Tag Archives: disabled

Anxiety & Chaos — The Antithesis of the Aspie Mind…

Anxiety and Chaos rules my mind. It feels like it’s been long buried under mountains of agonising pain, sorrow, grief. Fibro-Fog, medication, and more and more Chaos and Anxiety. I can feel my mind still there, calling, struggling to be freed, to be heard… yet, there seems to be so little I can do about digging it back out.

As long and all this overwhelming Anxiety and Chaos rules me, rules my life, is forced upon me – truly, it seems that no matter what I do to prepare against it, it floods and breaks through my defences and laying siege until I can do nothing more against it. – it will Rule me. It overwhelms me. Then, it eventually takes over me. My life. And now, it just simply continues to do so… because I have only so many spoons at all, and that number is barely above Zero, and none of those spoons are even remotely strong enough to fight against the sheer mountain of things that continue to suffocate me every minute of Every. Single. Day.

With no Short Term Memory to speak of, and pretty much no Long Term Memory to fall back on (although, thankfully, the odd one can be brought out with certain triggers, unfortunately few and far between), it’s like I am nothing and no one.

As an Aspie, who once remembered everything and anything just about, this fact is near killing me inside. I still don’t know what to do with it – the grief and frustration of going through this, being forced to live without something embedded into me, that was an intricate part of me… Quite often, it is all too overwhelming. Even the inability to control my environment was entirely reliant on this… and without it, Anxiety and Chaos reign entirely. It is painful and frightening, and there seems to be nothing I can do about it – and I feel this because I have gone through everything I can think of over these past Five Years this has been happening to me…

I physically cannot move – my condition leaves me with only the shoulders and arms and what is above it; pretty much nothing else is movable by my own conscious will. I must remain on the floor whilst upstairs because my chair (or any chair) cannot fit up here; the house is too old and the landing is far too narrow to accommodate one. This means that I remain next to useless up here – unable to move or control my own environment in my bedroom. Despite assistance, there is no way to keep it sane without someone perfectly able-bodied to take things out and put them away as required. Whilst I may be able to retrieve something, putting it back may cost too much spoons, or be too difficult – or worse, I might forget.

I have been numbed by the sheer and exhaustive amount of confusing and destructive emotions that keep washing over and drowning me. I do not like emotions – actually, I loathe them, and wish they did not exist. And, quite frankly, there are definitely far to many of them. It’s a cornucopia of horror that I flail at, until I fall victim to my terror and end up falling and drowning beneath them all. “NT” people have called this dead numbness “depression” – but I’ve studied psychology for years, and what I have has never quite been fully described by that theory, and it does not fully cover what it is that I experience.

I am TMI (Too Much [Sensory] Information) when it comes to all these emotions – and all are fuelled by my two arch enemies: Anxiety and Chaos. I literally cannot live like this – I barely even exist like this. To live, to participate in… well, something, anything… to do what I love again… That would be Everything.

So, by that measure, it seems that right now I would have nothing…?

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The Past Collides With The Present…

 

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Today, I found an old (former?) friend on Facebook (…where else?!). I haven’t seen her since she left for Australia with her family when we were 12 years old. I happened to be looking through old photos and wondered if she was on there. And she was. And I saw her as she was now… 25 years later.

Married. Three boys. High School Graduate. Still close to her family. Her sister shared the same (birth) name as I did, and she was also mentioned on there – married also. Looking almost exactly the same as she had done, just older. I recognised her picture… That smile was always so bright and infectious, it was instantly recognisable, if nothing else.

My instinct was to say Hi. Naturally. Since she would never be able to find me on Facebook (I deliberately ensured that no one from my previous life could find me first), I thought it would be nice to get in contact, because before she left we were the best of friends and fellow Beatlemaniacs. In the pictures we looked like we were having a great time. But after that initial thought… another feeling came over me.

My reaction to finding her wasn’t quite what I was expecting at all.  I ended up with that now-familiar shockwave I get when I realise that what “normal” people with their average lives take for granted, I never can. When I see what other people my own age are doing… in glaring comparison to mine. And I was left feeling… Sad. Inadequate. Pathetic. Lost. Forsaken. Broken. Pointless. A Nothing; A No-One.

She had a husband… I had Fibromyalgia. She had three boys… I had what felt like a hundred pills a day to take. She looked like she was doing well… I had a wheelchair and a catheter that refused to stay put. She was living a good life… I was barely alive and broken into too many pieces to even count. She lived in Australia… I lived with my elderly(ish) parents (and don’t tell them I said that!) who have to care for every damned need I have, despite my being the very wrong side of 30 (and I used to think saying “the wrong side of 20” was a tragedy…).

What on earth was I ever supposed to say to her?

All I could ever offer was the possible bad news (or unfortunate news, at least) that her former [best] friend was a wheelchair-reliant, mobility-impaired Fibromyalgia sufferer, who could no longer do anything, nor remember much of anything, and lived in constant and consistent agony. Was I only to simply talk about what I used to do – what I once was?  I had no conversation, nothing to offer, and what use could there possibly be from bothering her with a G’d Day from me?

And no, it’s not about falling for some “perfection” boloney that most people put on there (there is surprisingly little about her life on here, except some recent pictures of her boys, who look adorable anyhow), and then putting my life up against them. I don’t do that anyway. It’s about the fact that what other people have, and take for granted, was never mine to enjoy, or have. There is almost no one I know, if anyone, that is in the same situation as me. Immobile, in agony, with a life lost at age 32, now living with and being taken care of by my parents for almost everything,  as if I’m some kind of overgrown toddler (sort of, I’m not exactly that much taller than a child!).

Every small thing brings home what I’m not. How broken I am. What has been lost. What nothing has been left behind. I hate the self-pity… But after nearly five damned years of this, I still yet have no idea how to process all of this. Because there is no How or answer to Why… It’s something that exploded from nowhere and no one can ever explain it. Leaving me struggling to do the most basic of things, and dignity be damned! I haven’t had any of that for a while now…

This woman is a memory of what could have been, what may have been. When I knew her I was a young child with endless possibilities. Before the serious bullying (it turned out that it was she who was inadvertently keeping me safe from this, as it started up almost the moment she was gone…) that destroyed my childhood and teenage years, as well as the first half of my 20s. Before umpteen illnesses and allergies – not to mention the Fibro. Before I was killed inside and a zombified vampire of a soul returned to attempt to survive and cope with whatever little that was left of me.

She left just before the shit hit the fan… so the (rather spotty and sporadic) memories, the seemingly unending amount pictures of her or the two of us, the girl that I had been and that I was back then, all are shadows long lost to the older, destroyed woman I am now. Seeing me then, with her, innocent and ignorant of the hell that was to come for the next Quarter-Decade of life, was a shock. I don’t remember those times – I don’t remember most of my entire life – so I have no recollection of who I was before. But in those pictures I was introduced to her. This person I was. Alongside my friend. I was smiling. Having fun. Clearly being silly and enjoying it. Being Beatlemaniacs together. Being in the first year of high school together (before that school played its part in pulling me apart). It was a relationship full of fun, hope, and playfulness. Without a single clue as to what was going to come next…

And thusly, contacting her would achieve nothing but encouraging the Ghost of Life-Once-Was to haunt me again. They’re haunting me enough as it is. This woman isn’t really the same person who was my friend. She’s no longer CE but Mrs. H, a mother, whatever else she has become. The only thing that is still the same is that infectious smile, and her kind and sparkling eyes.

I do not remember the past, so it must be best to let sleeping dogs lie. I was long traumatised by everything that happened to me, and probably the best thing is that I have forgotten. Retrograde Amnesia happens in PTSD for a reason, after all – and I’ll kind-of thank Pregablin for deleting the rest. I may not have much Short or Long Term Memory, but although that is annoying and unfortunate at times, it’s a good thing most of the time, and it’s best not to go rooting around what’s there in my mind.

Therefore, Mrs. H, née CE, I think it still best you still don’t know where I am or how to contact me. I ensured my old name is not linked to my online footprint or profiles for good reason. My past should stay where it is. In the pictures. In memories. In the past.

 

 

 

 

 

 


Beginning Of the End (of the year…)

Already yet another Fibro/Fatigue flare-up… and just before Yulemas (as in Yule / Christmas). And just when I want to see Star Wars: The Last Jedi, too…

More fever, more pain, more exhaustion: I’ve been up all night for days, I’ve barely slept in nearly a week. Needless to say it is not going well. It’s a good thing I have my new mattress and catheter… I know exactly how much worse it would have been if I didn’t have those.

The worst feeling is that I still cannot reconcile how much absolute control this/these condition(s) have over me, how it dictates my personality, how the pain and exhaustion prevent me from even leaving my room or sometimes even my bed. During a flare-up I can do virtually nothing, and it seems that no matter what precautions I attempt, they’ll turn up whether I like it or not.

So you might not be surprised to know I would rather Yulemas disappear and I couldn’t care less about it this year. I can barely muster the energy to even want to see The Last Jedi  and I’ve been so excited about this for two years. My friend and I were supposed to go to  Christmas thing at Lyme Park too, and after a whole load of flare-ups, one after another, after another, that now is too off the table, amongst many other things. It better not take Star Wars away from me…

There’s so much I had plans to do, now it’s Yulemas, nearly the end of 2017, and I’ve  achieved precisely nothing from this year (unless you could finally finishing PC edition of Dragon Age II…). Instead of achievements, it’s been yet another year of loss. Even losing my best friend to a year or two travelling around South America (although, bless her, she still makes sure she’s there for me if I need her).

The weather has destroyed so much of my health (whatever flimsy amount of it there was), everything from severe storms and torrential rains, to terrifyingly low isobars and bloody snow. Plans have been destroyed. I lost the remainder of my mobility this year.

It’s been quite the Annus Horribilis.

And I doubt it’s going to get any better in its final week.

 

 


Combating The Cold…

After spending perhaps about two and a half months downstairs, I really want to go back up… but it doesn’t look like it’s going to be an option just yet.
It’s a Catch-22 situation – it’s so cold down here I need to go upstairs, back to my tent and my computer, but I can’t get upstairs because the cold is searing my entire everything and turning into solid spasms of rock-hard stiffness and making me ill… and then because it’s so cold I need to go upstairs, but I can’t…. and so on, and on, and on… So, obviously I’m stuck and getting nowhere fast.
However, there may finally be a solution to this… Today, I had a brainwave and thought that if I’m that cold, then I should get something made to keep me warm – a really puffy
and special sleeping bag created for literally freezing weather.
Ayacucha Sirius 300 Sleeping BagThe Ayacucho Sirius 300 is a really warm and cozy bag, capable of keeping you warm and toasty in temperatures down to -6ºC. So that should be warm and puffy enough for down in the living room! It also means I don’t have to have the fire on, or hurt myself trying to keep it going. This bag is immediately keeping inside my bones and joins warm and happy. It’s not just superficial warmth, and goes really deep like the fire does, and just sitting on it, on the open inside, is making a huge difference. On a basic camping mat, just keeping it up off the floor, it’s really great. And amazingly really warms my bones so they don’t hurt so much anymore.
It’s pretty great –  and it might make absolutely all the difference in the world tomorrow morning when I wake up. This morning I couldn’t even move on my own and I was in agony. I’ve been in hell all day, in a hell of a lot of pain, and even in a spasm – but when the bag was put around me during the spasm it really helped stop it from escalating, which it was doing quite badly until then.
I’m not comfortable right now, to be honest… I’m having a flareup with a hot flush (although I tested my core temp with a thermometer and it shows as being just 35.8ºC, which looks so strange, given how very feverish I feel!), I am having really strong palpitations (probably quite tachycardic), I’m quite discomforted in my own self, in quite a bit of pain, agitated, pretty bad sweating (I really hate that bit the most), and my face and teeth really hurt… basically, I’m not well, and probably because I overdid it today.
I went out for the sleeping bag and stuff, and then tonight I finally went for a shower (it’s impossibly hard to have showers with this much exhaustion and fatigue), with the idea (if the sleeping bag idea works) of dying my hair tomorrow. I’ve got 4-5 inches of badgering (that’s what I call the regrowth because with the white/grey and dark brown hair I have naturally now looks like a badger), and the hope is that the sleeping bag warmth will allow me to get up and do so. I’ve been waiting to do this for so long, it would be nice to finally get this done.
It’s been a hell of a couple of months… I do hope this is the start of something at least a teeny bit better.
Ayacucha Sirius 300 Sleeping Bag
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Falling…

I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.

I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.

When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill.  I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.

It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.

No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…

It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?

Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.

Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.

It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…

The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.

I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.

It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.

I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…

 


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