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…


Always Waiting…

I don’t even know how to say this… I am frustrated and just lost… I feel like I’m stuck in limbo, waiting for some kind of life to start – one that is recognisable as one – and yet after 3 ½ years I’m still stuck and getting nowhere fast.

I have a formal diagnosis, but it’s got me nowhere, except just knowing what I have. The health & social care system couldn’t give a rat’s ass about any of it. I’m stuck on waiting lists that are longer than Andrex toilet roll, and stuck in the house because I cannot go out in the wheelchair I have, despite the extra modifications made to it with cushions. I went out yesterday, and today I just can’t. Despite the nice weather. I have to be stuck indoors because my wheelchair hurt me. Today I can barely feel my legs or use them – even the small amount I can is too precious to be messed around with, so how can I justify using something that takes that away from me? It’s not OK to have to crawl – with difficulty – to the bathroom because of that. It just isn’t.

Even the wheelchair company – privately contacted – has a bloody waiting list, although it’s about a week, instead of months or years. But t he thing is even they are making me mess around and wait – and they’ll be taking actual real money off us. Well, only if they get their act together… it’s not like they’re the only ones out there. So far it will have already been a month since the first fitting to try and get the issues with the “prescription” ironed out – then I’ll have to wait another week or so for the new quote. And we might then end up having to go round again. Even when it’s finalised, it takes about 6 weeks to make it, so there goes that month and a half too. I’ll be lucky to get one by bloody Christmas.

If I wanted one organised with the NHS it would take up to maybe nearly a year to sort it out, which is ridiculous and unacceptable. Despite asking back in January or February for physio (whom, it turns out I would not only need for actual physio, but to sort out eligibility and getting a proper chair), it seems I have only just been referred now. And the waiting list is long. I was put on the waiting list for psych back in January (I presume, anyway), and it seems they have up to an 18 month waiting list. I have also been referred to “Pain Management” … although I don’t know how they can help when your problem is you can’t feel any pain [almost]. The last thing I need is an anaesthesiologist – it’s the one thing I’ve got more than enough of is lack of pain… or anything. Everything that used to kill me with agony I barely notice now. It’s come in handy, but not great when you see injuries, bruises, cuts with dried blood, and you have no idea how they got there.

I’m getting nowhere fast, housebound, frustrated and climbing the walls (only metaphorically, unfortunately). Just… waiting. Existing. Barely surviving. Doing nothing.

I want to do things. One day I’d like to be well enough to have a job again, even part time. But I can’t do that if I can’t even sit in my bloody wheelchair for two days in a row. I’m being hindered and disabled by the system, less my (strange and almost unique – unfortunately) condition[s]. My array of complicated needs and history just makes me invisible to the system it seems, and it’s degrading, demeaning, humiliating, and lonely.

All I want is to have the tools and means to do the things I love – going out with my dog, visiting historical or National Trust places, maybe going on holiday, certainly going to work as a data analyst… and I just simply cannot do that with the state things – and myself – are in now. It’s that simple. And if the government hounds wanted me off ESA and into work, then they should make it possible, not erect barriers via austerity and raging stupidity… Like keeping Jeremy [H]unt in charge of healthcare. It’s like the wolf guarding the hen house… there are going to be many, many unnecessary casualties with no favourable outcome to anyone but the wolf.

What I need is physio, someone to tell and show me how to deal with the paraesthesia and numbness caused by my Hemiplegic Migraine/Weird Fibro combo, a good active wheelchair, emotional support designed for people with ASD, and the opportunity to do what I love (the latter of which I can manage myself).

Apart from the latter, the rest is being withheld from me by extensive waiting lists, caused by a government who screams as all us disabled, disenfranchised, demeaned, ignored, and ill – or “Scroungers” as they call us – to get our arses back to work.

Presumably this is all with the help of the Magic Fairy, who will magic up all the things we need without having to go to the NHS or through Social Care… Because it’s not happening otherwise.

 

 


Wheelchair Madness

Currently being annoyed by how difficult it is to sort out a proper wheelchair. The one I have is heavy, off-the-rack, and not fit for purpose. Not fit for pushing, or sitting in, or going where I want to go, like on basic country trails. It’s great for maybe an older person or less adventurous one who doesn’t want to walk the dog around a country park or Snowdonia lake… but it’s no longer for me. I need a proper active one… before I break the one I’ve got now. It’s already tried to break me… Now it’s time for a proper one.

Someone came to fit me for one… Privately, because I’ve been in this horrific mess for the last 3 ½ years and I’m done waiting. God knows how long the NHS would take… if I’m not dead of old age by then. It’s going to take long enough privately, I’d hate to think how much longer it would take waiting for the NHS to do it. I’m still waiting for everything else, so I’m not hopeful. Hence the private request for a quote.

The experience itself was good – I got to test the chair and talk through the options with the sales advisor… However, what that person did not do was tell me what the options cost. They made it sound like most of it was part of the package, like choosing the frame colour. But… no. Very, very, definitely… No.

Be very careful if you do this yourself, they’ll get you into things you don’t realise cost you a huge amount, but are unnecessary. Like Black wheels for nearly £450… I mean, seriously?? Identical ones in Silver are part of the deal – but they didn’t tell me that, and I don’t think I would have noticed if I hadn’t been an anal Aspie data analyst who noticed one mistake (no, not the price! – an actual mistake in the order list) and realised there was probably something larger afoot.

Thus, I downloaded their “Prescription Form” from the internet, printed it out, then did a cost analysis from what she had added to the list and what I really wanted and really needed. I went full me – data analysis mayhem and data analyst extraordinaire… and I did not like what I found. And I was dumbfounded by how much I didn‘t need. Or even want.

The difference was nearly a grand… over £800 was added to the “prescription” and bill when it wasn’t needed at all. Like the black wheels previously mentioned. Stuff that for £450! – Silver wheels (included), with a cool Spoke Guards for “just” £113, is a much better deal and use of the money. If you’re going to pay an inordinate amount of money for something – it better be what you really want and need… not frivolous trinkets that are unnecessary. I didn’t need fancy wheels, or “compact” breaks, or a fancy Sideguard with a logo sticker (well, OK, that one might be needed, I need to find out more about this “Cold-Resistant” part of it, given where I live…), nor a lapbelt, or fancy footplate of carbonfibre. None of it was necessary – and if I was going to pay nearly £500 for fancy wheels, it was going to be the damned mountain bike ones, not for having them in sodding black!

When I was finished re-evaluating what I needed and hacking apart what she had written down, I got a chair originally billed to me at £3,227 down to £2,422 (including the pretty spoke guards) – or £2,309 without them. The base price (this was for a Quickie Neon²) was £1,645… meaning they had managed to double the price for the first bill sent, which – given you’re dealing with vulnerable and disabled people with probably little income – is terrible. When I added up only the things I really wanted it was only approximately £600 more – a lot, but not double the original price.

Of course, this would be better paid by the NHS – and given the amount of money I’m saving them by paying for my own treatment in home-based Ayurvedic medicine, and how much NI I’ve paid over the years – they should be damned well paying for it. But how long will it take, leaving me stuck the way I am, struggling and feeling like a worthless sack of shite in a wheeled cage?

The Sales Assistant even pointed out that I would be eligible for the chair under NHS Wales, but after so long, I’m reluctant to even ask… PIP utterly refuse to believe I need one (I’m wheelchair reliant outside and barely walk indoors, but only get Standard mobility even after they sent me a re-assessment form back in late January… and that was only after an Tribunal appeal!), why should they be any different? I don’t trust any of them anymore… they all want to save money, not actually help people.

Disenfranchised

I admit that right now… I feel genuinely utterly worthless. I can barely walk. I have to use walkers to get around the house, and a wheelchair to go outside. When I’m in the wheelchair I feel like a little old biddy, all curled up and caged in. I feel pointless. Stupid. Old. Unnecessary. The walkers make me feel like I’m 105 – despite covering them with nerdy stickers. I can hardly do anything myself and I need virtually 24/7 physical and psychological care (which comes from my parents). I need help for everything I used to do myself… and I just wanted to be at least able to get myself around by myself. It wasn’t too bad… but then everything went even more wrong. Again.

Since my conditioned changed to Paraesthesia [Fibro/Hemiplegic] instead of normal unabating agony, I can’t sit in it nor push my chair. I had to buy a backrest for £45 for it, to use along with a sacrum cushion I already had, so I could just sit in it without having to endure 4 hours of spasms just from sitting in it a few minutes. My hands become numbed and extensive Paraesthesia starts in because it’s difficult to push the chair now. I can’t do what I used to do. It’s just soul-destroying.

I need this new chair so I can have some dignity and independence outside. When I sat in that prototype I felt like I was just me. Just me. No illness, no cage, do disability. Just some cool wheels for legs and the ability to push myself without much difficulty at all. I pushed myself outside all the way down the road here – something very difficult and I’d never done it before. I could have even gone further than I did and come back without much problems. The wheels just went. It pegged it with so little effort from me. It was unbelievable. I couldn’t stop smiling at how much fun it suddenly was to go for a “walk” again! I did it all by myself and I was elated.

So… you can see how important this is to me. Getting it right is important – and the only way I would have those optional extras would be if I wasn’t paying for it. Even then… some of them are entirely unnecessary… I absolutely prefer the Spoke Guards over pretty black wheels…!

The fact of the matter is that if we have to buy this ourselves, my parents will be putting themselves hugely out of pocket, and that kills me with guilt. On the other hand we all have to consider my psychological and physical well-being… it’s not good for anyone to be housebound and inactive when there is theoretically no need for it. I’m getting bigger because I can’t go out and burn energy – and the few exercises I can do at home aren’t really going to make me happy, whilst I’m busy missing practising proper, full yoga and Pilates. I want to walk my own dog, so visit places, maybe go on a small holiday to the Lake District or Glastonbury (where all the cool Wiccan stuff is). I want the confidence to go out with friends – and my parents – without feel like a burden. I want to feel like this thing doesn’t own me. Doesn’t keep me in a cage or in pain/Paraesthesia.

I want my freedom. That just shouldn’t be optional.

But just try telling Jeremy [H]unt that… and his other Tory numbnuts colleagues…

Disfranchised… It isn’t a fun place to be at all. I had so much… and now I have nothing. Not even my freedom.

But maybe… One day… Well, you never know.


Saved By Tea….

Yes. Literally.

But not that nasty plain black tea. Pukka tea. The ingredients in it are so potent and effective, it eased what was a nightmare of a massive spasm attack that just would not go away, no matter what I did.

I went into a mass of unrelenting horrible spasms for hours and in desperation I had one of their teas – Lemon, Ginger & Manuka Honey: Ginger root with licorice root, eldferflower, fennel seed, tumeric, verbena, and of course lemon and honey, because ginger was a key anti-spasmodic in my massage oils. I was so exhausted and in so much pain from them it was a Hail-Mary – and then Mary really came through…

Within half a cup the horrific spasms I’d been having for hours diminished. I was able to relax(ish), breathe, be [my] normal again. It was amazing… and it stayed away. I topped it up later with Serene Jasmine Green tea and was able to play more of my game than I had in a long time.

I’m still astounded and relieved that there’s so much good stuff put into that Pukka that it knocked the spasms sideways and they didn’t come back – nothing has done that before. It certainly wasn’t doing it with anything else, and I was trying everything, but they relentless, agonising, contorting, and I could barely breathe because they were constricting my ribcage and diaphragm too. Then I managed to get just half of the tea down me and there was just a complete 180 on the symptoms they finally relented – truly amazing.

img_0886Today (as in the next day) I’ve used Ginseng Matcha Green tea and then the Ginger one a bit later to see how that deals with my symptoms. The Ginseng Matcha is to substitute for my second coffee of the day and it’s given me a clearer head, helped with focus, and seemed to have allowed me to eat something, which isn’t normal for this time of day. They’re not quite to my taste, since I really dislike ginger… but if it can do that, I’ll drink anything.

I still can’t get my head around the fact a cup of tea can do that… but then again, why should it not? Way back in the day, it used to be normal – before “Western medicine”, all “old” medicine was just that – flowers, foods, whatever, boiled into easily-drunk teas, oils, “potions”, etc. Ayurvedic medicine is overlooked too much in favour of “Western Science”, which is a terrible tragedy. It should at least be a option, and still probably cheaper than what the NHS pays for all these terrible chemical pills the pharmacies make and overcharge for. It may not be for everyone, but then neither is all the Western chemical pharmacy drugs…

I can’t imagine there aren’t other people around that are like me – allergic, hyper-sensitive, or [effectively] contraindicates almost all drugs for one reason or another. I’m intolerant or allergic to almost all drugs it seems – I can hardly take anything without becoming terribly ill, far more so than I am without it. As bad as things are, they’d be so much worse if I took everything the docs wanted to give me. Instead, it would have been a lot nicer if they could have sent me to see someone who was an Ayurvedic practitioner, or at least a prescription voucher for Pukka/Holland & Barrett/Whole Foods… Then I’d probably would have felt a lot better a lot sooner.

For me, this has been an eye-opener in what I should be doing and consuming to help myself. That I should concentrate more on the massage oil and aromatherapy recipes, on getting the right things inside me, whether through eating, through tea, through supplements (etc), through to presuming I can only help myself by relying solely on Courvoisier VSOP because there’s nothing else (and if I’m going to consume something that tastes like evil, it should have more benefits than simply turning my brain off and threatening eventual jaundice…).

 

 

 


A Good Cuppa…

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One more attempt to feel a little better… Ayurvedic seems to be the only thing that seems to help, even a little, so I’ll keep going with it. They seem to know what they’re taking about.

After being a lover of serious yoga for the past 18-20 years, Ayurveda has been something I’ve known I can turn to, although without knowing it, I already had been doing so for quite some time. As a child already unable to take most medications, and annoyingly sickly, it seemed reasonable to use proper foods, alternative “natural” things, etc. I suppose it was no wonder Yoga felt like a bit of a eureka moment when I found it – I was already an unwitting fan of the Ayurvedic practices.

This is another step in that direction. It’s about the body and mind helping itself… something lost on Western medicine and culture.

All I need to do now is try and take it more seriously, then maybe that will help ease the symptoms, instead of being plied with a bunch of pills (Pregabalin not included).