Saturday: Laughing lunch turns to Hell Night

Linda: Beyond the unexpected arrival of heat, Saturday had promised to be a fun-filled day. Cheryl arrived mid-morning for a weekend stay and we were meeting up with Dave Hingsburger and his partner Joe at a local Mexican restaurant for lunch. That part worked great, we all had a great time swapping anecdotes about life in the gay and disability worlds. I can’t remember that last time I’ve had such great mealtime conversation. Just goes to show we don’t get out enough with others!

Saturday afternoons we try to play badminton at the YMCA, particularly when Cheryl visits, we lend her one of our extra wheelchairs. You’ve all read about Elizabeth's seizures/TIAs she’s experienced. When it happens at the Y, a hush falls across the gym, people stop their games, the co-ordinator rushes over and asks with anxiety in his face whether he should call for help. I calmly pull out the oxygen and apply the cool packs and say “no, she’ll be fine” while inwardly willing Elizabeth to come around. Fortunately she bounces back quickly. I’m afraid that if it happens while she’s alone they’d ban her from coming back.

Though the gym was so hot that I was soon sweating buckets (there’s an image), I didn’t really put together the heat of the gym with Elizabeth’s heat issues. Cheryl later said it was between 30-40 degrees Celsius. There was no air or breeze in case it should alter the flight of the birdie.

After about 90 minutes Elizabeth had an episode. She had a blank face at one point, and her body and brain looked like someone pushed the pause button. After a bit she sort of snapped out of it, letting us give her water and put on the oxygen and cool pack. She was determined to continue even though she was having vision problems (could only see out of one eye). Here’s where I always face a dilemma: let her stick with her determination and continue her quest despite consequences or take control and pull her out. Either way I’m kind of screwed – if she continues she’s in pain and I have to watch her writhe or hear her say ‘I could have finished the game, why did you make me stop.’ Because I have such a hard time saying no I usually let her continue - often until it is too late.

Yesterday, we tried a few more volleys but she couldn’t see out of the left eye so couldn’t return the birdies. She was also burning up and had difficulty staying upright. Deciding enough was enough Cheryl and I took her home and tried to cool her off. Plunking her in front of the small portable air conditioner, we applied a cool pack and gave her cool water to drink. It was too late – her body had been traumatized and within 30 minutes had decided to rebel. She spent the next 3 hours in the bathroom with horrible cramps. Our bathroom is not much bigger than the tiny Japanese ones we took pictures of. It has no windows and a very loud extractor fan so gets no air flow into it when the door is closed.

When Elizabeth is experiencing these cramps she sounds so tortured – because she is. I can imagine what it must be like for an expectant father while his wife is in the midst of labour. He sees the tremendous pain she’s experiencing, hears her cries and there’s nothing he can do to take the pain away. He can give her some cool water to drink and hold her hand but that’s about it. With Elizabeth there’s also seeking the balance between showing I care, trying to help and also giving her the privacy she needs.

She was overheating. I gave her lots of cold water and an iced frappachino from Starbucks to cool her down from the inside. We took off most of her clothing and I applied a damp towel to her back. She almost hyperventilated. As soon as I heard her gasp I had a flashback to the time she had to pour cold water over me in a Turkish bath after I had passed out. I couldn’t breathe from the shock of it and I could see she was having the same problem.

Earlier this week she got mad at me because I’d apply a cool pack from the freezer to her chest or back of the neck each and every evening. “Do you think it’s fun having ice applied to your body every day?” she asked. “Do you think I enjoy freezing?” “Why is everyone so quick to do it?” “Have you ever had cool packs directly applied to your chest for hours at a time?” “Why don’t you self-apply some for a few hours and come back and tell me how it feels!” (I thought about it, but I didn’t do it).

As I applied the cool packs or towels I felt like such a meanie because I was doing something to her which she hated. I know it was necessary to do, but I still felt bad doing it. That didn’t stop me from zippering her entire torso into the special cold vest I had been storing, with water filled gel in the fridge.

I moved the A/C to the bedroom and cooled the room off. Around 8pm she finally emerged and went for a nap, around 2 hours behind schedule. She had difficulty getting to sleep and was hallucinating.

Things did not get better after the nap. I was so focused on getting us supper before it got even later that I didn’t have time right away to help Elizabeth with her packages she wanted to mail like I had earlier promised I would.

When Elizabeth is hot, particularly when she has been woken from heat her senses were on high alert, and me putting on the oven to start cooking and Cheryl reading, and shifting on the couch were too much: it was like constantly petting a cat the wrong direction. She put on her MP3 player and worked away. When the meal was ready she didn’t want to eat with Cheryl and I because we’d be too noisy. She left the room and went to the hot study and worked some more. When I later went to offer help, she was in too much pain and I had been too busy doing my thing for us to seem to be able to communicate. I gave up and decided to leave her alone, checking periodically.

Around midnight she got dressed and decided to go for a roll. I hate it when she decides to go for rolls late at night and refuses any company. It’s not a rational thing to do. Does she just want the exercise, does she just need the cool air to cool her down, does she just want some peace, or does she want to run away and never come back. Tomorrow is the anniversary of her roll to Moss Rock and I suspected she might going that way. It was obvious that she was in pain, and had been for a long time and I didn’t know how much this was about just getting out, out from where all the pain was.

In our earlier years together I’d block the doorway and not let her out or I’d finally get so pissed at her I’d stomp away and say “Fine, be that way…” I know, so mature. Years have passed and while I still haven’t figured out the best way to handle it, I try not to be too controlling. More often than not, I let her know I’d go out and look for her if she wasn’t back in an hour. Such was the case last night. An hour passed and I told Cheryl I needed to go out and look for her while she waited by the phone (she’d call me if the police called and I could call her if I found her). It sure is nice having someone there to share the fear with.

I only got a few blocks from home when I saw an ambulance at a street corner with lights flashing. Glistening in the headlights I saw some spokes. OMG, I thought, she’s in the ambulance again. I soon saw the spokes belonged to a bicycle not a wheelchair but I parked the van and started heading over to the ambulance to make sure. Did I mention that when Elizabeth not rational that I often become irrational too?

About 20 feet away I see Elizabeth wheeling across the street from the opposite direction and I feel relief that she’s still upright and not in some ambulance or lying on the ground somewhere. She doesn’t want to talk with me or let me walk beside her on the way home. The furthest I can go is about a block. She has her wall of silence where I think it’s too much effort to interact with the world. Of course, I often take it personally and think she’s mad at me. Sometimes I’m right.

Elizabeth: I went for a wheel because I didn’t feel like I was part of our home anymore. It seemed that Linda and Cheryl were clicking together and were fine by themselves. I had things I needed to do and no one was talking to each other, everyone either focused on their task (Linda obsessed on dinner, me on finishing packages to be posted), or just didn’t talk about the tension. I was in so much pain from the heat and felt that I was a big joke to the others, when this was something important to me to do. So I decided to roll and the temp outside was cool, a physical relief. Of course, I did not realize how exhausted I was and I decided to roll to the Cemetery and back (Hey, I had no money, at it was past midnight, how do I run away from home?). I did arrive to find that while there was a full moon, Ross Bay Cemetery has NO lights. Talk about freaky. I wheeled in a ways and took some pictures of the tombs. I tried to use a night long exposure but it was so pitch black they didn’t turn out. Only one, showing the moon coming through the trees.
So I did a couple flash pictures and then wheeled out, scaring a person standing opposite the cemetery smoking at 1:10 am with a startled shudder. What, having someone wearing black wheel out of the darkness of a cemetery at 1:00 am is odd? I guess so. I wheeled in the street on the way back because I was really, really tired and not sure if I could make it back by Linda’s deadline. I thought I still had 10 minutes when she drove past me. Sigh. I realized in the graveyard that while after two days of heat pain and problems, I may not want to live, but I wasn’t ready to die. Well, that was at 1:30.

Linda: I drove back and walked beside her because some guy was following her, because she was clearly in distress. But try convincing Elizabeth of that. It is all shaken heads, pushed out bottom lips and determined to push herself, even if she can’t sit up and her torso is lying on her legs, using one eye to stare at the cement to navigate. She finally made it back home around 1:40 am only to have a repeat of the cramps. Back to the bathroom for another hour.

She’s still not talking and from the bathroom, heat and cramps all she can hear is Cheryl and I talking to each other in the living room to keep ourselves awake (even though Elizabeth repeatedly told us to go to bed…like we were going to do that! Good thing there is only ONE stubborn person in this relationship right?). There’s no way we’re going to bed while she’s still up. She’s feeling alone, and upset, and unwell. At times like this it is just a race between her strength and the bowels, plus she was peeing about twice what she had drunk. She said, the last she remembered was 2:42. I check on her periodically and came to check on her at 3:00. She was passed out on the bathroom floor, naked.

“Don’t panic.” I tell myself. I put the cooling vest on her and she immediately goes into shock: her whole body shaking uncontrollably even though she drifted in and out of semi-consciousness. Cheryl helped me roll her onto a bath sheet and I’m able to drag her on the towel into the bedroom and out of the bathroom which was suffocatingly hot. On with the oxygen as her fingers had turned purple. Cheryl pulled out her stethoscope and checked the heartrate which was beating so fast she couldn’t get a reading. Cheryl said she had passed Heat Exhaustion and gone into Heat Stroke. Her body was still in shock and was shaking. I don’t know how much time passed as I was too concerned to look at the time but eventually Elizabeth started coming round. When she could finally move an arm, or hand she finger-spelled that she was in ‘shock’ and her lower body was in ‘spasms’. Cheryl still could barely discern between the heartbeats, it was beating so fast and her blood pressure was 168/148. She finger-spelled that she had been bleeding out of her nose. Then she started groping for something. Finally we understand that….she wants to brush her teeth?

“Elizabeth just SIT STILL!” I wanted to scream at her (maybe I did?), because she couldn’t seem to understand the condition she was in, and that the last thing she needed was to return to the sauna of the bathroom. Plus, I had dragged her bodily OUT of there, how was she going to get there? She seemed to think she could crawl there. I just wanted to put her to bed, forget the teeth. She fought getting on the bed, and using my body tried to walk to the bathroom so I shoved her onto the bed, leaving her sprawled and shouted, “Can’t you just wait!”

We finally got her on the walker and into the bathroom to brush her teeth and what happens? She sees herself in the mirror and tries to start brushing her hair. I was NOT amused, vanity can go too far sometimes. Cheryl and I got her from there into bed.

Once she got into bed more pain started, extreme pain. She said her bones were hurting – a comment she’s made the last few nights. Her spine and back are causing the most pain. I give her pain pills, muscle relaxants and valium. I have another fear – is this the new reality she’s going to face every night from now on? I don’t voice my concerns in hopes she hasn’t thought of that. But that’s another subject for another day.

Well, except that now she WAS talking she just kept saying the same thing, “Kill me……kill me…….kill me.” Then as the pain grew, she went into a spasm which Cheryl called, “Elizabeth turning herself inside out” or “Elizabeth turning into a crab.” She was in spasm several inches off the mattress, her back arched from her head to her pelvis with hands curled as she kept screaming, “CUT THE SPINE! CUT THE SPINE!” Even touching her spine caused a scream and then, between “Cut the spine” she would indicate we should go to sleep! That did not seem an option right then. Finally between holding her and the pain meds, she settled down around 4:00 am, still thinking it was 2:40 ish, the last time she looked at her watch.

I’m happy to report today was a better day for Elizabeth. The temperature cooled several degrees, we talked about our feeling of yesterday and why we did what we did. Seeing thing from each others view and NOT being in pain helped a lot. So we were all friends again and Cheryl and I chilled out with Elizabeth talking and watching Rebus (season 4 from BBC) till Cheryl left. Here’s hoping Monday will be a good day, too (and cool weather!).

I didn’t expect my first “weekend blogging” to be quite so….eventful. But this was the worst episode of heat exhaustion I have ever seen Elizabeth have, and this is only May. Cheryl had a great line for the “kill me” which was something like, “We’ll discuss that another time.” It was a terrible night for Elizabeth, and I fear foreshadows a long and difficult summer ahead.