She could never let me sleep.
That would put us
on equal footing
and allow me
to be fully awake
she would sneak into my room,
shake me awake
and cry loud, calculated tears
while I practiced
hiding my true feelings
and tried my hardest
to become a limp, gray rock
held barely out of reach.
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.
Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).
I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.
Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).
Tomorrow morning is my SSDI hearing. I’m super anxious about it. I feel a little nauseated just thinking about it. I’m afraid I’ll do or say the wrong thing. I’m afraid I’ll burst into tears and feel embarrassed. I’m afraid I’ll somehow misrepresent my reality. I’m afraid the judge will say no and ruin my foreseeable future.
I know the judge probably won’t even give a straight “yes” or “no” answer tomorrow, but that makes it even worse because then I have to wait who-knows-how-long in suspense and worry. I hope I’ll feel better when it is over, but knowing me, I’ll probably spend the next few months picking apart the experience and everything I think I did wrong until I get an answer.
Today was a rather stressful day since I had an appointment with my lawyer for my SSDI hearing next week, so I didn’t have time to plan a full post, but I did want to participate again in the Twittering Tales picture prompt by Kat Myrman. As I explained last week, this writing challenge is to simply write a short story, or poem, or whatever you want as long as it is under 280 characters (the length of a tweet).
Here is this week’s picture prompt and my entry for this week below (photo from Pixabay):
My mother considered naming me Candy, but worried that if I turned out to be fat, it would be more ammunition for the bullies to use against me.
I didn’t turn out to be fat, but I did turn out to love candy – except for those little Valentine’s hearts.
All sugar, no substance.
I’m a paper doll
with third degree burns.
Dress me up,
make me pretty,
and please, simply ignore
all the raw, peeling flesh
falling onto the floor.
(Poetry by Maranda Russell, marandarussell.com)
Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.
I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.
I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:
I’ve had a rough few days. I think the main problem is that I’ve been out of my anxiety meds for a while because Buspirone is on national back-order for some reason, and my pharmacy doesn’t know when/if they will get it back in. I contacted my psychiatrist today to ask him to prescribe something else, hopefully he will do so soon. I was going to try to just hang on until my appointment with him at the end of the month, but I am having some real anxiety issues cropping up without my meds.
For one thing, I’ve been having some body dysmorphia issues, which happens now and then. I’ve heard that issues like these are common among high-functioning autistic people. I’m not trans or anything like that. I don’t want to be a man. But, for some reason, ever since I hit puberty, I’ve always felt kind of uncomfortable in my own body. I’m not sure why. I don’t think I’m extremely ugly or anything like that, but it is like there is some kind of disconnect in my brain when I look in the mirror. I feel like my body looks wrong somehow or like it isn’t the body I should have. It is hard to explain.
I think part of it has to do with always feeling unfeminine. Like I said, I don’t want to be a man, but I’ve always felt like I’m not very good at being a woman either lol. I feel like a tomboy, I always have, yet sometimes when I look in the mirror I look more like a woman than I feel. It is weird. I also have always wished I was thinner, more flat-chested, and athletic-looking overall, but my genes just don’t cooperate with me. It is funny to me when I hear women saying they want bigger boobs. I’m always like “why would anyone want that?”, but I know everyone has their own insecurities, and some people obviously have different ones than I do.
Ugh. Turns out we have to replace the entire water heater. Over $1,800 (which we can’t afford)! This seriously sucks. To make matters worse, the guy couldn’t put the new one in until today, so we had to go all day and night without any water at all (they had to shut it off entirely due to the enormous leak). The guy said he would be here around 11am to put in the new water heater and it is now 12:30 and no sign of him yet, although he says he’ll be here soon.
Due to all this I am grumpy and feeling yucky and just want to whine lol. I can’t even flush the toilet!!! I know this may seem crazy to non-autistic people, but the huge change in my daily routine has driven me freaking crazy and brought on a nasty IBS flare. God, I hope this is over soon.
This seems like a good time to remind everyone that I do have a PayPal donation button set up on my blog if anyone ever wants to send a few bucks to help out or support my blog. You can donate any amount and don’t even have to have a PayPal account of your own. You can find the button on the right side panel of my blog home page, or access it through the Support My Blog page. If you are able to help out, that is great, but if you aren’t, your kind thoughts and well wishes mean the world to me.