Tag Archives: Quickie wheelchair

Independent Struggles

Second day of stumbling around, attempting to survive on my own under these… unpleasant circumstances. You would think it would be better. Easier.

Yeh… It’s really not.

It’s been worse. Now I’m sitting here, in my chair in the lounge, watching Andy Murray, alone and cold, unable to reach the damned radiator and turn it on (there’s a table I can’t move in the way), wrapped up in my mother’s fluffy dressing gown, I’m regretting being alive…

I’m certainly regretting being ill.

It’s been a nightmare day, and it’s not even over yet… Althouth it feels like it’s been about a week already. I’m in turmoil and frankly traumatised as to how much of the downhill slope I’ve actually gone. This morning, as always, I woke up confused, disorientated, with the only conscious thought emerging of that I was supposed to eat my meds… which were not where they were supposed to be. I was distressed and in pain, barely able to move and yet still attempting to find the medication.

Then the dog starts going bananas because the postman is at the door and the bastard just won’t leave the package and go  so the dog with shut up.

Both of my legs were dead (I could manage some twitches with my left, though… score!) and I couldn’t barely even feel them. I couldn’t get up and the dog wouldn’t listen to me. I was distraught and confused, becoming more and more panicked as I tried to make the noise stop so I might at least find my meds.

My father finally made the dog stop. I finally found my meds. I struggled to take my tea and coffee left for me. My back was burning so much I could barely breathe through it, my hands were numb, and I just about managed to get myself up onto my elbow for the few seconds it took to drink each one. Such a fun start to the day…

I lay there, so upset at the fact it was so difficult to do such simple things as get up and drink tea/coffee, anguished at the confusion and disturbed perception of where I was and even who I was… I was also in a rediculous amount of pain in my back. For company, for something for my mind, I somehow managed to get the TV on, playing live shows over TVPlayer on Amazon Fire TV Stick. It helped. After about an hour or so, I realised I had to go to the bathroom – so at that point I was forced to do something about that.

Unable to really move my legs, I dragged myself up to sitting. I pushed my stuffed baby penguin and favourite little pillow into my canvas tote, added my phone and iPad, then proceeded to put it back around my neck and carry it, dragging myself along to the stairlift, and finally into my chair. I had to take a half-glass of wine to dull some of the pain/paraesthesia in my back, and I had another downstairs – I coulnd’t put oils on; I tried (numb hands and small bottles I can barely hold anyway do not mix, especially when sliding with oils).

At least I made it to the bathroom after that, anyway. That’s definitely something very important!

I managed to place myself in the living room. Watched On Demand TV and helped dog with his paralysing fear of overhead RAF planes going around, until 12pm when the tennis started and the dog was happy again.

So here I sit. Many, many, many hours later. Hands are funny – buzzing, numb-ish, tense, a little spasmy and cramping, with some electric shock-like pain. My back, upper legs and torso are all kinds of not OK, from the beginning of real spasms, to buzzing, to cramping, prickles, and burning. My lower legs and feet don’t really feel like they exist and are freezing to the touch (despite being wrapped in a fluffy dressing gown). I am unable to get dressed on my own, and I realise I left my big cardigan upstairs (not realising I would need it). So I remain cold. Borderline frozen. Just hoping I don’t actually die of hypothermia on contract frostbite whilst I’m down here…

I managed to not throw my food on the floor again, at least. It’s a start… But this day is just so hard… It makes me feel terrible that I just really can’t manage for myself. I’m glad I don’t have to do this tomorrow (my mam is off work), I would not be able to cope. I’m not coping now. My head aches, my muscles and bones ache. The isobars are all the way up, pretty much, so clearly having help makes a huge deal as well..  Even putting things out for me doesn’t really work – it’s not exactly being “independent”, is it?

The fatigue is overwhelming. Not having the correct “care” is hurting me and having a direct impact on my welfare: You know, you just don’t realise what a big impact that makes on you until it’s no longer there anymore! The “new” version of Fibro Flareup is hitting me again… and funnily enough, I don’t really appreciate that, either… Seriously, is this day really not over yet??

 

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Finally Freedom

The chair came – and such a good thing it did too.

Today I really, really needed it – and found out how much freedom and indipencdance it really does bring,

Firstly, on 30th June 2017, Lou[ise] from Ableworld came around 12:30pm and made sure it fitted, showed how it all worked, all the little neuonces to it. Then it was all mine.

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I went to Penrhyn Castle first (it is not suitable for wheelchair access at all!). It was only because of this thing I was able to enjoy it – or get into it! – at all. Yesterday (the next day), I spent the afternoon/evening out in the local town with a friend I hadn’t spent any proper time with for years, not since I became ill. I pushed myself the entire time, and it’s a very difficult place to generally manage.

I’ve never been able to indipendantly manouvre around this place single-handedly before. I was quite amazed I had managed. First we went to Starbucks, and walked all the way to the other end of the long high street on a rather steep hill, all the way up to my favourite pizza restaurant. We had pizza and cocktails at Johnny Dough’s and really enjoyed ourselves. It was a lovely day out, much like the ones we used to enjoy back in London, and I was so relieved to have a “normal” day out for once.

However, that elation came to a crashing halt today. After passing out from a Fibro flareup in the night, about 11:30pm, I awoke around 3:30am and barely [physically] made it into bed. I ended up unable to sleep after that, eventually going out again about maybe 5am. No more than two hours later, my mother woke me up to tell me my father (my main day carer) was violently ill during that night, throwing up. She had prepared my teas and my meds, leaving them there for me next to some coffee (which I drink mainly cold in the morning) for when I did wake up. I wasn’t happy, but I allowed myself to go out again.

At 9:25am my usual meds alarm went off and I managed to take them with a bottle of water also left for me. I immediately went out again, only coming round properly at around 1:30pm. I was woozy, disorientated, confused, afraid, and my eyes were glued up by about three layers of mascara still on my face from the day before (having never taking it off due to passing out). I had no one else to turn to – I rang my sister to help me orientate myself and help me from feeling scared and confused. Bless her, she spent about half an hour with me over the phone, chatting, discussing, telling me about the renovations on her new house, and what she was up to.

By the time she had to go, I had managed to consume most of my teas and felt clearer-headed. I then had to work out what on earth I was going to be able to do with myself. I couldn’t feel my legs – there had been no one to help me with massaging (I don’t have the strength to do it myself, more’s the pity), nor used my essential oil massage oils on me (I couldn’t find the morning one, and could barely move to do so). It was then I remembered the chair downstairs. It was to be my saviour.

I managed to drag myself to get my canvas tote that I keep my things in, and put my phone and iPad in. I subsequently had no choice but to then place it around my neck and drag myself to the stairlift. I managed to get up into it and took myself downstairs. The wheelchair was left folded in front of where the stairlift comes to an end, so the transfer was easy. And once in… I was free to do whatever I wanted to do. Which was mainly to go to the bathroom, frankly.

Without this chair, I would have been screwed today – even something as simple as going to the bathroom would have been a nightmare. Food would not have been an option, that’s for sure.

I took myself to the lounge after and entertained myself in there, mainly talking to my friend over Facebook Messanger app, and nosing about online, whilst watching on demand TV. I struggled to make myself food later, around 3:30 or 4pm, and dropped some of it on the floor. I could barely manage to eat the rest I was so upset, and I made some more replacement side dish after I stopped crying. I had to stay in the kitchen to eat, which I didn’t like (it’s far too bright in there, with no blinds), but after all my struggles I got my dinner in the end, and returned to the lounge to watch (don’t laugh) Ben Affleck’s Ant-Man.

After feeling terrible about losing so much independence again, being unable to manage to do things like make food without a farracas, I had (gluten free, dairy free) ice cream. Then I got out my new seated dancing DVD and proceeded to try and cheer myself up.

The Smile and Sway DVD looks like it might be a strange and over-enthusiastic attempt at making ballroom dancing fun… but it’s far more than that. It’s 40 minutes of dancing fun, from ballroom favourites of Tango, Foxtrot, and the Cha Cha Cha, to Big Band and Jazz Hands, via the Jive to a little ballet-esque technique, this is a lovely doorway into a world I thought was no longer for me. To be back in a world of fun dance routines, Fosse-style moves, ballet arms, “Big” arms, and “Big” moves… it was a relief to be engrossed into something I had missed so much, and that was so familiar to me.

It wasn’t all so great: I missed my medication time by over an hour, but luckily there was some downstairs. I had been unable to make my teas, or even any coffee (I can’t hold nor lift the kettle), and had to rely on wine to keep my mounting paraesthesia at bay (I don’t know what it switches off, but it does the trick when necessary). I kept banging into things, and knocking paint off the skirting boards. I had to wait for my mam to come back from work to have some dinner. I ended up watching Big Bang Theory and felt a little sad again about not being able to manage things myself. Apparently I also even somehow managed to burn my hand a little… I didn’t notice until I noticed the red burn  mark on my finger just before I went to bed.

I’m glad to be upstairs, but that also comes with the fact that getting to the bathroom is going to be very difficult. I’ve so far spent hours and hours avoiding it, but I don’t think I will be able to manage putting it off much longer (it’s actually 3:30am now…), and I’m going to have to take up all my strength, courage and will and face the horrid and difficult struggle to get there and back.

My father is also still ill, so there’s a very good chance that I shall be facing the same kind of day tomorrow. This time a few more things will hopefully put in place, and I’ve already had the traumatic practice-run today.

Thank god for that wheelchair…


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).

 

 

 


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.