frustrations – A Writer In A Wheelchair

Bingo!

When a new carer joins the agency part of their training is shadowing an existing carer to see the sort of things they will have to do. Not necessarily the people they will be supporting but whoever the carer they are working with is. I recently had someone come shadow.

I find that whenever I get a new carer (shadow or actual carer) we have a lot of the same things happen. And after the call ended and my carer and the shadow left I was quite frustrated by the experience. But also half amused because this shadow had basically ticketed off several of my “new carer cliches” a bit like a bingo game.

Knew nothing about me and assumed I need more help than I do ✅

Shocked by how independent I am ✅

Commented on how big my flat is ✅

Offered to make me a cup of tea ✅

The same person is coming back to shadow later this week. Judging by what I’ve got left on my bingo card we’ll be talking about whether I’m close to my family, do they live nearby and how long have I lived in my flat. Depending on whether or not she’s seen my care plan* by then there’s also the optional “what did you do at uni?” square to fill.

*care plans contain a little bit about your history so the carer has something to chat to you about. Mine says I grew up in East Hagbourne and went to university in Stoke on Trent. It also includes that I volunteer for Citizens Advice and due to covid haven’t been able to do as much with my friends as I would like/have previously.

“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user. Usually well meaning and perhaps an attempt at being funny. They aren’t funny. Most of them never were but one or two may have been if not for the fact that I hear them all the time.

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that. When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer. But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of.

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

A Properly Poorly Powerchair

I’ve got a poorly powerchair. I’ve known for a fe weeks that it didn’t feel right but I couldn’t put together what was wrong with it.

Then mum and I went to Oxford to see The Mousetrap and on our way to the station afterwards (I had gone in early for drinks with a friend) she said the back of my chair struck her as wrong. When we got back to the station she had a properly look as we had time before the train and said she wasn’t sure. But I mentioned that I’d thought it felt off and had had a feeling it was something on the front right.

I’d been not saying anything to anyone because I wasn’t sure if I was right and anyway denial was a nice comfortable place to be and meant i didn’t have to do anything to sort it out. But she said I was right and that my front right wheel (my chair has six wheels) was coming on and off of the ground as I wheeled and actually I could see that in the reflection in a shop window.

So I emailed the guy who does my powerchair (at the moment I have two wheelchair technicians because my manual is NHS and they provide servicing for free. Consequently I see a lot more of the technician who deals with my manual). And I also mentioned that I definitely needed new tyres and suspected I was beginning to need new batteries. We spoke on the phone and he said he’d come out yesterday.

In the mean time I was using it as usual and trying not to worry about it. A few people had said to me since then it didn’t look right including a new staff member at Reading Station I’d never met before. I told him I knew and was working on it but in the mean time I preferred if we could pretend there wasn’t anything wrong. I’m not sure he got it but he tried to pat my shoulder in what I take to be sympathy. Let’s just say that I was whipping through the station quickly between trains and he was walking next to me and it wasn’t my shoulder he got…

The technician came mid morning yesterday and within about five minutes had spotted that it had a broken shock absorber, I asked if I could keep using it until they had the part and he paused at which point I added “bearing in mind I went all round Ascot in it on Saturday and round Oxford yesterday…”

Anyway, basically it’s not safe to use.

We chatted a bit more about the chair and he asked me if wanted the armpads replacing while he had if. I showed him a bit that I needed putting back after it had fallen off (the battery cover) twice in the middle of Oxford the day before and he went “are you trying to wreck it?” And well I had to admit that I wasn’t but it really does look that way.

Then after he asked me about book blogging having seen my email signature and I tried to explain, I’m not sure successfully, he left.

Taking my poor poorly powerchair with him.

And they’ve had some of their courtesy chairs stolen so they don’t have any available for me to borrow.

Several hours later he called me back. With what he described as “good news, bad news, and news”

When he got back to the workshop he found my chair has also got a cracked chassis and needs a whole new one. This, apparently, is not unheard of which I find very concerning. Especially as I’ve got a Quickie Salsa M and I’d always heard that Quickie and their parent company Sunrise Medical are one of the most popular/best brands out there.

This was the bad news, along with the fact that I’m not getting my chair back until next week at the earliest. The good news was it’s covered by the warranty (I’ve had the chair since Feb 2012). The news which was in between good and bad was the details how much my new tyres and batteries will cost. Let’s just say its £extortionate but cheap when you work out how long they last and how much taxis would cost (my dad is giving me a lift somewhere tonight. If I had t get a taxi it would be about £6 each way it’s not much more than a mile)

So I’m powerchair less at the moment which makes things interesting.

But it does mean my do NaNoWriMo in a low key way plan is out the window and I’m getting loads of writing done 🙂

You Know You’ve Got CP When…

…the shoes you call your ridiculously impractical shoes are the same sort as your able-bodied sister and mother frequently wear as sensible everyday ones.

For years I’ve lived in trainers. But only a specific sort. So much so that the pair I have now is at least my third identical pair but come to think of it is probably actually my fourth. And I should probably buy a new (but still identical pair) because no matter how many times I look for something different I can never find it. The idea that Skechers might one day discontinue them secretly fills me with horror.

Because no one else does shoes which
Are supportive
Undo completely and very easily
Have no form of heel
I can wear without socks regardless of the time of year
And are deep enough to accommodate my often very swollen feet.

Its no secret that I’m not a fan of shoe shopping and that shoes hold no real appeal for me. The more often I can go barefoot the more I like it.

But a few weeks I went shopping. I needed new black trousers and I was beginning to think a spare pair of Skechers would be an idea. My current pair probably have a few months wear in them at least but having worn my last ones until they fell apart and then for several uncomfortable days after as I literally had no others, a spare seemed a very good idea.

So I’m in Evans getting trousers (and an unplanned but gorgeous top) and I’m looking at shoes because you never know. And I spot a lovely pair of ankle boots.

Several years ago when I was at uni I did have a pair very similar I wore often. My shoe related issues weren’t quite so extreme then but you know it’s still possible…

So being that I’m unable to try shoes on when shopping I check if I can return them if they don’t fit then buy them. And I don’t want to try putting them on myself first in case they don’t fit (my unusual shoe putting on techniques can batter a bit which isn’t good if I’m returning them). A quick phone call to my sister telling her I’ve bought completely unsuitable shoes follows.

She asks in what way they’re unsuitable and I’m like
“They probably won’t fit but even if they do I probably won’t be able to get them on myself and even if I can I probably won’t be able to transfer in them.”

And she’s all “oh in pretty much every way then.”

I popped up to see her and she informed me they aren’t shoes, they’re boots. And then helped me try them on and surprisingly they fitted. They didn’t quite zip up to the top but its not an issue.

Eventually a long while later I sit on my bed and try them myself.

It’s sort of like
I know they fit.
I know how they should go on
But I can’t work out how to put them on cripple style

And as much as mum told me to take them back I’m keeping them. Because every girl needs a pair of ridiculous shoes. Even if they are meant to be the sensible type shoe.

(I was going to end this with something I’ve heard a lot which is that every girl should have a pair of shoes she loves but can’t really walk in. But you know in my CP world that’s pretty much every single pair of shoes I’ve ever owned so I thought it too obvious).

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on ~~the street~~ the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except, to me, it’s not, really. It’s national CP awareness day in the US. I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point. I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do. I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…). I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma. If only… if only…”

I don’t need a cure. I’m pretty much perfect just the way I am. I’m the person I’m meant to be right now. Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more. Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things. I believe disability awareness is important. It’s through the disability rights movement that the community as a whole can improve access and achieve things. Focusing on little things for one condition or another can’t do as much much as focusing on the majority. Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP. Because to me CP isn’t just one day – it’s everyday. And I’m much too busy to do anything more than live my life.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

Rekindled

I’m reading a good book at the moment. I hope to finish it tonight and I’ll review it for my blog in the next few days most likely. When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
Albert Schweitzer

I’ve had a tough year I think it’s fair to say. And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.

I love quotes as anyone who has read my blog for a while will probably realise. This resonnated with me a lot.

I’ve spent time this year feeling as though I was worthless. As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence. It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.

Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.

My family. My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.

The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).

The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh. Those who lurk in the background. The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.

Those who do things I would never expect. On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair. I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.

My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.

10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.

I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough. My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.

Thank you.

>Don’t Look Back In Anger

>I went for my wheelchair assessment on Wednesday. And it went really well. The details and all that are for another entry as I’d like for that to be a positive entry. For now lets just say that I’m trialling a new seating configuration and the question of whether I need a new chair as well is on the backburner at present. So far I like my new seating but I think there maybe a few niggles which need ironing out in the long run.

The thing is though I can’t help feeling a little frustrated and even angry. I was assessed there in 2009 and I told them certain problems I am having. Problems which the new seating I’ve just received is hoped will help with. In 2009 however I had to really fight and justify to get what I did. And then on the day I went for it to be fitted the therapist commented that I was tipping to one side and not sat even (which was something I had told them about before that). The response was to get me standing and rearranged and then sit me down again. I was told I’d need to be care to make sure I did that when I got in the chair and sent on my merry way.

The thing is though I do so many transfers in a day (I tried to count one day but couldn’t keep track) that I can’t always remember to do that. And if I’m tired or ill it goes out the window. Plus even within my chair I can’t keep my body in that correct position.

When I went to see my physio for the first time in July she commented on my position within my chair and said it was the cause of a lot of my back pain. Something she asked me was why I’d not gone back to wheelchair services to tell them and ask for help. The consultant in spasticity clinic commented on the same thing. I gave them both the same answer – I hadn’t seen any need or point in it as it had been like that from the day I’d got it.

I’m hopeful that the problems I’m having can be resolved for the most part and I’m very pleased with recent events. But part of me is looking at how things have been handled now and comparing them with what happened before. And feeling a little bit angry and frustrated about it and about two years of pain etc.

There is little point to it I know and I’m trying to keep the Oasis lyric in mind and let it go. It’s just not as easy as I’d like. I have a friend who tells me he doesn’t let things bother him and just gets on with them. I wish I could do that or that I could learn too. But he can’t explain how he does it, he just does. And actually I think sometimes you’ve gotta take the bad with the good.

Don’t look back in anger,

I heard you say

At least not today

>Interesting Times

>Lately I feel like I live in Interesting Times as in the Chinese saying. It’s certainly been an interesting week.

Monday my powerchair broke down with no warning. In the middle of Sainsbury’s car park. In the drizzle. Although luckily it wasn’t raining as such at that point in time. I tried to talk a Sainsbury’s employee through putting my chair into freewheel but he couldn’t do it (whether my instructions weren’t right/clear enough or he didn’t force it hard enough I don’t know) so my plan of getting a taxi back here fell through.

I called my parents house on the off chance someone was there not expecting there to be. But my sister had had an accident and been in minor injuries with my mum for a few hours. They’d just got back. I also managed to get hold of a local wheelchair engineer and he came for my chair and mum came for me. It did make me smile to see his van turn in one direction towards me and mum’s car turn in the opposite direction towards me at the same time. Talk about the arrival of the cavalry!

My chair has since been fixed, costing much less than I expected and came home yesterday so that’s good. I don’t think there’s much left that could need replacing that hasn’t already been done at least once. It reminds me of that episode of Only Fools and Horses where Trigger gets rewarded for having the same broom for some huge number of years but then adds “I’ve had 6 new heads and 7 new handles but still it’s not bad for the same broom” or some such. Only I don’t think my chair is quite that bad…

Thursday I felt lousy on and off all day. To such an extent that the ambulance crew who took me to my appt in spasticity clinic presented me with a just in case sick bowl (I had told them I didn’t feel properly sick but they insisted) and tissues. Late night, early morning and lots of stress me thinks. My alarm didn’t go off. On the plus side having said they were taking another patient to the JR first they then took me to OCE first instead. Win.

I was just about an hour early and wanted to go over to the main building in search of proper food. The receptionist said “no please stay in the building he’s running to time and you might go in early”. And I then went in just over an hour LATE. (which he didn’t even realise. his nurse apologised to me and he went “oh are we very late?”) I chatted a bit to another lady in the waiting room and her carer (that started because I asked about the over the knee stripy socks she was wearing – v.cool) and did a load of writing on my iPad.

The consultant said that some patients only need one dose of botox and then casting. I’ve had a very good response and my ankles are improved. He went on to say with some patients he thinks definitely repeat the botox and others he thinks definitely not. And me being me I fall slap bang in the middle. We had some discussion about that.

End result being that he wants me to go back “in a couple of weeks” to see him and my physio in a joint appt as she knows me better. If I feel I’m getting worse in the meantime I can ring his secretary and should be able to go back within a week or so for more jabs. I don’t have a date to go back but when I said “are we talking before or after Christmas?” he said almost definitely before.

Oh and one of his comments was about it being a bit of a schlep from where I live to his clinic every 3 – 4 months if they keep giving me the jabs. This amused me because it really isn’t but going back in two or so weeks really is. Not least because this clinic is meant to be a joint clinic with the physios – alternating between my physio and a specific colleague of hers. I did see the colleague floating around but not to speak to and she wasn’t in the room during my appt.

I have however been using the term schlep ever since. I find I like it.

Good news to end on:

I have most of the paralympic tickets I applied for but not all. And (this is the best bit!) I have tickets to both the opening and closing ceremonies!!!

One of my besties who just lives about ten mins drive from me also has tickets to the closing ceremonies. Also a wheelchair space. And also in the same category as I have. Hows that for a coincidence?!

>A Thing A Day and Password Woes

>I deleted and then reinstalled my Creatively Emma blog last night. And I put the same layout (obviously with a different header) up there as I did here. There is officially no content there yet… I have stuff I want to put up but currently I am waiting for my password to be sent to me – i must have mistyped it when I set it up because it doesn’t like what I chose but it didn’t ask for confirmation so that’s very possible. It’s only the second time I’ve had to have a password reset and sent to me since I redid the damn thing less than 24 hours ago. I’ll type the password in notepad so i can actually see if i make typos and then copy and paste it across – tis probably easier.

But yeah, should I ever get into the stupid thing there will be an update there later. It’s not just going to be creative writings there any more.

I’m also doing Thing a Day this month. The new layout on here was yesterday’s thing and today’s was a knitted purse (wallet if you don’t speak Brit) for me to take to swimming. It wasn’t the planned project for today but that’s probably a good thing being as I have 27 more days worth of things to make!

My Thing a Day page is HERE