Suffering and spirituality 2

[maddietod]

Hi Madie,

Thank you for your constant support. I do take painkillers. They don't help much for me. Part of my problem is that I'm addicted to some Benzo meds which are playing games with my brain. It keeps on urging me to take more and I want to withdraw but I can't.

Thanks for caring.

Ah, sorry I doubted that you're doing everything you can. I'm still furious that this is the best doctors can offer, and I'll remain hopeful that you'll find different types of medication that will give you the rest and relief you need.

 

[Nielk]

Thanks Maddie. It really helps me knowing that you and others on the forum care. I appreciate each and every hug that has been sent my way.
You guys are really great and I don't know what I would do if I firstly didn't have this safe place to express myself and in turn the support is critical.
I truly appreciate it.
Sending hugs back to all of you.

 

[allyann]

Hugs to you Nielk,

I am praying for you that you find some relief soon. I agree that it is good to just accept the way you are feeling and understand that it will eventually pass. IMO, accepting the way you feel and then actually just letting yourself feel the raw feelings, helps you get to the point where you can move on. Continually trying to push through doesn't help.

Please know that you have lots of friends here who know how you are feeling and will always be here to listen.

 

[Nielk]

Hugs to you Nielk,

I am praying for you that you find some relief soon. I agree that it is good to just accept the way you are feeling and understand that it will eventually pass. IMO, accepting the way you feel and then actually just letting yourself feel the raw feelings, helps you get to the point where you can move on. Continually trying to push through doesn't help.

Please know that you have lots of friends here who know how you are feeling and will always be here to listen.

Thank you.

 

[john66]

Hi Neilk, truly sorry to hear that you are going through a bad time. I know how difficult it can be with the decision to stay on/go off meds, especially addictive ones. I would like to offer support for what ever you decide, but please keep in mind that you are not using these things recreationaly and with all of the celebrity issues with drugs, the national conversation in the media can make you think things that are not necessarily appropriate to your situation. I say this, because I had abruptly withdrawn from pain killers, which were helping with back issues. I toughed it out! This led me to CFS, after I quit, I didnt sleep for five days and never have slept normally since then. I got lectured from a holier than thou doctor who never saw an MRI-you are an addict! I never took more than perscribed and never got medications illegally. Believe yourself and look after your needs.

 

[Nielk]

Thank you John for your empathy and for your objective advice.

 

[Mary Poppins]

How are you today, Nielk?

 

[Gavman]

Pain is such a massive thing. I find the past when we were halted or unsure of ourselves and that anxiety that we drove back down, is healthy to release. To see, hear and feel as that little child and let it out, when it was shut down by unknowing parents, family or friends.

 

[Merry]

Dear Nielk,

I happened to see in Dr. Jamie Deckoff-Jones's blog today that she mentions that some people with intractable pain are helped by normobaric oxygen treatment:

"I have now heard from quite a few people, in addition to my own patients, that have tried normobaric oxygen by concentrator or tank with various delivery systems, but all using >5L/min for a half hour at least a few times a week. Responses vary from nothing to wow, maybe 50% clear responders. It seems to help more noticeably with sicker patients and be especially useful for intractable pain, the toughest of the tough to treat."

http://www.x-rx.net/blog/

But I know you've been in pain for a long time, so perhaps this is something you've already tried. In that case:

 

[Nielk]

Dear Nielk,

I happened to see in Dr. Jamie Deckoff-Jones's blog today that she mentions that some people with intractable pain are helped by normobaric oxygen treatment:

"I have now heard from quite a few people, in addition to my own patients, that have tried normobaric oxygen by concentrator or tank with various delivery systems, but all using >5L/min for a half hour at least a few times a week. Responses vary from nothing to wow, maybe 50% clear responders. It seems to help more noticeably with sicker patients and be especially useful for intractable pain, the toughest of the tough to treat."

http://www.x-rx.net/blog/

But I know you've been in pain for a long time, so perhaps this is something you've already tried. In that case:

Hi Merry,

Thanks for thinking of me. I have never tried this oxygen treatment. I don't even know where to try it but, I'll look into it.

I appreciate it.

 

[Nielk]

[video=youtube_share;FvbZ5zSZYSE]http://youtu.be/FvbZ5zSZYSE[/video]

PLEASE, NO MORE

God, please give me a break here.
Can you send me some relief?
I need a listening comforting ear.
Please, no more tests of my belief.

I can use some sunshine my way.
A reason to smile and dry my tears.
Please keep my suffering at bay.
Let me be able to enjoy my dears.

I cannot do this without your help.
You move mountains and split seas.
Can you dim my pain, to stop my yelp?
I am beseeching you down on my knees.

I lay humbled, broken in pain and mind
I don't know; will I still see better days?
You are a God of mercy and kind.
Did you just forget me inside a maize?

You create everything new in the world.
Please help find a cure for this ailment.
There are too many of us in bed all curled.
This horror is in need of curtailment.

My head is in pain and spinning out of control.
I would like to just sneak out the back door.
The air is being sucked out of my soul.
I think I had enough; please no more!

 

[maddietod]

hugs

 

[Nielk]

Thanks Madie.

 

[Ember]

You create everything new in the world.
Please help find a cure for this ailment.
There are too many of us in bed all curled.
This horror is in need of curtailment.

Could it be, Nielk, that we've already been given the help we need to find a cure for ME? I'm reminded of Obama's invocation a year ago:

President Obama invoked his Christian faith Thursday, to explain his understanding of scientific advancements, at a town hall meeting in Reno, Nevada.

I am a Christian and a person of faith and I believe that God gave us brains to figure things out, Obama said when asked by a woman in the audience what his health policies could do to assist her husband who is suffering from Chronic Fatigue Syndrome. Obama touted a provision in the Recovery Act that funds the National Institutes of Health to deal with such ailments. We've got to use science to make lives better for our families and our communities and this planet, Obama said.

While he acknowledged he did not know much about her husbands disease, Obama promised I will do when I get back is I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment (sic).

This year, Llewellyn King writes, So this is a disease that, even without a cure, the medical establishment has already indicated that it cannot afford:

The horror of this affliction is almost indescribable. I've been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering.

Mr. King's perspective helps me deal with your cry, Please, no more tests of my belief. Collectively, we've been given (I believe) a choice about finding a cure for ME. As a patient, I get to choose whether or not to forgive...

ACT UP's anniversary prompts in me other spiritual questions: Where was I when ACT UP began its desperate struggle 25 years ago? And collectively, how can we change the world now for Andrew McGorrian McMurdie?

Dear Santa

I wrote to you last year but i think i was too late and you were so busy.
I had asked you to help make me better and my special friends Hugh
and Joan from M.E.

i hoped to get over to see you this year and explain it to you myself
but im not sure cause my Dads not working but he said if he got a job
he would see what he could do.

In case i cant can you just sprinkle your magic dust on us and make us
better.
If you can i would love that and i dont even need a present this will be
enough for me to get well.

Thanks Santa

 

[Ember]

Jennie has posted this Baha’i prayer on her nineteenth "sick-aversary" today.

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[Freddd]

I am still here, and in the best health of my life because my prayers were answered. I was sent back from an NDE knowing that somehow I would regain my health but only by accepting it and doing what was needed. It would have been easier and far less painful to just die. Real help is not easily recognizable because it is rarely what one wants the way one wants it. In the end the strongest motivation to keep going was the vast pain. I woke up every morning for more than a decade in tears wishing I was dead after 25 years of untreated (everything BUT opioids, the only thing that works) increasing chronic pain before I got any significant relief. The Deadlock quartet basically wound the pain back about 35+ years, about 98%, at this point.