Friday, May 01, 2015

BADD 2015: Progress

Blogging Against Disablism Day, May 1st 2015

Written for Blogging Against Disablism Day 2015.

Years ago, I participated in BADD 2009 with this post about an offensive blog comment I had received. The commenter had noticed that, participating in a Bucket List style meme that was going around at the time, I'd mentioned that having a child was among the things I would like to do. She felt it her duty to inform me in no uncertain terms that it would be "cruel" of me to inflict my "seriously broken" self on a child and instructed me to "stay on birth control and accept (my) fate" of not being a parent.

It wasn't the first time I'd had to put up with that kind of garbage. In the earlier years of my illness, in an exchange I've never quite managed to get over, my sister had somewhat triumphantly told me that now I was sick I would "just have to give up" on my lifelong hope to one day have a family. When I made a slightly stunned effort to assert that disabled people could still have children and that as long as I secured the right support it would be possible, suggesting an au pair as just one potential option, my mother joined in with the marvellous line "why have kids if someone else is going to raise them?"

After having to deal with attitudes like that from my own family, I wasn't exactly going to be left devastated by a semi-anonymous blog commenter. On the contrary, having the attack coming from someone I didn't know meant that I finally had a chance to reply without worrying about the feelings of the person who'd just insulted me. But I was still a little bit concerned about what sort of response there might be, considering how BADD posts tend to get rather more exposure.

The support from the online disability community took my breath away. People were angry right along with me. Directly and indirectly, via comments and emails, parents shared their stories - not sugar-coated success stories or bitter tragedy ones, but real stories including the hard work AND the joys and achievements involved. The BADD archive, for every year since 2006, offered a category of posts on "parenting issues", both for disabled parents and for parents of a disabled child. Not to mention all the posts in other categories, written by disabled parents but not about parenting!

I felt more encouraged, rather than less. I learned about all sorts of little tricks, suggestions, ideas, and resources (although if anyone can suggest an active non-Facebook replacement for the sadly now defunct Disabled Parents Network, it'd be a help). I was able to access publications written for disabled parents telling me what sort of support I should be able to expect from Social Services, and how to go about accessing it. Sure enough, I spoke to Social Services and got written confirmation that I would be supported in my parenting role. I'm also pleased to say that having this more concrete grasp of what I'm doing appears to have enabled me to put my family's fears and prejudices to rest.

In October 2015 Steve and I are expecting that baby. We are confident. Our baby, our so very wanted baby, will arrive and will be loved and cared for, and part of that is due to the hope and practical help that BADD unlocks.

Friday, April 24, 2015

Pregnancy announcement

It is with great joy that Steve and I are able to announce that we are expecting a child, due in October.

This is a wanted baby, and a very carefully planned one. Without going into too many gory details, it's been a bit of a long and turbulent journey getting here. But worth it - although I still reserve the right to occasionally sound off about how tired/sore/fat I'm feeling! Just take it as a given that no matter what else I say, I'm also feeling fortunate, happy, and excited.

13wks annotated for web

So, this is 14 weeks, out of a potential 40 +/-2 weeks, which means we're a third of the way there and safely out of the high-risk miscarriage zone. While there's no such thing as a guarantee, our risk has plummeted into the tiny-fractions-of-percents and we can feel confident that by November we'll be a family of three.

That said, it sometimes feels a little bit abstract at the moment. On an intellectual level I understand what's going on, and I can look at my scan pictures and my maternity notes and see that everything is just as it should be, confirmed and verified in multiple ways. But as an issue of belief, I'm kind of struggling to believe that we've finally been that lucky and that I won't wake up tomorrow and it not be true.

You see, during the first trimester there wasn't really much doubt about whether I was pregnant or not. All things considered I didn't have a particularly bad time, but the symptoms were definitely there, more or less all the time. My boobs were growing, my mood and appetite were all over the place, I was feeling (although thankfully not really being) sick most of the time, and of course the tiredness goes without saying. I could feel that I was pregnant.

Now, the baby is properly anchored in, the placenta is up and running, I've got used to the bigger boobs, and everything has become much easier than it was a month ago. But at the same time, I don't yet have a pregnancy bump to speak of, I'm still wearing all the same jeans I was wearing last year, and I can't feel any movements yet.

Trying to remember that the little wriggling creature they showed me on the screen is actually doing all that wriggling inside me, and it's not microscopic or anything, it's already more than 8cm long from crown to rump, and my uterus is the size of a grapefruit, and I definitely didn't dream it... feels weird, in a "who am I trying to convince?" kind of way.

The other problem with the current lack of bump is that there's this hormone called relaxin, which loosens up the muscles, joints and ligaments in the pelvis and stomach area so that everything can get out of the way of the growing uterus. My relaxin is doing a brilliant job, which means that what muscle tone I had around my stomach has just gone blup. It's not that I was very fit beforehand, I was overweight and I know that, but this just looks like I ate way too much pizza. Glamorous it is not.

13 weeks

Nevertheless, this picture has to exist so that the proper-bump ones over the next few months have something to be compared to!

Sunday, August 24, 2014

Nail art

I was idly wondering about nail art, and whether it existed as something other than an expensive extra on an impractical salon manicure. I had some time to kill in town, so I went into Claire's Accessories. Yes, I know you're supposed to get that out of your system when you're thirteen. I didn't. Besides, unlike my teen years I'm now in a fortunate financial situation where the occasional fiver does not represent a substantial cash outlay.

Claire's had nail art kits of all kinds. Tiny brushes for people painting their own designs, stickers and stamps and stencils for people who want a shortcut, and also various "wheels" of 100-150 tiny shiny pieces of assorted plastic. The one I got was similar to this one, although the pack I got was being discontinued, so it was slightly different colours than the one I've linked (it was also reduced to £1.50).

You put on nail polish, then while it's still sticky you use tweezers to place a tiny shiny piece of plastic in the desired spot on your nail and tap it down. Then you put on a layer of clear topcoat (a bottle of which was £3) to seal it in place. Total cost came in under £5, which is acceptable for an experiment, especially if the quantities are such that if it works out well you can repeat it.

I did the dishes, and I went to the loo (you should always do both of these things before trying to apply nail polish), then fired up a mouse-only computer game to play during drying-time and started painting.

Getting the tiny shiny pieces of plastic on was a lot easier than I thought it would be. It's definitely a tweezers job, but it turns out that in relation to a fingernail the pieces of plastic aren't so tiny after all.

Raised dots

As you can see, they're only a millimetre or so but they're still quite a significant lump. I figured that despite the hour they'd had for drying, they would come off within minutes of actually doing anything, but that it had been a fun experiment.

I scooped wet laundry out of the washing machine. I could feel the bumps being knocked by the fabric, but they stayed on.

I pegged some laundry out, carefully. The bumps snagged against the clothespegs and I dropped a couple of them, but the dots stayed in place.

Then it started to rain, so I scooped the laundry in as quickly as I could. I felt certain that the rush and the lack of attention would mean I'd lost at least one tiny shiny piece of plastic... nope, still there.

I went to the loo, which means buttons and zips and enemies of a manicure, but the dots survived, and they also survived the washing and towel-drying of hands.

I went for tea and cake with a friend. I could feel it every time the dots knocked against the cup or the teapot but they weren't going anywhere. They didn't mind me putting my coat on or taking it off, or fishing in my handbag for my phone/purse/tablets/etc.

I did some knitting and while I could feel the dots getting gently caught in the holes of the lace stitches, they're smooth and didn't snag. By this point I was really starting to love them.

Knitting with nail art

We went for dinner with a couple of friends and I happily showed off my nails. We speculated about how many out of the ten tiny shiny pieces of plastic would be lost in the bed come morning. With the best will in the world, even I expected to lose at least one.

Wrong. All ten were still present and correct when I woke up and have also withstood showering, drying, and getting dressed, although in the interests of a full disclosure I should admit I didn't wash my hair.

There's a bit of me wondering if they might even survive until I meet up with a friend for knitting on Tuesday. And if not, then unlike the salon version I can repair it myself, since I still have more than a hundred tiny shiny pieces of plastic and an almost-full bottle of topcoat.

Monday, August 04, 2014

Ice cubes

We have the most *amazing* ice cube tray - cute and accessible.

Here's the manufacturer's website for the black + blum brrrrr ice cube tray, but I thought I'd take a picture that was a bit less stylish and a bit easier to link to, as well:

Ice bear!

So basically it's a wide-necked bottle that has ten blobs along one side. It's up to the beholder whether this makes it a ten-legged polar bear. The bear's black nose, aka the lid, just pops off, nice and easy, no gripping or twiddling required. There is a hole in the part of the bottle that makes the bear's "back". You hold the bottle upright (the shape makes it easy to hold) and pour in water (hurrah for the wide neck) until it starts to come out of this hole. That means you have the right amount of water. You pop the lid on again. Then you stand the bear, on its legs (or whatever), in the freezer, where the gravity does a much better job of distributing the water than I have ever managed with a dribbling tap or shaking jug.

Another thing which makes it much better than a traditional ice cube tray for me is that I don't have to try and balance it over to the freezer. As long as the bear's nose and back are facing more or less up, then water can't come out. It's very anti-spill.

Getting the ice cubes out is even better. No wet hands, freezing fingers, cracking the tray, fumbling to lever out one or two, failing and sending the whole trayful across the floor. You just hold the bear by the head and bang it against something until you hear the rattle of some pieces of ice coming loose. Then you pop off the nose again and pour them out. Yay icy bear vomit!

Monday, July 28, 2014


One of the unblogged adventures of 2013 was my tomato plants. We got a Heinz Tomato Ketchup-themed Christmas present that included a couple of little pots and a packet of tomato seeds. Having a less than stellar track record with novelty-gift plants, we didn't expect anything to actually grow. We just figured that there was nothing to lose by putting them in soil and seeing what happened.

small red plant pots with Heinz tags

Amazingly, they grew. In fact they grew beyond all expectation, despite snow and frost and neglect. My PA brought over some of her spare plant pots and some compost so that I could pot them on and they could carry on growing. I feared that the act of breaking them apart from their clumps in the tiny pots would kill them... no, they not only survived, but they continued to grow to the point when they got too big again and my lovely neighbour gave me a few more plant pots, plus some bamboo canes and plant ties to hold them up. I ended up with about 14 plants that grew about 50 decent-sized tomatoes between them, the only slight downside being that for some reason they didn't turn red until October, and ended up becoming soup rather than salads.

Once I had not just harvested but also disposed of the tomato plants, I realised that having the soil and the empty pots was a bit sad, so I went to a garden centre to get bulbs which require a level of wintertime maintenance that I can totally deal with, ie, none. Leaving the pots alone for a few cold, wet months resulted in snowdrops, crocuses, and then daffodils this spring.


The daffodils were followed by alliums and then that was it for the bulbs. The yard was bare again.

A day came, about a month ago, when I didn't have any particular tasks that needed doing and had planned to go have a day out somewhere new with my PA. Unfortunately I really wasn't feeling too well at all so I adjusted the activity level down to: go to a garden centre, find a nice little flowering shrub or something already in a pot to brighten up the yard again with minimal effort. Have a cup of tea and some cake at the garden centre cafe, and then come home. Small quiet excursion that is better than staring at four walls.

Unfortunately it was one of those days when even that was too much. I could barely push from the car park to the cafe. I looked at all the cakes and decided that no, I did not want cake (which is not like me). We got the tea for form's sake but I only managed to drink half of it before I absolutely had to go home. Plants didn't really seem like a priority.

My PA was understandably hesitant to leave me all on my own for the rest of the day. Instead she made sure I was safe and comfortable for a nap, and then went to fetch from her own greenhouse the excess plants that she hadn't planted in her garden. While I slept, she filled my pots with all sorts of plants. I was really touched by the gesture, and as the weeks have gone by, the flowers have bloomed into an ever more colourful display.

pots filled with brightly-coloured flowers

There's some white ones starting to open on the big plants at the back, and a few tiny blue ones hiding in the gaps between the pots. There's also scented ones mixed in... I don't know what any of them are called, but having them there to look at is making me so happy.

Tuesday, July 15, 2014

Coombe Country Park

This weekend Steve and I had a friend come to visit, and the three of us went to Coombe Country Park. It's very pretty and a really nice place to spend a sunny day. Entry is free, parking is the really quite reasonable sum of £1.90, and access is pretty good as these things go. It's "natural" paths rather than tarmac, so not the smoothest of rides, but in the dry weather the easy access route is very do-able and the medium access was what I would describe as bumpy, but possible with assistance.

I needed assistance three times.

The first time was to go over a bridge. The gradient of the slope up was just a little more than I could comfortably manage... I probably could have done it but there's no prizes for hurting yourself when you're with people who are entirely happy to give you a boost.

The second time was to go down a slope where the path had a deep rut all the way along the centre, presumably caused by a combination of feet, bikes, and from the look of it I suspect water when it rains. It was just a bit too wide for my chair to go astride it, and there wasn't quite enough space for me to go down one side of it - especially once nettles, tree roots, patches of loose pebbles, patches of loose sandy soil, etc got factored in. So Steve took my chair down and our friend took me, and we all made it safe and sound to the more solid path at the bottom of the hill.

The third time... the third time was the most terrifying, but was nothing to do with the park itself. It happened, of course, at about the furthest point of the two-mile medium access loop around the forest and conservation area. My left front wheel started making a funny noise. The funniness of noises is a bit subjective when you're talking about hauling a four-year-old cross-folding wheelchair along a forest track, but this was a really funny noise with more than a hint of ominousness. I looked down, and noticed that one of the two bolts holding the left front wheel unit on was sticking out by just over an inch. I put my brakes on, reached down, and caught the bolt as it came out completely and the whole wheel unit flopped.

Things got worse as I examined the bolt and saw it required an allen key. Although I had two pocket multitools with me, furnishing an assortment of screwdriver heads, cutting blades, bottle openers, tweezers, pliers, etc... the nearest allen key we knew of was in the car. Which was at least a mile away over terrain which in one direction was completely unknown and in the other direction would include going up the slope that I'd already needed help to get down.

I got out of the chair again and we all took a closer look to see how much of a field job could be done with the tools we had available. We hadn't lost any bits, and it seemed to have simply untwiddled itself rather than having sheared away or anything, so that was good. Unfortunately, Steve realised that lining up the bolt that had come out would mean undoing the second bolt as well to take the whole wheel unit right off, in order to align the whole thing properly for both bolts to go in together.

Being out and about, especially in nature-type places, always gives me a sort of thrill that people who've never been housebound don't quite get. Look at me, how daring I'm being, not only out of the house, but a mile or more away from the nearest car. Which is great until the point you're sitting on a dirt path, knowing that yes, that's right, you're an actual mile or more away from the nearest vehicle, and trying to stay calm while someone fully detaches a wheel from the object you depend on not just to get back to a place of safety but to move around independently once you're there.

Of course it could have been worse. There were three of us. It was a sunny, dry day with about eight hours until sunset. We were on an "official" path, we had phone signal, a picnic blanket, and plenty of water. I was hardly at risk of life or limb. I trust Steve, and I know that he has more mechanical ability than I do, and I know that he's read the manual, and I know he won't put me at unnecessary risk. I was happy to let him lead the repair effort, and he kept me informed and waited for my permission at each stage. Even so I was only one notch off a panic attack at the point the wheel was entirely removed.

Thankfully my faith was not misplaced. Within a few minutes Steve had got the wheel back on and we were able to move again, albeit somewhat cautiously and with all three of us continually peering at the chair every few minutes. The rest of the path was much kinder, and bit by bit we reached the visitor centre, got some lunch, and then I installed myself on the picnic blanket within not just sight but wobbling distance of the car.

On our return home, Steve tightened up every bolt he could find on the chair, using the Official Toolkit. Apparently most of them were pretty tight and the ones on the right front wheel were basically immovable, so we don't know why the left one managed to work loose.

The bad news is, now the car has started making a funny noise.

Sunday, July 06, 2014

Dining style

Technically we don't have a dining room. We have one long main room (about 8 metres or 26ft), that sort of gradates from the TV, sofa, and wall of books at one end, through my office-like zone of computer desk, filing cabinet, shelves of ringbinders, to the end near the back door where my wheelchair and the laundry stuff lives.

Growing up, for me, dinners were always, always eaten at the table. Without exception. If you were ill, but still had an appetite for your dinner, then a concession might be made that you could put an elbow on the table to prop your weary head.

There followed a steep learning curve in my mid-late teens as I started taking some meals at friends' houses (which often meant bedsits or houseshares) and experienced the excitement of eating takeaway or ready meals from the carton, often with a plastic fork or even with fingers, while sitting on the floor, or a sofa, or a bed! I learned when someone hands you a college folder or a freebie newspaper at dinnertime it's so your lap doesn't get burned, not because they want you to read it. I learned that cushions are more comfortable but less disposable, especially in the context of sweet and sour sauce.

For their part, some of my friends were caught off-balance when they would come to my house and their plateful of dinner was placed on the table. To this day I know my mother winces at the memory of one of my sister's ex-boyfriends who would sit at the dining table with one foot on the seat of the chair, his knee up by his shoulder, and walk away as soon as his plate was empty without so much as a thank you. I've got to admit that, given the choice of which scenario I would rather be unable to cope with, I think it's better knowing how to sit and eat politely at a table.

When I moved out the first time, into a shared flat, the three of us didn't have the resources for much furniture. The part-furnished flat had come with a cooker, one bed, one ancient sofa, and one coffee table. The crockery we had scrounged was my mother's twenty-year-old "best set" that she had recently acknowledged was taking up vast amounts of cupboard space, had no cash nor emotional value, and was considerably less attractive than the new set of everyday crockery she'd just bought. A slightly bizarre situation then arose where cheap student-y meals at the flat were eaten around the coffee table, but from highly incongruous floral-patterned china.

Back at my mother's house, things had become a bit more relaxed. Some meals would be eaten at the table, others in front of the TV. Having the choice was nice, and when I moved out again, this time on my own into my tiny weeny shoebox-sized flat, I bought a cheap second-hand drop leaf table and chairs (like this) so that I could continue having that choice. The room was far too small to allow the table to open fully, but being able to open out one half of it for the duration of a meal was definitely a bonus. Not to mention that being obliged to fold it away again at the end of the meal meant it could not suffer from Flat Surface Syndrome.

With Steve, dining was not originally, an issue. I would come to stay for a week, we would spend that week mostly eating food at restaurants. He also had a folding dining table but as we discovered when we tried to use it, the leaves could not boast stability in the horizontal plane as an attribute. To press down with a knife or fork was to risk a lap full of dinner. Over time, we formed a habit of eating in front of the TV, and even bought a couple of proper, cushioned, wipe clean dinner trays to make it easier.

Only in the last couple of years did it register to me that it wasn't really easier. All through my teens and early twenties I'd felt that non-table dining was more relaxed than going to all the fuss and trouble of laying a table and sitting up straight. But now... getting older and (why not admit it) bigger and less flexible... I found that for a lot of meals it was quite awkward. Having a meal with gravy meant not being able to stretch or lean to get my drink off the floor. Leaning back meant drips on my clothes. Sharing items and condiments ended up neglected in the middle of the floor because they couldn't be reached for mid-meal. When I was tired or in pain, the plate was just one more thing to try and factor in to balancing. As for having people over for dinner, well, for anything apart from pizza it was outright embarrassing, especially when they declined a tray and didn't know about using the freebie newspaper to protect the cushion...

Dining table

The table is solid mango, the chairs are solid oak and surprisingly comfortable. It's Proper Furniture. The whole lot is heavy and sturdy enough to lean on when standing and I can see it lasting well beyond the five-year warranty period. And! Sitting at this table to eat our dinner is so enjoyable. Especially for sharing foods, like bread and salad and fajita fillings, to sit with a plate in front of you and help yourself from a central dish is just better.

Of course this does mean we'll have to sort out the decor of that blank wall. And the light fitting in that part of the room is frankly tat. And I've been thinking about curtains...