M.E.'s darkest moments: I am worn out from groaning!

Llewellyn King: ME/CFS: Into 2012 without Cure or Care

The link above is a wonderful article exposing the reality of M.E.
I confess I wept on reading the quote from the lady who, speaking about her worst moments with M.E. when bedridden and housebound completely, wrote in an email to Mr King:

"I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat there, not once backing me. That was more hurt than I can carry for another year. I pray every night, 'Now I lay me down to sleep and please, Lord, take me before I wake.' ”

I reckon we have all been to that precipice point when housebound and bedridden. I recall turning my face to the wall, as best as I could, when I could hardly roll over in bed, one time when my M.E. was at its very worst and sobbing "My life is OVER!" Even with deep faith and conviction that God is in charge, exhaustion brings agonising wilderness moments when we feel nothing but alone. Just like the Psalms constantly cry out from the darkest corners of agony, it's 100% natural as children of faith, we grieve for the full potential we see sucked out of us by devastating weakening illness. Even if, in our heart of hearts we're convinced our lives are valuable whatever our disability, our emotions often tell a bleaker tale.

Could we claim to be fully human if  such moments were alien to our experience? We shouldn't feel ashamed of our tears and rage, or count it as weakness. We just need to support one another through the darkest hours. If we have a faith, we need to embrace the truth that sometimes we need resources outside our own limited striving, to lift us gently up from the pit of despair and to hold us cradled when the last spoon of strength we have is utterly spent, till the worst storms pass and even though so sick we can look from a new perspective.


"Be merciful to me,Lord, for I am faint; O Lord, heal me, for my bones are in agony
My soul is in anguish. How long, O LORD, how long?
I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. 
My eyes grow weak with sorrow" (Psalm 6 verses 2, 3, 6 & 7)

I wish I'd a pound for every time since M.E. struck me down that these words express what I sometimes feel. We know we're not alone feeling these emotions. They've been part of being alive since God was a lad!

What a travesty and disgrace it seems that such heartfelt pleas as Mr King's are still so needed after all this time as a New Year rallying call. Haven't we been campaigning and raising awareness long enough for the world, the medical establishment, the governments, the public, the researchers to take for granted the urgent need for progress right now to cure and care?


But we know different and I'm so grateful for Mr King's articulate call to action. We need to whisper it, croak it, shout it, demonstrate it till truth and justice and healing dawn at last. Personally, I believe God's big enough, loving enough and patient enough to carry us till that day. Even if you are convinced that God is just wish-fulfilment fairytale bunkum, there's still a reason to hang on in there for your own sake and the sake of spoonie friends everywhere, to help make the world sit up and take notice of what's right and what's worth fighting for.


As Llewellyn King writes so well:


"A cure this year is unlikely, but better understanding can start today. Now...Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly."

Please stop by and help give M.E. sufferers the chance of a future

You're busy? You don't have a lot of energy "spoons" to spare? 
This only takes a few moments.


Please sign this petition if you feel you can.


It calls for funding into bio-medical research into M.E.  
Not wasting funds on the psychological lobby or big pharmaceutical conglomerates with their own agendas.

The definition of M.E. as a neurological illness as classified by the World Health Organisation is widely acknowledged. However, why is the funding in the UK given to the psychiatric lobby and NOT into clinical or bio-medical research? Is it because this area is monopolised by those with particular vested interests?


Here is the petition: it will take a couple of minutes at most to sign. You can do this from the site itself, or simply log in from Facebook or Twitter.


38 Degrees Petition calling for Bio-Medical Research into M.E.

Here is what I wrote as my comment as I signed:

'M.E. is physically crushing to the lives of children, young people with all their lives in front of them, and hardworking men and women who suddenly have the carpet of health, life and livelihoods pulled out from under them in the misdst of their active plans, joys and dreams. Please don't crush us further by the outrage of calling this merely psychological. Bio-medical research is the only way to unlock this prison so please let this be the path taken in future.'

Please do what you're able and bless you for taking the time. 

 

Promises, promises...

The ME/CFS Worldwide Patient Alliance (MCWPA) has just posted this cartoon to ask:

Mr Obama - do you remember what you promised us?

Sadly, apart from the odd mutter in parliament when pressed about ME/CFS issues, the UK Coalition Government has so far not even bothered to make any such promise to look into the issue. No promise to focus funding for decades-overdue research into the devastating illness tht costs so many citizens worldwide their jobs, their health and their whole quality of life.

Please don't make empty promises.


We need you to deliver. Now.

Voice of the Voiceless "Scum"

Hear nowt...

See nowt...

Say nowt...erm, not likely!

Guardian article about the fight for the genuinely disabled



This article (link above) highlights how one woman is making a difference. Like disabled and disabilty rights campaigning bloggers everywhere, she is helping to enable the voice of the genuinely disabled to get across, in the face of the latest panic-driven welfare reforms.

We all know reform is needed. The fear is that the "one size fits all" approach, where the form-fillers of ATOS (to whom inadequately devised new "capability assessments" have been farmed out by the Department of Work and Pensions), will deem everyone fit for work just in order to tick boxes and meet targets.

Like most of us, I've been through rigorous DWP independent disability assessments before, when the outcome was always that in no way was my health adequate to return to work, even part-time. A pen-pusher saying "you're well" has never yet been a cure for systemic disabling illnesses like M.E.!

I really admire how this disability campaigner,  Kaliya Franklin boldly calls her own website:



Benefit Scrounging Scum


This is the label the media has blithely affixed to her, to me, to you and all those forced out of their jobs and onto welfare or early pensions by genuine illness, lumping us in the same bracket as malingerers and cheats to whom we bear no resemblance at all.

For many of us who are ill, the current welfare reforms that target all alike, fill us with dread, despair and unwarranted shame. Jobs are hard to come by even for the young and fit. Those of us who might manage to muddle through for a day or two, would then be so crashed and unwell that we would be worse off than ever before.

I know. I've been there. I forced myself back to work so many times until I could no longer walk, think or speak with M.E. 

Claiming welfare is no glamorous "lifestyle choice". It's a last resort. It's a lifeline that we hate to have to ask for, and one we never in our wildest nightmares imagined we would have to rely on, for a day, let alone for an extended period.
 

I, like thousands of others, earned a decent wage in a demanding, satisfying professional career and long studied-for calling, after a lifetime's apprenticeship of experiences, work paid and unpaid, and grafting.

I paid my taxes (I never claimed for half I could have in my job!) which I still pay, of course, living greenly, cycling and walking, working on my days off whenever the phone or doorbell rang, going the extra mile without a second thought (as everyone does in caring professions and  so many others), always called "hard-working", relied on by many with a full diary of work and social commitments and connections.


Now, through no choice of my own, here I am. Through some unseen virus, picked up through hard and risky work in foreign parts, (which people wrongly thought heroic, or crazy at the time, people who filled up my "spare" time for years afterwards wanting to hear all about my work, at their fundraisers and meetings!) I'm suddenly counted by those who don't even know me or my blemishless history of conscientious citizenship, as scum. Everyone and their dog can now say whatever they like about me and wish me to hell in a leaky handcart as a contemptible "benefit bludger."


We may be too sick to march or protest as we might have when well, as we gladly did back then on behalf of those more vulnerable people for whom we once gladly spent our time and efforts, and will again if able. (Speed that day!).


But there are ways now, by internet, for instance, by which vulnerable voices can still be heard. Some days I'm too sick to read a blog, let alone write one, but when I can, I try to do my part.


I lend my support, such as it is, to disability rights campaigners like Kaliya Franklin in this article, and her fellow blogging colleagues, like those who blog as


The Broken of Britain


and I appreciate The Guardian (for once!) for giving the unpopular hoarse voice of we voiceless "scum" a balanced airing for once, without all the devastating vitriol and hype.