The Medicine Merry Go Round

“I think you should stop taking it if it’s not working. Slowly decrease the dose and wean yourself off it”

” I’d like you to increase the dose, to the maximum, over the next few weeks”

The first is my psychiatrist

The second is my neurologist

Talking about the same drug.

Is it working ? . May be. Do I feel better ?. Not exactly but the pain is less sharp.

Has my headache gone ?. No, but it’s less obvious and now feels more like someone pressing hard on my forehead.

“I’m going to prescribe you a new drug, at half dose. Let’s build that up”

New drug. Overwhelming nausea. I mean overwhelming. Constant grittiness. And a dry mouth like I’ve sucked the Sahara dry, mouth.

So many drugs. So many side effects. So many conflicting side effects. Off one, on one, up a dose, down a dose.

Do they work ?. Obviously some work on things I can’t see like my blood sugar or cholesterol. Some are designed to reduce pain.

Then they give you diarrhoea, sweats and nausea in return.

I have no idea.

One says one thing, another says something else.

Take.

Reduce.

Take,

Reduce.

Round and round we go.

Like a Teddy Bear,

One step, two step,

Who’s vomiting over there ? ?.

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I know, I know

I know..

I meant to be more proactive. Then they increased my meds.

Result. Welcome to Fuzzyland, the land where everything is soft, but not in a nice way. Soft as in a sickly sweet, nauseatingly gooey way; a way which envelops you and makes the outside world indistinct and dream like.

You might think that actually sounds okay but when you are Autistic and thrive in being in control, it’s not.

I panic. I tremble. I find myself fighting the fog. I don’t feel how I expect to feel. I feel nothing but a creeping numbness around my mind and a strange tingling, a bit like a field of shimmering energy, surrounding my body.

And that’s not nice.

It just increases the lethargy.

I’m already concerned about my weight increase and this just makes things worse. I just want to eat rubbish and do nothing. But that’s not true either.

I want to go out. The sun is shining. But my partner won’t go out and i gave no real escape, nothing new in this small town. I’m tired of retreading old paths on my own so the thought of activity is semi there, partially hidden by the fog and then overtaken by unhealthy eating. Again.

I’m diabetic. I shouldn’t be doing this but I am. Eating the wrong stuff. All the wrong stuff. Because I don’t have the strength to eat the right stuff. Whatever that is. I don’t know anymore.

So, I’m sorry. Again. For not blogging.

I will. No, I won’t even promise anymore.

I may. No, even that’s too much.

I hope. Better. Hope to write again. Soon. Something soon.

Honestly.

I seem to have become distracted…….by nothing.

Bad me.

Haven’t blogged in ages and yes, entirely my fault. Half a year gone and I feel as though no progress has been made. Anywhere.

Not strictly true that. I’ve been to the pain clinic twice and been lectured on nerves and pain sensors. I’ve also been given homework to do, dims and sims, which, whilst interesting in a “not really but has to be done way”, only shows up all the negatives swamping the positives in my life and helping to make me feel even more useless.

I have an MRI scan this Thursday so the specialist can check there are no secondary psychology issues with my permanent headache. He was pleasant although his nurse was absolutely vile, rude and made me feel very uncomfortable for the duration of our session.

Back with the CMHT. Passed from one organisation to the next, repeating myself over and over, trying to get myself heard. Intensely annoying and frustrating waiting for the right people and the right plan to come together. If it ever will. And yet more medication changes. The promise of potent side effects being quite delightful.

Work sucks. More changes, more uncertainty. Try to stand up for myself and seek logical answers but feel as though I’m the only person who actually cares. Think that’s called fighting a losing battle. Certainly feel even less motivated, if that was possible. Opportunities given to those already in positions of power and denied to the rest of us does not inspire a happy workforce. But only I care. Or so it seems.

No house move. No holiday. No. Just life, moving on, going nowhere.

I seem to have got distracted. Or complacent. Or lazy.

Sorry.

Will try harder. Will try not to leave it so long again.

Honest.

An apology

Sorry.

I know I haven’t blogged in a while but I’ve taken a month away from Twitter.

I’ve just recently, within the last couple of days, returned.

I know my record on blogging wasn’t good before that. Again I apologise. I didn’t know what to write about and too much stuff I did write was the same old thing.

I lost motivation. I lost the will to write and, in fairness, the lack of interaction I got with my writing was such that I wasn’t convinced I was doing anything purposeful by writing.

I know they say it can be cathartic but, at times, it’s more a punishment than a cathartic experience and I found stuff just very tough to write. I’ve said it before, I’m not up on the latest theories about Autism so I don’t do in depth analysis, or, put it another way, the technical stuff. I leave that to the brighter and better qualified.

I have started on my book.

It’s three chapters so far. About me. My life, my observations re Autism and how it shaped me. It’s probably never going to see the light of day but who knows, perhaps it will appear in blog form one day.

So.

I am back.

I will try to write more stuff. I’ll try to get something out weekly from now on. No promises.

I need inspiration. And that’s been in short supply. Lots of behind the scenes stuff.

But I am back.

So let’s see what happens.

Are you Autistic ?. My view.

Like many people both Autistic and Neurotypical, I settled down to watch “Are you Autistic ?” the other evening.

I have waited for the dust to settle before giving my thoughts because I did not wish to rush to judgement and I am aware that the views I am expressing may be at odds with the mainstream community view.

I am not on Twitter at the moment. I have felt detached from the community for a while now and even a cursory glance at tweets shows, regrettably, that I have no place in the community at this time. These are very dark times and it is best that I avoid, for the sake of the little of my sanity that remains, being upset by a group to which I cannot belong.

Still, I digress.

The two Autistic presenters were, I thought, excellent. Good humoured, enthusiastic and informative. It was good to see Autistic presenters although I did wonder if someone diagnosed later in life would have been an interesting contrast.

Anna Richardson, with whom I am familiar, was a disappointment. I asked myself why, when she had an Autistic nephew, she seemed to have failed to read even the most basic stuff about Autism. In a way I found her superfluous and having the whole programme introduced by the young ladies would surely not have harmed ?.

Simon Baron Cohen was, regrettably, less than inspiring. I never get much of a sense of enthusiasm from him and his constant “I see” and “Ah..”, during the diagnostic interviews was, to say the least, irritating.

Irritation was, unfortunately, how I viewed the whole diagnostic process shown in the film. Two individuals who, it would seem, have not previously sought diagnosis are, thanks to the power of television, granted immediate access to, apparently, the leading authority on us, for the purposes of diagnosis. It felt horribly contrived and I felt much sympathy for those who have waited years for a diagnosis but who weren’t handed it on a plate through a television programme.

That is not to criticise the two participants but merely to point out they were very lucky. Or so it appeared.

I found how they disclosed their diagnoses to us was a little disturbing. It had a “Jack in the box” effect of each of them emerging from a door to announce “I’ve had my diagnosis and it’s X”. Wouldn’t it have been better to witness the actual moment and see how SBC gave them the result ?. It made me uncomfortable.

I felt there could have been more in depth explanations of how daily life affects us and more discussion surrounding traits and I think, overall, the programme needed a second half or part 2 to give a deeper insight into Autism.

So that’s it. My views. My opinions.

I shall now return to the darkness.

Down, down, deeper and down.

I feel utterly dejected today.

Utterly miserable.

Utterly bereft.

Utterly lost.

I don’t know what I am doing and every little thing is just causing me pain. Every noise, every movement, every little thing.

I feel agitated, anxious, stressed and so so down.

I feel lost.

I am trying to work but it’s like a bad dream. It’s not quite real. It’s not substantial but more ethereal; a floating, wispy sense of reality, just so vague.

It’s that detachment from my last blog; that feeling of dysfunction.

Everything is irritating. It’s like an itch that I can’t scratch and its driving me mad. I want the world to stop so I can achieve some sense of lucidity; some sense of reality.

And I am so tired.

I know its catch up day. I know that we have a large amount of work to get through; I get that but my god, why does it have to be so hard ?.

I feel so trapped.

I don’t know what I am doing. I am not invested in this. I am going through the motions.

It’s not that I don’t care it’s just that I can’t care.

I can’t get invested here.

There’s no achievement. It’s just one long drawn out ordeal with no end in sight. No matter what I do I feel it’s never quite right or its never enough. There’s no purpose; no fulfilment.

I am so agitated.

I had to walk out, get some air, take a breather.

I was worried I might snap.

I still might.

I need to work but every single day I am here I lose a little bit of myself. Every new job I look at is the same thing as I do now, only worse.

Crap.

I feel such a disappointment. Such a failure.

I want to do so much but my mind, and my body, just let me down.

I know my partner deserves better but I feel helpless to give her what she wants.

She would be better off without me.

Financially certainly.

This is awful. I feel so terrible. So….done.

Why was such a pathetic individual put on this planet ?.

Fuck knows.

I am utterly miserable.

I am 52 next week.

I’d rather not be here at all.

Feeling dysfunctional today

I feel very dysfunctional today.

Very…… disjointed.

Detached. Removed.

I don’t think the weathers helped. It’s not that I mind snow per se but that I mind being hemmed in, being trapped and being unable, even if I don’t want to, to get out.

Being inside has led to a period of reflection and the trouble with reflection is that when I look at myself I’m not happy with what I see.

Leaving Anhedonia to one side I can’t get enthusiastic about anything. I find everything a chore and whenever I get the slightest glimpse of the light at the end of the (very long) tunnel, I find it snatched away immediately.

And that’s frustrating.

Perhaps I doubt myself too much. Perhaps I doubt my ability. But then I doubt that.

Part of me tells me I’m better than this. The bigger part tells me I’m useless. It’s a constant internalised conflict that’s time consuming and mentally draining.

It leaves me feeling very disjointed. Very fractured.

I feel all over the place.

In an ideal world (it isn’t) I would be studying Egyptology and working in the travel industry. It’s really weird, to me, having 40 books on a subject yet not looking at them. And yes there’s another coming for my birthday next week as I attempt to light the spark.

I’ve even been taking part in Ubisoft’s Hieroglyphics Initiative, to trace hieroglyphs into a computer programme, in an effort to get some sort of reaction.

But it all feels so dull.

So numb.

So detached.

I’m doing it but it isn’t me. It doesn’t feel like me, it’s removed, vague, Indistinct and fuzzy.

And that’s the trouble with my life. I don’t feel like I’m living it.

Apart from the brutality of work which is all too real, I find everything else rather a daze. I’m going through the motions and not being involved in things, immersed in things or invested in anything.

And life’s passing me by.

I feel dysfunctional today. I’ve felt like this for a long time.

And I’m so tired of feeling this way.