Thursday, February 17, 2011

The Long Road: horror and beauty

How was my valentines day? Oh, it was an emotional boiling, rolling fiery cauldron of emotional pain, isolation and hurting, both at each other and ourself, holding on to that thin thread and refusing to give up on the good, though it couldn't be seen. And we didn't, not even after 10.5 hours of it. That was followed the next day by heat stroke, paralysis for over three hours while my brain boiled, and my body shook and a loss of an eye for, well, I don’t know yet. Oh, yeah, there was pain plus a guest star, thanks to my doctor: a surprise monster hormonal period.

My doc decided I wasn't in 'teeth clenching until they crack while I sleep' pain but I was more ‘achy’. Yeah, the 'achy' is why my hands shook so bad today I had to be helped to eat today. And because women low on estrogen get ‘achy’, he doubled it, which is good in theory, but in practice, put me out of synch with Linda and triggered a monster pain/emotion implosion for two days (for the guys here, this is know as, 'the time I need to leave my wife/spouse/friends who are female alone, and get them chocolate donuts')

And this was a monster implosion. I hear they can see the crater from space. The international space station is wondering what that is. It is a woman with so much pain in her spine that it hurts to lie down, who suddenly got the ability to shoot fire out of her eyes.

So I have been a wee insane. Linda noticed tonight that my OCD was getting more and more intense, and the more I tried to ‘control’ it, the more I looped that energy back into it. Plus my heart rate while sitting relaxed was 115 bpm. So maybe, I'm not that relaxed.

Control. We want it, we hate it when other people have it. It is beyond the pain, the whole body falling apart in different ways, the things which makes being ill suck. Today, I couldn’t move, I could just lie there, burning and burning in my skull, wanting to vomit, and pee and all my nerves were paralyzed so I just stared out and felt that part which has the best of me being boiled alive.

In the last two days I have bleed from my nose, from my mouth, twice from my ear, and that just is. You know, I wipe the blood off and continue the conversation, which might be, ‘No, I won’t take that pill, you touched it and it has germs.”

For those who have gone down The Long Road, the one that has no future, no plans, no hope, you know what I mean. No hope: that’s the worst, the knowledge in your gut that this is it, that pain and blood, and knowing that there isn’t a person to talk to about this is all life will be.

A caretaker SEES, but they don’t feel it. When a caretaker messes up, and we all do, the person cared for suffers. When I mess up, I suffer, when Linda messes up, I suffer, when the care worker messes up, I suffer. And for the last days, that is all I was able to see: the eternity of time between now and death filled with twists and turns of suffering both emotionally and physically each day. The LONG ROAD.

Maybe you know it. Those who are bipolar should. And those with depression, and chronic illnesses. The long road. The time when each part of the day is gutted out because you’ve given up on dreams and anything besides THIS. The what is.

There is no easy cure for The Long Road. You just got to gut it out. And then somehow, all those things which have to be done, which are your future become both horror and beauty. The little laughs or a limp smile from a comment that has nothing to do with anything but makes it somehow okay for that minute, and maybe the next minute too. And that is how things are sometimes.

It took me three hours to eat my breakfast which has: bowl of stuff to help digest in intestine, laxative, soft roughage, laxative, tea I don’t like because it helps the edema, stuff I hate but have to eat in order to create lower intestine lubricant to limit the amount of anal bleeding, another bowl of laxatives, three bowls of pills for heart, liver, and so much else, and water. I have had the same breakfast, every single day for the last 900 days.

Probably too much detail.

It took me a caregiver and 20 minutes to eat the second bowl (upper intestines, and soft roughage). Because I can’t miss a day, I hate it, I have to eat it and finish before my heart sends me to the hospital, so if I don’t finish before I stabilize my heart (and if I just take the pills – that, I have found out, is a very quick trip in an ambulance!), I have incredible pain and a race to not go to the hospital.

“That’s not so bad” you think. Except that is just one of the dozens of things I HAVE to do, no matter how sick, or how cranky, or how much pain, if I can’t hold a spoon, they feed it to me, and if I can’t swallow, they massage my throat. So, tell me, in 900 days, how you never get down, or sad, or sick of the same damn food, never wonder if this is all there is? And they just keep adding more and more things I have to do at breakfast, so much now that it fills more than a tray (3 mugs, 1 bottle, 2 bowls with spoon, 4 bowls of pills, 1 bowl of lubricant, which must be chewed to a small pulp before swallowing, two full containers).

But that is the price for living the rest of the day, or one of the prices. And sometimes whether it is breakfast or just getting out of bed with the pain in the bones and muscles, it is, that day, just a hill that is too hard to climb.

Except there isn’t anyone else who can climb it for you.

Welcome to The Long Road.

I hope it is easier tomorrow.

Here is your reporter from the land of insanity, signing off.

11 comments:

rachelcreative said...

Yep sickness, illness, disability and terminal illness doesn't respect holidays or special occasions that's for sure. It's certainly not wrong to want to take a day off, even an hour or a few moments off - away from the routine and the slog. But the cost for you to do that is too dear. What kind of choice is that? Oh yer it's not a choice.

I am amazed at how knowledgeable you are on keeping your body alive and as well as you can. As in I am in awe - I struggle to keep my little annoying symptoms managed whereas your determination has you soaring into the skies above me as I marvel from down on the ground.

Seems kind of reckless of that doctor to scribble something on a prescription without assessing the impact of it. Proves what an expert you are on your body and your condition. If only the doc would listen.

That long road sucks. How it mixes uncertainty about the journey with a certainty of not being able to break away is hard. There's routine yet there's not knowing what's next yet there's no surprises when the next round of pain or whatever comes to you.

It scatters my mind and it's a difficult place to be and my load is a lot lighter than yours and I have hope that the path could turn one day. It's no shock to me that your path is so achingly hard and you feel so alone. I wish it were not that way but I hear that it is that way for you and I won't diminish what you share by wishing it away. Because I know no matter how much you Beth want things to be different they are what they are. I'll hope for better tomorrow and for more forthcoming pain relief from the doc for you.

SharonMV said...

Dear Beth,
Hope your road is easier today. I just sent a post, but don't think it went through. Instead I got a page from Google asking me to create my own blog. Perhaps my post was too long and self-referential? So I send you this brief note instead. Again wishing that today is better and that you are recovering from the implosion.

Sharon

wendryn said...

I hope today is easier. I'm glad you are still here, but it's an incredibly hard road you are traveling.

I don't know what else to say. I'm still listening. *hugs*

Elizabeth McClung said...

Sharon: it is an open post, anyone can post - but if it is very long, over so many characters, it stops it from publishing. don't know why.

I thought the last picture of me was so becoming, haha

SharonMV said...

Beth, just my little joke - although I do get wordy sometimes. Actually I figured out I was supposed to enter my ID & password on the new page & then the post goes through.

Sharon

annette2 said...

I love the picture of you on the twisty road and I am glad you were there and Linda or Cheryl got the inspiration to take it.

You always pick the right picture to go with what you're saying.

Lucky there is no one hanging over you saying you should "offer it up" like a Christian martyr.

Once years ago a nun came by our office selling a Saint calendar with pictures like the one on Leonard Cohen's first album, I think the one with So Long Marianne on it. Of course I snapped it up - it brought back my Catholic school upbringing, and the exercise books we used to use. I actually stole one once, with a picture of Jesus, "The Boy Saviour" on it. I guess the life long guilt is following me

Annette

Elizabeth McClung said...

Annette: I get told to 'offer it up' often. Emails to remind me that I 'should be' more x,y, z and if I don't act appropriately, I am chided or dropped. The same from the caregivers who do intervention prayers or exhaust me when they are to put me to bed, but refuse to turn off the light, talking to me for two hours instead, wanting me to keep talking, keep telling because 'I'm interesting' - God, help me survive those who say they represent you. ha.

tinarussell said...

(I posted this yesterday and I thought it was up, but now it’s not... either Blogger ate it, or I said something stupid and it was deleted on purpose. If it’s the latter, I’m sorry for posting it again... let me know...)

Yay for being sweaty and sexy! About the cold drink thing, it is great to try and infuse some sexiness into everyday things, isn’t it? It’s a shame some people don’t get it. It sounds like Linda does, which is great!

I’m glad the patch and boxing have helped you feel a little better.

I understand what you mean about the practical vs. pondering thing. I’m a space cadet and always trying to relate everything I see to the whole of the universe and to whatever I saw on TV last night. I need someone to help me remember things like getting the towels out of the dryer... (Did I mention I have ADD?)

tinarussell said...

(facepalm) That’s because this is the completely wrong post. I assume the worst way too often... sorry! (Delete both of these if you’d like...)

Elizabeth McClung said...

it is an open post, anyone can post - but if it is very long, over so many characters, it stops it from publishing. don't know why.

Truth is, I am usually far too ill, you know, having parts of me die as the process of having all of me die to moderate anymore which is why anyone can say anything and pretty much always have except when it is offensive to others members who comment and read. I am not actually into censorship as much as this comments section makes it appear. More like respect, and compassion, finding out about other people to care about them. Which is why I am almost at the point where I cannot write anything anymore, as you are not the only person who wishes to assume my nature, my mind, my self, my words, my viewpoint, my life: there is a long and active group.

Lene Andersen said...

I've been on The Long Road. Sending you love.