Tag Archives: pregabalin

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.

 

 

 

 

 

 


All Pain, No Gain?

It’s easy to believe – too easy sometimes – that the actual entire universe is against you no mattter what you do. In fact, the more good you try and do, the more it punches you back in the face. Perhaps this is especially true if you’re already struggling, and you just want that one day, or one time to go right. Except it doesn’t – and not only does it not go right, it actually goes spectacularly wrong.

I find it that every time I want to do something good for myself, I (effectively) get punched in the face for it. Every time I try something positive, good, enjoyable, I Nobody_Will_Hit_As_Hard_As_Lifeget knocked down. I end up writhing in pain, on the floor in unbarable agony – or I am somehow flung into an unimaginable nightmare of a meltdown that never seems to end. I genuinely left to wonder why… Did I do somthing wrong, against the Universe? Did I break some cardinal rule of the Fates in having a good time? Just why am I on the floor, literally screaming in agony, after doing something good? It’s a question I am constantly battling with.

The fact I cannot seem to do anything without dire concequences rests heavily upon my shoulders. I know I must weigh up every single thing I do against the pain I will have to endure in concequence. From getting up to fetch something on the other side of the room, to going out for the day to do something nice like shopping or to the cinema, must be carefully considered because of the enormous quid pro quo: “You get to go out; I get my agony”. It’s either hours of agonising pain or a meltdown. It’s usually both. Triggered by each other, plus absolute exhaustion. There seems to be no way around it… No matter what I do.

Yes, it’s part of having a chronic illness; a condition that will literally never let you sleep (or lie down, sit, stand, or breathe) easily. It’s just an is. But it’s so very hard to see it as just that. Too easy to see it as the universe being dead against you being even remotely related to happy. It’s easier said than done to see it in a different way.

Because I cannot use normal painkillers to help me deal with the Fibromyalgia, I rely on Pregabalin and stubborn will power to overcome the pain – ignoring it as much as possible is the closest thing to a constant analgesic that I have… and ergo that defense is easy to breach. When the pain does come, it cripples me inside and out, thus I always weigh, analyse and constantly re-decide what I should do… So, I rarely go out. I rarely leave my room. I rarely do anything at all. Much to my detriment.

I have Asperger’s, so I’m not all that enamoured by frolicking amongst people. However, doing certain things are just quite vital to me being me, and this constant fear I now have about “being punished” (we’re calling it that for now) for it makes me just not want to do anything, even the stuff that I love. Take today for instance: I went out to the cinema to watch a movie that I had a really great time watching. I drove to the nearest IMAX, about an hour away and enjoyed late lunch/early dinner before the viewing. It was a two-hour movie, and I did not drive back because I can’t drive in the half-light of dusk. By the time I got back, I could barely haul myself out of my chair to get into the house with my ti-wheel frame… then I collapsed on the stairs I was planning on crawling up back to my room.

The pain wasn’t even in sight of the ten-scale. It was way, way off, enough to make me scream (and I’m fairly used to this crap by now). It was bad enough to require two shots of cognac and a glass of wine to make it subside enough so I could actually breathe. It took a long time of lying still to come round from it, and gather up the courage to get up again. It took the stubborness of ten bulldogs to get myself crawling up the stairs and into my room. I’ve had another extra glass of wine, and it still hurts – but it’s down to about an 8 now, which I find almost tollerable these days.

All this for the sake of going to see a film I wasted 2 hours of petrol and about £20 on seeing (if you include the popcorn & Sprite). Was it really worth it?

I honestly don’t know how to handle this about myself, about this condition. Both my conditions really – a flareup of one will always set of the other in some way. I don’t want to stop doing things… like moving, breathing, going out to see good movies… but I do not want such horrific concequences every time I do so. How can I possibly tell myself that going out to see a movie is a good idea, when I have to go through that after? What is the point of going for “a nice day out” or “a good walk” (OK, “wheel“) if that is what I’m going to be facing after? It’s no longer really “a nice day out” anymore… Certainly not for me anyway.

I’m not quite sure if it’s stupidity or stubborness that makes me go out there when I do, knowing what is going to happen afterwards… and always rather rediculously hoping that this will be the day I do not get it. The movie today was good… good enough I’d probably say it actually was worth it. But those are very few and far between. I would like to go and visit places, but the thought of having to endure what comes after makes me cowardly shy away from even trying.

Am I being punished for trying to do something other than be ill? No one can explain to me why I even have this condition in the first place, let alone why I would be “punished”. There’s never a break from it if I do go and do something… the only resemblance to maybe 20% of what might almost constitute a break is when I’m sitting down on my beanbag doing nothing. Not a single thing. Bored out of my brain.

There are times I do the self-pity thing of “why me, what have I done to deserve this…“, but to be honest, there would be no answer that would even be good enough anyway. For each and every thing, every choice, every movement, each decision must be weighed on its own merits, and the decision has to be lived with… and I can’t really win either way anyway, since I’ll get almost as much pain from sitting still and doing nothing, leaving my legs to cramp and stiffen. Few things are genuinely worth the effort, making my already rather short outing list even shorter.

I do wish there was a way I could look at it that was philosphiocal… something other than it just is. Acceptance without explanation isn’t really in my vocabulary. I wish I could think of the fact that “at least” I did such and such. But I don’t. If I’m going to feel that much, then it needs one.If I’m going to face something I’m that scared of (and I’m scared of that much pain), then I need a good enough validation for it.

 

But instead of answers, I’m just left with questions and the great unknown… “Why…?

Not A Challenge


The Pain Game

I am unable to focus. Unable to think. Unable to feel… except the pain. There is nothing but the pain. It’s been  around 914 days since it started. About two and a half years. All that time where nothing else has mattered. I used to be “me”… but now there’s nothing but the pain.

My average day ranges from a “good” 7 to a horrible 10+. If it’s really good, it might go down to a 6.5 – if I’m really lucky. Basics are hard, or impossible. Even typing is a strain on my pain barrier… making things like learning code or playing with a Linux system difficult or impossible even if I could think straight. I have to live in a world where I’m classed as… OK, I can’t say the “D” word. It’s where you’re incapable and industrialised – where you need things to help you, but they look like an institutionalised little old lady threw up on them.

I used to do yoga. I used to sing. I used to dance. I used to read books like my life depended on it – all kinds of them. I used to watch movies. I used to work. I used to do a lot of things. Now I do almost bugger all. There is so little that I can do. The pain, lack of focus and current memory problems (thanks to the meds) are pretty crippling, both physically and mentally. I wouldn’t mind so much the lack of movement if my brain could work… but it doesn’t. On good days I take advantage, but there aren’t many of those.

The worst is not being able to play games nowhere near as often as I would prefer. Games help clear my head, help me think, help me analyse, help me relax, help take me away into another world. Having that taken away from me is quite the last straw. To add insult to injury I also can barely hold up my iPad anymore (the iPad [4] Retina weighs nearly double the newer iPad Pro/ Air 2) – meaning reading and writing on it are getting impossible, and I do not like using a stand (don’t ask, it’s a long explanation…).

To be frank (and to use colloquialisms) it’s “messing with my head”.

Stars_Can't_ShineI am particularly convinced there are many ways to deal with and combat this – but the fact I am unable to work out precisely what any of them might be is leading to making me feel constant depression and heightening anxiety. I want to do all the things that I can realistically do – a little basic yoga, coding, gaming… but I do not know how to control the pain or my response to it. And my response to it is not especially good.

It does not help that this causes more physical complications… otherwise generally known as “psychosomatic” symptoms – where anxiety and fight-or-flight hormones become effectively toxic and cause “stress-related illness”. I have enough going on without having them too. The pain is like a cruel and sadistic captor, keeping me hostage with its games and strange punishments… and sometimes I wonder if I’m beginning to experience Stockholm Syndrome – just doing as it says all the time, not thinking for myself or making my own decisions. Actually, no – I’m pretty certain I have it.

Stars may shine with darkness, but I do not. I am a prisoner of the pain and I am not strong enough for this. I have already been through one gauntlet and I thought I had come out the other end. Am I still in it, or is this a new one? Either way, I feel twice my age, exhausted and tired of life. I am tired of the pain. I am tired of being tired, and  of being entirely emotionally drained.  I cannot be that person who shines in adversary – not now. It was hard enough the first time, now I’m just too old and tired to manage it again.

I am lost.Lost...

 

 


Going Solo

Pain is exhausting… and troubling. It’s now my worst enemy, and today I am facing it alone.

I have an appointment with a physiotherapist to discuss Hydrotherapy today. In two hours. My cab is now booked, my appointment is for 1pm. My friend was supposed to be here with me to help – I am not anywhere near ready to go out somewhere alone. Yet today I must somehow do so. She has an interview today, a last-minute request for a job she wanted – in Wales. So she left yesterday to be ready for it this morning.

I have been alone so far for 24 hours – but that’s not really the problem. The problem is that having to do things myself hurts. Too much. Far too much. So I go without, I avoid, and I do not do anything that will make the pain worse. But today… today I have to do the exact opposite.

I must somehow manage to endure the pain and go to this appointment alone.

 

Solo Expedition

All Stressed OutI am daunted. Overwhelmed. Scared. I’m sitting here, with the Dragon Age Inquisition [PS4 game] launch window that plays the gorgeous symphonic theme music on a loop, over and over again. It’s comforting, soothing, a noise I know well and gives me strength and calm (operate conditioning: it’s how I feel when I’m playing the game, hence it makes me feel the same when I just here the music). I feel rather… trapped. Like a rabbit in a corner that knows it’s going to be done in, and is just waiting for that moment to come, trembling in that corner and just… waiting.

I have never been out on my own before – not since this happened. I don’t like going out anyway. Add this to the mix and I’m borderline terrified.

Somehow, I must prepare my own wheelchair, then get it out of the house (aka tiny flat that the wheelchair doesn’t really fit in) on my own, and over a rather tall hump where the front door frame is quite raised from the floor (I’ve tried getting it over it before, and it’s excruciating and such a difficult to do). Then I have to get it and myself out to the cab. Get in the cab and get to the hospital. Somehow then take myself in my chair all the way up to the physio department. Have my consultation. Then do it all again – backwards.

 

I can only prepare so much, but I’m doing so. I’ve taken Pregabalin, Devil’s Claw, and my joint pills. Just before the can is due I’ll take the 8mg co-codramol (I can’t take anything stronger). And that’s it. There is nothing more I can take. The rest is mental and emotional willpower alone. And my innate stubbornness.

I must try and remember this is no gauntlet compared to what else I have faced in my life and this awful pain I will endure will still be nothing in comparison… Although, that is difficult to remember whilst going through it all. But what is one more crucible when you’ve already had several?

 

It doesn’t help that I was already in a lot of pain this morning – today, the shoes my friend wanted for her interview came… after she left for it yesterday. They came at 8:30am – whilst I was still asleep. I realised it would be the shoes, so I gritted my teeth and dragged myself up on my own (I usually am helped to prevent so much pain), with my stick, and put on my dressing gown and went to answer the door. By the time I then got back to bed, I was in too much pain to sleep anymore or rest, but I couldn’t get up until I had psyched myself up enough to endure the pain it would take to do so.

I couldn’t make coffee and I had to wait until the Pregabalin kicked in… so I didn’t have any until way after 10:30am. It’s already been a nightmare day before it even starts.

Now I have my appointment to look forward to.

 

Uneasy Wait…

Soul on beanbag

Soul

Even Soul (the dog) can feel something is very wrong. He’s lying next to me whining and then trying to play with me, chew me (he’s a Staffie), rolling on his back with his little tail wagging madly, and licking my face, trying to cheer me up. Poor guy doesn’t understand why, but he certainly knows things are just not right.

My head aches, my mind burns, my bones ache. One coffee just isn’t enough… but choices must be made, and I must choose to not inflict more pain than necessary, if it is going to cost me more than I am willing to handle. If I am early enough, perhaps I can get something from the shop/cafeteria or whatever they have there (although, it’s not the best hospital for any services, least of all food – in fact it’s one of the most under-funded hospitals I’ve ever seen, and I’ve been to/worked in many).

It is now just half an hour before the cab comes. I must get everything ready that I can… And I really hope I am physically capable of doing this, even if it does inflict pain. As long as I am physically capable of this, I will manage… unfortunately, the reason I am going is that I am not physically capable of much and require hydrotherapy to support and strengthen me again (with less pain, thanks to the warm water). The idea is you go to hydrotherapy first and then do stuff like this, when you’re stronger. Not the other way around.

I said before Asperger’s and pain do not mix well together. Well, now they’re downright exploding like domino-effect multi-detonations. I’m about two minutes away from a panic attack and subsequent meltdown (hence writing this to calm me and make some sense out of it, and the repetitive gorgeous music from my joint-favourite game). I’m alone with no one to help me… well, no one human. And if I didn’t have Soul here to comfort me I would be in pieces without a doubt.

Now I must go and prepare… and pray that I can somehow make it on my own.

 

Focus On Your Strength

Focus On Strength

 


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