The Tale of the Blue Arsed Fly

They’re coming over! 

When ? 

Half an hour or so. 

What! But, but we’re going out ?.

Phone

Hi love can you come over at one ?. It’s just that we have to nip out. 

Yes, we will be there at one. 

Nipping out. 

Skip. Drop off various heavy items including old mattress. Autistic panic already set in. 

Shop. Collect various snacks. It’s Saturday. It’s hell. It’s Autism overload. It’s the I can’t find anything day and they don’t have what I need panic day. 

Petrol. In and out the car again. Fibromyalgia screaming. 

Gas bottle. Fourth in and out. Can barely lift the bottle. Too tired for this. 

Rush home. 

Bags in. Gas bottle up a flight of stairs. Almost fall down them. 

Can you hoover ?. Done. 

Can you wash up ?. Done. 

Can you tidy up ?. Done. Falls over coffee table with tiredness. 

Body in agony, joints searing in pain, headache, anxiety, all this from a spontaneous we are coming over. 

Have rushed about like a blue arsed fly…..

And…

Ten past two…

Not a sign of them!. 

Great!! (Sarcasm) 

A dangerous time of year

This is a dangerous time of year for me. 

Unfortunately, Halloween, Bonfire night and Christmas are three loathsome “events” that bring a shudder to my spine. 

Halloween I’ve always looked on as an American tradition. I just don’t see the point in it and people knocking unexpectedly on your door is not exactly Autism friendly!. Bonfire night, an old tradition, is a mixture of frightened pets, crowds (the inevitable firework display) and loud bangs, again not Autism friendly. Oh, and have you noticed how it rains on the night of the firework display so you’re damp, miserable and having your ears assaulted!.

Christmas is my nightmare. 

What to buy, how much to spend, will it be liked, will I like what I’m given, do I have to show gratitude or pleasure, where will we be on Christmas Day, are we staying home or going north ?. These, and more, cause me nothing but anxiety in the build up to, and on, the big day. 

What with the clocks changing as well when the end of British summertime is heralded (hah!) and the effect that has on my body clock and the inevitable winter blues that assail me and drive me into deeper depression, you can probably tell that I already long for the first buds of spring and those first welcome rays of new year sunshine. 

Unfortunately I am alone in my views on these events. My partner loves all three and we are to be surrounded by grandchildren for at least the first two. 

Yes I appreciate these events are for children. Although that said, none were high on my enjoyment meter as a child. The loud bangs of fireworks have ever been painful to these ears. I suppose I enjoyed Christmas more when I was a child and could ask for what I wanted and avoid any surprises but these days I have no idea what I want or need so any present brings with it unwelcome pressure to “like it”. 

My partner is easy to buy for. However, as she wishes to give in return I find myself asking for things I neither want nor need, just to give her something to to give me on the day. 

I don’t think that the pressure we feel under is appreciated. I think it’s just the way that we are expected to conform to a neurotypical standard of enjoyment surrounding events such as these and join in. 

And that is upsetting. To be forced into a place where it is dangerous for my mental health is something I wish to avoid but it is even harder when you’re in a relationship with a partner who is neurotypical and loves these events. 

Its a dangerous time of year. 

I just want to get through it. 

Self care : Failing myself

You’d think it would be easy wouldn’t you ?. A grown man taking care of himself. 

But its not. 

I’ve come away from the doctors feeling very down. Down with myself. 

Because I’m useless. 

No, I don’t mean that, not in the “ I can’t do anything right “ sense but in the sense that my ability to look after myself is severely impaired. 

It’s not because I’m lazy or I can’t be bothered but more due to forgetfulness and a general lack of respect for myself; a lack of self esteem, self worth and yes, honestly, being too tired to think straight. 

I’ve not been taking my medication. Not properly. Not regularly. Not enough. My diabetes is much worse and my blood sugars now giving cause for concern. It’s a case of change or something bad might happen. Something life altering. 

I need to change my diet. I need to change everything. 

My doctor knows it’s hard. He appreciates that my Fibromyalgia is a major setback and that because I lack the energy to exercise the risks are greater. It’s a vicious circle. I need to exercise to lose weight and eat healthily to keep my blood sugar under control but I have very little stamina and I eat the wrong food because I am depressed about my physical failings. 

And so it goes round and round. 

I’m awful at self care. I think so little of myself and I let things slide. 

By now you’d think I’d have learnt my lesson. 

I’m failing myself. 

Damn. 

Nothing to say

I’ve stopped tweeting since very early the other morning. 

I’ve stopped because it’s not actually making me feel either more involved in the “community” again (and I noted we’ve been fighting again…) and because, as the aforementioned fighting actually demonstrates, nobody really listens!.

I’ve noted several newbies come and go. Of course the reasons for their disappearance may be due to circumstances beyond their control or any number of factors but it would be a terrible thing if they were put off by the ridiculous infighting. 

Honestly, what’s being argued about goes waaaaaaay over my head. And I’m quite tall so it’s right up there in the stratosphere. 

I’ve read some of the threads and, in my opinion, people need to grow up a bit. There’s a “ he said, she said” blame game going on, too much tone policing and too much misinterpretation of comments that has left me shaking my head at the intelligence of some of the participants. 

People are falling out over nothing. Because they choose to fall out. 

I can’t be bothered with it. Again. 

I think we should be honest. So I will be. Yes I’ve made judgmental remarks, yes I’ve been hypocritical, yes I’ve thought bad things about people in any number of ways. 

Because I’m human. Because I have faults. 

Autism doesn’t give me better morals. It doesn’t make me a better person than you. It’s a different way of seeing the world, not the only way or the right way. 

I screw up. I do it a lot. It’s called fallibility. 

But here we go again. 

We are Autistic and that makes us experts in Autism!. 

No. 

It might make you well informed about your own but don’t seek to presume you know mine. 

So..

I’ve given up. I just can’t face yet another struggle in a community that doesn’t listen to itself let alone anyone outside it (who is instantly accused of ableism, allism, or any other “ism” that’s currently trending!) who dares to comment or ask a question. 

I’ve said my piece. I’ve said enough. 

For now, I’m saying nothing. 

The “Joys”of Autistic shopping.

Theres a myth that men don’t enjoy shopping. 

I say it’s a myth because I really think it depends what you’re shopping for. Or if you are shopping for yourself. 

But…

It’s not enjoyable watching your other half take armloads of clothes into the changing room and emerge every five minutes with a “ Well ?, what do you think ?”, only to respond with a forceful “Really ?” when you tell them they look fine, or great, or gorgeous. 

Its not enjoyable when they prevaricate over every card for every Christmas, birthday and anniversary and change their minds after each selection. 

And it’s certainly not enjoyable when you get used to the layout of a store so you know where everything is …..and then you go in the next week and it’s all changed. 

I understand sales; I understand the concept of seasonal changes in style but I don’t understand (and here I am referring to you Marks & Spencer!) this constant obsession with putting up high “walls” and moving displays so that every visit becomes some sort of “Escape from the Maze” adventure!. 

I absolutely hate it. It’s not Autism friendly. It’s confusing, chaotic and, when your partner vanishes into the sea of clothing and movable walls so you can’t find her, it brings on meltdowns!!!!. 

M&S is one of my partners favourite haunts so it’s a regular stop off but, in recent times, it’s become more and more difficult to spend the amount of time in there that she would like to. It’s become a confusing mass of jumbled colours, mostly nightmarish, crammed in so tightly that the store is not only an ever changing mess but a claustrophobic one as well. 

People fight through the narrow clothes avenues, you get jostled and barged, clothes fall to the floor as they spring off the overloaded displays like lemmings jumping off a cliff edge. Nobody picks them up so they are trampled underfoot. Staff stand about wTching with idle fascination as the heaving mass of humanity thrust their way through the latest Autumnal fashions!.

For someone Autistic it’s now a deeply painful experience on every sensory level. The lightings harsh, the store is cramped, the staff are idle and unhelpful and when you think you know exactly where to find that pair of jeans, you know, the ones that fit and feel right, you move them and hide them somewhere between dressing gowns and exotic house plants!. 

It’s painful when you know you can be in and out in ten minutes maximum yet you spend thirty panicky minutes searching desperately for what was right here! last week!!. 

It’s not hard. 

You want to move things ?. Okay, give us a map, signpost where things are, reduce the height of the movable walls so we can actually see where things are. Since almost everything seems to end up in a sale (or several) why not reduce the amount of stuff in the store to begin with ?. I mean, you know what doesn’t sell, right ?. Stop making it so cramped. 

Oh, and please do something about the perfumes ?. Sure some smell quite nice but too many people seem to use a whole tester bottle and walking around or through the miasma of conflicting odours can be vomit inducing!.

There’s so much talk about Autism these days but so few companies or organisations seem to have the most basic understanding of how they could help us and make everyday experiences more palatable. 

The joys of Autistic shopping…

No, not really..

Calm reflection

I’ve not been well this week. 

I left work early on a Monday simply overwhelmed both mentally and physically. Too much noise, too much activity, too much…..everything. 

I felt a sensation of panic. I was trapped, hemmed in; everything felt claustrophobic. 

My chest was like a huge bruise aching and throbbing, my stomach was on fire, I had a headache, was dizzy and huge waves of nausea kept crashing into me pushing me further off balance. 

So I came home. 

I need an endoscopy. Never had one before but if it helps then let it happen. I’ve noticed, as I’ve spent the last two days resting, how much things have eased. 

Sure my chest is still sore but it’s not as sore. Sure my stomach still hurts and reacts badly no matter what I eat but it’s not quite as bad as before. My fibromyalgia is still a constant source of concern and even ten minutes physical activity wears me out but the underlying ache isn’t quite as bad as it was before. 

I’ve done nothing. I’ve read a bit, watched some tv, played video games (a useful stress buster) and walked slowly to the local shop to get milk. My partners been at work so the place has been quiet and calm and I’ve just been able to chill out a little bit. 

On reflection it’s what I’ve needed. Here we are ten months into the year and I’ve yet to take a days leave. I’m worn out and haven’t looked after myself at all well. I’ve allowed myself to be overwhelmed. I am, always have been, my own worst enemy. 

The very thought of work makes my symptoms increase again. The knowledge that the stress will, all too soon, return. I think! No, I know, that work is a major factor in my condition. It affects me physically and mentally in ways I have no control over. It is a living nightmare. 

But I’m tired. I think that’s it, in a nutshell. I do too much and then have nothing left for me. My Anhedonia seems well set in and perhaps that’s because I don’t have enough energy now to fight it. I feel so worn down that I no longer have the strength. 

And that’s a mental thing as well. I’m not alert enough because physically I’m so damaged. Ravaged even by this accursed fibromyalgia and its strength sapping viciousness. 

And it’s so frustrating !.

It’s like an itch you can’t scratch. You know it’s there but you can’t reach it. You can’t scrape it off. 

But it all comes back to me. 

I must look after myself better. I must, must, make time for me and I must use that time. I’ve got to get back my mojo. I’ve got to get something in my life that I can latch onto, something that is tangible and real. I’ve simply got to!!!.

I’ve not been well this week. I’ve been calm and used that time to reflect. 

Now, from somewhere, I need to find the strength to fight back.