Tag Archives: wheelchair user

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…

 

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Some More New Life Hacks

I have added two more “workarounds” for my Firefly (wheelchair) – a cup holder and an iPad/phone holder.

IMG_2249I found out that – for some reason – these things “especially designed” for wheelchairs cost a damn fortune. And there’s almost no choice anyway. So I found alternatives.

The cup holder I found is for prams and pushchairs – it’s a Go Baby Grow cup holder for parents to put on their stroller/pram, and it comes with extra hooks to tie to your push/wheelchair, which are very handy. They were a fraction of the price of the only specific wheelchair cup holder I could find here, and I even got it on one of Amazon Lightening Sale deals.

It’s hot and cold drink safe, easy to put on, and having the extra hooks ended up being really quite useful, when tied to my back push-handles.

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IMG_2252There’s also my iPad/Phone holder: That was on a lightening deal and cost about 10% of what specially made wheelchair ones cost.

This is an iPad arm stand mainly made for tables, but can be utilised with a number of things… and in my case it’s also a wheelchair. I have it clamped to the front, on the side leg, and it doens’t really overbalance or anything when you’ve put it on properly.

It’s been great and makes a big difference to using my phone or iPad, both in the house and when out and about. It’s both out of the way, easily available, and makes the device easily usable. It’s a stable product and the clamp is easy to use and holds in-situ well. I’m very pleased with it, and its an excellent life hack for the wheelchair.

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Thinking outside the box is really important when it comes to living outside the normal rules and you have wheels instead of feet.

Annoyingly, it turns out that walking people make things for wheeling people, then greatly overcharge because they just can. Finding any alternatives can be hard – and sometimes there just aren’t any. But other times, there are a lot more options if you look elsewhere.

Keep an open mind and allow some innovation, and never think the status-quo is all there is out there… Learn to look beyond it and you can get some great ideas! 🙂


Getting Ready for PIP… Again…

It’s the day before PIP: Take Two

I was nerve-wracked before, but now I’m just mad. My 2 large packets of paperwork are ready. I have everything I can think of set – frankly still basically in place since last week – and I’m ready to be irritated and bored by an inebriated idiot who probably doesn’t know much… if they’re anything like that last one I saw, that is.

After the cancellation of the last one, my life went crashing into a tailspin, exploding into all kinds of awful things. It’s basically been a living nightmare for the past five days, and I can only dearly hope that with this finally over with, I can relax a little and get on with still learning how to walk with wheels.

Yesterday, it got a little better… I went to see my sister in Southport and had a good time wheeling around and chariot-racing with the dog all along the prom, gardens, and down the pier – it was definitely something the people of Southport had not seen before! It was a good day out that was more like “me” and I was able to be pretty much completely indipendent, or the dog helped me out. We all had dinner together in the evening in a lovely place called the Fisherman’s Rest, then made the long journey home.

It was the first time in a very long time I’d had a long, successful and fun day out somewhere. It was also the first time my new chariot – my Firefly – had been on a big outing, and she did very well, and I’m really pleased with her. That paid it forward to today, where I had a fairly relaxed but active day. I have much more confident in my little Firefly, and I managed to do a scary thing (which normal people don’t find scary) – which is to see my cousisn’s little baby. Babies scare me, so to meet one, see one, hold one, as a practice before becoming an aunt for the first time, took courage. With my Firefly I had the confidence to do this, and met the baby and her three-year-old older brother… who’s a little maniac and so fun to play with!

To end my evening, before having to face the long night ahead before this awful thing tomorrow, I watched the movie Hidden Figures, which completely blew me away – especially since the story was based around real people and things that really happened. It was terribly inspiring, shocking and heartbreaking, as well as utterly astounding and amazing… and I love the fact it literally took a woman to get a man into space – and to the moon.

To see other women work so hard to trailblaze their way into computer programming, aeronautical engineering, Astro-physics, complex mathematics, over 50 years ago was simply amazing. It was also heartbreaking to watch the horror of segregation they had in America back then… As a Londoner living amongst everyone in a melting-pot, it’s simply unthinkable. As a girl who was never encouraged at school to push for maths or had an opportunity to study computers, to see those who had gone before burning their way into this world right at the top, it’s so encouraging, helping to feel like there really is a place for me in such a world. I’m no savant genius like they were, but I’m capable, and got jobs in IT people that far more “qualified” for it than I was on paper were overlooked for. Being able to do it without formal training is pretty lucky – and then I also get to thinking what I might have been capable of if everything that occurred, well, hadn’t.

In a way, because of the last couple of days, I’m going to this appointment feeling a little more like myself again. I’m relieved at that I will have this form on control – I have dyed my hair, I’ve been out [properly] for an active, full day-out for the first time, and I’ve had good and nutritious food, and I’ve had a far more relaxing night than the last time. I do feel like I’ll have a little more control when I go, at least… so I hope that is something in my favour.

I’m not happy about going at all, but at the end of the day I’m hugely worse than I was when I first ever saw PIP, which must be nearly 2 years ago now. Their original assessment no longer stands, so they really should be documenting that… if they possibly can… I think it’s quite clear what level of esteem I have for these people!

… So… Wish me luck!

 


The Young, The Disabled… And The Ignored

Stereotypes. In this day and age, how do we still put up with people using them without a second thought?

It has, quite honestly, absolutely astounded me that there is little, if no, resources geared for young(er) people with mobility problems and disability.

Since this has started, I have been constantly disappointed in regards to the availability of products suitable for a young(er) person’s life and lifestyle, and almost made to feel as if I should not exist, being a young(ish) adult in her 30s requiring help with my mobility and my ASD. Instead of being catered for – or at least being accepted – I have felt that I “shouldn’t be allowed” to be the way I am.

People in their 30s should be fit and healthy, in the prime of life… Except… Some are not.

I have noticed there is awareness of children requiring assistance – especially with ASD. After the age of 18 I think people and professionals think it magically disappears. I’m fairly certain that they also imagine that no one has mobility issues until they reach the age of 60.

I have been requiring to shop for mobility aids, for disability-friendly products, for wheelchairs and a stair lift. Not one of them has any product, marketing, nor packaging that is actually realistically aimed for young(er) people who want to be acknowledged, with interesting, colourful, playful, and personality-filled products. In fact, older people would probably appreciate such things too… but young(er) people are less likely to accept such a thing.

I have my wheelchair and two walking aids. They were boring, but now they’re covered in stickers – the easiest thing I could use to give them some personality. The new stair lift will be given similar treatment, although I managed to find a company that did one that looked more like it belonged in a pretty, minimalist loft apartment or office, rather than a boring and institutionalised nursing home. It’s also well-made and expertly engineered – I was quite impressed by the sample of rail they showed… made with British steel and made with beautiful precision, and also felt beautiful in its elegantly designed simplicity and thick, cold sturdiness.

The only fly in the ointment was that all the marketing – from the website to the brochure and the DVD was geared towards the older generation – around the late-50s was the youngest that appeared in any of them. It makes me feel like I am… not welcome… to use their products. They’re not for me, or anyone who isn’t “older”. I’m in my 30s… media and marketing makes no room for me in this world – I should be young, healthy, be out running and driving cars and playing with children. I should not be struggling to stand and walk, unable to get up and down the stairs.

Except I am. And many, many others do to. Young people get ill, contract diseases, are diagnosed with conditions, are in accidents – and then subsequently require mobility and disability aids. Companies and manufacturers should have more innovative and interesting products that are as decorative as they are functional – like the Blue Badge Company. Although they, like the others, can fall into the “old is disabled” stereotype when it comes to using featured models (although they use almost no people at all when photographing their products), what they do achieve is having an interesting product range that ranges from beautiful to fun. If only other people realised they should do the same thing…

These products offer the option of independence, of living life to the best of your ability, to overcoming whatever difficulties you have. All the things a younger(er) person requires if they have any kind of restrictive condition – if anyone does need a more independent life, it’s someone that’s barely lived long enough to really have a full one yet, and in some cases, been struck down and is only accustomed to being fully-independent.

I personally expected (naively) to have relevant things that I needed designed to be aimed and marketed towards people other than those over 60. I’m rather put-out that all packaging and marketing features only older people, and that I have to cover everything in nerdy stickers to make them interesting and fun. I’m annoyed that no young(er) people appear on any product to do with mobility and disability, with no advertising or marketing designed for young(er) people.

It’s quite frankly about time this was rectified too. In this day and age of understanding, equality, and levelling the playing field of life to all, this should be a focus of companies who design, create, and sell these products designed to assist with more intendant living. Taking the “dis” of of disabled.

They should be also focusing marking and products for young(er) people. There are (unfortunately, perhaps) many out there – many who would love the opportunity to select a wheelchair blanket with a nice 20-something person appearing on the packaging, or someone in their 30s using a dressing apparatus, or walking stick.

But until they do, I shall have to continue covering everything in nerdy stickers. I hope Amazon continue to have a never-ending supply…!

 

Customise

 

The Truth…
Of course, we all know why this really doesn’t happen – our (pathetic) sensibilities mean we simply can’t bare the thought of being actually faced – bombarded and horrified – with the image of young and disabled people on advertisements and packaging.

Who could possibly cope with the awful images of a young and pretty 25 year old woman in a wheelchair, or with a prosthetic, or perhaps the crippling arthritis she has to endure? Who can possibly cope with seeing an 18 year old young man with a prosthetic leg, or permanent limp use a cane? How on earth could anyone endure having the sensibilities tormented by facing the reality someone in their 30s could have MS or Parkinson’s, seeing an advertisement of them using a bathing aid or transfer board?

The fact is our naive little society would like to continue the myth that only old people get frail. Or disabled. Or chronically ill. They do not want to be faced with the daily reality that young(er) people require these things as well – and would like to be included in such things. Not to be ostracised, or brushed under the carpet. It should be normalised that this is how things are, and marketing should a big part of that.

We buy them, why can’t we be a part of the inspiration behind creating and marking them? Why does it all have to institutionalised and boring? Everything is plain, or grey, or looks like it belongs in a community hospital or nursing home… not the real home of a 30-something nerd who loves fun geeky things, computers, games, horses, and Harley Quinn.

Get a stairlift company to think outside the box and make it look like the Batmobile, or entirely in bright baby pink with fluff. Or create decals and covers especially designed for the chair. Walking and dressing aids should be able to be dressed up and be personalised. Wheelchairs should have “skins” made for the frames (those pretty, specially-designed stickers, like you can have for phones and games consoles), so you can customise your wheels to whatever you please with appropriate products that are made to fit. Do the obvious and put mermaids, fish, bubbles, beautiful sea and beach designs on bathing products.

We decorate and customise all of our things these days. It’s what we (the young[er]) people do. We want things to be just for us. Individual. To our taste and to accent out personalities. I’m a Goth and I love the skulls Blue Badge cover from Blue Badge Company (although it’s actually a “pirates” theme for children – and entirely ineffectively marketed – because I love it… as would other skull-loving Goths I’m sure). It makes me proud to display my badge because it absolutely suits me.

You know what we don’t want? Your pity. Your fear. Your disrespect. We require respect and acknowledgement of who we are, not what we are. We might have difficulties and restrictions, but it’s attitudes that disable someone. We are young. We are in need of these things. We deserve respect and acknowledgement as consumers, as customers, as people who pay out for these things. Ergo, we should be able to expect the full montyto be a part of it, and thusly be a part of the design, the marketing, the packaging… and not be put in a corner and ignored.

And how is it that our society can be so afraid of seeing the truth… and that young(er) people are not always so physically perfect…? We are not always those pristine, toned, healthy, slim, smiling creatures in jogging or car or Bodyform adverts. Sometimes we require Tena and can’t walk. Sometimes we have difficulty managing in the bathroom and with dressing ourselves. Sometimes it would be nice to see someone else just like you, in the same position, in an advert or on packaging relevant to you and what you need to buy.

Personally, I am always especially put off when forced to be confronted by old(er) people in these things, not because I’m afraid of getting or being old, it’s because the marketing and picture given to me is so entirely irrelevant, it’s a 180 from being relevant at all. That is not me. I’m in my 30s and a Geeky Goth… not 78 with a hip replacement (although if the person was 28 with a hip replacement, I could identify with that).

I want to see something relevant in these marketing options… and I absolutely do not care if someone feels “uncomfortable” in seeing, and being reminded of, young(er) people with restrictive difficulties. Tough. I have to live with it – I do not understand why it should affect some stranger walking past a product with such a picture on the front.

Frankly, it’s about time this society stopped being afraid of “disability” and truly embraced it as something “normal” … because to so many of us, that’s what it is and had to become. We shouldn’t be different – we should be the same, but in our own unique way.

And it’s about time everyone else realised that too.

… Especially you, Marketing and PR guys for mobility and disability products….

 

stupid-people-shut-up

 


Freedom On 4×4 Wheels

I had to get a new set of these stickers this evening… I just got a new (to me – my new girl is 7 yeas old…) car and I only just remembered she needed some of her own.

They’re practical, and one is great, quoting:


 

If you want my parking space, do you want my disability


 
It says it all, I think. 

They’re from Disability Motoring UK. They’re a really great and useful charity that also has a great shop. I got about 6 different stickers to decorate my car with… and this time I am cheerful about doing so, because I’m actually no longer ashamed of my conditions. One has been a part of me since (possibly even before) I was born. The other is here to stay, so we may as well make a tentative truce, if not exactly friends.

Thus, I am quite cheerful about decorating my car with these stickers because they’re a necessity. Other people need to know that I’ve got wheels inside my wheels and I require to my space to manage myself. I should not have to play by their rules, so I am now quite happy to just play with mine… which include being able to manoeuvre around the car and get me and my chair out of the car successfully. 

This is the first time I have driven for over 6 years, and the first time I have been physically been able to drive since I got sick. It’s been a revolution, something amazing, like a gift for hanging on in there. It’s been one of my goals since I got sick. Now I have a great and beautiful 2009 4×4 automatic Suzuki “SUV” that feels as if it was made just for me. That combats every problem I’ve had with other cars, even just from sitting in the passenger seat. The chairs are perfect and help combat pain. The size inside is just right for someone barely scraping 5 feet. There’s plenty of space for my chair and tri-wheel walker, shopping, the dog. There’s also plenty of hope in it as well. 

I also got a phone holder and FM transmitter for it, as it was made before Bluetooth and Aux-in jacks for iPods and MP3 players became the norm in cars. It’s got a good CD player, though… If you still subscribe to that ancient medium at all…

 They both worked out really – although I have to admit that for some reason the music coming through the FM transmitter via the Bluetooth on my phone is on the quiet side, even though the radio and phone were turned up to the max. But then I only just installed them today, so there’s plenty of time to work out the mysteries of the FM transmitter!
After my rather challenging experience today of having to reverse in an automatic car back down the narrowest, old, humped bring (in Llanrwst), and tuck it out of the way of the ungrateful sod in front of me who was nose to nose with me the entire time, I feel like I earned some stripes. I didn’t land us in the river, after all… And who knew automatic cars were so different to manual ones…? They don’t half take some getting used to, though this one purrs like a contented kitten about to go to sleep. She’s beautiful and smooth, 7 years old, and had less than 40,000 miles on the clock when we got her.

Oh, and her name is Juicy. Named after the letters in her license plate. And she is, too. She’s a very impressive gal.