27/52 2018

Week 27
2 - 8 July



If there was ever a tree that grew for toddlers to climb, it is this one.

18/52 2018

Week 18
30 April - 6 May



There's a lot going on in this picture, but it's a pretty accurate depiction of most of our summer mornings. Jamie doing experiments with water, mostly to do with how differently water behaves compared to the sand that's usually in that play set. The camper van tent, a prize for sustained achievement on the potty training front. The picnic blanket that became the preferred location for eating meals for the summer. The scooter, the red car, the orange dump truck, the pavement chalk... I think we took full advantage of having outdoor space this summer.

11/52 2018

Week 11
12 - 18 March



This weekend we had a very special outing - we were invited to visit a local recycling firm so that Jamie could admire some bin lorries up close.



Conditions weren't ideal - Jamie is on day 2 of a sniffle, and it was snowing - but from his safe vantage point on his daddy's shoulders he got to have a good look and he definitely did enjoy himself. He didn't quite feel confident enough to sit up in the driver's cab though!



Big thank you to Fortress Recycling.

08/52 2017

At the park again, and making better and better use of the equipment. Jamie is really getting the hang of climbing, although he's still somewhat overwhelmed by bigger kids. Having my PA able to hover behind Jamie on my behalf is a boon though. I do my best to be alongside, but playgrounds aren't perfect surfaces and I can't always get as close as I'd like.

45/52

We're out and about trying to squeeze out what we can of the natural light and fresh air before it becomes too cold/miserable to be fun, but the dim light combined with the ever-expanding walking skills mean it's a tad tricky to get photos that aren't just a blur.

This week's photo, therefore, is of an exhausted lad in his new car seat (which, thankfully, he loves and on occasion fights to get into it), clutching his prize leaf even as he snoozes.



I also present a video of Jamie enjoying autumn leaves in exactly the correct way:

44/52

Here is my happy autumn baby. For all that he might have been present for autumn last year, he was six days old the first time we took him to the park and I doubt he was able to make much sense of his surroundings.

This year, of course, was completely different. Over the last few months he has enjoyed any number of outings to any number of parks and nature reserves and arboretums, plus of course the Eden Project. The boy likes trees. And now, in the glorious part of autumn where it's not properly cold yet, and there's colours and crunchy leaves on the ground as well as on the trees, Jamie is also learning to walk, which means a look of utter delight as he gets set down on the ground and realises he can scamper wherever he wants and really investigate things.

Of course I never get to catch that look on camera because I need both hands to let him down and steady him for a moment while he remembers how to stand and walk in shoes, but then he's off, and even over lumpy terrain can manage a good few metres before stumbling.



So instead, I get this look, which I think is "mummy, look at these leaves!" He's learning about it being ok to hold and play with them but not to put them in his mouth, he's learning about crunching them in his hands, he's learning about falling over and leaves sticking to him (along with the mud, dirt, twigs, grass clippings etc, but this is why we have a washing machine and a vacuum cleaner) and he's basically having a whale of a time. Winter and even christmas will have a lot to live up to if they want to rate alongside a park in autumn.

43/52

I make no apologies for this week's post being late, because as some of you might already know, we celebrated Jamie's birthday with his first trip to the Eden Project. Organising our photos has been low on the priority list.




This was the furthest we've been from home and the first time we've been away more than a single night. It took a lot of planning and a lot of work before and during the trip but it was all worth it. Of course, at 1 Jamie isn't quite in a position to understand why it's amazing - for all he knows, massive bubbles full of plants is an entirely normal thing to do with a hole in the ground. But he was certainly in a position to understand that it is a precious space to his parents, and he's always loved trees. He wasn't completely sure to make of a story time with no book but he noticed that other bigger children were watching. This picture was taken in the Citrus Grove of the Mediterranean Biome, on the chair that the storytellers use.

35/52

This week I took Jamie to the splash pool at one of the local parks. It was the first time - we needed the weather to be warm enough to have a splash, but not so warm that we would be toasted alive, and we needed to not have any other commitments, and we needed to not be ill... But it all came together and at last we've done it.



I wasn't sure how Jamie would take to it but he seems to have had fun. I have the distinct feeling that it was helped along by the social cues of the other children clearly enjoying themselves.

We discovered a few pitfalls that I hadn't anticipated but probably should have, the biggest one being that:
- Jamie needs to be holding two hands to walk
- I can't walk without one hand to support myself
- The splash pool is just a bit too deep for me to be able to shuffle on my knees, unless I'm prepared to get properly wet to the waist, which I'm not, because it's a free facility and therefore lacks luxuries like changing rooms and it's not really the done thing for an adult to strip off in the middle of the kiddie play area.

I settled, instead, for a minor case of Soggy Bottom from sitting on the edge of the pool and restricted Jamie to walking within arm's reach. Next time we'll see about my PA having a skirt or shorts so that she can join us in the pool. But there will definitely be a next time.

26/52

This week, it's Mr I Love Standing again. But now, with his first pair of shoes!



Before anyone says it - no, babies Jamie's age should not be having their feet moulded into shoes. They should be barefoot or at most in socks/tights and soft bootees when it's cold. Quite apart from allowing the feet to grow, having feet in contact with the ground makes balance easier and is a sensory experience and so on... I know that, and 99% of the time Jamie's feet enjoy glorious freedom.

However, Jamie is no longer content to just toddle about on the picnic blanket when we go to the park. And the first time he insisted on stepping *off* the blanket, I had a sudden visual shift, where the park changed from a lovely carpet of fresh green grass and flowers and dappled shade of trees, to a horrific vista of twigs, splinters, discarded peanut shells, urinating dogs, cigarette ends, broken plastic forks from deli lunches...

So. For walking around outdoors, shoes. We went to Clarks, and he was measured as a size 2 1/2 F. At first he was very confused by his shoes. I think maybe he felt like the floor was coming with him as he stepped. But he soon got the hang of it and now, as long as he has a willing minion to provide fingers for him to hold, he can walk metres and metres. It's brilliant and scary, all at once.

19/52

Efforts to introduce Jamie to "solid foods" - a term which at this stage pretty much means anything more solid than milk - are continuing.

In this picture Jamie is wearing an Ella's Kitchen Spinach, Peas and Pears puree underneath his first taste of strawberry yoghurt. Strangely, or perhaps not, he seems to prefer the spinach.



There's not much to report, really. His spoon skills are doing nicely. My policy at present is that I will keep loading the spoon until he stops reaching for it and shoving it in his mouth, but he can only have bowls once they are emptied. He has been given finger foods - overcooked and cooled sticks of carrot, apple, broccoli, etc - but these are so far being treated with extreme suspicion.

To be honest there have been far more exciting things going on this week as Jamie has really nailed rolling and continues to experiment with his commando crawl. The trouble is that I don't get much opportunity to photograph that stuff. If he's not asleep or harnessed into something (sling, pushchair, high chair, car seat) then he's a bit of a blur. Maybe I need to ask the PAs to start doing photographs?

18/52

This week's photo is of Jamie having a good post-reading chew on The Very Hungry Caterpillar.



The reason it's been chosen as this week's photo is because this week, Jamie started to get that bit more mobile. He not only rolls confidently, but this picture is after the first time he managed to, well, not quite crawl, but wriggle and drag himself around.



And this was his goal. He started with his body entirely on the play mat - it might only be a few inches that he managed to move, but he managed it! I am incredibly proud that the first time he exercised his ability to move independently, he was going for a book.

16/52

Last week's tooth seems to have subsided - apparently this is a Thing and normal. So, Jamie had to cast about for a new milestone:



It might not look like much, but if you will observe the space devoid of toys just next to the boy... because this was the week he got the hang of rolling from his back to his front!

He'd had rolling from his front to his back sorted out for quite some time, but from his back, all he could reliably do was get onto his side and then become frustrated about his own arms getting in the way. But now, he's rolling about quite contentedly. Which means we've got that play mat opened up just in time!

Bank Holiday

The bank holiday weekend managed to coincide with some absolutely magnificent weather, so on Friday we loaded up the car - me with my picnic blanket and knitting, Steve and a friend with more camera equipment than you can shake a stick at - and set off for Wales in search of Scenery.

It'll be a while before the lads get round to uploading anything from their Big Cameras, but here's a snapshot from Steve's action cam:



This is Lake Vyrnwy, as viewed from a picnic spot accessible from the perimeter road. Getting from the parking area to the grass, while only a few metres, was a bit precarious in places. I opted for wobbling rather than wheeling, although I think a fit person in a more sporty chair might well manage. No filters have been added to the picture - the sky really was that blue. I started off knitting on my blanket, but after a couple of rounds I was just sprawled out, soaking up the sunshine and listening to the water.

We considered trying to visit the area by the waterfall where Steve and I got engaged, but the track now has a locked gate across it, so we had to abandon that plan. It's slightly sad that I won't be able to get to it again, but we're not planning to get engaged again, so it's not too much of a tragedy. And it was a bit of a dire track.

So instead, we carried on with a scenic drive along to Bala, with another couple of stops around the lake there. I seem to have avoided getting sunburnt, although that's more luck than judgement. It's a good start to the summer.

Cake (picture-heavy)

For reasons too complicated to explain, I found myself committed to baking a cake for a friend in another country who isn't going to be here to eat it any time soon. The only relevant part of the backstory is that I was meant to make a cake some months ago and made a bloody great mess on the floor instead. It's almost like I got DLA for a reason.

Nevertheless.

Part One was done in advance. I found a recipe, of the sort that tells the cook to get an adult to help them with the oven, and went and bought the stuff I'd need.

I think eggs and butter were the only things I had in the house anyway, and I didn't have enough of either, so I purchased the whole recipe. Using mostly supermarket-own-brand ingredients this came to about £15. Admittedly I have a lot of stuff left over - flour, sugar, icing sugar, vanilla essence - but I'm really unlikely to use any of it. Even if we just add up the things that were entirely used up it comes to over £8. It would definitely have been cheaper, in monetary terms, to just buy a cake.

Nevertheless, again. This is not about eating cake. This is about making a cake.

Greasing the cake tin wasn’t too traumatic. Measuring ingredients was a bit okay if a little messy at points. Creaming the butter and sugar brought me back to that whole "DLA for a reason" thing. But that's okay, because the difference between making a cake and cooking a meal is that I can take as long as I like to make a cake, and it doesn't matter if it's the only thing I do today (I will now stop banging on about DLA. I'm just always worried, when I post about my biannual adventures in cookery, that someone's going to try and use it to report me).

Adding the eggs to the butter and sugar was… well it started okay and then I thought it looked a bit lumpy, but no matter how much I stirred the lumps wouldn’t go away, so I figured, it’s butter, it’ll have to melt when it cooks if nothing else, and pressed on, adding a tidge of vanilla essence, a tidge of milk, and the sifted cocoa and self-raising flour.

The resulting dough was tasty… uh, did I say tasty? I meant it looked tasty. Yes. Looked. Having no great cake-making expertise I did wonder whether it was meant to be dough. If it was meant to be batter then I’d done something really badly wrong at the measuring stage. But I was too messy to Google it, or to take pictures and ask Twitter. So I kept going.

Wrangling the wodge of dough from the mixing bowl was awkward, and then it kind of sat in a big sticky messy lump in the middle of the cake tin. It didn't really look like any kind of proto-cake so I sort of splatted it out a bit. Not squished it flat or anything, but made it a bit more circular and more evenly shaped. I probably should have taken a picture before it went into the oven, but it was already in the oven when I realised that, and even I know you're not allowed to keep opening it.

The time it took to bake was longer than the time I needed to find instructional videos on how to check a cake is done and how to get it out of the tin. I have a springform cake tin with a removable base, so getting the cake onto the cooling rack was remarkably easy. A couple of people have already expressed jealousy about my cake tin. Seriously, it cost less than the cake ingredients. If you enjoy baking, and are frustrated by normal tins, then just get one.

And lo! Cake! Properly baked, not dry, not burnt, not soggy!


There was, however, one small problem.

At just an inch and a half in height, the stage of the recipe that called for cutting the entire cake in half horizontally was going to be more of a challenge than this novice could handle. Happily, I'd been looking for a way to avoid that particular challenge anyway, so it didn't take me too long to decide that actually, I'd just cut the cake in half the easy way, and stack the halves into a semicircular cake.

I mixed up the filling and while that was chilling in the fridge, I had my lunch:


It was very tasty.

Finally, it was time to assemble the cake.

From this side it pretty much looks like chocolate mousse with cake somewhere in the middle...


... but from the other side it looks much more cakelike.


If I was doing it again, I would probably try and get a smaller cake tin. I also think that while the whole raspberries look good on the top, for inside the cake, making it a sandwich of chocolate filling on one side and raspberry jam on the other would work better than thick chocolate filling with whole raspberries added.

I have a great sense of accomplishment for having successfully made a cake. All things considered, though, I probably won't be doing it again. The cost of ingredients, the pain, the time, the cleanup, are just all too much for what's basically a pretty mediocre cake. In future I will continue to outsource all of my cake requirements to the lovely experts at Sweet As.

Eden Project - Time of Gifts

(picture heavy)

Steve recently finished what I shall tactfully describe as a "gruelling" work contract (and yes, that is putting it mildly) which took a toll on both of us, and we decided that we were owed a little break before getting into the fun of preparing for Christmas and trying to figure out where our life goes next.

Given a free choice of anywhere to go, nine times out of ten I will pick the Eden Project (the tenth time I will beg to stay in bed and be brought cups of tea). In the last year we've been to Cornwall three times, and on each occasion we've visited the Project for two or three days, and I still always feel sad to leave.

Last time we went was in May, when it looked like this:


In November, even inside the Biomes, it's more like this:


I still get a great sense of peacefulness and well-being from the Project. And the access. Oh, the access. No being sent round the back, no staff tutting at you if you can't keep up, no "special" holding pens areas, no leaving you sitting by the bins while they try to find out if anyone knows where the keys for the service lift have got to. Universal design, access is front doors and main paths all the way. The slopes can be a bit of a workout and there is a certain amount of mileage involved in getting around the place, but they have scooters and powerchairs which can be booked in advance. November being the off-season, they weren't all booked out, so at the gate I was politely offered the option of using one of their powerchairs "if it would be easier." More importantly, my choice of sticking with my own chair was accepted without fuss.

As he tends to, Steve took hundreds of photographs of all sorts of beautiful plants, flowers, sculptures and suchlike, and I'm sure soon he'll load them up to his Flickr stream which will be much better than me trying to describe. But he's let me pop a few onto my own Flickr stream so that I can blog this.

The second day of our stay, the Friday, was the beginning of the winter celebrations at Eden, which they call the "Time of Gifts". There is, of course, a Father Christmas with a cohort of elves and a stable full of actual reindeer, much of which is centred around the Sami people of Northern Europe. I was more interested in the goings-on within the Mediterranean Biome, though - storytelling, music and craft activities particularly. There are definitely worse things to do on a Friday afternoon than to sit and make Christmas decorations and chat with a bunch of friendly strangers, listening to live music and surrounded by the gorgeous smells of Mediterranean plants. As it got darker, Steve returned from his photography spree and brought me a hot chocolate to warm me up while we listened to the evening story and music.



Then it was time to leave the Biome and get ready for the lantern parade. There were large sculpture lanterns being carried mostly by staff and volunteers, but anyone who wanted could join in the parade with a pyramid-shaped lantern on a stick, with a candle inside it. Anywhere else, I'd have assumed I couldn't participate. At Eden, no one batted an eyelid. So here I am, in front of the big Christmas tree outside the Core, carrying a lantern wedged between my legs and my wheelchair, waiting for the parade to start:

And modelling my own handknit hat by the light of my lantern:


The procession began with large sculpture-lanterns coming down the ZigZag path towards the Core building, where we were waiting. It was an impressive sight, although with a slightly hairy moment as a nearby child forgot to pay attention to his own lantern (my reaction of "excuse me! please don't set fire to me!" made me realise just how incurably English I can be). As the sculpture-lanterns and their accompanying drummers came past, we were filtered into the procession. It was quite a strange experience to be actively participating in something like this, being one of lots of little bits. There was a very carnival atmosphere.


The procession wound around the gardens outside the Biomes, lit by flame torches with occasional groups of non-participating onlookers. It ended by a gazebo of fairy-lights, where the Eden Choir were waiting to perform. Since the wheelchair makes me an honorary short person, I was ushered to the front with the kids so we could see.



Listening to the Eden Choir was lovely, and some of the drummers joined in ad lib. Then there was a short and unexpected burst of fireworks which sent Steve whirling around to try and catch a shot:


Finally, this lovely piece of fire art, lit while the choir sang, reminded me very much of the Paralympic closing ceremony which meant that in a strange way it reminded me of summer again.

First Anniversary

It seems hard to believe, but Evilstevie and I have been married for an entire year.

Truth be told, the year, while not tragic, has not been a terrific one either. His work schedule has involved a level of "out of hours" work rather higher than we had expected and this extra work tends to crop up at extremely short notice - we rarely know in the morning whether we will be having an evening meal together. His workload over the last twelve months has been so heavy that it was January before he was able to take time off work for our "honeymoon" and he is still accruing "time off in lieu of hours worked" faster than he is getting a chance to actually use it. For my part, chronic illness does not respond well to such chaotic routines, so my pain and energy levels are no longer as well controlled as they once were, which in turn means the carefully balanced dominoes of my overall health and ability to Do Things (work, socialise, eat properly, manage disability bureaucracy) have crashed. It's all a bit of a mess, really.

On the bright side, we're very much still hanging on to each other and making each others' worlds that little bit nicer. This is definitely a more positive outcome than the alternative, which would be each of us yelling at the other "this is all your fault!"

And on the even brighter still side, at the beginning of May, Evilstevie came home with the biggest grin I'd seen in a long time and proudly announced that he'd booked the week of our anniversary off work, and we both squeaked and hugged each other and began to make plans.

On the morning of our anniversary, we had a quick photo-session to try out an idea I'd picked up via Ravelry. This was to take a picture of the two of us holding a picture of the two of us from our wedding. We took several - this is one of my favourites, although you can click through to see the others:



Then next year we print off one of those pictures and do the same thing again... you get the idea.

Photos taken, we packed ourselves into the car and set off to use an outstanding wedding gift from some very generous friends - a night at a luxury B&B in Devon. The weather steadily improved as we drove south and by the time we arrived I was regretting my failure to pack sun-cream and sandals. Instead we got a chance to sit in the shade looking out at glorious countryside, with tea and knitting for me, and coffee and camera for Evilstevie. Dinner in a nearby pub/restaurant was delicious and falling asleep in a beautiful room under crisp, fresh sheets felt like the holiday had properly begun.

The following morning, after guiltily declining most of the humongous breakfast spread on offer in the B&B's dining room, we loaded back into the car to go to one of my favourite places on earth - the Eden Project.





We first visited the project in January, and if you GiftAid your entry fee then you can get a year's pass to return as often as you like (or at least, as often as you can, because I think I could go every week for a year and not get bored). A brief stop to share the joy with Twitter, and then we spent the morning trekking up and down the outdoor areas, the idea being that if it started to rain, then we could head for the indoor biomes. Of course it didn't rain at all, and by the time we'd decided to stop exploring outdoors and head for the Link, my shoulders were about ready to drop off. We had a break for a late lunch, but I felt that I wouldn't manage much more pushing and that I'd like to just go into the smaller Mediterranean Biome to relax, instead of trying to hike around the larger, steeper, hotter Rainforest Biome. Evilstevie agreed and we made our way across.

That was where we found "the Back-rub team" offering 15 minutes of reiki back massage for £10, which to my burning shoulders and floppy exhausted arms seemed like a wonderful idea.

It really was. I mean, I didn't leap up and dance my way around the citrus grove or anything, but after a bit more of a rest and stretch I was able to not only get around the Mediterranean Biome but in short bursts I managed the Rainforest as well.

That night we crashed out at an unremarkable Travelodge in Bodmin, with the idea being that in the morning we'd be able to head home or elsewhere as the fancy took us. I'm sure nobody will be surprised to hear that in the morning, despite being shattered, we went straight back to Eden - we didn't find the back-rub team but we caught the Storytelling and had a lovely lunch before reluctantly heading for home and a couple of days to recover.

Naidex 2012

On Wednesday, I went to Naidex National at the NEC, Birmingham.

I have to say, Naidex itself wasn't as good as last year. Last year, I saw all sorts of innovative products and came home with lots of literature and a wish-list as long as my arm. I also picked up goodies like the National Trust's Access Guide, and was able to have demonstrated to me how much more comfortable an ergonomic office chair can be. A number of stallholders were communicating on Twitter, having actual conversations with people who said they were going to Naidex, encouraging them to come and say hi at their stall, and I dropped in on several of them. There were also a few inventor/entrepreneur types there, interested to hear ideas about what products we'd like to see in the future. I felt like I was the target market as a disabled adult in charge of her own home, equipment and finances.

This year was different. Only one company - PoolPods - engaged with me on Twitter. Their product, while I'm sure it's lovely, isn't really relevant to me - but I thought I would say hello anyway. Except I couldn't find them! Step One was easy, finding them in the list of exhibitors, they were listed under "P" for "PoolPods", simple. Stall G82. Step Two was slightly more difficult, trying to find Stall G82 on the printed room plan, but after a bit of hunting I spotted it tucked somewhere at the back of the hall. But Step Three, actually finding that stall? Couldn't do it. There were frequent traffic jams because a small cluster of two or three people standing in front of a stall could block half the aisle. Add to that the lack of signposting or labelling of the aisles (would it be so hard to have North-South aisles numbered 1, 2, 3, and East-West aisles labelled A, B, C?), the manoeuvrability issues of many attendees (wheelchairs don't tend to sidestep well, mobility scooters are often quite long) and the usual pedestrian traffic flow problems (people stopping for a chat on a busy intersection), and it was nigh-on impossible to follow a planned route to a particular point on the map. Nor was it possible to just wander up and down the aisles until you found what you were looking for - the layout was confusing, the aisles weren't continuous, and stalls faced all directions. There were several stalls I saw twice or three times and others I didn't see at all.

The small, interesting vendors with "everyday" disability products (such as Trabasack and DisabledGear) didn't seem to be present this year. I also felt that there were fewer stalls aimed at "people like me". For instance, I saw umpteen companies offering incredible, amazing off-road wheelchairs, powerchairs, hand-cycles and suchlike. We're talking massive knobbly off-road tyres, aggressive-looking LED arrays and exciting metallic paint finishes. That's great, but these aren't the sorts of chairs you can use for your everyday needs. You couldn't ride them into Starbucks, or a high-street shop, or a work meeting, or your kid's school for the parent-teacher evening. They also probably won't fold down to fit in the boot of the average Ford Focus, either. They're aimed at people who are disabled but who also have TENS of THOUSANDS of pounds to blow on leisure equipment over and above what they use every day. This made me feel sad. I mean, on the one hand it's terrific that disabled millionaires have so many choices of how to spend obscene sums of money, but on the other hand, products like comfortable wheelchair jeans are going to be far more relevant for far more people.

But! That was only part of why I went. The other part was to have the opportunity to meet up with other disabled people, and that was managed with great success. One is a very good friend who I have met before on several occasions, and we had a much-needed cup of tea together that in itself made up for the disappointment of the exhibition. Another person I have "known" and considered a friend for many years, but only online, and my PA tells me that my face lit up like a Christmas tree when I saw her for the first time. Others had familiar names and I'm pleased to be able to add faces. Eventually our group - consisting of two powerchair users, two manual wheelchair users (myself included), one person using a mobility scooter, and two people without any visible mobility aids at all - made our way into a well-known pub/restaurant chain for lunch.

Incidentally, I still get a thrill from that. Us being able to go and have lunch together in a pub is concrete proof that campaigning for equality works, has worked, and can continue to work. There's still a way to go, but it would have been unthinkable thirty years ago.

The meal was not spectacular. The company and the conversation were. There's an unusual sense of freedom when socialising with other disabled people, because you can actually go ahead and talk about disability issues without having to draw a diagram of the welfare/social care systems, and without being pitied, and without having to listen to any ablesplaining about how surely X doesn't happen any more, and the real problem is Y, and if you try Z it'll all be sorted out. No one feels the need to make the stupid jokes about running over people's toes and there's no sense of being the "odd one out". For me, it's also really refreshing to socialise in a role other than as "Steve's wife" - Steve is a nice person and so are his friends, and I like spending time with them, but it's a completely different thing to socialising as purely myself.

Of course we're all rather wiped out now. For spoonies, a look around an exhibition followed by a couple of hours having lunch and a chat with half a dozen friends can have repercussions for days on end. It's embarrassing to think about how long it's taken me to write this post. Nevertheless, I still think that despite the disappointment of the exhibition itself, the day was worth it.

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.