Wednesday, August 18, 2010

Illness and 'Try or Die': alive or living? Sometimes just surviving.

I wonder about when ‘those things that must be done’, the horrid things and the tedious things that it takes to keep going and allow my life to continue somehow BECAME my life. There are times when maybe they are part of my life and there are ‘survival times’ when it is just that: surviving. But with my memory problems, it is soon that all I know, in the smallest fibre of my soul is that I am devoting my all to keep the organic systems that still kinda work still working: spinning plates with shaky hands.

I am in the tail end of more than a week of a heat wave. It is hot enough and long enough that I all know is this little room and the air conditioner here. I sit here in Indy and sleep in the makeshift bed beside Indy because outside this room, the apartment is in the 80’s to 100 degrees plus. And outside, the heat extends another two days. Going to the bathroom is a preparation in endurance, because the heat makes me fall over, fall down, limbs not working, brain not working.

Heat hurts. It is like having salt blocks weighing your back and limbs down: grinding your joints, making the muscles scream in stretching, creating invisable sores. The body aches, it cannot stop from aching. Even in the little room it hurts. I sit in front of the air conditioner and I am thankful that it is not worse, and I hope that this time I can keep my sanity. This day.

Four walls, and an air conditioner which sent me into tears for half a day because the compressor wasn’t coming on. And if the compressor didn’t work, I didn’t have anywhere to go, and it just got hotter. Each day my gut was full or more air, my lungs not recovering, purple hands and arms all the time, because of the room and the limitations of the temporary bed.

This is supposed to me telling you why though I am doing four hours of research a day, my blog post on Oregon is still coming. This is my fourth time and second day writing this ‘short’ explanation because I don’t know how to make the surreal real or make it so readers know that a clonic-tonic seizure hurts every time, and so does heat exhaustion. And my lungs are tired of breathing. And I am tired of reminding them. Because I asked Linda last night, “What goals do I have.”
“Stay alive.”

“What plans?”

“Stay alive.”

I drag myself to the bathroom and back to bed. I did it backwards yesterday because I didn’t know if I could drag myself forward anymore. I spent the hours needed to evacuate my intestines and I wasn’t well. The night was pain and I woke to a fast pounding heartbeat of blood desperate to trigger the sweating, to cool me, but it can’t. I had a headache, a fever, nausea, dizziness and skin that was actually grey. It was full heat exhaustion and I could barely move my head. So I did a little research and resizing of photos on the Oregon blog post until I couldn’t see right anymore.

Then I lie back because I knew I wasn’t going to be able to lift my head again. That day, I needed help lifting my water to drink. I lay there in Indy, until sleeping, then dragging crawl to the bathroom, and then back into THE room. That was a long couple days.

I want sick leave. I want to be allowed to relax and exist as a sick person, instead of just being ill. I want the luxury of being depressed. But I can't. Because even sick I have to remember everything, from what pills and medication when (now 10 different times a day), and drinking always, the same water, three to five liters a day or more (now you know why those Brita filters on the wishlist are important to Linda - try sucking down five liters of gagging gross water every day: try watching some you love having to do that). Even when I can’t lift the bottle, I have to drink. “Are you a quitter McClung?” my inner coach yells at me, “You want to spend days living with consequences because you are so lazy you can’t do what you need to now?” Any insult as long as it works. Oh, I am tired the hurting heat brings, and my brain and the world but I drink and count and take pills (and then try to take them again because I forget and have to be stopped, or panic because the pill container is empty); I check about the visits we need to make, the forms to be filled. I can’t lift myself into the wheelchair but if I don’t get the toxins out through my pee, they won’t come out at all, and I drag myself to the bathroom again.

Last night I was so weak that I couldn’t move my head, couldn’t turn it, and it had fallen to the left. I woke four hours later with it still there, not a movement of a muscle on my body during sleep, I was so exhausted. But it was time for me to pee, time to drag myself to the bathroom. And then I would sleep some more.

I wonder if this is why others with this disease die and I don’t. Because they took a day off? Or they took some afternoons off until they could only lie there, unable to do it anymore?

Linda, when relaxing reading a book, or job searching goes to bed three hours late. She can’t remember a time when I just kept doing stuff because I was having fun, just gave into temptation. She can’t remember a time I slept in during the last two years, not when I wasn’t unconscious.

And during this I still work or plan on going out, on working hard. Even though I can’t get better, can’t regain function, I can only slow the degeneration down. Loss is when things are out of control and we hang on and see what is left at the end of it.
I feel like I am on a small sailboat and everyone I know is on a cruise ship ahead of me. Their life moves on, things come in and go, relationships, plans, sometimes they just don’t have time anymore, and they stop coming to the back of the ship’s deck to yell things to me. While I am in my little boat tossed about by the wake of the cruise ship, but trying with everything to keep up somehow, to be someone they would want to be part of their lives. But the reality is they can't hear me, not way down here, and the sound of life, the waves, the wind. That's what the blogging is, trying to do more, trying to show that unheard doesn't mean gone. I bet a lot of you know that frustration.

People up there, way up above the sheer walls of a ship, say I am inspirational. If that is true it means they are inspired to places I can’t go, to lives too busy to include me. When for me, THEY are the ones who inspire me: to keep going, to keep at it because I don’t have blood family and the one place I want to be is up there with them, and it is the one place I can’t be.

We should be thankful for the trivialities and little choices in our lives. I don’t want to stay alive, I want to LIVE. And if you don’t know what the difference is, then you haven’t fought for it.

I watch the TV show Mercy which came this weekend. It is written by a woman and I can relate to almost every patient that comes in; the nurse with PTSD and the chronic illness, the degenerative illness, the anorexic. When the main female nurse finds the girl at 11 who has been pimped out by her mother she goes in and punches her screaming, “You did this to your own daughter!” She faces hospital discipline from the (male) doctors and says to her friend, “If I was a guy, this wouldn’t be a big deal, the police didn’t see it as a big deal.”

Her friend says, “Yeah, ‘if I was a guy’, but you aren’t and now it is just on how to get by.”

I do laugh at the doctors on the show when they say that doing an operation on someone with an oxy-sat of 90 is ‘too risky’ because my oxy-sat was in the 70’s over a year ago. That’s a doctor view, an organizational view: ‘too risky’ – when your life is what it is, and you have to keep surviving, there is no ‘too risky’, no matter how scary it is.
I watch Linda struggle with finding a job, taking care of me, trying to find a program to fund some of the pills, to deal with everything by herself. I get frustrated at my helplessness. I am told, “It isn’t your fault this is happening.” But it doesn’t feel that way. I want to put myself in a coma and get out of her way, only I know that doing stuff like that would just make her life harder. And love is making sure you don’t make their life harder if you can avoid it.

One more disc on Mercy and then I have to sell it, hope to get half the price needed for the next DVD set. Or maybe use the money for the water filter replacements we need. Always more water. Always more Florestor needed.

I don’t know what people I do. I don’t get depressed and lie in bed. I don’t feel sick and lie in bed. I don’t lie in bed reading. I don’t lie in bed watching TV. I work until I can’t move, until I can’t think. I work until the pain is so much I don’t make sense any more, and then I watch a DVD set. Because engaging means less pain control, which is less cost for Linda and less pain for me. Engaging means more language routes in my brain which matters when there are a lot of seizures and strokes. Because I am the expert of my illness and need to be able to write (though often backward) what to do to home care or Linda in order to help me.

Sure, sometimes I stare at the wall, or at nothing (that’s called a seizure!). Sometimes I stare at a wall because I am paralyzed and wait until someone comes who get that I need to have my head moved, and headphones on and a DVD in the computer. I have done the wall staring too often, and recently had a six hour stint of wall staring, unable to move, except for a thumb. And that isn’t much help. And after six hours I slept, and then, for an hour after waking, stared again. It is a boring wall. I have sussed the literal, metaphoric, symbolic and intimate meanings of it. And that is WITH a fuzzy brain. So yeah, I always need DVD sets. That’s what the DVD sets on the wish list are for.

The manga is for the bathroom, where I have to spend at least 18 hours a week to stop from getting impacted. For the rest of the time, I am doing: trying to get done what used to take 10 minutes in two hours. I went for a wheel up to the library to pick up some holds and hurt the right ribs, the OTHER side of my ribs. So that was sort of funny for the first 10 minutes. Too much to do, the aggressive defense of keeping a life, instead of being alive, even if that is just two emails during the three hours I am functional. And the things put off, that need to be done because they didn't get done before I passed out or had a seizure, or just couldn’t move anymore. “Time to watch something.” Linda says then.

So that is what those manga, books and gift certificates and DVD sets mean in my life now. They mean I don’t spend the time staring at a wall. Everything doubles up here, even ‘entertainment’ has to have at least two functional uses. But more than anything, it means I have something to look forward to. Going into the hottest room in our house for three hours to be rocking back and forth and HOPE that the intestines are producing lubricant (imagine passing gravel without lubricant….for hours!) is hell. No getting around that. But knowing that for the minutes I am not just staring ahead and hanging on, I have Biomega, or Lucky Star or something good to be able to read for a few minutes at a time can make the difference between crying for an hour while in the bathroom and not. Sometimes what tips the scale over toward sanity or just holding it together emotionally another day, or hour is a letter, or a manga I enjoy. Or rocking back and forth turning a DVD set box over and over again in my hands, then asking Linda to read the description, trying to imagine and anticipate getting through THIS, the thing that has to be done, and what good thing is on the other side.

And that is why I am so thankful for everything from letters to gifts and gift certificates.

I have to eat a pickle a day, as it irritates my intestines (which helps), and I loved pickles. I told Linda yesterday, “Oh, I was a kid and I loved pineapple, and ate it and ate it and ate it until somehow I couldn’t eat it for over 10 years after one gorging.” I picked up the container with the pickle of the day. “Promise me that after I die, I don’t have to eat any more pickles for a while.”

This is what passes for humor some days.

I long to take a break.

On the trip I passed out so often on the toilet, or at the end of the day and Linda was too tired that sometimes she just left me there, on the bathroom floor. What else to do? No health insurance for the US, no health insurance in Canada. So I am passed out. I am woken to another day, and I struggle and get up.
The shotgun in pressed against the back of my head. “Try or Die” it tells me. And I am not going to be the one who dies. Not this week. And not THIS heatwave. Not this month.


Lene Andersen said...

I wish I could offer you something that would help. I, too, am stuck in that sailboat - in a different way than you, of course. I'm stuck because my shoulder won't let me out and that means it won't let me write your e-mail or write cards to you and the financial side has tanked, so I can't even buy you a gift. And this isn't about me, because... well, it just isn't. But it means that I am mostly absent in your life at a time that you need me more than any other in our friendship and that just makes means stuck in this damn tub of a sailboat even worse.

I think of you every day. Please ask Linda to write it on a sticky note and put it somewhere where you can see it. I am there with you in my thoughts, every day. Trying to help you get over the line from being alive to living.

Lorna, Bob and Liam said...

Oh, Beth. What is there to say that isn't trite or banal, patronising, or just somehow offensive?

*sigh* We love you. We wish for better for you. In the absence of that, we witness your living and encourage the choices that make that life worth fighting for.

We'll send some stuff.

We'll make sure there are no pickles in the afterlife. (Well, that last one, maybe not so much.)

Hang in there, you and Linda both.

Aviatrix said...

You are the strongest person in the world, yet sometimes you can't even move your head. You are a genius who doesn't always understand what tomorrow means. I know damned well that I would have given up long, long ago. I know you're not a zombie, though, because zombies don't feel pain.

SharonMV said...

Oh my dearest Beth, I wish I could take the heat away. I wish I could go up there and scream at it till it didn't dare to come again! Nothing but cool ocean breezes for you and sweet cool air to breathe. We are dealing with heat waves here too. but happily this time our air conditioner is working (though the cost of running it is a constant worry). And I have ice packs & I make ice bags with the many small zip lock bags that come holding all the medical supplies. Just fill a bag with ice cubes, then insert into another bag & hope it doesn't come undone in the night & soak you with icy water.

I hate the days that are spent in survival mode. Still too much to do & not enough strength to do it. Taking all the meds, drinking fluids, having something to eat so you can take more pills. Trying to take in enough salt, as my adrenal glands no longer keep it in my body. Not doing my nebulizer treatments for breathing because I don't have the strength to prepare the medication & wash out the little resevoir to hold the meds. And what do I do when I can function? I sit at the table & stamp, stamp, stamp. A limited amount of stamps because I will have to wash them when I am done. Or if I'm up in bed, I sit up & work on cutting out things I've stamped & ready them to go through the little sticker making adhesive. One thing about Lupus flares for me is that I sometimes get a bit hypomanic which creates mental energy that can help me function.

But I have some times when no amount of mental cajoling can get my body to move. For me, these are short times. I can get up if I shout it in my mind long enough. I can walk into the kitchen to get water, food. I can make it to the bathroom. It's just hard, very hard. And it hurts. And sometimes I feel like I won't make it, have to hold myself up with the kitchen counter, push myself along with a hand against the wall. Or try to make it to the nearest chair.

All this is bad when I think about it objectively, but it is what I endure. Yet it is so far removed from what you endure, what you go through. I know it takes so much for you to get through those bad, sick days. I have the memory of the better days, the less difficult days, the days of more that survival. I hope you have pictures up around you of some of those good days of doing, seeing & dreaming. I hope you have enough DVDS.

I am sad & it hurts my heart that you have to go through so much. I am awed that you do it. And I am thankful that you keep going & work so hard to stay with Linda, with all of us and to be my friend.


PS: I sent you something in the mail.

Raccoon said...

"I don’t want to stay alive, I want to LIVE. And if you don’t know what the difference is, then you haven’t fought for it."

I like that. I know the difference.

You would not like it here today. Over 90°F - about 33°C.

I'm thinking cool wind your way.

rachelcreative said...

A powerful post Beth that reminds me to do more. To shout to the back of the boat as I can't come sit by you.

SharonMV said...

Dear Beth,
I hope it is getting cooler and that your air conditioner is working at full power. I wish you could have a day off from being sick, a vacation from all the pain, illness, worries & and the grueling work of fighting.

i wrote you a long comment yesterday, but think I lost it in cyberspace. I was telling you about my days in "survival" mode, although for me, survival is not so literal as it is for you. It's more like getting through the heat & the sickness when I'm too weak to anything more than the daily tasks (and not even all of those). And trying not to go downhill & get worse. trying not to loose the hope of better days. But I can remember better days. I wish you could too when your in a really bad period. You are always trying & fighting. Carpe diem has a whole other meaning when the day is bad, full of pain & struggle. But you take the day, live through it and go on. And in my own way that's what I do too.


I sent you a little something in the mail.

Baba Yaga said...

Hi, Beth. Don't you know yet, you don't have to try to be someone I'd, we your readers would, wish to know, you *are*.

Yes, sometimes life maintenance gets to be the whole of life. It's never a good time, even when it's much less critical than for you. The cost of rebelling against the drudgery is so high for you.

From a very different perspective, I understand bobbing on those rather worrying waves in a dinghy, being tossed on other boats wakes, watching the cruise ship where Real Life is going on recede. It's rotten. I'll hope for the odd porpoise or dolphin to pop up and keep you company: not as enough, but as the little gifts that brighten effortful days.

I don't think I'm on the cruise ship (I'm not so very sure I want to be): maybe a little gleaming tub of a yacht, which can visit the same waters you're in now and again.

Thank you for telling us about the staring at walls: I know the staring at walls feeling, but didn't realise how much of it there was for you.

Even healthy people need the disengaged time, the nothing time for recovery: and needing it not to be so nothingish that it's intolerable is entirely reasonable. Passive entertainment is a blessing of the modern age, especially for imperfectly healthy people; but for most of us. Radio on while I knit? (Fascinating cricket today.) Certainly. Keeps me sane-ish.

Which reminds me, have you special requirements for fingerless gloves? They won't come fast, I knit slowly and erratically, but I have some wool I think you'd like. I'm guessing man-size and extra-warm?

I hope cooler weather comes and stays.

Elizabeth McClung said...

I think a lot of people with chronic or other illnesses or disabilities who get ill go through periods where it just seems like surviving. Like the whole world is sailing away. I wanted to write something that described a small amount of what was. Linda said it the picture of the girl dragging herself was perfect as that's how I look (I wouldn't know, I've got six more inches to go, then another six).

The heat wave, they say, is over, and now, catching up was the first day I was not on continious oxygen, so that is an improvement. I don't remember anything beyond some of today: Linda said I had many seizures yesterday, and I think she used the ambi-bag a lot. I get tired sometimes, breathing is hard sometimes.

Lene, Lorna, Bob, Liam: I know you care, and I care about you - the frustration of a week without even a decent blog much less postcards or cards or letters.

I do not do things because I wish to be an 'asset to society' but because I wish to be an asset to the people I care about.

Aviatrix: Well, zombies do moan a lot, so I don't know, maybe they do feel pain. Linda was getting some fluff or something off my face today and I told her, 'if the skin comes off with it, then I am zombie for sure.'

SharonMV: It is what it is. I survived, and I have almost caught up with things like eating and drinking, and the strange exhaustions. I am still sane, I think.

The last thing I want around me is a memory of what I could have done but now cannot. I lust after the exercise regime of Raccoon. I am not ashamed of the past, but that is not a place where I can live.

There are some people who simply cannot be held by a prison because all they think of is escaping. And so they do. Even when I rest, it must matter.

I only found out recently that if offered $10,000 today or $20,000 in a year, the majority take the $10,000. I spent my whole life on the future, but even then, sometimes, all the planning and options and percentages run out, and the body is just a body.

Raccoon: a man with a plan, I envy that. Thanks for the cool wind, next I am recovered in what was lost in the week, then to regain my routine, then to create a new plan. Simple (ha!).

Rachelcreative: with the right uplift, the right stimulus, a good late evening, I can rise and know exactly how much I have lost.

The blood brain barrier does not have a micro net as many think, it lets large things through and very small, but only what it determines it needs - it is a true aware bionet. Who watches the watchdogs indeed. I can admire even the parts of me that go wrong. I spend so much time working out ways to induce exceptions in order to maintain function. "If I can induce a panic attack, I can get my heart restarted" -

Elizabeth McClung said...

Baba: Pain will always be subjective because if a person can be stimulated to another aspect of consciousness, the pain is ignored - it is a matter of making the conscious subconscious so that will and collective conscious achieve the tasks before pain or fatigue, ever trying to take priority in an acending curve, gain that upper hand. When heat make the body try to explode, it is harder to focus. But I practice every day.

The idea of power is tied up with life: power over living, and the more desperate I become for medication or such, the more open I am to subjective abuse. My workers laugh inappropriately, and in an system where life and power are connected (which are all systems), the person connected with death has no value at all - so a 20 year old worker with high school education corrects me and laughs, because they are of the group of the living, and I require them to maintain living.

What terrifies all with power is facing someone who would rather die than submit. Who holds anything greater than life. To act, because it is right, regardless of consequences, is terrifying to almost everyone, because, for example, a soldier who puts down a gun and says 'no, this is wrong' is seen as mentally off: that a free will choice which ignores power preservation baffles and terrifies.

This is part of why I loathe that my choices and Linda's choices are bound into this, that to continue to affect those in ripples of discord, I must remain alive.

Neil said...

I've stared at walls for a few hours myself, Beth, during mygraines. (Hmm. That's a typo, but I kinda like it.) And hearing life go on in other rooms even though people are trying to be quiet so you can recover in peace; I HATE that.

That's only hours - maybe a day - and it's nothing compared to your current life. I simply cannot think of what to say that might inspire *you*.

I wish we could haul you up to the cruise ship to stay with us.

I hope that the weather stays Beth-temperate for a few weeks, and that you are able to get a little pain-free balance back.

Love and zen hugs,

P.S. Does anybody else find they have to enter their password twice EVERY time they post?

wendryn said...

There's nothing I can say, really, except that I'm sorry and I wish I could help. I'm still here, still reading, and I still care about you, both of you, very much. *hugs*

SharonMV said...

Dear Beth,
Maybe it is better, just being what it is. To be only in that survival mode without memory of more than a couple of days. Then it is all you know - you have to do certain things to keep going, and being Beth (still EFM), you do them. Maybe you don't have the feeling that it will go on forever. I don't like to be reminded of things that I can't do and will probably never do again either. But I do like to remind myself of what I can do, the little pleasures I can still enjoy when I'm having what is a good day for me now. The things you can do when there isn't a heat wave, when your breathing is a little better, when maybe you get to go outside - that's what I meant. I'm truly sorry if I said anything that sounded cold or unfeeling.I know that being reminded of the losses hurts. I don't understand everything about how your memory works, but I try to learn. Sometimes I feel disconnected from you and this is painful to me. I wish I could do more for you, be there in a more tangible way. You and your friendship are very important to me.

I also wanted to mention that the pictures you chose for this blog are superb. Beautiful & capture so much emotion. I've scrolled down several times, just looking at the artwork and it's like the whole story of the blog is portrayed.

Maybe all of us in our little sailboats & dinghies & assorted rafts can form our own little flotilla - alone but still connected.


cheryl g said...

I keep comng back here to post and then I don't because I don't know what to say that doesn't sound trite or patronising. I want to say something profound...

Then I realized that isn't important...

What's important is that you know I am here, reading, listening, acknowledging your life and feelings. I am here to help you LIVE.

Kate J said...

Nothing I can add, really, except my love, and my hope that things will ease a little for you. And to say how much I always love the pictures that you, somehow, find the energy to select and post on your blog.
Love & peace

JaneB said...

(((Elizabeth))) gentle long distance ones. Thank you for sharing, for refusing to be quiet and good and tidily invisible. Instead you are wonderful and articulate and, yes, inspiring.