20/52 2018

Week 20
14 - 20 May



Jamie's imaginative play is really starting to develop. Sometimes it's these pirates tangled up in the rigging of their ship, sometimes it's soft toys, sometimes it's vehicles... He narrates little scenes with them, and while I can only decipher about half of what he says, the gist is there. Sometimes I recognise it as an interpretation of a thing that really happened, or a scenario from a book or one of his videos, other times I have no idea where it's sprung from. It is both adorable and deeply encouraging to watch.

17/52 2018

Week 17
23 - 29 April



This is Jamie asleep in our bed, having got up but then dozed off again during his morning mama milk. I'm so proud of him as he grows up, but it's also lovely to still get these glimpses of the baby, in these moments of pure contentment.

08/52 2018

Week 8
19 - 25 February



Jamie isn't quite as interested in going out in the yard as he was last year. I don't know why - it could be the weather, it could be that he has more interesting indoor toys now, it could just be that he now has the capacity to give a clear verbal refusal and tell me what he would prefer to do. But this week, we went out in the yard, and we tidied the plant pots, and we did experimenting with the ice on top of the bucket, and we pulled out the Little Tikes car.

For me, seeing him out here again really underlined how much he has grown and how much more mobile he is.

1 in 200

I am still breastfeeding Jamie at 18 months old. First thing in the morning, last thing at night, during the day if he requests it.

This shocks some people, because in the UK it's a very unusual thing to do. Which is odd, because it's exactly the recommended path according to the NHS and the World Health Organisation. Exclusive breastfeeding to 6 months, then breastfeeding alongside other foods and drinks, ideally until at least 2 years, longer if mother and child both want to.

And yet.

The trouble with being 1 in 200 this way is that there's 199 mums who believe you're criticising their choices. So I get all English about it and make sure to validate their choices. I nod and smile and agree that whatever difficulties they faced were insurmountable, to the point where it was barely a choice at all. I imply that in their situation I would have likely made the same choice. I make cracks about how I'm only breastfeeding because I'm too lazy to sterilise bottles.

But a bit of me rages inside. I, too, had some difficulty getting started (I recommend the NCT Breastfeeding Helpline 0300 330 0771, and remember to use a phone that you can put on loudspeaker). I, too, would like to have a day off. I'd like my partner to be able to do the bedtime routine once in a while. I've made medication choices based on breastfeeding compatibility to the detriment of my own health. I've ridden out two bouts of mastitis during which, obviously, I had to look after Jamie even while hallucinating with fever. I've been bitten, basically once per tooth. Breastfeeding might be natural but it's not the soft option. I've worked hard at it and committed to sustaining it because every resource not sponsored by a formula company says it's the best and right and correct and most beneficial thing to do for my child.

It really upsets me that I then end up having to defend that choice, that effort. I've had people suggest that I do it because I want to delay Jamie's development. Or because I'm too possessive of him and don't want to let anyone else care for him. Or because it makes me feel important. Or because I don't know any other way to calm him down. Or because I'm an exhibitionist. Then we have the people who aren't so explicit about it, the double-takes, the "you're still breastfeeding him?!?" remarks, the queries about when I'm going to stop. It all grinds me down.

I'm not expecting a cookie - the cookie is knowing I'm doing my best for Jamie, and Steve gives me a lot of encouragement too - but less criticism and incredulity would be so nice.

06/52 2017

One of Jamie's christmas presents was this red and yellow Little Tikes car that I suspect most readers will recognise.



We finally put it together last weekend and Jamie is still working out how he feels about it.

One significant factor may be that, so far, he can only propel it backwards.

03/52 2017

We don't have much of a garden to speak of, but there's a paved back yard which is a good place for a toddle and some fresh air when we can't get to the park.

I've long had a few plant pots out there, although I must confess that last year they were appallingly neglected due to baby - if the baby is awake, you're too busy to go and water the plants, if the baby is asleep then there's no way you're going to risk waking them by opening doors and wandering in and out!

This year, though, it looks like Jamie will be old enough to participate in tending the plants. I'm not getting overly invested in it, not least because of a story my mother has often shared about how I, as a toddler, pulled the heads off every single daffodil along the length of our garden path. But we might be looking into getting him his own watering can and maybe figuring a way of having a bit of earth that he can dig and poke about in. Recommendations welcome!

Breastfeeding Myths

All other things being equal, breastfeeding is best for babies. Current WHO advice is to breastfeed exclusively for the first six months, and then alongside other foods for as long as you and your baby both want to, which they suggest could be two years or beyond. There are many good reasons to choose breastfeeding.

There are also a lot of bad and misleading "reasons" that get spewed forth with the good ones.

1. It is cheaper because it doesn't require special equipment.

Unless, of course, you want to be at all comfortable and retain any dignity while doing it. In that case, you will need a full set of nursing bras, which means sleep ones and daytime ones, and because your body and breasts will keep changing size and shape, you need to get re-fitted every few months. It will cost hundreds of pounds and comes as quite a shock to those of us who, pre-pregnancy, were small enough that bras were more about decoration than support.

Then you need breast pads, to avoid getting massive wet smelly circles of milk soaking through those expensive bras and making stains on clothes and upholstery, and also to try and stave off the risk of infection. A box of 60 decent ones (like other feminine hygiene products, value-brand ones are false economy) is about £6 and lasts 15 days (you use two pads at a time, obviously, and if you have a day bra and a sleep bra that's two sets per day) so for the two years the WHO recommend you breastfeed, that's about £300.

You'll probably want some nursing tops as well, if you want to feed on demand and intend to ever leave the house. In summer it's not too bad, you wear a vest that you can pull down underneath a lightweight shirt or top that you can either open or pull up. The other 40 weeks of the UK weather year, I for one want my shoulders and back and tummy to stay covered. Not just for modesty either, although that's part of it. But hoicking up a winter jumper on one side means trying to feed the baby around a huge amount of smothering, view-obscuring cloth while half of your back muscles scream in lopsided agony from the chill. It's not a nurturing experience! So you need tops. At least eight, to start with, because you need to account for laundry turnaround time and additional changes due to vomit and other fluids. At £20+ each that's another couple of hundred pounds. But eight tops won't see you through two years. I'm embarking on my second winter and the tops I wore last year are... well... they look like they've had a year of hard wear and are nothing like as warm or as presentable as they were at first. Also, after a few months, while a body might not be quite what it was, it's not post-partum shaped so anything that was marketed for pregnancy *and* nursing looks ridiculous, with armfuls of cloth over a bump that no longer exists. People ask me when I plan to stop nursing Jamie and I'm only half joking when I say not yet, I've spent £150 on nice warm nursing hoodies so it'd be a terrible waste of money if I stop now!

You could get a nursing cover, although I wouldn't recommend it. And you're expected to take breastfeeding vitamins as well, at about £15/month that's another £360 over the two years.

Basically I want to bang my head off things when people assert that breastfeeding is "free".

2. It saves a lot of messing about with bottles and steriliser and so on.

True, but only to a point. If you have any intention of outsourcing even one feed over those 730 days, whether that's for your return to work, or to allow you to have a drink, or when you are sick, or to give other caregivers a bonding opportunity, you need a steriliser and at least one bottle set. These cost the same and take up space whether you use them three times a day, or three times a year.

If you want that bottle to be full of breast milk rather than formula then you also need a pump, hand or electric, and storage containers. We got a "breastfeeding support set" which was about £150. You need to find time to pump while also making sure the baby is fed - no good emptying yourself out in the half hour before the baby wakes! The baby probably won't sleep through the noise of the pump if you're in the same room, and once they're bigger, then trying to find a solid fifteen minutes do anything without their interruption is impossible. Finding time to pump if you don't already have childcare is a fine art. And then you've got to scrub and sterilise all the pump components as well... Once you enter the world of pumping, the "messing about with bottles" argument flies out of the window. As soon as there is a bottle, formula is infinitely quicker, easier, and involves less washing up.

3. It's more convenient.

Again, true up to a point. Yes, in the middle of the night it's a marvellous thing to not be trying to mix or warm up a bottle, instead just sleepily undoing your nightie and latching the baby on in seconds. But the real winners here are the dads. Not only does the baby stop crying sooner, they are off the hook for night feeds, because even if there's expressed milk ready to go, no breastfeeding mama is going to be able to lie still while her baby does the Hungry Cry while waiting for daddy to warm a bottle. Quite apart from the noise level, the sound of the hungry baby causes a physical response of milk production. Bottle-feeding parents can share night duties, when the family is sick then bottle-feeding parents can alternate shifts to each get a solid eight hours of rest. Breastfeeding mamas have no such luxury. Exclusive breastfeeding from source is wonderfully convenient for daddies.

4. Breastfed babies don't need burping and don't have reflux.

Bollocks. Go on, ask me how I know.

5. Almost any mother can breastfeed!

Also bollocks and a really nasty line to pull on women who want to breastfeed but cannot. Note please that I'm avoiding the even more awful caveat "for genuine/valid reasons" because, as with disability, who the hell is a stranger to decide what counts as valid? There's so many factors at play.

6. There's lots of support available!

True, but it would be more useful if it was at all consistent. New mothers get conflicting advice even before leaving the hospital, as different midwives have their different ways of doing things. Websites, breastfeeding counsellors, friends and relatives, everyone has an opinion and at least half of them will believe that whatever you're doing is wrong. The price of "support" is a lot of pressure. At least formula has unequivocal correct instructions on the tin.

Don't misunderstand, I feel very fortunate that I've been able to feed Jamie. I believe, even if I can't prove, that it's been instrumental in turning him into the happy, healthy, secure little boy he is. I feel like I've achieved something significant and that I've done right by him. But I feel like the pro-breastfeeding gangs devalue their message by diluting the genuine advantages with silly half-truths that don't stand up to scrutiny, and this fanatical belief that breastfeeding is the only important duty of a mother.

If you were a parent you'd understand

One of the things that really irritated me as a childfree adult was being told that I could not possibly understand something - love, tiredness, forward planning, laundry, whatever - because I did not have a child.

As a parent, I'd like to reassure all childfree readers that there are only two things I "understand" now that I didn't before. These are:

1. The impulse to talk about poo. I've resisted the urge to post online about the contents of Jamie's nappies. His business is his business. On the other hand, as with all babies there are days when a particularly remarkable nappy really is the most interesting thing to have happened that day or when dealing with it without needing to nuke the site from orbit is truly an achievement, and at those times it is an effort to hold on to social proprieties.

2. The challenge of the nice cup of tea and a biscuit, an interesting combination of relaxation and stress. If you can pull it off, there's few things more restorative than a hot cuppa and a biscuit while the baby sleeps. But the tension is high, as one wrong move could wake the baby, resulting in a shortened nap, a screaming child, no biscuit and a cup of tea which, by the time the screams are quelled, has gone almost undrinkably cold. It's like the most incredibly mundane yet incredibly frustrating computer game ever.

Testing

The other day I blogged about my private scan, and the joy of it, but also my misgivings about the way private healthcare uses fearmongering to boost profits - in this instance, by telling pregnant women that "time was running out" for them to get tests not routinely offered by the NHS.

These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"

So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...

It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.


Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.

So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?

Not the return I'd hoped for

You thought the adventures in cake were pathetic?

Ha.

It can be safely said that 2013 was a catastrophically bad year for me. Things happening to and around me that I could not influence, things I tried to do going horribly wrong despite my best efforts. I would go so far as to say that it was the worst year of my life (the previous contender being around 1998; the big difference being that now I'm in my 30s I have more and better coping strategies than my teenage self). Some of it was single events, some of it was longer-term dramas that just went from bad to worse in ways that would be dismissed by soap-opera writers as simply too implausible. Much of it is still ongoing. Most of it I prefer to keep off the internet.

Still, there were good things. There was sunshine. There was a trip to see friends and family. There were two trips to the Eden Project. There was blue hair.

And through it all, there was my blog, dusty and neglected. I kept thinking about posting but couldn't. Every time I sat down to write, it just seemed too personal or too pointless - or sometimes both.

Coping strategies, right? I should just sit down and write something. Get on with it. Worried about it being too personal? Okay, write something impersonal. Can't think of anything to write about? Well, do something you can write about, and then write about that.

Out came the daffodils, and they reminded me of a primary school "science experiment" where we put food dye in the vases of cut daffodils. The flowers pull up the coloured water, and the petals take on the colour of the dye. For the competent among you, here's the instructions.

So. This blog post was meant to be a nice, positive comeback, lots of pretty pictures, of my lovely yellow daffodils, followed by my lovely multicoloured daffodils.

Unfortunately, this week I've thrown out about a dozen daffodils that... well. If you peered closely, under a good light, you'd recognise a few streaks of colour, but before that, the word that would come to mind would be "dead". "Withered", perhaps, if you were feeling generous.

It's only a mercy that I don't have offspring to look disappointed at me and demand to know why it hasn't worked.

Timing

I often feel quite frustrated about the poor synchronicity between my physical capacity to do things, my opportunities to leave the house, and the weather. For instance, when it's sunny and I feel good and I want to go out and get stuff done, but I'm stuck indoors. Or when my work desk is clear, the weather is okay, and Steve/my PA/someone else is loading my chair into the car for a gleefully-anticipated trip somewhere, but I feel awful and wish I could go back to bed.

So it's with a sort of wry satisfaction that I am sitting here, admittedly in quite a lot of pain while feeling really quite unpleasant with medication side effects, but listening to the rain thrash down outside, snuggled up in a fluffy jumper and the safe and certain knowledge that the nearest I need to get to going Out There today was this morning when I brought the milk in.

There's not even much I need to do In Here.

I'm dopey and tired and I can't sleep for pain, but at least for once my brain's not filling itself up with all the things I should or would rather be doing.

'Cept maybe make another cup of tea.

This is a technical document

Well, of course, it isn't, but I could put words like Cisco and network and voice over internet protocol all over it, and then it would look a bit like a technical document. It wouldn't make any sense, but I can't imagine who'd notice.

You see, ladies and gentlemen, there have been complaints. A particular reader is being a Bad Example To The Younger Generation by reading my blog at work, and apparently I must post more often. It's okay, English is unlikely to be the first language of anyone peeking over his shoulder. Yes, hello you. :)

There now follows a diagram. This proves the technical nature of this document which is entirely work related.



Look, I'm sorry. I mean to write more. I also mean to not just write about disability. I want to write more about my life and what I'm doing, but things divide into two groups:

• Things which are too boring and inconsequential to write about.
• Things which are quite interesting and I want to write about, but after doing the things, I'm too tired to write about the things until later.

Perhaps I should try doing shorter posts?

Today, I did some grocery shopping online. The best bit of doing online shopping when your brain doesn't work the way it's supposed to, is that when the shopping arrives, you've forgotten what you ordered. It's as if some kind of benevolent pixie sent you £70 of delicious food, and there isn't a single item you don't like!

I also had my laundry done. Yes, that's right - don't tell any of the women in my family, but I use a laundry service for my towels and bedlinen. I am a slattern who does not do her own housework. Or possibly a person who prefers not to injure herself wrestling large, wet, heavy pieces of cloth. Either way, in the morning the nice man picks up a sports bag of smelly linen from my house and in the evening he brings it back, fresh, clean, dry, and neatly folded.

I'm struggling with the paperwork for my assistants at the moment - making sure they get paid, and the monitoring that Social Services conduct to be sure I am using the money properly. I set up my systems really well, and my more lucid self has written out clear instructions for how to do each stage so that when I am not very well, I can still get things done. The problem at the moment is I quite literally don't know what day it is. I have "today" and "yesterday". All other days are confused together in a big tangle. So the timesheets and invoices got in a muddle and weren't submitted at the proper times... I think I've unpicked it, though.

Steve and I have been married for nearly a year and we are wondering what we should do for our anniversary. He's been able to book a little bit of time off work and we're looking at options. We have all these ideas - we'd love to go back to the Eden Project, or alternatively there are a few places in London we'd like to visit, for instance the Science Museum - but Steve is so tired out from work, I think he could sleep for a fortnight. We could just stay home and try to put together our wedding photo album. Right now we have thousands of photographs backed up to multiple storage devices, but unless you count shoving a USB stick into a digital photo frame, no album. There are also several guests who we have no pictures of, which is a bit sad.

The book I'm reading at the moment is Memoirs of a Geisha by Arthur Golden. I have read it many times - I first picked it up in high school. It's a bit of escapism, I suppose. I have the DVD as well, but I think the DVD won't make much sense to people who haven't read the book because it misses out an awful lot of backstory and historical detail. Some of the "historical" detail is inaccurate but then it is a fiction novel.

I don't know. What else? What do you want to know?

Following technical complaint about the diagram above: (written by evilstevie)
This diagram clearly only holds true for a relatively small number of passwords - above a certain point you are either some kind of memory-whizz or use a password-manager program to ensure the right password goes in the right box. This has to be the case as most applications of passwords also have something in place to prevent brute-force guessing of passwords, either a counter or timer (or in some cool applications, both) to make it difficult or impossible for you to try more than a few passwords. At a certain point on the graph you simply get a flat-line as you can't enter any more wrong passwords and you stop making new ones or come up with a new way of dealing with passwords. Also, I'd like to add that Batsgirl's clearly been around me too much when she considers VOIP usable in everyday conversation or blogging...

Disabled, not dead

Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...

I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.

But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.

Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*

Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.

Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?

Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".

We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.


* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.

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?

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.

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.

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.

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.

Time is ticking

The wedding is less than three months away. I am oscillating between

(a) Everything is absolutely fine and well in hand. The venue and registrar are both completely booked and paid for so a wedding will definitely happen. Our families have had Save-The-Dates and some have booked hotel rooms so guests will be there even though the proper invitations haven't gone out yet. We have the rings, my dress, and his suit. The DIY projects are on schedule for completion within the next month. The vendors are all booked, deposits are placed, timescales are sensible, and this whole thing should come off without any difficulties at all.

and

(b) PANIC! TOO LITTLE TIME!! TOO MUCH STILL TO DO!!! EVER-DECREASING TIME UNTIL W-DAY!!!! HOW THE SHUDDERING F&%K ARE WE GOING TO GET EVERYTHING SORTED OUT BY THEN?!?!?!?!?!

Ugh!

Over the last few months I've been hanging around on a couple of bridal/weddingy forums.

For very good reasons, it's not the Done Thing to out and out criticise other people's wedding choices.

It's acceptable to offer constructive input when asked, and to show respectful interest in the different customs and traditions being observed. That's a good thing. When someone is trying to decide between bows and floral swags to decorate the ends of the pews in their church, it's a good time to offer any experience of those products, but it's not the time to spark a fundamentalist religious debate about whether they should be getting married in a church at all. Tolerance is important in a community and it's great that different people, in different countries, having very different weddings, can all support each other.

This, however, is not a community. This Is My Blog, just like it says at the top of the page, which means it's not inappropriate for me to voice my opinions, and this has been bubbling up inside me for months now. In the interests of civility, I must stress that I recognise that different people have different tastes and if you want any of this stuff at your wedding, you go ahead, it's your wedding. If you are planning a wedding, or you just had one, you may prefer not to read any further. This is your fair warning: you may be offended.

But at last, I must say that I find the following things hideously tacky.

• White hoodies with diamante transfers saying “Bride” or “Maid of Honor”. (American spelling intentional.) Yes, while getting ready for your wedding it's a good idea to wear something warm and comfortable that can absorb any spills. It's good to wear something that is fully front-fastening so it can be removed without disturbing your hair and makeup. But white with diamante? My dear, you will get enough attention today once you're in the dress. Be content.


• Flip-flops with soles that print “Just” and “Married” as you walk along wet sand. My PA spotted these in a craft store and proposed them as the winner of that store's Wedding Tat collection. And believe me, they had some tat.


• Hen parties with “naughty” games and gifts. Well done, it's a (whatever) shaped like a penis. It's not comical, it's not erotic, and the faint air of desperation is unsettling. Lingerie and sex toys can be great, but I can't imagine there's anyone who's actually turned on by pink plastic fluffy handcuffs, or anything with a picture of a cat and “Sex Kitten!” emblazoned across the front.


• Music on the wedding website. Internet access has reached a point where even your parents have it, so a wedding website is no longer necessarily a celebration of self-obsession viewable only by other geeks who aren't invited to the wedding anyway. But automatically playing music is a step in the wrong direction, as are hearts falling across the screen, or anything that won't properly load onto the smartphone of a guest who's got lost on the way to the venue.


• Vistaprint overdose. On the one hand, Vistaprint do a very good line in affordable, fuss-free printing that can be invaluable for things like invitations and RSVP cards. On the other hand, just because they can put your picture on more or less anything, doesn't necessarily mean it's a good idea. The overdosing idea also applies to people who went to a venue dresser for a few flowers/balloons/table decorations, and ended up ordering a twenty-foot-tall inflatable Bride and Groom in the belief that these would somehow look appropriate outside their elegant, classy venue.


• Pretending to be something you're not. This covers people getting married in churches who don't believe in God, people getting married in libraries who don't read, people who order glass carriages and aren't princesses (Kate Middleton got that bit spot-on), and people who order fancy formal meals that they're not sure how to eat. You make some pretty hefty promises on your wedding day - make them as yourselves.

Ohhhhhh, that feels better.