There’s them that has come off, and them that’s going to…

So, last night at about sevenish I decided to get on the bike and go for a quick pootle over to the supermarket, to get some frivolous stuff I wanted (Pies, nail varnish, light bulb) but mostly just to get a bit of tame bike experience on the ring road.

I got on, got out of my street (putter putter putter went the bike, failing to start half a dozen times no matter what I did with the choke), crossed the first junction, then turned onto the ringroad. So far, so good.

Now. to explain what happened next, I need to give you a bit of geography. The supermarket is built in such a way that you can only approach it from a slip-road on one side of the carriageway, and if you’re coming from the opposite direction (as I was) you have to pass it, go all the way around a fairly large roundabout where two of the major thoroughfares between the nearest cities meet, then quite quickly get up to the national speed limit, then back down and off onto a sliproad which suddenly turns at ninety degrees, drops down to fifteen miles an hour, and takes in a vista of vicious speed-bumps.

As I was heading up the dual carriageway, I opened the throttle all the way. And there it stuck.

I can only sensibly describe the feeling as being like being on a horse as it bolts, but without the cheering knowledge that a horse will avoid obstacles and eventually slow down of its own accord.

With the lights thankfully on my side, I hit the roundabout at fifty-five miles an hour, and only managed to avoid ending up under an HGV by locking the steering and getting my knee down, scraping the hell out of my leathers. I pulled in the clutch – Meaning that I was freewheeling, as the engine revved dangerously fast under me – and leaned down the slip-road. At this point, I was still going too fast, and didn’t have the option of engine braking or shifting down a gear, so I had to feather my brakes. Whilst going around two fairly sharp right-angle turns, in opposite directions. This resulted in the back and front ends alternating between which one was trying to fly over my head and which one was trying to slide off into the ditch.

By the time I got near to the front of the car park, where traffic was building up, I ran out of options. I switched off the engine with the keys, hammered on both sets of brakes, and dropped the bike on its side, crushing my leg in the process but saving it from riding up the arse of an X-Trail. The bike the proceeded to spin a little bit, mangling my leg even further, before I got it to stop, hauled it back onto its wheels, and dragged it to the disabled bay.

I locked up, went to the security desk and explained what I thought was patently obvious; Here was my blue badge, there was no room to fit it on the bike, but I was entitled to use the disabled bay and obviously couldn’t walk very far. Please don’t fine me £70 like the signs say you might.

The response was one of beauty and compassion; “Sorry, can’t help, you’ll just have to go out and push it around onto one of the pedstrian walkways.”

So I walked back out to my bike, with no stick to support me because there wasn’t room for one on the bike, squatted down to unlock it again, pushed all 140 kilos of it over to the walkway, sat back down again to lock it, which took a while because the lock is slightly faulty, then walked back into the shop, wherein I nearly fainted.

I managed to get into a manual chair as-provided by the shop (And I can only assume that whoever provided them had never used one, since the action of the wheels on the floor charged up the chair and user with static electricity, meaning that touching the metal shelves, lift buttons and freezer handles resulted in big enough static shocks to leave my hands twitching for longer than was comfortable) and got my groceries. Other than one of the shop assistants not understanding that “Just really, really unlucky” was a cue to stop talking to me about my wheelchair-using-ness (“Oh, I just thought maybe you’d been in an accident. But you’ve not been in an accident. Haha. I thought you’d been in an accident.”) things went pretty well.

I got out, loaded up, got back on the bike, thinking that the prior problem might have just been a fluke… And as soon as I started the engine it started revving madly, regardless of what I did. By the time I’d got as far as the main road out of the car park, the bike was red-hot and felt like a danger just to be near. I put it into neutral, turned it off, and rolled it back to the walkway and locked it up.

Several phone calls later, and a friend with a van was on his way to collect me and the bike, which would take about an hour. It was at this point that I started really shaking and feeling terrible. Not only was I cold, and sore, and stuck in a supermarket, but I’d nearly gone under the wheels of an HGV and my bike had developed a fault that was frankly about as dangerous as a mechanical fault could get. As I played back through my journey in my head (an attempt at working out exactly when and how the fault occurred), I noted quite how close to a serious accident I’d been, and how often (Four times, which was basically four too many). I nipped back into the shop, bought a quarter-bottle of cheap vodka, and sat down next to my bike and sipped it to try to steady my nerves. Eventually, a helpful bystander brought me a bottle of water.

About two hours later, once I was well and truly frozen to my seat, and it had gone dark,and gangs of kids had turned up around the car park, the van arrived. Enlisting the help of some of the kids to help to get the bike up the ramp into the van, I got home safely, was greeted with a reminder that this was just another manifestation of how everything I touch turns to shit, then took as many drugs as I could hold and went to sleep.

Today I feel pretty fucking horrible.

Personal Budgets, or, “What do you mean, free holiday?”

Sigh. There’s much ranting and rambling in the press about the NHS’s application of personal budgets at the moment. I’m not a clinician, and I’m not an economist, so I can’t say for certain what the outcomes on both fronts will be, but here’s a couple of bullet points to chew on before spewing bile all over the keyboard about them;

– Anything that is prescribed is being prescribed by the same NHS doctors that are reluctant to so much as book a patient time in the hydrotherapy pool. Can you imagine these people being flash with money for the sake of it?

– No, people aren’t being prescribed “holidays” because “the pills aren’t working, no pill can cure an unhealthy lifestyle”. The majority of disabled and chronically ill people are just unlucky. No amount of healthy living will cure EDS, or CP, or CFS/ME, or arthritis, or regrow an amputated limb. No amount of cheerful thinking will fix depression, and no amount of generic “being better” will fix serious back pain, since those are the two conditions that keep being mentioned by the Angry Foamies. You know what does help? Pills. You know what can work well as a complement to the pills? Exercise, or a change of scenery, or clothes that don’t hurt to wear, or a bit of space that isn’t chaotic to go and sit in.

– No, it shouldn’t “be the patient’s responsibility, all the doctors should do is give them drugs” because fifty years ago, it wasn’t a doctors’ job to fit grab-rails in patients’ toilets, but nobody complains now when the NHS routinely does this, a hundred years ago it wasn’t a doctors’ job to give people talking therapies, that was the priest’s job, but only a few retrograde tossers complain now when people get CBT and other mental health support on the NHS. A few hundred before that, and it wasn’t the doctors’ job to operate, that was the barber-surgeon’s job, the doctor just gave you a bolus, but nobody complains now that you get your medication and your operations from broadly the same organisation. The degree to which doctors meddle in their patients’ lives is open to change, and a change as basically-benevolent as “We can provide you with things that make life easier” is one that we should be embracing, within reason.

The key thing to ask is; “When people say that all of this money could be going to fund children’s heart surgery; Will it really go to fund children’s heart surgery if this initiative is dropped, or will it go to pad out an executive’s bonus?”

The ones that people are really maligning for some reason are the following;

– A summerhouse and/or a shed; Seriously, do you know how difficult it is to maintain sleep hygiene when you’re housebound? Give someone a nice summerhouse to go and sit in during the day, and they will get plenty of sunlight, stop working from their bed, and save the NHS thousands of pounds in years of sleep clinics and medication. Some people need the drugs, some people just need the dedicated sleep space. It’s cheaper in the long run to try the shed before forking out tens of thousands of pounds on a sleep study.

– New clothes; Well, funnily enough, disabled people are often really, really poor. Sometimes poor enough that the thing between us and leaving-the-house is literally not having any suitable clothing (I hit that point last year, before my benefits came in. I had no un-holed T-shirts, so was too ashamed to go anywhere other than the doctors’ or the pool. In the time between then, and getting new clothes, I basically lost the ability to go out independently, through lack of use). Sometimes clothes which someone bought before they became disabled are unsutable now that they’re disabled, but they can’t afford to replace them – I know enough people who can’t wear tight jeans anymore, either because of the fabric rubbing their skin raw, or the cut not being crooked enough to wear for extended periods sitting in a wheelchair. Likewise, over-the-head shirts are impossible to put on if you’ve acquired an arm disability that stops you raising your shoulders. It makes sense for the NHS to buy people clothes, even if it’s just so that they can get to physio appointments.

– A trip in a pedalo; Good for the body and good for the mind, it’s exercise, it’s sociable, it’s probably a bit of relief for both the patient and probably their carer (Also if the carer is a friend, it’s probably nice to go and do something together where they’re able to just have fun, rather than Being A Carer). It’s probably cheaper than paying for respite care, or for paying for an actual paid carer (Hey, where’d that ILF go?) or for the amount of physio sessions equivalent to the amount of pedalling done.

– Horse riding; The same as the pedalo, but plus the morale boost of being around animals.

– A Wii Fit; Improves the efficiency of any other physio sessions, because it’s easier to get someone to comply with a fitness regime in their own living room than to get them to go to the gym every night (I say, twitching like an addict because the pool is closed for rrefurbishments for the next week). Cheaper in the long run to spend a hundred quid on fitness games than to keep someone in physio for months, or to do bariatric surgery, or to pick up the pieces in accident and emergency.

– A sat-nav; Honestly, for someone with a mental illness that wrecks their confidence in leaving the house, a sat-nav can be the difference between being housebound and being able to travel, including that favourite of the Daily Mail, to be able to get to work.

– Music lessons; When you remember that music lessons are used as speech therapy and to help with childhood asthma (How better to teach someone how to control their breathing, than to give them a harmonica or a flute?) and have pretty good compliance rates as compared to basically all other breathing exercises, this makes a lot of sense. Plus, again, mental health, improved coordination, improved hand strength, probably improved posture depending on the instrument. Cheaper than therapy and surgery.

– Massages; If you can’t immediately see why massages might help someone who has tremors, or cramps, or spasms, or muscle wasting, or any number of painful, movement-limiting and life-limiting problems, you probably need to go and have a massage.

– Aromatherapy and acupuncture and all that bollocks; I know, I don’t personally like it, and I don’t think it should be provided as a treatment for anything on the NHS, because, well, it’s not medicine. But if it’s bracketed with the horse-riding and the pedaloes as “This is something which, although not directly helpful, you personally have told us that you find relaxing, and being relaxed makes you better able to manage your own condition, then go for it.” then, well, go for it. I don’t think it should be pushed on patients (But then again, I don’t think that patients should be pushed to go horse-riding or to get massages either) but if they ask for it, and they and their doctor think that their rationale is sound and based in evidence (“I know that acupuncture won’t rebalance my qi, but I really like the feeling of being fussed over and touched and gently hurt, it’s incredibly calming and makes all the treatment easier to bear…”) there’s no harm done.

Love is in the air.

Today haws been a win.

Other than one wrecked hip, one wrecked shoulder, and a rolling migraine that felt like having an icepick rammed into my eye socket but without the soothing lobotomy, today has been fabulous. Borrowed a friend with a van, and made the four-hour round-trip to pick up Brrrm from the other side of the Pennines.

Got home, refuelled myself, then after a few minutes of oohing and aahing at Brrrm with the Downhill Neighbour, I went for a quick five-minute pootle around the village. I followed the route of the bus, which circles the village before going into town, then instead of going into town went up to the garage and refuelled the bike as well – Five pounds to fill the tank, over the reserve. At that point, it started raining, so I turned around and headed home. Not a long ride, half a dozen miles at most and none of it over 30mph, but it felt good to be out. The GZ125 is, as I’ve mentioned, slow and squidgy, and this one seems to want to be in third gear to go at twenty miles an hour. But I’ve mastered the stalling-at-every-stop thing, and I no longer insist on slowing to an absolute crawl at the slightest bend in the road, so I think I’m on the right track. And more to the point, sitting on it is comfortable. Like, the posture that the seat encourages – Arms relaxed, shoulders back, knees apart, feet straight and supported from the soles – is actively good for me. Add to that the sudden blast of fresh air and being genuinely on my own with my thoughts was invigorating. One of the things I really miss are my long walks – Before I got ill I would do my long walks, ten to twenty miles at a time, always just setting off from my house, or a friend’s house, or just deciding to walk home from whatever far-flung point I was at. Preferably in the cold, on the kind of day that’s got a low, white sky and still air and the promise of snow. They were my time to think – To just let the body deal with itself (one foot, then the other foot, nice long strides that take no energy at a pace that I could keep up for days) whilst I let my mind run wild, solve whatever problems I had, write reams of prose, soak in the surroundings and just generally exist without anyone bothering me. And now this has opened up the possibility of feeling like that again.

I got off the bike and felt more awake than when I’d got on it.

Tomorrow, I have grand plans – Maybe do a short stint at work, then go out into the hills for a bit to take photos of sheep. Or cows, maybe. I saw an amazing belted galloway calf, About two foot tall and for some reason in a field full of full-grown anguses, so might try to find him again. Also, further away there was a field full of cows (friesians, I think – Black and white and ddairy, anyway) in orange high-vis vests, which was a special kind of special. I know it’s practical, but the poor beasts looked so undignified.

And now I can just go out and see where the road takes me. A sensible trip might be to the local biker cafe, where if nothing else, I can basically guarantee someone to put the bike back together if it comes to bits, and also where I can get something to eat mid-journey without being looked at askance for being in leathers.

Here’s to enthusiasm.