I thought to write here today. Even though I don’t really want to.
It’s the topic everyone works hard to avoid bringing into conversation.
PAIN: Chronic and severe and endless.
With the result that there is a loneliness that seeps over the sufferer. She knows no one wants to hear the same old, same old. So she lies, or covers up or uses a selection of old tropes.
Q How are you?
(1)Oh, you know.
(2)Much better than yesterday. (Lie)
Q What does the doctor say?
(1)We don’t say: Well (s)he too is sick of my calls.
(2)We mumble a selection of vagaries.
(3)Waiting for a call.
(4)Will call them today.
Along with the loneliness there’s the exhaustion of just plain dealing with life. Or not dealing.
There’s lack of sleep for one. There’s the ongoing decision of:
(1) suffering and being alert or
(2) ingesting painkillers and becoming a zombie.
Friends and relatives get impatient. I understand that.
But it really makes things far, far worse when they ask for details of the pain and it’s offered, only to be met with deadly silence or the clicks of an escape hatch being opened ("gotta run, talk soon!") and the listener vanishing.
So chronic pain is isolating for multiple reasons. We are not looking for solutions. We know all the solutions, we’ve explored many avenues, some involving more pain we can’t endure.
Out tears are in isolation along with frustration and a sense of hopelessness. And loneliness.
We are the brave.
We learn to let very few in to what is really going on. We forego, with longing, the things we used to do in our health that we would simply take for granted. For example, I see someone walking on the street or in a movie and I go "look at that! they're walking with a smile!"
My big job today was sorting my weekly pills. A job I detest with all the fires of hell. It takes 30 minutes. If I don’t drop pills on the floor.
My helper comes tomorrow so I don’t have to do dishes which is excruciating, standing at the sink.
It’s over two weeks since I slept in a bed as the recliner is the only place I can do a series of catnaps through the night with some small semblance of comfort.
I can see why some go insane from this kind of existence.
And so very few that understand it.
I know I never did.
And I realize one of the greatest gifts in life we can offer each other is to listen.
Thank you for sharing. Pain is a mystery, and not to be understod before you experienced it. I want to listen!
ReplyDeleteThank you Charlotte. It really feels good to vent. I have two good friends I vent to, one on line and one live, but there is always room for more. I hate all this self-censoring.
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Listening, really listening (and not waiting for the chance to put our own two cents in) is a gift.
ReplyDeleteHuge hugs. Sympathy. And, sadly, empathy. Been there, hate the t-shirt.
Thank you EC. We should design a REAL T-shirt, with little boxes of our conditions all ticked. So we don't have to engage with those that really don't give a rat's.
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Hehe yes design that Tee. I bet there'll be buyers!
DeleteCharlotte I must get my ahead around it, I know it would be a hit.
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Just here to listen, no solutions to offer. A friend at church today bemoaned the fact she cannot find a neurologist in our large city. I nod, I know this to be true, and I have no solution. It is not fair. It is wrong. I wish I could conjure up such a specialist, but I cannot so I can only listen .
ReplyDeleteThank you DKZ for understanding. That's all we need, is a good old listen and often a good old laugh at the human comedy, pain and all. Solutions not welcome, we know them all. And yes it's so very difficult to find specialists in pain management. And magically, when we talk about the pain, it alleviates it somehow.
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I find there is no one to listen but blogger friends. To those around me I only say good morning, and if asked how I am, I'm fine. As they say, beats the alternative. But how I wish we did not hurt so.
ReplyDeleteI'm the same Joanne, so very few to engage with in an honest way. Fine is my standard response even as I limp away, much to their lack of curiosity as to my barefaced lie. Hallelujah for the blogging world.
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I’m listening WWW - and I hear you.
ReplyDeleteAs so many others say - ‘if you told them how you really feel they’d run a mile’ not because they don’t care, it’s because not being in ‘their shoes’ they just don’t understand.
There’s no point in being ‘generous with words’ so when others ask how I am….I just grimace and say “the back you know” and they nod (and run a mile)
Oh Cathy, yes yes and yes. No one wants to hear the truth or there is an air of disbelief that you're not doing SOMETHING about it. As if there is a choice and you haven't explored all avenues.
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My mum is becoming very frail and has multiple health concerns. She makes me so angry with the way she won't follow sensible advice or do reasonable things to help herself.
ReplyDeleteYour posts remind me to be kind because old age is cruel
It's so many layers of issues Kylie. Not least of which is the fear of losing independence and autonomy. I can see the impatience in my daughter now and again much as she tries to hide it. She is solution driven and immediate results. For instance stretching, why am I not stretching? Well duh, it hurts too much and my pain quotient has topped out already today.
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I have to admit I'm one of those that don't truly understand it. I simply don't have the kind of pain that would make me understand. I can offer "sorry's" and virtual hugs, but I know they don't really help. I do wish something more can be done though. Do you qualify for daily help? At least with getting the dishes and/or laundry done?
ReplyDeleteI have a helper come in every two weeks River, which is adequate, or nearly adequate for now. But I may have to look for more assistance. If you can shower yourself they won't even consider assistance. the criteria are pitiful. For instance, I can't raise my arms above my head as my legs collapse but that doesn't fall under the guidelines.
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Thank you for this post. I am one who thinks she has solutions and yet I know better. I need to be reminded that a visit with a friend often requires that I just keep quiet and listen.
ReplyDeleteI learned that too Mary, from sick friends I would visit. Often they just wanted their hands held and silence. Hand holding can say so much more than words. And it's easier on the visitor who will visit far more frequently. I know with a few I visited daily just to sit and be quiet with them.
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I'm certainly not opening the escape hatch. Extreme pain is horrible and it needs to be talked about. I have a few aches and pains but nothing too serious. Hopefully I can avoid the level of pain you're having to deal with.
ReplyDeleteI hope so too Nick, I wouldn't wish this kind of existence on anyone. I'm into my 3rd week of insomnia and pain and it's taking a huge toll on this ancient body.
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We listen with sad hearts. Gigi hawaii
ReplyDeletethank you Gigi.
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Oh luvvie, I am so sorry you've been suffering. xoxo Kate
ReplyDeleteThank you Kate. We all suffer, but it's the degrees of it sometimes that send us over the edge a little.
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I feel like you in other ways but same as that worn out feeling of explaining or sadness of disappearing. Lost many along the way and faithfully hang on to the few that get it. My ears are wide open to listen. I know that yearning to bring some brightness as one manages the hours in a day. Want a check in and forever long as needed. Sounds terribly exhausting not being able to gain strength or have a really happy day. I'm often isolated and plenty of time if you need an ear. Crazy how so many online present themselves with concern and understanding than ones closest to us. You got my email. Hugs
ReplyDeleteThank you CJ, I've often said that I've gained many kindred spirits over the years via the internet. Some of whom I've met in real life much to my delight. I'm just check for you email. Thank you for the understanding and the fact that aging, though a gift, can be an extremely lonely time when most of our friends have gone. I review some of my old gatherings of my tribe and most are now, sadly, no longer with us.
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I hear you. Good to just let it all out. l can identify with what you're saying. The incessant pain can totally alter one's disposition, but add to that the sleep issue is really wearing. Some things won't let themselves be ignored.
ReplyDeleteI have a tendency to respond to well-meaning "How are you?" greetings with, "Well, I'm here." Most don't really want to know and I really don't want to open the conversation to hear, "I'm sorry" or have somebody try to follow-up, grasping to try and offer a solution. I always remember my Mom once sharing some ache or pain she had been having. I responded, "Oh, I didn't know that -- you never told me -- why didn't you tell me?" She said, "If I told you every little ache and pain I have you wouldn't want to come to see me." That wasn't true, of course, as I tried to reassure her, but that was how she perceived it would be. Thinking of you and will listen.
Oh Joared you nailed it by sharing that about your mother. I become quite terrified of turning my closest off by answering honestly as to my current condition (which is pitiful - not least of which is the lack of sleep so I sound totally off balance and feel I have to explain, etc., and then........) I often respond with "I'm vertical, barely" which would arrest me in my tracks if someone said to me but usually I just get a laugh and a nod and they move on.
DeleteNo one wants to hear it.
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As so many other things have in your life, this too shall pass. My best wishes to you that it does quickly.
ReplyDeleteYou'd better put that in writing Ramana, it feels so eternal at the moment.
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I deflect. If someone asks how I am today, I might say that I got up early enough to view the sunrise. (Actually, I've been up since 2:00 am.) I don't want to answer dozens of am-I-doing-this-or-that questions.
ReplyDeleteSo, I won't ask any of you any question, but rather will believe what you say and try to absorb how that is impacting you in particular. I will say that of course you should tell us and of course we wish pain were less for you and it wasn't sapping your strength or even will to do the things that have meant so much to you.
thank you Linda for your compassionate and understanding ear. I know your journey has been rough as well and it's good to listen and be listened to. I can't tell you the comfort I get from others in a similar boat who are honest about their shitty and challenging days. The loneliness gets lifted for a while and even the odd smile can appear with shared aggravations.
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It's a long, hard road to bear chronic pain. My father used to answer inquiries with responses like. "I'm in pretty good shape for the shape I'm in" and "Not bad for an old man'' He maintained a cheerful attitude even at the worst of times, and I hope to emulate him. I know how hard it was for him, but what choice did he have? I now have chronic pain, and try hard to maintain my silence about it, but it's wearing and difficult at times.
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