Tag Archives: medication

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

Wonderland

Annie sang about “Tomorrow”. Everyone talks about “Tomorrow”. Everybody waits for “Tomorrow”. It’s “only a day away”… Right?

But what if tomorrow never comes? And if you think is has, it’s probably just an illusion. One that shatters really easily as soon as you let your guard down. When you’re vulnerable to attack.

I thought “Tomorrow” had finally come. I had what I had always wanted, and thought I had found some peace. I thought I was now far away from the Lewis Carroll-esque madness of Wonderland.

But… no. I was not.

I was a moment from being pulled back down that rabbit hole again… and here I am. Again. Living in that same fire-and-brimstone, crazy, bizarre, seriously-gone-wrong hallucination even Tim Burton couldn’t imagine. The one that is oh-so-familiar, because I’ve been here  before. In fact I lived here for many years. Way over a decade. And now I’m back. Hello “Wonderland”. My “Tomorrow”… and every other day after that.

I am hurt (falling down fictitious, imaginary rabbit-holes to a form of tripping hell apparently hurts…), I am confused (who wouldn’t be…?), I am scared (same again), and there is apparently no way out (…great). After two and a half years of living in it, after being away, free to live my own life in “normal-ville”, my “old home” is now more of a stranger to me than perhaps it was when it was new.

Have you ever left home, gone away for many years, then come back and not really known what to do with it anymore? They’ve changed some of the roadways. There’s some new areas, new buildings, new and expanded sectors of real-estate – where there were once fields, there are now homes with families long living in them, new shops where familiar ones were, or you just don’t remember your way around anymore. It’s a place with a huge culture difference, even a language or accent/dialect difference.

As you can guess, I’m going to say returning to “Wonderland” is very much like that.

 

Wonderland

And what exactly is “Wonderland”? It’s a dark place where your worst nightmares come true, where unbearable pain is constant and consistently agonising (whether physical, emotional, or both), where the incredible and unbelievable (in a bad way) happen, where there are catastrophic events exploding over and over again, where if there can be a set of events that can ensure the worse that happen, it absolutely will. It is a dark and abstract place that doesn’t feel like your life, and yet – somehow – it is.

The only way to survive living here is to keep your hope close and your cynicism and wariness closer. Where you expect the worst, and maybe hope for the best… or at least something that isn’t the worst. And sometimes it’s where you’ve got to simply expect something literally unimaginable: This is the place where “imagining the worst” doesn’t even come close to what actually  ends up happening. You cannot relax for a moment – letting your guard down is a chink in the armour. Then it will get you and take you down into deeper darkness again.

To (hopefully) many, this sounds over-dramaticCatastrophic. Probably even bizarre. But it really isn’t when you’re living it. There’s a strange life some of us have to lead where pretty much nothing goes right. Ever. I call it Wonderland – because it’s as cold, dark and trippingly-bizarre as the place in the books. It’s a place of nightmares where nothing seems real, and that it really all just a dream you are going to wake up from. Any time now. No, really. You will…

It’s the place where you live those real nightmare every day, and you can never wake up because you’re already awake. Where everything has been taken away from you, leaving you with nothing. Just a crumpled ruin on the floor left in pain and still being kicked. Where the moment you think you’ve managed to run away and escape it, it sucks you back in.

 

My Wonderland

The first time round, I was a child with (as I now know) undiagnosed Asperger Syndrome, severely bullied at school, living with a family going through its own excessive, and quite frankly cruel, trauma and turmoil. It was a long, complex, agonising, confusing and heartbreaking 15 years of my life, which was added to the first 11 years before of simply being “difficult”. What happened after that age was simply impossible and (not an over-dramatisation in the least) incredibly traumatic. Even to point of being treated for PTSD by the time I was 18.

I was labelled “Depressed” and everything was left at that. As if it was the magic word and it was the beginning and the end of everything. It didn’t come close to even touching on what was actually wrong, and I wouldn’t know for another 21 years what was actually going on. In fact, this “diagnosis” only compounded the situation and only made everything so much worse. It included drugs and therapy that was highly inappropriate, no support for what was really the problem, and ongoing despair because nothing seemed to work to “fix” it. No matter what I did, I never seemed to get any better. It wasn’t until I discarded everything that I presumed that I should do and did what I wanted to do that I started to get somewhere helpful, and to a place where I felt a lot more comfortable with myself, even if it wasn’t exactly perfect or completely “fixed”. It was still so much better than it had been  before.

Coming out of that just before turning 30, I thought I was going to be “home free”. I was climbing out of Wonderland. I was living better, with a exciting and interesting new career I was damn good at, that I worked by backside off for, and with a sort-of new family of my very own. Even a new dog. It was too good to be true. I even wrote about how great things where going in my (handwritten) diary. It was my last entry of that year. And it was too good to be true.

Because then Wonderland called again.

And when the darkness calls, when it beckons, and you don’t comply… Well… It comes and finds you to drag you back in again, even if you are kicking and screaming.

It was October 31 2013. Halloween, of all days. Samhain (pronounced ‘sow’inn’) is Pagan New Year. And what a New Year’s present it was that I received. Early in the morning I was walking the dog with my roommate and best friend in the park. This is the day where he was subjected to an ongoing ferocious attack by another dog, actually instigated by an well-known and unstable dog-walker/owner (no-one knows which) – I actually heard her call the dog to attack mine and I was horrified.

My friend and I were left to the two dogs fighting, whilst the other person literally ran away. It took maybe 15 long minutes of ferocious dog-fighting to get the two of them apart – and my friend took away the other dog (who once was taken away was back to normal, since it he was only doing it on command). I was left with Soul (our dog), with him injured and me being able to no longer breathe. The ambulance was called because we both presumed it was an asthma attack (horrible, but run-of-the-mill, as things go). But they got this strange look on their faces and told me it was not asthma and that I urgently needed to see my GP – who saw me right away after I explained what had happened and what they had said.

I was stunned to find out it indeed was not asthma. Oh no. Life is just not that simple. It was sodding pneumonia. Right at the onset if it, which is why I hadn’t been massively affected, with symptoms that I had assumed was just down to asthma. This wouldn’t have been such a complicated matter if this wasn’t also the very same week that – on top of my dog being savagely attacked – my friend and I were moving apartments. To the other side of London. Due to this illness, I managed to wheedle a few days off work to move house and try to deal with the pneumonia whilst packing boxes and sending them across the city. I had the antibiotics, I had taken the dog to the vet (straight after seeing my GP), and had very ignorantly presumed it would all right itself out in the end.

When we arrived at the new place there was unpacking to do and an injured, freaked out dog to deal with, who also needed walking in an unfamiliar area and living in a new home. At the same time, I was also expected back at work after just a week because there was an “emergency” there, along with vital things to do that no one else was trained for. I walked the dog every morning before work and then made my way on the 3+ hours’ round-trip journey to work from my new place, which included getting a bus, then the tube, changing tube lines, then getting another bus. Each way. And squeezing in a 7 hour working day as well. So to say I got absolutely no rest from the minute I was diagnosed and onwards was an understatement. In fact, I had not done so much at once for several years… let alone whilst being unable to breathe properly with a temperature and constant, quite violent, coughing fits.

I had drastically underestimated the severity of my illness. It is almost needless to say that it just simply went downhill from there. I gave my body not one moment of true real rest or respite to recuperate from the illness… so it just got worse. Out of hand. My body basically started breaking down – instead of being allowed to get better, it simply deteriorated. It couldn’t get better, so it just got worse. Every day for two years it deteriorated, each day being worse than the next. The awful decisions I made began a terrible chain of events that sent me on a downwards spiralling tailspin I could never recover from… and that is something I will always have to live with for the rest of my life.

Consequently, I was dragged back into Wonderland. Only I couldn’t really be kicking and screaming because I could no longer actually particularly move. My life as I had known it was over. Now the nightmare really had begun. Wonderland beckoned once more, and I had no choice but to fall down that terrifying portal-esque rabbit-hole again.

 

A Life In Wonderland…

Fibromyalgia was my burden to bare for my choices. My choice to stay employed. My choice to return and help out at work. My choice to look after my new house. My choice to keep earning money to pay the new (much higher) rent, along with the bills. My choice to look after my dog. My choice was to support my friend by walking the dog on my own because my working hours weren’t set and hers were.

My choice was not to look after myself.

So Wonderland called.

Living here again has been heartbreaking and terrifying. One by one I lost everything I had as I descended into the rabbit-hole… my career, my mobility, my dignity and self-respect, my mind… then finally my best friend and my home.

I was effectively sent home to live with my parents again, like I was regressed to being a small child, because they were the only ones who could look after me. My father was only part-time employed (after retirement) and my mother a nurse, so she had the perfect background and skills to help me. I required almost round-the-clock care because I could no longer do most things for myself – much to my immense frustration and despair. I was 35 and was having to live like a toddler again… and one in complete and constant agony. It was – is – quite frankly, humiliating, heartbreaking, and soul-destroying.

But that is what Wonderland is. That’s what it’s all about. There’s no sunshine, bunnies and rainbows for you here… this place is about breaking you until you have no more to give, and yet still absolutely expected to be carrying on with the fight.

Giving someone with hyper-sensitivity to pain from Asperger Syndrome Fibromyalilga, of all things, is just cruel. It’s like locking two mean adversaries into a single, small room and locking the door. Without looking back and throwing away the key. You can guarantee they will not play well together whatsoever. The reaction is explosive and the destruction is absolute. They will not agree and they refuse to even agree to disagree. Ergo there is nothing but chaos and turmoil… both of which are also great arch-enemies of Aperger’s. There are no happy endings to be found here… nothing left but ruination and rubble from the war inside. Everything is destroyed, and there is simply nothing you can do to rebuild it no matter how hard you try.

So, I have no job. Not much mobility whatsoever (but I’m working on that). An existence that involves living every waking second in extreme pain (and that’s before trying to move).  I lost my home. I lost my best friend. I’m living with my parents. I am alone. I lost most my memories and half my mental capacity and focus from the pain and medication. It’s now difficult to remember and learn new things, to focus, to concentrate, to even cope with new things. I have suddenly found it so difficult to focus on reading for the first time in my entire life. The pain in my hands makes if difficult to type or play games. I can no longer sing, play piano, or think of music. It feels like I left everything behind back on the “surface”, before falling down the hole. It feels like I have nothing, and I have lost everything.

Well, there is, regardless, a flip-side… Wonderland takes away everything, but in that it also teaches you a lot of things.

When you are forced to live in the dark, you learn to see in the dark. You learn to adapt. You learn to prepare for the worst, and to expect those things you feared the most to become reality. You need to have the will to survive, or you die in there. Every day is a lesson learned, a new way to survive, to learn to live in Wonderland, in the nightmare you cannot believe can be real, despite actually living it every day… hoping every day you get to wake up from it… and never doing so. Where you wake up from nightmares into another one. Where the darkness and despair never really goes away.

Somewhere in this mess, I have learnt who – well, what – I really am… I discovered all those things I went through as a child, and even when I was all grown up, was down to my having Asperger Syndrome. At the very least it complicated matters that were already complicated, if it didn’t cause them directly. Discovering and confirming this fact that I otherwise never would have found without this… disaster… has brought at least something positive in with it, taught me a lot about myself, acting like a candle in the dark. One I can see a little with, so I don’t feel quite so… lost and alone.

However, this small candle gives cold comfort in a world where nightmares and worst-case-scenarios are not just real but actually “normal”… It’s literally where my greatest fears and waking nightmares have happened, where those worst-case-scenarios I had imagined were candy-floss and kitten-fluff in comparison to what really happened. I can’t walk. I can’t really move much. Some days I can hardly breathe, all from the pain. I have nothing left of the life I once had, and I’ve been ripped apart from almost everything I used to hold dear. A small candle cannot extinguish that kind of pitch-black that fills the air around the world I am now forced to inhabit once more.

This life hardens you. Even when you’re weak, you are not. You never give up because you can’t. If you do, then it will take you down to its greatest depths of obsoleteness and despair… which by then most people can never fight their way out of. So you keep fighting before you get there. Some of us were born to struggle. To fight. To slay demons. To be warriors in the dark, fighting frightening, strong, and terrifying shadows whilst being broken by utter and complete heartbreak. It wants to see how much you’ve got, what you have to give, how far it can push you, how far it must to go break you. Then when you are broken beyond repair, it sees whether you can still drag yourself up and fight on. Regardless of the pain you are in. Regardless of the burdens you bare, and of the pain inside.

Victim or Victor… it wants to see what you decide.

 

 

Final_Diary_Entry_26.08.13[image2].jpg

The final tipping point of even ground, and the threshold of demons: Too good to be true… And it was.

 A snapshot in time – Moments before it all went so wrong: The final diary entry before everything crashed and burned around me…

 

Nobody_Will_Hit_As_Hard_As_Life.png
 


Medication Mistakes

Sometimes I wonder if I am cursed. Whenever I hope I have finally hit rock bottom in my life, that I have fallen so far into the abyss that I have come to the end of that endless black hole, whatever I think I’ve hit gives way and I continue to fall again. Sometimes I feel I am walking forever through the fires of hell… through a crucible I do not understand. Where there are actually several of them, or one long one, I am not sure of. Sometimes it feels like both at once. All I know is that it never ends.

There’s many reasons for my melancholy… my depression. Unfortunately, I strongly believe one of them is chemically-induced. I should have taken the information on the paper inside the medication box more seriously. But I did not.

I was given Prednisolone for severe asthma difficulties, a typical complication of a rather bad upper-respiratory infection. I was given it after a nebuliser did almost nothing to ease my constant and searingly painful coughing as a result of inflammation in my lungs. It’s a normal thing to do, and I’ve been given it several times before. I had no real reason to believe anything untoward would occur.

I read it in the PILs (Patient Information Leaflet) paper, but I’d had this medication before and thought nothing more of it. I disregarded my own sensitivity to medications, and my current situation. This error has made things that are already pretty bad so much worse.

The warnings are made clear – I wish I would have heeded it:

 

Prednisolone should be used with caution in:
… those who have ever had severe depression or manic depression (this includes having had depression before whilst taking prednisolone or a similar medicine or a member of your close family has had these illnesses)

 

Mental health problems such as feeling depressed (including thinking about suicide), feeling high (mania) or moods that go up and down, feeling anxious, difficulty sleeping, difficulty thinking, feeling confused and losing your memory, feeling, seeing or hearing things which do not exist, having strange or frightening thoughts, changing how you act or having feelings of being alone

 

Since taking the Predisolone, I have suffered such severe anxiety for many, many days. I couldn’t sleep from it, and once was up for over 60 hours straight – nearly 3 days of no sleep. I broke it with a short nap one afternoon, once my anxiety levels started to diminish slightly and my body could take no more. Two days before then, I stayed up all night, and the night after, barely slept at all, only for perhaps 3 or 4 hours between 6 and 9am.

Once in a form of stupor, not real sleep, I would not wake, but be confused and frightened when someone came to give me medication in the morning, trying to “wake” me to do so, triggering (I think) some kind of severe panic attack of extreme confusion  and anxiety. Eventually I would come round, maybe an hour or two later, with little memory of anything except being afraid and with a horrible, searing headache. As well as this, I had continuous meltdowns due to the excessive anxiety I was experiencing (and ASD gives me enough of that as it is, I do not need any more).

I had 5 days’ worth of medication, but the effects have continued after they have finished, with severe depression and suicidal ideation, even an attempt yesterday – but luckily someone was there to stop me doing anything drastic. The meds finished three days ago, and the effects have barely diminished. The only difference now is that I can sleep a little.

Right now, as I write, I feel a terrible, awful and overwhelming feeling of dread, hopelessness, anxiety, pointlessness, nausea, and panic. I want to just hide in a dark corner and cry hysterically. I want the world to go away. I genuinely want to die – for it to all end and go away. I have enough to contend with, I am nothing but a burden, and so see no good reason I should continue to exist to be a pointless burden, and to endure this suffering. I am so exhausted I cannot think. I am in so much constant pain. I just want it to end. I really, really do.

But it’s all… “fake“. Real, but chemically-induced. It’s a side-effect. It is completely and absolutely traumatising, because I know I inadvertently cause it, because I did not heed the warnings I clearly saw and read before I took them. I should have taken them seriously, but I dismissed them. Now I am paying the price, and I don’t know when it is going to end.

I feel I suffer enough – I am not that person who can deal with loads of stuff with a shrug and a smile, or even deal with them at all in any way. The ASD and fibromyalgia are both extremely difficult to live with, particularly since they contraindicate each other quite severely. To have this complication now with the side effects of Predisolone… it’s now too much to bare. Too much to carry. It is breaking me apart… what is left of me, anyway.

To make it all the worse – the damn stuff didn’t even really help. My asthma is still bad. I am obviously not going back for any more. I shall just wait and bide my time and allow my body to heal on its own, allow the inhalers I have to do their job. I  have no other choice, because I’m clearly not about to have any more of those things to help.

The pain from the asthma and coughing is horrible. On top of the pain I already endure, it is absolutely too much. What makes it all the worse, and more difficult, is that the coughing, the extra pain, the headaches it causes, and the exhaustion I have (I still do not sleep properly, and have maybe 4 hours’ sleep a night, which is nowhere near enough) results in my not being able to play my games – my absolute lifeline in everything.  Without them, I do not have my “comfort blanket” nor the mind-clearing, mind-settling properties it has for me. I feel as I am left abandoned in the dark without a light and no way of seeing my way ahead.

The stress I now feel, the horrible feelings I have, the pain I want to cry… it is effectively mostly fake. Of course, there are the base-feelings, but they are never this strong so constantly. They are horrible to live with and remind me of my childhood when feeling quite like this was normal… and justified. But although things are bad now, I have not had such horrible feelings like this before – as bad as they’ve been, they’ve never been this bad.

I wish I had never taken that medication. It was not worth it… Far from worth it – especially since they have barely helped. Three days after I finished taking them, I still have asthma coughing, and can barely move around without a coughing fit and asthma attack. Even sitting down, I still cough from it. It burns, sears, in my chest, then the exgreme coughing fits themselves create pain in my head,  neck, hips, back, ribs, shoulders… all those muscles (etc.), which are already severely painful, are being ripped apart.

The Predisolone did not stop it. So when it gives me such horrible, traumatising, overwhelming depression, anxiety, dread, a desire to self-destruct and annihilate my existence… I cannot deal with it. I am afraid of what I might try and do. I keep trying to remind myself it is a passing phase brought on by man-made chemicals that are not good for me. It’s is not quite how I really feel – that it has greatly exacerbated the way I really feel, and that I need to ride it out.

But riding it out is torturous. I can’t even distract myself with what I love most – my computer, games, reading. I can do none of these things. I am reduced to a highly distraught, shaking, fearing exhausted ball who can only stare at a screen. Hoping the noise from it will drown out the horrible things in my head and my heart. I want to sleep. I want to cry. I want to leave this world. I want this all to stop.

My history should have been taken into account, and the prescriber should have been aware – and made me aware – of the dangers, given my history. I have a 23 year history with complex mental health issues… it should have been taken under consideration. No one said anything – but I have a habit of reading the PILs just in case for every medication I’m not completely familiar with. I’m glad I did this time, or this would be even scarier than it already is. I imagine how I would be if I wasn’t aware it was the result of side effects from medication. I may have already succeeded in doing something bad. Or worse.

Luckily, I read the PILs and made myself aware of it. It just goes to show how important it is to read what the pharmacies package with their medications. It’s important. And you can’t rely on your doctor or prescriber to make sure they’re giving you something suitable – time constraints and habit ensures they give out things without really thinking it through or checking with your notes, history, or even yourself when it comes to contra-indications.

Always read the PILs, not just the outside labels. Then take them seriously. The paper isn’t just there for decoration. I’m really glad I read it… but I’m really regretful that I did not heed their warnings.

 


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

 


No Expense Spared

After all this time, it once again occurs to me more an more how ironic – and moronic – is it that when you are not able to work due to illness (or accident or any health-related matter), your life suddenly becomes much more expensive and you have much less money to do it with. The expenses of just being ill is astounding… and somehow you’re to manage to pay for things despite having much less to do it on.

I’m not sure how the true so-called “benefit scroungers” manage to exist on just whatever they’re given by welfare, or how it doesn’t occur to them to get jobs instead of struggling on these minuscule “handouts”. Unless the only ones who do also have secret jobs on the side. I barely make over 50% of what I used to earn out of these “handouts”, and yet I’m somehow expected to pay for more things, expensive things, out of them.

A wheelchair. Walking aids. Bathing aids. Cabs. Extra over-the-counter non-prescription meds. Joint-Care pills and vitamins. The things you didn’t need when you were healthy enough to work. And those are just some of the obvious ones. Then there are the hidden ones  – energy/utilities are not subsidised just because you can’t work, yet because you can’t work, you’re at home all day, you subsequently use way more electricity/gas/water than you do when you’re working all day. Especially when you’re a tech-head and use high-energy computers and consoles all day. Then there’s the also rent – the the Local Housing Allowance (LHA) doesn’t cover real London rents – not even half (literally), so you have to find whatever’s left out of the money you need to use for everything else.

I’ve just agreed to hydrotherapy to try and help the pain, and hopefully strengthen my arms and legs a little (due to pain, there’s some weakness starting to become quite pronounced). For this, I will need to pay for the cab fares to and from the hospital several times a week, and pay for a swimsuit – I have not owned one of these for at least 10 years and am now forced to find one when I really don’t want one. Unfortunately, they’re also now really hard to find because it’s the tail-end of summer and they’re almost all out of stock… apart for the more expensive ones no one wanted to pay for. Naturally. So there’s more things I need to pay for I otherwise would never need or use.

 

When you used to have money and then you have none, it hits pretty hard – surprisingly so. Especially when the place you live in, which was within your means when you got it, is suddenly too expensive, and housing assistance is limited… proving your suspicion you’re paying well over reasonable rent rates and that private landlords in London are greedy predators. If I didn’t have a very good person, and an exceptional friend, living there with me, I’m pretty sure I’d be on the streets or back home with my parents… not where I imagined I would end up living in my 30s.

Once, the most expensive thing I used to pay for was M&S food and Starbucks. But I used to have a nice pay-packet to afford them. I managed to cope with using London’s TfL network (just £1.45 each way for the bus was quite affordable… or at least that’s how much it was back then) and didn’t require anything more than some occasional mild-co-codramols – mainly because I could afford a good diet and didn’t require any supplements. Now, it is such a different story, having to find money from nowhere to pay for things you never thought you would need to think about, and the things you used to think about get pushed onto the back burner.

Despite needing more than ever to have a balanced and healthy diet, I can no longer afford to eat well or properly – certainly not as well I am used to – and nor can I make good food for myself now anyway. That fact annoys me because I’m used to eating better, and better quality good food. I’m used to going shopping, getting fresh vegetables and making big vegetable pasta dishes. I’m not used to relying on what is essentially basic fast food, and trying to think outside the box when you’re physically limited with what you can make is difficult to say the least. Add to the fact you can’t even afford to buy the good stuff and your options narrow dismally.

It’s still strange to me that I can’t afford to go out, go shopping for something nice, eat nice food, just go out for coffee, go on outings, and certainly not on holiday (unless you count a trip to my parents’ place in Snowdonia…). I haven’t been to non-vital appointments at the GP surgery and have phone call appointments with my doctor. I struggle to pay to go to the hospital for appointments, and I’ve just had to pay £40 for a round-trip to the (18-month late) ESA healthcare appointment – and I’m not even sure they are going to reimburse that. The point regardless is that I had to ensure I had the money in the first instance – and because of which, other things could not be bought.

 

The list of acronyms in what is effectively nothing more than pocket money is hardly worth it. It doesn’t cover anything. The only reason I paid for my chair and other things was the extra PIP a year’s worth of back-payments that came in all at once after my tribunal. Even with the “raise” in my PIP (now they finally accept I have mobility issues), and hopefully now one in my ESA, it is still difficult to pay for things that are quite necessary. To go out anywhere I have to pay for cabs, especially if I want or need to go alone.

No expense is spared from you when you have an illness that renders you unable to work. And in fact they tend to add up to more than you spent before. You lose your independence, freedom, work, income… and what you get in return is virtually nothing, and the government, other bodies, and even other people, see you as a burden on society. Then you have to pay the same for everything regardless, and more, on top of it all. Ironically, on my usual wage, none of this would really be much of a problem. With quietly nearly exactly half (40% in fact) of it missing, though, it’s pretty tough to manage.

I do end up feeling like I’m being punished. I can see now why people pay for certain insurances that pay your wage-equivelant if you get ill (unfortunately, they don’t cover contractors, though). Just when you need your money the most, you can’t earn it anymore, and because of your condition(s) you can’t earn the money you need to deal with it. It’s a cruel irony.

 


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.


Take A Walk, Not A Pill…

Take A Walk Not A Pill

Take A Walk Not A Pill…

 

Good Advice. 

But

What happens when you can’t really take that walk? Actually, what happens when you can’t really even take the pills?

It’s taken 18 months, but now I really am feeling like my body is becoming a little wasted – it’s weak and overly-stiff, difficult to move. Maybe it has something to do with my dreams, being overly-aware of enjoying the sensation of moving about within them. Maybe it makes me feel my lack of mobility all the more acutely. But whatever the reason, I really am feeling it now.

I am overly-aware that lack of movement weakens muscles, and weakened muscles causes lack of movement, and then the whole snowballing spiral thing starts with no end in sight. That was why physiotherapy was invented… but it’s not really useful when you’re not getting any.

I want to just get up and walk. Back straight, shoulders back, head up, strong legs, no pain, good gait, arms swinging at my side, going for a coffee, being relaxed and pain-free. Like when I’m dreaming.

I continuously forget that I can’t move. I end up hurting myself because I keep doing things without thinking. I want to stretch and walk. Perhaps bounce, maybe occasionally a little skip. I want to just clip the lead to the dog and wanter off down the road. I want to go on the bus, walk up the stairs and sit at the front of the top deck and look at the world from up there… I’m barely scraping 5ft tall when I breathe in and puff my hair, but in the wheelchair I’m pretty much half of that, so I like being tall on top of a bus.

I really miss walking. It’s something you just take for granted. Even now, it’s still easy to forget, and I try to do things that I can’t, then I fall over, or hurt myself.

I would definitely rather walk than take a pill.

Maybe one day that choice will be given back to me.


%d bloggers like this: