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!

Anyways…
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.

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disability, Disabled Living, eds, Ehlers-Danlos Syndrome, Invisible Disablity

Imposter Syndrome (Not Disabled “Enough”)

*This started as a post on my Facebook page, but I decided to expand on it here.

Some days the imposter syndrome really kicks me in the butt, especially with the hyper-mobility. I mean, it often kicks me in the butt for other things (Neurodivergence, social anxiety, PTSD etc) but the thing that it really kicks me in the butt for recently is the pain.

Some days, I can’t walk across my living room without my hips threatening to slip on me. Some days I can’t even go into the kitchen to make coffee without my cane. I have “house canes” and “outside canes” at this point. Some days my shoulders and elbows are not in any shape to hold me upright with a cane, so I just sit and lay on the floor with the cats a lot. Those are sitting on the futon with the old hospital table my Godmother gave my Dad (and Dad gave me) and keeping a chair in the kitchen so I can make the cats their meals days.

But I still feel like an imposter. I have met so many other people in the EDS community who have it SO much worse than me. A very good friend of mine (we say we’re Twilight Zone twins because of the crazy number of similarities in our stories) also has EDS and they need a back and rib brace; they dislocate their ribs that often (for me, it’s more the clavicle that was broken when I was a teenager. That thing will twist if you look at it funny).

Regardless, I often find myself feeling like I shouldn’t be talking because my pain is not nearly that bad. Because I don’t have all the braces (though, honestly, I could use some of them). But while I’m in constant pain, every single day, it’s manageable. For me at least.

There’s that joke meme about a demon possessing your body and going, “OH HECK! What is that pain?! Why does it feel like this?!??” and the possessed going, “…Yeah it does that. Caveat Emptor buddy. Enjoy!”

That comes to mind a lot for me lately.

Right now my Doctors are banding together to help me get an electric chair, because I can’t even make it to the curb, with my cane, on the ice, to get in a Handi-Transit or a taxi, let alone to the end of the block to the bus stop. I mean, even Neurology – and it isn’t even his JOB to worry about connective tissue issues – is throwing his name in behind the bid for a chair, because he sees how badly things have deteriorated in the last year. So we’re trying to get me a chair, so I’m not completely homebound this winter. So I have some modicum of independence and self sufficiency and can just hold my head up.

But then I think about a fellow zebra I know who lives in a neck brace because they literally cannot hold their head up…… *shrug and frown* and I get hit with a right-hook of “you’re not disabled ENOUGH! How dare you complain how dare you ask for help how DARE YOU?!??”

My father said that to me once when I was in my very early twenties. I was trying to tell him about the things people made me do when I couldn’t safely live with him, and his response was, “How DARE YOU!”

I still hear that in my head a lot.
That it was under duress, didn’t matter.
That people did horrible things to me, didn’t matter.
That I had to do bad things to other people (to “earn” a roof over my head)?
HOW DARE YOU!

That response is still rattling around in the back of my head when I dare to think of myself in the same light as other disabled people. Other people’s pain is worse than mine. Other people are more immobilized. Other people need more help than I do. So how DARE I try to sneak myself into their sphere. *frowns*

I know that’s wrong.
Logically I know that’s wrong.

Honestly I can’t tell you the first time I dislocated a joint, because I wasn’t allowed to be hurt.
“Walk it off Sascha.”
“I CAN’T WALK!”
“Oh for the love of–” *grabs me by the scruff of my neck and pulls me to my feet. When I fall I get hit for being a drama queen. I get left behind with a shared eye roll between my parents, who go off with my sisters*

I remember that happening at about eight. I know it wasn’t the first time either. I can’t remember when the first time was though.

I remember dislocating fingers and shoulders and ankles and elbows. I remember that horrible pain that sucks the breath right out of you that I’ve only realized is how it feel to dislocate your ribs. I can’t remember the first time I dislocated a rib though; I’ve been doing it for so long. And I was always made to just suck it up and work through it. Work through the pain. Go to school, regardless. Go to church, regardless. And then when the pain would finally disappear, it was such a relief and I just thanked my lucky stars. Until the next time.

When I told my parents about the pain, or the clicking, or the inability to move my fingers or toes or arms or put weight on an ankle, I wasn’t ever taken to the Doctors for it. The family GP was an idiot though, so even if they had I doubt now I would have found any help. When I told them I was more likely to be questioned and doubted; poked in the injury until I screamed and then told I was being a drama queen and getting a cuffed ear for good measure.

So here I am at 8 months until 40, still doubting myself and my pain. Still doubting that I deserve the care and medical aids and help that I so obviously do. I’ve spent my whole life having my Autism, and my hyper-mobility, and my anxiety, and my trauma minimized and held against me that I honestly struggle to own it myself.

Every voice in my head tells me I’m a drama queen and an Imposter.
Sascha’s a liar. Sascha tells stories.
This is just another one of drama queen Sascha’s stories.

But it’s not.
And I have to learn to allow that to be the truth.

I can’t walk 10 steps, let along 10 metres outside right now on that ice without falling. Even with my cane it would be tricky at best. I can’t walk to the Giant Tiger two blocks away for milk on a nice spring day anymore. I struggle to cross the street without falling and risking getting hit by a car most days these days.

I need help.
I need that chair.
I hope Hope HOPE that Ottawa will okay it for me.
It’s a Hail Mary pass, but I hope they say yes because if they don’t I’m kind of trapped here.

On disability.

With no way off.

Yeah.
It’s not good right now, lovelies.

I’m trying to own that. Be okay with it. Be okay with saying it out loud and not holding my disability and my pain up against other people’s. Trying. It’s not easy. Those ugly minimizing voices in my head aren’t making it easier, but I’m trying not to listen to them.

I’m in constant paint. Ever day. I have been for so much of my life that actually having a moment of being Pain Free last year lead to a full block anxiety attack because I thought there was something WRONG.

Letting that sink in, internalizing that… that’s taking some work too right now.
But I’m trying.

Disabled Living, independent living

Do the Hokey Pokey (Not Up to the Vacuum Today)

My nerves aren’t up to the noise of the vacuum today, but the wall to wall is in need of a once-over.

This was my dilemma this morning.
Luckily, I have a secret weapon.

My Hokey!

Okay, so it’s not a Hokey brand blah-blah (it’s actually a Rubbermaid 7 brush rolling manual sweeper), but I grew up calling those a Hokey.

In fact, when I was wee, I honestly thought that the song “Do the Hokey-Pokey” was about cleaning. I mean, it makes sense, right? You poke the Hokey into corners and turn yourself about to make sure you get everything and… Yeah. That’s what it’s all about!

I was six when I was corrected on that misinterpretation. But for an Autistic kid who has a very small fishbowl of experiences to work from, and a very literal and logical way of thinking it made perfect sense. Still does honestly. Whenever I pull out the sweeper, I suddenly get that song stuck in my head and honestly it’s still there right now. I’m going to have to turn to my music collection to shake it loose once I’m done writing this.

The point is (beyond sharing of the cute anecdote about the Hokey) that there’s more than one way to do a thing. My carpets really needed a going over. They honestly really need the vacuum is what they need, but after the trip to the Post Office yesterday, and my nerves in general lately, I am just not up to the noise and stress of the vacuum cleaner. Bennett hates that thing. It’s loud and it’s scary (ze Frank was right on the money when he called it the monster vah-koom, that screams and eats at the same time) and he hides under the duvet and shakes while I’m using it. And for a good forty-five minutes to an hour afterwards too. And I am just not up to that.

The noise.
The stress.

So instead I pulled out the Hokey (which isn’t actually a Hokey, it’s a Rubbermaid Sweeper, but we’re just going to use Hokey for the rest of this post). The carpets are much cleaner. A lot of kicked up litter and grit and cat hair pulled up. Had to empty the thing twice. And, sure, it’s not perfect; but it’s better. It’s passable. It’ll do until my nerves and sensory thresholds and legs (that walk yesterday really did me in) are doing better. Then I’ll vacuum.

But until then, there is no shame in doing the Hokey Pokey.

Disabled Living, self-acceptance, Self-Sufficiency

I Need to be Kinder to Myself

I need to be kinder to myself.

So often I look at my “One Thing A Day” journal and feel like I didn’t do anything despite the third of a page being full of things I did that day.

Today I walked down to the post office and returned a package for Amazon. Walking there I was mostly fine. I thought I’d be super smart and bypass the RBC offices and the escalators and the ramp by the Transit office and just walk up to the next entrance.

And then once I was inside I realize THAT was the one entrance that didn’t have an elevator.
There are few things more humbling than being under forty and having to take the stairs one at a time, dragging your trolley behind you *thud… thud… thud…* down the stairs like you’re eighty. People either stare like you’re drunk or avoid you with pity in their eyes.

Made it to the post office, and talked to one of the cashiers at Shoppers on the way out. That was my social interaction (not including the cats) for the day.

Walking home was harder. My legs felt like they were encased in cement. Like they were hard to move the same way they were when my B12 tanked last, only without the numbness and the pins and needles.

I had to stop three or four times and just lean against the Curry and the Argyle and a sign post. But I got home.

Sufficed to say, my legs are shot for the day.

And yet, I feel like I didn’t DO enough. And I really have to stop that.

Fact is…

Fact is I am an Autistic with severe anxiety and c-PTSD who was told this spring that I also have Multiple Sclerosis AND Ehlers-Danlos Syndrome (though we won’t know what flavour until I get to the top of the list for the Geneticist… in about a year… if the Tories don’t cut health care anymore than they already have).

I don’t know that I’ve properly internalized that to be honest. But I need to.

Two years ago, I used to walk everywhere. Even with the ankle, I could top 15,000 steps in a day. In the summer heat. On my own. Now I struggle to make it to the post office at Winnipeg Square and back. Two years ago I had no issue walking to a Doctors appointment at AHWC. Now I struggle to make it to and from Giant Tiger two blocks away without either hurting myself or falling on my face into traffic.

And I’m on Disability, so there is zero chance for me to get proper treatment when MS treatment runs upwards of $17K a year. No, I’ll be left to my own devices and it will progress and it will get worse.

Also the EDS running roughshod over my joints isn’t helping either. From day to day I don’t know if I’m going to pop a hip or a knee or an ankle (and I really cannot afford to pop the left ankle after everything it’s already been through). From day to day I don’t know if I’m going to be in screaming pain with the right shoulder and scapula by the end of the night, or not.

And I’m on Disability, so there is zero chance for me to get proper treatment when the Province has cut prescribed Physiotherapy down to pretty much zero. You get Physio after hip surgery. Until you can walk again. No further. Everyone else is SOL.

So… yeah.

And still I look at my journal, the third of a page for the day so full of things done that I’ve had to double up on lines and write things in on the diagonal, and I still have that voice in my head telling me that I was a waste today.

I need to be kinder to myself.

I need to give myself credit for the things I actually do get done, and celebrate that. Yes, I’m slower than I used to be, and I was slower than most people to start with, but goddammit I have good reason for that! Multiple. ReasonS with an S at the end. Plural.

I am trying my best, with zero help, to keep my head above the surface in a BIG bowl of Alphabet Soup.

ASD. c-PTSD. MS. EDS.

And that’s not even counting the Anaemia, B12 deficiency, and Asthma.

Dammit.

I need to be kinder to myself. Because I am doing amazing for someone doing it all on their own. With zero resources. Zero help. Zero therapy.

And yes I remember Dr W, but we’re going another month between sessions and let’s be honest, it’s not actually “trauma therapy” with Dr W now is it?

I’m doing all of this, and managing to keep the apartment from falling apart, And fighting to keep myself from letting the PTSD have its way, AND I haven’t had a proper session since December of last year, and in the last 18 months I’ve gone from fine, to unable to walk 2 blocks each way without risking hurting myself.

I’m doing really well, considering, and I need to give myself credit for that!

I just… I need to be kinder to myself.