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."

"Everybody's Changing": Keane sing my M.E. song

Everybody's Changing...

I just wanted to share a song that, in so many ways, sums up my M.E. experience. (Video link to YouTube is at bottom of this post)

It is British band Keane's first hit, that was played everywhere on the radio at the time my very worst M.E. crash of all time seemed to be robbing me of my health, my job, some of my associates (true friends remain, thank the Lord!), my prospects, my ability to get out there and connect and be who I am, my identity, my strength, my hope. This song sang my story!


I had deep faith that Jesus would never abandon me, and can use every circumstance, but being an honest-to-goodness human lass, I had moments when I mourned the active, busy me my illness was stripping away. People all around me had lives moving on, when in my mid forties I was suddenly faced with early retirement, limited strength, mobility and pains that no pill could reach.

People who had only known me recently, or just saw me shuffling along on a "good" day with stick, unable to be up and about for more than an hour or two at a time without untold consequences, didn't really know me at all, I realised with increasing horror. Living in the moment suddenly didn't seem such a tempting option!

When this song came on the radio, a beautiful, emotional song, I would often find myself weeping as it put all I felt into its lyrics:

"...you're aching, you're breaking,
And I can see the pain in your eyes"


and

"...so little time,

try to underestand that I'm

trying to make a move  just to stay in the game,

I try to stay awake and remember my name,

But everybody's changing
And I don't feel the same." (c) Keane


Trying to stay awake and remembering your name is something that will strike a chord with so many of us who live with M.E.


Listening to it now, I'm thankful how songs like this, for eclectic music lovers like me and so many others, become like friends that help to express the deepest joys and agonies in our lives.

For me, I feel God uses everything to minister to us, as he reaches out his hand to us through the darkness.

I hope it blesses you too, today. You're not alone!

Keane: "Everybody's Changing" (from their album "Hopes and Fears") (c) Keane 2003