Hi our dear blogger arme.
We have a little, but big, question for you all today.
What do you do, when you are going through something that has broken your heart, and you are stuck in your house or in your bed, all alone, with nothing to help you, what do you do to cope?
We would really appreciate your thoughts on this, ,anonymously and/or confidentially if it's easier, whether it be on our comment stream below, or via
*email at contactalisonLouisebell@gmail.com
* text/voicemail/whatsapp 07971151438 or internationally +447971151438
* or kik alisonLouisebell
Our love to every single one of you, because we know you will all go through/will have gone through this at some point.
We are here for you all!
Best Wishes, Much Love and Blessings
Jodi/Hbird and Alison/Tink
Aka
The Tinkerbelle and Hummingbird M.E. Blog x x
20 comments:
I will take a day or two to think over your Question and then send a reply. I have 30 years ''in'' now with M.E. , so a lot to think over. Leigh Anne
Questions don't get any bigger than this one guys
.It's some comfort that there are others who are, have been, or will be in this same lonely, castaway and desolate place as we are at the moment. Everything is subject to change, (eventually), and hope does spring eternal in the human breast.
I love the movie "Castaway", when Tom Hanks replies to his mate on the plane after he has been rescued..."You never know what the tide is going to bring in".....referring to the half of a portaloo that washed up outside his cave and which he used for a sail to enable him to get off the island.
We will eventually get off our island, one way or another. I cannot believe that the character that is forged in the fires of our suffering is to perish along with our bodies of pain. Surely that character and strength of spirit that is unique to those who have suffered as we have must be for an eternal purpose?
I have struggled with these questions for near enough to 5 decades of M.E.
Maybe, just maybe the destination is so unimaginably glorious that it makes the hideous journey worthwhile.
2 Corinthians 4:17 in the bible, along with numerous other passages certainly states as much in quite unequivocal terms.
Strangely I haven't found much else written by non-Christian philosophers and poets down through the literature of the last few thousand years on the subject -previous generations seem to have stoically or fatalistically accepted suffering as a part of life.
C.S Lewis in "The problem of pain", and Phillip Yancey's books "Pain-the gift nobody wants", and "Disappointment with God" attack the issues honestly and compassionately, even if they leave more question unanswered than I would like.
Everyone has their own coping strategies, and certainly I have found focusing on eternal or philosophical issues like these, and trying to figure out whether God is a monster that somehow causes our suffering, or as in the case of his own son on the cross distances himself at the moment when we need him the most.......has been of precious little help when my primary goal is to just get through the next few hours without giving up and pulling the plastic bag over my head to end it all.
I have been blessed with a fairly good imagination, and from the age of 7 or so I have been able to travel into worlds and situations of fantasy. Something like a movie in my head. God knows when you are in a full on relapse you can't watch tv, and when I was a kid that wasn't an option anyway. The pain is still there, but more bearable because I'm not....if that makes any sense.The only problem is that blocking out pain in this way also blocks out everything else that has to do with real life and people- the way I cope with being in the (pain filled) real world is by focusing on the little things....the way the afternoon light hits the leaves of the tree outside the bedroom window....the sky if I can see a part of it is an endless source of joy. I never tire of seeing the infinite variety of shapes and hues of clouds, and the way birds so effortlessly use the air as their playground. Don't get me started on dreams of flying! Surely in my next body I will be able to fly like superman?
Thank you again Jodi for sharing your knowledge with us all. Since I discovered your website several years ago I am coping so much better. Knowledge really is power, and M.E really dis-empowers us in ways that healthy people could not begin to imagine. You have redressed some of that imbalance, and for that we are forever in your debt.
Ernest Thrush
When my heart is breaking I allow myself a little time to feel the pain (after all there may be a lesson I need to learn from this experience). Then I stop. I rein myself in and instead of being a slave to my emotions, I become a master of them.
Although it may be difficult to cry, scream, run, or even write when being so ill and confined to one room and no one to talk to, when it comes down to it, this is something we need to do on our own. Abled or disabled bodied, this is our time to either grow from it or let it consume us.
The one thing we have got going for us is our imagination, our thoughts, our beautiful mind. So when my heart is weeping and grieving, I imagine that I am somewhere beautiful – a paradise island sitting in the sand, looking out to the clear blue sea. Sometimes I watch the dolphins joyfully jump in the water, and other times I watch the colourful birds of paradise fly freely and land on lush green plants. Often I am joined by the beautiful spirit of my dad who wraps his arms around me, giving me comfort and strength. I can go to this place whenever I choose. All I have to do is close my eyes.
Other things I do to heal my ailing heart - I place my hand over my heart and imagine beautiful pink light healing me; If I can, I write down everything I'm feeling. I write to the person who hurt me. I write from the heart. I write it out of my system, and then ask my carer to burn the letter; I take Bach Flower Rescue Remedy which I also find very effective; Whenever a sad or angry feeling comes up, I say to myself, “Right, you've got one minute. Then you're gone!”
Absolutely no rush ma*am. We totally understand! Thank you so much.!
Alison
God bless
Dear Ernest
You write beautifully end powerfully. We are so grateful for your response, truly. We will be sure to use it!
Feel free to stay in touch, (my email is contactalisonLouisebell@gmail.com ) i absolutely love talking with all of you, really! But totally understand if ud rather not or aren't well enough.
Thank you for being a part of our community, for caring enough to comment, and for being you.
Much love
Alison/tink
God bless x x
Dear anonymous.
Thank you so much for going to the effort of writing, we know what that can do. But we also know how much it can mean to our readers, how much one simple line, can change someone else's experiences. So thank you.
We hope to use all the feedback!
Feel free to stay in touch, (my email is contactalisonLouisebell@gmail.com ) i absolutely love talking with all of you, really! But totally understand if ud rather not or aren't well enough.
Thank you for being a part of our community, for caring enough to comment, and for being you.
Much love
Alison
God bless x x
The grief and loss associated with M.E. is beyond words.
M.E. is a chronic assault on the body and it is relentless. Unless you live it, there are no shoes that anyone could possibly walk in to explain it. It is chronic torture of the body, compounded by the isolation and loneliness that comes with the separation from any form of normal, social interaction. The depth of the effect it has on a persons entire life cannot be measured by a healthy persons opinions.
To survive it requires a certain kind of courage very few people without M.E. or other chronic disease understand. It is a "quiet courage" of acceptance, not to be confused with giving up.
Therefore, we look to each other for ways to cope, to survive one more minute, hour, day, month, year.
Many online support groups have created safe environments with which to share, vent and be comforted. Given the difficulty and often impossible ability to tolerate even one persons presence because of the the energy it takes away so quickly, these online support groups have been and are the saving grace against the isolation, loneliness, grief and loss that is constant in each of our lives.
We become each others' family and friends. We continue to learn and educate ourselves through this kind of interaction and maintain a modicum of hope.
Another coping skill I have found is a passion for something creative; something that fulfills our spirit. Being outside in the fresh air, even if it's just to sit and listen to nature for awhile can be refreshing to the heart and spirit.
Wheelchairs, walkers, canes, crutches; whatever it takes to be as mobil as possible can give us some of the freedom we so vitally need.
Advocacy is something that is in short supply and is needed more then anything in terms of support. We often cannot fight for the medical care we need on our own. Bringing someone with us who can speak for us when we are too sick and help us with the ongoing red tape of paperwork is invaluable.
The bottom line is that we deserve the care, respect and attention any other serious illness is deserving of.
Rayn
You are so kind for responding., and for all that must have took.
We are so grateful and will be sure to use it.
We are sorry that you have clearly had experience of this too.
Please feel free to stay in touch, my details are above.
Much love and thanks again
Alison
God bless
Dear Alison and Jodi,
Hmmm something that has broken my heart. I am pretty lucky in that I have such a wonderfully supportive husband to give me a hug but there are times when he doesn’t feel as emotional about something as I do, or we may have had a disagreement or he isn’t there and part of my heartbreak is that I haven’t been able to go with my family to whatever outing/celebration that is happening that day. Its not necessarily heart breaking that I can’t go ... the heartbreak is that it makes you grieve the old you that could have joined them.
Sometimes for the first little bit I might intensely wish I could address my feelings by going for a long drive or a walk on the beach by myself as I would have in the past but then the voice that tells me “its no longer an option Amity” wins. I have found that the big thing for me with emotional stuff is that if I am able to recognise what it is i am upset about and just let myself feel it the sooner it seems to become less of an issue. This whole illness is like being a fly in a spiderweb ... the more you struggle against anything the tighter the web holds you. There is very little you can control with this illness but acceptance of what a day brings and the thought that tomorrow may be better is one of the few things that you can hold in your mind. If I am well enough I might draw or write (either in a journal or sometimes on a fb site that feels safe). If I can go outside and have some fresh air and look at the trees and hear the birds from my back porch then that helps. Reminding myself of the good things (eg the wonderful belief and support I have from my husband and daughter, that I am not living in a warzone with this illness or a third world country, that I get the odd day out of my home now, that i have flowers in my garden) stealing a hug from my little dog or distracting myself with a good book of artwork, architecture or fashion to look at .... or a dvd/tv programme that I know will lift my spirit.
One of the biggest lessons from this illness is relinquishing control. It breaks my heart to hear the stories of other people with this illness. I can feel myself getting panicky and wishing I had a magic wand, something to stop them suffering but that just makes me feel sicker and I can’t physically do anything at this point for them. Seeing my daughter starting on the same road with this illness as myself. I’m too sick to have choices. I can’t feel responsible ... just offer kind, understanding words and information if its relevant. We WANT to control things but the truth is that we can’t. Things happen.
Personally I try to recognise what is hurting, feel it, hopefully reach some acceptance and remind myself that “this will pass”.
Oh, and while I am here one thing I love (amongst many) is my husband.
Thank you so much for responding. We know just how much that can mean to others. And it means so much to us!
You are very wise.
We will be sure to use this.
Feel free to stay in touch- my details are above.
Thanks again
Alison
God bless
well once they? tell no more can be done for you 07/11/10 you cry I did in Waitrose of all places the lady on the checkout stopped everything and got out her seat and put her arms around me which made me cry more.
she just said something big huh?
and I nodded after putting my shopping in bags a seeing to my card she called my disability cab number and looked after me till he came
I went home and went to bed putting my headphones on to shut the world out
I am lucky I still have my son who was nearly taken from me last may by a madman on a motorbike ]
he was then dumped by his partner so called who left after the accident when he had no job or money.
when I get very down I turn to my music [I adore noel Scott Engel/walker]and candles I write and talk to my angels when I have no one else being 61 in June I have lost a lot of family/friends but still have a few very good ones
I feel very sad for the ones with m.e. who have never had a life
I wish I could make them better if only for 10 years
people either love or hate me I've never met anyone who says maybe
I too had a lonely childhood
and you learn to draw on what is in all of us
and it never left me
I think a lot came from my grandmother a very strong lady
I have had m.e. since 1984 but, I was put on pills then and told to rest I did get a 10 gap before it stuck me down completely
I think I was granted that time to raise my son
as I'd already lost his father to a plane crash
he said to recently he never felt he was from a single parent family because of how I brought him up
I guess I was just a very good arranger he was never left alone because I knew what that was like to grow up feeling unloved I made sure he was.
even if I did burn myself out as the so called experts says
if anyone is alone this st Val's day
I would like to send them an on-line hug o
and ,says as the song says valentines can't buy her [love minus zero]I think love is like working learning etc if you can away to keep your mind off death
and remember folks we are blessed with two guardian angels talk to them
if you think she mad tell me this who hides the stuff you cannot find and puts in back in the same place.
who when you are fearful sends you a friend
and when your very down have you not noticed a joke or song on the TV/radio that given you hope to carry?
anyway I think I've gone on enough
I certainly feel like it's been year's
take care everyone we all belong in this world we are human kind
we are not names or numbers
think of your bed as a place of adventure
and, remember some silly persons actually pay money to be in as pain as we are.
I agree with the person who like tom hanks the movie he did where he makes an airport his home is my fave a ltd amount of space he finds food and even a girlfriend.
nothing is impossible ?
she
I didn't get a chance to preview so sorry if there's any mistakes in my bit I was registered blind in 2010 and cannot see that well here but, I never give up
I am on Hotmail too not really a Google gal as too many silly people hack into it
I don't allow cookies you see unless they are gluten free [hee hee]
Thank you Alison, for being such a supportive and loving person. It is clear that you are so committed to caring for our M.E. community and I'm sure others appreciate what you do for all of us. ((gentle hugs)) Rayn :)
Thank you so much for commenting she!
So lovely to see you here.
Your message was super, we will be sure to use what we can.
And as for you, Im definitely on the love side, no hate or maybe- ur greeeeat (ok i now sound like tony the tiger from the honey nut cornflake advert!!)
Much love ma'am
Alison
God bless x x
You really are ever so kind.
I totally screenied this for when i need inspiration to keep working!
Thank you so much.
God bless x x
thanks Alison,
the hate mostly comes from consultants/doctors
and intend to live as long as possible to cause them problems
because I've only had a handful that ever been kind
and, when your so worn out /on the floor that's what you need most.?
hugs to all here only another person who has m.e. truly understands [though there are a few earth angels]
you wake up and say what it going to try to do today.
I call it the thief because it try's to steal everything
you hold dear
Gosh. Sometimes it seems like waves of heartbreak may some day break me.
I could not get online since the end of last year until yesterday. And seeing everyone's input is really so healing and helpful. Creates a connection which I dearly missed and hugely rely on.
Prayer is powerful. For self. For others. For animals and the world.
I'll reach out and place my hand or even just a finger on my cat and feel her warmth or purr. Sometimes she'll move in closer. Almost as if she knows.
I rotate postings on the wall and then use them as Mantras. Currently:
"Consider the Lilies in the field. They toil not - neither do they spin" Luke 12:27
Yeah so, relax into reality and know I am not alone in ME - there are so many of us.
Exhale into what is. Breathe in peace. Exhale thankfulness.
Self-talk as own cheerleader:
"You've always gotten through it so far"!
Some ideas here to incorporate.
GREAT bit.
So thankful.
Anony-1
Thank you so much for your input, we soo appreciate it and plan to incorporate it in our proposed blog discussion. We are so sorry that you experience so much heartbreak as you mention above. You are so strong!
We are here for you!
Much love
Alison
God bless
Without my Lord Jesus Christ I would have thrown in the towel by now. My faith has saved me and kept me as positive as one can be with this horrid disease, or syndrome as they say? My Bible, God's loveletter to us, has been my friend, my encourager, my hope. I think sometimes that this makes me closer to God because sometimes He is all I have and He loves to spend time with me.
The online closed groups have been a huge help and I have learned more from them than any doctor has EVER told me. It was amazing to find out after suffering so long that I was not alone. I was so clueless. Had to go through anger, then grieving, then acceptance. So many people do not understand and look at you as just being lazy.... and immediately turn a deaf ear, so the people we know dont even know what we are experiencing bcuz we are afraid to share. God listens and comforts and can keep joy in your heart even under these crappy circumstances.
This life is but a vapor, eternity with Him in our heavenly perfect bodies is what I look forward to! God bless everyone!
Jeanette
Beautifully said ma'am. Im very religious too, and for me , the limitless trust i have in God is truly one of His biggest blessings for me.
Must say tho, m.e. is certainly not a syndrome!
Much love
Alison
God bless x x
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