I ate’nt dead

I took the new racing wheelchair out for a spin. It was…. moderately successful.

As I suspected, the steering works only at speed, which is going to take some getting used to. I also realised that I have the footrest on wrong (for me) and the steering needs some adjustment.

What I realised most of all, though, is that I’m going to have to practice somewhere with very wide paths and no traffic until I get used to it.

Somewhere like The Tees Barrage, which is close by, has some good, smooth wide paths and which you might remember from such Olympics as 2012. If you want to come and jeer at me (and who doesn’t?) then I’ll probably be there much of the weekend. Probably at the bottom of a hill. Possibly upside down.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Racing chair built!

I assembled my new racing chair and have the steering and brake aligned….. I think.

I’ll be taking it out later today to wrap it around a tree first time out, so expect more pictures with scratched-up paint and a bent front wheel.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Broke

I broke a wheel!

It wasn’t my fault, though. I needed new tyres because mine were worn. Changing these high-pressure tyres is a bit of a pain (especially with restricted mobility and leverage) so I got a bike shop to do it. I think they must have damaged the inner tube when they fitted the tyre because as soon as I put any pressure into it, the tube burst and blew the rim off the wheel.

Annoying, I have a meeting with the NHS wheelchair service in Durham later in the week and really need my road wheels for that. Plus, I can’t train properly using my off-road wheels. So I’ve had to buy a new set of wheels instead of trying to claim a new one under the chair’s warranty. And they’re not cheap.

Good wheels, but £300 for the pair.

I’ll go back to changing my tyres myself in future.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Horrific

There’s nothing more I can say about this except to support nia, if you can (by donating to my crowdfunder, if you like) or to one of the many charities supporting Indian women directly.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

More racing chair news

Here’s a better picture of my new racing chair. I think mine will be blue, though. They are coloured according to size, which I believe is common. It’s so trainers can spot the different sizes of chair in a crowd of them. I’m not sure why.

As you can see, there’s a brake mounted on the handlebars, although both look awkward to use. The footrest and seat are adjustable, with the aim of achieving this position:

to deliver as much power as possible through the wheels. It will be a slightly different action than I’m used to, but I’ve been working on my shoulders, so hopefully I won’t have too many problems.

How I will get in and out, though, remains to be seen.

I’m thinking about fixing a camera to the front. I imagine the first few videos will be memorable, but once I stop crashing into walls, they probably won’t be very interesting. The footage might be useful in identifying all the people who deliberately run me over, I suppose.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Speed Racer

I bought a racing wheelchair!

Here it is:

Although I think mine will be blue. Hopefully, I’ll have it by the end of the week.

Choosing a racing wheelchair seems to be almost as pitfall-ridden as choosing a day chair. That’s why I was advised to join a club. Clubs can advise you on what options are available and help you choose between them. I’m not much of a joiner, though, and while there are some wheelchair athletics clubs in the region, the ones I looked at a few months ago didn’t seem to be very active of late.

So I bought this one, the Flying Start, from https://www.motivation.org.uk for what currently seem like excellent reasons. We’ll see how that works out. Those reasons are:

  • Price: the Flying Start is considerably cheaper than most, coming in at well under £900 delivered. I’ve seen other chairs costing more than ten times that amount. That would be a huge investment, especially since there’d be no way to tell whether that chair would be right for me long-term. I’m more than happy to buy this cheaper model, learn from it, and buy a better one in a year or two if necessary. I can always donate it to a club if I upgrade.
  • Flexibility: The chair can be configured for kneeling or sitting. Many seem to be kneeling-only, which would not be appropriate for me. In both configurations, the seat and footrest can be set to different heights and angles, which should compensate well enough for it’s not being built to my exact measurements.
  • Charity: https://www.motivation.org.uk is a charity, which does some great work, as you can see here. 100% of the profit from the chair will go to the charity. They’re all about providing wheelchairs appropriate to the needs and environments of disabled people around the world and working with the infrastructures of those countries to get the right chairs to the people who need them. The main reason they designed a racing chair in the first place was so that clubs could buy cheap chairs to lend to disadvantaged members who could not afford their own.

I had more or less decided on the Flying Start for the first two reasons, but after I read about the third, there was no other choice to make. Seriously, have a look at their projects and strategy, some impressive clear thinking and – above all – listening has been done.

I’m expecting it to take some time to get used to the chair. I’m not sure whether I’ll be able to use it in the Sheffield half marathon in March (although I hope so). The pushrims are much smaller than on a day chair, of course, but the main difficulty is going to be the steering. There’s a lever at the front to steer and I’ll have to take at least one hand off the wheels to operate it. I’m used to steering with the wheels themselves, of course, like a tank, so I expect I’ll end up leaving skin on a few walls before I’m competent for a public appearance.

Have a look at the https://www.motivation.org.uk site and donate to them if you can. But only after donating to my own crowdfunder, of course…

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Pain

I’m on the last few days of my last few dribbles of pain medication (Prgabalin, a nerve blocker) then I’m drug free!

I’m stopping taking the pills because I hate the side-effects, the most severe of which is a throttling of my concentration. I was struggling for words and for conceptualisation. I was thinking always through a fog and I didn’t feel like me. Since the drug wasn’t even relieving my pain particularly well, my choice seemed clear.

Now that the drugs are mostly out of my system, that has changed to my great and enduring relief. But of course with that has come increases in pain.

Lots of it. Lots of increases, lots of pain. So far, I’m managing it, but it is… difficult.

It’s hard to characterise pain, but I have three basic types:

  • Just general pain all down my legs, particularly in my thighs and feet. This feels as though my legs are being crushed and it is constant and very severe.
  • Contact pain. Touching the skin on my legs causes severe pain. This lasts while contact is held but becomes less severe over time. If I move the point of contact or release and reapply the contact, the pain begins again, as severe as it was the first time. Wearing clothes triggers the contact pain, but annoyingly, so sometimes does not wearing clothes. It’s worse at some times than others; it tends to be worse at morning and night. Which is the worst possible time for it to be worse as it interferes with sleep.
  • Shooting pains. These are awful, proper, nightmarish lightening-in-the-bones. But thankfully they are intermittent rather than constant. They tend to be worse during the evening.

So this is what I have to work with and I imagine it will get worse as the last traces of the medicine leave my body.

I still think I’m doing the right thing but I’m under no illusions; the next few months are going to be hard.

I’ll write about some of the ways I’m coping with pain soon.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Motability

Motability is a UK scheme that converts certain mobility-based benefits into a lease on a (possibly adapted) vehicle, wheelchair-accessible vehicle, mobility scooter or powered wheelchair.

I was recently awarded PIP (Personal Independence Payment) at the enhanced rate, which means I qualify for the scheme. This will take all of my PIP payment, but it’s a good deal: a car for three years, with tax, insurance, servicing, breakdown cover and certain repairs included. As long as I don’t use the car for criminal activities, or they’ll take it off me.

I’ll most likely order a car at the weekend.

The car will be great. We live in a small village with public transport links that only technically exist (they are not wheelchair accessible). I rely on my wife or on having plenty of time and good weather if I need to get anywhere. The pavements and roads are in dismal repair and/or insanely dangerous. This is not ideal for training.

So the car will be used mostly to get to areas where there are better training conditions. I have a few in mind with nice, wide, flat spaces, a variety of road surfaces and inclines… It’s going to make a big difference.

Here’s what I’ve learned about the practicalities of the scheme so far:

  • Some vehicles require an up-front payment, which can range from £49(!) to several thousand. This depends on the type of car and its features. It’s a little bit mystifying, but in general, up-front payments are larger for automatics, hybrids etc. There are plenty of perfectly good vehicles available with zero up-front payment, though.
  • If your car needs any adaptations, you have to pay for that yourself, although I’m told it’s possible to apply for a Motibility grant for that. I haven’t looked into that yet. My car will need adapting for hand controls, because I can’t use pedals. I asked a dealer how much this would cost and he said £150. This seems… ridiculously low and I’m deeply suspicious of it. I’ll find out more at the weekend.
  • There’s currently a lead time of around 4-6 months. This seems to be true across all manufacturers. Dealers don’t have the cars in stock, they have to be ordered from the factory. It’s taking a bit longer than usual lately, presumably due to COVID.

I’ll know more at the weekend, by which time I might have ordered a car. I’ll report back.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

PIP

My PIP (Personal Independence Payment) application was successful! I’m as surprised about this as anyone else.

Surprised not because I’m not eligible (I am) or deserving (who can say) but because a lot of people have difficulties with the system and many have to fight far more fiercely than they should. It all went very smoothly for me (although I can’t pretend it wasn’t stressful).

PIP requires an assessment, which is carried out by an independent private company. Of course, the company does not have the same goals as the applicant and does not have our best interests in mind. Presumably they have such things as targets, and keeping the number of successful claimants low has to figure in to their decision-making process somehow. This has led to a lot of people who need help not getting it, which is shameful. PIP will greatly enhance my life and will put me on a more level playing field with the able-bodied, but I’ve no doubt that there are people who need it more but have been confused, intimidated or conned by the application process.

My success is probably due in part to COVID. It meant my assessment was carried out by phone rather than in person. This has as many drawbacks as benefits, but I think it makes preparation a little easier. It also cuts down the bandwidth: I’ve heard stories of people being told that looking cheerful during the assessment counted against them. I do have a lot of experience of applying for (mostly academic research) grants, though, which I’m sure must have helped.

Anyway, I was awarded PIP at the Enhanced Level, which means I can use the Motability scheme to lease an adapted car. This (usually) takes up the whole of the PIP payment, but it’s definitely a very good deal. I understand the scheme in principle, but I’m just starting to learn about it in practice, so more on that later.

If you have good or bad experiences with PIP, let me know. You can find out more about it here and I’ll answer any questions I can about the application process.

As always, take a look at my fundraising page. I’m doing wheelchair half marathons (hopefully three this year, plus sundry 10k events) to raise money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

Fundraising page live

My fundraising page is now live here!

I’m raising money for nia, a women-led, women-only, secular, rights-based registered charity which has been delivering services to women, girls and children who have been subjected to sexual and domestic violence and abuse, including prostitution, since 1975.

I’m competing (although ‘competing’ might be too strong a word) in several wheelchair distance events through 2022 and beyond including the the Sheffield and Leeds half marathons (March and May), the Middlesbrough 10k (September) and hopefully the Great North Run (also September).

My JustGiving page for the Sheffield event in March is here.