Thursday, September 25, 2014

Entry 28: Almost There ...

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Jan. 1. 2013

What's happening Rose? Facebook always asks this question every day. Often, I’m not at a loss for words to respond nor would I share it and then have everyone ignore it and not care. That's what Facebook makes you feel like at times. It can be a bit superficial. Despite it, I feel like spilling something, so I guess I’ll journal it.

Hello Blogger. Well, I pushed myself so hard today, to get it together… feeling weak and woozy from a bad flu yesterday in which knocked me off my feet. Struggled to put away a heap of laundry, had a little pity moment about not ever seeing my favorite musical onstage despite wanting to basically my whole life. Whoops…a look for a little musical break from cleaning, that caused me to stumble upon information in which turned into a PTSD moment of all the things.

I didn’t ever get to see “Les Mis” in my hard knock adolescence when I had to survive and never graduated…Yeah, poor me. I’m half serious, half sarcastic; as I try to scold myself in remembering that at least I'm not a dying, enslaved person in a developing country, far worse off.  I need to remember this.

It still feels like I’m living through a hell of some sorts, in this body that feels like a lemon, and aches with pain and fatigue, without dreams in reach. I’m bored, I’m also stressed always barely scraping by, and I want some diversion. I want room to breathe. I want something to make me “happy” again. I miss my music, but I feel like I can’t…

Living in, keeping up with, and ultimately succeeding in a modern “developed” country, where expenses of living are sky high, and especially if you don’t come from a fortunate background, is also hard. It’s not as hard as some things, but also hard. Apply pain to it, and yeah. It’s a different but also tough battle.
I have to remember that I’ve come far, and we’ve come far, from the dark days of struggling to stay afloat in the big Vancouver, in absolute terror, and in a nightmare of closet self-medicating too horrible and personal to speak of at this time.

So then, after the laundry start, I wiped the counters down. I bent over many times with a stiff and sore spine, to pick up a few littered toys and particles. It all happened in slow motion, feeling like I wasn’t getting anywhere, or not very far anyway. Ugh. Chronic pain issues and dyspraxia are a distasteful combination.

I don't care if this sounds harsh or princess-y. But what I’ve said many times over the years, and especially recently with this fibro/ arthritis deal is: what I would give for housekeeping help! Ideally, it’d be daily, not so I could be totally lazy, but so that he/she would help me with the chores that really hurt and are heavier.

I'm not the only one in this world who desires such. I get that. We live in this future where help is paid, and/or part of socialism…but the cuts make it so that arthritis and fibromyalgia aren’t nearly enough. You need to be unable to move whatsoever, and have no family.

Well, my extended family can’t really help either, but you have to have literally no one. Or have a multitude of very serious problems, such as needing to give oneself medication but not being able to move in order to get it. Also, with a couple it’s harder than a single parent...but even then.

We might get a bit of help soon, and a bit is better than nothing. I need to somehow get my body working better; maybe I’ll figure it out in time. Maybe I haven’t just accepted the pain. Pain is hard to treat fully, without stronger, conventional medications. Those medications only get me back into addiction tendencies, which is bad (it’s happened before) or they don’t work, or have awful side effects. I need to learn how to manage in other ways, though it’s stressful attending groups, and processing information in ways that are different than how I grasp it.

My husband had to qualify as certified Asperger’s’ with Adaptive Functioning challenge, for the system to recognize that the person alongside me is also challenged. It’s not just AS he has though, he’s very underweight and fatigued, but they cannot find out why that is. It’s so frustrating.

It’s hard for people to get it; how somebody like me could be so precocious with words, have a decent intellect, and yet have challenges. Basically, people don’t get Asperger’s’, nor do they get Fibro. I “get” to have a double whammy of what they don’t get. Lovely.

People have a hard time believing my challenges, that I do have them. As an overview, that’d include:

Sensory issues…Visual; too much bright light, too many moving bodies, too much unrelated clutter… Sound; loud and/or unpredictable noise other than music…Tactile; clothing needs to be soft and if tight, very stretchy…Touch; I will hug because I care to, but I make it quick because I also have too much empathy and feel another’s’ energy so much that it may overwhelm me for awhile later. And Smell; my sense of smell is just way too strong…what can I say? The Fibro makes this worse, and if the sensory gets too offended, so does the pain…and it can go on.

Other than sensory issues, there’s more: short-term memory problems, learning/processing differences (some of which I don’t yet fully understand), dyspraxia and clumsiness, which puts me at risk to hurt myself if I’m not cautious (which I always have to be thanks to that.) Dyspraxia, to be technical, is the difficulty coordinating motor movements; particularly without being shown specific instructions that’ll be consistently predictable. Something like driving a car is hard, and I couldn’t do it. This embarrasses me, to be honest.

Lets’ add varying communication difficulties that can’t be elaborated on here in short, other than to say that they have always caused me to have difficulties with getting into relationships, communicating to get needs met, feeling isolated, lonely and being either socially perfectionistic or hiding myself away due to feeling inhibited and afraid to express my true and odd self.
I’ll even add another “Etcetera” to this list.
Ok. What a headache. I better stop.

Yes I’m lucky to have gotten recognized and diagnosed at all, in lieu of the fact that many women like me slip through the cracks very badly. There are many struggling like me without a diagnosis, some are even deceased, due to comorbid complications whilst the notion of being an
aspie wasn’t even on the radar, whatsoever. I don’t know how they do it, if they’re still living. I think that many are are out there, fallen very badly, even to the point of things like homelessness.

It’s just that I feel like an injured but determined dolphin. I did the extreme hoop-jumping required to save our very close little “aspie” family, which would be broken hearted if broken apart. But man I fought so hard, and had to go through hell first, hitting several brick walls in order to see something’s really not right. It was ridiculously hard and did it need to be that way? I am now in extreme burnout.

I can dwell, but I’m hoping there’s a purpose in all of this… somewhere. I just want to rest now. Rest meaning that; I want more time to rest and to thrive…not just survive. Soon is on the horizon, I hope. Many times I’ve asked myself; will I get there before I collapse?

Although in the end, I know I’m strong and that the universe and spirit will be on my side if I believe it to be so, and if I keep my faith.

Apparently this support program is supposed to help people like me “actually reach their goals”…if they haven’t broken apart first, but been near broken, it seems.
There’s very limited seating in this program, and you have to fight to get in. Believe me, I fought. Whoops. I sound like a freaking broken record.

I do like the two support workers that have recently come in. I get along with them both ok, and they’re different, so it’s good I’m starting to feel comfy whereas at first.. I wasn’t even used to any kind of help like that; I was a bit dumbfounded.

I still don’t know exactly how this program works though, and I’m not sure they do either. The main things I want seem to still hang in the balance.

I’ve used, especially in the past, unwise and detrimental methods of pushing dealing and myself. I’m used to adrenalin. When I was going to lose it, I self medicated instead. I’ve had counselors tell me that I could have been possibly preventing a complete and massive meltdown/breakdown, though I don’t want this to totally excuse it. It’s hard to talk about.

Aspies do have meltdowns and the adult ones are especially complex, as well as varied. That’s a whole other essay; but I mean, I was preventing the big ones in the only way I knew how at the time. That sounds like a horrible excuse I know, but there is some truth in it. Was it fair for me to be pushed, by ignorance and lack of help/services, into this corner of developing a self-medicating addiction at the expense of my long-term health, for the short-term prevention of what’d land me in acute trouble and misunderstanding/persecution? No. Pity pot time again, here!

I still open my cupboard to stare at the boxes of tea that read, “Contains caffeine”…although its’ the least of the evils of the past. I’m not talking about anything illegal here, not that it’s not all the same in the end. I was always too chicken for the “illicit”… and probably too sensitive. Yes, I dabbled a bit in my late teens, but it scared me. I was way too sensitive to “handle” it.  

What I’m talking about are drinks, and Rx, now that I’m daring into specifics…and my tolerance was low. So I was like a little kid getting stoned and blunted on Dimetapp, and it worked when I was really cornered…but those things can be just as horrible for you, so who am I to talk? Help just wasn’t there and nothing, nobody, understood what was going on. Not even me. Not until my child was diagnosed with autism. Then it all made sense…

Well, help has only begun. I’m feeling it’ll reap what it’s sowing soon. I hope anyway. In recovery there's often a pattern of two steps forward, and then one back thing.

I have to keep in mind that it’s not as if it’s this big rescue team, it’s just a bit of support a couple times a week. It’s limited because none of us have fully grasped optimal support for aspies, nor does the system adhere to it.

I still have to be strong and put in my efforts. I’m looking forward to the restorative yoga coach coming in the New Year, after yet another strenuous but necessary (and hopefully final) move to another townhouse (that’s’ another story.) I can then be guided towards this gentle, much needed, arthritis friendly yoga workout! Oh, now I’m just sounding girlishly silly…

I do badly need to start regular, gentle exercise… I used to work out before all this hit me, never been a sporty person at all but working out helped me and I feel icky without it. I need to get back to it. I’m on the physio list at the arthritis center; but the wait is at least four months and I’m at my peak of weakness/stiffness right now. I have got to start building stability and strength. It’s hard to do chores; I don’t like this at all.

I also need to start learning more specifically about what supplements to take, which help repair joints. Although this time; I’m leaving it to a naturopath whom I’m meeting with in February. I’m looking forward to this necessary setup too. I’m tired of playing doctor with myself, as I’ve tried to do (semi-successfully, but exhausting) when I don’t have the years of background. I need the energy for elsewhere.

It seems today that modern families are just too busybody, surviving their own lives to help each other all that much, in this modern culture of North America. It almost feels cold and unacceptable to ask. I mean they'll do some...when it's very emergent and one's desperate, you must call someone you know, if you can. This is if it's absolute and cannot be done by you. I don’t like to reach out, not at all.

Prevention isn’t good here. I only finally got help because I waved and screamed the flag of crisis...and even then I had to fight, and even then the kick-in is very slow. I think I’m missing something here, but I’ll figure it out in time I guess. That’s the way things work I guess. Expanding the concept of crisis-not-prevention to larger scale…it’s apparently more profitable for the system.

In this culture of today, there is no mother-in-law or great aunty Edna, or big sister Joyce, coming in and helping the challenged young mother. In my case, my own mother is physically stricken herself, and unwell upstairs of all things. Everyone else is very busy needing to do his or her thing. It’s necessary, and I would never bother them.

Again, my husband is himself challenged in some way...probably both mentally and physically. It is so hard because it concerns me, and I feel powerless over it much of the time. That’s because I am. He is often struggling to keep up alongside me...but if he weren’t here it might be a disaster. Or on the flipside, I might get more “help” from the socialist system for being a “single mother. Either that or I’d be deemed simply unable. I’m not sure...I haven’t tried. I don’t want to try: that’s a gamble that I’m not willing to participate in.

Aspie marriages are not easy breezy and we all know it, but I love him. Two people in their own struggle, trying to work together under immense pressure and struggling with theory of mind; it’s inevitable that there’d be challenge. Love sees it through. Even though he pisses me off many a time…I’m not sure if he can help it. I do the same to him. We just avoid each other when need be, other than where we are required to enact teamwork.

In saying that though, he needs to pull his weight even though attitude can get in his way. He seems to have to push himself too; again some of it may be attitude due to unhappiness, and I’ve assumed this on occasions.  I don’t know. These things all overlap. I’m also guilty of having an attitude.

We’re both aspies and to be honest neither of us is happy in survival mode. Our brains want to be doing something more extraordinary. Sometimes, we’re downright miserable, in fact. I have to counter that in saying there are good times, fun times, close times, loving times within our family.

We love our children so much, and stick by this duty, even though we are so challenged. No, nobody likes being in survival mode…but for aspies it seems ultra painful. We really want to do things we love and are good at. Our brains are haplessly fixated on wanting to “be there” all too often.

 The best solution ever would be to turn it into something that makes money. Problem is, that is a massive challenge to do when the path seems obstructed by barriers. The barriers of the rough modern socialist pyramid system, which has become; more than ever...unjust and juts plain confusing. To many people it is so, but aspies are amongst the most vulnerable ...particularly if they do not come from money.

I like blogging, and doing videos… but I’m pretty clueless as to how it could transition to selling and thus earn ,e money. I have been this more using it as a journal to simply share my aspects of my story and my viewpoints, so far anyway.

My poetry blog os a bit different. I have thought about publishing a poetry book but don’t have much info at this time, as to how to put this into action. I need to understand everything visually, in steps that are precise. Otherwise, I suffer an intense astigmatism. Maybe I can figure it out.

Sometimes it frustrates me to the point of avoidance. What I know more about than anything, though, is my music what I need to find my way back to. I have loved music since I was really young. I don’t have astigmatism when it comes to my music. I think I have a savant for creating pop music and the art that goes along with it. Rosie Teaflower (it’s an odd name and it’ll get explained later) could give Lady Gaga a run for her money, if I apply myself with all my drive and passion. I do this on “auto drive” when I’m in the “element.”

That’s what you do when you have an intense passion. However, I feel like my body, and the circumstance of things in the way, is pulling me down from this being within reach… and it hurts.

I need the space to make my music; I need a bit of time to learn how to use Garage Band. That’s it. I proved that I could understand it by fooling around with it on that dinky little Magix program. I really produced cool music and the result was liked. My autistic mind sees it all and it doesn’t take me long. I just need the time and space the start the engine.

My voice is pretty decent for my style and what I do. I’m a perfectionist with it but I’m told it’s better than I think it is, and that it’s distinct. I sing from the heart more than I ever did before. I can no longer afford to overthink it…besides, overthinking anything not meant to be overthought sabotages it. Aspies sometimes learn this the hard way… while grappling for a balance between obsessive compulsive and just plain giving up/avoidance.

I’m 27 for gods’ sakes. This has been my dream for…how long now? Way too long. I’m getting a bit nervous that my lifelong belief; that I’m supposed to make something of myself…is a nothing but a delusion. I don’t think so, but sometimes I doubt it in sheer terror. Will I dissolve into sand and run the hourglass, faster than my hands can catch.

I mean in finding out why Nelson is so underweight and why does he lack muscle mass in a way that seems abnormal, is important too. Why he looks like a teenager when he's 28? Although people have observed him to be lazy, I genuinely think he is lacking in energy compared to another 28-year-old man his age. It worries me a lot, I try not to think about it, because I feel helpless about it.

Nothing obvious shows up on tests, although we'll be visiting the Genetics clinic soon, our whole family. I think the answers may be here. However, it'll be months so I have to put it in the back of my mind now.

As for me they think it’s possible I have a genetic condition responsible for the FM and arthritis, one that results in a lack of collagen and over-flexibility resulting in joint injury, premature arthritis, chronic pain. I think it’s very suspicious but again; I won’t even say the name of it until I get an answer, because there’s no point. It may not be the case but I feel it a point. If it is, there’s not much I can do about it, though it’s important to know, and to know if either of my children have it, or whatever their dad has.

A lot of people on the autism spectrum are, and more likely to be, challenged by genetic issues. They are difficult to diagnose without evaluation that apparently costs too much money.

We finally got lucky, after all these years, when our sons’ pediatrician decided to refer us on. It’s like a “golden ticket.” However, we’ll see what it’s like when we get there.

In the mean time, (and this is the case with many of us still other than my husband and myself) we’re left to feel physically challenged by our disproportionate workload, and to drag our asses, and not know why or how to really improve it/live with it.

But; It’s not like we haven’t been this way already, for a very long time now. So I’m sure we can handle one more stretch of it, before it may be over. People like us often turn to supplements and naturopathy out of desperation, if we and when can afford it. It helps only a little, sometimes.

Holidays; err I mean "deadness" of activity albeit the two actual days of celebration (New Years and Christmas), in terrible weather, too cold to go out and’s Ouch with a capital. My hub did take them out, but my younger son wanted to come inside after 30 minutes. “Too cold" for him even with the right attire. I eventually mustered the energy to cook a hamburger meat stew. Meals are from scratch in this house, due to sensitivities and budget. Sometimes I get frustrated and don’t eat enough, and put my kids first. 

However; at least hearing the words "you’re a good cook-er mom!! I love this healthy stew. MMM!" is a little glimmer of light amongst the dark tunnel of now. It reassures me that I’m doing my best despite everything. I know I’ve said this so many times before, but I really hope, and feel, that this time the candles will light the way.

The candles: the move from this awful place to a better one, yoga, a new art space, AS support for my husband, some weekly housecleaning guidance, advocacy for better services for my child, and for me too. I hope that dreams, in one way or another, will finally come true for my family, and for me, in the New Year of 2013. I hope so. I've been, basically, waiting a lifetime…

- Rose Whitson-Guedes

*Like what you read/wish to support? Diary of A Girl Outside The Box and others (Kindle) are available to purchase via the "books" link on my site!

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