Wednesday, 25 May 2016

#MillionsMissing & Northern Ireland

Today is 25th May and the day of the global #MillionsMissing campaign, where empty shoes are being used to represent active lives lost to ME.

These are my shoes, but they don't get the wear they deserve.  

Since March 2012 I have been unable to work, and incapable of walking normal distances.  The soles of these shoes remain without the scuffs from the paths that I might have trod since the day that I got ME. 

Of course I found other paths in life - not ones to "walk", but rather ones I've been pursuing in a more sedate manner.  This blog is one such new path.  

My activity with the charity Hope 4 ME & Fibro Northern Ireland is another.

In fact Hope 4 ME & Fibro NI are supporting #MillionsMissing campaign with an empty shoe demonstration at our up and coming conference - "Chasing Competent Care" on Monday 6th June. You may recognise the shoes in this flyer for the event!

We hope to get  a big attendance from patients, carers, medical professionals and other interested individuals.  There has been a lot of interest to date. (Click on the images below for more detail)

Care for the estimated 7,000 ME patients and some 22,000 fibromyalgia patients in Northern Ireland is almost non-existent and, where it is provided it is largely inadequate.

To quote Joan McParland:

"If you're a patient in NI and completely satisfied with your quality of life and having no hope for a better future, then just ignore and eat more cupcakes!
: the lack of a dedicated NHS Consultant
: the lack of supporting specialist NHS services
: the lack of education within the medical community
: the lack of awareness within the general public
: the fact it's almost impossible to get an accurate diagnosis
: the fact you will most likely be sent to mental health clinics
: the fact you will be advised to exercise and little else.
: the fact HSCB have done nothing since 2009 other than
agree the situation is 'frustrating.'
: the fact HSCB are insisting future NHS services will offer 
only Condition Management Programmes claiming 'many'
patients will return to work after 12 'talking treatments!'
: the fact HSCB medical advisers have reversed the decision 
to give financial support for our medical professionals 
education training events unless we solely promote NICE 
Guidelines (includes GET/CBT and little else)
: the fact parents are being put under investigation if their
child does actually get a diagnosis of ME.
: the fact, many medical professionals are interested enough 
to actually request educational material from our patient 
: the fact none of the above will change by talking, moaning, 
groaning sessions, being frustrated, being angry or just
accepting the intolerable situation. 
And more....
OR if at all able, join us in the Stormont Hotel on 6th June
OR send a family member or friend.
OR request your name be added to a pair of empty shoes here.......
OR post, deliver your empty shoes to any 'Hope' trustee, addresses available on request by PM."

Our event is advertised on here:

Also you can keep up to date with Hope 4 ME & Fibro NI activities on our announcements page here:

Please also check out the #MillionsMissing tag on Twitter. 

Thank you for your interest. 

Thursday, 12 May 2016

#May12BlogBomb Link List for 2016

Thank you to everyone who has submitted May 12th Awareness posts to #May12BlogBomb for 2016.  

Please use the #May12BlogBomb tag on social media when you share this list and blogposts from the list.

I will be accepting and collating posts during the day, and up to 5pm latest, so if you are a blogger with a post you have written that you would like to be included, please visit this post to complete the submission form .

My Awareness Posts:

Just ME: Disposable Energy?

Just ME: Some Days - All Days

Just ME: Preparing to "Princess" for Team Princess Hope (Updated)

Guest Posts on Just ME:

Just ME: Guest post from HellytheElephant - The Spoons Don't Work. . .

Just ME: Guest post by MerelyExisting is ME: I wish . . .

Just ME: Guest post from Sarah-Louise: A hashtag has just made me cry

Posts on Independent Blogs: 

A Life Less Physical: Your fibromyalgia toolkit

Alan's Album Archives: 'ME/CFS Awareness Week At Alan's Album Archives'

Artifacts of ME: What Happened with that MS Diagnosis Anyway?

Brainless Blogger: #May12BlogBomb Work compramises A Different Kind of Tired

Chronic Fatigue & Me: 1 Week About ME

Chronic Mom: 3 things to remember during a fibro flare

Fed Up with Fatigue: What I wish others knew about fibromyalgia and ME/CFS

Fibrodaze: International Fibromyalgia Awareness Day Online Events

Fibro Warriors ~ Living Life: Why is May 12th International CFS and Fibromyalgia Awareness Day?

Grieving for me because of M.E.: Today is ME Awareness Day…..

Gwenfar's Garden: Garden visiting with ME

Jan's Place: What do we want? From a person with M.E.

Just A Spoonful Podcast: May The 12th Be With You

LENNAE'S WORLD: ME Awareness, Symptoms with ME

Katie Cupcake Life With ME: Knowing your limits does not make you negative!  

Laura's Pen: The M.E. Adventures comic: energy and exertion

LavenderDojo: Thyroid-immune interactions; rT3 and TGF-beta1

liebjabberings: ME/CFS: Writer’s personal and professional inextricably entangled

Lightening the Shadow: Seven Years May Be a Turning Point

Little Wings: Living with M.E. is like having to re-invent yourself everyday

ME/CFS Self-Help Guru: What I want you to understand about ME/CFS for May12th International Awareness Day

ME Australia: ME and CFS Awareness Week: 11 - 17 May

MEcuperating: Living with ME

Melanie Schickedanz on Huffington Post Blog: Am 12. Mai ist der internationale ME-Tag

ME Support: The Power of Creativity

motherinlawsblog: Don't roll your eyes at ME!

My Spoonie Life: Why the public opinion of M.E. needs to change

Sarah at Saje: Isolation and ME

Slightly Alive: For May 12, 2016: ME is not a "mysterious" disease.

Spoonseeker: Out of the Blue

Sue Stevenson: The Slow Rise

The Get Up and Go Guru: Never Give Up! – ME / CFS International Awareness Day 2016

The Person Who Disappeared: What is ME? A special post for ME awareness week

Trishrhymes: ME and me

Undies on the Outside: Behind the Undies on the Outside Challenge

Utting-Wolff Spouts: 12th May, how I dread this day, or: Awareness and compassion fatigue

Verbena Days: Imagine ME


Previous Link Lists can be found here:

#May12BlogBomb 2015 Link List 
May 12 Blog Bomb Link List  (2014)

Guest Post from HellytheElephant: The Spoons Don't Work. . .

Over the last year, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in bad pain that is apparently never going to get better, and has no specific cause.

Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the world of wellness and finding a safe haven with those who are generous with the little they can offer.

Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.

I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find it frustratingly unhelpful. In brief the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until spread like jam on the nearest mattress-‘spoonless’.

This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!

There is also the Energy Envelope (the amount of energy I have most days would feel easily into an envelope), Energy Account ( at the bank of un-co-operative where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on losing my marbles which becomes more likely with every day that passes..

Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes.

We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.

It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.

It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle,OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!

ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying ‘ ME goes on regardless, whilst you are busy making plans’


This post was first published on the Phoenix Rising Blog by HellytheElephant and is reproduced here with permission. The elephant picture is the one used by HellytheElephant as a profile picture.

Guest post by MerelyExisting is ME: I wish . . .

I wish…

I wish I could tell you that this past year has been a good one, that things have improved, that I was feeling better… sadly I can’t

I wish I could adequately convey to you how horrific, brutal, excruciating, crushing, overwhelming and relentless the very many multi-system symptoms of Myalgic Encephalomyelitis ME/Chronic Fatigue Syndrome CFS/Systemic Exertion Intolerance Disease SEID are

I wish you could understand how utterly unwell I feel, and how just about every part of my body is not working properly

I wish you saw the crumpled heap that I become after trying to do the very smallest of things

I wish I didn’t feel so pathetic, useless, invisible, stigmatised and guilty, even though I am fighting my hardest to get through every day

I wish that I didn’t feel like such a burden to everyone for feeling this continually unwell

I wish you could really understand how difficult trying to ‘live’ with this is

I wish I could tell you how scared I am for what the future holds

I wish I didn’t have to worry so much about my finances, and how I will manage to continue to support myself

I wish I was able to look after my elderly parents instead of them helping to look after me

I wish I was still able to work in the career that I loved

I wish I hadn’t been told that I would get better after six months, after two and a half years I can no longer keep that hope

I wish that I could sleep soundly and wake up feeling refreshed, well, to have some energy, to not feel like I have flu and a stomach bug plus a hangover and jetlag, having just run a marathon and been flattened by a steamroller all the time; to not be in constant pain, aching and stiff, that my muscles and joints worked properly, to be able to think and concentrate without my brain and body hurting, to not have throbbing headaches, searing migraines, eye pain, visual issues and sensory overload, to not have a raging sore throat, swollen glands and burning rashes, to not feel so dizzy and nauseous, to not have palpitations and my pulse pounding and racing, to not struggle with balance and co-ordination, to not have intense muscle spasms and restless limbs, to not have such problematic gut and bowels, basically to not feel like death

I wish I could walk more than a few steps without feeling that I am about to keel over or pass out

I wish I could get up and down the stairs with ease

I wish I could get showered, dressed and then be able to leave the house, and that I wasn’t either housebound or sofabound or bedbound

I wish that getting a cold or viral infection didn’t nearly finish me off

I wish I could hold conversations and laugh with family and friends without feeling really ill

I wish I could have some fun or even enjoy a bit of social life

I wish I could read a book or watch a film and remember it

I wish I could sit out in the sun

I wish I didn’t have to observe the world passing by from my window

I wish I didn’t feel so alone in having to deal with this

I wish that you knew and could see the ‘real’ me; the one that isn’t having to battle with my body every day, the one that isn’t living in pyjamas, either freezing cold or too hot, wearing earplugs and sunglasses indoors with the curtains closed, the one that isn’t struggling to remember what way is up, the one that doesn’t have to choose between making a phone call or using the computer or doing the laundry or preparing a meal or getting washed or dressed

I wish there was adequate, appropriate and proper healthcare support for ME

I wish there was much greater recognition, awareness and understanding of the immense strides in biomedical research taking place into ME

I wish that you would please do one thing and help the fight for support, awareness, understanding and research for ME

I wish that I didn’t have this horrendous, serious, complex, debilitating, chronic and misunderstood neuro-immune illness… but I do, and whilst the reality is so much worse that I am able to describe to you, no amount of wishful thinking is going to change that

My wish is that WE can start living again, and not just existing… what’s yours?

Guest post by MerelyExisting is ME @tweetsforMECFS 

For #May12BlogBomb 2016
(#May12BlogBomb 2015 post We Are Warriors )

Some of the many useful links if you want to know more about ME/CFS/SEID…

Guest post by MerelyExisting is ME @tweetsforMECFS For #May12BlogBomb 2016

Guest post from Sarah-Louise: A Hashtag has just made me Cry

A hashtag has just made me cry, which seems like one of the most ridiculous sentences I have ever uttered. Yet, here I am, unable to comfort myself, while I type this.

The tag itself is ‪#‎millionsmissing‬ and it links to a protest being staged this month for the lives of those with M.E. Lives like mine. The reason I am finding it so moving, is that it articulates a part of my experience that I have never had words for, and it makes me aware of just how many others understand it too.

For years at a time, we went missing completely. Even though we were always in one place; the dark of a room, with only the most vicious dragons for our company. Every sound and beam of light was a knife cutting through us with dreadful accuracy. For thousands, and hundreds of thousands, of minutes we were static and unresponsive and silent but there was no respite for us; not for a moment, because the terrible chaos we were experiencing never needed to stop and take a breath. However much we wanted it to. Existing was so physically excruciating that it seemed impossible to continue doing so. We were in the lands between life and death where there was no one but us, and the dream of being near to other people again. A dream so beautiful and neccessary, it has sustained us.

I went missing overnight. Faded out of a life I recognised and into another I did not. I still do not. You learn, as you go along, how to be fierce enough to survive this with who you are intact. It will take everything, it will strip you to the bones and still keep raging, with no mercy in its onslaught, and you are powerless in the face of its enormity, but then you realise one day that you get to choose. You get to choose one last thing; whether or not the small spark of light that belongs to you, and you alone, is snuffed out with it. You learn how to hold on to whatever it is you believe in enough, to still keep who you are alive instead of just your body.

You will never reconcile to being missing though. You will never wake to find it normal. You are always yourself, displaced, in this terrible new place you have no maps for, waiting for your real life to come back to you. The one where you can run and dance and reach out to put your arms around those who matter.

Perhaps the hardest part is simply the lack of practical help. The doctors are as out of their depth as you are. They can offer you nothing for your pain and, invariably, they cannot treat you. So you are exposed to an illness unchecked. You must face the storm, without a shelter.

You become so very aware of how much pain there is on this planet and that there is no more reason for your miracle to come than anyone elses, and you hope it comes anyway, because this is the only span of time you will ever have.

I do not want to stay missing.

And I do not want other people's lives to go missing too.

But I have no idea how on earth to stop it from happening to someone else, when the voices most raised about it are the ones who are being made to whisper by this disease.

A guest post from Sarah-Louise Jordan for #May12BlogBomb

Disposable Energy?

I have heard that financial advisors use the term "disposable income" to represent the income left over after taxes and other obligations have been met.  Put simply it represents the income that an individual can spend according to their personal choice.

I was thinking about this concept in relation to the problems people with ME face with their energy budgets.  By "energy" I mean physical energy - the type that can be used to climb stairs for example.

So, I started to think about the concept of "disposable energy",  and how it might represent the  amount of energy that an ME sufferer has available to spend - in a manner of their own choosing.  That is, after all other energy obligations have been met.

Exploring these two ideas, shows some similarities -  both budgets vary enormously throughout the population, and life is undoubtedly easiest for those who have access to the greatest incomes on both accounts.

Surprisingly the upper limits of monetary wealth in today's world would seem to have almost no discernible limit. Considering physical energy is a bit easier, because even the most healthy and fit amongst us, will still have a an absolute limit to the amount of energy that we can expend daily.  That ceiling is determined by our biology.

Normal healthy folk have sufficient energy to attend school or work, and to have a social life on top of this.  They can also exercise to improve their physical fitness. Potentially, they can build up both stamina and strength and so take on challenges such as marathons or mountain ascents.

Of course, there is a limit to what this training can achieve.  Beyond that limit, "over-training syndrome" (1) sets in and the body ceases to get fitter.  At this point, the body starts to break down existing tissues in order to supply the energy demands of the excess physical activity.  This sort of training cannot be sustained.

In the athletic world it is acknowledged that training limits are personal. Successful athletes, at the top of their sport, have a fortuitous combination of ideal biology and the mental determination to train to their full potential. Those of us less physically and mentally fortunate will have lower physical limits - that's just life.

However people with ME can develop a whole new set of restrictions to their physical potential.  No matter what their previous physical prowess, when this illness hits, everything changes.  The rule book gets totally re-written, and the person with ME is left reeling from the implications of their new diminished energy budget.

Suddenly balancing the books takes on a whole new importance.  Previously a unit or two of energy could be frivolously spent without long-term implications, but now everything must be thought through. It is rather like taking a drastic pay cut, or indeed a succession of paycuts as often ME is progressive.

This slashing of one's energy budget is not easy to comprehend when it happens.  In just the same way that the well-to-do find it hard to understand the struggles of those financially less well off, so the healthy amongst us have difficulty comprehending the restrictions of ME.

Healthy friends sometimes fall back on the old mantras that society has taught them about "diet, fresh air and regular exercise" as being the way to improve fitness and stamina. For the person with ME this helps not one bit, because not only does the ability to produce energy for physical activities decline with ME onset, but also the ability to improve functioning through exercise totally disappears.

ME sufferers are therefore left with no other option than to curtail their physical activities to stay below this new biological limit imposed by the disease. Not doing so results in increasing harm. Perhaps the mechanism is similar to "over-training" syndrome in athletes? Who knows?  Perhaps one day research might give us the answers, but until then ME sufferers need to make drastic lifestyle changes.

Returning now to the idea of "disposable energy", and its sister concept of "disposable income", I find that some analogies work well.

First, both financially, and energetically, there must be a basic expenditure that is required on a regular basis simply to sustain life.  Living below these levels leads to long term problems. I won't attempt to put a monetary value on living expenditure, but for energy this represents the amount of energy required to sustain the body in its normal healthy state.

So, let's say this basic required expenditure is 100 units daily. For my discussion I'm also going to assume a normal average income of 300 units per day.  So in my scenario that leaves 200 units that are regarded as "disposable".  These fortunate (imaginary) individuals have some considerable degree of financial and energetic flexibility.  On top of simply surviving, these healthy folk can live life to the full - perhaps sometimes needing to take a rest, but mostly living a life curtailed only by the type of restrictions that society sees as normal.

However when either finances or health become curtailed, a massive impact on life style results.  Curtailing both simultaneously is beyond devastating, and for many ME sufferers this is exactly what happens.  Though that probably needs another whole essay to itself.

So looking now at "disposable energy", the image below shows what happens when my imaginary 300 unit budget gets slashed to half its previous level. Notice that although the over all "income" has dropped to 50% of previous, the "disposable" income is now only 25% of what it had previously been. So 75% of those "personal choice" things need to get dropped!

ME sufferers, of course, don't want to let go of everything they enjoy, so sometimes they will "splash out" and use some of their limited disposable energy on a special event.  As I have explained in earlier posts, the ability to do something once, does not mean it can be done often (2).  Also the resulting "debt" created by an event may potentially have the effect of lowering physical abilities long-term (3).  Living within a tight energy budget is no holiday.

Worse, if ME becomes progressive then increasing restrictions leave less and less flexibility, until finally even living itself takes more resources than are available.  At this point the person starts running into a sort of debt.  Basic body maintenance is sacrificed in order to keep going, and the person with severe ME may become so energy restricted that they are unable to manage even the simplest of self-care tasks.

Once severe illness becomes apparent, people with ME need to depend more and more on others to help them, in order to allow the body to expend as little energy as possible.  The very severest ME patients may even need food to be predigested and fed to them via a tube. Disposable energy at this stage has become non-existent.  Everything is simply about trying to hang on to life, in the hope that a cure is around the corner.

So... Why are medical authorities not more concerned about treating this disease?  Why do they seem content to allocate token amounts funding towards its understanding?

Surely major health organisations around the world should have, at their disposal, sufficient funds for just this sort of health crisis?

Yet still we wait.

Blog post for #May12BlogBomb 2016 . (Link goes live 11am UK time)
More details about #May12BlogBomb here


1. Over Training Syndrome:
2. Well enough to drink coffee:
3 Play Up & Lay Up not Boom & Bust:

Thursday, 5 May 2016

Preparing to "Princess" for Team Princess Hope (Updated with picture)

Over the past couple of years I have watched the "Team Princess" group dress up in costumes ranging from the most elegant to the most outlandish, and I have quietly nurtured the notion that I should someday join them.

And so this year is it! 

Last year Team Princess made a big effort to raise funds for as many UK based ME charities as possible.

This year they will also have a Northern Irish charity on their list, because I have finally taken the plunge, bought my tiara (check it out), and promised to become a "Princess" for Hope 4 ME & Fibro Northern Ireland!

I'm hoping a few other "Hope" friends will join the silliness.

The idea is simple.  Dress up in some "Princess" kit between now and 12th May. Take a photo of yourself in your new found royal glory.

Then share your photo on social media along with the hashtag #TeamPrincess and a link to the all important BT Donate site for Hope 4 ME & Fibro NI.  The more the merrier!

Of course if you don't want to dress up, you could perhaps just donate to the Team Princess Hope page instead.  :)

Watch out because sometime in the next few days I think my blood may just turn blue for a day.


Facebook page of The Princesses and ME:

More info about the Team Princess project :

And just so you don't forget - the link to our "Hope" donation page:


So here it is - me putting on airs and graces for the day!