Tag Archives: anxiety

My ASD: Mistakes. Are. Bad… Very. Bad.

I’m not even sure why they even exist… but these physiotherapists are just such a waste of time. She screwed up again – and I pretty much had a meltdown about it, also causing a big set of severe Fibro spasm attacks. Hoorah

After going to so much trouble to get the right date this week so my mother was here with me, the damn physio wrote in the wrong date anyway into the diary when she got back, and after waiting and waiting and waiting, I only find this out after I call when she’s an hour late. So that’s two ruined days because of her, which has just sent an already troubling and difficult week into a horrible tailspin.

It is clear that no matter what acts or policies that are in place, nobody cares about how they treat you when you have ASD. It’s OK for them – they’re not the ones who have to deal with the meltdown (or at least severe anxiety attack) that is the result of this god-awful thoughtlessness. After trying to deal with it all afternoon, I had an anxiety attack and mini-meltdown later on in the evening, after that panic built and built and built. It in turn ended up in a series of severe spasm attacks that were horrific and painful. But she didn’t have to care about that, did she? No. She could be ignorant of it, never know about it, never need to care about it. It doesn’t affect her. So why should she care, right?

Apparently, that’s how they all think. It’s certainly how they all behave… And it’s just horrible. To the point of being traumatising.

20160920_173759000_iOSWhen appointments are made, stick to them. Don’t be late. Call if you’re going to be late. Isn’t that “NT” politeness anyway? Well, it’s vital in my world. I’ve already had PIP mess me around. I’ve already been thrown into hell with the isobars down at 1000mb level, unable to even breathe sometimes it’s so painful. I’ve already had a hell of a morning, starting with 3-4 hours of going through the motions of trying to get up – yes, that’s how hard it is. And I’ve had to get up super-early so there’s enough time to do all this and regain an equilibrium before the appointment…

And then after all of my efforts I find the physio didn’t even try to get this right. After we brought out the calander and showed her all the dates my mother was available. She still couldn’t get it right. The emotional turmoil of this, of all my efforts for nothing, that the fact she could make such a mistake that cost me so much… It’s just too much to bare.

There’s also the other point that I cannot even begin to cope with changes… as well as the horrifying realisation that she probably didn’t get the message I left with their reception to cancel the appointment she wrote up, and that she might come tomorrow anyway. When she wasn’t supposed to. When I told her not to… And then I have to cope with that thought, with that change, with that intrusion, because she wasn’t supposed to come tomorrow… It’s horrifying to think that she thinks it’s OK to put me though such a thing, just because she can’t concentrate long enough to put the correct date down. It seems so unfair. It’s not like they don’t know I have ASD… They just don’t care, or have a clue about it. Or care to have a clue about it.

Proving legislation and policy  is a complete and utter waste of time.

Tomorrow, either I’m going to be home alone when she comes, or my father remains here with me instead of attending his weekly visit to see his elderly mother. I don’t understand emotion generally, but I know that uncomfortable feeling of guilt. And that last option makes me feel a lot of that. The former terrifies the bejeezus out of me – I have no intention of being there alone with her. I’ll either say nothing, or say precisely what’s on my mind… which I’ve learnt that NTs do not want to hear. Apparently they’re allergic to the truth. The polite fluff they engage in is still beyond me, even though I generally attempt to emulate it. Probably quite badly, but hey… at least I try. Which is more that can be said for the other way – not many NTs [professionals] try to understand ASD-Land at all.

Like the physiotherapist. And PIP.

GrumpyBearI am “ranting”, but it’s so very horrible. “NT” people never seem to understand this – although some at least accept it. I’m terrified of tomorrow (and that’s actually an understatement), and the fact the isobars are still on the floor are not helping. It’s going to be a long morning, at the end of which, I have to call the receptionist back tomorrow to verify the appointment has been cancelled and the physio is not coming. She was supposed to call about it (the physio, that is) and reschedule, and she never did. With that evidence I can only conclude she thinks she’s still coming here. It seems that if she has a mobile phone, neither her receptionist nor myself have the details of it to contact her directly when she’s out.

I knew they were a waste of time, but since the initial attempt at contact was a farce. It’s not ending, either. It still is. I can’t see any reason to continue with this – it’s one extra burden I can do without, given there’s no payoff from it. I’m already ahead of her game, and so far she can offer nothing better. So I’m wondering why I’m spending the effort of enduring hours of pain and torment to get up in time for her to come, when she’s not actually even coming in the end, because she couldn’t do one simple thing right – write an appointment in her diary on the correct day. And repeating it all again in case she turns up tomorrow. It’s harrowing.

I really am honestly scared of facing tomorrow. I hope I get some sleep… It’s “only” 1:49am as I write this now. And there’s a long night ahead…

 

A Question of Sanity

 

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Waiting For The Axe To Fall…

So… today is the last day before my PIP re-assessment. Needless to say I’m terrified and freaked out.

They’re not nice people, and their job is to try and find ways of undermining your suffering to make sure they don’t have to give you money to live on.

Thus, I am not looking forward to it. Funny that.

Today has already been a nightmare without even factoring in that hovering over my head like a black cloud on Eyore. The isobars have been on the floor again (1007mb) and I could barely move my fingers, let alone myself. It was a big struggle, and although I am glad I got some things done, I am not pleased that I did it. It was really difficult, painful and completely draining.

img_0886It wasn’t even anything big… Well, it was to me, given the weather (torrential rain and chilly), but in and of itself it wasn’t big. I was barely able to get out of bed, or downstairs to my chair, or function. So doing this did feel like a huge mountain to climb.

I was in constant panic attacks and major anxiety (and I still am – my mother, a nurse, came up with a clever way of helping me by emulating the paper-bag trick but using my inhaler – taking it without actually using the pump… it works!). Eventually, I managed to get myself together enough to go out to the new Waitrose in Chester, so I could get some good food to get more nutrition and look after myself better. The place was great and I got some lovely things, including fruit to go in my new Purition protein smoothies. Now I’ll at least have an entire week of nothing but good, wholesome and nutritious food, with my new mountain of fruit and veggies from there.

Unfortunately, it was also extraordinarily exhausting to do this, and by the time I got home I couldn’t even function: I could barely transfer from the car to the chair, I fell when I went to the bathroom, and I had multiple panic attacks. I have no doubt I will not be going to sleep at a reasonable (as in before 6am…) hour – although I can’t imagine what I am going to be doing with myself now. I’d like to think it would be playing games, but I can’t see it somehow…

On the up side, I finally got the Mass Effect Andromeda Loot Crate that I pre-ordered back in March… And it was well worth the wait!

  •  A Gorgeous Pathfinder hoodie
  • 2 lovely plastic children’s(esque) cereal bowls emblazed with the Mass Effect Andromeda Cereal logo around it (especially for geeks!)
  • 2 gorgeaous, heavy (real) whiskey glasses embossed with the logo of the Nexus’ club, Vortex
  • An adorable model of the Nomad
  • An Andromeda Initiative Medalian Coin (huge and heavy!)
  • A Pathfinder Patch
  • Pins of Tempest and Andromeda Initiative
  • A [short] Dark Horse graphic novel: Mass Effect Discovery #1
  • A Normandy Datapad-shaped card with all the details of the Crate on it

I was amazed by it – it was really so nerdy! Worth the wait and the price. I’ve no doubt I will be hiding that hoodie as soon as winter comes! 😋🤓😎

And now… Well, I just wait. Wait to go and face the guillotine that is Capita, PIP [Mis-] Representatives.

Oh, Lordy, I so do not want to go!

20160701_221010000_iOS

 


MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.

 

 


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.

 


Lost

Fragmented… Scattered… Chaotic…

 

Hell.

 

It feels like the hard drive in my head has had its entire system wiped by a virus. Another nervous breakdown, another existence of knowing nothing. It’s like everything that was before is gone. I have no inclination anymore of how to be, how to live, how to do the most basic things in life of existence. It was never easy before, but I stumbled along and did my best — but whatever I learned then seems to have gone. Wiped away by the virus embedded into my code. Code I have no idea how to re-write. I certainly have no idea how to restore it, or if that is even possible.

 

As always, I can do nothing right. No one wants to be around me and my “insanity”. They don’t understand that I just don’t understand. That I literally don’t understand anything. I’m smart, yet it’s like I can’t do anything that’s simple. Those same people then wonder why I keep to myself and write or play games. They blame me for not being interactive… But how can I? I don’t know how to. I don’t understand what people are saying or what they’re doing, what is expected of me, or how I’m supposed to respond — it’s like they’re speaking a foreign language, behaving in a foreign way and I don’t understand their strange custom Despite the fact I want to learn all about it, they don’t want to teach me. They resent the fact I don’t instinctively know. They just think that I should just know it, and that’s that. As if they would think it were that easy, if they were dumped in the middle of Japan and yelled at for not being completely fluent in the language and sociology of a radically different country.

 

Simplistically speaking, I feel like I’ve gone from having a badly designed and glitchy OS (think MS Windows Vista or 2000…) with lots and lots of basic patch-fixes that basically do the job just about, to having everything wiped from it altogether. A nervous breakdown, acting like a virus, has come in and simply imploded my brain, and essentially wiped everything from it. No backups, nothing. There’s nothing left except a very basic Safe Boot which barely functions. It wasn’t like I was doing all that well before — it was always difficult to manage to just be alive, to live, to pretend to be normal. I hardly managed all that well to begin with, but I struggled by… Just about. But now… Now I’m reduced to nothing. Nothing but tears and loneliness.

 

I have no outside help, and the tiny handful of people close to me are no longer interested. Just angry and resentful. Hateful. Nasty. Impatient. Cruel. As they have always been. I have always been the one on the outside — blamed, sent away, thrown at so-called professionals (the useless gits that they were) to try and “fix” me. Of course they didn’t. They just labelled me and gave me medication in the hope that I would go away. Only it’s 20-odd years later and here I still am — only worse. Still self-harming, suicidal, and amazed I’m still here. On willpower alone, because I sure as hell am not getting any professional help. I’m sure the waiting lists only exist to try and see how many survive long enough to get the help they require… To see how many throw themselves off bridges in desolate desperation to escape the horrific hell of their existence…

 

I say existence because this is not living. It is not living to be frightened of everything, to be confused and overwhelmed by the simplest things, to have a complete breakdown by the smallest things that completely terrify you. It is not living to have severe depression, crippling agoraphobia, constant terror, social phobia, awful chronic pain, people who are supposed to be your family being resentful and hateful to you, people who were supposed to be your friend vanishing because they don’t understand. It is a hell that was never supposed to be on earth. One I want to stop, and one I’m getting weaker and weaker to the power of making it stop. I’m not sure how long I will have the ability to say no to the lure of the amassed pills that I have to deal with my incessant pain. I don’t want to… but how long can someone live like this without hope?

 

I don’t want to be like this. I want to get back all that information I lost. Like having to re-code all that data again… Not that it was much good in the first place. It was a basic, ill-written and glitchy set of patch-fixes on a crappy system. It’s probably best I pretty much have to start from scratch, but no one wants to help. I need the correct data, and they won’t provide it. Instead, they get angry, frustrated, horrible, tell me they hate me and want rid of me — because they don’t understand. They always come back at me with: why don’t you know this already? I can’t deal with all your crazy shit — all your questions, I can’t answer them! Leave me alone before you make me go crazy too — sucking me into your mad world!… Well… Why is it OK for them to be left alone and not me? Why can’t I know what they know, and why won’t anyone explain? Why won’t they tell me and let me be like them? Why should I be left like this, when all I want to do is learn how to be like them and live in this heartless, cold, and confusing world?

 

I need relevant data to be able to process and analyse things — with the relevant data, I can start putting together whatever I need to “code” the correct responses to things. With the right help, I could do this. Using the right information, I would then be able to strategise what the best outcome would be for relevant situations, like I used to. No, this does not come naturally. That’s what I get asked. The answer is simply NO. I wish they would listen, accept, and understand. Throughout my entire life I have worked very hard to try and collate the relevant information to gauge the correct responses for given situations… It’s been a difficult and exhausting task, filled with immense fear and anxiety — especially since I rarely get the output right, because I’ve never really had the correct data. I have tried to emulate the best I could, but any gamer knows that an emulator is always a poor substitute for the real thing. It just doesn’t work as well, and is likely to fail and disappoint. Just like I always did.

 

The cold, hard fact is that I do not, and have never understood the world in any other way. Until I understand things intellectually, I essentially return an error code or a null result, which is not helpful, and it’s scary when you don’t know anything. Imagine waking from a coma with amnesia in a country you have never been in, and with everyone yelling at you for not knowing anything, for being stupid and pathetic and asking questions because you just don’t know — you don’t know where to go, how to get there, how to behave, who to talk to, how to speak to people, how to interact or deal with things, how to understand their answers or what they mean… If you close your eyes and really imagine that for a moment… Now you have a good idea how how freaked out, terrified, overwhelmed, and confused I feel. Except I feel that I’m not in the wrong country — more like I’m on the wrong planet. I don’t understand people, and they don’t understand me. And no one wants to help translate or navigate this strange world, either. So I’m on my own — and slowly, it’s killing me.

 

I am severely depressed, frightened, need help… but all I’m getting is the backlash from people  I thought cared about me, who just say I’m crazy and yell at me a lot. Resent me. Hate me. They want me to somehow magically understand everything on their terms, and give me nothing in return. What about my terms? How come I do not get any say in this? Why am I the one jumping through everyone else’s hoops? They don’t want to understand me or help me. In fact, they don’t want me to be me at all. They just want me “fixed”, as if I’m some kind of problem. My whole life, it’s been made abundantly clear to me that it’s not OK to be me, and then they wonder why I just keep to myself and don’t want to have anything to do with anyone else.

 

The chaos of it all makes the screaming in my head never stop… Like white noise, static, or maybe a huge crowded room filled with the loud hum of talking people— it’s just noise, like screaming, screeching, random chaos that makes me melt-down completely into a complete wreck, begging for the chaos and screaming to stop. Normal noises seem echoing, piercing, echoing through my head, through the chaotic noise, making it worse. I even seem to hallucinate awful smells… It’s like my brain has completely lost all ability to process everything. A CPU meltdown with little processing power left, let alone parallel processing. I can’t even do something, any activity, and talk at the same time — to be honest, talking at all is difficult… it’s like all the words have gone from my brain (although when I’m writing I have no such difficulty).

 

I’m scared. Confused. Vulnerable. On top of all this I’m also in immense physical pain from something I am unaware of. Whatever it is that is causing it, it is something that is making my existence excruciating. It is this pain that finally forced the breakdown… the virus. It’s one thing trying to juggle this existence, running patch-fixes on everything and essentially holding it all together with own-brand value sticky-tape. It’s another thing when this screaming agony sears into your brain from every cell in your body from your head to your feet, one that never goes away and never gives you a break. Then there is nothing left of your brain after it implodes to deal with whatever ruins of it that is left.

 

I’m on waiting lists. That’s it. No help given to me whatsoever. Just put on waiting lists. I can’t even take helpful pain meds — I can’t have any that are of any use because my system reacts badly to them. Anti-inflammatory painkillers could make me haemorrhage, and strong opiates give me delusions and mild psychosis. Those that I do take give me nightmares, so I can’t take them within at least 4 hours of bedtime, so I can’t sleep either from the pain. The pain keeps me awake until the early hours of the morning, until I’m so exhausted I pass out. Which also can result in horrible nightmares too. So it’s all win-win, really…

 

I am at a loss as to what to do. I’ve lost my job, my life, my sanity, my hope, my friends, my family… I am alone, in pain, scared and confused. Six months this has been going on, and now it’s really getting to me — the hopelessness of it all is leading me down a path I never wanted to travel down again. The one of despair, hopelessness, and despondency is the worst and darkest to travel, and it is one you always walk alone. Loneliness is one of the worst things to feel, and right now I feel the loneliest I’ve felt in a very long time.