maybe that is part of the answer, afterall physios talk about "stretching exercises" and these exercises don't usually involve an elevated heart rate?  Oh and schools also give out maths "exercises" as homework!

So perhaps "exercises" (that is: activities to do as a form of practice) are totally detached from the meaning of our word "exercise" (activities that raise heart rate)?

If that is the case, then "exercise" (singular) should still never be used in an ME title!

Maybe we could find a better word?

I like the idea of using the word "movement".  Even the word "stretching" sounds too much like a fitness activity for me.  Let's face it, I fully agree that it is a good idea to do some sort of activity that will help reduce the amount of muscle wasting and potential bone loss.  Yet throwing the word "exercise" into the title of an ME article often means that the wrong impression is given.

So what level of "movement" should ME patients do?

Exercise in the conventional sense is obviously out!  Dr Mark VanNess has explained how keeping heart rate low is important, because an ME patient cannot increase their aerobic respiration effectively.

When I heard him speak in Newry in February this year, he suggested that we keep our HR below 110 bpm as a good starting point.

Elsewhere I've seen the formula

(220 - Age ) x 0.6 

used to find a suitable maximum HR for some-one with ME.

In my case this works out at only 101bpm!

It is incredibly difficult to do anything with this as a constraint.  Walking across the kitchen to make a cuppa usually lifts it to 110, and having a bath or shower raises it above 140!

Nothing, that the NHS would count as "exercise", could possibly be done within this constraint!!

Yet the NHS is so wedded to the idea that exercise is some sort of magic "cure all" that they can't admit that advice to exercise will actually make ME patients much worse!

I wish that those who write about preventing physical decline in ME would now avoid using the word "exercise".  This simply because the general public, and well meaning friends, just read the title and forget the context.

Exercise, in the sense that we all use the word, is never going to help ME.

Dr VanNess used the analogy of a credit card to explain how ME patients are slammed with huge interest rates when they exceed their low income energy budgets.  He said that keeping exertion levels to a minimum could help ME patients to avoid the high interest penalties (often called a "crash") and so get the most from their limited energies.

Obviously exercise in the conventional sense was not what he was talking about! In my view the word should now be totally removed from the lexicon of ME related writings - unless of course it is to advise that "exercise should be avoided"!!

I'll end with a quote from Dr Paul Cheney:

“The whole idea that you can take a disease like ME and exercise your way to health is foolishness. It is insane.”

Links to other blog posts written for #May12BlogBomb can be found at:

Guest post from Penelope - My ME Story

My ME Story by Penelope McMillan

I was a busy person. My usual sleep pattern was five hours each night, plus a nap on the weekend. The rest of the time I was doing paid work, voluntary work, postgraduate study, raising two children and helping manage our rural property.

At the age of eighteen I had contracted Lyme. Lyme had yet to be recognised and understood, so doctors were baffled by my ill health and had no diagnostic suggestions. I was chronically unwell, but at a level I adjusted to. My very active lifestyle just required me to push through the fatigue.

Suddenly, pushing through the fatigue no longer worked.

Any form of effort left me exhausted, physically, mentally and emotionally. I dragged myself through the days, lying down at every opportunity and accomplishing only a fraction of my usual workload.

My husband left. The children and I relocated near a lifelong friend who was dealing with Chronic Fatigue Syndrome. I borrowed a book from the library to understand her CFS better. There I was! A multitude of symptoms that I had assumed were unrelated were all there in one place. There was no question about it. I had CFS, better known as myalgic encephalomyelitis or ME.

I have been fortunate. My friend had already been through many, many therapists and finally found a wonderful physician, so I was able to go directly to him for help. He tested me for Lyme and treated it successfully, which reduced my symptoms from severe to moderate. My children were old enough to be somewhat independent around the house. I was able to get a Disability Support Pension.

Picture of me out, on a very good day, accomplished by resting completely for days beforehand 
and arranging to rest for days afterward

So what is a day like for someone as fortunate as I am? Pain and exhaustion are still constant companions. I am covered in bruises and scratches from my clumsiness. I measure my activity level by time out of bed: five hours total is a very good day while on a bad day a few trips to the loo are about it. While in bed, on a good day I can enjoy reading light novels and messing about online. Bad days in bed are an endurance test: pain of all kinds, in all parts of my body; inability to relax or rest, let alone sleep; mental confusion; muscle weakness.

How do I know when I am heading into a bad day? As I fill a glass with water it slips through my hands to the floor because I am too weak to hold the glass when it is weighed down by water. As I stagger up the hallway at home I realise I am falling against the wall because my balance has gone. I recognise that I am hungry but my brain is too tired to make a decision about what to eat so I stay hungry.

Life in the slow lane (the oft-photographed dog saying clearly with his eyes, 
“Not another photo, surely?”)

The one advantage to my illness has been that I was already out of the workforce when my son was injured and I became his primary carer. The two of us look after each other. Recently I also became the guardian for my aunt who has dementia – this has been too much for me, but I struggle on and do my best.

There are indignities to ME. The constant poverty includes the inability to afford paid help, the struggle to pay for recommended nutritional supplements, the constant pressure to decide between spending on heating/cooling or on prepared microwavable meals. To watch your children miss out on things their friends take for granted is painful, whether they miss out due to lack of money, lack of parental involvement, or being unwilling to bring friends home to a house that is embarrassingly cluttered and poorly maintained. Being glared at for using a disabled parking space, because your disability is an invisible one. Getting halfway through a sentence and not being able to find the words to continue. Stumbling in public, as though drunk. Friends who think you are rejecting them because you simply cannot accept their invitations.

ME destroys careers, tears families apart, shortens lives, and holds people hostage to a painful chronic illness that has no recognised treatment and few knowledgeable doctors. I dream of treatments. I have no expectation of an imminent “cure” but great hopes that current research will point the way to reducing the symptoms and allowing those of us in the ME community to increase the scope of our daily lives.

Next time you see an appeal for ME, whether it is seeking a small donation toward research or asking for your written endorsement for improved services for the more severely ill, please remember my story. As I said, I am one of the more fortunate. So many are far sicker, have less support from their doctors, and have far less assistance at home. They need all the help we can give them.

by Penelope McMillen
for #May12BlogBomb

Guest post from Holly - My Daughter and ME

Image by Wendy Boutilier

Yesterday I took my child for her 2 year check-up. She is growing and happy! I saw a woman there for her first wellness post-hospital check, at least from the looks of her tiny baby and the tell-tale slow and painful walk it appeared she had just had a baby. (I remember moving like that - like you either pushed a bowling ball out or had a bowling ball cut out of you!)

On the way home, I was thinking about the contrast of where I was two years ago when I was there for the first after hospital visit and this visit. Not just the differences in my daughter but the differences in my health.

I slowly and painfully walked into the clinic about 4 and a half days after an emergency c-section. I was definitely overwhelmed. I had this amazing and tiny baby (4lbs 9oz that day) to care for. All those oh-so-fun postpartum things were going on in my body. I have this chronic illness, myalgic encephalomyelitis (ME), and I had no clue how my body was going to respond to all of this.

During the years leading to my pregnancy I was only able to leave the house about twice a month for the most part. Most of my days I was spending 23 hours in bed. I would have a good day or a set of good days and then would crash again back to my normal 23 hours stuck in bed. I wish these hours had been relaxing and reading and recovering. These hours were spent surviving. Pain, headaches, nausea, dizziness, sore throat, brain fog, IBS, weakness, post-exertional malaise, extreme muscle cramping are some of the symptoms I was fighting. I can hardly explain what it feels like. I would say it was hell but God was always with me .  I also have an amazing husband who sat with me and took care of our home and drove me to the doctor. He also made me laugh and helped me find joy in little things and tailored his vacation time to do things I could enjoy too.

Just because my body was in misery did not mean my soul was. I treasure the times I had with my husband during those years. I am awed by his patience. I have family who saw me suffer. They stayed with me while I was in the hospital. They took care of me before I was married. They encouraged me and gave me security when I suddenly had to leave college and quit work. They have remained a steadfast support for me. I know I can call on them for help when needed. I am blessed. I do not know how people face this illness without these buffers.

All of that to explain that I began to feel somewhat better towards the end of my pregnancy. The first five months were rough to say the least. Some people with my illness feel better during pregnancy but get worse again after having the baby. I had no clue what to expect. I just prayed and had to believe it would work out even if that meant that I would heavily depend on others to help care for my child. However, so far I have remained somewhat better. After the first year, I was able to start researching my illness a lot more. I have slowly discovered some things that help me function better and my health has improved a little more.

I am still sick every single day. Each day presents struggles but it also has joy, fun, and most of all hope. Most days I take care of my child all day. I can now cook. It has to be simple meals and my husband has to do all the clean up and some prep work. but I can prepare supper for my family several days a week. Before I could rarely cook. To me doing these everyday tasks is nothing short of a miracle.

I am writing all of this because today, May 12th, is ME awareness day. This has become very important to me. Before I had my child my awareness efforts were minimal. I like privacy. I don't like to draw attention to myself . It makes raising awareness difficult. However I think most of you would understand how fierce a mother can become when she feels she needs to protect her child. I want my child to have as healthy a mother as possible but she is also at greater risk of this illness because of genetics. I will kick this illness's butt in advance to protect my child if it is at all possible. 

For those of you who pray, please pray my child never has to experience any of this. For everyone, please take a moment to learn more about this illness and share that knowledge. Help me make a difference. Help us find a cure so no one else has to go through this wretched disease. 

Throughout the day on May 12th you will see lots of blog posts and #MEawareness messages. I ask you take a few moments to read them. Maybe even pass some of the information on.  Other useful tags include  #May12BlogBomb #May12th  and #RespectME.

by Holly 
for #May12BlogBomb

Guest Post from Rosie - A New Me... My Fibro Life

 A New Me.... My Fibro Life.

For many of us we have a pre fibro and post fibro life. Can you remember a date, or did things change over a period of time?

For me it was after I had had a fall, nothing dramatic,  just a slip really, but I hurt my back and 4 years later  I haven't regained my pre-fall life .  In fact through various circumstances, there is no chance of going back so I have to concentrate on this new me.

I didn't take to this new life very well. I fought it as best I could but no matter what I did, fibro always won....... I couldn't get my meds sorted,  so I was in pain and fatigued.  I felt guilty for being a burden on those around me, plus once I realised that I needed to leave work, I felt I was on the scrap heap and spiraled deeper and deeper into a life dominated by pain,  fatigue, fibro fog  &  depression. Duvet days rolled from one to the other, and I became distant from family members as I took to my bed.

Thankfully I had a great GP who suggested I undertake a course of CBT, this was not as a means of curing the fibro but rather as a way of getting me to realise that even with this illness I had lots of opportunities still open to me and that the scrap heap would have to do without me for a while!

One thing she suggested was taking up a hobby, we discussed various things I might do and I half heartedly agreed to try sewing. Friends and family tried hard to stop their smiles/laughter , I was not a natural sewer.

Little by little I started to feel a bit better, I made time to go out with a friend for coffee, just an hour a week but it was our  time, through her I began to try small sewing projects......even she says I didn't seem a natural that first time I sat at the machine.

I eventually enrolled in a  class and emerged a few hours later clutching on to a patchwork pillow......that was it I was hooked .... I had found something I could do & enjoy!

My crooked seams began to get straighter, my colours didn't seem to clash as much and I began to take pride in the finished projects no matter how small.

With each completed project my self esteem grew, through another friend I was introduced to a local needlecraft group, the ladies enjoyed passing on their skills and any fabric or patterns they no longer needed.

My circle of friends increased which was  very important as many of my pre-fibro friends hadn't followed me into this new life, we had little in common and they didn't know how to cope with someone who's illness was hidden and seemingly  erratic in nature.

So here I am two years post diagnosis, the effect of fibro is plain to day begins and ends with a handful of tablets, I can no longer do many of the things others take for granted, I rely on my husband more than I ever thought I would,  I never know from one day to the next how I will feel.

That said there have been positives in this new life, I have discovered a new different circle of friends, some I can meet from week to week , while others are spread out around the globe and we chat in forums in the wee small hours.

I have learnt more about myself and my ability to cope in difficult circumstances plus I have learnt that you are never too old to take up a hobby  and through it meet new people,  gain an interest and learn new skills.

So look around your new life ,is there an opportunity for you to bring something new and positive into it.....go on give it a try.

by Rosie
for #May12BlogBomb

Guest Post from Elaine Stammers - My ME Story

My ME story

In 2005 I began an unpleasant autoimmune illness called Lichen Planus and while covered in itchy spots for months, I began to feel run down and excessively tired. I was in the middle of a terrible stressful life event which went on for 5 years. So began the point that I think of as the start of my own personal journey with ME. In fact looking back I can point to at least 5 years before becoming aware of a poor immune system, and even further back being diagnosed hypothyroid. I can see other markers on the way further back still.

Now 9 years on from the Lichen Planus outbreak, my journey with ME has taken me through various points both up and down. I was able to start a new part time job in 2007, but in 2009 after a serious eye op produced a relapse, followed by a worse relapse less than a year later after catching whooping cough, I felt unable to return to the busy working environment and have never been back to work since.

I have spent 4 years trying out various approaches to getting better, and some have helped, though none so far has transformed things for me in a reliable way. The nature of ME is that it fluctuates and that I find the hardest part to live with. Some of it is now managed better, especially my severe food intolerances – and eating differently has improved my migraines too. However I still have immune dysfunction and get frequent cold viruses that really drag me down, and give me setbacks. I feel I have come to the end of things I want to try out though, and much of the treatment has been private, and therefore expensive.

I am very lucky that I have my 62nd birthday in June, and therefore I will get my State Pension later this year. I feel that the benefit changes have affected so many people with ME for the worse, though even in that I have been lucky to stay in the ESA Support Group for the last few years while I have tried to recover. I learned a lot about the benefits system, and spent 3 years helping and advising other people to navigate their way through, via an online support forum. If I had been pushed by anyone to prepare for work again, then I fear it would have been another relapse both mental and physical. It isn’t that I didn’t want to work, but much of the stress I had before I was diagnosed was caused by the Jobcentre process and that is much worse now for people with the sanctions policy.

by Elaine Stammers
for #May12BlogBomb

Image by Wendy Boutilier

Guest Post from Alexi Dinks - MEaning of Life

MEaning of life is....

the worst ever flu' with nose and eye snot - then times it by 100

bed after Songs of Praise and calling it a night on the tiles

looking like Noddy on smack - without the smack

being plugged into the National Grid and looking epileptic

staggering off a roller-coaster and puking on new trainers

your memory foam mattress feeling full of rocks

a mole wearing shades "papped" by a thousand flash bulbs

walking a tightrope after 20 tequila slammers

gorging on chocolate with Mississippi mud pie for afters

having 70lb dumbbells attached to your arms all day every day

getting up after Bargain Hunt to get an early start

the sleep deprivation of a million new mums

IM /texts scrolling on their own because you are so bog-eyed

always getting your muckin' words fuddled up

trying to pluck your eyebrows wearing goalkeepers gloves

the accumulative hangover of 365 uni fresher days

running a marathon attached to a bungee rope

knowing last nights vindaloo was not a great idea

screaming at the churchyard mouse for making a racket

slapping the git who said "no man is an island"

leaving your libido on that gut-wrenching roller-coaster ride

morphing into Worzel Gummidge on a bad hair day

calling a NATO peace-keeping force to open a yoghurt carton

waking up paralysed and finding it isn't a dream

grappling with buttons and zips on The Krypton Factor

discovering the true meaning of IBS - inevitable bum squeak

Mindfulness Empathy Compassion Forgiveness Serenity (ME/CFS)

having these talents and using them with wisdom and humour

 by Alexi Dinks for #May12BlogBomb
with thanks to Wendy Boutilier for the image

Guest Post from Wendy Boutilier - ME Awareness

May 12th International Awareness Day for Myalgic Encephalomyelitis 

On, 13th June 2006, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England.  The cause of death was stated as

'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS' 

Two pathologists could not agree which name to use - CFS, ME or ME/CFS.   In the end it was stated that CFS is a modern word for ME.  This is why CFS was used on the death certificate.

The pathologist also said –

'ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.' 


Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome, is a controversial illness.  ME or CFS has an image problem. Sufferers are often derided as malingerers.  Many people hear the word “fatigue’’ and think sufferers are merely tired.

In the 1980s, when alarming numbers of young career minded adults complained of a virus they couldn’t shake and were diagnosed with CFS, it was dubbed `yuppie flu’’. That flippant label stuck.

Adding to the confusion is uncertainty in the medical profession: is ME / CFS a disease of the body, or of the mind? No consensus has been reached.  For decades, the Medical Profession has laughed at us, changed our diagnosis to a bogus Chronic Fatigue Syndrome, Yuppie Flu, Bodily Distress Syndrome along with other equally demeaning names.  They have kidnapped our children and refused to allow parents or outside legal help to interfere with what they think is a cure.  They have in fact, compromised the health of these young PWME even further by using suspect treatments, inevitably leading to their premature death.

We have become the only patient community who are not allowed to be sick.  Due to our limitations we are physically restricted in our activities.  We are the “invisible”, the so-called “hypochondriacs”, the “complainers” and their ears have shut down to our cries for help.  

This illness is a neurological condition called Myalgic Encephalomyelitis or ME. There are many who think it is not real and many others, even within the medical profession, who think it is a psychological condition best treated with enforced exercise, which only worsens its effects. The extreme end of the condition is virtually unknown to even the most gifted and caring of the medical profession who pass the ball to the psychiatrists.  Too many of those doctors and lay people who acknowledge the illness, often refer to it by the ridiculous name "chronic fatigue syndrome", which is almost as damaging to ME sufferers as the symptoms we suffer.  Many have suffered and died because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession.  Severe cases are committed to mental institutions to treat an illness that is purely physical and never recover from the damage.  Being treated by psychiatrists when physicians are needed working from the results of cutting-edge studies.

The question we ask is obvious: how many people with ME have to die before our illness is taken seriously and huge, well-focused efforts are made to cure it through properly funded biomedical research?

Patient advocates argue that too much emphasis is placed on psychological and psychiatric issues and not enough on the biological. The US Centre for Disease Control reported that patients were sicker and had far greater disability than those with cardiac disease, chronic obstructive lung disease and depression.


Professor Kenny De Meirleir is one of the world’s leading researchers of ME. At a conference in Adelaide, the Belgium-based scientist said he believed ME was caused by many different diseases.  Professor De Meirleir said patients suffered a chronic over-stimulation of an increasingly dysfunctional immune system.  “ME is a serious, legitimate illness, devastating to those who have it, with a slow and uncertain recovery for many.’’

Dr Meirleir also stated “the spectrum of disease extends to the wheelchair and the bed-bound and has a significant mortality caused by both the often severe effects of the illness and by suicide.” 

20 web seminars with Dr. Kenny De Meirleir 


Myalgic Encephalomyelitis (ME) has been classified as a disorder of the central
nervous system since 1969 – (World Health Organization International Classification of
Diseases) WHO ICD 10 G 93.3

The renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced
emphasis to “fatigue”, trivializes the substantial disability of the disease – which
can extend to the wheelchair or bed-bound requiring 24 hour care
ME/CFS is characterized by neurological, immunological, gastrointestinal,
cardiovascular and musculoskeletal features – severe forms can present with
paresis, seizures, intractable savage headaches and life threatening complications

Amorphous definitions and diagnostic symptom criteria have contaminated study
cohorts and corrupted research data – researchers and clinicians participating in
the 2005 Adelaide ME/CFS Research Forum unanimously endorsed the adoption of the
acclaimed 2003 Canadian Clinical Criteria

ME/CFS may include clinical syndromes linked to infectious agents and toxic
exposures – incl. Epstein Barr virus, ciguatoxin, organophosphates and

Prevalence estimates are 235-700 per 100,000 affecting all socio-economic and
ethnic groups, and men and women of all ages  – more prevalent than AIDS,
lung or breast cancer

Disease impact  – quality of life equivalent to late stage AIDS, chronic
obstructive lung and heart disease and end stage renal failure
Some experience recovery (average 7yrs), some partially recover and a
significant proportion (25% 20) are permanently incapacitated

Biomedical Abnormalities:

Immune System, including:
• chronic immune activation and dysfunction, evidence of persistent
viral infection  (enteroviral, EBV and HHV),
activation of the 2-5A anti-viral pathway, low natural killer cells and
cytotoxicity, T-cell abnormalities, proinflammatory
cytokines and inflammation, increased cell apoptosis (death) and allergy.
• abnormal immuno-genetic expression
Brain/Central Nervous System, including:
• objective measurement of dysfunction  –deficits in working memory,
concentration, information processing, autonomic function (incl.
neurally mediated hypotension and orthostatic intolerance)
• abnormalities –regional brain hypoperfusion by SPECT, white and gray
matter abnormalities by MRI, inflammation, hypomyelination, neurotransmitter and metabolic
dysfunction by MRS/PET and abnormal spinal fluid proteins
• abnormal neuro-genetic expression
Endocrine System:
impaired activation of the hypothalamic-pituitary-adrenal (HPA) axis and abnormalities of neuroendocrine-genetic expression
Heart and Circulatory System: hypoperfusion, impaired
vascular control  (incl. abnormal response to acetylcholine), low blood
volume, vasculitis  (incl. raised oxidative stress, inflammation and
arterial stiffness) and heart dysfunction
Muscular: structural and biochemical abnormalities including
impaired muscle recovery after exercise (exercise responsive gene expression
abnormal, worsening after exercise)
Others: gastrointestinal dysfunction including food intolerance and IBS, mitochondrial dysfunction including abnormal mitochondrial
associated gene expression and ion transport channelopathy.

by Wendy Boutilier for #May12BlogBomb

Thursday, 8 May 2014

Getting Excited about #May12BlogBomb

#May12BlogBomb was an idea that hit me one morning after reading a collection of Dog Agility posts on "Starting your Puppy"!

So, as the morning was quiet and the family away, I just wrote the idea into a blog post and hit "publish".  Admittedly, I did a few edits later based on suggestions from others.

To my delight the idea was well received.

And just now I've noticed that #May12BlogBomb has become the most-read post on Just ME!!

To be honest, I think part of the success with this idea was down to the amazing image created by @Fibromodem - a Twitter friend - who generously created this fantastic image to promote the whole idea.

And also down to a collection of people who re-tweeted and shared the idea widely.  I owe you all many thanks - as of course I do to all those who have been busily typing away to get their message out.  

I'll let you into a little secret - I already have eleven links to blog posts written for #May12BlogBomb and know of others in the pipeline.  

So if you have a suitable post - just send me an email ( with your link, and let's see what impact we can make!  

Tuesday, 6 May 2014

The Me that Used to Be.

I wrote this in 2012 when newly ill, and first coming to terms with the fact that recovery would not be easily found.

The image below was made for inclusion on a FB page created to highlight
ME Awareness through Art and Poetry. I thought I might as well share it here too.

Click on image to enlarge

Friday, 2 May 2014

A Post for #ThisisME

#ThisisME is a blog chain event run by Louise Bibby of Get Up and Go Guru. 

A link to her post about the initiative can be found on her site here:
This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain

She has requested that each participant answer a series of questions about their illness - either on their own blog, or by emailing the answers to Louise herself, for inclusion on her blog. My contribution follows:


What is your name & how long have you had ME / CFS?

  • Sally Burch & I've had ME for just over two years now! 

Where do you live?

  • Northern Ireland - in amongst the rolling drumlins of Co.Down. 


  • 51 - is that even possible? But my eldest "child" is 25, so I must be maturing a little by now!

5 things about you that the people in your life probably don’t know? 
(non-illness related):

  • Liquorice is my favourite herbal tea.
  • I've grown 50 apple trees from seed, which are now in a hedge at home.
  • I can't touch my toes and never have been able to do so.
  • I've always thought I'd write a book one day - maybe!
  • I love Jelly Babies! (Sorry couldn't think of anything meaningful for the last one!)

5 things about you that the people in your life probably don’t know?
(illness related):
  • ME is not about me being tired all the time! Often I am not tired at all!
  • I really miss tending to my garden. Even the weeding!
  • On average I walk only 240 metres each day. (More & I'll probably crash.)
  • I'm not actually sad all the time about being ill! -  I'm just different now.
  • At last - my ability to daydream is an advantage!  LOL

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

  • That I don't want to be asked about my illness every time we meet. 

What is the most frustrating aspect for you of living with ME / CFS?
  • Having to say "No!" to so many things, when I really want to say "Yes!"

Anything else you’d like to say before finishing?


Louise says:

  • Any other bloggers who want to join the blog chain, please copy this and fill in your own answers. 
  • Then email so she can link to your blog post in her original post.
I’d Love You To Join In!!