Friday, 12 May 2017

Why? Just Why?

It's one thing to be told you have a disease that is not yet fully understood, while doctors do their best to seek out treatments.  

It is quite another thing to be told your life-altering illness is only a self-inflicted burn-out, and that you just need to take more exercise and think more positively.  I joke not.  Many patients report this type of attitude from their medical professionals.


The problem is this: NICE guidelines recommend Graded Exercise Therapy & Cognitive Behaviour Therapy as the best available treatments for "CFS/ME".  

Some doctors interpret such advice as: "Get a move on!" and "Stop dwelling on things!"  

Do these doctors not realise that ME can be serious? Indeed, so serious that it can render the sufferer helpless and in a an enduring state of physical misery? 

Do these doctors not recognise that exertion can make the health of fragile patients plummet? 

Do they not notice?

If not, why not?  


The ME community has been saying for years that exertion harms their health - sometimes permanently.  Yet still the NICE recommendation for exercise remains. 

And the newly ill are still given advice that could cause them long term disability.  

And time goes on and NICE guidelines are still not changed.

We are told the guidelines will be looked at in 2017 to see if they need to be reviewed, but there appears to be no urgency to this process.  


We also have no reassurance that the experts being consulted on the decision are cognisant of the harms of exercise for ME.  Are these reviewers taking new research seriously? Are they prepared to ditch evidence from trials that fail to stand up to scientific scrutiny? 

And if so, why are changes happening so slowly? 

Now, here we are in the month of May again.  Still trying to "raise awareness", still blogging, still protesting, and still campaigning.  


Yet little has changed for patients in consulting rooms across the country.


Why is that?  Why?  Just Why?  

***


PS I read somewhere recently: If you want to change a person's established view point, that reasoned arguments and referenced literature have less effect than simple questions.  So I have chosen not to expand this post with detail, but simply to ask the question "Why?".

My post for ME Awareness Day 2017 & #May12BlogBomb

Other posts can be viewed on the Link List for #May12BlogBomb 2017

Link List for #May12BlogBomb 2017


#May12BlogBomb 

A new collation of blog posts written for May 12th Awareness Day 2017.  

If you would like to submit a blogpost to the list? Please follow this link.

If you want to know more on the the history of May 12th as Awareness Day?  See this post from ME Advocacy.


If you are sharing blogposts on social media, please use the tag #May12BlogBomb - the tag to amplify the voice of all May Awareness Bloggers!


My Awareness Post:

Just ME: Why? Just Why?


Guest Posts on Just ME:

Just ME: Guest Post from Merely Existing is ME - Onwards


Just ME: Guest Post by Wendy: Courage


Posts on Independent Blogs: 

Chronically Siobhan: Heartbroken

Crazypurplemama: It's all about ME 

February Stars: Why we need an awareness month for Fibromyalgia, Lyme disease & ME/CFS

February Stars: 5 things I wish people knew about Fibromyalgia & ME/CFS

Huffington Post Melanie Schickedanz: "12. Mai - Internationaler Tag des Chronischen Erschöpfungssyndroms" (German)

Laura's Pen: ME Awareness Day - A comic, a poem, a video diary and a word cloud

Lennae's World: Walk for ME! 

Lennae's World: ME Awareness 2017

Liebjabberings: Celebrate May 12 International ME/CFS AWARENESS Day

Lightening the Shadow: Darla's BedFest Submission: Memoir Excerpt

Little Wings: MEme is ready for the Dublin Protest

Living with ME - My husbands perspective

ME/CFS Self-Help Guru: What Living Well with ME/CFS Really Means

My A-Z of M.E. - May 2017 awareness month


Not Just Tired: Simple ways to raise awareness of ME/CFS

StopGET: Missing More, the exercise broke me


The Martian Princess Chronicles: 3 Reasons Why I Am Grateful To My Fibromyalgia

This Spoonie Speaks: EDS Awareness Month Blog Challenge

Tips for ME: What Would Florence Do?

Verbena Days: ME Awareness Month



Previous #May12BlogBomb Link Lists can be found on these pages:


2016 - 2015 - 2014 


Thank you to all the bloggers past and present who have contributed to this endeavour.  




Guest Post from Merely Existing is ME: Onwards

Guest post by MerelyExisting is ME for #May12BlogBomb 2017

 @tweetsforMECFS

Previous #May12BlogBomb posts:
2016 I wish...
2015 We Are Warriors 



Onwards towards new realities


Firstly I would like to say a big hello to everyone as I’ve been too unwell to manage any attempts at social media for the best part of a year, but I really wanted to make contact and post (a brief) something for this year’s ME Awareness campaign.

So what’s happening? I do feel so out of touch with everyone and everything…
For me its three and a half years now since my world turned upside down from ME/CFS and I honestly had no idea just how unwell and incapacitated it is possible to feel, BUT with very aggressive rest and extreme pacing I am sometimes able to manage brief spells of feeling slightly less deathly… HOORAH !

Prior to December 2013 I was working full-time in healthcare and now I am about to enter ill-health retirement almost two decades too early, which is not something I ever imagined happening.

I don’t know what the future holds but I am learning a new reality, to take and deal with each minute, hour, day as it comes, and I keep hope for those moments when symptoms ease a little.

Myalgic Encephalomyelitis is REAL, its PHYSICAL and it destroys lives so please help in raising awareness and support… so that we can start living again and not just existing.

#May12BlogBomb 2017

MerelyExisting is ME @tweetsforMECFS 

Guest post by Wendy: Courage

Guest post from Wendy for #May12BlogBomb 2017 on courage and how it relates to having a long term debilitating illness:


Courage


Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got?  Cowardly Lion Monologue on the Wizard of OZ

Courage is the ability to do something that frightens one, as in "she called on all her courage to face the ordeal."  Or strength in the face of pain or grief, as in "he fought his illness with great courage."

mean mental or moral strength to resist opposition, danger, or hardship.
Courage implies firmness of mind and will in the face of danger or extreme difficulty. “the courage to support unpopular causes”
Mettle suggests an ingrained capacity for meeting strain or difficulty with fortitude and resilience. “a challenge that will test your mettle”
Spirit also suggests a quality of temperament enabling one to hold one's own or keep up one's morale when opposed or threatened. “her spirit was unbroken by failure”
Resolution stresses firm determination to achieve one's ends. the resolution of pioneer women”
Tenacity gives birth to stubborn persistence and unwillingness to admit defeat. “held to their beliefs with great tenacity”

You may not always have a comfortable life and you will not always be able to solve all of the world's problems at once but don't ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.  {Michelle Obama}

When you live with chronic illness, every aspect of life takes on a new dimension. Your daily decisions and choices are examined through a new lens, and you often find yourself carefully weighing the ramifications and possible outcomes of your choices. But, wait, wasn't this the way it always was? This is something all intelligent and responsible adults do?  However, living with Myalgic Encephalomyelitis broadens the scope of that decision making process. The question isn't only how will this decision or choice affect you, but also, how will it affect your illness which in turn affects you and the choices and decisions you continually make.

“Catastrophes create heroes, people who know how to deal with trouble. They come in all shapes and sizes to take the lead: a medical worker, a lottery winner, a neighbor, bystanders, a priest, a child”

The notion of choice occurs at many levels. We have little or no choice about the thoughts which randomly occur to us. We do have choice about how we choose to act, that is, what we do about the thoughts. We also have choice about how we feel. Not choice about the feeling we have now - that is the result of past choices, but about the feeling we have next. We can be sad, and choose happiness, angry and choose love, etc. There is not any "right" way to "be," just possible ways - each with consequences. From a purely pragmatic perspective - evaluate the choices you have made, see what the effects have been. What is it that you want? What choices are you prepared to make to support those ideals ? Some things achieve what we want, others don't.

“Success is not final, failure is not fatal: it is the courage to continue that counts”.  {Winston Churchill}

Living with a complex chronic illness such as M.E. is a search for quality of life. One needs to be well informed about their illness in order to manage their physical symptoms as best one can. However, one also needs to learn to live with a certain amount of ambiguity and uncertainty. Striving for a balance between work and play, rest and activity, relationships and solitude, and grief and joy, the challenge Myalgic Encephalomyelitis means we must come to accept our limitations and appreciate our gifts.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” {Nelson Mandela}

Obviously, this is a demanding aspect of living with chronic illness. It's also the measure of your courage. Living with illness affords ample opportunity to be courageous in living your life to the best of your ability. Because when limitations and diminished control over the effects of illness are part of your daily life, your choices and decisions become the stuff from which courage emerges. The fact is, if you're living with Myalgic Encephalomyelitis you are courageous. In the process of meeting life's challenges, you have learned and are continuing to learn how to meet your fears and move beyond them. 

“There Is Courage In Being Vulnerable.  Courage is borne out of vulnerability, not strength.It is when we are at our weakest we find our strength through courage. 

Being real, being raw, being authentic, laying bare your flaws and discovering your voice can have massive power. Standing in who you are, owning your strengths and weaknesses and accepting who you are is  amazingly powerful. Most people have been raised to believe that vulnerability equals weakness. But it doesn’t. There is incredible strength and courage in vulnerability. We must live in the space of vulnerability. Vulnerability is not just about fear and grief and disappointment it is indeed the birth place of everything we are hungry for : joy, creativity, faith, love and innovation.

“Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable,but they’re never weakness.”  Bren√© Brown,

This is an inspiration for all of us around the world. We can not be invisible any longer without risking our lives. We need proper care and medical treatment, funding for biomedical research, education for those in the medical profession who need to learn more in order to treat us but more importantly we need acceptance and understanding in our communities because our disease is so complex one can only understand it by contracting it themselves.  We need to show that this can happen to anyone.