Tag Archives: adult ASD

Being Literally Under The Weather…

More long days of Fibro Flareups again. They really are tiring, and they really get to you. They get me down, but even more so do they really get to me. They hurt and they’re difficult to get through, you can’t do anything, and of course that all mixes in with the stresses of the permenany Hemiplegic Migraine.

In and out of something that borders between unconsciousness and sleep, I’ve been able to accomplish nothing I hoped to today. They’re only basic wishes –  brush hair, shower, play game or read, perhaps go out or watch a TV show (Versailles is the current favourite). However, I instead literally get to do nothing because I’m passing in and out of consciousness, and it’s really not nice at all.

This is, quite frankly, dehumanising, disheartening, frustrating, and upsetting. When you just want to do one or two basic things and you can’t you start feeling really, really, pathetic. And inadequate as a basic human being. My hair is a mess, a shower would help on numerous level – not just the obvious one – and playing my games actually puts my brain to work when nothing else can. It’s pretty terrible when you can’t just do at least one of them.

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The reason for this flareup is the weather. I have discovered personally that if the isobar pressure drops into a low of under 1020mb (which is quite high), then I suffer. 1010mb and under and I may as well be dead. I certainly wish I was, to be honest.

On this day, it sat at 1011mb, but was also thrown at me alongside heavy rain, cold temperatures, high humidity, and high precipitation. All together it teams up into the proverbial perfect storm. And I am trapped right in the middle of it.

It’s been hit with everything I have – Pregabalin, Pukka Ayurvedic teas, Key essential oils, even Courvoisier. All given throughout the day – the parts I’ve been awake, anyway. It’s kept a lid on the worse of the “pain” (which in my case now means extreme paraesthesia, and not “normal” pain, which I had before) – however, not enough to stop me from crashing out the entire day. Until now, of course, at 1:00am. No… Now I get to be wide awake. Yey…

The bad days do not make the bad days better. The good days only serve to make the bad days more frustrating and upsetting. When you see others getting on with the basics, you feel like something between a complete failiure as a person, and so utterly usless you may as well not exist. When it’s hit-or-miss as to whether you can do them too, then it’s just hugely magnified. I find that very difficult to deal with, and feeling non-funcional is one of the worst thing that I can go through and experience.

I’m hoping it’s going to get better – supposedly tomorrow should go up to 1020mb with no rain, so that might offer a little respite. Next week is supposed to be quite warm with high pressure too (although with a Bank Holiday looming, I doubt it will do nothing but give way to the patently required Bank Holiday showers and soggy weather…).

But… it’s days like today that really makes it hit home just how bad things really are, and this is a seriously debilitating condition that I have no control over. This is the psychology I can’t get my head around – accepting that this is the case, that I have no control over it. Yes, there are some things that can be done, and I am doing them… what I know about, anyway. It’s not like I’m getting any guidance here…

I hope one day I’ll be able to… coexist… in peace with it, and I hope that day comes soon, because the upset I get from days like today took their toll a long time ago, so every one since has been adding to a high burden I already carry around – what I call my “ball of wrong” in my tummy. It sounds silly and vague, I know, but it’s the only way I can identify things or emotions in me that this is causing, and there’s a lot of them. It’s like a giant “Miscellanious” cupboard stuffed to the brim with unidentified thoughts, feelings, pain, confusion, and scared, whigh has been accumulating since this has started, and it lives in my tummy. That’s just ASD for you, it seems.

Being as Aspie Girl with all these things going on everywhere certainly isn’t easy…

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Alone Without Precedent

The more I am in this situation, the more it eludes and confounds me. It doesn’t help that it thus far has no definitive name. What really doesn’t help is the psychological aspect.

I checked around the Internet… There seems to be really little on ASD/ Autism/ Asperger Syndrome with neurological or physical chronic illnesses. There seems to be no precedent, nothing out there from other people  who are or have been in a similar situation. There’s one or the other – but not both together.

I feel I am wondering out in the wilderness with no way of knowing which way to go, or where I am even going. There is so little help… Nothing but Waiting Lists, and then some. Lots and lots of them – Neurology, Occupational Therapy, Psychological Services… and then there’s more to come for diagnostics, physiotherapy, treatment, more appointments… A never-ending carousel of waiting. With no one to help in the meantime. Without a clue as to what might be wrong with you or why you’re suddenly like… this.

All I know is that it’s no longer Fibromyalgia. Last time I checked that required pain. Mine is all gone, replaced by horrible other things instead. No longer hyper-sensitive to cold, no longer in that pain I was in, no longer able to feel… well, almost anything. I’ve never hit my “funny bone” before and barely noticed. The dog can walk or bounce on me, chew [gently] on my arm and play with it. I don’t notice bumping into things, or people accidentally knocking into me, or things falling on me, or even touching my own arm or leg. I’ve been told there’s a terrible rash on my back and neck as a response to using oils – and I would be none the wiser if they hadn’t told me. I can’t feel it and it doesn’t even bother me. But when I touch it, it feels pretty rotten, I must admit…

img_0886Today my fingers went really numb… like someone had tied super-tight string at the bottom of each one; that feeling of the blood flow being cut off – and yet there was nothing on my hands at all. Not even gloves. I have also had a very hard time with extreme Fatigue (and I do presume I have a cold, to be honest), argued with gathering a Shard on Dragon Age: Inquisition, and my back and legs (especially my legs) have been quite “buzzing” and/or tingling (varying through the day). This morning I couldn’t even move or feel my own self to even try.

Right now I have to manage on the – rather genius and amazing – essential oil recipes for neuropathy and then for fatigue/brain focus, Devil’s Claw, Magnesium Oil (amazing), Neurozan vitamins, and coffee. Occasionally there’s minimal Co-Codramol (8mg/500mg) – almost always when I have a cold or infection – and Boots Botanics Ylang Ylang & Manderin “Aromatic Rollerball”. That’s on top of maxed-out Pregabalin pills. But without a definitive diagnosis, we’re all just pissing in the wind, guessing and hoping for the best.

I feel alone. Lonely. Because it really does seem I’m all by myself with this. Yes, peopleimg_9891 have neuropathic chronic illnesses, and yes, people have ASD. I am yet to find someone else out there who has experienced this and at least attempted to navigate this.

With the NHS in turmoil, and Social Care drastically underfunded, I’ve pretty much relegated myself to the Raggydoll pile. I just now wish to be the best I can be, especially psychologically. It’s a big ask, but it’s all I can focus on – and the only thing I can control now. There is just nothing left in my life I have any control over, and I have no idea. I am in the middle of it and I don’t understand any of this – so it’s hardly like you can expect anyone else to… But I do wish that at least I did. And this new numbness twist? That just hurts my head.

I am just lost, and I do not like that at all.


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