Second lesson

I recovered pretty well from my first riding lesson. On day 1 I had sore muscles, but nothing too upsetting. On day 2, my muscles had settled down considerably, but my ME/CFS symptoms (sore throat, headache, etc) flared. But on day 3 I was back within normal parameters.

Today was my second lesson. There were good bits and bad bits.

Things started off well. I got onto the horse correctly and was led into the school. I was sitting much more comfortably, I was wearing different shoes and I think that helped my position. I remembered how to hold the reins, and I felt good and confident and totally ready to balance on top of Harvey as he went round and round the school.

Then I realised that, although the instructor (different instructor today) was going to be walking around with me, Harvey wasn't actually on a lead rein. I was supposed to be in charge of getting him to go and stop and turn.

In many ways this makes sense. A lot of how you're supposed to communicate with the horse about going and stopping and turning has to do with how you sit and conversely how you sit is going to be communicating with the horse. So it's a bit unfair and confusing and counter-productive for all concerned if the horse is being tugged left by the instructor when everything in the rider's body is saying Turn Right (and the newbie rider doesn't realise that's what she's doing). It's also about as safe as it could be - unlike cars, horses don't tend to crash into walls when you get something wrong.

However, all the sense in the world could not quell my rising sense of panic. I wanted to beg them to just let me get "sitting" nailed before I tried actual "riding". I was genuinely surprised when my pride and positivity managed to get in between my brain and my mouth, to morph the phrase "no! nooo! let me off! can't do it! don't wanna!" into "okay, absolutely, so what do I need to know?"

To my amazement, I did manage to persuade Harvey to start and stop and turn and change direction several times. But what we then experienced was a clash between my ability, and the principles of teaching.

Principles of teaching are to keep pushing the student to improve. Sit up straight - good! Now put your shoulders back - good! Now try and have your hands about the same width apart as his ears - good! But don't look at the horse, or at your hands, keep looking where you want to go - good! Let your hips move - good! Aim towards the H - use your outside leg - don't lean forwards...

My ability considered on a scale of 1-10 where 10 is my top performance, probably started at about a seven. I got on the horse, I warmed up a bit, my confidence grew, I got a few things right, and I was functioning at a ten! for ooh, maybe a minute and a half. The demands of the teacher increased. My brain was trying to handle more instructions. My body was getting tired. Gradually my ability dwindled to maybe a three. I was dizzy and not breathing well because I was holding my breath as I tried to follow all the instructions at once. We rounded another corner and I was trying so hard to remember which is my "outside leg" that my concentration on sitting up straight all but vanished, and whichever leg it was, the passable squeezes and kicks I was managing at the beginning of the lesson had turned into rather pathetic flops.

At this point Harvey quite reasonably decided that in the absence of a decent rider or a lead rein, he certainly wasn't going to be taking half-baked instructions from the weak and wobbly sack of jelly perched atop his saddle. His walk slowed to a meander and eventually stopped altogether. With the instructor, the supervisor, and the people who were there for the previous and next lessons all calling out words of encouragement, I got another few metres out of him, but by that point I was just burning with humiliation and wanted to not only slide off the horse, but continue right on into the ground.

Of course the ground doesn't work like that, and neither do horses. It's surprisingly difficult to fall off a large horse when you're sitting comfortably with a leg either side and he's standing still, and given a choice, I'd rather not cover my clothes in grubby sand/sawdust/whatever it is. My chair was still outside by the ramped mounting block and my walking stick was in my bag which was hanging on my chair, so I was sitting up there in front of the audience as I waited for someone to bring me one or the other and help me dismount.

I managed to get down more easily than last time, although I still needed help and was hardly elegant. As I joined the other students, a couple of them made sympathetic noises about how difficult it is when you're first learning... but this didn't help, as my tired and embarrassed brain, a hair's breadth away from bursting into tears with frustration and exhaustion, could only hear that people who'd watched my efforts had found me so utterly incompetent that they could only offer pity about just how awful I was. I paid and booked my next lesson as quickly as I could and then went and sat in the car park so that I wouldn't have to talk to anybody for the half-hour until my taxi arrived.

Of course after getting home and having a rest, a cup of tea, and a spot of lunch, I can acknowledge how ridiculous this was (I could sort of acknowledge it at the time but it didn't help). It's not the job of the other students to praise or encourage me, they were trying to be nice and I was behaving like a bit of a twit to run off and hide from the world. It was my second ever lesson, and I did about as well as anyone can be expected to on their second ever lesson. I can even - grudgingly - accept that I do have an illness with physical and cognitive components, and that my rapidly dwindling ability in the latter part of my lesson was to be expected and will probably happen again.

What would be useful is if any readers who've done/are doing horse riding could give me a clue how long I should persevere before I say "no, clearly I'm not cut out for this and should call it a day." When does it become fun rather than a confusing, exhausting struggle?

Riding for the Disabled

A few weeks ago, I decided to embark on a bit of an adventure. For ages I'd been trying to think of something new to do that would enable me to get out, get some exercise, meet people, but be in a safe environment and within my own abilities. Eventually I got in touch with the Riding for the Disabled Association and after a couple of false starts (many of the groups listed as being local to me were for children during term time only) I found that the nearest place for an unaffiliated disabled adult to try riding was at Lowlands Farm, in Warwickshire.

Steve took me there for an initial visit which made the whole idea seem a lot more realistic. I was able to propel myself around the site and all of the people were incredibly welcoming and friendly. I found myself really looking forward to giving it a try once the paperwork was complete (a sign-off from my doctor to confirm the basics of my condition, not too complicated, but it took a couple of weeks).

Meanwhile, I attended to watch another lesson. If I'd watched someone who knew what they were doing and had lessons X times a week trotting about being excellent on a horse, I probably would have just dropped the whole idea. I've no desire to compete, or even to excel. I don't want to own a horse or spend half my life hanging around stables. I am not really a horsey person. But instead, I was able to watch the lesson of a woman who appeared to be more or less on the same page as I was but a few months into the process. Benefiting from the stretch and the movement, her posture and muscle tone were improving. That was what I wanted to achieve and it made me even more impatient for my paperwork to come through.

Which brings us to yesterday morning and My First Riding Lesson.

First we got me kitted out with a helmet and then I rolled up the wheelie-accessible mounting block. This brought me alongside Harvey at a height that made it easy to sit on him. That was okay, I was all, hey, check me out, I'm sitting on a horse, how good is this?

Then the lady holding the lead rein started to take us away from the ramp and into the huge barn that is the riding school, and I realised just how high up I was sitting, on a moving animal, without any kind of grab rail. I didn't want to touch the reins in case I did something wrong, so I just gripped the saddle and prayed that we would stop soon. Thankfully we did come to a reassuring halt just inside the school and my instructor started adjusting bits of saddle so that I was sitting properly.

Of the next fifteen minutes, I just have a hazy recollection of going round and round the school trying to follow a thousand instructions at once while moving the whole time. I kept wanting to say look, I would be able to sit up/lean back/head up/hands here/feet there/etc if only I wasn't being jolted around on the back of this moving horse! A lot of the instructions made sense. For instance, it was actually more comfortable when I looked up and didn't lean forwards. But then she'd tell me to bang my heels into his sides and (even apart from the yes-I-know-it's-stupid fear that I would hurt the horse) I'd concentrate so hard on that, I would end up automatically looking down again at my feet/my hands/the horse/the instructor.

Nevertheless. There was an awful lot of support and positive reinforcement in with the continuous flow of instructions - it was a really good demonstration of how it's possible to push somebody in an encouraging way.

Getting off the horse was interesting, too. I couldn't get off the way I got on, with the horse alongside the great big ramped mounting block, because it's all metal and concrete and one wrong move could cause no end of trouble. Instead, one lady held Harvey still, while another stood on my right-hand side to help me swing my right leg up and over the back of the horse. My instructor was on the left-hand side and guided both my legs as I slid down to the floor, and then I stood still for a minute or two with my body against the horse, arms on his back, and the instructor supporting me from behind until the world stopped spinning. Hopefully as I gain a better idea of where I am and where the horse is, I'll be able to do that on my own.

Everyone warned me that I'd be sore the next day, but to be honest, it isn't too bad. I mean, I can feel it, certainly, especially in my back and my inner thighs, but I've woken up with worse pain and the regular ibuprofen that I take anyway seems to be holding it in check. I can still move as much as I usually can, and I've even managed to get a load of laundry done.

Next week's lesson is already booked, and I can't wait.

Restrictions Apply

Sometimes I find it quite difficult to use social media, as a disabled person. Not so much on a technical level, as on a privacy level. How much can I share with which people? How can I try to be sure no one gets the wrong end of the stick?

As a recipient of certain kinds of disability assistance I have to be aware that I may, at some point, be the subject of an investigation without my knowledge. That's not paranoia; the DWP quite openly advises that (over and above investigations of individuals reported as potential fraudsters) it regularly carries out checks on random samples of claimants. I'll be surprised if, in 2011, this doesn't include checking social media use.

I have nothing to hide. However, social media centres around succinct postings. Twitter is the extreme example at 140 characters, but even where there isn't a limit, it's not the done thing to leave a comment on someone else's blog that is 500 words long. How can I possibly fit in all the explanations and circumstances about how I manage to do something despite my limitations? Attitude plays a part as well. If I'm posting about having gone out somewhere with friends, my readers don't want to read, and I don't want to write, a post detailing which joints hurt and what kind of headache I had and how many times I had to stop and rest, that's just depressing!

My posts and tweets aren't earth-shatteringly important, but here's an example of what I mean:

What I want to tweet:
"Steve and I went for a nice walk round the block this evening."
What I feel I should tweet to avoid accusation:
"Steve pushed me in my wheelchair around the block this evening."

What I want to post:
"I had chicken primavera for dinner. Never had it before but it was really nice. It's chicken, pasta, mushrooms and veg in a creamy sauce."
What I feel I should be adding lest the DWP are watching:
"I had chicken primavera for dinner. It was a ready-made microwave meal because of the difficulties I would have with preparing such a meal from scratch. I had to sit down while the meal cooked. I ate the meal sitting at the kitchen counter because I was unable to carry it through to the main room without dropping it. The meal was only in my house in the first place thanks to the wonders of online shopping."

What I want to blog:
I went into town by myself! I bought X, Y and Z! I had cake! I feel very proud of myself!
What I feel I should add for the benefit of anti-fraud units:
It was the first time I left the house in a month without Steve right there next to me. I had difficulty getting a wheelchair-accessible taxi. I bought a coat in the sales but I could not try on any other clothes because I lacked the energy and co-ordination to safely get changed by myself in unfamiliar surroundings. My pain levels were high and the medication I took to relieve the pain had the side effect of making me feel very dizzy and sick. At one point I became lost despite the simple and familiar layout of the town centre. Despite purchasing and consuming a sugary snack in the hope of boosting my flagging energy, I was unable to accomplish all the tasks I had wanted to because I was too exhausted. Staff in the final shop I visited were concerned about how ill I looked. When I got home I had to nap on the sofa.

You see what I mean? The positive stuff is true. The negative stuff is true. They don't contradict each other if you know the full story, if you know me you can see how they mesh together. But if you were only reading one side of it, you'd think I was either fit as a fiddle, or the world's worst whinger.

I'd be interested to know how other disabled people manage to hit the balance between staying positive online, but not jeopardising their DLA.

Repeat

I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.

In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.

In summary:

• If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.


• If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.


• If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.


• If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).

Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:

• 7% were incapable of any work (Support group)


• 17% were able to do some sort of work given the correct support (Work-related activity group)


• 39% were deemed to be fit for work and were moved onto jobseeker's allowance


• 36% dropped out of the application process


• 1% of applications were still in progress

Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".

This is simply not true.

The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!

To apply to be assessed is not "faking".

To have a level of impairment that falls just short of the ESA bar is not "faking".

There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.

To recover from an illness or injury does not mean that the illness or injury was "faked".

There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.

To be too ill to fight is not "faking".

There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.

To return to the taxpaying workforce is not "faking".

A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.

To have alternative resources is not "faking".

Most significantly, there are those who die before the assessment phase is complete.

To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".


I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".

RAF Cosford

This weekend Steve and I did something completely not-wedding-related. We went to RAF Cosford, a RAF museum in Shropshire.

Getting there was an adventure in itself. We decided to invite our twitterfriend @gentlechaos along and offered to give her a lift. This meant fitting three adults and two wheelchairs, plus all the other "stuff" we were each bringing along for a daytrip, safely and legally and comfortably enough for a 25-mile journey, into a three-door fiat Punto. It was a little bit on the tricky side, but we managed really quite well.



We also met up with one of Steve's friends who was able to give me a few more photos from the wedding. That was great, but the best bit of it was going around in a group of four like that - two walking and two wheelchair users. It was a wonderfully normalising experience as it meant none of us were the odd one out.

Being an airfield, Cosford starts off ahead of the game on wheelchair access. It's a huge flattish self-contained area and the buildings are huge aircraft hangars with lovely smooth flat floors that are a positive delight to move along. However, to make it even better, they have a small fleet (possibly a fleetlet?) of mobility scooters and a few manual wheelchairs available for no charge. There's also no charge for entry, although there is a small car parking fee (even for blue badge holders) of £3 per car.

There's a brilliant hands-on area with lots of little gadgets and gizmos that demonstrate, and allow visitors to experiment with, the principles used in different types of aircraft. It's allegedly for kids, but most of the people playing with appreciating the demonstrative devices were 5ft or taller.

The Cold War exhibition is particularly striking, with aircraft suspended from the ceilings in a very dramatic (and slightly unnerving) fashion.

Like most museums, there's far too much information to absorb on a single visit, which is a shame because by the time we next go back I'll have probably forgotten most of what I did pick up. On the other hand, it means we'll be able to go back without it being repetitive or boring, even if the exhibits themselves haven't changed.

Wedding Venue: Stoneleigh Park

Apart from the date and the dress, the other big thing I didn't want to broadcast online until after the wedding was the venue.

In England, you can get married in a church, in a register office, or (since the 1990s) in "approved premises". Since neither I nor Steve have any religious beliefs, it would be disrespectful of us to get married in a church, not to mention meaningless. And there's no parking - not even blue badge parking - at the register office's "Ceremony Rooms", so approved premises it was. This has the other big advantage that you can have the ceremony and reception in the same place.

We had already decided that I would use my chair for as much of the day as possible, and of course there's always the chance that guests may have their own access requirements, so accessibility was important to us. I regret to say that most of the venues in our area either admitted outright that they could not provide proper wheelchair access, or simply didn't bother to respond to my queries. This took us from the choice of fifty-odd venues that a non-disabled bride would have, to a choice of about half a dozen.

Stoneleigh Park, also known as the National Agriculture Centre, is an absolutely unique venue. They've got all sorts of on-site facilities (4x4 offroading? Segways? Helicopter landing pads?) and different styles and sizes of room. Access, while far from perfect, is much better than at many of the other Approved Premises, but what really swung the decision was the attitude of the staff.

You see, there are plenty of wedding venues that hold perfectly "nice" weddings as long as you are having the wedding they want you to have. If you want a lovely ceremony and then reception drinks and then a mediocre yet formal sit-down three-course meal followed by speeches and a cheesy disco, they'll make it happen, but heaven forbid you suggest anything outside that template. They look at you like you've grown a second head or something.

Not Stoneleigh. I'm sure they could do that sort of wedding, and they'd probably make a perfectly good job of it, but it would be a wasted opportunity. They're used to holding Major Events. They're not primarily a hotel, or a golf club, or a village hall. They're a dedicated events venue accustomed to dealing with hundreds, thousands of guests at a time. This means that they aren't scared of doing something different. They pride themselves on flexibility. The only limits were (1) the laws of time and space, (2) the law of the land, (3) imagination and of course (4) money. Not as much money as you might think, though. I mean, they're not a budget option, but their quote was competitive with the hotels and golf clubs who were really offering much less for the money.

The Stoneleigh Park staff were absolutely awesome. My first point of contact was a woman called Rachel and she co-ordinated all the planning for rooms, facilities, liaising with our on-the-day suppliers, making sure we had all the right contracts and invoices, that sort of thing. Whenever I had a problem or a query I could go straight to her, and especially in the last few days when last-minute things popped up, she was wonderfully calm and capable at dealing with them.

The other main staff member we dealt with was a man called Mark who was in charge of our catering, and was our "on the day" co-ordinator. He worked closely with Rachel to be sure he knew what our plan was, and then on the day he oversaw events and, with his team, made sure the day went absolutely smoothly. Armed with a phone, a walkie-talkie, and a little golf-buggy type vehicle for zipping about the site from location to location, he anticipated everything. I haven't seen him in a single photo, yet somehow he was always there if we had a query and the answer to any query was usually "already being taken care of," which gave the day an almost dream-like quality.

There was not a single moment, from the initial enquiry to the post-wedding feedback enquiry, where Steve or I felt our wedding was receiving any less attention than the larger events hosted at Stoneleigh Park.

The level of privacy we had was wonderful, too. There was another event on-site that weekend (a scout camp) but the buildings, gardens, and other facilities we were using were for our private use and completely separate from anything else that was going on. We didn't have to fight town-centre car parking or put up with intrusion from pub regulars. We didn't have to schedule our food around other patrons of the restaurant or try and ignore the decorations from a playgroup. There was a handy on-site hotel, but our celebrations were in a completely different building. It was like having a tiny world set up entirely for the convenience of us and our wedding guests.

So we got our bouncy castle. We had a garden. We had comfy sofas. We had pictures by a lake. We had a cream tea. We had platters on tables rather than a buffet. We didn't need a seating plan. We were able to choose what drinks were served at the bar. Our estimated finish time of "erm, we'll have to see how it goes," was acceptable. They were completely unflappable and didn't say No to a single suggestion, although they often made suggestions that enhanced our ideas with the benefit of their experience, which was very welcome.

I really would recommend Stoneleigh Park as a venue to anyone planning a wedding.

Wedding: the Aftermath

There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:

• I do something active.


• I feel tired, often rather more tired than the activity warrants.


• I have a rest.


• I feel, not 100% better, but significantly improved.


• I carry on with my life.


• ... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.

The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.

First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.

We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.

My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.

That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.

One month on and things that are done include:

• We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.


• We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.


• I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.


• We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.


• We've had some of the photos back and have been able to print ourselves some copies to show people.


• We've given or posted all of the thank you notes.

We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.

I also need to do another blogpost or two about some of our vendors who really were exceptionally good.

Wedding: the party

This is me and Evilstevie enjoying our first hours of married life:


After the ceremony described in my previous post, we bundled into a car with our Official Photographer (Steve's cousin) and went to a more scenic part of the venue to take some nice, couple-y photos. I'd recommend this to anybody. It allowed us to have some time to just cuddle each other and marvel at the fact that we were actually married, rather than having to dive straight in to a busy mishmash of family politics and being congratulated for a ceremony we were still getting our heads around.

This took maybe half an hour or so, and then we headed over for the reception. I had decided ahead of time that I would walk for the ceremony but use the chair for the reception, and I think this was a good idea. Our reception room was advertised as accommodating up to 160 people. Our guest list was about 80 and about 75 came. It did look a little bit sparsely populated - especially as the summery weather saw a lot of people hanging around the outdoor areas - but it also meant that I had plenty of room for manoeuvring the chair, that parents didn't have to worry about where to put buggies, that strangers weren't sitting more or less on top of each other - all of which are good things. If I was doing it again, which I don't intend to do, and if I had a free choice of room sizes that met my other requirements, then I'd probably go for something nearer the "seats 120" capacity for an 80-person guest list.

The reception was going well when we arrived. Rather than a disco drowning out all hope of civilised conversation, we'd opted for quiet chill-out jazz and this worked really well.

We'd invited all the kids (mostly little boys between 2 and 10) to come dressed as pirates. The idea was that this way their parents wouldn't have to fork out for uncomfortable suits that would be ripped and outgrown within minutes. We'd hired a bouncy castle shaped like a pirate ship, complete with giant purple octopus overhanging the prow.

We also had heaps of chocolate coins/pirate treasure on every table, in lieu of favours...

... and our cake table had several chocolate pirates on the beach, alongside their enormous treasure chest.


We did have our Wii set up in one corner to entertain the kids in case of bad weather, or if the bouncy castle was too full. It was set to just scroll through a slideshow in the meanwhile. None of the kids even noticed it.

Lunch was an assortment of sandwiches, and scones with cream and jam. The venue caterers served these in large dishes to each table, a happy medium between the awkwardness of a buffet and the unwanted formality of a plated meal and seating plan. Obviously at this point Steve and I were both making our way around the tables, with the tragic result that I had to eat two scones. Just to be polite, obviously.

You can't put helium balloons and engineers in a room together without there being an effort to get something floating. At our wedding, this was one of the pirate ship table decorations...

... shortly followed by the Stunt Bride And Groom.


We only had one Stunt Bride and Groom which we really didn't want to lose, but we had plenty of table decorations. With this in mind, when a certain young lady begged for permission to take the floating pirate ship out and launch it... well obviously it's irresponsible and we couldn't endorse it, but we felt equally unable to say no. And it did look beautiful drifting off into the dusk.


Technically the bouncy castle was for children only, although at one point Evilstevie and I did, erm, pose on it for wedding portraits that may have had a slight bouncing element.

By the evening some people had left and others had changed into more comfortable, less formal clothes. At Jiva's suggestion, I too had a less formal outfit of black trousers and a white top to get changed into for the evening. This was another one of the Really Good Ideas. My dress wasn't uncomfortable to wear or difficult to manage as wedding dresses go, but it was more effort than my normal clothes and I was starting to get really quite tired. Also, dinner was bangers and mash with vegetables and gravy. Getting changed was definitely a good way forwards.

The bangers and mash had another effect we hadn't predicted. All those little pirates, who'd spent the day hopped up on sugar enjoying sunshine, a big grassy area to play on, and an unlimited-access bouncy castle, suddenly had bellies full of a nice solid hot dinner, and very nearly fell asleep on the spot. It was magic.

The last guests left a little while after 9pm. By that point I wasn't making sense any more, but I was very happy and had enjoyed the most wonderful day.

Wedding Ceremony

Evilstevie and I were married at noon on Saturday, 21 May, 2011.

The day was everything we wanted it to be. Our friends and families all made a big effort to ensure that the day was as relaxed and happy as it could possibly be.

I don't have any pictures yet. There are about 700 pictures on Evilstevie's camera but we haven't had a chance to go through them! The lovely Carie has put up a few of her shots which can be seen on her blogpost here (I'm afraid I can't link them as images).

What we do have, though, is the text of our vows. Evilstevie had gone to a lot of trouble setting up our home server to tweet the vows at the appropriate time (much like he did for the engagement proposal). Unfortunately, this was thwarted by our plan of having our Wii set up at the reception - on the morning of the wedding, in the hurry of extracting the TV, Wii, and associated cables from the heap of tech in the corner of our lounge, the cable connecting the server to the internet got dislodged, and although the script fired as planned, it had nowhere to fire to.

So, for internet friends, here are our wedding vows, and the reading a friend did afterwards. If you want the music as well, here's a YouTube link for my entrance music - Reunion by John Williams, from the AI: Artificial Intelligence soundtrack.

Evilstevie: I give you this ring as a sign of our marriage and a symbol of our love. I will always be there for you, to comfort and support you, and share in the joy and happiness of our love.
Cherish my faithfulness, my loyalty, and my trust, they are yours forever.

Mary: I give you this ring as a sign of our marriage and a symbol of our love. As we face the future together, I promise to be a companion worthy of your friendship. I promise to support your hopes, dreams, and goals. I vow to be there for you always.
When you fall, I will catch you.
When you cry, I will comfort you.
When you laugh, I will share your joy.
On this day, together with our friends and families, we can cherish the memories of our individual pasts, and create new ones, as, through our union, we accomplish more than we could alone.

Reading: A Lovely Love Story by Edward Monckton

The fierce Dinosaur was trapped inside his cage of ice. Although it was cold he was happy in there. It was, after all, HIS cage.
Then along came the Lovely Other Dinosaur.
The Lovely Other Dinosaur melted the Dinosaur's cage with kind words and loving thoughts.

'I like this Dinosaur,' thought the Lovely Other Dinosaur. 'Although he is fierce he is also tender and he is funny. He is also quite clever though I will not tell him this for now.'
'I like this Lovely Other Dinosaur,' thought the Dinosaur. 'She is beautiful and she is different and she smells so nice. She is also a free spirit which is a quality I much admire in a dinosaur.'

'But he can be so distant and so peculiar at times,' thought the Lovely Other Dinosaur. 'He is also overly fond of Things. Are all Dinosaurs so overly fond of Things?'
'But her mind skips from here to there so quickly,' thought the Dinosaur. 'She is also uncommonly keen on Shopping. Are all Lovely Other Dinosaurs so uncommonly keen on Shopping?'

'I will forgive his peculiarity and his concern for Things,' thought the Lovely Other Dinosaur. 'For they are part of what makes him a richly charactered individual.'
'I will forgive her skipping mind and her fondness for Shopping,' thought the Dinosaur. 'For she fills our life with beautiful thought and wonderful surprises. Besides, I am not unkeen on shopping either.'

Now the Dinosaur and the Lovely Other Dinosaur are old. Look at them.
Together they stand on the hill telling each other stories and feeling the warmth of the sun on their backs.
And that, my friends, is how it is with love. Let us all be Dinosaurs and Lovely Other Dinosaurs together.
For the sun is warm. And the world is a beautiful place.

Guestbook

The wedding looms ever closer. The craft-project chaos of my lounge is gradually turning into stacks of boxes with neat little contents-lists stuck to them, Evilstevie has confirmed his time off work, and really, everything's on track.

I keep telling myself, and anyone who has a tizzy at me, that the venue is booked and paid for, the registrar is booked and paid for, and we have the rings - therefore a wedding will take place. Everything else is fluff.

But fluff is fun, and today's fluff is the guestbook.

The guestbook isn't really a book. We're doing it in the form of lots of luggage labels, which our guests can write on or otherwise decorate as they see fit, and pin to a line at the reception.

I'd quite like to pre-populate the line, to get the ball rolling. So here's my idea. If any blog readers who aren't coming to the wedding would like to add a message to our wedding guestbook, then pop it in the comments, or email me, and I will be able to print it out and stick it to a label.

I know to new readers this may sound a bit "internet! validate me!" - no. If you don't feel you know us, or you've nothing to say, then there's no need to say anything. It just felt a little bit strange not to include the online side of our lives in our wedding day.

Oops

Should have seen this one coming, really.

For several years now I've been considered by Social Services to need help in the mornings, to get properly and safely washed, dressed, medicated and generally ready to face the day. We only took it up a few months ago (whole other story), and it has been working well and has made a very welcome difference to my life.

This morning my assistant arrived and rang the doorbell - some people have key safes but since I can usually get to the door one way or the other, we've chosen not to have one. Normally that's fine, but today, the Roomba was running. I did not hear the doorbell. I did not hear the doorbell again. I did not hear the knock on the door or the call through the letterbox. The blinds were all shut (unsurprisingly as I was not yet dressed). The poor woman ended up basically running around the house knocking on all the windows with increasing panic. Eventually she reached the one by which I was sitting, but by the time I'd levered myself up to crack the blinds and see who was knocking, she'd already run back round to the front of the house and was about to call base and ask them to ring me... she was extremely relieved when I opened the door.

We've decided that while the Roomba is a wonderful thing, it's best not run when I'm expecting my care calls.

Peeling petals

Gazing down the final straight towards w-day.

I was a bit panicky over the bank holidays - not about the getting married bit, just about the co-ordinating the wedding bit. I don't think the fuss and drama around the Royal wedding helped at all. I mean, on the one hand, I don't have to try and decorate the entirety of Westminster Abbey with actual real-life still-growing trees, on the other hand, I would love to have access to start decorating the venue a week beforehand and a couple of dozen helpers in hi-viz jackets.

Anyway. Since then, we've settled a lot of the accounts that we had so far only paid deposits on, and we've checked and re-checked the budget to make sure that we definitely have all the money we need for the few on-the-day costs, and having that all sorted out makes both of us feel a lot better. Wedding Zen is returning, and the to-do list is down to chasing the last handful of RSVPs and finishing off a few details.

One of these details is the petals. I had this absolutely terrific idea that a few petals might be a nice finishing touch to the room decoration. There are four options for this:

• Real petals, fresh, ripped off the heads of actual flowers shortly before the ceremony begins. This option was rejected because no one's going to want to dirty their wedding clothes by ripping up flowers that morning, and also the venue might get unhappy about juicy fresh vegetation getting crushed underfoot and then being left to rot.


• Real petals, dried, basically pot pourri. This option was rejected because they look manky.


• Fake petals, fabric. Wild variations in quality and quite expensive. There was also the consideration that the petals may get blown outdoors and the venue have asked us to be sure to only use biodegradable confetti.


• Fake petals, paper. Again, wild variations in quality, but biodegradable and also a bit cheaper than fabric.

All things considered, I decided to go with paper petals. I ordered them from eBay - about £10 for about 1,000 of them. They're lovely - the colours are pretty, the quality is terrific, they're proper three-dimensional petal shapes, it's exactly the look I wanted.

The only thing I didn't realise, and I'm posting this as a warning to other brides, is that paper petals... well, I'm not sure if it's how they're dyed or how they're cut or shaped or packaged or stored, but the fact is that the fibres are ever so slightly stuck together. It's like when you spill a drink on a book, and then when it dries, the fibres of the pages are slightly stuck. You can pull them apart quite easily, but it also has to be done with care to avoid tearing, and one page at a time.

Or in this case, one petal at a time.

1,000 of the damn things. The box is full of little bags, and each little bag has five compressed stacks of about 80 petals each.

What makes it even more fun is that, once separated, 160 petals is more than enough to completely fill a 2.6l tupperware box. Can't squash them down, that would defeat the object of having bought these nice three-dimensional-shape petals. So they have to be reassembled into stacks, uniform enough to minimise storage space, but also loose enough to ensure that the paper fibres don't meld again.

I'm about three-quarters of the way through, but it is taking FOREVER.

It is possible

Today is Blogging Against Disablism Day 2011, hosted once again at Diary Of A Goldfish - and many thanks to her for this.

Last year I was in the early stages of wedding planning, and meeting with barriers, discrimination and disablism every step of the way, so my post, It's Not Bridezilla To Want Access, detailed a few of the difficulties I was running up against.

This year... well, the wedding is this month and I can't really think about much else. So this is a short, wedding-focused post. You'll forgive me for not posting the exact date, time and location online until after the fact.

I am pleased to be able to report that we have, after a great deal of time and effort, managed to find sensible, flexible suppliers for everything we needed and wanted. The registrars have agreed that it's not necessary to ask us or our guests to stand during the ceremony. The venue rep has been awesome about communicating mainly via email as this is easiest for me. We went out of area and found a couple of accessible dress shops who eagerly helped me to try and find the perfect dress. A lovely family business who deal mainly with repairs and alterations to leather motorbike clothing have created me a beautiful pair of ivory wheelchair gloves with padded leather palms, that are both practical and feminine. A terrific Folksy seller has created our flowers, including an extremely custom corsage for me to wear on my wrist for the ceremony, that is also the perfect shape and size to adorn the controls for my wheelchair during the reception.

The triumph is bittersweet. I really do feel that I should have been able to expect businesses to be accessible. I feel that, in 2011, I should be able to make my decisions based on things like cost, quality, and attractiveness of product, rather than on which businesses were willing to have me as a customer.

All that aside though - I'm getting married. I'm disabled, I'm overweight, I have bad skin, small boobs, and terrible posture, I wear glasses, I have extremely low earning potential, and later this month I am marrying a man who was entirely uninterested in the amorous advances of at least two of the non-disabled guests attending. As a couple that faces disablism (because yes, it affects him too) every day of our lives, we have managed to put together what promises to be a wonderful, enjoyable, accessible wedding ceremony and a relaxed, personal reception party. I believe as a society we CAN get past disablism.

Deserving

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:

The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".

No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:

"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."

Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

Oh but it's easy!

Anyone who's ever so much as hovered on the fringes of wedding planning will have seen one of these articles. Shocking rise in the cost of the average wedding, picture of tasteless pink bride standing next to cake the size of a respectable starter home, reassurance that it doesn't have to be that way, followed by awesome photographs of a stunning wedding and reception that, according to the bride (I'm afraid it is usually the bride) involved, cost less than £500 and a marvellous day was had by all.

Great! you think, and start reading through for hints and tips. And then you start to realise that what she actually means is that the wedding expenses that were significant enough to be counted only cost her and her husband £500, and she either hasn't realised the cash value of other people's contributions, or she's choosing not to count them in a bid to gain moral high ground on the basis of frugality.

You realise that the wedding was conducted by Uncle John the vicar, who was able to waive all fees from venue hire to bell ringers, and jolly the Church Ladies into making that week's floral decorations in the preferred wedding colours.

You find that the dress (normal shop price: about £800) was made by the bride's ex-housemate who just happens to be a wedding dress designer/seamstress, that the fabulous cake (normal shop price: about £400) was donated by Auntie Linda who just happens to be a baker and decorator of wedding cakes, and that the food (normal shop price about £20 per head) is being provided free of charge by the groom's parents who just happen to own a catering business. A cousin who's on a hairdressing course, an uncle with a posh or classic car, and a friend-of-a-friend who's just setting up in the DJ business are optional.

You are told that "it's easy" to make your own invitations and place cards and so on for a modest outlay of about £50. Assuming, of course, that you have already invested several hundred pounds in a decent trimmer and a selection of corner punches, a proper craft knife and cutting board, a decent printer, endless accessories like glue dots, pritt stick, and backing card - and assuming that you possess a certain degree of design aptitude.

Next you discover that the amazing photos were taken by a professional. The fact that a decent professional photographer will often charge a three or even four-figure sum for shooting a wedding isn't mentioned - the photographer was either another person the couple just happened to know who owed them a massive favour, or he was hired by the families as a gift.

Yes, it turns out that the way to have a wonderful wedding on a budget is to be surrounded by generous, interested family and friends who are already (a) professionals in wedding-related industries, (b) incredibly creative, and/or (c) prepared to spend their own money so that you don't have to. Easy! Erm...

We're spending money on professionals to take care of certain aspects of our wedding. This is not a moral issue.

We're definitely looking forward to getting married, and to having the party with our nearest and dearest, but I think we'll also be glad to escape from the insane and contradictory world of wedding planning.

Naidex

Following on from my last post, I carried on in the bit-under-the-weather vein for a few days and met with repeated frustration on the balloon-quest and several other things I wanted to push forwards with. It wasn't a great week.

Nevertheless, some wonderfully good things happened - we started to get RSVPs from wedding guests, and Pip has got a decent job that actually uses his skills and qualifications, and Steve had a much-needed full weekend away with a friend. I was able to get quite a bit of rest in, and then on Tuesday, I just turned into an incredible luck magnet.

The first thing that happened on Tuesday, was that I managed to book a new balloon decoration firm.

The second wonderful thing happened - Shopmobility had received my innertubes and my wheels were fitted and ready to collect.

The third wonderful thing was that the ever-lovely Carie, ably assisted by the charming Miss Kitty, gave me a lift into town to collect the wheels. While we were about it we had a spot of lunch and cooed over lovely little baby-hats. This seems to me like a marvellous way to spend a lunchtime.

I should have bought a lottery ticket at that point, but I had to go home and recharge my batteries, physical and metaphorical, so that I would be able to thoroughly enjoy my trip to Naidex the next day.

My PA picked me up bright and early in the morning and we managed to get to the NEC with only one minor burst of getting lost (the NEC is so well signposted that several roundabouts actually have more than one exit marked as "NEC" which is generous, I'm sure, but ultimately not helpful for navigation purposes). My Blue Badge was checked and we were ushered through to the disabled parking hangar, and from there on in... it was weird. But in a good way.

I've never been to a crip-centric event before and suddenly there were these three huge halls full of companies wanting to sell me stuff. Not to prescribe like NHS/Social Services/AtW and other 'official' groups do, and not to find a way of adapting their existing product or service to find a halfway point like shops do. But to actually sell. It wasn't all or even mostly wheelchair users, but everything was accessible and there were enough of us that it felt entirely normal to be at seated height (usually I feel a bit like I'm trying to navigate a foreign world made up of steps and buttocks). I also saw at least one other person with the e-motion m15s, which was nice and made up for the man who perhaps didn't realise how loudly he was saying "f---ing show-off with fancy wheels grumblegrumble etc."

There's some wonderful inventions out there. A few of my favourites were:

• A small phone, too small to be much use as a general phone, but that wasn't what it was for - it had just two buttons to be preprogrammed with emergency numbers and was small and light enough to be worn as a wristwatch (it also tells the time). Infinitely preferable to those emergency-button lanyards that reside uselessly on the bedside tables of elderly people up and down the country.


• Adjustable height kitchen worktops, so that a prep space, sink, or hob can be raised or lowered at whim enabling one kitchen to be usable for multiple people with different needs in the same household - like a woman who wants to sit down and a man who's tall and dislikes having to stoop all the time.


• SafeSpaces, which are basically like indoor tents. Designed with autistic kids in mind, they create a small, manageable, safe place for sleep and timeouts. They're soft, waterproof, wipe-clean, with low beds, and they're anchored to the floor 10 inches from the walls of the room so that the user can't hurt themselves. Inside, there's all sorts of sensory therapy stuff, and it was so soothing... I sort of wanted one myself!

Then there was all the tried-and-tested stuff - mobility scooters, wheelchairs, lifts, ramps - and I remember being thrilled to spot grab rails in a whole rainbow of colours rather than just boring clinical white/dark blue.

A number of Twitterers had been planning to go, and although due to the harsh realities of spooniedom some people couldn't make it, I was pleased to meet up with @GentleChaos and @FunkyFairy22 at lunchtime. My PA, although employed directly by me, has been involved with Social Services for several years, so we decided that she would go and say hello to a few familiar faces in the halls while the three of us chatted. It was marvellous, we thoroughly put the world to rights. It's been years since I met new "internet people", particularly on my own, and particularly meeting females, rather than being one of a couple of incidental females in a male-dominated group. I'd like to do it more often.

Unfortunately on the Thursday morning I woke up with no spoons (expected) and an absolutely stinking cold (wasn't quite prepared for that). Each is making the other that bit more unpleasant. However, once I've shifted the cold and can breathe through my nose again, we should be full steam ahead for the wedding!

slow progress

I was hoping to be able to bounce in here with a post saying that, after all the things which went wrong on Wednesday, everything was back on track and totally fluffy.

Perhaps unsurprisingly, that's not the case. But things are slowly and steadily turning back to positive.

On Thursday morning I got a lift to Shopmobility, who are the nearest vendors trained and approved to carry out work on e-motion wheels. They took the tyre off and showed me the state of the inner-tube (I felt quite embarrassed) and they've ordered in new ones for me. Several friends encouraged me to try bike shops, or order online and do my own inner-tube replacements, but I'm not that keen to invalidate the warranty and insurance just to see if I can save £2 or get it done a day sooner - besides, Shopmobility schemes are worth supporting. I should be whizzing around again some time next week.

A big thing that went well is that I managed to get some affordable coloured envelopes online (from Ideal Envelopes, if anyone's wondering). I ordered them late Wednesday night, they arrived on Friday morning. I spent much of Friday writing out addresses in my Very Best Good Handwriting, and by the time Steve and I went to bed, all but one of them (waiting on a new address) was stamped, sealed, and ready to go. There was a little pang of frustration when I remembered I couldn't just trundle out to the post office with Steve (he's hurt his back and can't push the manual wheelchair either) but instead we drove around to several different post offices until we found one with wobbling-distance parking outside. UK envelopes in the box, overseas envelopes weighed and stamped for airmail by the post office clerk, and then as we went back to the car, a Royal Mail van pulled up to collect. So hopefully soon we'll start getting RSVPs!

Meanwhile, friends on Twitter and on other forums have provided a number of balloon company recommendations, so I've been phoning and emailing to try and get more quotes, and have booked an appointment to see one company next week. Hopefully I'll get something sorted out fairly soon and then everything weddingy will be right back on schedule.

Unfortunately I'm having the sort of day where being a passenger on a drive to a post office this morning wore me right out for the day - I spent most of the afternoon asleep and I'm still in bed typing this. It is therefore with a slight feeling of shame and a huge amount of gratitude that I say thank you to the protesters who marched in London today, including several of the Where's The Benefit posse. I only hope that a difference can still be made. As DavidG put it:

It’s quite simple, Mr. Milliband, we want an alternative strategy. If cuts must be made, we don’t want them to be targeted at those least able to bear them. And that is where the Labour Party is failing us. It was a Labour government that introduced ESA and ATOS screening, it was the Labour government that stood hand in hand with the Heil, the Scum and the Vexpress in demonising those of us on IB and ESA as fraudulent scroungers and under your leadership it is the Labour Party in opposition that is still supporting those policies.

People who voted for the Conservatives knew exactly what kind of ideology they were voting for and are probably very pleased about the cuts that are being made to services for poor people, disabled people, disadvantaged people, young people, and People Who Simply Aren't Our Sort Of People, but let's not pretend that Labour were or would be any better. Our political system is supposed to provide a formal means of opposition within the political system and I think the biggest motivating factor in all these protests is that meaningful opposition, carried out on our behalf by those who are supposed to represent us, is failing to take place as MPs scramble for a slice of the power pie and focus on relaxing the rules and increasing the spend on their own benefits.

Stuff going wrong

As you can probably tell from the sparse posting, I'm not doing amazingly well at the moment.

Despite that, today was a gloriously sunny day, and I went into town fully intending to make the most of it. I had a lovely picnic lunch by the river in the park, then I went into town, planning to drop in on the shop that we had booked to do our balloon decorations for the wedding, because I figured they were a likely candidate to have some other party supplies I wanted.

They didn't.

I know they didn't, because when I rolled up to the shop, there was a big "To Let" sign over the door, and the windows were soaped over, and when I found a gap to squint through, the shop was completely empty apart from a couple of cardboard boxes. Their website had been taken offline, and their phone number just rang and rang and rang.

I can only assume they've gone bust. It's late March. The wedding is in May. I wonder if or when they were going to tell me.

So, if anyone can recommend a balloon decoration firm in the Warwickshire/West Midlands area, reasonably priced, who might still have availability for a Saturday in May, that would be helpful. Yes, I can JFGI, but I thought I'd ask for personal recommendations first.

I had a semi-fruitful search for the additional party supplies I was looking for - as in, I found some, but they were quite a bit more expensive than I could justify. Scratch that idea.

I got a cup of tea, which helped, and then started to make my way back to the other end of town to be picked up, and that was when I realised that one of my Awesome Wheels had a flat. Happily, since I was being picked up anyway, I was rescued within the hour - unhappily it's a real flat, pump it up and you can hear the air hissing out, rather than just a bit of a drop in pressure. Tomorrow I'm off to see the chaps at Leamington Shopmobility to find out how much it will cost to sort out.

I'm trying to focus on the positive - I had my lunch in the sun by the river, I did get rescued, Shopmobility will be able to get me mobile again one way or the other, and at least I found out about the balloon place now rather than in six weeks' time - but it does feel like it's been rather a crappy day.

Census 2011

About a week ago, the 2011 UK Census dropped through our door along with more or less every other door in the country.

The instructions on the front require people to fill in the questionnaire on or as soon as possible after 27th March 2011.

This is probably why the letters page of the Times on the 9th March carried indignant missives from people complaining that they'd filled in the form already and attempted to post it back but couldn't fit it in the postbox (I'd link but it was a paper copy of the Times that I'd picked up in a McDonalds in Norwich). I think that if we applied DWP form-filling rules and charged every household who couldn't follow that instruction £50, we'd have a chunk off the deficit in no time or at least be able to fund an adult education programme in English Reading and Comprehension.

The other bit which makes me smile is the indignation about a thirty-two page form!!!!! which is considered by many members of 'alarm clock Britain' to be an astonishing amount of difficult and time consuming paperwork, while us filthy disableds are going "only 32 pages, sweet!"

Better yet, once you're past the opening questions about "how many people live here" and "list their names", there's only four pages per person and most of that is tick boxes. I can't imagine it taking anyone more than five minutes unless they live in a house full of people who are unable to fill out the form on their own behalf, in which case we'll call it half an hour but that includes finding a biro that works.

Finally, I'd like to encourage all my readers to take the advice of the excellent @Scaryduck on the thorny issue of Question 17.

Brave vs Stupid

IF you have a painful injury or condition which manifests itself by way of inflammation...

... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.

Take the freaking ibuprofen already.

It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.

If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.

Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.

It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.

Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.

Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".

And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!

I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.