Friday, 15 May 2015

Guest Post from Holly - Thanks & Thoughts on "Brave"!

Holly first wrote this as a comment beneath the links for this year's May12BlogBomb.  With her permission I have shared her comment as a guest blog: 

Thank you for putting all of this together! 

Thank you to each person who wrote a blog! 

I shared this on my page today and I wanted to pass it along to all these brave warriors who are participating today!

"Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is"

Those words from the song "brave" make me think of the amazing people battling ME. They show me how big their brave is all the time. This community of people inspires me to have courage and speak up. Many people I am familiar with from their online work: the blogs, social media, and online forums that serve as the gathering place for a community of people unable to physically gather together. Others I have come to know well and am lucky to call them my friend. I wish you could know these people and hear their stories. I just think once that happens there is no way we as a society can not take action in the fight against this serious, debilitating illness. Some severely affected by this illness, bravely and painfully type out one letter at a time slowly over days from their beds to write a few sentences to spread awareness and implore others to support much needed research. Many sacrifice precious energy and time to advocate for others. They write government officials, organize events, maintain blogs, and raise funds. I see kindnesses every day in this community. I have certainly been the recipient of many kindnesses and these kindnesses are from people that are in the midst of the fight of their life. Yet, they take time to encourage one another and speak up for one another. It feels like the bond between soldiers fighting the same enemy. We fight for one another. We truly live out the "no man left behind." I am honored to be allowed to participate in this community.

For those battling this illness: I want to take a moment to thank each person that has touched my life in some way. I am proud of your efforts! I see your struggle. I acknowledge your pain but mostly I see the lovely human being that you are. I see you! Yes, this illness is an overwhelming force in your life. However, you as a person have chosen to be an overwhelming force for good in this community. Thank you!

For our allies: Thank you so much for taking time to learn about the illness. It really does mean the world to us when people take time to try and understand. Please help magnify our voice. We have so much to say but sometimes we need healthy allies to be seen out in the world. Many of us are unable to go to meetings, stage protests, show up in the halls of Congress, run a race, pass out fliers, etc. We have some amazing individuals who have pulled off these feats but we need more! A good start is to share a story you have read, a graphic that hit home, a video that opened your eyes. Help others to see us and to hear us. Help us show the world how big our brave is!

#MEawareness #May12 #May12th #May12BlogBomb


Thank you Holly for this lovely comment. xx

Tuesday, 12 May 2015

Guest post from Therese: Happy ME/CFS/Fibro Awareness Day!

It is ME/CFS awareness day, so I would like to tell you a little bit about my personal journey.
I was healthy, just starting out as a Graphic Designer in my first job after art school, looking forward to an adventurous life including travel, love, design and whatever else I could eke out of life. I was hungry, alive and hopeful. Marriage, kids... not on my agenda at that early stage but I would have loved to have got there in the end.

When I was twenty three I came down with a severe virus. I won't bore you with the details, just tell that I have never recovered from it. It wreaked havoc in my body though they are not sure where; possibly my immune system became disordered or over-reactive; maybe my brain is chemically imbalanced or damaged; could be my gut bacteria is completely shot. I react to almost everything I eat and come across in my environment. They are still not sure of what is happening, just that something is.

It has been a hell of a journey and one I would not wish on anyone. There is still very little help to be had for people with these disorders.You have to find your own way; try many ideas; read books, try diets; philosophies; pacing; exercise therapy(god help us!), pray and try not to slit your wrists. Of course you also often have to battle with the disbelief of doctors, family and friends who haven't got a clue what the hell is going on, as you yourself don't either.

Finally, in the The United States, they are finding markers that prove abnormality in the cells. They are considering changing the name from a Syndrome to a Disease (M.E. =Myalgic Encephamyelitis (Old name but preferred by sufferers/ CFS = Chronic Fatigue Syndrome(current name)/ SEID = Systemic Exertion Intolerance Disease - suggested new name). Hopefully this will start a slow avalanche of belief; trials and eventually treatments for people suffering from this disorder.

I believe I am one of the lucky ones. I have found some things that help; diet, pacing myself, resting a lot in between activities, meditation, spiritual beliefs. I am a creative person so I can meander my way around those things when I am up to it. I try to maintain a positive attitude in the midst of this and focus on what I can do. I grieve for the rest, but all things are not possible in even the most healthy life.

My heart goes out to the ones who have ME/CFS so severely that they are bed bound or house bound. They cannot even wash themselves without terrible repercussions. The worst thing that all of us have to deal with is the lack of understanding and belief we face every day of our lives. These people need and deserve support, belief, help, treatments. Many of us don't look sick and this doesn't help our cause.

The next time you hear of someone with ME/CFS or Fibromyalgia (a similar disorder), or any other unseen disease, please try and put yourself in their shoes for a minute. How would you feel if this was your reality? Let our voices be heard; maybe just a hug would help; maybe allow your disbelief to be challenged; maybe reach out a hand to help if it is wanted or needed and if you are able.
And if you are one of the ones that understand, thank you so very much.

Thank you for listening. Therese


#May12BlogBomb List of Links for 2015 

Guest Post from Joan - Open Letter to Irish Minister of Health

Dear Minister Varadkar
In this month of May, which is dedicated to Myalgic Encephalomyelitis (and specifically May 12th which is world M.E. day), I have decided to write to you to make a plea.
My foster son is 15 years old. He has been with me since the age of 4 and is as much 'mine' as if he was born to me. Until the age of 12 he was a happy, fit, outgoing, healthy, sporty young lad who loved life, loved his friends, loved school (except for the homework!) and loved his swimming and sports.
At the age of 12 he was struck down with Epstein Barr, chickenpox and a viral pneumonia - all in the space of a few weeks. He struggled for five weeks trying desperately to be well enough to get back to school and failing miserably every time. He eventually made a recovery of sorts and made it back to school in time to finish off his final year in Primary School. He entered into the summer with the full excitement of any young lad, looking forward to secondary school and becoming 'grown up.' 
After his first couple of weeks in school in Sept 2012 he picked up another virus that was going around the school. He became extremely ill and was in A & E several times. The simple fact is that, since then, he has never recovered. His diagnosis at the time was post viral illness, which over time moved to Chronic Fatigue Syndrome and which eventually became ME. He was diagnosed eventually by a renowned Paediatric ME specialist in the UK - Dr. Nigel Speight. There are NO specialists here in Ireland in this condition and patients and their carers are left trawling through the internet and support forums trying to find something, anything that can help. 
He has a range of very complicated symptoms from his ME. the most obvious of which was a complete bowel shut down. As a result he was hospitalised several times over the first couple of years. Eventually he was trained in how to manage his own bowel evacuations at home. His other symptoms include overall bone and muscle pain, painful muscle spasms, tinnitus, ongoing digestive problems, noise and light sensitivity, temperature dysregulation, disrupted circadian rhythm, chronic and debilitatating inability to create energy, post extertional exhaustion and increase in symptoms, cognitive difficulties, intermittent dyslexia, balance problems, short term memory problems, deteriorating eyesight, etc etc etc. There are almost too many to mention. 
He has never really managed to get back to school, save for an odd day here and there. The last time he was in school was in September 2014.  
My young lad is not just my responsibility. He is the responsibility of the State as he is in foster care and I believe that the State are letting him down by not providing us with the expertise to manage this condition. We, like many, many others, are left to trundle along, doing our own research and trying to get help from an international community. During his 'journey' with doctors and hospitals here, it was actually recommended at one point that he be started in Prozac, despite the fact that he had no signs of depression whatsoever. The reason given to me for this recommendation is that 'there was nothing else they could do but this'.  Imagine! Putting a 12 year old child on Prozac for a condition that has a biological origin! How dangerous and appalling is that? These are the kind of things that are happening to the 12000+ ME patients in Ireland on a daily basis and they are the result of neglect and failure to establish even the barest minimum of one  clinic and one consultant to manage this condition and learn about the latest international research.  
I am attending the 9th annual Invest in M.E. Conference in Westminister, London at the end of this month so that I might keep myself up to date on the most current international bio research on this illness. These are the things carers and patients have to do. We have to chase down the information ourselves. We do this while all the time caring for our loved ones. In my case I have had to reduce my working hours from 39 hours to 11 hours per week over the last three years. Poverty soon bites at your door when you have such a dramatic loss of income. 
I am pleading with you to consider the establishment of a clinic with a properly trained M.E. Consultant in situ. Someone who understands the pathology of this illness and who has a genuine interest in the exciting research emerging from the UK and the USA. Even if this only started at one day per week - it would be somewhere to start. There is expertise out there. Patients and patient organisations can help you in this regard. Both the Irish ME Trust and the Irish ME/Cfs Association have a wealth of expertise in this regard and perhaps you could make contact with them to set up a meeting? I would be happy to help with this.
Finally, as May 12th is International ME Awareness Day, could you and your colleagues please display blue ribbons? The Mansion House will be lit up blue on that day to support those with M.E. You can make the ribbons yourself or contact the Irish ME/CFS Association. 
Best regards
Joan Byrne

#May12BlogBomb 2015 Link List

This page collated on 12th May 2015 with a few extra links being added later in the week.

Details about this event can be found here:
Calling all Bloggers

#May12BlogBomb Links:

My Posts:

Just ME: Well enough to drink coffee?

My Guest post on Why Campaign for Awareness?

Guest Posts on Just ME:

Just ME: Guest Post from Karyn - A Gift for You

Just ME: Guest post by MerelyExisting is ME - We Are Warriors.

Just ME: Guest Post from Joan - Open Letter to Irish Minister of Health

Just ME: Guest post from Therese: Happy ME/CFS/Fibro Awareness Day!

Just ME: Guest Post from Holly - Thanks & Thoughts on "Brave"!

Posts on Independent Blogs:

1_LoveLife: Watching Carys #ME #CFS #EDS

A Life Less Physical: Fibromyalgia Awareness Day + Fibromyalgia

A Life Within an Illness: A Day In My Life...May 12th 2015

Angelsong: The Onset of ME

A Path Through the Valley: ME / Depression 

A Rainbow at Night: ME vs. CFS vs. SEID Information & Advocacy Chart

Artifacts of ME: Comorbidity: ME, MS and Exile in Silicon Valley

Being a Mummy with ME: 1 Weekend 2 Perspectives

Brainless Blogger: May12BlogBomb #Fibromyalgia Awareness Day post

Chase the Dream: Fibromyalgia ME/CFS Awareness Day #May12BlogBomb

Chronic Journey: Finding Peace with Chronic Illness

Chumble Fuzzly: ME/CFS, Disability & Video Games For International ME Awareness Day 12/05/15

Confessions of an expat entrepreneur: A few words on Chronic Fatigue Awareness Day

Crafting with M.E: Princess for a day, reality hits!

Crazy Purple Mama: Hopes for a Future without ME

Elizabeth Turp Counselling and Training: How Do you Cope?

Experiment No 1: Picture of a Crash


Fibroflicka med Myalgisk Encefalomyelit: International ME & Fibromyalgia Awareness Day

Fibro Warriors - Living Life: Don't Just Look ~ See!

Freckles and All: Why ME / Chronic Fatigue Syndrome Awareness Is Important

Get up and Go Guru: My Vision For A Healthy Future

Grace is Sufficient: Would you have enough compassion to listen to one more story of an invisible illness?

Henry Anderson's Blog: A short blog about my experiences of ME and cancer

Jac and ME: So what's it all about?

Jan's Place: I gave a powerpoint presentation regarding ME/CFS (Part 1) (Part 2)

John Molot MD: May 12th is Awareness Day

JPC101:M.E. Awareness Day 2015 #May12BlogBomb

Katie Cupcake: My Story - #May12BlogBomb

Kealie Mardell: May 12th 2015: International M.E/CFS and Fibromyalgia Awareness Day

Kerra Melissa's Awareness: #May12BlogBomb

Laura's Pen: ME Awareness: If we were cured tomorrow what would we do

Life as we know it: #May12BlogBomb Event

How to Deal with ME: 1 Weekend 2 Perspectives

It's only ME, it's not my mind: Today: The Personal and the Political

Jenny Helen: My Spoonie Life: ME Awareness

Jennifer's CFS Journey: If I woke up tomorrow, free of CFS…

Leannae's World: ME Awareness Welcome to the May 12th Blog!

ME Advocacy: Chomps Chillies for ME (video)

ME Again (Artist Showcase): Sandra Lock

ME Again (Artist Showcase): Debbie Deboo

ME/CFS Ghost: Why we Need to tell our Stories

ME/CFS Self-Help Guru: #May12BlogBomb: A Future without ME/CFS

Melanie Schickedanz on Huffington Post Blog:
Am 12. Mai ist internationaler ME-Tag: Geschichte einer untersch├Ątzten Krankheit (post in German)

ME Lulu's Legacy: May 12th M.E. Awareness Day – Just Another Year Older #May12BlogBomb

ME, Michael & Me: #May12BlogBomb A Vision To The Future

me, mine and other bits: I just can’t, I just can’t, I just can’t control my life

Mum's Net: Guest post: M.E. Awareness Week: "No, I'm not 'just tired'"

Mythic Pictures: The mystery image revealed!

Nourishing Joanna: What Does ME feel Like?

Paula Knight: Three Little Words / #MEawareness

Paul Tomkins: We Are Death, Warmed Up

Occupy CFS: Very Very Aware

Raising awareness and finding a cure. M.E - The hidden illness: WHAT IS M.E?

Sarah at Saje: ME awareness day 2015: Acceptance

SaYaHA: Me, Myself & MEcfs: ME Awareness (Post in Japanese)
                and #May12 #MEAwareness Day Report from Japan! (Post in English)

Sensitive Girl. Travels: “A Vision Of The Future”

Shelli Profitt Howells: Happy ME/CFS Awareness Day!

Sleeping on the Edge of Sleep: A History of ME/CFS and Fibromyalgia: Does It Run in the Family?


The Chronic Ills of MookPixie: No Charge

The Sisters Cafe: Chronic Fatigue Syndrome--7 Things I am Tired of

Thrift O'Clock: About M.E. // #May12BlogBomb

TheMarkHurstBlog: The ExhausTing Tings - That's Not My Name

Tips for ME: ME Awareness Blog Bomb + The Princess & ME, A Paradoxical Curse

Wheeling Along: M.E. Awareness Day: What is in a name?

Virgin Unite: M.E Awareness Day: The day Richard Branson put me to sleep


This is the second year I have collated links shared with the #May12BlogBomb tag.
These are the blogs from the 2014 #May12BlogBomb

Thank- you to everybody who has participated. xx

Guest post by MerelyExisting is ME - We Are Warriors.

We Are Warriors.

December 2013 is when it all REALLY changed… full on, for the worse. And I was welcomed into the world of ME or Myalgic Encephalomyelitis (or Chronic Fatigue Syndrome CFS or Systemic Exertion Intolerance Disease SEID). Call it what you will it doesn’t change the living hell that this is. But we aren’t really able to live though, we just exist is various states of suffering. And boy do we suffer… so so many symptoms, either ALL at the same time or in clusters, every second, minute, hour of the day, 24 hours a day, 7 days a week, 365 days a year, 52 weeks of the year.

Some fortunate souls may find that things improve and living returns, but for many the months and years continue into decades. Dreadful isn’t it. And yes it is. Life becomes a daily battle for survival, a hierarchy of needs so to speak. Wake up, how do you feel, what hurts, what works, can you move, can you think, can you get up, can you drink, can you eat, can you take medication, can you get to the bathroom, can you wash, can you get dressed, can you leave the house, can you get food, can you answer phone calls, can you deal with letters, can you pay your bills, can you do your laundry, do you have anyone to help you, do you see people, what about getting to appointments, do others understand, and on and on. And what if you can’t do these things, or you live on your own, or you have families to care for, what then?

So, do you see that just to get through the day we have to focus ALL and ANY energy into just the very basics of life, which are things we wouldn’t have even thought about once, let alone twice, before when we were healthy. And oh, how we ache to do life’s normal things like shopping, socialising, getting out of the house, go on a trip, walk, dance, enjoy life, being able to just do stuff, whatever that is, at a moment’s notice without any consequence or concern.

But do you know what? Yes it truly is a living hell, but what I have found and what I see in others, is that we all have this incredible, powerful inner strength, a united understanding, we are warriors and we will fight to get through every day in the hope that one day, just one day we will be one of the fortunate souls.

So please help further the fight for support, awareness, understanding and research for ME… we want to start living again, not just existing.

#May12BlogBomb List of Links for 2015 

Guest post by MerelyExisting is ME @tweetsforMECFS

Well enough to drink coffee?

Often people find it hard to understand why ME folk can do something once but not repeatedly.  

I used to think that way too.

Before I was ill, I remember hearing a comment about a colleague who was off work on long-term sick leave:

Some-one said, "If he's well enough to be out drinking coffee, he should be back in work!"

I'm spared the memory of my reply because I was dashing out to teach a class at the time, but I remember thinking that he was obviously on the mend and would no doubt be back to work in a day or two.

I would think differently now, because I know that some illness recoveries are not quite that simple. Sometimes recovery stalls.

We are so used to thinking of some-one as either ill and in bed or recovered and at work, that we have difficulty understanding the long-term limbo of chronic illness.

This is where an analogy to a bank balance comes in handy.

We are all familiar with budgeting our finances and with the concept of "saving up" for something special.  The higher our income of course the more often we can indulge ourselves.

So lets imagine looking in at a posh restaurant. Can we tell who, amongst the diners, eat here often, and who has saved for months for their meal tonight?  Hopefully not - hopefully all diners are enjoying their dinner with equal delight!

So, just as observing a single monetary splash does not tell us everything about an individual's financial state, neither does observing a single moment in time tell us much about an ME patient's actual level of health.

Of course, for those with no flexibility there won't be this confusion - because quite simply these folk won't be eating out at all - every penny (or unit of energy) being taken up with simple survival!

Yet, for those of us with ME who are not fully "severe", we might sometimes be seen out and about, smiling, laughing and looking apparently "well".

At this point please remember, that it is not possible to tell from this exactly how "well" we are! That hour of freedom might have come on credit, and at a high interest rate.  It might therefore have consequences reaching forwards over the next days, weeks, or perhaps months.

Adrenalin, and "feel good" hormones are amazing at hiding the true impact at the time!

So, a day out can be bit like spending on a variable budget - with a credit option that doesn't tell you when you start dipping into it, and an interest rate that is only declared a couple of days after the big spend!

Doing something with this sort of arrangement, means that you can't risk repeating it too often, and certainly not on a day to day basis.

Yet, to get out once in a while, and do normal things is so very precious. For that reason, sometimes, we'll just do it anyway.

So if you see one of us having a coffee somewhere and looking well, it could be that we are on a recovery path... but more likely, we are just managing things in order to splash out for a moment!

And were one of us to suddenly really recover?

Well our friends wouldn't be long knowing it, because in the same way that money is easily spent, so health and well-being is hard to hold back.

I think I'd start with my garden....


This post was written for ME Awareness and #May12BlogBomb - 2015 Link List here

Further Information:

The Spoon Theory
-  is an idea that equates spoons to units of energy.

Pacing  - is a technique of attempting to stay within the energy constraints of our condition, and so avoiding the "high interest" consequences of over-doing things on a day out.  Below are links to some posts I've written on Pacing:
Do you STOP soon enough? March 2015
Pacing and Unpredictable Events Sept 2014
"Play-Up & Lay-Up" not "Boom & Bust" Sept 2014
The Exercise Catch 22! Jul 2014
ME Awareness - Why NOT Exercise? May 2014

Guest post from Karyn: A Gift for You

A gift for you for International ME/CFS Awareness Day.

I know Awareness Day can be quite an emotional day for sufferers, so I’d like to offer everyone a small gift. It’s an unusual gift – so bear with me. It’s a piece of fishing line.
In the book “Operating Instructions” Anne Lamott tells a story about some autistic children who were so severely withdrawn that if you stood them up, they’d just fall over. But the people working with them discovered that if they ran a rope from one end of the room to the other and stood the kids up, holding on to the rope, they could walk across to the other side of the room. Over a period of time they gradually put up thinner and thinner pieces of rope, then string, then eventually some fine, almost invisible, fishing line. And the kids could still walk across the room as long as they were holding on to it.
But then (and this is what blows my mind about the story) the adults cut the fishing line into small pieces, and handed a piece to each child. And still the autistic children could get themselves across the room!
And so I want to give each of you a tiny piece of fishing line. So that you may have faith that, no matter how impossible the task seems, you can believe that one day we will all get to the other side of these diseases, have our independence back, and our lives back. As you hold that fishing line I want you also to know that it is a symbol of our connectedness to each other. We each hold a piece of that fishing line, we understand each other’s suffering, and we are all here for each other. I hope and pray that that little piece of fishing line can be your guidance, your support, your safety net, your strength, and your way forward. Love you all.

by Karyn Crimmin

Written for #May12th Awareness Day &  #May12BlogBomb
#May12BlogBomb List of Links for 2015