Sorry it’s been so long since I last posted, folks. When I explain, I hope you’ll understand.
See, one of the things that often comes along with EDS is heat intolerance. I’ve heard it postulated that it’s connected to a lot of different individual changes in our systems caused by our defective collagen. For me, the heat intolerance means a couple of things.
1) If I get too hot, I faint, especially if I am standing. My ‘too hot’ is significantly lower than most people’s.
2) In addition to fainting, I sometimes collapse – I just kind of fold up involuntarily. No loss of consciousness (or only momentary loss), but my body just buckles.
3) I get dizzy, nauseated, and exhausted.
Now, the temperature at which all of these things happens lowers significantly if my hydration, salt, or blood sugar levels dip. No matter which level it happens at (1 being the most severe, 3 being the least), I feel ‘off’ for a significant period of time, up to 2-3 days. That period can be shortened by getting IV fluids, but I really, really hate getting IV needles poked into me. My veins are deep and difficult, and so it tends to hurt like hell.
Anyhow, here in my little corner of the world, we had a pretty big heat wave this week. The boyfriend was a hundred miles away by train at a 3 day interview/testing session for one of the jobs he’s applied to. To be perfectly honest, if it weren’t for my aide, I would not have gotten fed most of the nights he was away. I was in bad shape all week.
On Tuesday, I had my first day of my summer job, at the judge’s office where I worked the year before I got Hudson, but with a new supervisor. Unfortunately, I got sat in a hard wooden chair, and even my little memory foam travel pillow I took with me couldn’t save me from my back getting verrrry uncomfortable. I nearly fainted as I waited for the trolley to take me home from work, and staved off collapsing by leaning very hard against the railing at the edge of the trolley stop. That night, I ran out of one of my important pain relief medications. Without it, not only do I ache like I’m bruised and battered all over, I also can’t sleep. I didn’t fall asleep until 6:00 AM. On Wednesday, in addition to still being in bad shape from the day before, the lack of my medication was getting worse…and the heat was oppressive. I slept most of the day. On Wednesday night, my prescription was finally filled, but it takes me about 24 hours to recover from not having it for a day. Despite having slept most of the day, I slept just fine that night. I missed work Thursday because I was just in too much pain – the lack of medication and the hard seat at work on Tuesday had locked up the muscles in my back, neck, and shoulders to the point where I couldn’t even raise my hand to level with my chest or turn my head without wincing.
Friday, the boyfriend got home 4 hours earlier than we expected from his interviews. Great, right? Well, sadly between the heat and the back/neck/shoulder musclejam, I was still feeling under the weather. That evening, the heat finally broke. I was starting to feel better.
The boyfriend and I decided that it was too damn hot in the kitchen to make dinner, so we went to Taco Bell to get something to eat. We would have gone to the Arby’s that’s right around the corner, but my stomach was grumbly enough that I needed to avoid grease, and I am very unhappy going to Arby’s if I can’t get curly fries.
So we figured we’d go out for a quick jaunt, get food, and come home so I could go back to resting. We left the house at 7:15, ordered our pseudoMexican food, ate, and then…
Cue car trouble. The car won’t start. We tried to get a jump from a couple of nice guys who volunteered to help, but it didn’t get us anywhere. The boyfriend has AAA Plus, so they sent out a tech to diagnose our problem. The boyfriend suggested that I take a cab home, but well…I’m a little worried about money until the boyfriend officially lands a job, and the way cabs drive tends to hurt my back (sometimes quite badly), and I occasionally get crap about Hudson when I get into one. I decided I’d wait it out, after all, the tech was supposed to be there in 20 minutes.
If it’d been what we originally thought – a simple dead battery – the tech would have jumped us and gotten us on our way in just a few minutes.
Instead, the tech spent an hour trying to figure out what was wrong. His diagnostics computer said everything was working just fine. When we were hooked up to him via jumper cables, the car would start just fine…but within 30 seconds of removing the cables, the car would die. An hour of him charging and having us start the car and taking off the cables and listening to the car die again. I honestly am pretty upset that the guy spent an hour doing that, because frankly once he eliminated things he could find, he should have tried a couple of times and QUIT.
Why do I say that?
Because the tow truck to take us home didn’t get called until the tech gave up.
So at this point, it was 9:15. 2 hours, when I’m not in shape to begin with, is a long time to be upright. I needed to get home and lie down. The tech calls AAA, they say they’ll dispatch a tow truck.
I realized at about 9:45 that we had no idea when the tow truck would arrive. I called AAA on my phone, because we were expecting the tow truck to call us on his phone. My phone number is from the opposite side of the country, so the AAA office I got patched to? Yeah. Wrong side of the country. After an interminable wait on hold, I finally got a hold of a person, who said the truck was supposed to be there at 10:10.
Well crap. 25 minutes of waiting weighed against the discomfort I knew would happen if I got into a cab. The boyfriend has developed a very, very ‘soft’ driving style that uses gentle changes of velocity to protect me – almost completely antithetical to the lead-foot driving you get out of most cab drivers. Alright. I’ll wait another 25 minutes. What else am I going to do?
Naturally, the tow truck got hung up. It was 10:20 by the time he got there. He got the car popped up on the truck efficiently, and didn’t say anything as I stripped Hudson’s harness off so we could get him in the cab with us. I’ll admit, I had seriously feared a fight with the tow truck driver about where the dog was going to go, and with my boy’s fear of big machines, there was no way in hell I was leaving him in the car to ride on top of the truck (and to deal with getting loaded on and off the truck!)
The tow truck driver, though, was one of those unexpectedly decent people you run into now and again. A minute or so into the drive I mentioned my relief that he hadn’t hassled us over Hudson, and his response was something along the lines of being laid back about things, and besides, what was the dog going to do, chew on everything? Hudson, he said, was far better behaved than the drunks he’d get called to pick up because they called AAA and said they were having car trouble when really they were just avoiding driving home drunk. He was a very congenial fellow, and if it weren’t for the fact that the boyfriend, the dog, and I were kind of wedged together, it would have been as pleasant as being towed gets.
We had him drop the car off at the car repair shop in the closest shopping center to us. The boyfriend had offered to run home, get my car, and come pick me up, but by that time, I was so stiff from sitting that I thought a walk would do me some good. Compared to the weather we’d been having, it was a beautiful, cool evening, and besides, it was maybe 3-4 short blocks.
Except oh lord are those blocks ever long when you’ve been sitting for the best part of 3 hours. It didn’t help any that Hudson was being a bit of a butt. He’s afraid of big vehicles like trucks, and he got picked up (which he does not like) and put in one (which he did not like) and then picked up (which he does not like) to be put down. His post-fear reaction is almost always a bit of…being hyper. Which means he pulls on me and wants to go EVERYWHERE and smell EVERYTHING and is generally a handful to manage, especially for a sore, exhausted girl who has been in the heat way too long.
We got home at quarter to 11. I stumbled upstairs, wiped my icky sweaty self down with a wet wash cloth, and collapsed into bed.
It has been a long, LONG, LONG week.
And it’s not like we’re letting up. Ha. No, silly things that we are, we went off to a shop to get curtains (so we can try to close off our livingroom from the kitchen and the stairwell) and a bit of clothing for me, and then a stop for ice cream on the way home. I’m still all wobbly tonight, and rather pitifully glad that I have 2 days to get myself back in shape to go to work, because I think I’m going to need them.
Sometimes, life is just…exhausting. Well, I should say sometimes life is PARTICULARLY exhausting. When you wander around in a body with as many faulty bits as mine, every day is an exhausting day.