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…?

Advertisements

The Past Collides With The Present…

 

20160216_234550000_iOS

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

 


The Pain Masquerade

I forgot to take my pills on time tonight… again. But this time they were really late. The agony was excruciating, and frankly made what I usually go through on a daily basis look like child’s play.

It was a waiting game to get any relief from taking the Pregabalin (4 hours late), and attempts to divert attention with watching something (which works when extra pain rears its head whilst on Pregabalin) cam to nothing as the pain simply continued to escalate.

The worst are always the electric-shock type ones that turn up out of nowhere and sear so sharply through my bones and/or joints that I either scream or can’t even make a noise at all it’s so bad.

I couldn’t breathe. That was the worst part. Not only does the pain not allow me to catch my breath, but it doesn’t allow ke to breathe  the pain within my lungs and ribs are astronomical, leaving me struggling to expand my lungs at all without extreme pain. Add the rest of the excitation to it, and it was a nightmare mix  I couldn’t even cry properly… The pain was enough to bring a stream of tears, but I couldn’t cry. It’s always just too painful. It was hitting a high-9, or maybe a low-10… And soon, it would be way beyond that.

Victim or VictorThe only relief there was to be had was being given 2 (big) shots – gulps – of cognac that was in the cupboard. After a few minutes to get it into my system, it dulled the pain enough to breathe. It took some of the worst of it off, although it really didn’t take quite enough of it off to get me back to my normal level of pain (about 6/7 on the 10-scale on an avarage day… Without Pregabalin it’s about a 15… and maybe then some).

It took about 2 hours for the Pregabalin to sink in. Even afree about 3 hours+, the pain hasn’t gone down below a low-8 since – thanks to way over-extending myself in a foolhardy attempt to do housework chores. The incident has once again driven home just how important Pregabalin is, since without it my life absolutely wouldn’t be worth living anymore – nothing is worth enduring that much pain.

It’s also made me quite acutely aware of just how much it hides. Clearly the Pregablin conceals the pain. It does not treat, and it’s not even a painkiller. It’s a neuropathic medicine, used to – effectively – treat, or trick, the brain directly. But not cure. Whatever is causing the pain is still there… Even the pain itself it still there… It’s just that the pills stop my brain registering it so acutely.

Even with the Pregabalin, excess dynamic behaviour can hit me at a 10+ … I’ve tried to walk to much (when I could), or (now) I’ve pottered about the house too much, or even sat in my chair for too long. Or it’s simply just cold. These times, a “10” is a blessing as the pain shoots right of the scale and rockets into the stratosphere.

Each time these incidents happen, your “10” seems to become that much higher… After all. When these things happen, the “worst pain you’ve ever had” – the very definition of a “10” – becomes higher than it was before. The next “10” had to be even more than that. After a while, and after your pain scale carries one getting higher, your threshold gets higher, and sometimes you wonder how bad it really is, given your pain endurance has become enough to make you immune to some pain, and maybe you’re hurting yourself more than you realise with some things, because you’re used to having so much more pain than avarage.

Look for StarsBut then when you live with long term chronic pain, or Fibromyalgia, it seems that everything just causes such an extreme amount of pain it’s unreal. However, it also still seems that the same thing happens – your pain tolorence appears to be rising when it comes to your interpretation of the pain scale.

No matter what is causing the chronic pain, you know the pills are just masking the problem… and that no one knows how to really stop it. Cure it. Unlike with pain killers, I can still feel the pain somewhat with the Pregabalin. It’s just… dulled. A lot. Like after having lots of alcohol – your brain kinda registers it, but it’s kind of far away at the same time. Sometimes it seeps through more the others. Sometimes it can’t mask it very well at all… Like the pain in my joints. It’s rubbish at helping me deal with them, so I need Devil’s Claw (as well as a vitamins/cod liver oil combo) to help to that. It does make my quality of life better though, and incidents like this continue to remind me of that.

Right now, even with the Pregabalin, I’m in pain. The alcohol finally wore off… and I’m hitting a good 7-8-ish on the pain scale. I still expect it though, because of the effort I put into trying to make the house look like a house, instead of something resembling the aftermath of Katrina. On the other hand, I’m not sure how much the incident before had an effect on me in relation to this.

I guess all I really know is that it’s 2:15am and I hurt a lot. And I’m strangely hungry. Maybe the munchies from the cogniac. Alcohol has always made me hungry..

I get the feeling the worst of it’s over now, at least. I hope I do not make the same mistake again… It’s always a nightmarish wakeup call to be reminded in such a vicious way just how much these little capsules you have to take change your life, because without them you really would just give up on life and simply die from unbearable agony.

At this point I don’t care whether they just mask the pain… Just as long as they actually do.


Broken NHS; Broken Me

From one nightmare to another: In the night I am tortured by my mind. In the morning I face the nightmare of being alive.

It’s been exactly one year now since I had to leave my job, got my referrals to the pain clinic and mental health community Access Team, and entered this surreal life of waiting.

I spend all day, every day, simply surviving, struggling to get from A to B. “A” being getting up, and “B” being the evening. I feel like a puppy left in the house all all day all alone. Other people get to go to work, to do something useful, to be productive or helpful or… something. I can do nothing but sit and somehow pass time or entertain myself until everyone comes home again.

If I was a puppy, then I would chew everything in here. Instead, I play games, watch the TV, scribble random ramblings, or mess around with my computers. Anything to while away that time. To get from Point A to Point B… because time is just there and you have to experience it somehow, because it’s not going away. Time is there whether we like it or not, and when you are unable to do anything with it, it is not only wasted, but torturous to endure. Particularly when you are used to the freedom of being able to choose what to do with it.

Struggling to do the basics whilst I’m here on my own is also not so much fun. You take for granted so many things, but never realise it until you can’t do them anymore. What I really miss right now is being able to make my own lunch… a nice lunch, not god-awful wafer-thin ham or turkey in some bread that takes about 20-30 minutes to prepare, with picnic cocktail sausages or mini sausage rolls on the side, because they’re already cooked and ergo easy to make – even I can take a couple out of the package and put them on a plate. I even miss eating packaged sandwiches from shops, having their “meal deals” with Starbucks or Pret coffee at my desk whilst I’m working.

All this has been taken away from me because the NHS can no longer get their act together, thanks to all the cuts and re-modelling structures they’ve been put through. Both the physical and mental healthcare ends have let me down completely, and as a result I am left in permanent limbo. I’m used to being let down by the NHS – despite knocking on their doors since I was a child, they have constantly and consistently let me down. Somehow, though, this really is the stinger in the tail.

 

Breaking Point

Thanks those cuts, the broken NHS, and their incapability to now help those in need, I have spent nearly a year and a half just waiting. Waiting for help. Waiting for a diagnosis. Waiting for… anything.

It is certainly clear to me now that if the government wants people to move from ESA welfare support into work, it’s the NHS they need to look at first. Because it’s taken nearly a year just to get a single followup appointment to see my hospital consultant, it has put me out of work already for nearly a year and a half before even getting to see someone or getting a diagnosis.

When I started this journey, it was pneumonia. Now, there’s nothing “just” about pneumonia – it’s a painful illness that makes you feel like you’re suffocating in painful agony – but in comparison to this, it’s much less complicated. At least it has a name.

Now it’s just “severe widespread pain”. Not exactly catchy, nor a particularly affective diagnosis.

First, it just became some widespread pain. Over time, the pain became worse. Very much worse. Four months after it started, it was bad enough that I could barely move and I certainly couldn’t work, so finally, my GP referred me to the Pain Clinic.

Three months after that, I finally received my first consultation… but by this time it was now already seven months since it first started. I thought that this was finally my way out of the woods. I wish I had known then that it was actually only the beginning.

They were late. I was rushed in and out. He barely looked at me. I was prescribed Pregabalin (Lyrica) for the pain. Neuropathic pain, they called it. But that was the total of the information offered. No diagnosis, no prognosis, and that was the extent of the treatment given. Some meds. An MRI was ordered for diagnostics. That was scheduled for a month later. The next appointment, though? Not for nine.

It was the beginning of more waiting. More time lost to sitting alone, unable to do anything. More time to while away, between the pain starting and some kind of answer. I don’t hold my breath for any “cure”. But something to help – even if it’s just a name to work with, so at least when people ask my why I’m in a wheelchair I can actually give them an answer.

Until then, I just wait.

 

Headless Chickens

No more has been done to help with the state of my mental health than with the physical. My mental health has never, not ever, in my life been anywhere close to “good”. But I don’t think I have ever been quite this bad before.

I do know have the “EQ” (like IQ but with Emotion instead of Intelligence) of a toddler at the best of times (apparently a side effect of the Aspergers…).

Medication has left me completely completely unaware, not attached to realism or what we measure it by – time, place, date, connections. The rest of it has been taken by the pain. I am disconnected and feel like I exist in a surreal dream where there is no time .

I don’t remember when I slept properly last. I’m beyond exhausted, which doesn’t help my mental health – they’re not kidding when they say that sleep deprivation leads to delusions and temporary insanity, and I can vouch for the fact it’s a valid form of torture.

I asked for mental health support at the same time as my referral to the pain clinic. I was referred to the mental health community Access Team. Whatever money they receive is wasted… they have no idea what they’re doing at all. I was shifted, shunted, given excuses and, finally, blatantly ignored.

After a hissy fit about six months later, they finally referred me onto their new ASD unit – which despite several requests regarding assistance to receive a diagnosis, I was never told of before, let alone referred to. It took me fighting for six months to be heard… just another kick in the teeth from this ridiculous organisation.

The ASD unit itself it not a part of the NEL NHS. Hence, I received a consultation quickly and given a followup appointment and effective diagnosis quickly after. They recommended CBT treatment, and therefore I finally received an appointment for an assessment with a psychologist ten months after I first requested one – and only because the out-of-area ASD specialist unit recommended it. Not because of the original referral to the Access Team, who have effectively ignored me the entire time I’ve.

Here’s the kicker though – now I’ve finally been assessed and put on the waiting list, it turns out that waiting list has an average of twelve months. Twelve. A year. After the year I have already waited. I have spent the past year struggling desperately. Breakdowns, meltdowns, arguments, panic attacks, terror, depression… I’ve been through them all without the support or help I asked for a year ago. I’m still waiting for it.

My GP and ESA advisor suggested going to anther arm of the mental health service. I called them, but they simply stated that because I was on the Psych Services caseload they could take me. It was one or the other. I had to be “discharged” from Psych Services before I could be seen by them… despite the fact I have not even been seen once and on a very long waiting list. I was under the impression that this second service was an interim, a counselling service that would help me cope until I could see a CBT specialist. Not so the case. It’s a choice – either a long waiting list to see a specialist, or accepting basic counselling now. It’s a cruel choice to ask someone to make, and I am genuinely shocked that with such long waiting lists that there isn’t an interim to help people whilst they wait.

 

Broken NHS

North East London NHS Foundation Trust seems to be in shambles. There is clearly not only a lack of funding for the amount of people who must require treatment for such long waiting lists, but whatever funding there is clearly isn’t being used properly.

I can neither get a prompt appointment to see the pain clinic, nor can I get any therapy to help me deal with the situation whilst I wait for a solution to materialise for my pain. Not only that, but their lame excuse for a community mental health team is in shambles, offers no services, and is a joke. For all their posturing about what they offer… well, they can’t seem to actually deliver it.

After one year of waiting, and with nothing to show for it, I’m frustrated, disappointed, and hugely infuriated by the lack of help I have received from them… Even with the calamity of the services in North Wales, I had help quicker than that. It was pointless and substandard help, but it was an attempt at help at least.

I get the feeling that the only way I’ll get half-decent treatment is to move. Far away. Anywhere that’s outside of the NEL catchment area. The Post Code Lottery… Even within the great city of London you play the Post Code Lottery now thanks to the whole NHS England Foundation Trust remodelling and 18 Week Waiting list palaver.

I suppose that’s what you get when you run the NHS like it’s a bank.

 


Waking Nightmare

Nightmares and horribly strange dreams disturb me through the nights. Waking up it feels like I’ve been beaten half to death by an angry mob, then hit by a train and left to die. The waking nightmare I dearly wish I could wake up from, but never can.

Every day I have to face somehow dragging my bruised and battered and broken body about… Except those invisible injuries are known only to my brain; they’re not real. There are no injuries. No bruises. No broken bones. Yet my brain feels every one: every cell and bone and joint and muscle in my body screaming, leaving breathing a difficult and laborious task. Walking nearly impossible without screaming pain searing through my head. Standing; a parlour trick to manage without falling back down again: stumbling about, clinging to things like a child, or wabbling about with a cane like someone three times my age. Worse. My grandmother is nearly 95 and in a much better condition than I am – and she’s hasn’t had the easiest of times herself.

I’m about to turn 34… but you may as well put a 1 in front of it. I’ve nursed people in care homes who were in a better condition than I. I’ve done quite a lot, though, stuffed a lot into those years. Maybe too much, helped whatever this is along… I’m glad I did though – at least if I can’t do anything now, I know I had a good time back then. Galloping on horseback along the beach, flowing yoga ashtangas in the house, dancing and singing leading roles on the stages of the West End, songwriting and classical singing, walking miles with Doggy. Memories… Distant and fleeting, but I know I did them. Once.

But… My brain cannot deal with the fact they’re now gone. My brain cannot deal with not knowing if they’ll ever happen again. My brain cannot deal with this level pain: no creature should have to deal with this level of pain. My brain cannot comprehend the fact I somehow fell down this rabbit hole overnight, and can not only never seem to get out, but keeps falling further in. I want to click my heels three times and call for home… but I already am. But within some strange existence. One where everything I took for granted is now… well, it’s barely even a memory. I don’t have much of one of those anymore, either.

Life is a haze. A strange and surreal dreamlike existence. One where where hours and days and weeks, even months, blur together into a dreamlike haze of… ether. I exist now, with very little awareness of past and future. The haze of “this very moment”… a bit like being rather drunk, maybe under the influence of other things (but I wouldn’t know about that… I get too much of all that from the pharmaceuticals I’m prescribed). You’re not really aware of anything, or where you are, or who you’re with, or if what you’re seeing is really even real. It’s unnerving… scary sometimes. It comes from the medication, I know, but that doesn’t really make it much better.

From one nightmare to another, it feels like I never sleep… and I never wake up. Exhausted, in pain, dazed and confused… yes, I feel sorry for myself quite often now. It’s a new trait that makes me want to kick myself – and I probably would if I could. It’s been 16 months since this started. It’s one year since I emailed my boss to let him know I could no longer do my job. Nearly one year since my last contract came to a sad end.

It hurts… as much as the physical pain does. So I try not to think about it. It’s hard not to. I’m stuck at home, feeling useless. I can do a bit of tidying away… that’s the extent of the housework I am able to do. With an extraordinary amount of help, and by sitting on a bar stool (a makeshift “perching stool” that was way cheaper than getting a real one) I can cook my specialty food, every now and again, with the help of alcohol to dull the pain further so I can manage it.

Walking with the dog has now been taken away from me too. After a few weeks of not managing it, I tried one last time the other day. The result was the most unimaginable agony that I had experienced since I started taking Pregabalin and Devil’s Claw. It was, well, indescribable, I suppose. Way off the 10 scale, and well into the 1000 scale, I think. It’s been two, three days, and the extra pain is still there.

It’s the only thing I had left. Now that’s gone, too. I really can’t go out on my legs anymore… Even to walk a few steps outside, I need2 sticks, and apparently I can now do no more that walk a few steps like that… but even that is painful and difficult to do.

They don’t know what’s wrong. I don’t know what’s wrong. It’s the not knowing that is the worst thing. the least they can do is lookTestCheck. I’m still waiting for my follow-up appointment for the pain clinic. I’m counting down the days. The clinic appointment is on my grandfather’s birthday… there’s a superstitious part of me that wants to believe there’s something in that; that it means something good, or at least significant. After all, you never know. Another 3 weeks to go… after  8 ½ months of waiting already, you’d think I’d be used to the wait. This last stretch just makes it feel like even more of a joke. I’ve had nothing but an MRI scan. The only thing they have done is prescribed Pregabalin. Cuts to the NHS have made it impossible to have the service required and expected. No one should wait nearly an entire year to be seen for a followup appointment to an undiagnosed problem that’s degenerating quickly.

Until then, I will continue to live my waking nightmare. Suffer the dream ones and exist in the real one. Maybe one day, I will get to wake up.

 


Do Not Give Up... Beginning

 


%d bloggers like this: