Tag Archives: asperger syndrome

A Little Bit Safe

I’m finally back upstairs now… It’s been about 3 months since I was up here.

After a horrific time at the Premier Inn at the Black Cat, I came home determined to overhaul my room to make it more safe, more “mine”. We changed the room around yesterday, so the TV is under the back window, with the bed almost right in front of it, so it’s like a safe hidey-hole. It was a massive effort, and somehow, I managed to build the TV stand (with Dad) myself – which amazed me.

I immediately felt safe – something I hadn’t felt here since I arrived. It’s pretty amazing really.

Today I saw a new doc at the new surgery… and shares my birth-name, which is a pretty rare one, even in Wales. Like me, she’s also sensible, efficient, and knows what she’s doing, and does it the right and proficient way. She even shut me up and cut me off when I was going on, without apology.

She had a few home truths to offer regarding my tummy problems and my eating disorder(s) – namely that erratic eating patterns, starvation, binging, eating at random, all contributes to IBS problems. Which is obviously very, very true… and she gave me some basic antispasmodic meds to try to see if it helps with any bowel spasms that might be causing a lot of the issues,  given that the spasm causes backlog in the bowel, pushing gasses and yukky stuff back up, and causes bloating and pain in and of itself.

Also, because I have such a bad reaction to gluten foods, she’s giving  me a test for Coeliac’s Disease,  to rule it in or out. Oh, well… it’ll hurt to eat a bunch of gluten for it, but it’ll definitely taste nice!

The main reason to really go, though, was for the CFS specialist team referral. Which she did for me. It’s amazing how easy it is to go to this surgery… I’m so sad I didn’t go there first…​

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Weather’s getting worse now – another reason I hastened changing my room, because the tent now blocks cold and draughts coming up from the hallway downstairs. I’m getting constant alerts for Weather Warnings on my phone, mainly for ice, as temperatures continue to plummet. No snow yet, but I wouldn’t be surprised if we had some.

It’s of course wrecking havoc in my Fibro, and (very unfortunately) my temperament. But that has been somewhat tapered with more calm from changing the room up into a safe little den, or Hobbit-hole. I’ve managed t be inspired to do this just in time before being frozen. Now I’m safe, comfortable and toasty-warm  in my room, and I’m actually happy to stay here for the first time.

To top it off today, I also got a new tablet/hybrid: The Lenovo Yoga Book (2-in-1 2017 edition) today. I’m sick to death of Apple (don’t get me started on them now!) and saw this and thought it was pretty cool and more like what I needed, but also more…  modern, techie, innovative and imaginative.

It also runs full Windows 10, has a hybrid pen that has a stylus pen for on-screen drawing and real ink nibs available to write on supplied special paper, which gets transferred into the system via the pressure plate that sits where the physical keyboard usually is. This plate also doubles as a holo-keyboard, known as the Halo Keyboard. It appears as a hepatic holographic or Augmented Reality virtual keyboard on the aforementioned pressure plate, and takes a bit of getting used to, especially as a touch-typist.

My Dad is getting my iPad, and with it being excellent condition, he’s getting a good deal! Instead of buying a new iPad for himself, he’s got me this, which was nearly half price in the Amazon Cyber Monday sale, at £299 (supposed RRP £549). Hopefully this now means everybody wins…

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The Tribunal Dilema

My PIP “mandatory reconsideration” was a few weeks back now. Ever since I’ve struggled with extreme pain, illness and stress. There have been two huge storms. My niece was born prematurely. I’ve been under such enormous stress from all angles, I’ve just broken down. I’m being tested for CFS/ME. My Hemiplegic (and normal) Migraine is acting up. Don’t even get me started on the Paraesthesia. I’m a wreck, and only getting worse.

Thoughts of a subsequent Tribunal took a backseat. This is not a system that helps those desperately ill, exhausted, crippled, mentally drained and disturbed, or have chronic illness of any kind. This is a system only designed for those who are robust enough to endure it. The hypocritical irony would be laughable if it didn’t destroy so many lives.

Thusly… Now I think it’s just not worth it.

I’ve been asked about it and I’ve thought about it, especially having written my part on the Parliament forum about it. However, how can I justify – and better still, how can they justify – putting myself through applying for a Tribunal, going through the immense stress, strain, pain, anguish, and super-hyper anxiety that would go with it? As one person on the forum put it, the entire thing is barbaric.

However, both the PIP woman and the Mandatory Reconsideration knob lied through their teeth when it came to summarising the case they put forward. How do I let them get away with that? How can I stand by and allow them to desecrate what I endure every moment of every god-damned day? How can I let them be so crass, derogatory, hurtful, harmful, and not put their words and myself in front of a Tribunal?

I printed out the “booklet” for writing up the form for applying to the Tribunal. It’s 35 pages long and just huge. How are people like me, and especially worse, supposed to be able to manage to read that and write up their form? It’s not like the DWP or PIP have people available to assist in writing them out for you… Instead you have to go and hope the CAB has an opening for someone to assist you. Or if you’re like me, write the whole thing out for you too, because [hand] writing is so hard. Way too hard. Typing is hard enough.

I return to Spoon Theory. I like Spoon Theory because it makes sense, it’s logical and it’s about number and not feelings. I am in “Spoon Bankruptcy” right now – if it were a currency, I’d be homeless and living in a box.

I don’t even have the Spoons to even go to the bathroom, I need help with even that now… So what Spoons do I possibly have to concentrate, study, and then write up the Tribunal form… even before the anguish and stress of not only waiting for the reply, but then having meltdown after meltdown worrying about it before I go, more meltdowns after I’ve been, and then more after that as I wait for the result. And no matter the result, I’ll have a meltdown because of it – because at the end of the day, it’s emotionally all too much.

This system wasn’t built for people like me… i.e. the chronically ill. You know, the people it’s there for… We struggle with enough, that’s why we need it. It’s even worse for those with emotional and psychological difficulties and understanding. There is no excuse in making matters worse, making us more ill, by having such a flawed system it punishes those who need it the most. Those who are healthy are the ones who can get whatever they want from it, because they have the physical and emotional capacity to do whatever the hell the system asks them to. We don’t. It’s messed up completely.

Should I take this to Tribunal? Oh, with jingle bells on every toes I should. However, in doing so, I am jeopardising my health, my psychology, my conditions, my family life, my parents’ health (and they’re over 60 now). Do they take that into account when they do this to you? Hell, no. I am torn between protecting what little I – we – have, and doing the right thing.

It’s my very own Kobayashi Maru… and I don’t think there’s any way of cheating in this one…

 


The Debit Card Dilemma…

I’ve already worked out that being an Aspie is weird, in the sense that you don’t do things like other people, and psychologists are happy to say what you do and how you think is basically “non- compliment” to “social norms”.

However, I find I sometimes really do fall down the rabbit-hole and find my brain might have extra-weird things. Now, not liking change is one thing… I think that’s quite normal, for quite a lot of people, not just for ASD. But right now I’m in yet another distressing emotional dilemma because I have to change something that [to me] is a friend that has been with me for three years and now I have to say goodbye and move on to something else.

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I’m talking about my debit card. [Yes, don’t smirk…!]. I have to, this month, move away, and kill, my debit card of three years and start using a new one. With different numbers – on the front, on the expiry, on the back…  And this causes me actual distress – and a lot of concern about the change itself. Adapting to anything takes such a long time, and I’ve already had quite enough of that with everything else in my life…

It always has – whether a new card after expiry, or having lost a card (or had it stolen, which happened twice), saying goodbye and using a new one is a difficult thing to IMG_9721overcome. There is real loss there, disappointment, and the change is contentious and disturbing to me. Yes, I’m probably on this little island all by myself, but it’s affecting me, and I’m having great difficulty making the transition. So I’m “talking about it” to try and help myself come to terms with this… As hard as it is, it obviously needs to be done, and there’s a clock on it – so I have only a certain amount of time to actually try and acclimatise to it.

It doesn’t help that this is coming during what is already a time of turbulence and upheaval – and this one extra [small but significant] change is a final straw on the metaphorical camel’s back.

During this time, my condition is getting worse, my best friend and soul-sister has left for a backpacking pilgrimage to South America for god-knows how long (and it was a sudden, impetuous decision, so I had little time to acclimatise and process that, and I needed to help her, too, because she couldn’t organise her way out of a paper bag and is already regretting not taking my advice about her phone because “she knew better”. She didn’t…), and my little sister [OK, she’s 31…] is about to have her first child (due next week, mid-October). Things are already super scary, and I didn’t need anything else on top of that.

Now I have to give up my card and change that, too? I still have cards from cancelled credit card accounts (they’re pretty and I can’t accept they’re gone – yes, I’m weird…) – I don’t know how I’m supposed accept I have to say goodbye after so long.

20140924_231459000_iOSIt doesn’t help I’m being rushed to move on. GiffGaff [network] systems won’t accept that the card expires at the end of October, not on the first day. So it won’t let me use it for my next payment. Thus, I feel pressured to start using the other card already… which seems highly unfair.

I understand no one else usually feels like this, that it’s just a card. But I don’t like change, and there’s already too much going on as it is that is changing everything. I don’t see why I have to do one more very difficult change on top of all the others. I am aware it comes across as ridiculous… but it’s not like I have a choice in the matter – these confusing things just turn up in my head and distress me greatly. And I have no one to help and understand. Hence, the blog. This blog. This entry… amongst others.

This is a strange thing to admit to, and I’ve spent my entire life hiding things like this. Presenting my distress as something else, or generating it subconsciously into other things, always engaging with depression, fear, heated arguments or meltdowns… all because something small like this was distressing the hell out of me. That is why I have been trying to break that barrier down, and discuss or write a blog about things that distress me, no matter how strange or small, because in this case, the truth really does set me free… All it does otherwise is cause horrible or traumatic chaos.

It’s better just to admit to the weird truth and be done with it – even having people ridicule you, or be very confused, is better than the alternative. Either way, the truth is the truth, and you should always accept and own it. Everything else is a fantasy that will just blow up in your face at some point. So now, I’m admitting it: Having to change to a new debit card is distressing and horrible. So there.

… Now, all I have to do is spend a really long time trying to get used to it.

Oh, dear.

*Sad sigh*

 

 

 

Sheldon–What Fresh Hell

 

 

Out Of My Mind...

 

 

 

 


Falling…

I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.

I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.

When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill.  I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.

It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.

No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…

It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?

Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.

Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.

It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…

The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.

I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.

It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.

I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…

 


Oh. Dead. Lord… I’m Surrounded By Idiots…!! 😣😱😤

I just don’t know what to think. Or how to properly identify or deal with these feelings… Incensed? Angry? Horrified? Hurt? Sad? Violated? Victimised? Traumatised? Grief-Stricken?

Who knows…? I certainly don’t.

The PIP Fiasco Continues still… I read the full case notes the unebelivably horrible woman I saw at PIP wrote… and it’s vile. And lies. And I literally cannot believe it. As in it’s unable to be fathomed.

After all her (turn out, disingenuous) pandering and “Oh dear!”s throughout, serious nodding, and looking very sympathetic, it turns out she was writing mainly made up crap and copying and pasting the same sentance over and over again. Typos were everywhere, the omitted “not”s in can not as well as the “un” in unable. She made it look like I was a step away from being perfectly fine and perfectly able to practically hack myself into the Pentagon… It was just such a load of crap it was rediculous.

She was in a rush when she wanted to write it up (quickly, of course…) and just made up crap about me. Withheld vital information, omitted context, and even didn’t acknowledge my mother was right there with me, helping me work out what she was saying, communicating my difficulties, backing me up. And she even spelt my mother’s name wrong, even as my mother spelled it for her. Astounding.

Incensed (I think), I spent four days creating a 25 page rebuke with long lectures about victimisation and outright lying and omitting relevant data. It was detailed, concise and at least true. Let them put it before a judge were they can see and make a decision themselves, with firsthand interaction with me. I’m much better off. I was last time, they kicked the PIP and DWP’s assess and gave me a monumental backpay.

It took them over 6 months to get me an appointment (4 months later than the maximum target they themselves have, very clearly stated on their own answer service). But because DWP will only pay backpay to when the appointment was, that’s all you get. So I got one month backpay, even though they sent me that damned form to fill out back in January. I hate them all… They’re just *insert many expletives*…

It hurts to be victimised like that. It was horrible what she wrote and how she wrote it. Saw she added things in about how I could do this or that when she could see I couldn’t. Outright lied about other things, and (hopefully) misspelled things without “not” and “un” (as abovementioned).

So I hope they suck on those documents I sent back and choke on them… They hurt me badly, and the stress has already greatly impacted the severity of all my conditions, and I literally cannot cope. The entire thing makes no logical sense, or even is within bounds of basic imagination… And frankly, if you’re going to screw me I’d like at least one drink first and a bacon sandwich after.  But not this.

The one postisive side was she was forced to give me “Higher Mobility” because I have to have round wheels now instead of using my legs. With that I get a little more money, but there are other benefits like being eligible for Motorbility, or getting 100% off car tax on a normal car that’s used for you. So we’ve used the car tax discount for now whilst I research what benefits Motorbility offers instead that’s any better (if there is anything better they offer) than what my parents do now with their cars, and whether it’s worth losing that money to them in lieu of a (hopefully) suitable car. Since I can’t drive, this may not be of benefit right now.

On top of that, I’m still also trying to get some sense out of Ableworld Specialists regarding my chair (Friefly). The Sales Rep (who told her it was simple to email her with other requests) refuses to talk to me nor answer her emails. She’s made a mistake with the Centre of Gravity (COG) on my chair, as well as the length of the seat, and now she refuses to acknowledge me.

The one and only time I got her on the phone she spoke with brusque, rude, and semi-indignance (I think – I know it was rude) and barely even discussed it with me. Ironically, she had a rebuke about changing the COG and tipping too far back, when the reality is because it’s too far back I tip forward because it isn’t balanced. Since it’s not her sitting in it all day every day, she should really listen to the person actually in it.

So I sent a complaint directly to customer services. And because she never answered my last email, I’m naming names, because I’m tired of chasing her unprofessional ass through Kingdom Come and back. It was a fairly extensive and detailed email, and I’ve told them to reply within a certain time, with the BHTA to come if they didn’t fix it. So I really hope they do it, because I don’t want to contact even more people.

This is already far and away too much