Tag Archives: Insomnia

25 June 2017


The weather strikes again… It’s June, for crying out loud – surely I deserve a break at some point? The isobars are down to 1011mb today (thus far), and will be falling all the way down to 999mb by Wednesday. What on earth is going on here?

Summer was apparently a few days last week. That might probably be it – but even then, the high isobars were only a couple of days in total. I feel like I’ve been made out of electrified cement.

I didn’t sleep last night (Again). I’m so exhausted. My sleep patterns have been all over the place – so much so I’ve been passing out from exhaustion into (yes, literally) unresponsive unconsciousness for hours. In all honesty, right now, there’s probably a good chance this will happen again – despite trying to stay awake at least just long enough to watch the Queens Club Tennis finals. I missed the entire Quarter Finals because I somehow passed out and didn’t wake up until around 7pm… I’m not missing the end game!

It’s annoying having all this energy to waste that I can’t do anything with anyway, then the Isobars drop so much that you can’t even move at all hardly, making things even worse. I’m going stir crazy, all pent up, climbing the walls, being unable to move let alone expel energy, and now just staying conscious is becoming an issue. I’m actually buzzing inside, and I’m getting ready to start chewing the furniture at this rate.

Because of this, I also find it pretty much impossible now to do anything that involves relaxing and lying back or down. Not just sleep, but reading, writing, even playing games, gets to be impossible, because you just want to go outside and run about – or in my case, wheel really fast around everywhere. That’s if the Isobars agree, that is…It’s so hard to move when you feel made out of cement. I also don’t have an appetite anymore because I’m not burning much of anything off. Imprisonment is not fun.

I have no idea when the chair is coming, but quite frankly it cannot come soon enough. I’m literally being rendered unable to do much of anything because of all of this, and watching TV doesn’t count. At all. I need burn off all this excess energy before I chew through all the furniture and move onto carpets and shoes.


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.



Oh, Stella…

Storm Stella… Thank you for being yet another terrible import from America. For the last week or so you have been driving every nerve and cell in my entire being utterly bananas, and I’m in constant paraesthesia pain – I may as well be attached to Ol’ Sparky for the amount of electric shocks, buzzing tingles and burning, like sunburn, that I am currently having to ensure.

So thanks, ridiculously horrible storm that came from across the sea to cause so much misery.

It was supposed to be a good week this week, and especially today (it’s the release of Mass Effect: Andromeda [game]). But all this has made it impossible to manage to be anything close to even “Meh”. Definitely not “OK”.

It’s beyond trying, being dictated to by not only this condition but also the bloody weather. It’s even messing with my von Willebrand’s – and I have no idea how that happens. I’m already restricted by the damn condition, I really don’t need any more trouble because the atmospheric pressure has gone ga-ga…

IMG_1533I’ve been knocked off my feet and trying very hard to be Que Sera about it all… but this comes on the tail of a stressful couple of weeks, including being ill with flu for about two weeks as well. Then just as I was starting to get better, Stella came… and now I’ve got yet another flare-up from Hell again.

I’m keeping it from getting too much worse with the essential oil blend and Magnesium Oil. But there’s only so much even they can do in this situation. The paraesthesia has gone mad and there seems to be no stopping all those damn horrible symptoms that comes with it.

I was hoping that things would be back to normal by now. I wanted to play Mass Effect: Andromeda on Day One and enjoy it. I wanted to make it to an appointment to help teach someone about basic tech skills tomorrow. But no. It’s not happening. Instead I get self-consciousness, zombie-ness (and I’m not even Walking Dead… more Sitting Down Whilst I Rest Dead…), terrible sensations of being burnt and electrocuted, my hands don’t work properly (typing this is a nightmare for my fingers, but longhand is even worse), and I’m not sure how on earth I’m going to be able to focus on my new game and the lovely Collector’s Edition Guide to go with it. And I’ve been looking forward to this for years.

I am exhausted… so much so it’s more akin to being drugged with drowsy pills, which is really not easy to handle. It often makes my grumpy and without patience. I’m trying, but I don’t know how long it will take before I can’t take it anymore and snap… although I obviously hope I do not. I did not get any sleep last night because this morning there was going to be no one here to help me take my medication, and because of the weather I knew I wasn’t going to manage it alone if I had slept, so I stayed up the entire night to ensure I took it properly and on time. Afterwards, I passed out in my Aspie tent for about 2 hours, then I was up again. I was hoping to play my game. Despite it being there, in front of me, after my father brought up the packages that had come in the post (when he finally returned and I was cat-napping), I had to be disappointed in realising I wasn’t anywhere near up to doing much of everything, as the exhaustion and paraesthesia pain and intense sensations caused by the air pressure once again created an existence I could barely even exist in. Let alone play my new game.

It’s one thing when you’re in control of your health, your recovery or stability of your condition… but when something comes along and can dictate so absolutely what happens to you and inflict so much upon you, it’s hard to process that. It’s impossible to manage to control it. You can’t “get over it” or undo it, and the likelihood is that – after the awful and super-debilitating flare-up is finally done with half-killing you – you are then left to deal with the aftermath and recovery from it.

The constant storms of 2015/16 were so constant, it’s taken me nearly 10 months to start a true recovery (of sorts, relatively speaking) from it… then just when I think it’s safe to go back into the water … always something like this happens. Illness, weather, air pressure… something always seems to turn up. The bottom line it that you feel like you’re simply never in control of your life, condition, or health, and so end up feeling so hopeless and despondent.

It’s also the last thing you need when you’ve got an ASD brain… The random inconsistency, the lack of control, never able to plan anything, and everything constantly in flux even minute to minute, let alone any longer… It’s all a nightmare that never ends, and the only thing possible is learn how to live like that. Somehow find some consistency in non-consistency and non-complacence in how your condition or “triggers” behaves.

The only thing I can think of to cope with all this now (and it’s taken long enough), is to find a bunch of “safe” things that are always consistent despite the inconsistency in everything. More like “If-Then” kind of scenarios, and enough of them to cover as many eventual possibilities as possible – then there’s a constant stream of consistencies to find comfort and familiarity in – frankly, comfort and familiarity I simply used to get just by being in London (at home, my home). Because nothing makes much sense here at all, I need quite a few different “safe” things to have available, regardless of the situation.

Right now, all I want is for these symptoms to go away, my fickle concentration to return, to be at least almost entirely conscious, and to be able to play my game. I have a simple life with simple requirements these days… Something like that shouldn’t be too difficult to ask for – surely?


No Such Thing As A Good Night’s Sleep…

Another long night. Yesterday I was up until around 6am because of an asthma attack. Today, it’s all back to normal and I’m up because of the pain instead. Nothing new, in these days of warmish and wet… soggy… damp.

Dry and cold I can pretty much cope with, but when it’s like this, it’s just another kind of hell to live in. There is no settling it, nothing that can take the pain away. I try, but there comes a time when it’s going too far, and you just can’t take any more – or any more pain killing things – it’s put up and shut up time.

These days, I count going to sleep before 6am a “good night”. 3am and before is positively a miracle.

Anything to aid a good night’s sleep isn’t an option… Just like everything else, really, in times like this.

Going out is not an option. If I force the issue, it exhausts me for days, if not weeks, and I daren’t do too much… which is no more than a short visit to a supermarket or a couple of shops in town – with the help of one or more people. I don’t get to drive, or cook, wash my hair (I’ve been forced to be a huge fan of Batiste), or take a proper shower (so… bed baths… at my age…). Making it to the bathroom on two legs is considered a luxury (crawling is often a used option). I don’t get to see downstairs. I don’t talk to people because it takes up too much energy – literally breathing is, frankly, taking up all my effort on these kinds of days/weeks/months. I don’t even get to play my PC games when I want or need to. I have courses that I should be taking. I have programming projects I wanted to undertake. I had new (IT) languages to learn. New games to play. Books to read. Audibles to listen to. I don’t actually get to do much of anything, really.

This weather takes all of that away. Fibromyalgia takes all that away.

This keeps me a prisoner in my own house. My own room. My own body. What is worse, is that everything that makes me feel better, that cheers me up, is no longer an option… so trying not to give into all the miserable is extremely difficult. Fighting depression is hard enough when your own illness is co-conspiring against you with it… it doesn’t help when all your favourite things are taken away as well.

So… I feel depressed. Despondent, is probably a better word. Rather hopeless and helpless… and pathetic. I alost doubt feeling this exhausted on top of the usually overwhelming fatigue helps. I try not to, but it’s so damned difficult to even try, let alone succeed. It’s hard not to think about what life was life before, or feel entirely disheartened by how everything turned out, how you were descended into your own private hell no one else can ever undertand unless they have the immense misfortune of knowing what having a chronic illness is like. Something you would never wish on even the most evilest of evil in your entire imagination, it’s so horrible.

So instead of good times, I get to writhe in agony, trying not to cry (and not because I have dignity… oh, no, that vanished a while back… but because it hurts to damned much to), whilst all the time gritting my teeth (probably quite literally, too) and just trying to survive every moment it just hurts so damned much

Thus is the life of a #spoonie



The Lure Of The Dark Demon Prince

I can feel that Prince of Demons whispering in my ear again. Threatening to drag me down into the oblivion of Wonderland again… Scattering my thoughts and sending the chill of numbness and fear through my soul.

This time it’s one of my never-ending weaknesses… Food.

For long enough – twenty years now – the horror and fear that food has brought me has been never-ending. Anorexia and Bulimia stalked me throughout my childhood, teen years and young adulthood. In later years I have tried to overcome the mentality it has left, but still it is a difficult and painful task to eat. You wouldn’t think of it to look at me, but that is the truth. Food terrifies me beyond all reason and it’s pure torture to have to voluntarily put it into my mouth and leave it sitting in my stomach.

Imagine, if you will (and this is graphic, but bare with me – and note your immediate reaction to imagining the following), that you are forced to eat, let’s say, human blood, tissue and feces because you’re told your life depends on it – you have to put it in your mouth, chew it up, swallow it, and you cannot throw it up afterwards…

Well… Yes. Exactly… I can imagine how that sounds and feels to even think about. In fact, it’s quite easy for me to do so. That’s the reaction I have to eating normal food – and it’s not pleasant in the least. It’s a reaction I’ve lived with for the most part of my life – and whilst I have spent the last 5 or 6 years managing to override it and talk myself into believing that food is actually good for you, especially if it’s healthy – this awful reaction to food really haunts me still. There is something within my mind that will not allow me to really grasp that this substance is what I am supposed to be putting into my body to feed it and keep it alive. Whatever this is, it makes life in general a living hell whenever it’s time to eat.

I’ve found various ways of coping – the main one being the one thing most people tell you not to do – distraction in the form of watching something on TV (a sitcom, film etc). At work I read the news online, or do work. For the most part, it works to a certain extent. There are still some times where this feeling of repulsion and horror overwhelms me, though.

This happened yesterday and took me completely by surprise – in fact, I was shocked and horrified at feeling it. I’ve struggled and worked hard at it, and I’ve managed for long enough to overcome those feelings, to a point… To have them manifest themselves so vividly was overwhelming and landed me in a heap of emotion to the point where I have withdrawn and become numb. I simply no longer know what to do with these feelings, or know how to cope with them. Once upon a time they were there every second of every minute – more recently they have kept some distance and they are no longer as familiar as they once were. Now as they swept back into my body and my mind, I felt violated – not just by having the food in me (which is what usually happens – I am overwhelmingly repulsed by even the thought of consuming food, generally), but also by the fact this had reared its ugly head again when I thought it was tamed.

It’s brought about other old feelings with it. I’ve immediately become shut-down and numb, and it’s been followed with feelings of being overwhelmed by everything, and mild panic attacks. In a nutshell, I feel quite depressed (and not in that pathetic “I’ve got the blues” way – it’s the “I want to hide in the oven and never come out – and put it on while you’re at it” kind of way). It’s as if it’s triggered that in me as a chain-reaction – a deeply-ingrained reaction of self-hatred from the past. I am rendered exhausted, the chattering in my brain is now incessant again, sleep is nothing but a pipe-dream when it actually comes down to dropping off, and I feel like absolutely nothing is OK in any way or sense of the word.

The thing was… I was really starting to feel quite good for a moment there – I’d had a range of really enlightening moments that made my burden feel much lighter. Now it feels like not only has it been given back to me, but some extra rocks have been added in for good measure. Sometimes when it comes to that adage “One Step Forwards, Two Steps Back”, I feel my experience is “One Step Forward, Fall Down A Cliff… Then have to climb all the way back to where you started before you can even think about going another step forward again”. Funnily enough I’m then too exhausted to go any further for a long time…

To be honest, I don’t even know where to start to get back on an even keel right now. I’m not so bad as I will actually hide under the duvet for weeks on end without looking at anyone. But I do feel scared, intimidated, and incredibly withdrawn into myself now – from that very second of those feeling appearing. These incredible emotions are my own incessant, abusive bully that I can’t seem to be rid of, and it’s now taunting me again. I have managed to defy it by cooking and eating the food I felt terrified of yesterday, and by eating my meals today – even cooking a really good dinner tonight (and rather enjoying it, thankfully). However, I do not know how to make these feelings of fear and intimidation go away. I can barely even focus on playing my favourite game (usually always good for feeling better about almost anything).

The lure of the Demon has brought me back towards its whispers, and I am finding it rather hard not to listen. It’s the best manipulator I have ever met.

Lost In Wonderland…

I feel like Alice falling into the rabbit hole… Falling with me into the chaotic darkness are characters from (my) books (that I’ve written/ am writing), loud music, voices saying the most awful things, memories and echoes of things that are long past yet haunt me still – the cacophony is a familiar but overwhelming soundtrack to my descent into my very own Wonderland of nightmares.

Then to live in it becomes the norm, and before I know it, six months are passed and I have no idea what has happened except that I did virtually nothing but live in a numb and frightened nightmare the entire time.

It’s always a familiar path to that rabbit hole, and sometimes I can even stop myself falling in at all. Most times these days I get stuck in “Wonderland” for a while, looking back up the rabbit hole, wondering how I fell down it and trying to work out how to get back out again. At least it doesn’t happen that often anymore, though. Not only that, but there is the added helpfulness that life down the rabbit hole doesn’t last very long, and is no longer as extreme, intense, or horrific as it once was.

But falling down into into the nightmare of “Wonderland” is always a frightening feeling, even if it’s now probably the most familiar thing in my life – the one thing I seem to be able to count on… I try and reassure and remind myself now that it’s never going to be as bad as it once was to experience, and I no longer end up cocooned in a catatonic trance of numb misery and paranoid terror for months, or years, on end. I even remind myself that I’m now flying solo and coping with life – and the mild “relapses” – relatively well without medication (which always proceeded to make me feel worse, as my physical reaction to side-effects were never positive). But it doesn’t make it less frightening because that is my experience of it, and what I fear is that it will happen in just the same way again. It hasn’t for years, but it just might.

So now I fall down the dark hole again. The cacophony of noises is (quite literally) too loud in my head to hear life outside of it. Sometimes I really am not aware that life actually is going on outside of it, and above me as I wonder about, lost in Wonderland. My mind is not really any longer my own, and I struggle to understand what is going on around me, as I genuinely cannot any longer comprehend what “reality” as everyone else sees it (and how I usually do, when I’m not busy doing this). Everything looks as though it may very well be in a dream, looking slightly distorted, colours dulled, and not quite conscious of what is going on at any particular moment. And at this point, sleep generally ends up being barely more than a pipe-dream, which obviously does nothing to help the situation at all.

In times like these,  I get more than irritated by people complaining of being “depressed”, or even using it as an excuse to hide from work and claim welfare for when they know nothing about the real suffering that goes on behind the mediocre words. As if it’s simply “the blues”, and not a matter of being depleted in required brain chemicals for synapses to function at the required level of “OK”, resulting in living in what feels like a horrific nightmare every second that you simply cannot wake up from. I get irritated that those who haven’t been down their own version of the rabbit hole, who throw it around like it means nothing – if they knew what it was like to live here, they would all shut up very, very quickly, and run away from it just as fast.

I wish I could…


Living With The Enemy

Not been doing much writing of late… I’ve barely just been mindlessly going back and forth on the manuscript without much of an idea of what I’m doing. I wish it was because I have started an intensive IT course for SQL, but even that is suffering.


After all these years I am definitely tired of being “symptomatic”, but right now I can just about claim to be “coping” … And by “coping” I generally mean that I haven’t as yet curled up into a catatonic ball for six months. I feel a bit “Can’t Live If Living Is Without You” when it comes to my (… “condition”?… “illness?”) depression – I’ve had it nearly all of my life and I don’t think that I would know what to do without it hovering there in the background. But that is where I would prefer it to stay. Whenever it raises its ugly little head in my life, everything tends to descend into chaos, leaving me a quivering wreck that then has to pick up whatever pieces that are left at the end of it.


Being out of work (it’s like no matter how hard I’ve tried, I get nowhere…) and stuck at home, it’s not the best situation to be in – it’s prime fertilisation for a relapse. Add to that horribly painful backache and sciatica (ironically brought on by sitting for long ours in the classroom every week for SQL course to get me back into work), making walking – and just about anything – difficult and painful as hell, and all that’s left is a rather miserable Lel… Even my “Angel Walk” – walking from home to Angel Islington – that I try to do most days ends up compromised when it flares up, and there goes the one thing that makes me feel a little better.


I’m tired of being tired… No, exhausted… I’m tired of being up till 4am every night – despite being so damn knackered, I can’t concentrate on anything, I feel rubbish enough to not even know what “self-belief” even is in theory, and I’m so run down with almost no appetite and no particular inclination to consume anything but coffee, as it’s the only thing that keeps me vaguely functioning. I’m also ending up having to take painkillers rather regularly again thanks to my back, and that’s the last thing I need to be reliant on when I’m feeling not OK with things. I have enough of a checkered past with codeine – the last thing I need is for it to raise its ugly head on top of everything else.


I also hate being hopelessly over-emotional, prone to unbelievable levels of hypersensitivity and emotionally-driven panic attacks, and I tend to stupidly believe that the pills can help can calm them down because they make me think I feel better. You’d think that after 20 years of this I’d have worked out that it does nothing but cause trouble, not make things better…


I really want to get back to “normal” (normal for me)… To be more than just about functioning, just about coping. I want to be able to walk out the house and not feel scared (agoraphobia can be really annoying), talk to people without feeling like they’re being really demeaning towards me (it’s just paranoia – they’re generally not), talk to agencies and go to interviews and sound coherent and confident whilst doing so. It’s always nice when these things happen, and I can do them all without having a panic attack or descending into paranoid tears.


Actually, what I would really like is to get my mind back so I can concentrate on things again, get obsessed/ passionate (depends who you ask…) about the things I love, get back to writing, actually enjoy my course and be able to do concentrate on it and actually understand it, actually want to play games again… I miss caring about my characters (in my novels, Skyrim, Fable), and I’m annoyed I’m not making the best out of my course that cost a lot of money. Not being able to take in the lectures and trying to read my notes and textbook with the words never being retained.


The demon needs to go back in the box… A bit tired of playing games with it though.





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