On the edge of the precipice 

I feel like I’m falling. 

I feel like I’ve tumbled off the edge and gone into freefall. 

I’ve lost control of my body, lost control of my emotional state and my life is like a galloping horse racing into the distance. 

I feel left behind. I’m off balance, jumbled, messed up and distressed. 

So messed up. 

Every sound hurts. It’s like nails being savagely beaten into my brain. Pain flows through me be if the car whooshing by, the screeching birds or the television. Every sound reverberates through my body causing me physical pain. 

My joints ache. Fibromyalgia flare ups are now routine, daily, hourly. My joints are on fire. They protest at every movement and even something so simple as getting out of a chair is greeted by an electric shock of pain through my knees and ankles. 

I’m not sleeping. Every sound outside is amplified. Dogs barking, doors opening, the cacophony of the drunk lady across the road embroiled in a row with her partner at 2.00AM, her swearing and screeching echoing in the warm stillness. 

I toss and turn. Every movement sending fresh pain coursing through my body. Comfort like a distant memory. 

I take my meds. For all the good they will do me. None. 

So much blood. 

I self harmed yesterday. I sat on the stairs and gouged my wrist. Gouged it out, scraped it till it was deep and bloody. It ran in thick rivulets down my hand. 

Pain reminds me I’m alive. 

So much stress. So much anxiety. Trapped in indecision. Fearful. Overwhelmed. 

Yes thats the word. Overwhelmed by life and so tired of it all. Tired of getting nowhere, tired of failing, tired of being a disappointment. To myself. 

I can’t get it right. Get life right. None of it. I’m so fucking tired. I rarely swear but now you know. So fucking tired. I’ve had enough. 

I want out. I want to be free of pain. I want it all to end. 

On the edge of a precipice. 

But I’m already falling. 

Another week of abuse (Is being nice impossible ?) 

I self harmed again this week. 

I’d exercised a lot of self control recently but events conspired against me and the pressure got to me at last. 

I’d gritted teeth and pushed on through the pain barrier becoming more and more conscious of the constant pain assailing me in my joints, the lack of good quality sleep and the suffocating exhaustion. 

But everyone has their breaking point. 

I was on a forum trying, as I often do, to see both sides of an argument and ask for reasoned, coherent discussions partly so that I could actually follow what was being said and partly because the abuse being hurled at each other by individuals was sapping my energy. 

I shouldn’t have bothered. 

It was a forlorn hope. 

The abuse started, as it usually does, with comments about my Mother. Sensitive topic that considering she committed suicide and I take comments about her very personally. I won’t detail those comments here but they referred to incest in a deeply unpleasant manner. 

When the posters had tired of that they aimed their sights on me. I was brain damaged, retarded, my brain was deformed, my mother was the cause of my deformed brain…

There were other comments about my prowess, or lack of, in other areas of my life. Those were quite mild by comparison. 

So I reported a few individuals to the moderators who, I know from past experience, will just ignore the reports but it’s the only “power’ available and I tried, as I usually do, to respond in a decent, non threatening, non swearing way. I was polite. I tried to be “nice”. 

Needn’t have bothered. 

If one stopped then another started. My posts were deliberately misread. People chose to read between the lines and draw all sorts of strange things from them. 

Apparently I was getting “roasted” (I have no idea what that means but take it to be something not to my benefit ?) and that, and other words were used with such relish and delight I wondered, seriously, how people could be so nasty to someone they’d never met and who hadn’t been nasty or abusive to them ?. 

Again, although admittedly I should know by now, I was stunned at the depths of nastiness people will sink to when they are asked to be reasonable. They seem to take it as an affront. They scream abuse at me almost as if I’m denying them something or I’ve been beating them. Of course any attempt by me to ask them to stop or explain why they’re doing it is met with further hostility. They seem incapable of simply disagreeing or answering in a rational manner. 

I really wanted to understand people’s issues. I wanted to put things in perspective. I wanted to see through the ranting and swearing and abuse to understand the arguments. I wanted to see both sides and be able to see where I stood. 

But it simply drove me to harm myself. 

Sticks and stones may break my bones but words will never hurt me. A fine wish. 

But I was hurt. 

I really try to be nice. I do. 

But I think it’s impossible. 

Twitters Terrible Toxic Tumult! 

I’ve been off Twitter for a while and just posted my blogs but yesterday, in a terrible mistake, I read some tweets on my timeline and was immediately reminded of why it’s not safe to go back. 

I seemed to have landed in the middle of a torrent of abuse aimed at white males (me) who are, apparently, all misogynistic and who spend their days making unwanted advances to women. Yes, that’s right all white men.

I was reminded of being called a misogynistic white male c**t a few months ago for the crime of disagreeing with someone over something so trivial that it barely deserves mentioning and here I was again watching tweets and retweets fly by. 

And then I noticed that someone I trust, someone I thought I could trust, was busily retweeting this male hate with gleeful abandon. 

So I presume they think that I too am a misogynistic male who makes unwanted advances on women! 

Disappointed is too small a word. 

Yes I’m a white male, yes I understand that I enjoy white male privilege but no, I am not a misogynist and no, I don’t make unwelcome advances towards women. 

1. I work almost exclusively with women. On my section there are four ladies and me. My boss is a woman. My bosses boss is a woman. Apparently I’m extremely popular because of my helpful attitude and get it done approach. 

2. I don’t think my partner would appreciate me making approaches towards other women. She’s been hurt enough thank you and I’m not the cheating type. 

3. If I go out to socialise then my partner comes with me. We go out with two ladies from work. That’s three women and me. I prefer women over men. I’m proud of my partner and like having her close by. 

4. I barely know how to approach a woman let alone in an unwelcome manner. I’m Autistic. I bumble about, I’m not sure what I’m doing, I’m awkward and dating was never a strong suit. If that comes across as being an unwelcome advance then I sincerely apologise but yeah, I’m not a natural at small talk or chatting anyone up. You can ask my partner as I don’t think it was my charm or dazzling wit that attracted me to her, rather a generous spirit and gentle, caring nature. 

5. If you are talking about a male using sexually explicit language then telling him to “F**k off you c**t” does not give you the moral high ground. Two of those words could be termed sexually explicit and instead of blocking (although perhaps you did that) you’ve just entered into a war of words and are maintaining an undesirable relationship. 

I feel really upset about this. I feel personally attacked and, due to the retweets, unsupported, demonised even, by someone I though I could trust. 

I know there are bad people out there. I know there are misogynistic men, male chauvinists and women haters out there. I also know there are women who hate men (personally encountered that) but that is life. Yes I would like us all to get along, be friends, accept and celebrate our similarities and our differences but it won’t happen anytime soon and it won’t happen if people wildly generalise about a gender, race, creed, religion, belief system without think no it through first of all. 

Twitter can be so toxic. 

Stop it. 

Please just stop it! 

The curse of Fibro Fog

Ever heard of it ?. 

Until I was diagnosed with fibromyalgia and read up about it I wasn’t really aware of this frustrating side effect. It crept up on me unawares and now it’s here to stay it’s become an unwanted guest. 

It’s in my brain and I wouldn’t mind so much if it paid rent for the privilege of occupying such a valuable space but it doesn’t and it’s a really lousy tenant!. 

Much is made of the fact that those of us on the Autistic spectrum have quite the talent when it comes to memorising stuff. We can reel off facts and figures about our special interests and never seem to run out of things to tell you about them. 

If only that were the case now. 

Work isn’t so bad. There I’m “in the zone” so to speak, so much of what I’m forced to recall comes naturally and, because it’s something I’m doing on four consecutive days, I get the benefit of repetition so that more of what I’m saying is sticking in my head. But even so I get moments where I hit a barrier and the fog descends. That’s so annoying!. 

Coupled with Anhedonia, Dysthymia and Alexithymia it all makes for an unhappy brain and, of course, the more you try, the worse it gets. 

I can feel myself straining to remember things and, another frustration, is that I can’t recall yesterday’s television or what I read in the paper but I can recall Ahkheperkare, Ahkheperenre, Menkhepure, Menkheperure, the Prenomen of Pharaohs Tuthmosis 1-4  or Usermaatre-Setepenre, the Prenomen of Ramesses 2nd, which don’t often crop up in polite conversation. It’s no good remembering things that aren’t of much use to me is it ?. 

Brain fog is hideous because you find yourself questioning everything. Did you do that ?. Did you say that ?. Is that true ?. Have you made a mistake ?. It’s really quite scary at times because you feel that you’ve lost control. Frightening images of Dementia or Alzheimer’s spring to mind and even scoring 100% in a memory test session run by the Alzheimer’s Society, doesn’t quite quell those fears.  

It interferes with your enjoyment of things. Anhedonia has robbed me of virtually all pleasure but that’s harder to get over when your brain is a tool you want to be able to use to study or research….and it’s untrustworthy. 

I would love, really love, to be able to do some studying. To be able to retain information. To be able to recall information. To be able to compartmentalise my brain so that everything was in it’s rightful place and I could trust my internal fling system. 

I’d love to shake off the fog, this lazy, lethargic, painful fog that’s leaving me lacking clarity, distrustful of myself and feel like my life wasn’t just slipping away. Oh, punching yourself in the head really doesn’t help. Tried that. Ouch!. But, seriously, that’s what you feel you need, to slap yourself, shake yourself, somehow raise your brain from its slumbers, to tell it to get a grip. 

Brains eh ?. Who’d have ’em ??. 

When being Autistic means hiding from the world. 

It’s hard isn’t it ?. 

Hard being you. I know it’s hard being me so I’m presuming it’s hard being you. Sorry if it’s not. Okay, not sorry, that’s not the right word more, envious ?. 

I’m so tired of masking. Tired of many things right now. Life. Yeah that’s a big sucky one right now. But let’s not dwell on that, it brings on dark and disturbing thoughts. 

But masking eh ?. Pretend. Being something you aren’t. Acting. 

I hate it. 

Hate it because it’s draining. It tires me out. Wears me out and, well I hate to be picky here, there are no rewards. Zero. Nada. Nil. 

But it gets you through the day I hear you cry. 

Sure it does that. But at what cost ?. 

What cost to me, this sense of normalcy ?. This facade of neurotypical behaviour ?. 

It’s damaging. It leads to thinly veiled criticism of being “mildly” Autistic or, condescendingly “not that bad”. It’s like I’m faking Autism because I’m faking being neurotypical ?. That would, I suppose, at least make me a genuine fake!. FFS!!! (Which stands for For Fakes Sake)..

There are so many times in the day when I want to break free. I want to yell at a colleague for using their chair to wheel around the office (sensory hell), ram a fist through my totally inadequately powered PC at work (useless, unpredictable and prone to spontaneous meltdowns at inopportune times), either open or close doors as the buildings too warm/close/stuffy/smelly (back to sensory issues), change the horrid ringing tone on the phones (did I mention sensory issues ?), call a colleague a stuck up bitch or send a heartfelt email asking one of our “expert” advisors to never darken my work email account again due to the illogicality of their response to the question “Did you use 100% or 90% ?” (Their response being “100% of the 90%” which I took to be 90% but, on further investigation turned out to be 100% of the 100%!” ). 

I want to be me. More me. 

But I can’t. 

Bits emerge. Real bits because I can’t masquerade all the time. Playing pretend is hard work and deeply unsatisfying, at least to me. And, of course, if I show too much of me then there’s the old lose job because you’ve upset everyone and you’re a liability concern. 

But I always feel I’m hiding. 

There’s nowhere I can be genuinely me. Even at home there are dangers. The danger of not being taken seriously (That’s not Autism, that’s just you being a man) or being too rigid and inflexible (You’re the reason we can’t do nice things. You always say no) or the sarcasm (Look, it’s ten o clock. Isn’t it your bedtime ?). 

Hiding is so tiring. 

But what else can I do ? 

I’m a bad person

Recently, increasingly, I’ve been told I’m controlling. 

Perhaps I am. 

I don’t see it that way. I see it more as self protection, a way of protecting my sanity, a way of self control. 

Perhaps I’m wrong. 

It happened again last night. I switched the television off and within three minutes my partner had switched it in again. Not to watch anything in particular but just because she wanted it on. So I asked her why she had put it back on and got shouted at, “You’re so controlling. Always telling me what I can or can’t do!”. Her exact words. 

I fled to the sanctuary of the bedroom and put myself to bed. 

Over a week I watch, perhaps, 10 hours of television. There are a few series I follow and the odd documentary catches my eye. 

Over a week my partner watches daytime television when she comes home from work and probably another three to four hours after I go to bed in the evening. I’d say she watches three times, at least, more than I do. 

But it always seems to be on. 

And when I’ve spent a long day in a hot office surrounded by chatter and the constant brr brr of the phones I find the incessant background noise a real sensory issue, especially when it’s just on for background noise and there’s nothing specific on. It just has to be on.

And what I don’t get is that whilst the television is on, she will be using her iPad to watch videos on YouTube, often with her headphones plugged in!

I don’t get it. There’s a monetary cost as well in electricity and ever spiralling bills. Yes, I accept I play video games for, perhaps, six hours a week, but I’m playing for a specific purpose, I can’t use my iPad whilst playing!. That would kinda defeat the object. 

I feel like I’m a bad person now. 

I have zero pleasure in life. My fibromyalgia keeps flaring up. My sleep is haunted by weird dreams and I wake up stiff and in pain. I have a headache. I’ve no job prospects, can’t shake my brain fog and feel useless and pathetic as it is. I feel ugly and stupid and I don’t make my partner happy. 

I don’t know why I carry on as I contribute zero to society. 

I’m Autistic. I guess that sometimes our requirements for self protection do come across as controlling to others. Our needs impose upon them and our ability to cope is compromised. Perhaps I’m not good at explaining why I find things such as the television so irritating. I’m sure I’ve tried but it always seems to get thrown back at me, “You watch as much as I do. You play video games. You don’t pay the electricity bill” (Actually I contribute 50% of it) 

I just can’t get across how I feel. 

Perhaps I am a bad person. 

Perhaps I am a control freak. 

Perhaps I am just a freak. 

Perhaps it would be better if I wasn’t around any more…

An idyllic setting..yet, beneath the surface..

Yesterday we went for a drive through the glorious local countryside. 

Pretty villages we had never head of, leafy dappled lanes with sunlight mischievously playing in the leaves, streams glittering beneath an azure blue sky, broken only by soft puffy white clouds and the foaming streaks of high up aeroplanes. 

It was a warm day. Not hot, not the baking sun that harshly decimates the landscape but a warm, enveloping heat that wrapped me briefly in cotton wool. 

For a while everything seemed right in the world. 

But such moments are both few and far between and, regrettably, an illusion. 

As I sat there, watching the world go by, studying the impeccable thatched roofs, the neat white washed houses in their studiously maintained gardens and listening to the gentle swirl of the streams that flowed on by, I encountered a deep melancholy. 

Unaccountably I found myself growing despondent. I found an aching sadness growing within me. 

My mind was dredging up the past, bringing unwelcome memories to the fore. 

I remembered days like these. I recalled the long hot days of summers of my youth. Days when I was innocent and free, before my illnesses, before the mental strain became too much, before I’d even heard of Autism or Fibromyalgia, perhaps even harking back to a time when I was happy ?, if I ever was. 

And I regretted my life, regretted what I’d become. 

The missed opportunities, the lost times with people no longer with us, my academic failures, my life failures, hell, my life itself. 

I questioned my very existence, why I was still here, what benefit I was to anyone, how much better off my partner would be if I wasn’t around, what was my purpose ?. 

So much beauty in the world, so much to admire.

It’s not jealousy. I don’t envy other people their lives. I don’t want to be them. I don’t want to be not Autistic. 

It’s regret. 

It’s regretting decisions made or not made. 

It’s also realisation. 

It’s realising that now I no longer have the strength to fight. My energy has been sapped by diabetes, fibromyalgia and the hideous fibromyalgia fog that clouds my brain, Anhedonia and the supreme loss of pleasure in anything and everything, from the food I eat, to the books I read. Two small strokes have reduced my stamina and left my right hand side weaker and unreliable. 

It’s realisation that I’m a failure. That I have nothing to offer. That I can’t provide for the people I care about. 

They say that beauty can be a curse. 

Perhaps it’s true. Everything I saw yesterday, so lovely, so perfect, only served to remind me of my inadequacies as a friend, partner, lover, colleague and human being. 

And I now lack the strength to put it right. 

It really was beautiful yesterday. 

Idyllic. 

On the surface. 

Going round in (vicious) circles 

Mental and physical health are closely linked. Obviously they share the same body but I think that, sometimes, we simply don’t recognise the link between the two. 

We treat them as separate organisms. Each distinct from the other with their own set of symptoms and treatments. 

But in my case I find that each has a deep and profound effect on the other. 

I’m Autistic. I see the world differently. My brain is set up in a different way so I struggle with…well…life. Communication, interaction, involvement with others. The knock on effect of those is that I get very depressed. I have Dysthymia. I have Anhedonia and Alexithymia. I self harm and am permanently stressed and anxious. 

Those “conditions” bring on IBS. I live with a permanent stomach ache, the threat of diarrhoea, a tension headache and neck ache. My mental state initiating a physical reaction. 

I have diabetes. I have fibromyalgia and I’ve had two minor strokes. 

So, knowing that I have those and that I’ve had strokes makes me anxious and stressed. I worry about my health. I worry when I’m stiff and can’t stand up in the mornings, when a couple of hours work leaves me slumped on the sofa. My physical state initiating a mental reaction. 

When you feel constantly run down and you lack the strength to deal with your basic needs it’s hard to put a positive spin on things. When you get no pleasure from anything and everything bores you or feels like a chore it’s had to put a positive spin on things. When you’ve lost sight of all you enjoyed and you’ve been stuck in the cycle of mental and physical pain for so long, it’s hard to put a positive spin on things. 

And that’s the trouble. 

Going round in circles. Desperate to break the cycle. A brain shrouded in fog, that at times can’t recall the names of people known for years or what was on tv yesterday. That feeling of forcing yourself to move, forcing yourself to contribute, when every day there’s no light at the end of the tunnel. 

And when you are tired, physically and mentally, you can’t rely on yourself. You start to doubt what you say because you can’t verify the truth of it. You enter a fugue like state in which you don’t really exist. The world passes around you, it flows like a river about the rock on which you stand midstream but it’s not tangible, it’s not real. You feel as though you can reach out but if you touched its gossamer thin strings they would disintegrate in your hands. 

Physical to mental to physical to mental. On it goes. Round and round the garden like a teddy bear, one step, two step, we are going nowhere…

And that’s where I am. 

Going round in circles. Vicious circles. 

No way out. 

No end in sight. 

Caught up in a circle. 

Viciously. 

Arse-sessments! 

I’m trying to get to the bottom of things (terrible pun intended)! 

So, after my assessment I got a letter detailing what we had talked about. 

Only we hadn’t. 

And what we’d talked about was wrong. As in the detail. Wrong. 

Accompanying the letter. The vague letter with lots of “future ideas” which may (may not) come to pass, there was a workbook! 

Okay. Hold the excitement, hold it right there. 

It had been prepared, constructed even, by “experts”. 

It contained lots of pages for me to write my feelings on. Yes, those feelings I can’t identify. Those feelings I’ve sought help to identify. 

It also contained a diary in which I could write down my daily activities and what I thought of them. 

So…..typical entry reads :- 

Monday 9.00am Work – bored/listless/depressed/anxious. 

And that’s how I always feel so ….do I really need to be reminded ?. How is that helping me ?. 

It’s a book about goal setting. I have to set small achievable goals. 

And that’s hard. 

If I go to work, what goals should I set ?. Be bored after the second call of the day rather than the first ?. Should I get listless by 9.15 instead of 9.10 ?. Can I get depressed after the fifth person who talks to me with their tv blaring in the background rather than the third ?. Should I get anxious before 11.00am or after ?. 

If there is variety in your day to day routine then yes, perhaps there’s some merit in small changes or little steps but the same day after day brings on the same feelings and moods and, being entirely honest, I’m bored, listless, depressed and anxious before the day begins. 

I don’t know what I was expecting from the assessment. More insight perhaps ?. Actually being listened to instead of what seems to be, judging from the letter, being only half heard ?. Proof positive there was light at the end of the tunnel instead of the same old tired workbooks ?. 

I feel more down than before. I feel not taken seriously ?. Not really (really, really) listened to ?. 

Assessment ?. 

More like arse-sessment. 

Half arsed. 

Can’t be arsed ?. 

Assessments, Autism and Damn Fool Questions! 

“Do you have the means to kill your self ?”. 

There it is. Damn fool question. 

I was being assessed for some belated (very) adult Aspergers support and, given a history of self harm and suicide attempts, I was half expecting it. 

Even so…

“Yes”

I sense a frown means I’ve given a troubling answer but….knives in drawer, rope downstairs, the stairs themselves, cupboard full of medication, household cleaning products, a busy road outside….is there anyone who doesn’t “have the means” ? 

“Would you ?” 

“Possibly yes, if I was low enough and saw no way out” 

“Why haven’t you before ?”. 

I hate that. It’s almost accusatory. Why did you fail ?. Why am I having to ask you these questions and fill in these forms ?. Why are you here ?..

“Because the mood passed. Because I hoped tomorrow would be better”. 

I sense they’re the wrong answers but I don’t know what I am supposed to say. I feel tricked and uncomfortable. 

“How often do you think about suicide ?” 

“Every day” 

Alarm bells ring. 

“Why ?” 

Well it’s obvious isn’t it. Mum committed suicide. I think about Mum every day. Hence I link suicide with Mum and therefore it’s a natural process. 

The trouble with these questions is that I can’t prepare. I have no opportunity to see them in advance and I have no control over how my instant answers are interpreted. I’m being tasked with giving spontaneous answers to difficult questions and that makes me uneasy. Some of the questions are so vague that I need them repeating because I have no idea what I’m being asked. 

Then there are questions that ask for answers I can’t possibly give. 

“How do you think X views your behaviours ?” 

“Have people noticed A or B about you ?” 

“Have they noticed changes in your behaviour ?” 

Have you ever thought about asking them ?. 

I have no idea if anything I said was helpful. Whether anything I said was “serious” enough for me to be taken seriously. Whether I met the grade, achieved the score, answered well or properly. 

Damn fool questions. 

I am Autistic, not a mind reader. 

Three months to wait to hear if I’ll get any “help”….

But did I do okay ?. 

I don’t know.