Wednesday, May 11, 2011

Little Posts: 'Today better than yesterday'

Time flies when indisposed. I’ve been overwhelmed by balancing the appointments and the health needed to do them.

Until my body started to fail, then it was all I could do to endure.

The worker was unable to hear my whispered calls for help, from my weak lungs. They set the fan to blow on me as I struggled to speak, to move, to do anything in my paralyzed body to let them know ‘I’m here, help!”

Time flows fast around the working eye, and I hear her shut the out door. I still couldn’t move anything except my eyelid. But I could feel the lung deterioration, progressing into diaphragm breakdown.

I held on. I endured. For an hour or more there was an explosion from my limbs and torso of nerve pain, perhaps it is what locked up the diaphragm, or sprained it.

To lie there, unable to move, with Linda having a work day, not home for three hours, that is just something to bear. But when the pain came, unable to moan, unable to move, and too terrified to close that eye and let go, then it was a fight. I would not fall silent into that dark night. I told myself that I must hold on. I hallucinated, thinking I was in a war, wounded, left behind.

I prayed. Mostly thank you’s for the people known, for the time I’ve been able to spend with Linda, and others. My life seemed very short now. All my plans and hopes of what to read or see, or emails I hoped to write or read seemed so far away. I thought about it all, “Darn it” I thought, and I sipped what air I could.

I did it. I held on until Linda came home, my lips moving over and over, ‘help me’, ‘help me.’

She leaned over and and I could see part of her face with my eye. She said, “Looks like you’ve had a TIA” (TIA is a mini stoke). I couldn’t see a way out or through this. I kept saying, ‘I love you’ until I was sure she had read my lips.

I didn’t want her ever doubting what I was most thankful for, or what mattered. I couldn't see a way out of this, a way back to the diminished life I am thankful to have.

Linda promised to watch over me and my breathing. So I risked sleeping, but how much I did of that, and how much was hallucinations due to the pain, and lack of oxygen is hard to tell. Linda noted that the breathing was shorter, shorter and erratic while I slept. So weak I could not drink. So Linda used a straw to suck up Gatorade then hold it with her finger on top before dripping the drops into my mouth. I needed the calories to try and get some basic function. Late hours but I still couldn’t move, drifting in and out. The bed was raised so I could swallow the mouthful of Gatorade, then lowered so I could breathe. My stomach was bloated from air swallowed in sleep. This air was squeezing my lungs, stopping them from inhaling.

I was able, then, to take the breakthrough pain pill with Linda putting it in my mouth, and dripping in Gatorade. My jawbone snapped out of the hinges by my ear, as it had for the last 10 hours. The pain had made most muscles locked in extreme tension.

Take your arm, make a fist and squeeze as hard as you can. Feel that tension in your muscle? Remember what a leg cramp feels like. Imagine a cramp going on for an hour. Impossible? Not if it is paralyzed that way, locked with muscles in full contraction for nine hours.

There are things we think are unbearable until they are endured. 'Longsuffering' the bible calls it. Thank goodness the Fentynal had been increased last week.

As the calories grew, things got a bit better, which also meant worse. The muscles started to drop, to release. My body relaxed, and it was like I was being pressed in medieval days, a board on me, with stones added. The only muscles that moved were the ones which twitched uncontrollably from the lactic acid which had built up.

I was faint, dizzy, but I could move my head, and I was starting to get parts of my body back. Linda put my legs, knees up, then swung me so they were off the bed. A tilt of the torso and I fell forward, Linda catching me, as we stagger, my one leg under control, to a cool room.

My hands and lips purple from lack of oxygen, but I started to be able to breath, a little deeper as I cooled down and every bit of calories. It took another three hours. Linda had been caring for four hours. I never would have gotten that care in a care home. But I slowly started to get better.

I couldn’t control my arms well, they would twitch and go in and out of spasm from the hours of muscle tension. I let my head loll on the headrest.

Linda put what we did down in the ‘solutions’ book, because we know neither why it work nor why my lungs declined so severely and so quickly. But it worked, and we hope if that happens, it will work again.

Please, never let it happen again.

I will start blogging regular as I can get out of bed. I’ll show pictures and write of Sakura-con and the trip as I have the ability and strength, if that is okay. I thought I ‘had’ to do the BIG Sakura-con blog, but now I’ll do ‘little posts’.

I worked today a little on my new birthday goal: some new disabled parking spaces in Victoria. There is no rule in Victoria, BC for blue badge spaces so no one makes them. The workers call for me. I talk to owners. I have more owners to go, then the council, and try to win over one parking spot at a time. Right now, there are several thousand street parking spots, and 28 disabled spots in Victoria. Every parking spot in every lot is a gift for all.

But that is another ‘small post’. I’m glad to here. Here is good, today better than yesterday.

12 comments:

Elizabeth McClung said...

Thanks, I am glad to kinda be back too.

There are thousands of blue badge disabled people vehicles but only 28 spots and a couple more in two parking garages (most pay parking doesn't have blue badge spots), and street parking is ticketed and regulated. For example, the village grocery store of 200 parking spots has zero blue badge. Victora doesn't have any near facilities, and says to park in regular parking and pay the regular rate (how do I get the wheelchair out of the van?), which is usually far away. Pic-a-Flic has a lot with an oversized parking spot but won't list it as blue badge, same with a resturant I talked to today - they have a long ramp, spent 6 million in a refabishment but didn't pay for a disabled door opener or have a blue badge spot. The parking lot of most doctors offices don't have blue badge spots. So for those who like me, have less and less energy, or need to be by the door, you are lucky to get a parking space a block away often. And the chances of a door opener even in government buildings is very low.

As we have 65+ baby boomers coming and tens of thousands spent annually on tourism, I am asking that they designate more spots, which cost nothing, so we and every one else with a blue badge can go out to eat (I don't know of ANY private resturant parking lots of over over 10 spots and up to 50that has a single blue badge), to shop (50/50% if there is ONE spot at a grocery store, in a town that has over 33% seniors; we need the spots very badly), to go to malls (the spots in the malls are often AWAY from the doors an entrances - seriously, and the resturants in the mall area have zero blue badge spots near the door to their resturant - if there is a ramp to get up) - it is easy to say, 'eat somewhere else' but only 1 in 8 resturants are wheelchair accessible and of the seven we have gone to, most have private parking lots, none have blue badge spots, starbucks has a disability table, but no blue badge spot in the parking area. No spots at all for the mall, book shop and resturants from the main street to the water (where 30+ eateries are, all the private comic and other bookstores, the 4 storey mall, and all the banks). We used to wheel eight blocks to get there, now that I am too exhausted to do that, there isn't any way to go to downtown with a vehicle. So to improve tourism, and the lives of the thousands in town with blue badges, I want to increase the number of spots to more than 28 for the capital city. The next town over has bylaws, as do many of the islands, of 1 in 16 or 5%, it is only the Capital of the province that doesn't have any laws for parking spots, and thus no spots made. I talk to different private owners and hope some will put one at least as Blue badge. A sort of 'if you build it, they will come' to increase the quality of life of tourists and all those with disabilities and blue badge vehicles.

I may not well enough to go out, and have to have the care workers dial the numbers but if I get even ONE spot added, it will make victoria better.

Oops, I seem to really care about this issue (the trip to the USA opened my eyes: Olive Garden, Mexican food, tiny resturants or stores and all with good blue badge spots for unloading) I was able to park within a half block of the con due to blue badge - a half block of a 16,000 people convention!

Baba Yaga said...

Ever the campaigner: great good luck with that.

I think there are things which are unbearable even after they've been endured - isn't, come to think of it, PTSD the evidence of that? I don't think anyone diagnoses during-TSD, yet the things you go through are certainly traumatic.

How like you (and how very, very sane of you) to have love as your 'last thing' - while there's love to hold on to, there is something.

I never ceased to be awed by the creativity and dedication you and Linda bring to keeping your body going.

Noisyworld said...

That sounds horrific, I'm glad you found your way through and out the other end.

Tina Russell said...

I’m so glad you made it through, Beth. Surviving on drops of Gatorade during a stroke, that’s pretty badass. And it sounds like Linda has good creative problem-solving skills in addition to boundless love and devotion, so that’s wonderful. (hugs)

Baba Yaga said...

Hello, blogger's eating things again. (I think one of the things it ate was yours, so you probably know that.)

Not going to duplicate today - brain is in very short supply -, just say hello.

Elizabeth McClung said...

Oh yeah, the comments are gone. Blogger did a 'one hour update', crashed for two days and then had to reboot an earlier program so this post disappeared for two days and is back today.

Baba Yaga said...

Ever the campaigner: great good luck with that.

I think there are things which are unbearable even after they've been endured - isn't, come to think of it, PTSD the evidence of that? I don't think anyone diagnoses during-TSD, yet the things you go through are certainly traumatic.

How like you (and how very, very sane of you) to have love as your 'last thing' - while there's love to hold on to, there is something.

I never ceased to be awed by the creativity and dedication you and Linda bring to keeping your body going.

Raccoon said...

I'm glad you're back with us, so to speak. I was starting to get a bit worried.

I hate to say it, but I don't think I'd worry about the parking spots. I know that here, in the states, a blue tag can park just about anywhere except for red zones for free. Is it that way in Canada?

And yes, breathing is good.

Elizabeth McClung said...

Thanks, I am glad to kinda be back too.

There are thousands of blue badge disabled people vehicles but only 28 spots and a couple more in two parking garages (most pay parking doesn't have blue badge spots), and street parking is ticketed and regulated. For example, the village grocery store of 200 parking spots has zero blue badge. Victora doesn't have any near facilities, and says to park in regular parking and pay the regular rate (how do I get the wheelchair out of the van?), which is usually far away. Pic-a-Flic has a lot with an oversized parking spot but won't list it as blue badge, same with a resturant I talked to today - they have a long ramp, spent 6 million in a refabishment but didn't pay for a disabled door opener or have a blue badge spot. The parking lot of most doctors offices don't have blue badge spots. So for those who like me, have less and less energy, or need to be by the door, you are lucky to get a parking space a block away often. And the chances of a door opener even in government buildings is very low.

As we have 65+ baby boomers coming and tens of thousands spent annually on tourism, I am asking that they designate more spots, which cost nothing, so we and every one else with a blue badge can go out to eat (I don't know of ANY private resturant parking lots of over over 10 spots and up to 50that has a single blue badge), to shop (50/50% if there is ONE spot at a grocery store, in a town that has over 33% seniors; we need the spots very badly), to go to malls (the spots in the malls are often AWAY from the doors an entrances - seriously, and the resturants in the mall area have zero blue badge spots near the door to their resturant - if there is a ramp to get up) - it is easy to say, 'eat somewhere else' but only 1 in 8 resturants are wheelchair accessible and of the seven we have gone to, most have private parking lots, none have blue badge spots, starbucks has a disability table, but no blue badge spot in the parking area. No spots at all for the mall, book shop and resturants from the main street to the water (where 30+ eateries are, all the private comic and other bookstores, the 4 storey mall, and all the banks). We used to wheel eight blocks to get there, now that I am too exhausted to do that, there isn't any way to go to downtown with a vehicle. So to improve tourism, and the lives of the thousands in town with blue badges, I want to increase the number of spots to more than 28 for the capital city. The next town over has bylaws, as do many of the islands, of 1 in 16 or 5%, it is only the Capital of the province that doesn't have any laws for parking spots, and thus no spots made. I talk to different private owners and hope some will put one at least as Blue badge. A sort of 'if you build it, they will come' to increase the quality of life of tourists and all those with disabilities and blue badge vehicles.

I may not well enough to go out, and have to have the care workers dial the numbers but if I get even ONE spot added, it will make victoria better.

Oops, I seem to really care about this issue (the trip to the USA opened my eyes: Olive Garden, Mexican food, tiny resturants or stores and all with good blue badge spots for unloading) I was able to park within a half block of the con due to blue badge - a half block of a 16,000 people convention!

JaneB said...

You survived, and it sounds awful, and I am glad you did survive, that Linda came home and found a way to help you back... little posts are wonderful, but YOU must make YOU your top priority, OK??

Olivia said...

Glad you made it through, of course! Thanks for sharing with us a little of what you go through. Little posts are great. Your idea of a little post about about my standard one actually (maybe longer). ;)

Lorna, Bob and Liam said...

Ok, totally short on inspiration and long on insipid, today...

God, that sounds horrendous. Goddess, I'm glad you made it through.

Gatorade = good. Linda = awesome. Beth = strength to the tenth.

Love you.