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……..at 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…”
FUSSING?
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.”
“Yes.”
“Completely asleep”
“Yes.”
“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.
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