Friday, October 15, 2010

Is it ‘Pain’ or is it ‘Just fussing’?

Often, on the web, or always, on the web, end stage people who do blog, even under another name get doubted, get people not really believing. Maybe the person is laying? Maybe it is all a set-up? Maybe it is for attention?

Or maybe you have never had that disease and been inside that skin?

And also, as the posts get shorter and the ‘style’ seems to change, more nitty gritty, less ‘FUN’, less about the good reads we had when we first started going to that blog, then people tune out, or worse, far, far worse, drop silent (or just post doubts).

But then, maybe the person’s life has gone from 20% taking care of a disability/disease to the ‘up in the face’ aspects OF nitty gritty. That pain levels, flare levels, will there be hospitalization, what kind of caregiver, is the caregiver changing are like a 767 airplane taking off directly above your car. And that makes them a bit more important than the cornbread recipe that people used to expect.

And of course, Pain makes you a bitch.

Well technically Pain makes you HER bitch, but not in a nice or ‘let call this sex” but ‘more like rape’ way. Then the world changes.

Because the human body has

But is ‘Pain’ the right word? Pain is defined as, “hurt or discomfort” or “mental distress” and has synonyms: ache, pang, smart, stitch, twinge

Okay, well according to that, I haven’t had pain in a LONG time. Like at least 700-1000 days, maybe longer. When I was untreated Bipolar II the pain I had which was like grey bones grinding made me lay immobile for up to 20 hours a day. And that was for 5-10 months. Which, considering Bipolar II is considered to have the most debilitating pain of the depressions, and that sounds like almost a manic state of joy to me about now indicates that depression pain (which is real, and hellish) is not a good yardstick.

Some of the most extreme literary quotes:

“For a second he remained in torture, as if some invisible flame were playing on him to reduce his bones and fuse him down” – D.H. Lawrence,

“Generalized racking misery that makes him feel as if his pores are bleeding and his brain is leaking out of his ears” – T.C. Boyle

And I am thinking, “Well, that’s kind of what it is like when it is GOOD, or tolerable.” Makes most of the quotes on pain seem like humor:

“The hurt I felt … was something like a thumb struck with a hammer”
“Felt as if I’d been crushed between two runaway wardrobes”
“hurts like gravel in your shoe”
“Bruised like a half-back in a football game”

So thinking, “Those lucky, LUCKY people!” makes it, since people tend to personalize more than empathize make me or someone like me seem callous. Except I have had most of those happen and they, well, I walked about 200 miles in boots that literally sanded my toes into blood. I would walk for 10 miles, then wring out the blood and let it drain out and walk again, up mountain and with backpack. My feet made, well, every long term hiker, people with thousands of miles of hiking, 30, 40, 100 day hikes feel ill, say, “I have never, ever seen feet that bad.” So I hiked in high tops, and sandals and let the blood run out. And now I look back and think, “If only I could bottle this last year, it would have meant nothing. (except maybe an infection and amputation, I guess – but painwise….easy, like a jog uphill).

I had a bad night. I don’t have any Lyrica samples. I don’t have a doctor who will move me up to Fentynal, and I am on 150% of the maximum of all my pain drugs (four different ones). British Columbia’s ‘compassion’ fund for Lyrica rejected a claim in two days (which is like a 2 minute turn around time in BC/Canada paperwork time): no money. The pharmaceutical company says ‘Our phones are not currently working”, and no one has samples. No doctor and no solution except: pain and fear.

Because, like last night, I could not move. I couldn’t move because my body wasn’t functioning. But I still moaned and mewled in my sleep. And I woke up every 75-90 minutes to scream myself into exhaustion, and pass-out/sleep again.

Linda, the times she wasn’t out, would say, “We need to help your pain.” And offer me water. The nurse line said to take me to the hospital. But she went out for a walk with a friend for a couple hours instead. She says looking back, she would have taken me to the hospital. I think it might have been some hope that sleep would ease pain. I have to be in quite several pain to moan, groan, mewl constantly the entire time asleep.

I don’t have a nice metaphor for you about what it felt like. I do know this, that I remembered an episode of House one of the times I was screaming for 5-9 minutes. One of the MANY episodes where he wakes up a burn victim or someone in a coma induced to deal with the pain so he could ASK THEM A QUESTION.

I remember thinking of that, while I screamed, sort of expecting him to show up and ask me a question, because a) not enough energy to move, b) screaming awake or asleep – perfect for House, M.D. And I remember those drugs he takes for his LEG pain. And I planned, as soon as I could MOVE to find Dr. House, and to take his medication away, and beat him unconscious before having a truck run him over, and then reverse over him and park……..for 14 hours. Of course, later, only AFTER I had enough pain medication did I realize that he was a TV character.

It just seemed that his view of pain from those IN extreme pain so perfectly summed up how people DON’T feel others pain. And quite honestly, will go to lengths to emotionally shield themselves to avoid doing so. There are no lack of doctors who know the pain I am, or hospital personnel. But “Not my inch, not my patient, I have a policy…, I don’t prescribe those drugs usually, yada, yada” (What if there was a truck parked on them for 15 hours? Would any of those policies change…… least towards themselves?).

People are silent because ‘I don’t know what to say’. Well, except for: “AHHHHHHHHHHHHHHHHHHHHHHHHHHHH…AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH…AHHHHHHHHHHHHHHHH” (repeat with crying for five minutes, that’s about two seconds there), I don’t either. But I write about it anyway.

People stop associating (brother, sister in law, all other relatives, uncles, aunts, the 30 here in Victoria, the 8 in Vancouver, the 40 or so in the Prairies – don’t want to deal with it, don’t want to deal with caregiving). Friends, associates, online friends, and of course parents (who I hope enjoyed that second cruise in three months, and the trip to see my brother – I haven’t seen ya in, what? Nine months. Or had caregiving of even the most basic level for two years, not even a drop off at the doctors? And you were blocks away? Now THAT is what I call ‘CONDITIONAL LOVE’).

This is not uncommon, in the excellent book What Happened to Lani Carver, Claire is a remission of leukemia, going to high school, still the ‘sick girl’, always trying to be the ‘good girl’ and likable, always second fiddle to the ‘best friend’. Until being with Lani, and sticking up for Lani gives her not just a wide awake in peoples’ self interest delusions but also in facing and taking hard choices. One choice was to ask her stepmother, after a lot of bad shit has gone down,

“I asked her point blank, to her face, “Why didn’t you come to Dad’s apartment when I was doing chemo? Were you grossed out by me?”

“She told me she was very afraid of death, though she couldn’t figure out why – maybe just because artists are afraid of everything. She said that seeing me back then inspired her to make anonymous donations to the American Cancer Society, though talking to me to my face had been too much on her.”

When I read that a “It isn’t just ME!” light went on. Because here is someone who is supposed to be a parent, and there is a child: a young child, maybe 13 going through chemo by herself for two years and her stepmother just LEFT. I mean, just ‘wasn’t around’ but they made DONATIONS to the cancer society (ANONYMOUSLY!). Like the fear of anyone connecting her to her own step daughter was far, far too much to bear. A girl needed her, and she wasn’t there, because she was afraid. Not like Claire was afraid, right? No, Claire was actually a whole lot more afraid, only Claire had no choice, the disease made the choice, and this adult woman made a choice too.

Pain chooses you. At least the ‘hey, we are ripping up your body’ kind of pain. Which is the kind Torture falls under, or ‘Mutilation Torture’ because the reason it feels that way is you are never going to be that way you used to be ever again.

So people step away. What was the ‘passing out like?’ I asked Linda.

“Like a baby fussing for a while before…”


I asked if a lot of babies sounded like that? No. And the moaning WHILE asleep? “Well it could have been a lot of things.”

“Oh.” I tried to breath, “Is that what you thought it was? A lot of possibilities?”

“No,” she said, “It was because you were in pain.”

“While asleep.”


“Completely asleep”


“And the screaming when waking was that like ‘fussing’?”

“I didn’t finish what I was going to say on that…” Pause “And I don’t want to, it was a bad example.”

And yet here is Linda, a compassionate, loving person who is worried enough to call the RN, and is told to take me to the hospital. Who knows why I am moaning in my sleep, and knows that changing the block of ice under the pillow might wake me up, and knows that the pain was more severe than she had seen, and she has seen a lot. But she does this this verbal dance. Why? She said if I am ever like that again, she is calling the Ambulance, and she SHOULD have called the ambulance, and yet, there is this dance of words, of ‘fussing’ and how the sounds while sleeping didn’t HAVE to mean pain, she just knew that they did.

Is it because there is no way for someone outside to ‘know pain’? Linda says she could tell I was in unbearable pain. Except I do bear it (Except House M.D. isn't a real person), I bear it this very minute, I have borne it for a week, a month, a year while insurance ran out, while GP ran out, while tomorrow was going to be the 'time to deal with it' until todayLinda is feeding me yogurt a spoon every few minutes because I can’t move anymore, or swallow correctly. So all the ‘good time’ to go deal with it is done. I am in pain, and so a bitch. And in four hours Linda tells me three to four times she is leaving, she can’t care-take and is going out again for hours, then when I call Health Authorities to get someone to come, she takes the phone and I am ‘confused’, but later she tells me that when any care worker comes she is ‘out the door that minute’.

Without a caregiver, I can’t eat enough to take the pain pills. Without a caregiver I can’t do anything except….welll, wait in pain. And so I am scared. I am very afraid. In telling the people at Health Authorities I am ‘confused’ it means they will not come, and may not in the future. I am sure she almost as tired of this as the person in the pain, me. I am sure she hates the pain as much as I do, and what it does to me, making me bitchy and bitter, tearful and scared, a right mess.

But her leaving me while I slept for a couple hours meant I woke, I screamed, I cried, and I wailed, all alone. Her putting on her boots to leave means that I may not eat today. And that this pain may never be dialed down 30% (because the pain is never less than 50% anymore, rarely less than 60% of maximum, and there always seems to be higher and higher maximums). I don’t laugh, or smile, or joke – and I wish I did. But when agony is behind and agony is ahead and the possibility of that doubling because I said something wrong, or she just got cranky, becomes too horrible to think about. And yet she is the one who IS here. When other people come, if they come at 2:30, I sleep until 2:00 so that they don’t see the ugly mess that is the majority of hours.

I think we all wish that those with pain so bad were just ‘fussing’: but to come out and write it about them, or say it says a great deal more about OUR need to run the hell away, than about what is really going on with the other person.

No one chooses this.

Care giving, or caring: that takes more than choice, it takes the power to hold on, even when it is hell and you are it. To be all that someone has, and they happen to be half insane, and stay or go, that is a choice we will all have to face many times in our lives.

Some pictures I want to add of the kind of daily body alterations which show you it is edema (the failure of the vascular system: solved by….um, a complete vascular transplant or death – too bad there are not complete vascular transplants, eh?) and how that can look so different every 10-12 hours. So no, did not just suddenly bloat up, it is simply blood/water that cannot leave, because though I am still alive, my body isn’t able to function with the circulation system it has to my arms and legs.


Laura said...

No, it is indescribable pain. I want to help you feel better but I have no idea on how to do that.

I can understand Linda's need to get away for a little while. It hurts to be the caretaker too just in a different way.

Did your new GP run out on you too? I thought he was in palliative doctoring.

If I could take 20% of your pain away I am sure that there would be others to help out too. But I don't know how. If there is anything that I can do let me know. You know I would be there if I could.

Gentle hugs and peaceful sleep!

tinarussell said...

Hey, Beth! I have no words... that sounds so rotten.

I have a friend near me who has chronic pain. It’s hard for me to know what she goes through... I know she has to sit up straight and use only hard chairs, or else the pain in her spine becomes unbearable, and she has to go off to her room to take her pot every few hours (she has all the paperwork in order, hooray Oregon) so that she can withstand the rest of the pain. So, I have to be sensitive and remember that no she can’t snuggle on the couch with me, etc., but I’ll never know what that kind of pain feels like unless I have it myself someday. (I don’t know where I was going with that... it doesn’t have much to do with your post, sorry, I just wanted to say something intelligent about chronic pain)

I stopped watching House a while ago. I felt like the writers were using the fact that House is an asshole as a crutch (so to speak). Bleh!

Vanessa said...

I'm still here. I know I haven't posted much but I still check your blog EVERY day.

The horrible reality about life is that people are afraid... Not of death, but of living without hope. No hope to live or to help someone live. When you climb a mountain you tell someone it's "just a bit further" knowing that it'll end soon... But what if it doesn't? What if there is no end or peak in sight? What if you are driven beyond hope and still must go on? What do people say then? They don't... They run in terror from the concept that hope is a dream made up by the human mind to pacify our darkest fears.

We've both seen it and know it's true.

Anyways I just got out of the hospital again and today is my first day home so I'm pretty bitchy too. LOL Stephen says it's time for my medicine...


Diane J Standiford said...

My partner and I were discussing her swelling last night. There never seems to be a good option. She has been traumatized by a dentist/heart attack in chair, costochondritis another pain on pain--there is never an end. Pain never takes break.

Quinne said...

True that most people don't like reading or hearing about pain. Especially not in America, where pain is not, in the national mythology, supposed to exist or be real. At worst it's supposed to be the symptom of a poor attitude and something a determined "real American" should be able to overcome (vide Ehrenreich's "Bright-sided.")

We somehow had a year of media coverage in the US about health care without ever exploring the daily pain that many of the uninsured suffer. The discussion was always one or two levels removed -- about medication rather than what the medication does; about access to procedures rather than about what happens if the procedures don't occur. Then again, if we can shuffle the literal torture committed by the military under the rug, maybe it's not surprising that other pain can be equally well hidden.

I used to think that people couldn't possibly be equally crazy callous in Canada, because we all think of it as utopia just because they theoretically cover everyone. But I guess stuff pretty much sucks everywhere, when you get down to ground level.

Lorna, Bob and Liam said...

I am so sorry. So sorry for both you and Linda. No one deserves this living hell, and there are simply no adequate words to address this.

Your pain, and the complete failure of the medical establishment to deal with it, is simply a travesty. Tragedy. Nightmare. Clusterfuck. Disgrace. Nope, no adequate words.

I'm sorry for the torture you are enduring. I'm sorry for those moments when Linda can't be superhuman and be all that you need. I'm sorry that those of us who witness this are so freaking impotent to do anything BUT witness. I'm sorry for the unique and extraordinary suffering that you are each undergoing in this journey.

I can only ask this. Would going to the hospital result in anything resembling some pain management? If so, is it possible that all of the drawbacks of going there might finally be outweighed by your need for your suffering to be alleviated, even marginally?

Please know that we support you in whatever choices and actions you need to make. We hold you in our hearts. I only wish that had some real impact on your experience.

JaneB said...

Oh my dears, I wish I could magically help, or even just be there. But... I had to read this post in parts, because I am so useless at even being there to listen to what you need to say. But I DID read, and I am here, listening. And praying if that does any good. I don't know right now, but I can do it, so I do.

Such a terrible lonely road you have to take, my dear friend. I thank you again for trying to teach the world what that means, and for your friendship.

cheryl g said...

I know pain and I am unable to imagine what your pain levels are. I would give anything to be able to ease the pain for you. I am sorry the healthcare system is failing you so badly.

rachelcreative said...

Still here Elizabeth but with no words right now. I wish I knew what to say.

Baba Yaga said...

You have the gift of speaking truth even through the intolerable.

Pain beyond a certain level isn't just intolerable at first hand, but also at second: empathy's double edged. There's immense, unimaginable injustice in that (injustice to which the eyes of our whole society are defensively closed). Those at second hand have the option of escaping the intolerable - by blame, by minimising, by outright denial, just by getting out for 5 minutes or an hour or two. An option sanity sometimes can't help but take - leaving the sufferer alone, and twice alone.

Those at first hand, don't have the option. & therefore have to 'tolerate' it. & because they have to, are expected to.

I know what a bad migraine is (and it ends, after so long), and I know what certain levels of terror and despair and the frank insanity of emotional extremity (all of which, so far as I knew or had reason to believe, had no end, and only short interludes even of dulling) are. That's the extent of my imagination. It's a pretty large extent, for most people, even though I frankly censor some of the recollection.

I can't pretend I'm truly open to your pain, any more than another - not unless I had the power to prescribe, to alleviate it. (Not always even to mine.) I can come and read, and that way be as open to it as I know how. I can wish that I could ease it, or understood the system you're fighting well enough to send a few well-directed letters. Or that I could come and sit with you for long enough to let Linda escape, and recover some of the sanity which dwindles even through second-hand pain, when it's so extreme.

Those are easy, ish - wishing, most of all. Doable. Living it is so far the other side of easy that there is no name for it. & the injustice of living it while others run from even the shadow of it is immense.

There, that's a long-winded way of saying that I'm trying to understand, that I do understand some part - the violence of others' inability to withstand *your* pain -, and that I know and regret that it's not enough.

Elizabeth McClung said...

The comments were very helpful.

Today, in order to stretch the medication, I reduced my pain med to 35% of the dose recommended for me. Last night it took so long to get my jaw unclenched from biting down from the pain. But it is what it is.

Vanessa: your comments about hope were right on - so much has happened that is bad, that when Linda talked today about applying for disability living, it means the big three: apartment, food, and medicine were all in turmoil - to fight to stand the noise so that I can sleep and rest in my own apartment possibly gone too.

The idea of only pain, less and less meds and instability with no hope at all, it is crushing. Linda said that she 'can't see us doing Sakura-con' - 2 days across the water from us five to six months away - if that is so, what is to get me though the next 5 to 6 days, or weeks? I refute that and hold onto hope, though pain makes it hard to see much (like staring at the road from one inch away instead of at the horizon) - but a very useful idea, which helped me hold on today.

Laura: I can't be the person I need to be for Linda, and more is dumped on her, more caregiving that I was trying to do for myself but simply cannot anymore. I know she has to go away, but in pain, and insane, like a child, I know only that it hurts and I am alone.

The GP wants the file, then likely tests, and that is IF they stay, about 1/3 run at the point they see the file. I wouldn't ask anyone to take away 20% of my pain, since being hit by two wardrobes was what life was like BEFORE I got ill. Why make my friends have pain lines and little laughter too?

Tina: I don't know if what I have is chronic pain or culminating pain - sort of like the pain when cancer takes over, it isn't steady, it grows and grows, and grows - my only fear that stops me from doing a 'liver failure' suicide is the idea that could somehow be more painful (I didn't think things could, but then I have been in more pain since I thought that, so yeah, scared - either way, for whomever, pain sucks).

Diana: 'Pain never takes a break' - so true in summing it up, even if you want to surrender, there isn't a way to do that. I wonder if a tin cup and buying street drugs really IS the Canadian Medical systems way to deal with it (I mean, I told the GP my pain levels and appointment in 3 weeks - that isn't dealing with the issue - I wonder if having a car parked on his leg for three weeks would be acceptable to him?).

Elizabeth McClung said...

Quinne: Oh, I thought like in Pilgrim's Progress, that it was through pain, that the manifest destiny appears. Of course, historically that has been other ethnic groups pain. No, talking about riots and beat downs, and whipping isn't 'popular' - they have the annual comment about people dying off from the civil war, but don't show on the 'Morning Program' the black Americans left with whip marks on their back from being property.

Once the pictures of the torture in the prison were released and then just sort of absorbed into culture - showed up in popular TV from cop shows to the torture favorite "24" then I knew that the 'us' and 'other'/'them' was never going to allow for an empathy. Sadly it only seems to estrange the different people in a single country, whether by race (tortured and killed muslim is okay, white female college student is bad), or economic group, or other minority power status.

Canadians are far more callous and always have been than Americans. We don't follow Life, Liberty or Pursuit of Happiness but 'Peace, Order, and Good Government' - so if I have to die in the gutter, lose my life, or have Native prisoners in jail that DNA have PROVED innocent so that there is 'peace and order' for the majority, then that is what happens. We even screwed the Black freed slaves, offering them a better life and citizenship, 800+ came to Victoria, only to have the Gold Rush fill the town soon with anglos who were anti-black. The need for 'Peace and Order' meant that they were not given citizen ship and instead collected and shipped off to the far tip of one of the inner passage islands - Most simply left, desperate to escape back to an openly racist post civil war America than stay.

That is the 'social net' - some it catches, the rest simply fall through.

Liam, Bob and Lorna: Linda hoped that the pain would subside a bit after rest. Some, not much. But to be waiting for hours on a Friday night, maybe 4-6 hours to be told to 'go see your GP about pain' is pretty much par for the hospital experience. As long as I wasn't having an EMERGENT crisis (like a heart attack) it is NOT THE INCH of the hospital - so off to the GP's who have over 1,000 people on a waiting list to become a patient.

Jane B: Thankfully not so lonely - I wanted to respond as I have a sore throat so may be getting a fever as well soon, I guess my immune system is gone and gone.

Cheryl: You know pain, so you know what it means to have pain without future of ease and how that can affect - yeah, sucks.

RachelCreative: to bed!

Jaimie said...

Hi Beth,

I don't often comment but I figured I can't really do anything to help you. So a little comment just to let you know that another person out there is thinking of you and wishing you weren't in so much pain.

SharonMV said...

Dear Beth,
Have you asked to try Cymbalta? it helps for pain for some, similar to Lyrica. Since it is not so trendy, maybe there are samples available.
We can't afford to pay for my meds anymore - even with insurance the co-pays are several hundred a month. But lucky for me the pain meds are generic & have a low co-pay. just some of the ones I need to treat the potential life -threatening diseases cost us $50 or more per month.

I wish I could help. It seems like the docs in Canada are afraid to prescribe the more powerful pain meds.

I'm so sorry that you wake up alone & in pain - unable to take care of yourself. It must be so frightening and cause great emotional pain on top of the physical suffering. If you wake up late at night, you can at least think of me. I am almost always awake until 3:30 - 4:00. I have pain meds, but as you know that only takes away some of the pain (tolerable for me as I wish it could be for you), and other symptoms keep me up. So I am here and I love you. I know that doesn't help much. but maybe it's a thread you can hold on to.


Neil said...

I've known the pain of migraines, kidney biopsy, strained ligaments, torn knee cartilage -not all at the same time, thank the gods.

But what you're describing is totally beyond what I can imagine. I wish I could help take some of the pain away; I wish the health system would take you on and actually TREAT you.

I saw an Internet story recently that said the formerly standard examination by doctors is going away; they listen to your heart and breathing through your shirt now. Someone was quoted as joking about how if you go into an emergency room with a missing finger, they'll want blood tests, MRI, CT scan, and x-rays before they'll even look at the finger.

Unfortunately, that seems to be true in your case. Never mind the bloody file; TREAT THE PATIENT!

I'm frustrated on your behalf, and that's probably not even 1 percent of your frustration level.

Praying hard for some sort of help or hope for you, dear Beth.

Love and zen hugs,

wendryn said...

I'm so sorry that it's gotten so hard, so painful. I'm sorry on behalf of both of you, because living in pain and taking care of someone you love who is in pain are both awful places to be.

I hope something improves soon. I don't know what more I can say or do, but I'm still here, still reading, and still thinking of you and writing. *hugs* I wish there were more I could do.