Tag Archives: sensory diet

Freedom To Sense Senses

These have recently become my new best friends…

 

41XjdqaAdgL._AC_UL480_SR480,480_      *      *     *      Leg Weights_Pineapple

The reason: The ability to now have better peripheral orientation and physical awareness. Part of me hopes they might also help tone my arms and legs… but I couldn’t care less if they don’t. With these, I know where my arms and legs are, and I know how to use them again.

 

First of all – it’s complicated. I am complicated. In having both Fibromyalgia and Asperger Syndrome (ASD), there have been many complications, and this has been one of the major ways they have conflicted against each other.

First of all, I’ll start from the beginning: From a child I was not the most active but enjoyed things that required muscle co-ordination and strengthening – country walking (hills, streams, caves, etc.), clambering (no heights), `then onto horse riding, yoga, singing, dance and city walking as I got older. All of these have one thing in common – strengthening muscle control and balance. Quite instinctively, I was clearly drawn to things that combated my (what is now very clear) problem with orientation and physical awareness.

Unfortunately, the Fibromyalgia hit. The pain endured meant I very quickly did less and less as the pain level rose inside me. Eventually, all that work I had done was lost. All muscle tone, strength, control was gone – and my “problem” was uncovered… but without actually knowing I had ASD and sensory issues, or that I required “sensory diet” assistance, I was lost, scared and frustrated. Even after diagnosis, it took a further two years to discover sensory issues and about the Sensory Diet.

When I found out about it, I did more research and thought about all the things that has assisted me in the past, when I was most “stable”. First I remembered my love of corsetry and giant Goth boots – in those I had felt the most confident and happy in myself, so much so I used to wear them almost all the time – so I got them again, to help me now:

 

black_brocade_steampunk_corset_1_16_1-thumb_1  Demonia Skull Boots

    

 

However, I realised I needed far more than that, because you can’t wear them all the time – corsets really shouldn’t be worn for extensive periods, and boots usually get taken off when indoors, or at least when you want to sit on your bed/beanbag and write/use PC, etc. I thought long and hard and came up with nothing… until one fluke recommendation email from Amazon turned up in my inbox: It had hand and leg weights in it. It was then I realised this was my answer – perhaps recreating the weight of the boots would help.

 

Difference:

When I put them on, the difference was so astounding I couldn’t even describe it. It genuinely felt like I had been “plugged into” myself again. I was aware of what my hands and legs were really doing for the first time since I became ill, able to control fine motor skills “automatically”, instinctively, and able to move in a more natural way. Able to type almost as well as before, able to walk without falling over my own feet. I stopped being clumsy and dropping things. Just like I had been able to walk and move better with my big boots on, these worked in exactly the same way. It was quite incredible.

There was another “side-effect” from this – my focus, calm, control,  outlook, all became clearer, and far more under my control. I was even able to control my response to the pain better, hence able to endure more, to block out more, thus being able to do things a little easier, and a little more than I could before.

Ever since I found this “Sensory Diet” I did not have a major meltdown for over a month. They were more controlled. Shorter. Less devastating. Slightly less exhausting. I had mini-meltdowns, but they were controlled fairly well, did not escalate. With the weights, the situation is even more controlled, and even mini-meltdowns have been shorter and require a few quiet minutes of deep breathing to assist the “buzzing” or “chaos” in my head dissipate. I had one big meltdown, but the circumstances were quite exceptional.

With the weights, I have been able to cope with situations, with pain, with things that usually caused huge meltdowns that I could not have managed before. I have been able to manage more, play my games, watch TV or movies I otherwise wouldn’t have been able to watch, able to read and write more, finding new books, or having better or different ideas … having any ideas at all, in fact.

I went to Caernarfon, walking with my 4-wheel X-Folding Walker, in a corset, my big boots (as above), my weights, and Doggy (Soul). I managed (with many, many rest stops) to walk around, deal with the pain, and even walked across what I deemed to be a very scary bridge without even thinking about it – until my father pointed out to me that usually I would never have crossed it. I wasn’t even aware that I really had. I just wanted to see what was on the other side of the river, so I went. I never even thought about the bridge, and gave it no consideration whatsoever. It was a huge breakthrough.

Yesterday, I went to see a new (used) car that my father is getting to replace his 30 year old campervan. He had found a beautiful Suzuki 4×4 that was built like a small tank and had plenty of room for all my gear and the dog, as well as the rest of us. It also meant that, given we lived in the middle of Snowdonia, we would have a more reliable car in all weather that we can get up here (floods, ice, snow, torrential rain, etc.), and we would be not only safer, but able to drive into places we might not otherwise be able to get to up here in the mountains. It was a beautiful car, and an automatic. In other words, it had potential for me to drive it.

I sat in the driver seat. The transfer from my chair into the car was ridiculously easy (compared to my experience trying to get into other cars), particularly helped by the footrail under the doors, and handles over the doors. Then there were the seats in that car – they could all have been especially made for me, from my own specifications. They were pure “Goldilocks” seats: Quite perfect. The right height, just hard enough, just supportive enough, just comfortable enough, the contours just in the way I needed them to support my back and legs. I had my arm weights and big boots on – and when I sat in the driving seat I felt like I could have just put that car in gear and driven off, without a hitch or problem. I knew and remembered exactly what to do – something I never thought would actually happen to me again (though others were rather more optimistic for me – turns out they were right… damn it!).

This meant that now I really, truly might have the opportunity to “learn” to drive again – as in slowly get used to being in control of a car… and an automatic one at that (I’ve always driven manuals). I have forgotten nothing about how to actually drive one. Driving was a dream of mine when little, and the day I passed my test was one of the best days of my life that I will never forget. It’s always been therapeutic – you have to focus on the road, so helps keep my mind in a calmer state… everything fades to nothing when there’s a road ahead of me, and perspective returns. Not being able to drive has been as torturous as not being able to sing – they make a huge difference my emotional and psychological health. The ability to drive again would make an enormous difference to me, my life, and my independence… which is what I have needed since I became ill with this thing.

All I want is to be is in control of my conditions, work with them, and have all of us work together as one, not against each other, leaving me in a ball on the floor, crying and in agony. The weights go an enormous way towards achieving this goal – they have allowed me to gain control of myself, and my physical awareness. There is a possibility now they will be able to assist me to focus enough to read, learn, code, write, play my games, and even drive again.

I should ask for it to go, but I don’t. What I ask for – what I’m looking for – is to simply be able to live a fairly enjoyable existence with these conditions. I’m quite happy to compromise with them and play ball, as long as I’ve been given the tools to do so. Now I’m getting closer to this. If I am able to drive, even a little, and with company, then I have one more extra tool to cope with my situation and one more thing to enjoy.

 

On The Other Hand…

There is a flip-side to all of this – one that most people would probably not understand:

Change is bad. I have ASD – it doesn’t matter whether or not that change is good or not, change is bad. With time I get used to the positive or negative inclination of the change, but the actual change itself is bad. Traumatic. Frightening.

The initial change, when Fibromyalgia hit, it was traumatic. When I lost everything, it was traumatic. When I had to leave London to live in the Snowdonia Valley, it was traumatic. But now that things are stabilising… I’m also finding it disconcerting, if not quite traumatic (…yet?). And like I said, it does not matter whether good or bad, these things are difficult to cope with.

So far, the changes have been slow to come – in drips. Luckily. They’re more unnerving than a shocking trauma because of the slow and steady exposure to them. Since I’ve been dumped here, recovery – or, at least, acceptance and acclimatising – has been slow and excruciatingly difficult. Stabilisation has been slow in coming. Learning curves have been steep, difficult and painful. In some ways, the things that have come back have been so natural, it has been comforting to have them returned, rather than seeing them as a change. Those are the good ones that makes life easier and more positive – I can do things naturally and normally without having to think about it (having to think about it actually physically hurts my head). This frees up space in my mind for other things that it should do, like learning, reading, playing, relaxing. Even space to cope with pain and “buzzing” that causes meltdowns.

The hope for the future grows… and with it comes the possibility that such a thing may be a destabilising factor. I’m trying to keep this in mind and ensure that changes in anything comes as paced as possbile, so I can deal with them. If too many happen at once, they can cause quite a reaction from being too overwhelmed by them all. Now I have weights and the car come almost at once… now things require pacing otherwise they’ll become too much and be detrimiental, regardless of how positive everyone else might think things are. An overload is easy to create, and I want to do everything I can to try and avoid such a situation – I do not wish to take too many steps backwards after working so hard to ensure my conditions are stabilising into a workable model.

 

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To Think Is To Be…

I find I have a lot to learn about my conditions. Most of all, it seems there is a lot to be learned about how to live with having Asperger Syndrome in a world and society made up of mostly normal people… or “neurotypicals“.

I have already found that this thing called a “Sensory Diet“, and whilst sounding incredibly odd, it is based on sound facts and works wonders in understanding things, the world, yourself, stresses, etc., so much better. It turns out that in my life before this, I used to do quite a lot of this intuitively. But after…? Well… It is after we have a problem with.

I recently read this blog regarding autism and fatigue. The story of the writer, her experiences, her thoughts – all of it – almost entirely mirrors my own experiences at the same age… apart from one thing. I had no idea I was an “Aspie“. In the 30 years I existed before all this happened – before “all hell broke loose” (as I feel it did) –  I didn’t know what was “wrong” with me. But I did find out things that helped. As it turns out, in posh clinical terms, it was called a “Sensory Diet”. Who knew…? I certainly didn’t – and even then, I only just found out about this thing now, and it’s been nearly 2 years since I was diagnosed.

I’d say someone should have mentioned it… but I saw absolutely no one about this, ever – so it’s not like there was anyone there to point these things out. I’ve had to find all these things out on my own, so it’s rather a slow process.

Anyway… the point of this that before  I was quite intuitively working things out that were helping me cope with living on a planet that was entirely alien to me. Now Afterwards none of these actually exist – and for one simple reason. I – very effectively and almost literally – have no memory. Or more accurately, access to my memory. Henceforth, I do not remember whatsoever what I used to do or how I used to do it, unless something somehow prompts these faded and shadowed flashbacks of my old existence. The pills I take seem to have seen to most of it, the rest comes from shutdown due to excessive anxiety and fight-or-flight responses.

So whatever it was I used to do, I not only do I have no idea of them, but I am so terrified of this other new planet I have somehow landed on – one that is once again a complete stranger to me – I cannot make up new ones.

Before, I spent years and years reading, watching, learning, absorbing how the “normal” (sorry – “neurotypical”) world worked. I figured out patterns, behaviours, distinct ways of “getting on”, for “passing”, basically for copying and mimicking them. Understanding them. Well, as much as I could, anyway. I never truly will, but I get a lot on an academic, intellectual level. Or, at least, I used to. Not so much anymore.

But now it seems all that information is lost – perhaps not forever; perhaps it’s behind new Admin access or Firewalls – and whatever the reason, it’s not available.

 

Changes…

My life is segmented forever into Before and After, now. No matter what happens, nothing will be the same as it was again… and this experience will scar me, affect me, haunt me, and drive me forever more.

Before – even before I knew what I was, what planet I was from (“Planet A“… * cheeky grin *), I used to manage to do things that helped me just get on. Cope with the weird. And life, people, circumstances and their behaviour was very weird. After, there is nothing left in that little memory cupboard for me to recapture it.

So, circling, returning to the point… The blog under discussion is about Asperger’s and fatigue. It’s not something we think of – it probably comes naturally to us to just process the crap out of things without even cognitively assessing just what it does to us as well as for us.

It doesn’t just help us, it exhausts us. This is because we most certainly – and quite effectively – work the world out with just our minds, because on this planet we really have no instincts. We ergo learn different coping mechanisms in dealing with it all, in trying to understand and blend in. I find this existence an exhaustive roller-coaster hamster wheel of balancing acts. Our brains go hell-for-leather and nineteen-to-the-dozen, always at excruciatingly high processing speeds and levels, trying to cope with the world around us whilst living in it. It is why we tend to do exceptionally well at thing that involve precision and detail – we see things in a moment that people sometimes don’t see at all, and immediately catch onto the things that are out of place. Our processing power, as well as our own natural instincts (which seem to be coronary to this world), enable us to do this without much bother.

In fact, writing this quite reminds me of probably being likened to a high-functioning super-quantum real AI trying to get on in the world (and it is in this fashion that enables me to identify with the character of EDI in BioWare’s immensely successful and award-winning Mass Effect games, more than any other character in most games I have played – with her I actually do understand what empathy really could be…). Your entire existence is in your brain, your processor and memory cores. Everyone else’s is based on instinct (but then this is their native planet, so what else is there to expect…).

To then have all this computing power, this memory core, this enormous mass storage of space filled with copious amounts of data, all wiped clean – or at least transferred out to a storage partition you have been locked out of… Starting again is not easy. Without the things I already knew before, I have to work all the harder to understand this world again. From scratch.

This is something I’ve not had to do since I was an infant. Thus is it any wonder my ability to cope has regressed to that of a toddler?

This time, at least, I am hoping to learn the right things, and this time I will also know why. I will at least benefit from the wisdom of this day and age, 30 years and more after the last time I was here.

 

Too Tired To Even Be Tired…

Currently, the word “fatigue” doesn’t even begin to describe what I am feeling as a consequence of this. And it’s all the more complicated because I am no longer a toddler now, and I am supposed to be some kind of adult. The fatigue that is mentioned in this blog hit home – in particular all the more now because I have to make much more calculations now to try and work something out from scratch, as I no longer have the data and programming available to work from. Within my pain-fried brain, this is usually far, far too much to ask of it, and ergo I have ended up crashing constantly.

I am overly hyper-sensitive to everything, which also causes absolute exhaustion, as does interaction with others (even the closest people to me, let alone others – and don’t ask me to talk to strangers… Just… don’t.). The pain has maxed out my sensory overload quota, so there’s really none left for anything else. Add the hyper-anxiety from it, which is also fed by the exhaustion itself too, it all gets far too much too quickly. Oh, and did I mention I can’t sleep, and am generally too scared to anyway…?

So, you see, I’m just a walking conundrum in a mess, where it all makes sense to me but no one else. My planet is very different from your planet, and here I’m not only weird, but dysfunctional. And being “naturally” dysfunctional (by your standards, not mine – to me it all makes perfect sense) is exhausting, because I have to override everything that is natural to me to get along with you. And dear lord, it is very, very exhausting.

I honestly do not know how to deal with all this. Some of that “Sensory Diet” thing is helping somewhat – it’s helping to give me a sense of myself, of grounding me, of giving me a physical form I am aware of (and not just a disjointed ball of pain), which then gives me parameters to work from. Otherwise I am frankly entirely lost. And the pain magnifies everything and makes things worse. I was starting to get on quite all right before that came along.

What I do know is that I am most of the time simply too exhausted to think or to even care. And when we you see the world through thinking alone… Well, then the world no longer has any sense or meaning, and it becomes truly terrifying. I have to do what feels like a thousand times more processing than before (and I’m older now, which doesn’t help), and it really is just all too, too much. And yet, I still have to try… Only I’m just frankly so sick and tired of having to. Can’t someone come into my world and speak my language and work with my instincts for a change?

The fact is that right now it’s too hard to do what I used to do before – calculate the crap out of everything and squirrel it all away for my own version of data mining, data collating, and data analysis. My brain just does not – cannot – work the same now. The meds I take makes it almost impossible to remember things, to put down new memories, new behaviours to go by. It’s like it’s not only disabled auto-saving but also locked me out of changing the settings to it. I am entirely reliant on others to help me with this, and that is a very frustrating thing: I may have been told that this or that should be done under certain circumstances, but I won’t remember – so others must prompt me or explain again what is expected.

I am a child again. I wonder if this time, “growing up” in this day and age, that things will change. I think in many ways it has; I think in many ways I am allowed to see what it would have been like if I truly was a child now, or if this information had been available 30-odd years ago… and it is somewhat heartening. It’s disheartening in the fact that it wasn’t available, and I am in this situation now, after three decades of struggling.

Is it like a second chance? Who knows… I suppose only time will tell to see if all this was anywhere near worth it…

 

 

Strongest_People_Win

 

 

 

http://healthinfopedia.com/asperger-syndrome-and-fatigue/

 


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