Friday, October 21, 2016

Pros and cons.

Today I found myself on my arse. Again. I was alone in the house. Again. Being alone and on my arse seem to be connected. As some point of being alone, I think I must fling myself about, and mis judge the landing part of transferring. My spatial awareness must be off, or maybe I should wear my glasses. And when The Good Man  returned (looking lush with his haircut) I got to experience how his hoist homework, was paying off. Both he and I were more comfortable. And it turns out the physio, the expert, had got it all about face. Sometimes it pays off to be your own expert. So, using it correctly was a bloody breeze! And  I declare it a success. Anyway, I had taken the opportunity, whilst on my arse, to clear the space under the bed of my shoes, as our new bed has arrived.  And my daughter, queen of flat pack, a skill she inherited from me, is coming over tomorrow to tackle/assemble it.

And I had completely forgotten that I'm out on Monday with friends. Luckily, I was reminded by one of them. Although, my no cake stance was rejected.... I'm going to have to be strong.....hhmmm, we'll see how that pans out.....

Also, my new chair will be accompanying me. I picked it up yesterday and it's a bit of a beast.

•It's so damn comfy.
•It folds down really well.
•The self propelling bit has a rubbery easy grip surface, even in the rain, and won't get cold like the metal one on my old chair.
•It has a finger guard.
•The seat cover is removable, washable AND tumble dryable.
•It has an adjustable back.
•Accepting it put me in the system.
•The arm rests are like a thick spongy rubber that won't get cracks or holes.
•The brakes can easily be flipped out the way, so don't stab you in the leg, when transferring.
•It has Anti tip bars!
•It was FREE!!

•It's so wide, and that makes self propelling difficult.
•The fingerguard is plastic, grey and ugly.
•Additional seat covers are £75. £75!!!
•The back can't be adjusted by me, when I'm in the wheelchair.
•The turning circle is huge.
•It really struggles on carpet.
•I had no say about it. Get what you're given kind of thing.
•The arm rests are too low, and can only be adjusted by someone not in the chair. i.e. Not me.
•As there are things about it, that needs someone else to help me adjust, my independence has taken a bit of a clip on the wings. UGH and BAH etc

So, Pros V's Cons are pretty even....part love part hate......
What to do? If I keep it, I'm in the system. But do I want to be in the system? Dunno. I know it makes sense but fuck, my home, my precious sanctuary is under threat, as it houses 1 scooter, 1 hoist and 2 wheelchairs. You might not think that's much to have in your house, but now think where you'd put them in your house.

Today's list of thanks goes to family, friends, the NHS and YouTube.

Enjoy your weekend.

Thursday, October 20, 2016

Today I went with my daughter, to see her try on wedding dresses. Luckily, she had already been, with her twin, and so she knew which dress she already loved. And I say luckily, as I still shudder at the memory of shopping with them both, for all things prom. The vast shopping centre in Sheffield, Meadowhall,  saw my inevitable breakdown, as we went from one shop to another X one hundred, and back to the first shop to buy the dresses that they both tried on first. The shopping centre is now fondly known as Meadowhell.

So, back to my daughter. Her favourite dress was tried on, and she looked lovely, but unsure. So she tried on another two, also lovely, but not really her. Back to her favourite, and this time, unsure was replaced with confident. And nothing says BEAUTIFUL like confidence.*

There was a dress there that was just under FOUR THOUSAND POUNDS. I mean, you're asking for a slap if you'd seriously consider spending that much, on a dress, for one day. And if I were your dress buying companion, I'd gladly dispense the slap. 

And how the hell have I got a daughter that's old enough to be  getting married? Dunno. And also, what is it with the mother of the bride crying? If she's happy, I'm happy. Saying that though, wedding dress shopping = no tears. The day = no promises. But then, my youngest daughter called me a frosty bitch the other day. I can't remember what programme we were watching, but I kept my normal TV watching face, whilst she was a mess. I can't make promises either way about how it will go on the day. But I will be wearing make up, so that means unless I want it to all slide down my face, I'd best not. Especially as tears are generally accompanied by snot. 

Tomorrow I am picking up a new wheelchair. The situation surrounding this wheelchair to my first, is so different. First time round, despite my very desperate need, I was told I would have to wait MONTHS to just get assessed. To be fair, I did get a phone call from someone about it all. I was asked if I could sit up unaided. When I said yes, I was informed that other people were more urgent, and that I'd have to wait. AGES! I understand that there will need to be a pecking order of desperation. But for every single person needing a wheelchair, it's pretty desperate. So, no choice but to get my own then. I found a wheelchair place, put my order in, and it was built, and my legs for MONTHS, before I even got a call from my local wheelchair services. Moved one county over, and someone, a physio I think, told me I need a new chair. I was sent to wheelchair services pretty much straight away, and it's been weeks rather than months waiting. I'm quite excited actually. Especially as it will have antitip bars. So no more cracking my head on the pavement, or in the garden or pub car park. Can't say I'll miss that......ooh, I wonder what colour it is??

*Confidence = beautiful. Cocky = ugly. Try not to get them mixed up.
 That might also earn you a slap. 

Saturday, October 15, 2016

Yesterday was one of those days......started perfectly.....breakfast of thick pancakes, with a vanilla flavoured dollop of something, and red berries and blueberries. And of course, a cuppa. And then the hair pulling distress started......we need a new bed, and we've known this for a month or two, but it took until tonight to get it sorted. Still, sorted it is, and it arrives on Friday. I'd found a bed that I really liked, but The Good Man was having none of it, as he thought the legs were too spindly. I said they weren't. But he was adament that they'd break, in a scenario that also involved him breaking a leg. I thought he was being a drama queen. He started grunting about the whole thing. And it's taken until now for me to remember that, a few years ago, he had earned the name 'bed breaker' This was due to a visit to a show home where he dropped, rather than sat, on a bed, and it collapsed. As did I, pissing myself laughing at his misfortune. So he may have had a point. But don't tell him I said that.

So come delivery day,  I think I'll take to my bed, wrapped in my pink alpaca blanket. That sounds confusing. I doubt the alpaca was pink. But the blanket is. It's so incredibly soft and light. Seeing it plonked on the bed, daughter number 4 was concerned that the Good Man had bought a pink poncho. I don't have much to say about that, except that thank f**k, she was wrong. She also proved to be very useful, as when she got in, I was suspended in mid air. I hate having a hoist, but today, even more so. I'd collapsed on the bedroom floor in a slow melting stylee, in perhaps the most awkward spot. I was in the house on my own, waiting for the Good Man to return from Birmingham, and collecting the Little Man from his friends. My legs were all tangled like a Betty Spajhetti, the floor was cold and hard, and my mood was not joyful. Back to me in the hoist.....I'm off the floor, suspended in mid air, trying not to lose my shit. The sling was bunched up and cutting in to me. I expected to hit the floor at any minute. Now, whilst I can't laugh about it, the feelings of shame have subsided. Actually, that's bo****ks. I do feel shame in how my body has let me down. But anyway, the Good Man needs to get some hoist practice in, so please make yourself known, if you're willing to be a levitating guinea pig.

And also step forward if you can help dismantle a bed, and put another one up.
The sounds of my house = daughter hoovering. Dog barking to announce arrival of friends.
Washing machine spinning. 

Monday, October 10, 2016

Since we last spoke, my husband had a weekend away with my brothers. Their weekend consisted of food, alcohol, hot chocolate and hills. Whilst The Good Man was absent, my oldest friend came to stay with The Little Man and I, by oldest, I mean the person that I've known for ages, not that she has clocked up some years. Another school friend came over on Saturday night, bearing a bag of veg that she'd grown. So our Saturday night consisted of wine, memories, chocolate and veg. Wild. I shouldn't be able write actually, as every time I heard the C word, or said it (Christmas, not c***) I shot myself in the head. With the gun that I don't possess, but you get my gist.

I can't remember if I've said about the new wheelchair that I'm getting? It's being provided by my local wheelchair services FOR FREE! It should be nearly ready by now, and I'm excited to meet it. Wheels, in my world, are the new legs, so 10/10 to whoever invented the wheel. The new one will have a lot to live up to......light, micro turning circle, collapses small enough to fit in the boot. A list of three demands should be do-able. Well, I hope so.

QUOTE OF THE WEEK goes to daughter number four.....'I hate adulting'

She's got a point.....being an adult isn't all it's cracked up to be, when you're a daydreaming child. All you think about as a child are the possibilities, rather than the how. And I'm NOT going to shit on their dreams. It was not a dream of mine to have a brand new sparkly wheelchair. But it is now.
AND happy turfing dreams, start tomorrow. EEEeeeeeeee!! So that'll be a scintillating conversation to have with my veg growing friend. Her lumpy bumpy carrots tasted awesome!

Thursday, October 6, 2016

All lives matter.

  • Tonight, I watched a programme, that made me cry. And I have been called stone faced....I don't cry easily. Anyway, the programme was presented by actor Sally Philips (Smack the Pony, Miranda) and she was exploring the way in which screening tests are presented to expectant Mums, and the language used. And even calling them 'screening' tests hints at the leading language used. It's also devisive......your baby is perfect. Or it's not. According to whom? And that's just the beginning of a lifetime of division......

Sally Philips has a ten year old son with Downs Syndrome, and as more and more people abort babies with Downs, what message will he get from that? Not a good one.

In Iceland, the termination rate is 100% for known Downs babies. The programme featured a clip of Sally talking to a young lady, with Downs. She could speak English, as well as Icelandic. But how do you go about living in a country, where people have deemed themselves unfit to raise a child with Downs, or have decided that they don't want a child with Downs. I'm not suggesting that it's a decision that's made easily. Far from it. It also featured Karen Gaffney, who has Downs, giving a TED Talk. She was incredible and I plan to watch it all later. Now, I would shit a brick giving a TED talk, but not this young lady. She was so calm, and looked so comfortable. Her talk was called All Lives Matter. And I've pinched that for this blog. Thank you Karen.

This got me the future, will other diseases or syndromes be identified? Or a risk assessment made about diseases/syndromes occurring? Like cancer or Multiple Sclerosis for example. Now, I wouldn't wish MS on anyone, but would I abort a baby that had that in their future? No. I'd had four of my children pre diagnosis. One or all of them may develop MS. And I had number five, after my diagnosis. I was 39, so my risk factor had increased for a child less than perfect. But I am less than perfect too, so I decided that I'd take and love, whatever came my way.

*I don't know how I made that first paragraph move in a bit, with the black dot. And I don't know how to undo it either. So, sorry about that. I'll try and get a lesson later.