Tag Archives: physical awareness

Never-Ending Nightmare

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I cannot even explain how exhausted I am. Meltdown after meltdown – horrific ones – just don’t seem to ease, running into each other, causing complications that cause even more… It a nightmare that doesn’t seem to end. Pain, confusion, exhaustion, [on top of my usual] fatigue, disorientation, pure terror.

All apparently starting from a generic cold/fine virus I got… which  I completely missed, because the symptoms are just like a Fibro flareup: extreme temperature changes (often caused by my pain), aches, stiffness, fatigue. But the grogginess and disorientation that came with it should have been warning flags. The unfortunate thing was I was also in the middle of a rather big flareup at the time… It’s all been a nightmare.

I “black out” during meltdowns. I have no idea what’s going on, what I’m doing, what is happening around me or to me. I also don’t remember afterwards what happened either. There’s simply no memories being put down, so I haven’t a clue. This time, after I didn’t “come round” properly from it, I though it strange… then after a while I found bumps on my head, and when someone checked my head, found the top of my head not only had a few big bumps, but it was also bleeding from some cuts on it. Then I realised what was wrong with me… and old memory and familiarity: I had concussion. Groggy, slurred speech, confusion, disorientation, sleeping constantly (I never sleep; even at night I barely sleep)…

I’d been through this when I was 16 and had a horse riding accident, banging the back of my head quite badly and knocking myself out for a few seconds. I fell off backwards, hitting my head first and hurting my neck while I was at it. My back, hips and sacrum came down next, damaging my lumbar area. The cost of that accident has been lifelong… and the memory of concussion was one of those. It was a jarring realisation, but at least I knew what was causing it.

I’m lucky my mother’s a nurse. She checked me out, was happy(ish) with what she saw – pupils reacting and even, BP normal (for me, anyway), pulse fine, general consciousness OK apart from grogginess and some confusion, memory was OK (didn’t forget what was going on, meltdown notwithstanding). If she wasn’t concerned then I was not either – although to experience the side-effects is pretty scary. But I’m experienced enough after working as a Nursing Assistant/HCA for many years to know what’s right and to trust your nurse, and she is definitely one of the best (no I’m not biased, I’ve worked with many of them over the years and just know a good one…!).

 

Learn The First Time…

This same thing happened before, with the due to the very same problem. I missed it again, and I wasn’t looking after myself very well. I missed another trigger-point, the warning signs, everything.

Now there’s a new(ish) “rule”: Juiced drinks or smoothies every day, especially smoothies including vegetables and extra minerals if unable to eat properly (the pain depresses or muddles my appetite quite often). Back in London, I learned to use this rule and stuck rigidly to it, and my health was pretty good. I didn’t miss a day of anything from cold/flue viruses for the longest time, and even my asthma and temperament were better regulated. This is now being reinstated – I’d rather be healthy and broke than go through this again. Ready made pure juices smoothies like Innocent, Cold Pressed, Tropicana, etc., are difficult to afford but are clearly vital.

It’s hard to learn the triggers – I’m not exactly an “old” dog, but after spending over three decades trying to ignore and deal with certain “idiosyncrasies” of myself, it‘s so very hard to realise I have to be very aware of myself, and to understand that I can no longer be complacent or dismissive of them: they’re signs and “idiosyncrasies” of the Aspie in me, and they need to be looked at and checked for general trigger points. Illness has always (unknowingly, but quite clearly in hindsight) been a big trigger point for me. Add that to already learning to deal with another illness, a severe and debilitating condition, and it’s just going to be bonfires and gasoline. Taking the viruses out of the equation is an absolute necessity. One horrible illness at a time is enough for me, thank you very much.

 

Learning Curve

Learning all all these things comes at great cost. Emotional turmoil. Relationships. Exhaustion. Coherency. Injury. Concussion…

It sometimes just doesn’t seem fair that it’s possible to leave and ignore someone with such difficulties without assistance. I’ve been ignored or dismissed, or just lost in the system, my entire life – and it’s no different now. When I was a child no one had even heard of Asperger Syndrome. By the time I got the diagnosis I was too old for help – the buzzwords surround only the children these days, and adults are ignored. It’s even worse in North Wales… Everyone is ignored. Even the NAS (National Autistic Society) has virtually no resources invested here; everything is down the south coast, around Cardiff and the Brecon Beacons. They can’t even answer the phone.

Don’t even get me started about the local NHS and Betsi Cadwaladr health board… They haven’t even heard of their own backsides, and are medieval in their treatment of any psychological/neurological/mental health situation. But then, North East London Foundstion Trust was worse… so it seems a little petty to complain. At least coming to this area was a microscopic step up, though I miss my old GP immensely. He was a real gem when this all started and went to hell in a hand-basket.

This learning curve is painful. Physically and emotionally. It’s destructive. It’s mistake after mistake… A never-ending nightmare of never-ending meltdowns. Exhaustion, pain and confusion causing such extreme fear and terror they cause unimaginable meltdowns that are clearly very destructive. I am apparently can pose possible danger to myself and others, frightening me even more – so not helping there, becoming a trigger in and of itself. I am lost and I do not know what to do.

I have more coping strategies. I have more information. I have piles of beanie toys, which help me try and stay calm and comforted. But there are always new or unexpected triggers. Or everyone else is tired and not able to deal with me. They’re mean and get horrible with me, making it worse, escelating things, scaring me even more. I feel so alone, even more so when this happens. I have nowhere to turn and no one to really talk to, no one to help, no one to give guidance regarding understsnding my ASD and how to deal with it and Fibro.

The meltdowns were actually quite well controlled until I got ill [with cold/flue]. So I feel really bad it slipped past me – yet it may not have if I wasn’t already in a horrible fibro flareup already. But that probably helped cause it, destabilising my immune system and not allowing me to eat properly. I did not turn to juices/smoothies to increase my nutritional intake, and thus became ill. When I was reliant on them I had no issues – somehow the significance of this fact passed me by, not equating it to being able to help me now.

All I can do right now is hope that each costly mistake will have a return for the cost. That lessons will be learnt, better strategies or help will come from it. That there will be something to offset the hefty price. I’m currently paying for it with nightmare days, broken relationships, a broken family, multiple seriously-painful bumps on my head, multiple cuts on my head, concussion, emotional fragility, inability to cope, mild depression, suicidal thoughts, extreme pain, feeling confusion, feeling lost and alone.

And no, I still haven’t received any help. But then, I never have… so I hardly expect any now.

I keep asking, keep looking, keep hoping. But I’m starting to see it’s really nothing but a futile idealism now.

So I just have to keep paying the price… But my account is now severely getting into debt…

 

KeepGoing

 

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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.