Disabled Living, Ehlers-Danlos Syndrome

My Zebra Stripes Are Showing

It’s cold and blustery outside and pretty much every joint in my arms and legs that could crack this morning, did. Today is voting day for the Federal Election here in Canada, but I voted in the advance polls so I – luckily – don’t have to brave the weather today.

Already did that on the first day of the blizzard.
But I voted!

Joints are not happy today. My ankle hurts. My vertebrae keep crackling whenever I bend over. My wrists hurt. I put too much weight on my right wrist last night and crunched something in there. Had to “happy hands” it out again. Fingers are sore today too, but that’s probably more the humidity than anything.

I’ve lived in really rough places with much worse heat than this one. I’ve been homeless more than once. I am not in any way complaining about my sound apartment with its central heating. Period. I am so grateful for this place.

But my zebra stripes are showing HARD today too. Every time I get down on the floor with the cats. Every time I bend over to put something away or in the trash. Snap, crackle, pop go my joints.

On Friday I was really surprised to find an appointment referral letter from the hospital for a Doctor in Rheumatology in December. Excited about that! I’ve been warned it could be anywhere between a year and 20 months before I get in to see Genetics (which is why my Neurologist got me an EDS kit from Invitae instead… he and the MS Specialist need to know before they risk starting me on any medications if it’s CIS/MS or EDS mimicking CIS/MS and they can’t wait 1-2 years before starting treatment), so I’m not holding my breath on that; but a referral up the ladder in Rheumatology means possibly, actual help!

Today I’ll ache, and I’ll crack and pop and crack some more when I move, but that letter shows actual momentum. And for that I’m grateful. Even if today my Zebra stripes are showing.

autism, Autistic Living, Disabled Living, Personal

I Know

I know that I come across as “weird” to NTs. I used to hear it from clients all the time.

Oh yeah… Saffron’s a little strange, but she’s good at what she does.’

‘Yeah sure, you’re a little weird but you know what you’re taking about.’

I don’t think people realize how much that hurts. Like, yes I know I’m not “normal”. I’ve had that held against me my whole life. But do you have to say it so loud, to so many people, and rub salt in the wound like that?

I also know that I’m very easy to take advantage of. I’m too trusting and too kind. I’m too empathetic. I let people get away with things no other person would because I feel sorry for them. I let people walk all over me. I let people take advantage and I don’t stand up for myself. Until I do, and then people are shocked and lash out.

I let people get away with negging me. I don’t hold what I know and how good I am at it in high enough regard. I don’t believe in myself.

I’m really good at what I do, but I’m no good at the people part. I’d need a partner that I really trusted to do the people part and act as a shield between me and everyone else.

And that’s, let’s be honest, probably not going to ever happen.

Because it would be so easy for that person to also take advantage. It’s happened before. I trust someone to come in as my partner on something and all that ever happens is I end up giving them money I never get back.

They say communism is a perfect system on paper. But ‘on paper’ doesn’t take the human element into account, and that’s where it fails. Because the second people’s egos and greed and unconscious wants get involved the whole system is corrupted and it just goes bad to the core.

People, in general, are like that I find. Everybody looks at themself ‘on paper’ and sees themselves as a pretty good person. But you put someone who is just naturally trusting and naive in front of them, and I still haven’t met someone who isn’t corrupted by the power that gives them.

And it really sucks.

I know I’m naive, and I’m too trusting, and I expect people to do the right thing and be kind and put others first and not take advantage. Because that’s what I do.

And it never stops surprising me when they, instead, take advantage.

And it never stops hurting when they laugh and say I’m weird.

Autistic Living, Disabled Living, independent living, Invisible Disablity, ptsd

A Woozy Day

Not feeling my greatest today.

Not sure why. Sometimes it just happens. *shrug*

Feeling weak and woozy. Faint-like. Also not having a great balance day, which isn’t great as a compound issue. You know … not the best combination.

Most of the time when I have a bad balance day, that’s all it is. Equilibrioception is off with no other real side effects. I’m clear headed and feeling good for the most part …. just … it takes three goes to get out of bed. *shrug* But some days? Some days are like today when my balance is off and I’m feeling faint and woozy. Those are not good days.

Those are days when you have to be very careful with yourself. When everything feels like you’re trying to move through water. One foot in front of the other feels like you’re miming Boris Karloff as Frankenstein’s Monster in the big, weighted boots. Sometimes it happens because I missed my iron a day or two in a row and my energy and blood pressure have both tanked (I have hypo-tension … yes on top of everything else … one of these days I should do a post where I just list all the things wrong with me lol), but I know I haven’t this time. Is it a side effect of overdoing it the first three days this week? That’s entirely possible, even though I was very careful to take yesterday to be kind to myself. So it might be a cause? It might not. Honestly, some times it just happens because it’s Thursday and my body feels like being an asshole. *wan shrug* Continue reading “A Woozy Day”

Autistic Living, Invisible Disablity, ptsd, self care, trauma recovery

Finally Taking The Time

So on Thursday I had my first trauma therapy session in a month, and my first of 2018. It was a  90 minute session too. First 45 was actual session. Second 45 was talking about what we wanted to work on for the next year. Honestly I feel like I bungled that second half. It’s a problem with delayed processing. I can’t give you a good answer about “what I want” right away. I need hours, or even days, to think it out before I give you a proper and truthful answer.

I’m keeping notes to bring to next session though as my true feelings crystallize and become clear. Hopefully I’ll be able to give a better answer on the 1st. Continue reading “Finally Taking The Time”

autism, Autistic Living, Invisible Disablity, masking, ptsd, self-acceptance

When People Say I’m More Autistic Now (Spoiler: I’m Not)

I get this a lot from my family, sadly. In fact they’re really the only people I get it from. The exasperated sigh and the question of ‘Why I seem more Autistic now than I did before?’

They never explain when ‘before’ was.
They never give data.
But they do make me question myself. A lot.

Sometimes I wonder if they’re just gas-lighting me and it’s more of the same. Blame the victim. Minimize the situation. Make them question their sanity, or in my case my truthfulness. But a lot of the time I DO question myself. I question my sanity. I listen to them and I doubt myself.

AM I more Autistic now? Or is it all an act? Am I faking it? Am I faking so well that I’m fooling everyone including myself?!

The answer is No, I’m not.

I’m not faking. I’m not lying. I’m not putting on a show.
What I am doing though is teaching myself – for the first time in my life – that it’s okay not to mask. Those lessons have taken some time. The programming and the conditioning is strong and it’s taken a long time to get myself to the point where I can let myself relax and feel safe enough to just be myself.

Flapping my hands isn’t going to result in my mother’s nails digging crescents into my wrists as she slams my arms down by my sides and yells at me. It’s okay to physically stim.

Playing the same song on repeat isn’t going to result in my ex yelling at me and getting ‘punchy’, even when I do it with earbuds in. It’s okay to listen to something on repeat (auditory stim).

Talking to myself or the cats in my own pidgin, and singing or saying the same sounds or words over and over isn’t going to get my mouth washed out with soap or get my face a smack. It’s okay to give in to the echolalia.

Giving myself the time to come down from an intense sensory situation like going to the mall or on a bus isn’t going to get me yelled at, or accused of being “delicate” or forced to keep doing it until I go into meltdown Stuffing a towel under the door and blocking out the window isn’t going to get me punished. It’s okay to be cognizant of sensory stimuli and do a little self care after something overwhelms me (in fact, it’s vital!). It’s okay to leave the situation and regroup (sensory overload).

It’s okay to chew. Chewing on safe things isn’t going to get your mouth smacked, or washed out with soap. It isn’t going to get you grounded. It isn’t going to get all your things taken away from you. It isn’t going to have you called out – for decades – and mocked for doing it. It’s okay to chew (oral stimming and oral self soothing).

When people say I’m ‘more Autistic now‘ they are usually questioning the validity of my diagnosis. Which means they’re questioning the validity of ME. Questioning the validity of my struggle. Questioning the validity of my worth. Making me feel like I have to prove myself, only they’re not looking for proof. They’ve made a decision already.

I used to try to bring these things up with all of them. My sisters and both my parents. I’d ask them if they remembered when I did this, and this, and this. My sisters always say they don’t remember our childhoods very well but they don’t remember any of that so it didn’t happen and they only know that I’ve always been a problem and very dramatic and they have no reason to believe me now. My parents either get sad, or angry and defensive. I honestly prefer the latter. That at least shows that there has been an “Ah-ha …. oh shit” moment. It all stings though.

‘You can either be disabled or capable‘, my sister said the last time I spoke  to her, ‘You can’t expect me to believe both‘.

But here’s the thing.

I was always Autistic.

My doctors – a group with over 50 years combined education and experience – all say  I am freaking text book and wonder how on  earth it took so long for me to get diagnosed.

And then I put the mask on and they go “Ahh”.

Over decades I taught myself, out of self preservation, to hide it. To mask. To keep it to myself and grit my teeth and ‘fake normal’. ‘Normal’ got you left alone. ‘Normal’ didn’t get you punished. Being ME, being Autistic, did. And it’s only been in the last 5-6 years that I’ve, slowly, taught myself that it’s okay to do those things that make surviving the world with this particular set of wiring doable and livable. I’m still learning to be okay with my limitations (which is hard to do when you don’t have a lot of support in the matter), and feel safe in being the Me that was always there. The Me that I used to only let out when I was alone in my bedroom and away from judging eyes.

So no, I’m not more Autistic than I used to be. I’m just as actually.

I’m just not hiding it anymore.

Disabled Living, Invisible Disablity

The Absence of Pain

I feel really good today.

Which in and of itself feels really weird. I got up late. Intense vivid dreams that included The Doctor and a widow’s walk, a girl named Amy Eire who looked like Ashley Clements, and a bunch of other stuff. It was bright and colourful and exhausted me. Thank goodness for my bite guard, because my jaw was actually sore from gritting my teeth while I dreamed. Luckily (thank you bite guard!) my teeth were spared.

Finally got out of bed, but didn’t actually notice that it was more of a hop than a careful push until after the fact. Fed the cats. Had a shower. Got dressed. Got things set up for my work today (I know I’m not allowed to work but I’m doing some stuff for a friend to help them save a butt tonne of money). Then I realized I still needed to take my pills and needed breakfast. Wee little bit of money left so I went down to Subway for my favourite. Made coffee here first though because it was after 11:00 and I wasn’t going to pay extra for coffee (also, no offence to Lisa and the Gang, but I make better coffee).

On the walk to Subway, my parka wrapped tightly around me because I was too lazy to zip it up in the elevator, I realized I was walking fast for me. Straight for me too. With a bit of a bounce in my step. All of which is weird, and in the length of the two buildings and the back alley between my door and theirs I did a mindfulness mental check. Why was I walking so fast? So straight? So bright eyed and clear minded?

Because there wasn’t any pain.

That is odd for me.
I’m in constant pain. If not from my senses being bombarded with TOO. MUCH. … EVERYTHING, then from the physical pain I feel on a daily basis. The last calling card of my ex-husband and his temper.

Yeah the mark that man left on me wasn’t just the PTSD. I walk with a limp now (and work damn hard to cover it up) and he is the reason I can’t bear to wear jewellery anymore. Anything binding or even close to my wrists or my throat sets off a panic attack.

Hopefully, one day, Trauma Therapy will help me find a way past that.

But today that’s not the point.
The point is that today, there was no pain! None in my ankle. None in my back. The soreness in my jaw worked its way out under the hot shower. I was walking straight. No hitch in my step. No zig-zagging as I tried to unconsciously course correct for the hitch. No pain stabbing my eyes from the sunlight getting through the low cloud cover.

You don’t realize the pain sometimes, especially when you feel it all the time, until you notice the absence of it.

Which is a WEIRD feeling.

But I’ll admit, today I’m in a good mood because of the lack of pain. I have more spoons today. I can already tell that. I have it in me to go pick up my prescriptions 5 blocks away at Portage Place, which is usually enough to take ALLTHESPOONS on an average day. I might even pop into the Bay to see about some Cruelty Free foundation going for less than I pay for Marcelle. *hrm face* I have a butt-load of work to do today. A massive laundry list of things to tweak and fix and polish. But I’m totally up to it.

Because today there is no pain.

Is this what normal, fully able-bodied people who don’t have broken bodies or other disabilities feel like all the time?! Geez. Nice work if you can get it, eh?

But if I’ve got it today, I’ll take it. I’ll use it! I don’t know if it’s even going to last the day, and I certainly don’t know if it’s going to still be here tomorrow. So I’ve got it, and I’ll take it and I’ll do as much as I can with it.

Because I have no idea how long it’s going to be until I wake up not in pain again.