Category Archives: Wheelchair & Mobility Accessories

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! 🙂


Reflex Runaway…

Coped with today by running away to Liverpool for the day.

How else does anyone cope with what happened?? I was in a tizz, all over the place, unable to cope, or even process, what just happened when that guy called to tell me the appointment had been cancelled and rescheduled… So my mother took me to Liverpool.

It’s a comfort zone for me – the closest I can get to feeling like I’m “home” without actually going all the way to London… I’m a City Mouse, and speciafically a London Mouse. I am lost without it. going to Liverpool is the closest I can get to it, and because its almost as familiar and comforting to me as London is, and has been a place of great comfort since I was a youngster, it was a sensible place to abscond to today.

img_0877This was the first time I had been out on a rather long excursion with my new chariot. She’s called Firefly, by the way… After the ship on the show of the same name. It did not start off well , but when we did finally manage to make it to the L1, it went Ok – until we had to leave, of course…

Liverpool city centre and the L1 is pretty wheelchair/ mobility friendly, and it was so easy to wheel around there in my new chair. I mainly went to Superdrug (I desperately need to dye my hair and needed hair dye…!), where I got some great lipstick shades from Maybeline, and to Lush to get my favourite healing foundation, Jackie Oates, and the most amazing shower gel, It’s Raining Men.

After a few minutes of looking at phones for my mother at Carphone Warhouse, we then head back to the L1 to meet with my sister. She’s not feeling too clever, at around five months pregnant and it’s maybe 20ºc outside… So she’s feeling the weight and size of the little Kitten inside her, bless her. We end up going to Pizza Express and eating there. I had gluten free vegan pizza (including artichokes, asparagus, red onion, and vegan cheese – it was so nice!) and a small glass of wine to help with the buzzing in my hands.

The weather was glorious, it was nice there, my sister was there, I was eating food in a restaurant that wasn’t going to half-kill me, and finally something good was happening on this day…!

Now all of that was a nice time. Then it all went weird again when we went back to the car and my mother attempted to pay. The machines wouldn’t work, and it took ages to get it sorted.  By this time it was 19:43 on my phone, and the place closed at 8:00pm.

Then when we got out we ended up going to wrong way, and eventually went back home via Speke (and John Lennon airport, where I saw no planes! 😲🙄) and Runcorn. On the journey, mam selected a way home I wasn’t comfortable with, so I got very aggitated, because of the state I was in, and I couldn’t stop being tizzy about the PIP appointment. It was now once again hanging over my head at a time it was supposed to have been over with and aggravating just about everything.

By the time I got home, I was in quite an aggitated state. After a couple of big panic attacks, and readjusting to being home, I decided to do my dance DVD to burn the anxiety of. Smile and Sway is a pretty fun DVD and it’s good for burning off steam whilst enjoying some good dancing, and interesting, fun moves. I felt better after doing this, and that was when I finally managed to get upstairs in a better mood, ready for tomorrow.

img_0879The physio is coming tomorrow (again). Apparently, they’re supposed to have some kind of “plan”… I don’t know what kind, or what I’ll be expected to do. Hopefully, I’ll also have a shower, so on Friday I can dye my hair (whilst watching the Wimbledon Men’s Finals as it’s brewing….!) – but we’ll have to see. What I do hope is there’s going to be something I can do to my legs, which just can’t move on their own, so they’re missing out on so much – it’s not like they can yoga and dance like the could do. And they miss it.

Hopefully, I’ll be up for it and be able to make the most of whatever she says I should to.

So, overall, it turned out pretty OK in the end… But it certainly wasn’t an easy one – and I’m so glad it’s over with now!


Great Expectations…?

I actually have real “Kid on Christmas Eve” type jitters… My new chair is coming tomorrow, and hopefully a whole new world of freedom to accompany it.

I do hope I’m not setting the bar too high for disappointment – it’s quite a common theme with me, after all. However, I suppose I should still hope without being actually bouncy-excited. There’s always that capacity for bad things to happen.

Instead, it will hopefully the start of being given another new chance to embrace opportunities old and new.

From something as simple as a trip to Tesco, to going on holiday somewhere, that chair is going to make a big difference in my life, will offer freedom. I’ll be able to do things and go places in it, and I’ll finally be able to move about and leave the house again.

The last 6 weeks or so has been torturous… and now the end is near. I haven’t slept all night last night, and I haven’t slept since (yet, at least) either. I presume I shall sleep tonight I, quite early. That whole Christmas Eve thing has been in my head since I was quite young – and I mean that idea that the faster you go to sleep, the faster it’s tomorrow. It works backwards too – not sleeping or falling asleep late makes a dreaded next day appear far away.

Well, when I wanted Santa to come I made a point to fall asleep quickly – being unconscious in sleep means that the next day appears only a second later. You wake up and there it is. You’re not at all aware of the 8 or so hours that bypassed during that time.

So that is what I hope to be implementing tonight, and I think that might happen because I’ve behaviourally done such things since I was a child.

I just hope it all goes well (knock on lots and lots of woods).

 

 

 


Better News

The weather is still terrible and the isobars continue to fall… and having checked the weather app, it appears this is expected to continue all the way into July.

Quite typical, really, considering the news I’ve been given today – you know, after the four days of hot weather and nice days we had…

I’m finally getting my chair on Friday (it’s Monday today) – Horrah! The nice lady who had been dealing with this even took the time to say how much she actually liked it (I put some interesting design choices on it) and that all the colours etc went really well and it looked great. So I’m hopeul I shall appreciate it for its practical and aesthetic reasons.

There is a long way to go still to stabilisation, but this is definitely a trophy chievement award along the way.

Three more days until Parole… 😋😎