Hate to have to tell you this but....

All of this has happened before

and all of this will happen again

I am borrowing again from "The Princess in the Tower" because I can no longer call forth any sort of meaningful language from the depths of this sink hole in which I have been buried alive.  Thank you, Princess in the Tower for clarifying what I can't.

THIS IS WHAT CHRONIC PAIN SUFFERERS WANT YOU TO KNOW

September 9, 2016 by Princess 

Chronic pain changes everything in life, most entirely invisible to outsiders. Many people do not seem to understand chronic pain or just how extensive its effects are, how exhausting always being in pain is, how displacing and uncertain, nor how hard that pain makes it to concentrate and think.

They cannot see that sufferers have attempted numerous treatments, approaches and alternative therapies to heal and manage that pain, and know what therapies have worked or not worked for them. While the depth of loss and longing for our lives before it began becomes as constant as the pain is.

Life with chronic illness and pain is so vastly different to that of healthy people. Every single act must be weighed against the pain, rest, recovery, and pacing is a constant evaluation too. There are so many considerations healthy people do not have, alongside symptoms themselves, the attitude of others, as well as our own complex inner feelings.

The chronic pain patient wants those around them to empathise with their situation rather than be sympathetic, to have understanding, not pity, though sadly, understanding can be extremely rare. Not that there aren’t compassionate souls who support us but because the ‘pain experience’ is hard to grasp.

In the spirit of informing those who wish to understand, here are some things that can enable you to do just that to help people who suffer from, often debilitating, chronic pain:

For those living with chronic pain, one of the greatest challenges is in dealing with attitudes, from our own attitude towards the pain and our personal situation to those from family, friends and sometimes even complete strangers. Our attitude is important as it deeply influences the efficiency of the coping strategies which evolve and determine our ability to function well in spite of pain.

Yet for almost everyone whose lives have been so drastically altered by chronic pain, the attitudes of others can be an ongoing challenge. Most people have experienced pain at some time in their lives and that pain would have likely been caused by an obvious event or condition, but even if it was intense pain, would have abated and eventually settled.This experience will determine their attitude towards pain but unless the pain was prolonged for at least a few months or more they will have an inadequate idea or appreciation of what it is to live with chronic pain, and no matter how empathic, will not truly grasp the full, unimaginable nature of the situation, much less what it is to never know if the pain will ever end.

Worse still, people with the regular aches and pains of ageing assume that they know what it is like but unless the pain is severe enough to completely dismantle the person’s life, it is far from the same experience, physiologically or emotionally.

#ChronicPain means we use coping strategies that do not reflect the real level of pain we feel.

Chronic Pain Sufferers Talk Differently from Those Not in Pain

Chronic pain sufferers often talk differently from those free of constant pain, many people forget that after many years of pain, we just want to appear normal — so we modify our behaviour, and avoid letting people see just how much pain we are really in.

A numeric pain scale is used as a quantitative measure to identify pain intensity for medical professionals, with description of pain being on a scale from 1 to 10 (1 being “no pain at all” and 10, the “worst pain ever felt”).

After many years of chronic pain and despite it often worsening, this scale may change and shift, instead being more reflective of individual tolerance to ongoing pain, especially in progressive conditions; what was once an “8” is now a “6” for instance — people can only measure pain against the most pain they have experienced.

Yet as for most this was acute pain, a different physiological process, and even if severe, still brief when compared to constant pain of CRPS for example or that of central sensitisation, which occurs in many complex pain conditions including Fibromyalgia, making such subjective understanding by those without chronic pain all the more difficult.

Never assume the chronic pain patient is not experiencing pain when they say that they are fine.

Hiding the pain due to lack of understanding in others, protecting others (from feeling uneasy or helpless, after all, no one likes seeing someone they care for in pain), or just to fit in is a natural response to ongoing pain. Accept that words are often inadequate to articulate how the chronic pain sufferer is feeling.

Recall a time when you were in pain, then multiply the intensity and try to imagine that pain is present twenty-four hours a day, every day, without any relief in sight. It’s hard to find the words for that kind of pain or experience.

Never assume the chronic pain patient is not experiencing pain when they say that they are fine

Respect the Chronic Pain Sufferer’s Physical Limitations

With chronic pain and invisible illness the uncertain nature of our fluctuating symptoms is as confusing to us as patients as it is those around us. Our mobility, pain levels and ability to cope with movement can be erratic, unpredictable, and frustrating for all involved.

Every pain patient does not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. This is one of the hardest and most frustrating components of chronic pain. Using pacing for pain management is paramount but even with the most meticulous planning, sometimes the pain flares or is just too fervent.

Being able to stand up for three minutes doesn’t necessarily mean we can stand up for twenty minutes, or an hour, or give you a repeat performance.

Just because we managed to sit up for an hour yesterday, does not mean we are able to do the same today.

Understand the Difference Between Happy & Healthy

When you have a nasty bug or an injury that suddenly hampers your life, you may feel frustrated and miserable. Chronic pain patients have experienced pain from 6 months to many years, even decades, without a break. That changes you. It changes how you respond to the pain, as well as how much and how well you hide it.

Pain has caused us to adopt coping strategies that do not necessarily reflect the real level of pain we are feeling. When we see our loved ones, we are happy. Happy is not the same as healthy but we choose to hide our pain and suffering, for others as well as ourselves. Sadly we are often misjudged for it, especially when they rarely see how excruciating and debilitating the consequences are afterwards.

Many struggle to believe you can be in severe pain if you are happy, laughing or simply not voicing the pain in the same way someone without chronic pain would expect, but voicing it does nothing for the pain, in fact focusing on it can make it worse, and only serves to make others feel uncomfortable. Laughter is also one of the most enjoyable ways to manage it and cope.

Chronic pain and illness has already taken away so much, stripping our lives to their barest bones. Respect that the person who is in pain is trying their best. Associating illness with exclusively feeling unhappy or thinking it impossible to be in pain and still find joy is a great source of misunderstanding.

When someone living with chronic pain says they are in pain—they are in pain. They are merely coping, sounding happy and trying to look normal.

We’re already hiding immense pain, when it flares up, it becomes unimaginable.

Be Patient

If you’re impatient or want someone with pain to “just get on with it” you risk laying a guilt trip on a person who is already suffering with pain, undermining their determination to cope.

They likely have the will to go out or engage in another activity but have neither the strength nor the coping capacity as a result of severe pain. A chronic pain patient may need to cancel a commitment at the last minute—please do not take it personally.

Instead, always remember how blessed you are to be physically able to walk, sit, stand, run, dance and do all the things that you can do and how sad the patient is at having to cancel [again] due to severe pain, illness and disability.

It’s important to remember that the pain is in charge, not your loved-one or associate. While you could get annoyed, it shows a complete lack of understanding of chronic pain and all they endure on a moment to moment basis.

Always be understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take medication RIGHT NOW. It means that they do have no choice but to do it right now. Chronic pain does not forgive or wait for anyone. We’re already hiding immense pain, when it flares up, it becomes unimaginable.

“#ChronicPain does not forgive or wait for anyone.”

Chronic Pain Changes How the Body Processes Pain

“Pain itself often modifies the way the central nervous system works, so that a patient actually becomes more sensitive and gets more pain with less provocation. That sensitization is called “central sensitization” because it involves changes in the central nervous system (CNS) in particular — the brain and the spinal cord,” says Science writer Paul Ingraham of PainScience.com.

“Sensitized patients are not only more sensitive to things that should hurt, but also to ordinary touch and pressure as well, which obviously should not hurt. Their pain also “echoes,” fading more slowly than in other people. This neurological meltdown is such a consistent complication of other painful problems that some researchers now believe central sensitization is actually a major common denominator in most difficult pain problems.”

The changes of central sensitization occur after repeated experiences with pain (the brain and CNS is activated and sensitized by repeated stimuli to become more excitable). Research shows that repeated exposure to a painful stimulus will change pain threshold and result in a stronger pain response from less provocation.

Noise, Crowds and Other Stimuli Make Pain Skyrocket

Another consequence of chronic pain altering how we process pain is that noise, crowds and other stimuli cause intense increases in its severity. This is also so hard to explain, especially when in a crowd or overstimulating situation and another source of misunderstanding.

Sound causes pain but when that becomes noise, it intensifies. When then fused with all the other stimuli from a crowd, it opens the pain gates and overstimulates our nervous systems, making the pain skyrocket, in turn exacerbating brain fog, so we’re left even less able to explain… or escape it. It can become so complicated, we may avoid it entirely, no matter how rare or deeply we long to go out.

#ChronicPain sufferers talk differently from those free of constant pain.

Be Helpful

Much as holding onto our independence is so dear to us, frequently we need support in more obvious ways. Living with chronic pain means we depend on healthy people to assist us or visit when we’re too pained-up and sick to leave our home.

Without some degree of support, so much is left undone, and often is, for much like our pain and symptoms, this support can fluctuate. If you care about someone living with pain, want to help but are unsure how, be specific.

A general “let me know if you need anything” is obviously compassionate and deeply appreciated but tends to result in our not accepting it, being too proud or even feeling shame for needing this help. But a specific question, like: “I’m going to the supermarket, can I pick something up for you?” is essentially the same offer but one we’re more likely to accept.

It also doesn’t leave us feeling indebted in ways we cannot repay. We may need help with shopping, cooking, cleaning, getting to the doctor or collecting medication. Some may need help with their children. Changing bed sheets for instance is an immense or impossible task in pain but one so deeply appreciated.

You can also crucially help loved ones so isolated by chronic illness and pain stay tethered the aspects of life that they miss and desperately want to be a part of again. You can be an immensely healing link to the normalcy of life and support them.

Being able to talk about the pain openly with others is important — it’s such an all-encompassing part of our lives — though equally not talking about it or defining us exclusively by it is too and it helps us feel less isolated or distanced by the pain, offering a little taste of normal, which is after all what so many living with chronic pain and complex illness truly long for.

Experimenting with various cannabis strains and ways to ingest

Feeling better.....? or at least less horrible...

So far I've tried a sampling of different indica strains, not liking the smoking at all.  But for some reason, after the kidney infection cleared up, the pounding decreased so much that I can handle THC now.  Normally THC only amplifies the pounding and pain and distress.  But since the kidney infection and subsequent antibiotics and a lot of IV fluids, it's not having the same affect.  In fact, it is actually letting me sleep, or at least relax.  I've had about three nights of total insomnia like this, after having taken a bit of the CBN oil - about the size equivalent of 2 grains of rice, 90 mg nortriptyline, and, depending on how much I've had to eat, 1 - 3 mg clonazepam, and still not sleeping at all.  I'll take a 7.5 mg zopiclone, lie there and listen to my audible books for another hour, take 30 mg temazepam, lie there another hour, take another zopiclone, and maybe fall asleep before 6 a.m.  I don't feel worse for wear though after these nearly sleepless nights.  What I am grateful for are drugs!  Rev. D Kaye Patrick of the Centre for Spiritual Awareness once practically jumped all over me for saying I hated taking drugs.... "DON'T YOU DARE HATE ANYTHING YOU'RE PUTTING INTO YOUR BODY!" she accentuated with pure conviction.  "If it helps, be grateful".  So I was.  I am.

After about three days here, I really was feeling much less awful.  But over the four weeks I've been here, it has returned, though not nearly so overwhelming.  Today I can barely move without gasping for breath over the knifing pain in the right SI joint.  Pain sure does rip the life right out of you.  You count seconds, anything for distraction.  I am grateful not only for drugs that sort of work, but for online streaming.  Sooooooo grateful!

Misfit, Apathy and Survival

                                       

myriad voices

      inside the great crystal ball before me

cannot penetrate the surface

distorted faces pressed

grotesque against the convex pane

groping fingers

death-white with constant despair

either let me out

or let them in

This is how it is.  You find yourself encased in an impenetrable bubble.  Nothing and no one can get in and you can't get out.  Your voice has long ago ceased to be heard.  Even if you still have a voice, you don't know what to beg for, or who to beg.  Friends disappear.  Family too.  Husbands get rid of you.  Children don't understand you.  You begin to think you're dead, a ghost, because this... THIS.... this agony cannot possibly be real.  

It's one thing for someone to understand, or have compassion regarding your personal agony, your exhaustion, and the inevitable anxiety that being sick leaves for you to muck through.  But does anyone really get it? No.  And you wouldn't want them to.  This thing makes you feel like you're floating about in space without even an orbit to follow. Nothing makes sense.  You can't breathe... or wish you couldn't.  

I refer you to another blog, to someone who can describe it.  Those of us inside this bubble cannot begin to try to explain.  We haven't the energy, thoughts don't come out in any distinguishable language, and the anxiety forces apathy.  Apathy is our survival mechanism. And I can tell you one thing for sure... that survival instinct is a bitch. 

Read this:

http://princessinthetower.org/the-isolating-loneliness-of-chronic-pain-invisible-illness/

Welcome Back, Exhaustion!

I'm way too exhausted again.  My back is too buggered up.  I was 24 years old when, standing in my kitchen, holding onto the counter and stretching out my back, I thought to myself, "Well, I guess I finally have to admit I have a back problem".   Finally.  So I guess I'd not been admitting it up to that point.  Age 24.  Finally.  Maybe that is my problem.  I should never have admitted it.  What does it mean to "admit"?  It seems to mean that there is something to deny.  Or to allow in.  To allow someone in.  Or something.  Did I admit my pain that day?  Did I give it sanctuary, admission to the halls of Deanna?  Did I say "okay, you can come right on in and stay"?  The literature I read on how to endure torture says you have to make pain your friend because it's all you've got left.  I already said that in my book, "Who Will Feed the Chickens?"  I'm way ahead of you, Torture.  I've been BFFs with Pain for at least two decades.

I am remembering 1992. David and I had only been married for four years and I was still ecstatic and in love.  That Spring I got it into my head that we should go to Alaska and have a Bed and Breakfast so we called Edith, my mother-in-law who scrambled to get onto the next bus for Fox Creek to look after our three darlings, and we, being adventurous and young, thought we'd camp along the way.  It was April.  We thought we'd camp. Yes. April in Alaska.  Camping.  So we packed the camping gear and northward we drove.  I think we pulled into Fort Nelson around 2:00 a.m., found a church parking lot, climbed into the back of the Jimmy with my dead father-in-law's army sleeping bag and tried to sleep. In minus 16C.  Brrrrr.   Close to the U.S. border we found a "motel", basically a row of mobile camp residences because everywhere we'd looked to set up the tent would have meant digging into the snow about four feet.  I was sick that night.  Back then it seemed that I got nauseous every time I needed to have a bowel movement.  Once it happened, I'd be fine.  I discovered that traveling is constipating so after that I took my  Herbal Fiber Blend twice a day.  This was the only product that ever did anything beneficial for me.  Not anymore, of course.  That was 25 years ago.  We got into the creaky bed with it's thin covers and straight away half the floor caved in.  So we pulled the meager blankets off the bed, grabbed the army sleeping bag and made a makeshift bed on what was left of the floor.

  80,000 signs at Fort Nelson

Let me tell you - that trip through northern BC was lonely.  If you're heading that way, carry a couple of gas cans because there is nothing for hundreds of kilometers.  It is beautiful though.  The Yukon Territory though - now that made me want to stop and build a cabin, forget the kids, and never look back.  The utter desolation is what drew me in, like the mesmerising gaze into fire flames.

Can't remember which passageway this story was racing down.  I've forgotten.  I remember lots about 1992.  Alaska, Washington and introducing my husband and daughter to my parents for the first time, getting together with my childhood friend, Robbin, with whom I fell in lust just because she was the kind of friend who "got" me, who wanted to do the things I liked to do - camping, hiking, quading, laughing, building stuff, even hunting, not going out for coffee with the ladies.  Yuck.  Robbin is another series of passageways.  Where are you now, Robbin?  Maybe the point is, I was constantly seeking distraction by then. Before that I had tried to rationalize away the discomfort, pain and fatigue on just having a baby, or being pregnant, then having another baby, or being out of shape, not exercising enough, not eating right, always thinking I was eating too much... and by age 19 I was 110 pounds and had skin for breasts, with downward pointing nipples.  So by 1992 when Abby was three and I had had a tubal ligation and would have a hysterectomy within the year, I was seeking anything for relief.  I would fast for a few days, then add peas, then rice, but by rice I was already feeling poisoned so I went back to peas and still felt poisoned.  I only felt okay if I didn't eat.  I spent my piano teaching money on supplements that only gave me expensive urine and nothing else.  I bulked up on vitamins and minerals in quantities the Canada Food Guide would have considered suicide.  But I did feel something, I think.  I remember saying to Robbin, "I don't know if I have any more energy, but I don't seem to need as much sleep".  What the hell did that mean???  Great, so now I'm awake more hours of the day to feel how unenergized I am. Oh!  Now I remember!  I just don't remember why.... I was thinking about David's transfer to the Crossfield plant in southern Alberta.  Maybe if I keep yabbering on I'll eventually remember.

So in August, after returning from Washington, I took the kids and went to stay with David's mom and looked for a home for us, out of the city, closer to Crossfield, but close enough to Calgary that I could attend classes at the University of Calgary.  Since I was late in registering, I had to stand in line, all day... all day.  Benji came with me.  He was my gopher boy.  I kept sending him to get fudgsicles for us. Sugar. I was learning to live on sugar.  I sat on the corridor floor, leaning against the wall, getting up only to plop down again when the line moved ahead a foot.  All day!  I did get registered in three classes.  But David's pancreas had other plans.  He was tired, sometimes a bit nauseous, always thirsty, alway peeing.  He was quickly diagnosed with diabetes which meant he could no long work shift work which meant no Crossfield transfer, which meant no move to Calgary which meant no university for me.  Instead we bought the farm at Little Smoky, a quarter section with a log home, garage, machinery, an acre of raspberries, 1/2 acres of strawberries, three rows of tobacco, a field and an enchanting forest to roam about it, usually naked.  Sometime down this passageway I mean to find the day I drove to Grande Prairie to see about getting into their nursing program.  Remind me later...

So we moved while my husband was still in the hospital getting used to needles and figuring out the units of insulin he'd need and how often.  I loved the farm.  I loved it!  But overnight something happened.  I became so fatigued, not just after eating, or "post prandial fatigue and hypotension" as is the medical term and typed in my medical documents, and couldn't get past 9:00 a.m.  Was it mold in the crawl space under the floor?  Was it all the work involved in moving?  I remember curling up on the sofa in the evening, listening to the fire crackle in the tiny wood stove that I would be getting up to stock a couple of times every night leading to less sleep and more fatigue.  I remember gazing at the walls - logs with cracks and dust and the hues of nature, and feeling astounded at my good fortune... and yet feeling empty, like, "what now"?

David came home, had three months off work because of his diabetes, and spent all day every day outside playing on his dirt farm.  I have to admit, when I could get up and go out with him we had a blast!  But I still had school on my mind.  I looked at Valleyview.  They had a course for secretarial/reception.  Blah.  I drove to Grande Prairie to check out the college, knowing full well I couldn't handle nursing, or rather, I had a vomit phobia.  And my sister Robyn, a nurse, used to come to dinner with vomit on her uniform and not bother changing.  I remember driving home, not stopping for the hour and a half drive, just so I could get home and into bed.  I pulled in, turned off the ignition and just sat there in the Jimmy, aching everywhere, exhausted beyond belief.  Eventually David came out to help me in.  I took 1/4 of a zopiclone and fell asleep on the sofa.  I was 28 then.

David's brother Greg came up from Calgary to help build us a porch.  I was so tired I would get the kids off to school and curl up in a chair with my beagle, "Suza".  I could hear the brothers talking as they worked.  "Just divorce her" Greg told him when David mentioned that I seemed depressed.  Just divorce her.  Eventually he did.

I learned to get through the days by not eating, or eating just a spoonful here and there.  My favorite was mashed carrots and turnips with butter.  But even that much would feel like poison.  My "narcoleptic" sleeps started happening every morning at 10:30 and every afternoon about 2:30.  I didn't understand them.  They scared me.  They always had scared me.  Every day I would become so lethargic and exhausted, I'd fall into a dream sleep, but awake at the same time, paralyzed though, unable to wake myself from the auditory dreams.  My eyes would be open so I could watch the clock, but I couldn't move, except the rare moment when I'd emerge from the sleep just long enough to throw myself onto the floor to wake myself up.  Those sleeps only last a few seconds up to five minutes.  Sometimes I would then go into a real sleep, but most of the time I'd get up, shake myself awake, all discombobulated.  But by 1993 I had begun to realize these sleeps were extremely refreshing and throughout the following years, I learned to control them - another passageway that includes "angels" in the forms of young, beautiful boys who would come get into bed with me and comfort me.  I always understood they were projections of my own mind trying to console myself.  Nevertheless, they were pretty cool!  Remind me to come back to the angels later - there's more.

Point is, by then I knew something was wrong.  I thought the hysterectomy would fix my sacro-lumbar pain.  It didn't.  In fact, I never really recovered from that surgery.  And I never had any post-surgery help either.  Other ladies got casseroles brought to them by caring neighbors.  Not me.  I still struggled to my feet, leaned on the counters to make meals for my little family, got stuck trying to go for walks when the bowel pain stole my breath away and there I'd be, in my pink bathrobe, holding onto the fence, too far from the house, needing to go.... fortunately we had a funky out house.... so two weeks after my hysterectomy I had my first, hard, oh so painful, bowel movement in an out house behind the garage.  After that I kept it stocked with toilet paper.

Back to the present.  I've been waiting to feel good enough to drive into Onoway to put some documents in the mail - receipts for AISH for reimbursement, Canadian citizenship documents, divorce documents that state David would be giving me $500/month.  It's been 12 years.  12 years of back pay would build me a nice little yurt and a piece of property.  It's unlikely.  But I'm told each spouse should be able to maintain the same standard of living as they did during the marriage.  Our divorce judgment states I am self-sustaining at $8400/year.  Really?  Did a judge actually read that and sign off on it?  And phone calls.  I have to feel good enough to make a phone call, phone calls I needed to make years ago but haven't felt good enough yet.  A phone call is a major project.   Should I take 16 more mgs of hydromorphone?  Should I go smoke the rest of my indica Purple God?  It won't help.  Oh, but that reminds me, I do have to order some more CBN oil.  From what I understand, CBN is a by product of aging marijuana.  It sure helps for sleep.  I ran out my first week here.  That first week was my best in a very long time.  So at $100/syringe which is about 1 gram, I can feel a little less horrible.  Cross my fingers hope to die stick a needle in my eye.

Who do I beg for relief?  And what do I beg for?  It's not right that I'm still here, still breathing.  Two months ago a nurse in an Ottawa hospital told my sister that "death was imminent".  Not sure why she said that.  Alas, had she only been correct in her assessment!

Signing off... must try to wake up.  Take Paco for a walk.  He's farting.  He needs a poop.  My head hurts.  My face hurts. My hair hurts.

Weren't we cute?  I think so!  I love that family.  My husband doesn't remember me though.  Neither does he seem to remember his children.   I need to send him the box of photo albums.  But then again... why....?