Can we talk about dying?

I have been in a crash for several years now. I have had a long time to think over my life, the awesome things I have accomplished and the regrets. Oh they loom large. Lately I have been thinking about dying, and how to prepare for that. I don't seem to find much in our community about dying. I am a bit surprised.

I do have a severe case of ME/CFS....I have accepted that. What came as a surprise was when I visited with Dr. Lapp and he was able to say to me that my heart failure was going to be what kills me. Heart failure? HMMMM What caused this? His reply..."It's part of the ME...your heart is a muscle". OHHHHHH Now it makes sense to me, but I had never heard anyone talk of heart failure with CFS. Well, I also have respiratory failure, and renal insufficiency. So I am pretty sure I am going to pass on sooner than later.

My sister had CFS and died 2 years ago....her death certificate (age 48) reads, heart failure, respiratory failure, all organ failure etc. Never a mention of FM or CFS. HHHMMMMM Again, heart failure/CFS/FM.

So, I am thinking about a lot. I pray a lot...especially for God to care for my children. My youngest has had a very ill mother for over a decade. Wow... does he remember his energetic and vibrant mom? All the ballgames I missed, that's what he will remember....my older daughters do not even begin to understand ME/CFS. They were still home when we went through the , "well, maybe it is Lyme, no, not MS, possibly Lupus and on and on. They became numb....can't really blame them. But oh how I love and adore them. My little grand daughter Ava calls and says to me, "Grandma, can you come and see me?" How do I tell her I am too sick to travel? I feel so sad for her...as well as my other grand children, whom I may never see again.

The Forums help. FB helps. Reading the Bible really helps. Prayer helps. My husband helps. Calls from my kids help. Living on the mountain helps...oh how I love the wildlife. Surrounded by a 500,000 acre National Forest brings serenity and loneliness. I talk with my family Priest....he is wonderful.

So, I ask? Does anyone else out there think of dying from this horrid illness that has taken our lives away long before death looms?

Yes....I would love to hear from you. I am not afraid to speak of dying,

Love to you all,
Marian

Comments

Dear MEG,

I much admire your fortitude and strength in the face of failing organs and health. I'm sorry that you are going through so much and knowing that your greatest suffering is that of limited contact with your beloved family. I'm glad you are taking so much pleasure and joy from the simplest things in life- your grandchildren, the wildlife and the mountain views. I too value the time and the interaction that I have with friends and family, and am so thankful for the beautiful bush environment around me. I'm thankful for those moments of joy I can have amidst this illness.

The preparation for dying is such an important and valuable part of life, and I am glad that you are thinking of how to best to do this and making preparations. I, too, often think of how I can prepare myself because the truth is, even though I don't expect to die soon, I know that the unexpected has happened. What would I like during my memorial or funeral service- the hymns, songs that express my faith and the testimony of my life? What do I want friends and family to come away with that would give them much hope and encouragement in their continuing life on earth? What can I do now that stores up treasures in heaven and leaves a lasting legacy?

I don't so much think of the dying act (or try not to) but the of glory that awaits when we pass on. I hate the thought the actual dying may be prolonged and painful. I'd prefer the way out of here to be as quick as possible. My focus on the moment is Psalm 23. I know that despite my fear and trepidation "even though I walk through valley of the shadow of death, I will fear no evil for you are with me, your rod and staff, they comfort me"

Every now and then I reread some favourite Christian books on the the wonderful things that await us in heaven. Such books like "90 minutes in heaven" are such an encouragement to me and lift me well beyond this life and remind me of what is really important. Oh how I long for that time when there will be much feasting (vastly important to me because of my highly restricted diet - bring it on :victory: ) and rejoicing and celebrating. Oh and all those people we love and know- completely restored and healed. Imagine what perfectly good times we will have with God at our centre, his light and love perfectly accessible to us.

This promise of Ps 23 has been such an encouragement and balm to my soul:

Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

Meanwhile I have not given up hope of healing for myself, for you and all us who are suffering.

with love and big hugs,
Snez
 
Hi .. I dont mind talking about death. We all gonna die some day.

I occassionally think of dying and often look forward to that day (dying is a great excape from this "life" which at times its hard to really call life).

Im kind of surprised a ME/CFS doctor actually said you will die early thou i do believe it will be the case for many of us, dying some years earlier to what we would done had we been healthy.

I dont know why but Ive always believed im going to die in my early 50s. Ive had ME for 14 years and each year tend to develop more permanent medical issues... at the rate Im developing medical issues as well as having a very bad family history of things and bad genes. Its hard for me to imagine ever becoming old... I just cant at all imagine it. With all the facts, it isnt a logical thing for me to believe.

Ive for years got health issues years earlier then I should of done eg osteroarthritis at 35 (which they say dont usually start to happen till one is 40).

Frozen shoulder before the age of 40 (its apparently rare before the age of 40.. usually appears in 40-60 years old age range) .. Orthopedic specialist this week told me to expect that the same will probably happen to my other arm.

My body is like aging and developing issues far faster then it should be. I dont just feel old at times.. it is like I are old. My medical file(s) are bigger then an elderly persons. The elderly think of dying and prepare for it... so just maybe we should be doing that too.

It's sad that your sister didnt have CFS put onto her death certificate. Sad that all the cover up on the seriousness of our illness goes on and how it may take many years away from many of our lives.
 
Thank you for starting one of my favourite topics MEG. I often think about death, and sometimes even about suicide, although my illness is not as severe case as yours. There are times when I would search google for painless suicide methods, but they all look pretty scarry to me so I won't suicide ... Then I would accept the fact that I'm too fearful to suicide. So I begin to meditate on my natural death - I imagine that all my organs stop functioning, and finaly there's nothing left of me. Then I would realize that the world is doing pretty well even without my existence. Which sounds so horrible for my ego. And I feel really bad for that and cry. And then when I finish crying I finally realize that to be non-existant is maybe not so bad.
 
I would imagine anyone who has had this illness for very long, thinks about death often.
It has been strange to live many hours of my days for several years amongst the normally functioning people, knowing that they do not think of such things, and would never understand, and the things that they find interesting do not interest me.
I have thought about death every day since I was 31. (I am 45). I became ill with an acute viral illness (after a long while of feeling "run down" and requiring daily 3 hour naps) when I was 22, but at age 31, another thing happenned that really changed my health and life permanently. At that time, I did not even have a name for this horrible illness, ME or CFS or CFIDS, whatever it was from which I had never recovered, since I had the "mono" which took, them ten days of fever and pain to diagnose at University Of Michigan Hospital.
I often cry myself to sleep thinking of the pity my life has been, the lost dreams, the things I wanted to do, which I alwyas thought just around the corner, as soon as I felt better, but never came to pass, and the lack of promise it often seems to hold that I've gotten so much worse and so much has come to pass, and the fact that since I am alone, I will likely die alone, poor, sick and in pain.
These cries-to-sleep developed a pattern, the last couple years I was sorking. I noticed I would sink into the wailing and sobbing, for hours, on Friday nights, and not until then. I would be so exhausted from pushing myself beyond my capacity to drag through a few hours a day to work, but at the same time, only on Friday, did I feel safe and relieved enough to let down my facade enough to face how bad it really was, how hopelessly ill and also alone I was.
However, now that I have finally gotten so sick I could not get out of bed at all for some time, and no longer work, adn at the same time, finally got diagnosed and got into medical specialist treatment a year ago for the first time, Iin a way, I have a budding hope, that perhaps something great is happenning, in the final hour! Or perhaps it is not the final hour?
Much of my life has become a confusing balancing act between trying to prepare for death and be at peace with that, as well as with the way things are now, and on the other hand, making it perhaps not have to end up being so, like, perhaps I can find companionship, perhaps I can accommplish something meaningful with my life first, perhaps I wil not be in pain when I go, perhaps I will not be sick alone and struggling when I go but will rather make it my choice when and how to go...
Warrior Seeks Peace
 
MEG,
We've all had feelings of finality, wishing for some kind of end. Day and day out, endless sickness. It's like a huge crushing, grinding burden. Sisyphus had it easy. And of course, advancing age doesn't do much at all to raise the spirits in this battle. One of the ironies of life is that as sick as we become, the human body strives to stay alive; and science will probably keep us around much, much longer than we expected. For most of us, our demise will probably be under not entirely expected circumstances. Jack Kervorkian, who assisted many terminal patients take their own lives, himself died at a hospital. I hope he was at some peace. It brings to mind the now-famous five stages of grief that became a popular topic back in the 70s. Given the bizarre and agonizing nature of our illness, I suspect many of us have visited a phase or two and come back. If not grief for actual death, the grief for normal life you once lived.

1.Denial "I feel fine."; "This can't be happening, not to me." Denial is usually only a temporary defense for the individual.
This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.

2.Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?" Once in the second stage, the individual recognizes that denial cannot continue.
Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.

3. Bargaining "Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just have more time..."

4.Depression "I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.

5. Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with her/his mortality or that of a loved one.
 
Dear all,

I am glad to be reminded of the stages of grief, as they happen to us who are chronically ill. And that just when we advance a stage, back we go to a previous stage. GGRRRR The denial stage no longer works for me as I struggle to breathe at times, yank on my oxygen tubing, check the oxygen settings etc. No...it's real. How I liked the denial stage! It worked for many years.

There is hope, we may get that last minute cure. We can strive for that. There are many times when I am hopeful.

We may be isolated from family and friends, but we have each other here on the Forums. I am thankful for people who truly understand. It just seems unfair to have such a horrid illness and have it trivialized as "Chronic Fatigue Syndrome"......oh, please....how can we expect others to understand with a name like CFS?????? Yet, I want CFS on my death certificate to show others...hey, this illnes IS real, it IS terminal. Just takes it's time...

And Snez, Psalm 23 is powerful. The Bible is powerful for me. Yet, as warriorspeakspeace brings up...we still cry over the lost dreams and the acts of kindness and love that seem lost on us to provide....being a nurse defined me...helping others...so much joy in bringing some relief fom pain to a patient. Sitting with someone as they died. Being with a family during a time of need...my patients taught me so much. So many had such strength...amazing faith. Can I be as strong? I don't feel it, but just yesterday my husband said to me, "lady, you amaze me, you are so strong to have dealt with this for so long"....maybe I do have more fortitude than I imagined.

My work now.....I'm still not quite sure. Certainly to be strong for my family. Do acts of kindness for others as I am able. Be loving....and accepting of those that don't understand. ......Not be jealous of those who have "gotten better"....oh I struggle with that. I am so happy for them, but yes, still a tad jealous. How horrible of me.

Thanks for all the wonderful responses. Thanks for sharing your pain and your hope.

Today is a good day...because of you.

Love and hugs and hope to all
MEG
 
Hi Meg
About 9 years ago I became aware that I was not living, as such, but was actually dying. This was hard to explain to someone who hasn't been there. I got told by a higher power (became aware if u like) that I had about 10 years left to live. I made a deal with the higher power..."bargaining" I suppose...that I would like to spend those years doing something significant, and not wasting the time. So I took on working in Hospital pathology as a med lab scientist, collecting blood pre- and post-op from Neurovascular, spinal & general vascular patients...processing their blood tests...cross-matching blood etc. I learnt a lot from those patients, and from the other staff in the hospital...I saw miracles...I saw healing...I saw living...I saw dying...in 2006 I spent days holding my mother's hand as she died with melanoma & repiratory failure...this was a privilege.
I coped with working full-time by sleeping lots on weekends, and by not having a life outside work :(
Now I can no longer work...and I'm allowing healing to come to me...people I have met on PR have become my new friends. I feel really sick...today 4 people validated my feelings and that felt really good...they also validated me as a human being...that also felt really good. One other person ripped into me...4:1 not bad on the balance of things!
Thanks to my Neurologist today & my GP who have always validated me. Thanks also to all my friends here on PR...and no I haven't lost the will to live...nor will I give up the search for truth...nor my faith in a power much greater than myself.

Meryl
 
I think about dying all the time. Not in the front of my mind; it's more like an old friend in the background, reminding me that all of this will pass, keeping my life-events in perspective. I don't know what happens 'next,' either tomorrow or when this life is over. But it feels healthy to think about it now.

I have also received information from 'beyond' at times. So far, the information is useful, but the timing is never right.

Madie
 
This is such an important subject! Thank you for posting this.

I have read articles where some doctors basically say that CFS is chronic heart failure.

I do feel like I'm slowly dying of CFS. I pretty much think about it every day at some point. My cat is 4 now. I figure when my cat dies, that'll be it for me. I still have hope, though, that I'll find some new research/treatment and maybe will recover. Or at least recover to the point where life is worth it.

I don't think I could get through the day without being in denial for most of it. I also tend to rely heavily on distractions, mostly tv and movies and the internet.

I hope for you, Marian, that you die peacefully and painlessly when you're time is up. And maybe try to drop me a line from the afterlife to let me know there is one. :) That'll make me feel a whole lot better about everything and give me something to look forward to.
 
This is very interesting. I had never heard of the heart failure theory... But, after enduring years of chronic illness, don't we all think about dying? Doesn't every CFS patient yearn for a kind of release that modern medicine cannot yet provide? I hope that the mountain you live on, gives you peace, Marian. I live in Georgia and have no mountain view, but I do have trees and numerous birds. Like you, I gain a measure of peace from the wildlife outside my door. I have no answers, but I share your thoughts.
 
MEG,
I to think about dying. My daughter in law was 38 and died March 3rd of this year, she had ME/CFS. They said they could not find a cause for her death. No one ever believed her illness, she did not have the best of Drs. to say the least. It hit me hard.....we both were sick of the same illness. After that I began to research and yes, we can die from this. I am a nurse and have realized that, of course my organs are affected by this, why not?? I now have asthma or something??? I do have heart involvement as well.
What makes this difficult is not that I will die, we are all going to die, but that I miss out on so much of life due to being sick. It comes down to what I make of life being sick, what can I contribute that gives me joy. If I can get some joy out of life, with still being sick.....I have to be OK with that. I also have a faith that helps me, day to day. I have people who pray for me.
Not much else to say about the "dying thing" I guess. Life has it's struggles, this one is mine.
 
To all, for whom I am so grateful,

Jen 1177: I have printed out this article to take to my PCP (Primary Care Physician) for referral to a metabolic Cardiologist...as an RN who's subspecialty was Cardiac Care, this makes ALL the sense in the world to me. It would also explain my mothers and my sisters cardiomyopathy....my sister died several years ago of CFS/cardiomyopathy at age 49. DR. Myhill's article provides me with a perfect description of my cardiomyopathy/heart failure/kidney failure/respiratory failure/CFS! Next I ask, should we start a thread on Dr. Myhill and the Sinatra Protocol, or is it well known already, just new to me?

Today I am having much trouble breathing. I try to take deep breaths, but the stamina is not there. Too hard to breathe, you say....yep, takes too much energy to breathe. So, I sat up, found my laptop buried under the covers and turned to the Forums. (I had not felt well for days, so had not had the energy to peek at our responses.) I feel comforted, feeling empathy for you all and for your stories and thoughts. What a comfort to know others are out there...sharing concern and throwing in an educational component.....some things to think about.

A little news from my mountain....last evening, my mommy racoon made her nightly visit. But instead of eating what is left of the birdseed for the day, she laid down on the deck railing, right outside my bedroom window, and took a little nap. Then she and I talked...she is a very good listener! Her friends, the hummingbirds are going through a full feeder of syrup each day...the babies have arrived and are eating with mom and dad. If I venture out to the yard, which is forest, I can call my deer to come and eat...yes, they come when momma calls! Soon, I hope they bring their fawns. ( we are 12 at the moment) And last but not least, my black bear has been absent of late...maybe busy with her cubs! And the birds and turkeys are a constant salve for my soul. One day I hope to have the energy to tell stories about my four dogs and cat! They are all part of my animal kingdom...my peek into heaven...that helps aleve the fear.

Love to all....

Marian
 
Hi, Marian,
Your mountain sounds like heaven. Sure beats where I'm living.

Glad I could help by sharing that article. I thought it was more well known, but apparently not. :)
Guess I should start a thread, huh? I'll look into whether or not it's been done already...

Don't know if you ever read the book "Dune" by Frank Herbert? It's one of my favorites. There is a "litany against fear" that some characters recite to themselves in order to stay calm in life-threatening situations. Years ago I memorized it and I use it to calm myself sometimes.
I'm afraid of breaking copyright rules if I put in in this post so I found a link:
http://dune.wikia.com/wiki/Litany_Against_Fear
Maybe you can memorize it or else print it out and read it when you need to.
Hope it helps.
 

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