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Breakthrough Prayer 28th May

May 21st 2011
We hold everyone who is suffering with ME and everyone involved with them in the Heart of Love today.
We ask for miracles we ask for help we ask for hope We ask that each person will receive their own special breakthrough for their own specific circumstances as we pray in trust and power the Breakthrough prayer.

We welcome all newcomers to the breakthrough prayer circle and open our hearts in prayer to embrace each other and pray in the oneness of love.

Breakthrough Prayer 9pm BST Saturday 21st May 2011

May 21st 2011
Tonight we pray for all people who have lost a pet or a friend or anyone who has supported them, particularly through their illness. May they find hope and spiritual comfort to ease their burden of grief and loss.
I gave my son for you
 I cried those tears of pain with him
 I held him gently in my arms
 I loved him back to life
 For I am the one who loves
 I love you all
 I love you always
 For I am the one who loves
 in spite of all the pain.

How do you survive ?

The recent death of our dog, our comrade this last eleven years , has stripped bare the  isolation we endure. How will we cope ? 

Invisible, mostly, the pulverizing isolation that  sufferers and carers experience in Severe ME  is compounded by being virtually incomprehensible. Who can possibly understand  this  being separated,this  being  absolutely cut-off  from even the simplest ordinary things ?

My wife can be in a room but not be able to access anything , because of the disability on all levels that Severe ME  brings. Into that vast gap our dog brought his furry nose to be stroked and his  ears, so expressive, to be tickled; it made all the difference to my wife's quality of life.

The  carer's isolation is also  fathomless.  Who knows what  suffering they endure,  through the almost inevitable, decades-long process ,  of becoming cut off from everybody and almost everything  ?

 Through people just  not understanding the dreadful impact of Severe ME and why the carer cannot see them.

Who can describe the hurt ,  the resentment , the persecution that  carer's  experience, as a result of  putting the person with Severe  ME first ?  

The continual  blaming they endure, whether overt or covert.

Who knows their immense stress ?

Who has a clue what it is like to live in such material and emotional  poverty ?

Very rarely are the sufferer's or carer's needs seen or met in Severe ME.

Into that astronomical space, our little dog  took me out for walks. 

He gave us a purpose, beyond bone-crushing  survival. His utter  delight in life, his acceptance and unconditional love,  brought limitless joy and taught us well. No wonder a tear is running down my cheek.

Ask any pet owner, the loss of a beloved  animal is a terrible thing,  comparable to human loss. 

The loss of Amos , in our solitary  situation, is incomprehensibly compounded by the illness.Not only is the physical stress likely to make my wife much much worse, a necessary support mechanism has been torn up by its roots , leaving us gasping.

Amidst  the wreckage, Linda and I hold onto each other and try to work out what to do now. 

What do you do, after the necessary grief work is done,  when you can't afford to buy another dog ? When you can't really afford the pet insurance, the vaccinations, the bowls, the toys, the treats ? The endless ongoing 
costs ?

Yet how on earth do you survive ?

There  is such a need for a Dogs for People with ME service; that is what I know now.

Amos RIP

Can grief be this huge ? I had no idea. Tears are falling onto my knees as I type, the screen blurry. How hard it was to get up this early morning and know that our beloved Amos is dead.

As we both held him , through the long hours of his dying last night , I seethed inside with rage. Linda never was able to take Amos for a walk; not once in the entire eleven years he lived with us. Linda never knew those places only a dog can show you. The wintry dark nights, with things banging in the wind, the early morning sun on a window pane, the mist rising over the fields, the byways and pathways behind Tesco.

The golden sands, only four miles away; in the forthcoming  film "Voices from the Shadows", about the lives of people with Severe ME;  Amos lives forever, on that beach with me.

No more will he take me walking.

No more will he cuddle his nose into Linda's paralyzed hand when she awakes.

Amos knows more than anyone about Severe ME. In his own way he payed the price,but  he was uniquely loved, for in all those eleven years of raging, horrible sickness, he was always by our side; every moment of every day and night.

What an utter emptiness and silence his death leaves.He broke the isolation . How will we cope ?

I cannot imagine how much  more  ill Linda is going to be today, as a result of holding and comforting  Amos. She was in complete and  total physical agony all night.

I will cuddle and hold her; knowing that in in the middle of us,  Amos lies as always;  alive in spirit. Love, so powerful,  never dies.

Breakthrough Prayer 9pm GMT Saturday 14th May 2011

May 14th 2011
Today we continue to pray for all those who are struggling.

The body of Christ
 holds every name
 holds every moment's pain
 represents eternity
 before our very eyes
 if you could dissect it,
 hidden away;
 in a tiny molecule
 or perhaps an ephemeral electron,
 you would see yourself
 and feel with absolute certainty
 that He had touched you
 He had held you
 He had loved you
 just as you are
 right now
 and you would know
 that this
 is True.
Linda Crowhurst

Breakthrough Prayer 9pm GMT Saturday 07 May 2011

Linda is too unwell today - dreadful pain-  for us to write any prayer or reflection for the Breakthrough Prayer .

Next week is ME Awareness Week; we  hold the whole ME Community in our prayers. Let us pray for all who are suffering so terribly- without any hope of treatment, respect or  cure.

We will join with you, in prayer,  at 9pm.

The Breakthrough Prayer by Theresa and Pauline

God our Father, we love you and know you love us. Today with one voice we beseech you to help us in our suffering.

May we bathe in the light of your love and healing, giving us strength to get through each day. By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair.

Enfold in your special love, those who live alone enduring further isolation and loneliness. Dearest Father we pray fervently for a major medical breakthrough in ME.

Bring your Divine inspiration to the researchers of this terrible disease, which is sweeping across your beloved earth .

May the mountain of ME be removed and thrown into the sea.

Through our faith we trust and thank you , in the name of Jesus Christ, your Son, Our Lord. Amen.

A letter to our local LibDem Councillor , on the eve of the UK Local Elections

(We were very pleased to receive a  positive,  immediate  reply from Norman Lamb MP, Nick Clegg's Chief Political Advisor, to this letter).

 We are thoroughly disappointed with politicians and politics ;  specifically the constant neglect and harassment of sick and disabled people  over the years.

Having a disease that is  neglected, not treated , not adequately tested for, nor treated biomedically , despite being a classified neurological disease,   and having to constantly endure deliberate  misrepresentation in the press and medical journals,  and  in Govt policies and NHS clinics, as well as our  disappointment in  the LibCon coalition and its attitude towards disability and benefits specifically;   it is particularly galling to read your pamphlet that came through our door this weekend.

 Where are the policies locally and nationally that show valuing to disabled and carers.? We do not see them.

We feel that despite the Lib Dems and in particular Nick Clegg having awareness of the very real needs and difficulties of people with disabilities and particularly people with  ME,  nothing has been done to support disabled people locally or nationally where it counts. Please see attached my husband’s letter to Nick Clegg last year, which sadly , was not replied to.

 Financially your leaflet  states that :

 1.  There are fairer pensions and

2.  There is money back in your pocket.

Again this leaflet  and the LibCon agenda shows total disregard for the disabled who will certainly not have money back in their pocket and certainly not a fair system of benefit. The disabled are being targeted  to pay for the disregard of the Bankers to the economy. Rather than restoring the link to earnings as with pensions , for disabled , the cuts to benefit are cruel for the long term sick and punitive.

Please see attached our feedback, written in conjunctuion with the 25% Severe Group,  : “Neither Reasonable or Fair on the Government’s  Welfare reform proposals. 

I am an extremely ill and disabled  person who has been so for over 17 years and yet if I am lucky enough to get through the reassessment to ESA benefit from IB then my benefit will effectively be cut.

Not only will this mean I will lose out each year but as things stand the LibCon Government  has already effectively reduced the allowance by changing its linkage to the consumer index rather than retail index  so I am already relatively poorer without taking into account the VAT increase..

Further the DLA with a current rate of 0.5 % fraud rate, is going to be  abolished in favour of a very unfair , dubious replacement benefit PIP which will ensure 20% cuts - so how will that support or protect the disabled and the poor? The consultation process has not listened to concerns or requests to keep DLA as it is successful and effective.

After 15 years of repeated reassessment and proving medically again and again how very sick and severely disabled I am. I was awarded DLA  indefinitely. Every time the effort made me even more ill. Now I learn that with PIP I am going to have to keep being reassessed regularly again despite there being no treatment no cure and no policy that validates a biomedical need for my illness. It is simply  persecutory to continually hound the severely disabled. 

Not only that but people will be hounded on both benefits to keep proving they are sick, the stress of which is likely to increase health issues not the opposite.

Further to this disregard for fair  financial  support for the disabled, absolutely nothing has been done to pay carers proper rates of income to support them . My husband  cares for me day and night year in year out and receives less than £1.00 per hour. A person offering help for 35 hours a week gets the same rate of pay as a person offering 24 hour  day care. The unemployed are paid more than carers which is unbelievable.

This is completely unjust and yet no government addresses these very harsh realities and impoverishment of carers. It is just swept aside. we feel that carers and disabled are disregarded as voters and are never considered important sadly. Yet the  LibDems stated in their manifesto that they would protect the most poor and disabled and in need. the reality is sadly far from this. I wait with trepidation for the changes in benefits to come in meanwhile my husband worries how we will manage financially and how he can possibly cope if he has to try and do paid work as I cannot manage without his full time help.

On top of this the LibDems made a very clear statement about ME acknowledging the very real need for biomedical input when they were not in government but nothing has been done since to make any change of values in getting the physical needs met of this utterly wronged and neglected subset of society.

 We have been trying for over a year to get the NHS to pay for treatment recommended by a consultant , there is nothing on the NHS to help me and the  NICE guidelines have yet again been compromised by the psychosocial lobby .

 We are thoroughly and utterly dismayed by the lack of policy or recommendations by  the LibCon  Govt and the targeting of the sick and disabled financially. 

Please tell us how voting for you locally would actually help disabled people and carers?  Locally and nationally as a party , we feel , you have completely let us down. When can we expect to hear any championing or awareness of the real issues facing disabled people and carers  that we have outlined above by the Lib Dems??

Yours sincerely,

Don't bother me

Someone once said it's the only love song you ever need; I still cannot listen to "Jersey Girl" by Tom Waits without a shiver ;  I have never heard such a simple,  powerful expression of love.

As the song says : being in my angel's  arms is all I need "..she gives me everything". My wife and I are utterly in love.

"Nothing else matters in this whole wide world."

It was okay at the time, but how it got to me yesterday. I met someone I  haven't seen in ages - for I have been nowhere for ages.

"Are you getting a break" she kept saying, well meaning. "After all you have to look after your sanity."

Sanity....?? Have you any idea.....?

As if  I would say to her , oh are you getting a break from your husband ?

So, I ended up just out of it yesterday. How frail we are. need to be so careful, when trying to help.


A sea of compromise

We're all swimming in a sea of compromise, called " chronic fatigue syndrome"  and floundering right in the middle of it are the most Severely Affected; it's a right mess.

Nobody sees the people who are most  ill, nobody hears from them. The ones  who have the most severe neurological symptoms are invisible; while there  are  many wrongly diagnosed people who think they have ME . It is not helping.

Thank God for Natalie Bolton's forthcoming film : "Voices from the Shadows." It has  shaken me to the core; I am shaken still by it. If anything has the power to make the difference, it is this footage of unadulterated torture .

There really is a vast difference in the experience of the Severely Affected  sufferer who is extremely incapaciatated all the time and that of someone who is tired all the time. 

Whoever heard of a disease where the most Severely Affected  are offered nothing and the less Severely Affected  are poorly defined by an ambiguous diagnosis that makes it impossible to say who has ME ?  

I am stirred by the recent comments on our post "Where are the Strong Voices ?" to speak out.

After  all this time I am no longer interested in ME politics. Of course I care that people are suffering. but my concern, my focus , everything is upon  my wife's hideous daily experience  and I am fighting the fight of my life for her.

What label to use ? It couldn't be simpler for the Severely Affected :  "ME";  all else, including the much-needed  insurgency,  follows. If you haven't got the neurological symptoms, then  you just don't have it.