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.