I have dozens of posts I didn't publish.  I didn't get better.  I got worse until I found a decent place to stay for awhile.  But I've been realizing for some time now that my life is almost over, and without ever knowing what it feels like to feel good.  And I've had to be ok with that because that's just how it is.  I may exit.  I may not have the courage and instead  just let myself fall back into dementia. 

Benji, somehow, come and get me and take me home. 

Ciao mundo maravilloso!

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....?

David Sr's' Hoarding House and David Jr's Funeral

In 2003 when I'd been forced out of my own home by my in-laws, Abby and I moved to Edmonton.  For three months we stayed with my good friend, Randy..... he's not a good friend anymore, funny thing.... but at least he was honest.  He told me that he couldn't stand feeling helpless as he'd watch me writhing on my mat on the floor so he decided since he couldn't save me, he could at least save himself.  I miss Randy.  I miss all the Randys I've ever known.  So maybe it's not him that I miss but rather his Randy-ness.  There is such a labyrinth  of stories to tell, like convoluted passageways leading in a bazillion different directions, but as Don Maclean sang, "all roads lead to where I stand".  So much for free will.  So is there a passageway that might have led to a healthy Deanna?  How far would that path have to back track to skip the event, the thought, the emotion, the virus, the DNA segment that caused this smoldering wreckage of humanity that is ME? As I said, so many narratives inside narratives.... back to 2003....  I was working in the fine arts department at the University of Alberta as a life model and met a 63 year old man in the fine arts office.  We became friends.  You know what?  I'm too  tired and sore today to tell this story.  So I'm going to skip from 2003 to May, 2017 when David sent me a text to let me know his adopted son, also David, who had cystic fibrosis, had finally succumbed to the inevitable.  I call David Sr's house "David's Hoarding House".

This photo hardly
does the hoarding house
justice. The black garbage bags are full of cat urine clumps and cat feces.  In this dark room full of poop is a caged pigeon.  After the funeral I encouraged David Sr to set it free.... the timing was perfect.  His son dies, set bird free.

 I don't know how many cats he keeps in various rooms around the house.  He cleans the many litter boxes, removes the clumps of cat urine and feces, puts it in plastic bags and piles the bags into several mountains around the house.  I went to stay with him during this very busy and difficult week.  I tried to double bag some of the litter and at least get it outside.  Underneath the piles, the cat urine had eaten through the ceramic tiles.  Finally I went out and bought a couple scented candles, opened the window in the bedroom where I stayed.  I am presuming it was the noxious fumes that made me faint a few times.  Each time I picked myself up off whatever pile of boxes, a ladder, a tv in the hall, cat barf, cat hair, cat litter, etc, along with the blood pouring from a gash on my head.  As I said, I'm too exhausted to recount this story today - I'm sitting outside on the deck - it's hot and humid and the ashes from the neighbor's burning barrel are floating around, settling into the keys on my laptop and clogging up my brain.  David Jr was not into religion of any kind.  David Sr is a Mormon.  So I have to admit there was a bit of pissed offedness welling up inside me as I sat with David Jr's friends and family listening to how he was now enjoying the company of all his previously deceased relatives, heros, friends.

As I try to stumble down this passageway, I'm realizing I need to go back to the RV, take a pill, maybe smoke something, go back to sleep for awhile....  Basically, I went to a funeral.  Funerals make me giggle.  As I sat uncomfortably on that church pew, I watched David Jr's birth father who seemed to be a universe away from his comfort zone, so during the reception I sought him out, spoke with him for awhile and now I'm trying to find him on Facebook.  He just seemed like someone I want to know.  No, this isn't the story I meant to tell.  I'm going to bed.  But first, here's my pillow the morning after the fainting/head gashing.

Anyway.... back to bed.... I'll try to rewrite this later when I'm not so hot and grumpy and hurty and breathing in the neighbor's burnt trash.  I'm too lazy to even bother proofreading anymore.  No apologies.  May as well be real.

Except it's not ME

Myalgic encephalomyelitis is secondary, as is lupus and Sjogren's and the myriad other maladies for which I am providing sanctuary.  My own thoughts are that homo sapiens is just a fragile species.  We've only been around for about 150,000 years.  The Neanderthals hung around for about 400,000 years in the same form till we ran them right off the earth after interbreeding with them.  According to the company "23andme", I have about 2.5% Neanderthal DNA. Dinosaurs only hung out here for about 175 million years.  But the shrew - a truly remarkable mammal - survived the Cretaceous-Paleogene extinction, and survives today in various forms.  We evolved from this tiny mammal.  But we homo sapiens haven't been around very long.  And we now subsist on power grids and technology.  How long can that last?  We are a frail species indeed.  We can no longer adapt to our environment.  We force our environment to work for us.  Nature is a force not to be reckoned with.  50,000 years ago, I would have been left for the lions.  The group's safety and continued survival depended on leaving the weakest of us behind.  I am the poster child for weak and frail.  So why can't I die? Because there are no hungry saber tooth tigers where I live.  And I use the term, "where I live" loosely.  I'm alive.  And at present I'm lying in a cold RV.  Therefore I am living in an RV.  Last week I lived in a hotel.  And for one night I lived at David's Hoarding House but the stench and filth was too much so I went to Dawn's, knowing what a mistake it would be... and it was.  But for two nights I lived at Dawn's.  Now I live in an RV beside a lake that is drying up.  I never live anywhere long enough to put in a change of address.

Back to ME being secondary - this Thing is in my spine, and has been since the moment I hit the concrete on the ground floor of Stoltzfus' barn.  But in 40 years, with socialized health care, do you think I could get anyone to take a look at my spine?  We've done MRIs and CTs and motility tests and barium X-rays and tilt table tests and everything but a scan of my entire spine.  

I am so tired. So so tired.

My Sister

My sister

Her hair is blonde, wavy and soft
Well, I don't remember that -
I always thought it was brown
Dark brown
And long
And straight
(every now and then we bring out the envelope that contains her cut off pony tails from when she was 12)


Suave
Gracious
Enchanting she is.
I know
By the bunches of red roses
Flooding brandy glasses on both speakers.

She sings to me
The songs we used to sing
When I was ten
In that youthful world
Way back when…

She breaks my heart
With Vincent and Killing Me Softly
Till I am drunk
With admiration and longing
To be
Just
Like
Her.

Her name on the screen
In big letters and lights
For ALL THE CITY’S PLEASURE.

Oh, it’s no wonder
She lost count
Of all her beauty-seeking lovers.

Nurtured
In a life of horse dust and
Kittens and
Wheat fields and
Midnight crullers at Robin’s,

Yet exposed
To bloody fights
In the ring
And afterward it is appropriate to stand around tinkling the ice in our plastic cups,
A breed of existence I had not known before.

That’s my sister
The songstress
Up there playing with switches and dials and equalizer levels
And that’s Karm over there
He comes every night just to gaze at her
As I do.

Bitter cold Winnipeg
It bites and gnaws, unforgiving.
So let’s just stay at home
Tonight
And watch old Bogart films
On Roblin Boulevard
Where the ghost walks nightly, condemned eternally

What?! You mean you never heard of that?!

Rosebud, Roblin Blvd, Meryl and Marshall, horses and bloody boxing matches

I was 17 in this photo, with my kitten, Rosebud.  I know, I look 12, right?  I kept looking 12 till I hit 50, The era this photo brings from 36 earth years away, is exhaustion and being unable to sit up comfortably.  I remember having terrible menstruation pain and nausea, and bleeding half to death for about ten days each month.  I remember Meryl teaching me to eat once a day, whether it was spaghetti from a generic can or left-over hot fudge sauce from last night's hot fudge sauce with a little ice cream under it.  Sometimes we made cookie dough and ate most of the dough.  We went to the Fit Stop during the day, a gym where Meryl and her husband Marshall Quelch had free passes because, just by being themselves, they brought in  a great deal of business.  Marshall was a fairly famous athlete/football player and Judo champion.  The guy - my big brother - was/is amazing, even now at age 80.  His influence on my tender, naive 17 years is still apparent today.  Anyway, I digress, but with good reason - Marshall, living legend, will always be my big brother and I will always admire and love him.

 In this photo I am wearing Marshall's scruffy old bathrobe that wrapped around me about three times.  This ragged bathrobe is holds a great deal of emotional significance and I will no doubt get to that story another time.  It is probably morning - 11;00 a.m. was morning to me, although I could hear Meryl in the basement building stuff by 7:30 a.m.  She never wore out. Sometimes I would go to work with her - to whichever gig she was playing that week.  At only 17, I was illegal, but never got ID'ed.  I guess with make up, and wearing Meryl's homemade, but classy clothing   and high heels, I looked older than 12, and even may have passed for 18.  But considering Meryl was the entertainment, no one ever asked.  So between about 9 p.m. and 1 a.m. I sat and gazed at my sister, barely able to breathe in my new life of freedom - a strange combination of a hundred year old farmhouse with a dirt cellar, kittens everywhere, a St. Bernard, rodents in home made cages, horses, a falling apart barn, being able to wander seemingly endlessly over the prairies where I picked up that possibly Lyme-diseased tick who lived under the skin of my left buttock cheek till Meryl pulled it out, legs and all and we blew it up with a lighter.  Poor little guy.  Or lady.  I wouldn't do such a thing now!  Where was I?  Oh right.... the juxtaposition of living in a dirty old farmhouse and playing dress up every night and sometimes even being on stage with my sister trying to squawk  out a duo of some sort.  Pretty sure I always ruined it.  That, plus the boxing fights, front row, where you get blood and snot splashed all over you because you are Mr. Universe's sister-in-law.  (Okay, I'm not sure about the Mr. Universe thing.  He really was and is a big deal in the athletic world though!)  And afterward, we stand around, finely dressed, with plastic cups full of booze and ice.  Sometimes one of Meryl's duties was to sing the Canadian national anthem, pre-fight.  I never knew how to respond in these social situations.  I felt awkward and painfully bashful, but apparently I fooled a lot of people by smiling and just being related to the VIPs.  What I remember most was the physical discomfort, needing to lie down, sleep, or at least just not be around people, and certainly not in tight jeans and high heels.  Once at home, at Meryl and Marsh's rented farmhouse on Roblin Blvd, I'd retire to my bedroom and lie there aching.  Once, I went with a group of other young folk - from a church I think - to clean up a camp for the summer.  It was the summer Friday the 13th came out.  But I hadn't even been to my first movie in a movie theatre yet.  All I knew of movies were the Christmas films they'd show in the high school auditorium on Christmas eve, and all of us, moving toward the rear exits, single file, silent, embarrassed, because they'd turned off the Muppet movie when the Hare Krishna Muppet band dressed in their orange robes played a rocky tune completely out of sync with Prairie Bible Institute's odd code of morals. Odd indeed.  Having grown up there, I didn't really comprehend how odd it all was till my 40sC

Nothing has changed.  Not really.

So thing is, it can't have been the tick because I was already exhausted.  Before I flew the coop I was exhausted.  Food felt like poison even then.  After lunch, because I didn't have the discipline to eat only two or three bites, I'd return to classes, but be unable to sit up, and often, unable to stay awake.  It was this, the exhaustion, the physical discomfort, that shaped my social world.  Yes, my mother had a part in shaping my social world as well.  But as studies show, it is more our peers and peer environment that shapes our personality, along with the blueprints in our genes.  Our parents have very little to add after the 50% gene mix about nine months before we're born.

I had quit piano after going all the way through to Grade Ten Royal Conservatory of Toronto because my back and gut were too messed up and it just hurt too much to sit for an hour to practice, and my mother believed me.  I didn't really know how to practice then anyway.  Not until college in Grande Prairie at age 30 did I really learn how to practice. You memorize a piece right from the start, measure by measure.  It's the only way to learn to play properly and beautifully.  Problem with that method is, you need to be certain you've memorized it correctly.  At age 30, I would often practice for three hours despite the agony.  Why am I talking about practicing piano?  I guess because it's all there.  It's part of my story, the one I don't want.  The story I wish I didn't have in me to tell, or keep secret.  I just wish it was a very different story.  Don't get me wrong.  There are loads of beautiful moments to watch like vignettes of my soul's evolution even though I don't believe souls exist.  In fact, the reason they are such beautiful and even startling vignettes is because I had so little to enjoy.  Most of my life was an exercise in endurance.  I may still be breathing, but that doesn't mean I endured.

May 3, 2017 A Home

After being dumped off at the couchsurfing hosts' place, unable to speak or even move, I got onto Facebook and messaged the people who moved my things from Edmonton to Bragg Creek.  I wasn't too coherent, although I knew what I meant - it just wasn't coming out right.  But they got the gist of it and within minutes another ambulance had arrived.  At first I said no, I wasn't going again.  Nobody had listened because John had fed the doctors wrong (or irrelevant to this situation) information.  But the paramedics simply suggested, "well, how about you go and start fresh".  Good idea.  At this point, I was a little more alert than I had been the day before, but I still can't recall the ride to the hospital or much of what transpired in the next few hours.  Eventually I was given something for nausea, vertigo and sleep and disappeared for four hours.  By the way, I should mention that I hadn't yet discovered that John hadn't gone home.  We'd been planning to leave on the 28th, but he decided to bugger off on the 23rd... not home to Ottawa, but to Washington.  Yes, without me.  My sisters were confused and rightly pissed that he'd dumped me and had gone ahead to Washington.  It's OK.  After a few months of John, I pretty much know the guy cannot see or hear anything that doesn't benefit him directly.  I've healthily detached from that.  Can't expect anything from someone who can't do anything.  So it's alright.   But a little weird weird weird.

Jenn and Bruce, who had called for an ambulance the second time, invited me to come stay at their place on the lake - or what's left of Sandy Lake anyway.  I stay in their RV -  SO cozy!  I can honestly say that the pounding stopped for about three days.  I've been sleepy, but not painfully exhausted.... till today.  Everything hurts again.  There's that deep visceral pain that feels like everything inside is all red, contorted, both inflamed and shriveled.  I'm exhausted.  The torture is back on, Baby!

I am trying to think of a way of positively stating things that just aren't positive.  Any suggestions?  It's about people.  For the most part, homo sapiens is an empathetic species.  We help one another.  But then you come across some that fall outside that humanitarian cell and it's not just hard to describe - I don't want to have to describe them.  But there they are.  My sisters in law, for starters, just couldn't get past my idiosyncrasies - those "bizarre" behaviors that to me are survival mechanisms.  Being aloof, lying down a lot, not eating, etc.  It's just not acceptable to be sick.

I've a lot to catch up.... right now my eyes need to close.  They burn.  My cervical spine is degenerating - basically, it is decomposing inside me.  So any tissue still trying to stay attached to the cervical spine is in spasms.  Also, I can't see.  John took my glasses with him, and although I asked him to courier them to the address where I would be for 2 days, he didn't.  Give John another star on his chart of senior citizen moments.

April 29, 2017 How to Endure Torture

Yes.  It's April, 2017.  I've been reading literature about how to endure torture.  Give up hope.  Give up your sanity.   And remain aloof.  So I've been doing everything "right" for about three decades.  But that is supposing the torture will end at some point, either in death, or, although unlikely, in freedom.  Nothing is said about lifelong torture.  I realized recently that I'm not only aloof, but have become quite dissociative.  It is simply the survival instinct, which is a bitch, nevertheless, there it is.

Last week I was in the Foothills Hospital.  I couldn't speak, could barely move, and could hear people talking over me rather than listening to me. I was trying with all my might to scream "No! This is something different!  This is not about chronic issues!  Something happened!"   But no one would listen.  They heard only incoherence and nonsensical mumblings.  I suppose it's like being operated on when the anesthetic didn't take, but you're paralyzed and can't say anything.  They gave me a ketamine infusion which only made the pounding worse, but I was paralyzed so at least it gave me a bit of relief.

The jack hammering started worsening in November and continued to increase in its severity till it culminated in that floaty feeling from hypoxia when you feel like you're looking down from above, in and out of consciousness.  Although I am not at all afraid of death, it still scared me.  I guess I wanted to say goodbye.  So an ambulance arrived and next thing I know I'm under migraine inducing lights in a hospital trying desperately to shout.   So I didn't get any help and was sent home, paralyzed. "Home", being a couchsurfing host where I had been staying but had left the day before.  The young couple was sympathetic but they couldn't take care of me.  John lied to them, told them I was fine, left me like that and flew home to Ottawa (so he said anyway.... more on that later....).  Needless to say, I ended up back in the hospital after putting out an SOS on Facebook. This time they listened.  Eventually it was discovered that my kidneys are failing.  At last!  Something tangible!  I could almost laugh with utter joy!

Still, I am now homeless.   This is what happens when you're sick.  You're aloof out of self preservation so your friends drop away and forget you.  Eventually you find yourself with no place to live and no one to even ask for help.

December 12, 2016 Vlogs I haven't been able to post till now....

October 15???? How did that happen??! Conditions for Getting Better

Just this:

- No stairs or hills or driving
- No standing or sitting upright for more than a couple of minutes
   - carry a camping stool for waiting in lines ( if you're well enough to be in line somewhere...)
- 3 bites/hour - put 3 bites into baggies and into the fridge because most of the time you're going to be too sick and just grab what's there, or skip food altogether. 4 of those baggies need to be meat
- 10 to 12 hours' sleep every night and no animal bed partners
- comfortable bed, comfortable couch.  Physical comfort level should be very good to excellent 100% of the time.
- warmth, sleep in heating blanket at night. During the day, lie on a heating blanket so the heat goes directly into your spine
- no sugar, no grains, no gluten
- clean house, chemical free, scent free... did I mentio NO STAIRS?!?!!!

-I'll remember more and add.

Seriously, if you don't have every single condition for your recovery, you just won't recover, ever.

Can't keep going.... something's got to give!

I can't, just can't keep going like this.  Eventually I will swallow several lethal doses of everything I've been saving for moments like I've been having every single moment of the past - I never know how many to say - years - decades, about three plus.  Can't keep going.  Something has to give. So I stop eating.  All I know is that I don't feel as bad when I don't eat.  It's been this way for nearly 40 years.  After I left home at 17, I just got into the habit of eating a small meal once a day, or more like a nibble, once a day.  I didn't get so tired.  I could function better, not like everyone else, but I could stay under the radar at least, and pass as relatively normal.  So, as much as I know eating real food is the key to getting well, I won't live to get well if the agony is this profound.  So today I ate half an apple and half a piece of sprouted bread toast with peanut butter.  I could have, should have, skipped the toast.  

Felt horrible waking up, like my brain was full of mould, aching everywhere, and dammit, my heating blanket is dead.  But once I finally flopped myself out of bed and into the bathtub, I was ready to find that ENORMOUS little spider that I'd seen earlier in the shadows.  The bedding came off, the mattress swept, the

cracks and crevices in the boards and storage space under the mattress vacuumed, everything into the washing machine, bucket of warm water and everything in my room wiped down..... NO SPIDER!!!!  Just a ton of dog hair, dog food, dog toys, and a dog collar, and also the little white and brown chihuahua waiting, confused, worried for his space on the bed to get put back together.  It was suggested on Facebook that maybe the "spider" was just a cluster of dog hair creepily floating by in the shadows of the early morning.  I acquiesed to the suggestion, knowing very well there was a spider! A big one! (biggish, you know, like, not small, not tiny, but too big to be creeping around my space)!

I took half a Vyvanse about half hour before starting the arachnid search.  And without food, I was able to keep going for five hours before I realized how much time had gone by and I hadn't been desperate to knock myself out!  And I was still going!  Yes, my back hurt, but you must understand this kind of desperation, the agony, the profuse, and diffuse pain, normally wracking my entire body.  And today it wasn't there, just the "normal" back pain - the back pain about which, at age 24 I remember sighing to myself, "well, I guess I finally, (FINALLY, at age 24!) have to admit I have a back problem.  I didn't eat today. That's all.  I am so allergic to food - Leaky Gut Syndrome - that fasting for a month actually gives me energy!  They say you must be super spiritually charged to be an "autotroph" or whatever you want to call those people who say they get their nourishment solely from breathing and a little water.  Hey, maybe I am.  Seriously.  Maybe.  Maybe not too...  I mean, I try not to use that suspicious word, "spiritual" - doesn't it sound sort of arrogant?  Or in my language, "Poofy"?

It is 12:22 a.m. and I have to force myself to stop. That's how non-bad I feel!  I can't upload the videos waiting in queue because I'll run us out of internet usage again.  And I don't go to Tim Horton's for their free wifi because I don't do caffeine or doughnuts or sit, although I may give it a trial whirl.  Or something.

July 25 vlog

Dr. Bev even said I looked terrible.  That infection set me back about a decade. I have much to learn, to connect the dots.  Wrap my legs in the heated blanket instead of hydromorphone.  Eat.  Even cookies.  Decades of malnutrition takes its toll.  Don't be me.  But how to eat when everything feels like poison? When every bite adds to the pain....?

Vlog - Love one another... it's easier than not loving

The subject matter in these videos is extremely personal and sensitive, so please watch/listen/read with respect.  The intent in posting these videos and reading just one text, and not even a particularly cruel one, is to implore all parents to treat one another with dignity and respect, regardless of whatever feelings or opinions you have about one another.  Think of the child/children, to whom you both gave life - that's kind of a big deal, the biggest and best, so treat it as such. 
 
 

I don't have the physical stamina or mental focus to splice these videos together, or set up proper lighting or add music to set the mood... so you get to watch separate videos, as thoughts come to me.  As I begin to rehabilitate from M.E., you'll know, because sitting here will get easier, videos, templates, designs, etc, will be much more creative.  But until then, this is what you get.  Deal with it.

I am not putting my son on a pedestal here.  We all have our struggles.  But I've witnessed the bizarre behavior of this person.  For instance, when I went to visit them the first time, excited, thrilled, happy to meet her, I walked in to see her following Hamish around the apartment, yelling at him, "YOU JUST WANT TO FUCK YOUR MOM!"  Astounded, shocked and embarrassed for the both of them, I walked back out and slept in my car.  Hamish told me later that the accusations went both ways - apparently I wanted to do the same to my own son.  I should also clarify that Hamish doesn't have "former" friends.  His friends from childhood are still his friends, along with the friends he's made along the way.  She says his friends and family are his "cheering squad [and] are all idiots." I don't know where her insecurity comes from.  Like I say, I would love to be able to just hold her and love her, not just because she needs it, but because I did, and do, love her!  I would try to find out where the hatred comes from, and try, gently, to pull it out of her, help her replace it with kindness, love, honesty and respect.  How horrible it would be to have to live with such a negative emotion your entire life, to live with hatred, the desire to be cruel and with invented stories/lies, especially as a mother and grown adult in her mid 30s.  If you ever watch this,  "V", I really do love you!  Just accept it.  It's free, beautiful, and necessary.  No one can live without love, and I mean real, unconditional love!  Try it out - just accept it.  You don't even need to offer the same in return.  True love is freely given.  What harm can it do to just take it, try it on, see how it fits/feels?  It's already yours!

I will probably take this post down after a week or so.  But while it's here, think about it, especially if it applies to you.  I didn't read the really horrible emails/texts. This one was mild.  That's why I chose it.  We simply cannot and should not judge anyone, because we don't know where that person has been,  or has had to come through to get where he/she is today.  We're here to be kind and to love one another!