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A word on training

I should start by saying that I don’t really know what I’m talking about. In my youth, back before the old king died, I was very fit. I did a lot of martial arts training, played badminton every day for years, ran about five miles almost every day and walked everywhere else. Injury and life rather got in the way of this and it was really only last year, at age 48, that I decided to start exercising regularly again. It was only this year, approaching 49, that I decided to train seriously.

Between those two dates, I lost around 7 stones in weight, but I also lost the use of my legs, so you will understand that my exercise regime has changed greatly. Even back in my youth, I had no formal training in fitness, no training in losing weight or graining stamina. I relied on my whippersnapperhood and on gradually pushing myself harder when whatever I was doing began to feel easy.

With age and infirmity, I feel I have to be a little more precise in my measurements. I’ll explain my thinking more fully as it develops, but for now, here’s the routine I’ve settled into for the time being.

Rollo is the key here. The rolling road means that I can train consistently and in all weathers. Of course, rolling on Rollo is different to rolling on real terrain. There’s no camber, for one thing. No potholes or broken glass to avoid (I feel like I might be painting an inaccurate picture of where I live, but it’s lovely here, honest.) There’s no wind resistance or hills. But the idea of Rollo is like that of a treadmill: to perfect technique and build stamina. I also train in the outdoors, but less consistently than I should. More on this in a later post.

Every day I do four runs of 35 minutes each consisting of repeated sets of:

400 normal strokes
400 strokes of alternate wheels, one at a time, at a faster rate than the above

Finished with five minutes of backward strokes. I’m told this is important because shoulder injuries can occur if you don’t develop those muscles too. Wheeling a chair is not really a very natural action for a human so it’s important to avoid causing undue stress on muscles and bones.

At the moment I’m not accurately measuring the frequency of the strokes; I’m just pushing as hard and fast as I can manage and counting to maintain a rough sort of frequency. I’m measuring (using my watch) the overall number of strokes per session, aiming to keep them roughly consistent. I’m also monitoring my heart rate, which I’m trying to keep in the stamina-building zone. None of this is very scientific and I’m working on ways to improve that. I need better ways to tell whether I’m improving. One improvement I’m thinking about is a metronome app for my watch to keep my strokes consistent. If there isn’t one, I’ll probably write one. In my imagination, this would make the watch pulse once per stroke for a set number of strokes until I’ve got the rhythm, then pulse once per, say, ten strokes so I can learn to keep the rhythm without constant reenforcement. And without killing my watch battery when I’m barely out of the starting blocks.

I’m also trying to keep an eye on technique. Correct technique requires sitting fully upright (or backward) in the chair and using long strokes from as far back on the wheel as possible. When I do this, I can feel it in my chest as well as my arms and that’s how I know (as far as I know) that I’m doing it right. I have a tendency to lean forward, especially when I’m getting tired, and I need to kill that habit.

There’s lots more to say about training, especially in the outdoors and with weights. I’ll say those things in future posts.

Choosing a chair: update

Predictably enough, the chair I chose was not available and I had to choose another. To be clear, I knew that the original Kuschall K-Series had been discontinued by the manufacturer, but that there were still some examples available to buy. However, the retailer I chose, Invictus Active, doesn’t have any in stock. I’m sure I could have found one elsewhere, but it turns out that:

Invictus are a little cheaper than most of the retailers I’ve found
They are currently offering a set of free offroad wheels with some new chairs, and
I’m lazy

So I chose another chair instead. As I said in the previous post, there isn’t a great deal to choose from between chairs at this price range (as far as I can tell) and I applied the same criteria. This is what I’ve ordered:

It’s the Quickie Helium, and while the brand name is as lame as I am (Quickie? Really?) I am assured that the chair is not. It’s a little lighter than the Kushall at 6.8KG (without wheels), which is about the same weight as my (admittedly monstrous) cat. Let’s hope it’s a good choice. It was a little more expensive than the Kushall, costing just a little over £2000.

The next step is to customise the chair (colours, options, accessories) and to have it built to my measurements and specifications. Much and great importance is placed on measurements when buying a wheelchair of this sort. I’m not sure quite how important that really is, though, since the instructions for measurement are fairly fag-packet, blind-man-on-a-galloping-horse in nature. We’ll see, I might get told off for saying that. Here’s Invictus’ instructions, which are much the same as others I’ve seen.

Invictus wheelchair measurements V3 Download

Invictus will be in contact in the next day or so to take those measurements and it might turn out that they’re really, really important after all, so be prepared for a grovelling update. As for other specifications, other than colour (of which there seems to be a bewildering array) the most interesting to me is the seat angle, which determines the centre of gravity. This seems to be the main factor in choosing between stability and manoeuvrability. On the face of it, this seems like a no-brainer; I’m always going to choose manoeuvrability over stability. But I suspect that it some configurations might be better than others for the kinds of moderate distance (half marathons, to begin with) I have in mind, so I’ll be taking advice on that. I’ll report back if and when I learn anything about that.

I still have a lot to write about wheelchair accessories. It’s a singularly frustrating topic and there’s very little advice to be had (hence this blog). But before I post at length on that subject, I should mention that I also ordered this thing:

It’s an attachment rather than an accessory, I suppose; It fixes onto the front of the chair, where the footrest usually attaches. It’s for offroad and uneven conditions. Given the state of the pavements around here, I suspect it will get a lot of use.

Choosing a chair

The good news is that I’ve picked a chair that I think will suit me well. The frustrating news is that the company I want to buy it from doesn’t seem to want to sell it to me. Contact with them has been sporadic and mostly in the wrong direction. If I don’t have any success today, I’ll assume my time has been wasted and look elsewhere.

The chair I’m looking at is this one:

It’s the Kuschall K-Series (not to be confused with the Kuschall K-Series 2, which it frequently is).

Choosing a chair is difficult. It’s hard to tell from the specs which will better suit my needs. This is partly because those specs tend to go into unnecessary detail about the manufacture and materials which:

Are largely irrelevant to how the chair will perform in practice, and
Seem to be there mostly to distract me from the fact that most chairs are fundamentally the same.

So I made my decision based on these factors:

Price. I want to spend something in the region of £1500-£2000 on the chair. I could go higher, but from what I’ve seen, spending more than this yields diminishing returns. If I’m given a good reason to spend more, then I might, but I haven’t found one yet. Besides, if the price is in the low end of that range, I can justify optional extras.
Frame. I’d prefer a rigid frame. I understand that some folding chairs are now very good, with ingenious mechanisms to prevent movement and stress under punishment, but since I can’t try out various wheelchairs due to pandemics and the lack of suitable suppliers in the region, I’d rather not take the chance.
Adjustability. Most chairs in this price range are highly adjustable so it’s a condition that didn’t prove to be important in practice, but it was definitely a consideration. I don’t know whether a slightly different configuration might be better for speed or endurance or comfort… so I’d prefer to be able to adjust the thing depending on how I end up using it or if my needs change.
Looks. This is not entirely shallow because I spend a lot of time in the chair. A lot of people focus on it, rather than me, especially when they see me in it for the first time. I can’t help but feel self-conscious at times, so I’d prefer to like the way it looks.
Weight. In models within this price range, weight varies between ~6KG and ~10KG. Most are between 7 and 9. I’m not keen on the chair straying outside that range, but neither am I fanatical about a matter of grams. As long as I can lift the chair into the car with me unaided, I will be pleased.

Without digging into the specs, the Kuschall K-Series fits the bill. It has a rigid frame, costs a little over £1600 depending greatly on where you shop and on the main fram’e material. The K-Series comes in either aluminium, titanium or carbon… but I can see no compelling reason other than price (and looks) to choose between the three. The weight is about the same in all three cases and while some cagey claims are made about strength, I’m not buying them. Literally not buying them, I’m opting for the aluminium frame, saving some money which I’ll probably spend on extras. More on those extras later.

So today I’ll be trying for the last time to contact my so-far preferred supplier and/or looking for a new one that can match their price.

Recovery

From pain, that is. At least, it’s back to its usual level of only moderately intolerable. I will no doubt therefore massively overdo training today to overcompensate for being a bit slack over the last two. Activity doesn’t seem to cause flares in pain (there’s no pattern I’ve been able to spot) and it definitely helps in the short-term, so the worst I can hope for is some stiffness.

Nothing to report, why are you even reading this?

Well, a couple of things to report, otherwise I wouldn’t be reporting it. I wanted to write about my training regime in a bit more detail, but it’s been a little light for the last two days because of especially bad pain. I’m always in a lot of pain, mostly in my legs, but I can generally cope with it. But then it flares up very badly once or twice a month and things become a lot more difficult. The last three days have been days like those. Training has also been difficult because the stiffness/numbness in my hands each morning has been getting worse. I don’t know whether this is because my condition is spreading or whether I’m sleeping more heavily due to exercising more…. and simply lying on my hands or something, like a cat. But it has meant that I haven’t been able to start training as early as I’d like, which is making it harder to fit into the day.

Anyway, I’ve managed to keep to two hours a day training on the rolling road, although it’s been hell and I haven’t exactly broken any records. I’ve done enough to keep myself from stiffening up and to keep my heart at almost-but-not-quite-ready-to-explode levels of activity at various points throughout the day, which is what I believe the World Health Organisation recommends. I might be paraphrasing.

The other news is that I am almost ready to order a new wheelchair! Details are being finalised and I’ll write about them once they are. If all goes as planned, estimated delivery time will be mid-August.

I can’t see everything going as planned, though. Can you?

Equipped: wheelchair edition

This post is about wheelchairs, my first (and current) wheelchair in particular. I’ll write another post about other types of equipment you might need.

When I first started to rely on a wheelchair, there was nobody to give me advice. In fact, I hired a wheelchair to get to a hospital appointment because I knew I wouldn’t be able to handle the endless corridors. The consultant was surprised and asked where I’d got the chair. Naively, I thought he was surprised that I needed a chair at all and thought it bode well for his taking my condition seriously.

I now realise that he was surprised because the chair hadn’t been issued by the hospital. I’ve had a similar reaction from every consultant I’ve seen since; I should have been assessed and, since I obviously need a wheelchair, I should at the very least have been given advice about where to get one, what type to get and what funding might be available to help me.

I didn’t. But I forgive the NHS for this since it all happened at the height of the first COVID lockdown and the NHS was chaotic and fragmented. It meant, though, that I was on my own when it came to buying a wheelchair and I had no idea what I was doing. One of the reasons I started this blog was to document what I’ve learned, so this is what I learned about buying my first wheelchair.

It’s important to note that I’m still very new at this and I still have a lot to learn.

This is what I bought. It’s described as “Excel G-Explorer All Terrain, Lightweight, Folding, Manual Self Propelled Aluminium Wheelchair”, although it’s also available under other brands and names. It cost about £350. The first order of business was to take off the crappy orange panels. You might have different priorities. I also cut off the seatbelt because it was annoying.

The Excel G-Explorer is a perfectly fine wheelchair as far as I know. I haven’t tried any others in anger since I was eight. It meets my daily needs adequately and I doubt £350 would have bought me a significantly better chair. It comes with the off-road wheels pictured. My first piece of advice if you want to be active in your chair is to get both off-road and regular wheels. The off-road ones are great on mud, grass and (light) gravel and the tyres are difficult to puncture (needless to say, I managed it anyway) but they’re heavy and generate a lot of friction. When I bought a set of regular wheels, I wasn’t quite prepared for how much of a difference they’d make on floors and pavements. Get both, if you can afford it. I now use the regular wheels all the time, unless I’m likely to be on rough ground. Badass though the off-road wheels undoubtedly look, you’re going to need regular wheels too. And – at the time of writing – they are not easy to get.

This is actually an important point: manual wheelchair wheels are quick release and can be swapped over easily by anyone sufficiently able-bodied. But there are some issues to watch out for when you’re buying wheels that are far from obvious. I’ll be posting about this soon.

The things I complain most about are the footrests. They are flimsy, plastic things. They haven’t failed yet, but it seems only a matter of time.They’re also huge and they’re annoying and they’re constantly in the way, but that’s more to do with the design of this kind of footrest in general than with these particular ones. Better chairs have better footrests and I’ll discuss that in another post. I’m just saying that however good your imagination, you probably can’t imagine how annoying crappy footrests are.

Back support is… meagre. It’s a folding chair so the back is made of fabric like a director’s chair, stretched between two supports. This is fine when I’m out and about, but I spend a lot of time in the chair and while I use an additional back cushion for support, it’s not really adequate. If you’re going to spend considerable amounts of time in your chair, I suggest looking at something more expensive. Back support is one of my motivations (because “motivations” sounds nobler than “justifications”) for buying a better chair.

One further point is that this chair requires quite a lot of (very minor) maintenance. The bolts that hold on various non-vital parts such as the footrest straps and the catches that release the spars that hold the footrests are prone to working loose, falling off and getting lost. Yes, the footrests managed to find yet another way to confusticate me. Keeping the bolts tight is a trivial matter for me because I have enough mobility in my body and fingers, but others might find it difficult. Either way, buy some spare bolts because you’re likely to need them.

Apart from those issues, the chair is fine for daily use. I’d go so far as to recommend it, since it hasn’t let me down yet. But I don’t think it will stand up much longer to the grief I’m putting it through and I don’t think it’s suitable for half marathon distances. Here’s why.

My training regime involves a minimum of two hours full tilt on Rollo, my rolling road, in addition to any other exercise or activity I do that day. If I exercise outdoors, I do between three and a half and four and a half miles, depending on what route I take. The rolling road is more strenuous because I can work faster, but the outdoors is more demanding in other ways because of the poor condition of the pavement and especially the camber. The camber alone is worth another post, which I’ll do soon.

This is causing wear and tear because the chair is a regular folding one. It isn’t designed for the stress I’m putting it through. When I’m going flat out on the rolling road, I can feel it start to warp a little, especially when I’m working each wheel alternately.

Due to all this stress, one of the wheels has developed an annoying creak. I’ve traced this to the axle mounting: a slight warp – or perhaps some imperfect engineering – has caused a small misalignment of the axle with the mounting, so when the wheel spins, the retractable pins on the chair side that hold the axle in place are rubbing against the axle mounting, causing the creak. I know this isn’t very clear, but the specifics don’t matter: suffice to say, the stress of significant training is slowly damaging the chair. I expect the damage to be cumulative, so I need anew chair that’s built to handle that kind of punishment.

Besides, I’m sitting in this chair most of the day, when I’m working as well as when I’m exercising, socialising and often when I’m relaxing. I need something that’s more comfortable, better for my back, better able to take the stress of training and that looks cooler and more badass.

Next: what I’ve learned about buying a better wheelchair.

Who I am, how I came to be

As origin stories go, this one is a bit, uh, lame. I wasn’t bitten by a radioactive disabled person or anything. Well, I might have been, I’ve been bitten by a surprising number of people, but that probably wasn’t the cause of all this. “Probably”, though, as is close as we’re likely to get to an explanation because nobody knows, as yet, what happened.

In spring 2020, I noticed that my right leg was becoming unresponsive. I had trouble lifting it over the sill when I got into the car, for example, and I tired very easily, especially on stairs. I tried to convince myself that it was down to some particularly heavy boots I’d bought (pictured) but this was just ordinary human cowardice. I decided I really needed to go to the doctor when I fell down the steps on the way out of the opticians (even then I entertained the idea of blaming my new glasses) and had a very difficult stumble back to the car.

Badass but heavy boots, not to blame for mobility issues

The GP thought it might be a spinal disc herniation (a slipped disc in old money) which was pushing on my spinal chord. This was quite a difficult time because it was the height of the first COVID lockdown, the NHS was straining and in disarray and the only thing anyone could think of to do was send me for more and more MRI scans

This is how I choose to remember that time

This didn’t help much. Nobody was communicating so the results of the various MRIs weren’t building up a picture of what was happening to me. They showed that whatever was wrong, it definitely wasn’t a slipped disc. I don’t blame the NHS in the slightest for this; it had enough on its plate. But it was a frustrating and worrying time. In the meantime, the symptoms were getting worse. I had increasing difficulty walking and couldn’t manage steps at all. Getting out of chairs was very difficult, as was getting back into them. And my legs were very painful, all the time.

Eventually, it was decided that the problem was neurological. I suspect this was because they’d ruled out all the obvious things and this was what was left. I was referred to the neurology team at James Cook Hospital in Middlesbrough and was in and out of hospital for inconclusive tests.

This is where things stand. There’s definitely a problem with the nerves controlling my thigh muscles and this is very unlikely to get better. The nerves seem to have been damaged by something, but it’s anyone’s guess what. The smart money seems to be on an over-enthusiastic reaction by my immune system to a virus, but we’ll probably never know. The neuro team is “monitoring” the situation, but I think that’s code for “waiting to see if it gets worse.” What they’ll do if it does remains unclear. So far, I don’t think it has, although recently my hands have been numb in the morning, which worries me a great deal.

So here are my symptoms:

I can’t put any weight at all on my legs if even one of my knees is bent. If I do, down I go and no force on Earth can stop me. I can’t seem to learn to compensate for this at all, just not to bend my knees when there’s any weight on them. I can walk a little without bending my knees but it’s exhausting and I have great difficulty unless there’s something handy to grab hold of, even if I use a stick. Even slightly uneven ground is very difficult; my brain isn’t getting the information it needs to compensate. Stairs are impossible to walk up and down, but I can manage them through undignified shuffling. My balance has improved a lot through practice and training so my mobility around the house is much improved. I can get in and out of chairs more easily than I used to, having learned to compensate with other muscles, but if I can’t take most of the weight on my arms, then it’s not happening. I have to resort to crawling around on the floor until I can find something to climb up.

The pain in my legs is constant and very bad. I have extremely painful bouts of muscle spasm in my legs and sometimes other places which happen about twice a day, lasting for about an hour each time. I suspect these are partly a side-effect of medication and there’s some hope that it can be dealt with. Painkillers other than opiates don’t help and since an opium addiction would be marginally worse than the pain, I’m avoiding it for as long as I can. I’m taking nerve blockers, which seem to help a little bit (muscle spasms notwithstanding). I have a pain review meeting in August, but there aren’t really any that I know of. There are different types and doses to try, though, and injected rather than oral delivery if nothing else works. Hopefully the review meeting will be the start of a process and we can dial into a solution that works OK. I’m not expecting to ever be pain-free, but it would be nice to reduce it to a manageable level at least some of the time.

This is where things are and why I’m in a wheelchair most of the time. Next, I’ll write a bit about why I want to do wheelchair marathons and why I want to raise money for VAWG charities.

A regimen of sorts

I’m very tired today. And hurty. And I’m having a lot of painful muscle spasms in my legs. This is fairly normal for me, though, and I have to work through it. My starting regimen for training is… not very regimented. I’m doing two hours per day going as fast as I can on my rolling road, in sets of half an hour, on top of any other exercise I do.

This is a lot of exercise, but I’ve no idea whether it’s the right sort or intensity of exercise. I’m not measuring anything useful and I don’t know what I ought to be measuring anyway.

So that’s my training for today; two hours on the rolling road and then figuring out what I ought to be measuring and what my watch is able to measure.

To begin

I’m training for a wheelchair half marathon. If I can pull that off, I’ll go on to do more, and hopefully to do some full marathons. The point of this is to raise some money for charities that support women and girls who have suffered violence and abuse. The thing is, I’m new to all this. I’m new to disability, to being a wheelchair user and to distance wheelchairing (we need a better word for that. “Distance rolling” is presumably a different thing altogether, although it sounds like a great spectator sport). I’m new to fundraising in this day and age (we just used to go round with a piece of paper asking people to write down how much money they promised to give us if we did The Thing. Now it all seems more complicated.) And while I’m not new to serious training (I ran, did a lot of martial arts and played badminton fairly seriously), that was back before the old king died. I’m only just starting to get fit again.

So this is a blog about learning to do all those things. I need to learn what equipment I need, what training regimen I should follow, what times I can expect to achieve and, most importantly, I need to learn about raising money. I also need to know more about the charities and people I’m raising money for, so I can better help them. I need to learn what else I need to learn.

I’m assuming there might be others in the same boat; mid-life crisis people like me who want to get into distance… err…. wheeling(?) but don’t have fancy racing wheelchairs or belong to any wheelchair racing clubs. And people who want to raise money in this sporadic fashion. People like me who don’t really know where to begin. This blog is for those people. And for people who want to find out more about the violence and abuse that women face every single day in every country there is. People who want to find out what we can do about it.

So to begin, here is my extensive range of wheelchair marathon equipment.

This is my wheelchair. It was cheap. When I bought it, I wasn’t certain that I’d be in a chair forever, so I didn’t over-spend. In the future I might invest in a better chair, but I don’t even know what to look for or what constitutes ‘better’. I have the off-road wheels shown here and some nice, thin racing wheels (I won’t bore you with details of the tyres, even I’m not that obsessive.) There are some things I’d like to change. For example, the footrests are a constant annoyance and they and the front castors do not look sufficiently badass for my purposes. I might change those. I might get pushrims that are more grippy and a better shape. If I get really into distance…. pushing(?) I might even get a fancy racing chair. They look bloody uncomfortable, though, and how you get in and out of them is a complete mystery. They are also very expensive, so I’d have to get really, really, into endurance wheelchairing to justify that.

This is my rolling road. I call it Rollo, after the only king I will ever serve. I bought it from Invictus Active, who make them and sell other wheelchair stuff. This was not cheap, but it’s a good, well-engineered piece of kit and it means I can train indoors. I don’t have to explain how the thing works, it’s fairly self-explanatory, but I’ll write a lot here about the cons, pros and practicalities of using it every day. There’s lots of video about Rollo on the Invictus Active site if you’re curious.

These are my gloves. Actually, I have lots of different pairs of gloves and I’m not entirely happy with any of them. Either I tear then to shreds in no time or they strip the skin clean off that bit between the thumb and finger where it really bloody hurts. They also tend to get in the way of my watch, which is busy trying to measure my pulse. These ones are climbing gloves and are as sturdy as any I’ve come across, but not perfect. I’m always on the lookout for better ones.

And that’s it. That’s my kit. I expect it will change as I learn more. And if you have any suggestions, I’d really like to hear them.