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.

disability, Disabled Living, Invisible Disablity, self care

Unsexy Self Care

It’s a beautiful Sunday out there today, but I’m honestly feeling kind of poo. Didn’t have breakfast made until nearly Noon. Slow to start. Hard to even start anything. I’ve been talking myself through it a lot.

“Come on Saffron. Just one thing. Do the thing, and then do the other thing, and you’ll have two things done in your journal for the day! Just start the first thing. You can do it. Come on…”

And I’m glad the cats are the only ones who can hear me, because I’m sure I sound daft. Then again, they’re used to me talking to myself so it’s a ‘pay no mind, she’s just doing her thing again’ thing to them at this point anyways.

This is why I taught them both German. That way they KNOW I’m talking to them. English is mostly just noise. German is ‘Pay attention!’

But looking back at the day so far I found myself thinking about something both Dr P and my Godmother have said to me. Over the last 2+ years, I’ve come a long way. There are things now that I just consider ‘rote’ that were not that way when I first met with Dr P. A lot of those things fall under the category of Wholly Unsexy Self Care.

Sexy Self Care is what places like Lush try to bank on. Bath bombs and luxurious bubble baths. Spa days, and the North American misunderstanding of Hygge. Spoil yourself! It’s not indulgence, it’s self care! You need this!

Sure, that’s true. Sometimes I could really benefit from a couple hours in a hot, moisturizing soak full of bubbles and pink water and glorious scents. Sure! But that’s not all “Self Care” is.

Self care is forcing yourself to eat breakfast. Even if it won’t be in front of you until lunch time because the morning was lost to brain fog.
Self care is making yourself have a shower, even though you really don’t feel like you have the spoons.
Self care is doing the dishes so they don’t pile up and become an unsanitary mess.
Self care is pushing your way through the fog and the pain and making yourself a proper meal so you have good food in you, and enough food that your pills won’t eat a hole in your stomach lining.
Self care is taking down the trash when it is over flowing and stinky.
Self care is changing your bed linens because they STINK and it’s about time.
Self care is remembering to put your bite guard in at night so you don’t crack your teeth with the gnashing and grinding that follows you into sleep because PTSD is a bitch.

All those things are the unsexy side of Self Care.

People who don’t deal with chronic pain or executive functioning issues or brain fog may think ‘well, that’s just adulting’ and for them, they might be right. For those of us with depression, or executive functioning issues, or chronic pain, or chronic illness, or chronic fatigue, or a combination of those or any other issue that leaves you starting every day with far fewer spoons than the average person that’s not the case. To some of use they’re, each of them, mountains that seem utterly impassable. But you still have to climb them.

When I first met Dr P, I was crap at self care. I was barely able to function, even alone in the apartment. I often missed meals. I often missed pills. I often would forget to have a shower for four or five days at a time. I was living in a near-constant state of dissociative fog. When I first started working with Dr P, her first question every session would be, “How many days have you lost since we saw each other last?” And – it’s terrifying to think this now – my answer would often be, “I dunno…five?” or “Honestly I lost maybe a week. It’s been very stressful because *verbal vomit*.”

The last time I saw Dr P, back in December 2018, the answer was that I haven’t properly ‘lost a day’ since September 2018. Not since I started keeping my “One Thing A Day” journal.

And that means my Unsexy Self Care has gone way up.

The things that, before I started working with Dr P, were often forgotten are now rote. I have a shower every two mornings, but I always start my coffee before I get in the shower so when I get out breakfast is already partly made. I always make my bed when I get dressed now, because having an unmade bed actually bothers me (and it marks the line between “we lie in bed now” time, and “we go into the rest of the apartment and go about our day” time). I have breakfast every morning.

Most days I try to make a proper meal for dinner to go with my pills. Some days I fail and dinner ends up being a sliced up previously cooked chicken breast or a small steak and pita chips with tzatziki. On the really bad days I have been known to resort to half a bag of potato chips. Once a month I allow myself to order from Skip the Dishes. But most days it’s a proper Instagramable meal! And no matter what, I eat something because no matter what I take my pills.

I try to drink at least two, but preferably three, litres of water every day. And because of that I don’t get woken up in the middle of the night by charley horses anymore. Or get insane UTIs that take forever to clear up.

It’s boring, unsexy self care. But I’m getting better at it. So much so that a lot of things that were a struggle three years ago are just part of my schedule now. They’re rote now, but they weren’t always.

So here’s to all of you who, like me, have to struggle to just do the ‘Unsexy Self Care’ things like changing the bed linens, or having a shower. Don’t ever let anyone else tell you that these things are “simple” and “no big deal”, because you and I both know that sometimes things that are “simple” to everyone else can be unscalable mountains to you. Do your best. Try to be good to yourself. Be kind to yourself.

And remember that ‘unsexy self care’ is still Self Care.

autism, Invisible Disablity, memories, ptsd, trauma recovery

Getting my Autism Diagnosis (Twice)

**I know this is late for Autism Acceptance month, but this last month has also been heckin’ scary and stressful and I’ve just been trying to keep the depression and panic at bay. But I promised you guys the whole story, so here it is. If anything I hope it shows that being your own best advocate, having tenacity, and not taking NO for an answer CAN pay off. So don’t give up on yourself. You deserve answers. You deserve help. You matter. And don’t you ever forget that.**

When I was 29 I asked my then-Doctor to please send me to a Psychologist for assessment because I thought I might be Autistic. He ended up calling in the guy from WRHA (Winnipeg Regional Health Authority) who had done my Disability Assessment a year or so earlier. The guy who went,

“OH! You were raised in the WCG?! I’ve treated two other people who were also raised in the WCG! I know exactly what’s going on with you!”

And then misdiagnosed me.

That was the first time I almost lost Disability because he assessed me with the wrong diagnosis and my then-Doctor just wrote “See Assessment” anywhere he was asked to comment. They both half-assed it so badly the 5 person panel that assesses Disability claims originally threw me off Disability, and I had to hustle to get an appeal.

So when I asked to please be referred to a Psychologist who specializes in Adult Autism diagnoses, I was not expecting to see the only guy my then-Doctor seemed to have the phone number for through WRHA.

After 30 minutes he looked at me and told me he didn’t think I was Autistic. Or rather, he said ‘have Autism’. Identity first language wasn’t ever something he used.

He said, “You do have some Autism traits. A lot of them in fact. But you can’t have Autism because you’re too articulate, and you can’t have Autism because you’re a girl.”

I was 29, almost 30.

And even in 2010 I was pretty sure that this Psychologist did not understand how Autism works beyond Kanner’s original ideas back in the 1940s. Seriously.

So I stewed in that for a few weeks, and finally worked up the enormous amount of nerve needed to ask my then-Doctor for a second option.

And he sent me right back to the SAME. GUY.

So I decided if I was going to get any help at all, I needed to find it on my own. Without a referral from my GP my options were slim. To get a referral to anyone here in Canada, you really do need your GP to send in the request. It can take its sweet time, but it works. Eventually.

It’s better than what they have going down south of the 49th. Any time I get frustrated with it, I just remind myself of that and thank Tommy Douglas.

So I bounced around clinics. Getting to the top of lists, meeting them, explaining what I needed (a referral to a Psychologist for a late Autism diagnosis) and had 99% of those doors shut in my face too.

“You need to ask your Doctor for a referral.”
“We aren’t equipped to help you with that.”
“Ask for a referral from your GP.”

FINALLY I found Dr G. It was a wait to get on the list. I basically was part of his clinic hours, but it was help.

The first time I met with G. we had a long session booked. I can’t remember if it was a full 60 or 90 minutes but it was quite long. After introductions and handshakes I sat on the sofa and he sat in a chair with his clipboard and asked me about myself.

I had prepared what I was going to say. Keep it dense and information heavy. Don’t tangent off (which I did anyways … I tend to do that when talking about growing up in the WCG, I think understandably). After 25 minutes or so he hadn’t interjected or really said anything and I was starting to get annoyed.

“Well?!” I asked suddenly after I had stopped, given a good pause for him to interject, and gotten nothing. “Do you have any thoughts?”

“Oh! Yeah you’re on the Autism Spectrum. I could have told you that 10 minutes in, but I had the feeling these were things you needed to say.”
“What?” (You believe me?!)
“Yes. You have what we call Asperger’s Syndrome. It’s a form of Autism that doesn’t have a speech delay, but you obviously have struggled with a lot of other things.”
“…”

I was 31.

And it’s amazing how just hearing those words, “You’re on the Spectrum…. You have a form of Autism”, changed things for me. I quit smoking. which was hard because I started smoking at 14 by stealing my mother’s smokes in a futile attempt to hurt her when she was using me as a sounding board as she prepared to leave Dad. I stopped drinking too, which I’d never liked but I’d been doing also since I was a teenager trying to deal with the TMI/over-sharing bombs my mother kept lobbing at me to make herself feel better about what she was about to do. But once I had a word and an explanation for ME, I didn’t want to hurt myself anymore.

I also reached out to my Grandmother, who my mother had done her best to poison all three of us against, and I’m glad I did. Kookum was going through some seriously scary health issues at the time, and I’m glad I was able to be there for her in some small way. I also was able to reconnect with my only cousin – Jon – who is also on the Spectrum. I hadn’t seen Jon since he was, like, 13 or so, and reconnecting with him has been so special and so good. I am so lucky to have both of them in my life again.

I went from being alone, to having a family again. I went from hating myself and trying to hurt myself, to not having the need or want to do that anymore.

I quit smoking. I quit drinking. I reconnected with Kookum. I reconnected with Jon. I stopped hating myself. I stopped hurting myself. I suddenly understood that I was not ‘Demon Seed!’, and I was not a waste, and I was not lazy or evil or bad or deserving of all the pain and bruises (and worse) that had been inflicted on me… I never had been. I had always been simply an Autistic kid who was struggling. I was an Autistic adult who should never have been thrown out into the world on her own with NO supports Who Was Struggling.

Dr G. and I worked together for just over half a year. Meeting every 2-4 weeks. And he honestly helped immensely. Dr P has done so much too, so much more, but G. was the start of it.

And then the DSM-V came out and I was told that my assistance that was covering G’s time for our sessions was being revoked because my diagnosis didn’t exist anymore and I needed to get re-assessed.

Now that shouldn’t have happened. I should have been told that since Asperger’s Syndrome was now umbrella’d under ASD, my diagnosis was now ASD but I guess I just hit the top of the pile on the wrong government employees desk on the wrong day. That also happens in a single payer system. And it sucks.

Suddenly I was back at square one. With no supports and no diagnosis. And that definitely lead to a couple lost weeks (who am I kidding? I lost closer to 6-8 … it was a big blow). But when I came out from under it, finally, I knew I needed a plan.

I needed a new Doctor.
I needed a new referral. To someone who would actually listen to me and was working with an understanding of ASD that was more current than Kanner’s original paper.

***

An acquaintance told me about Dr Max at AHWC (Aboriginal Health and Wellness) and all the help Dr Max had given them. Helping them find a Psychologist who could and would work with them. Give them a proper diagnosis. Help.

So one day I finally worked up the courage to get on the bus and go to the old CPR station where AHWC is. I talked to the girl at the front desk. I showed them my Treaty card. I filled out all the paperwork. And I got on the list to get on the list.

Eight months later I got the call telling me I was on the actual waiting list now.

Three months after that I met Dr T for the first time. Our first meeting I told her flat out, “I need you to send me to Dr Max because I need an assessment for Autism”.

Three weeks later I got a call to book an appointment with Dr Max.
Two weeks after that we met for the first time.

Dr Max sent me to Dr AP at Health Sciences Centre (HSC) Psych Health for a proper assessment.

A week after our last assessment meeting Dr AP brought me in and asked me why I wanted an Autism diagnosis.

“Because it’s the only thing that makes sense. Because I’ve been diagnosed so many things in my life but this is the one that seems to actually fit. Because I had the answer and it was taken away from me, and,” and I started to cry, “I just want to know… I want to have an answer WHY things have always been SO HARD for me.” and I broke down into quiet tears.

Dr AP leaned forward and told me, “Well, I can tell you today that you… have Autism.”

I was 35. A month away from 36.

And for the second time in my life I felt that wash of relief that comes from knowing the word, and having the word, and having that to clutch to my being and knowing that it made sense. That I made sense.

The assessment report was sent back to Dr Max, with a note that I also needed to be assessed for PTSD (which I do have). I filled in the diagnostic questionnaire’s for PTSD and apparently “passed?” with flying colours. Then Dr Max put my file in front of Dr P, who apparently read it and said, “She’s waited long enough.”

Eight weeks after Dr AP had confirmed my ASD diagnosis, I was sitting in Dr P’s office at the Grace for our first session.

***

There have been some hiccups along the way. Dr P went on Maternity leave back in December, and I’ve been slowly getting used to Dr W instead. Disability has been all up in the air and just – as Dr P puts it – “re-traumazing [me} every month!”

But things are also a lot better now. I actually have a medical team that is working with me. I have Doctors who listen to me and fight for me and care.

Right now I’m staring down this triple barrel of “Is it MS? Or is it hEDS? Or is it vEDS?! Come back in five weeks and maybe someone else will give you some more information. Maybe“, but I’m honestly doing better than I would have a few years ago. I have a medical team that has my back and a GP who is willing to get me referrals to specialists who can (eventually… hopefully?) shed some more light on things. I’ve never had that before.


General Update, Personal

Haven’t Been Around For A While

I haven’t been around for a while. Sorry.

The last month or so I’ve been taking care of Dad, which is hard for a lot of reasons. The biggest being he’s in the far south of the city and I’m downtown and it’s 25 minutes from his place to mine by car. 90-120 by bus if I make all my connections just right.

It hasn’t been easy.

But also neither of my sister has popped their heads up or offered to help either. They both know he’s struggling. He’s mentioned it to them both. Neither has bothered to offer to help though. Because why would they? They took the free rent and free education and free access to a car and easy access to pocket money until they were nearly 30 (or over 30) and now they’re just waiting for him to die.

I actually had the guts to remind him of that a couple weeks ago. I was helping him with his back and helping him with his shopping, and we were in the van heading back to his and he said that he could always ask my sisters for help if I “wasn’t up to it”, and I actually reminded him that both my sisters, at multiple times over the years each, have told him and anyone else who would listen that the second he can’t take care of himself anymore they’re putting him in a home.

“Well, a home is expensive,” he retorted.
“Yeah. I know. But you’ve also put my share of the estate in Anne’s hands, so Anne just inherited 2/3. They’ll use my third to pay for the cheapest home they can find and keep their shares of the estate intact. So don’t tell them how you’re doing. For your own sake. Please.”

I actually said that. Out loud. That is something I’ve said to Dr P, Dr W, and my Godparents all, but I always follow it up with, “And that’s something you think and don’t say. Because it’s Dad.”

But I actually said it out loud.
Still kind of in shock about that to be honest

Not that I think he’ll do anything to fix that. Which means the first thing I’m going to have to do after he passes is take my sister to court to rest control away from her. Not looking forward to that.

But I said the words. *deep breath*

Anyways….

I’ve spent the last month (or really the last 3 1/2 months if we’re going to be perfectly honest) taking care of Dad. Seeing him a minimum of twice a week. Calling him twice a day (at his request). Making sure he eats. Making sure he’s exercising as best he can. Making sure he’s drinking his water. He’s even having me go with him to Doctor’s appointments now.

*long sigh*

It leaves very little space/time for me to take care of myself. I haven’t shot a number of videos I really need to and am very behind on. I have three or four blog posts half-written in my head that I haven’t had the mental time and space to sit down and write.

Sorry. I’m trying.
This week I don’t have anything really until Wednesday. Save calling Dad morning and night to check in on him. Which always take about an hour or so to come back from. Doesn’t leave a lot of mental time/space to get much else done. But I’m going to try. It’s April, which means Autism Awareness Acceptance month, and I am very behind on both posts here and videos over at the YouTube channel. So I’m going to try and spend the next couple days catching up on those.

And thanks for understanding (at least I hope you do).
*tired smile*


Growth & Healing, Personal

The Complicated Relationship with my Dad

Yeah yeah. I know. Daddy issues *eyeroll*. But also just let me write here, eh?

My relationship with my father has always been complicated. On one hand, he’s my Dad. I love him. On the other, he’s done a lot of physical, and psychological damage to me with abuse. On one hand he’s alone now and needs someone to just look after him. On the other hand, he’s one of the big reasons I go to session and trauma therapy multiple times a month. On one hand he’s the man who has thrown me away six times throughout my life and left me at the mercy of some really not good people. On the other hand, he’s always come back.

So things are complicated.

Lately I’ve been doing my best to look after him though. Back around Christmas he noticed a really itchy, dry spot on his ankle and it bothered him enough to complain about it but he just waved me off when I said, “Dad, go to the Doctor.”

And then it exploded all over his body.
Not good.

Doctors who don’t know my father suggested scabies. I understand that STI infection rates among seniors are stupid high, but my father doesn’t believe in anything past second base without a wedding ring, so… no. There was a concern that it might be shingles. In the end a biopsy showed it was not insect related, not cancer, not fungal, and the final diagnosis was just a really bad case of psoriasis.

So for the last six or seven weeks or so, I’ve been going over to Dad’s twice a week to rub petroleum jelly on his back to just try and keep the scale and the scabs from cracking (because secondary infections are not good), and monitoring his progress.

I’ve also kept telling him, “Dad, go to the Doctor”, which he finally did do and finally got two courses or prednisone that seem to have rebooted his immune system. When he went to his GP at first he tried to pass the buck to me… “Well my daughter said that…” and “My daughter thinks that…” and “My daughter suggested that…” and his GP apparently told him, “Listen to your daughter. She’s giving you good advice”.

*first pump of vindication*

Since his GP said that, he’s been listening to me a lot more, which is good. He’s drinking more water to be kind to his kidney (yes, singular), and eating small meals throughout the day to keep his blood sugar levels in the green. He’s not getting mad at me when I mention maybe doing a sleep study and getting a C-PAP (he’s had apnea for a long time, and doesn’t treat it). He’s not pushing himself and hurting himself as much. But he’s also starting to realise that he’s not 40 anymore (I keep pointing out to him that I am almost 40 at this point) and that his body isn’t bouncing back from things the way it used to.

But he’s doing better and taking better care of himself. The psoriasis is pretty much under control at this point. He doesn’t look like he has scales on his back anymore like he did eight weeks ago, and because of the petroleum jelly we’ve managed to keep scarring to a minimum.

My sisters must be mad at me right now. The last time I spoke to my middle sister she said, “Dad’s horrible to himself. Let him be. Let him kill himself, Sascha. We’ll get the money faster”.

Which is yet another reason why that was the last time I spoke to my sister. And I’m sure she’s not impressed with me at the moment.

And then he bought me a bed. It’s the first brand new bed I’ve had since they moved me out of the nursery in 1983. The new bed is amazing and I’ve been sleeping really well the last three nights, but it really hurt him to get it. At the furniture store we happened to get the newbie, and it took over ninety minutes for her to learn how to punch the sale into the system. It had to get punched in three times before it was right ($3400 for a clearance mattress? I don’t think so. Try again). In that time THREE senior reps, including the store manager, came to help and then had to leave again. Honestly at the 35-40 minute mark I was ready to go, “You know what? I’ll survive without it” but Dad made me stand down. Over an hour and a half later it was done. BUT, in that over an hour and a half absolutely NO ONE offered my elderly father a fucking chair. Not the sales rep. Not the two senior reps. Not the manager. Instead he was made to stand on the concrete floor. For over and hour and a half.

And now we’re eight days after the bed was purchased, and my Dad still can’t bend his knee enough that he can sit comfortably in a chair, or get in and out of his minivan. For most of the last week he has barely been able to walk.

*long sigh*

Yeah, I’m still mad. I think rightfully so, honestly. But being mad doesn’t help Dad right now.

Over the weekend I ordered groceries delivered to his place for him because he was running out of things and starting to freak out because he couldn’t get down the stairs to get in the van to go shopping. And I put it on my credit card, which I absolutely couldn’t afford to do, but he has food now.

And I’m calling him twice a day right now just to check in. Not because I need to check in, but because he keeps asking me to. He says he really appreciates just having someone check in on him and just having someone to talk to when he’s trapped in the house.

“I really appreciate you doing this”, “thank you”, and “I love you too” are not words that one easily gets from my father, but I’ve been hearing them at least once a day the last 8 days. And that is both sweet, and kind of scary.

So yeah. It’s complicated.
On the one hand there are so many things that have happened over the years that pretty much anyone who knows me tell me I absolutely have the right to hate the man for. But on the other hand, he doesn’t have anyone but me right now. He’s alone, and he’s unsettled, and I get that. Taking care of Dad comes from the same place as taking care of Dottie and Bennett with all their individual extra issues.

I’ve been thrown away, and I’ve been alone and had no one to turn to, and I never want anyone to feel like that if I can do something to help it.

Even if the person who threw me away is the one I’m helping now.