Saturday, July 25, 2009

Living. Suffering.

I have had a headache for most of three weeks. I wasn’t sure how to start this so I would start with that, a binding headache, make your eyes bulge out, the back of your head blow out but held by hair and skin headache.

For me, the entire day is a racing against time, against sleep, to try and get things done. There are people who need caring, and I do care deeply. I cry for others because I don’t know how to cry for myself. I know what it feels to be alone and pounded daily, to have acid pouring down from people, from faceless organizations, raining acid. I want to save anyone from having to feel what I feel. I act, I reach out so that no one will ever be me. Never like me. Because I don’t know how to stop the pain, and emotional pain makes my own body ache, the bones old and brittle, the body ripped apart and set on fire until if feels like the skin holds only a shell and smell of ash. I want others to smile because I rarely do.

I was to see a cat on Wednesday, but that was cancelled by the cat owner. I don’t see people. I have not had an eight hour night sleep in over a month, or a six hour night sleep in over ten days. I am not getting better, as I require 11 hours sleep a day or systems will fail and the most common is oxygen. So it fails, and my muscles cry from oxygen deprivation. Because the body is a survivor, it rips oxygen from anyway or any part it can, from muscles from organs, from the structure of cells themselves, leaving them broken and oozing. The pain it leaves is exquisite.

I cannot remember a time when I did not lie for a hour or more in pain instead of sleeping, where I did not wake after two hours in pain: the pain that would make me pace or walk to endure it. But I can’t walk so I just writhe in bed, and cover my mouth so as not to wake Linda. At times, when I can’t stop moaning, I have begged for a gag. I cannot stop suffering but that doesn’t mean Linda has to.

I have chosen living because living is choosing. I try to clamp off my body, which shrieks pain in my bones, my joints, my muscles, my skin, lungs, heart, organs every minute I am conscious, and often unconscious. As I was recommended by USA specialist and Canadian doctors to have better pain killers in April but my wait for an appointment for the pain clinic was cancelled. So the seconds pass in pain, 1, 2, 3 until 60, and the minutes until 60, and the hours, and the days, and the months and I am still in pain. If I did not have pain, I would not if I was awake.

Here is a dream I had recently:

I was a detective, and this man was in a frenzy because his wife and baby were missing, and off he went with his gun. In trying to find out the solution I ran into people, one shot me in the shoulder, another stabbed me, and another broke my foot. But I found out, and I found the man who had taken over an office meeting room full of people. So I confronted him, bleeding and limping on a broken foot, and in the way of dreams it was both the boardroom and his bedroom. He had set his wife and child on fire. I got the people out and confronted him, trying to tell him that the bones on the bed were his wife, and he had killed her. That is why she was missing. He set fire to the room, trying to block it out. So I stood in the fire, cradling a dead baby, burnt, the black skin sloughing off in my hands, slick from mucus and slippery, the face sliding off and showed him that the baby was dead. Talking to him while I burned, the flames obscuring my view. I burned on, and on, and even after he put down the gun I kept burning, and the pain of it, radiating everywhere woke me.
I lie there, the pain the same, and realize that my maximum strength pills for sleeping had worn off early.

Another dream I had recently was where someone take a sledge hammer to my hands and feet. These are not nightmares, not the burning, not this as I feel no fear, it is just, ‘Oh, I wonder how I will escape now that my arm is broken, I guess I will drag myself.” And then they used a hacksaw with my feet and eventually cut them off, and I thought only, ‘I wonder if I can escape on the stumps.” Why would this be a nightmare as how would a stabbing or shooting make pain more? Why would I fear someone making me feel what I live every day? I saw a movie with a plane crash and people were burning, part of their body on fire and they were running and screaming, even avoiding help in their screaming. I could only think puzzled, “Why are they screaming....that doesn’t stop the pain?” I guess, if they would show it, I would be the person on fire hunched over a desk, doing.

I tried screaming in the first while, maybe months, maybe a few years and some times I do scream from the pain but now, I look at my feet and wonder which toes are broken and then have a shower, what is the point?

I guess I am surviving, except that I don’t know if I have the most basic level on Maslow’s hierarchy of needs: love. I suppose it is hard to see the love when a hug puts the pain so high I pass out. When touching me sometimes makes me stifle a scream and a ‘sorry about that’. It is important to be polite.

I have been pounded emotionally on a daily basis for at least three weeks. I have had hope taken away. I have been turned into a non-person. My actions of buying, my desire for manga is a form of nesting I do....a last resort to find an escape, an emotion or feel emotions I don’t have, even for a time. The last time I had collected 25 DVD sets to watch, to make sure I was safe, but that didn't build a wall to stop the emotional pain and so tried to kill myself. And Linda kicked down the door, and later I tried to kill myself, and I tried to kill myself until I had a safe room with no way to throw myself out; where Linda could lock me in, with books and other things but nothing I could hurt myself with. And I had a contract on when to put me in the safe room.

But here, and now I don’t have a safe room, or a contract, just pain and a life without hope medically: no GP, no specialist, the approval for IVIG but no one will sign to say, "I'll give it." I went to the doctor and they would not look at anything, not a bruise, not a vaginal sore, they said, 'you need to go to the ER', they don't deal with me except for prescription refills anymore. I don’t get my medical treatment at a walk-in medical clinic but at a pharmacy. The rest just goes on, or rots, if there are bruises or breaks. Without hope.

I am so far from joy that I don't know how to even consider it.
I’m sorry. I think I am a disappointment. I’m blogging every day because I said I would. But I don’t know if the phrase ‘better’ makes sense in applying it to me.

I still try to collect manga, even if I am too frantic or too much in pain to read it this moment in the hopes that I can find a place a space where I can and I won’t kill myself. Is that hope or survival?
I cannot think of autumn and winter, of snow and rain and being inside and with frostbiten hands. I am not joking as much anymore about the indignities and pain. I cannot think about it because I am climbing mountains every day just to stay in the living and the struggles of winter is too much to think about. It is the alps and I don’t know if I can want to imagine things getting so much harder, so much more painful.

When I wake in pain there is nothing Linda can do. So I lie there until there is no skin on my bottom lip from biting and the pillow is wet from the tears that run down the sides of my face.

I want to fight for life, for living. If I have a disease so rare, then why not be the person who is also so rare in the statistics that I live on for years. Except I can’t imagine this winter. Except my heart and lungs were collapsing this morning. Except that I had help breathing yesterday, and the day before. Not help with oxygen but the breathing too. The pain of breathing is like running your little toe at full speed into an oak table. It hurts like that to open my ribs. And I have to do it, consciously, breathe in, try not to scream, breathe out. Until the pills kick in and I sleep. I wake 90 minutes later begging for more pain pills. I have given up praying for no pain, or even for death, I just pray that Linda can sleep.


cheryl g said...

I am so very concerned about you. I am worried about the duration and intensity of the headache. I am deeply angry with what passes for health care at all levels in this city and I am feeling incredibly helpless. I see you in such incredible pain and I can do nothing to ease it. I know how wearing unrelenting pain is stealing energy, reserves and any joy. I would give anything for you to have proper pain control.

The dreams you describe would be nightmares to me. They are yet another sign of how the pain is affecting you. You are indeed surviving but I want to help you feel loved. I want to help you feel joy. I am not sure what to try but I am not giving up.

Things that gave you joy some months ago don’t seem to make you happy at all now. I just need to figure out what would make you happy. I also would like to see you and Linda make a new contract and I will help Linda make you a safe place.

I am still here, still listening, still trying to help.

Anonymous said...

Elizabeth, please don’t say that you are a disappointment, I don’t know how you could be. Actually I find it amazing that you manage to do as much as you’re still doing, although you’re in so much pain and although the basic things like eating and sleeping, that most people take for granted, cost you so much effort. I hope you don’t feel an obligation to write your daily blog just because you have said you would do so. I hope you will only keep this commitment as long as it helps you in some way.

JaneB said...


Gentle, virtual hugs. You are loved, never doubt it.

I am here and I am listening.

wendryn said...

Oh my dear. I'm so sorry it hurts so much, all of the time. I suppose it's good that all I can send are virtual hugs. I'm sorry to hear it's so hard, but I'm glad you are still writing, not just the high spots but also the rest of reality - it's something that needs to be heard. Only if you have the energy, though. I worry about you pushing yourself too hard.

Xander and I are thinking a lot about you. No idea what to hope for, at this point, but you are in our thoughts.


Lene Andersen said...

It's amazing what you can get used to, what you can try to live around - sometimes better than others - what the mind can withstand. When you know the pain won't go away, so you just... endure. get other priorities.

Brilliantly written. Wish you didn't have to experience it, but boy, do you paint a picture.

Cereus Sphinx said...

You are Loved.

And take a break whenever you need to, a blog can be a wonderful distraction or an energy sink.
Or an important soapbox. I admire that.

And seriously, whoever is in charge of getting you pain pills sux at their job. >_<

SharonMV said...

Dear Beth,
I wish I could take some of the pain away. This should not be allowed to happen to you. I wish I had power, power to make someone help you. I wish I could hold you gently in my arms & that it wouldn't hurt you. I send my love and what bits of hope I have garnered I give to you.


yanub said...

I have no words to take away the pain. I wish I did. The pictures you have chosen are evocative and sad. And I know what you mean about not wanting a hug because physical contact is too painful. Touch needs to be pleasant, and if it can't be pleasant, then it should be pleasant memories or pleasant ideals. A painful hug is not a hug, but an assault, no matter how loving the intention.

Of course, your head being split open and your brains being scooped out and then put back in, over and over again, doesn't mean that you stop doing what you can. There is nothing to do but what you can. And chronic pain is...boring. Enduring is dull. So you have to do what you can but the damnable pain makes that so very hard.

Oh. And I hate the doctors, the medical system, in Victoria. Sadistic, smug, self-satisfied sphincters they are.

Nancy said...

I think you're the opposite of disappointing. To me, you're a writer who openly and candidly tells her experiences, and that's extremely valuable and worthwhile.

annette2 said...

You have an amazing ability to put your pain into words and pictures. It is easy to see how you feel by the manga.
I am sorry that the doctors do not want to see you with your complex medical needs. As much as I would love to live where you are it is the shortage of doctors that would worry me. With all the intelligence you and your friends have I am sure you have tried everything you can think of.

Neil said...

The others - Sharon, Cheryl, yanub - all say what I want to, but they say it so much better.

Yes, Beth, you ARE loved. I, too, wish I could make the pain go away (perhaps into some of the medical professionals in Victoria?)

I'm sorry; perhaps instead of saying that I thought you might be feeling better, I should have said that that it was nice you were able to get out to the market, to air hockey, and smile for a few minutes. But after a trip like that, then you pay the price. And oh, what a price you pay...

But the pictures you choose are still eloquent, and still we love you, dear. And we're still here with you.

Love, and very careful zen hugs that you can feel without being hurt,

Raccoon said...

Okay, just a short note. I'm still here, though.

Your descriptions, your writing, are... I want to say "amazing" or "fantastic," but those words don't express what I want to express.

That you can so clearly express and describe what's going on, the physicality...

And this is another post where the images that you use fits so well with your prose...

You are still alive. You are still human, despite your claims to the contrary. And you are still loved. By Linda. By Cheryl. By Neil, by me, wendryn, Lene, Sharon, and lots of other people that I'm not going to list.

How can I help?

Abi said...

I don't know how to say what I want to say. Your post was beautiful, in a particularly horrible way. I wish that you didn't even get to imagine pain like this, let alone live through it.

You are loved, you know. By a lot of people. I know that intellectually knowing that and feeling it are two different things, but knowing it intellectually is a start, I feel.

Sending incredibly gentle hugs.

rachelcreative said...

It's not fair - you shouldn't have to endure so much.

I heard a saying that "the unbearable is bearable". But it doesn't mean you are able to thrive.

I'm sorry you're not able to read your manga right now as I know that is a great comfort and means a lot to you.

This may sound trivial when you have so much pain but I'll ask anyway - have you tried audio (music or audio books perhaps) to help when you're not able to read? On a very basic level I know that a hot water bottle helps with my sciatic pain because it tricks the brain. The brain says "ooh heat" and the "pain pain pain" message isn't quite so loud.

I know you've used music for training and blood tests. I wonder if it would help any.

What you need is better pain control and a doctor with the morals to help you with that.

I don't know what the answer is Elizabeth. But I don't want the problems to go unacknowledged and not shared. If you have to endure pain every second I think I can sit and read, think and comment on that for half an hour out of my day.

The headache sounds monsterous. I hope it eases.

Elizabeth McClung said...

Well sort of a good news/bad news on the headache, which was that I was not wearing my alert emergency button after I did this, and was in the bathroom when I felt my head was huge and dizzy and floating away from my body and my hand turned very, very red (left hand) and both ears went 'blam' and my left ear ached for 12 hours or so, still slightly aching. And I would have pushed the button if I was wearing it, since clearly something was wrong (it was the beginning of a stroke). But in the end, after 20 minutes, besides the ear hurting my hand returned to normal and I could see again and my head reattached and so I continued going to the bathroom and when Linda came I asked her if my face matched and my right side was a little droopy but the headache was gone. Seems it was high pressure building towards a stroke. Which I thankfully missed by sheer luck and stupidity. As I think it would have been massive.

Cheryl: Well, I am thinking that I cannot be the only person without proper breaththrough pain meds so it is important to write down, and I wish that I had a GP, who would know me and know that it was time to get serious, but we are at where we are at and yeah, it is kind of hard to push through the gauze veils of pain to see the world much less enjoy it.

That night I dreamed I was hit by an artillery shell, that's how I knew my pain medication was up. So again, hard to find a nightmare, and I do feel removed from humanity more and more.

I want to be happy, I want joy, I want to know what that is again.

SAndra: I write the blog because I want to write but also, I don't want my life to be a prison of pain, I want something that is mine, some mark that is left by me that says the pain has not completely eaten me up. And the blog is where I am making my stand.

Jane: Thank you. I hope you understand I feel the same way about you.

Wendryn: Worry on, I push myself too hard and isn't that like the pot calling the kettle black coming from a person who has a 80 hour a week 'part time extra' job not to mention the rest - you push yourself too.

I think of you and Xander too, and hope for less heat.

Lene: At some level to disassociate from the pain is possible at others not so much, it is like an axe in the head, if you walk around with it for a while will it be forgotten? Probably not. But I do try.

Cereus: Yes, since each blog is about six hours on average, you are right that it can be an energy sink but also a challenge - can I give my best today, can I bring something good? So blogging gives me feedback and lets me communicate and is something outside this little apartment and box o pain. Which is good. But it makes me push and push myself which is sometimes not good.

Yes, there seems to be a serious gap in the degenerative pain department or even chronic pain department where you are supposed to wait in pain for months until seen by a specialist who then decides what anyone with eyes can see (and usually the hospital has already told them) - that you need more pain control but then they still won't give it to you unless you are dying - which is why I am like, "Woo hoo, Seattle says I am definately dying....oh wait, why am I happy?" - but even that is not enough for quick relief. One particular GP who wanted me to quit instead of him saying, "I find your case too complex" tried to take me off all pain meds and tell the pharmacies that I was not to have them (addict and all that). But since they were ordered by a specialist, that meant he was openly going against a specialist instruction. But still, rather terrifying to wonder if he has done that before, taken people off all pain medication who displease him. GP literally do get away with torture and murder - like a car licence, they have the power of life and death and all sort of things in their hands, and right now, in victoria, there is such a shortage that no one seems to be regulating and weeding out the bad ones.

Stephanie said...

Sighing. I wanted to think last week that you were feeling a bit better, at least at a plateau instead of deteriorating. I kind of talked myself into that because it's so hard to see you hurting for ever and ever and ever without a break.

At the same time it's hard to express how I imagine that blogging at least gives you something to think about other than the pain, so I'm glad that you've decided to write daily for that, even if it sort of gives off the illusion that you're doing "better". Although with you, it seems that there is no "better", just "hanging on", and it's hard to support you and it's even harder for you to keep going.

But Elizabeth, you're wrong. You are loved. You have people here loving you and trying to support you, even though it's through the Internet. We're all hoping for you and hoping for you to have some joy while you're choosing life. I at least am very happy you're choosing life, even through all this. It shows your strength, a strength that reminds me to be strong. Still hoping for you.

Another topic entirely, do you use Japanese art postcards? I saw a pack today at a museum, I think it was inspired by Japanese art. Oh, here: Could you use those?

Elizabeth McClung said...

I apologize, if you can wait another day, I will try to respond to every question, idea and comment. Hard subject followed by hard time. But I want to talk about it. Thank you for leaving the comments.

FridaWrites said...

That's a lot of pain, when it seeps through your dreams like that and you wake up with it as intense if not more so.

Some doctors show no mercy.