>You mention being in pain and having a numb bum and someone goes “oh I hope it won’t turn into a pressure sore”
>I was really excited this morning because I could finally change my 5lb lost button over on the side bar to a “half stone lost” one. Only there isn’t one!! Never mind, I’ll be switching it for the 10lb one soon enough I’m sure.
So anyway I’ve not updated for the HYC for a few weeks. I’ve been yo yo ing a bit since Easter. Went up a little then last week was back down to 5lb lost which I was very happy about.
I then decided that May was going to be a month where I tried very hard with my weight loss. I did pretty well last week before it was May in that I went to an event where they got us an individual takeaway Pizza each and I could have brought my leftovers home. But I left them there because “it’s not a waste if it’s not on my waist” Cheesy I know but it helped.
Then on Thursday I had no chocolate apart from two small chocolate chip cookies. I’d had in mind to stop on my way home from drinks with the creative writers and pick up some chocolate but I didn’t.
Saturday was the 1st of May and today is the 4th day that I’ve not had any chocolate, coke or pizza. I’ve also been trying to do small bits of exercise as well (very small!). I realise that cutting food groups out completely isn’t great but I really struggle with chocolate and coke and it could be said that I am addicted to them. I find it hard having it some days and not others so I’m trying to have a break of a few weeks to hopefully break the cycle and then I can start having them, maybe, in a more “normal” manner. Or at least I hope so.
But I’m not going to beat myself up if I slip a bit. A continued trend in the right direction is what I’m aiming for, not 100% perfect achievement. Because I’m not perfect and I don’t know anyone who is!
Anyway, now for the big news: I lost 3lb since last Monday AND I’ve now lost 8lb since 22nd February! WooooHooooooo!!!
>Today is Blogging Against Disablism Day. I’m not really sure what to write about today and I’ve been thinking about it a lot, on and off, all day.
The other night I was at an event and I got talking to an older lady. It’s to do with a project we’re both working on and we’d said we were both interested in doing a certain part of it. There were people from all over this area there but it turns out she lives in the same town as me. In fact I don’t think she’s too far from me although she’s not right on my doorstep and I’m not 100% sure exactly where she is.
So we were chatting a bit and she asked how far I get around in my powerchair. I said about going all round town and going on the train in it to Reading, Oxford, Birmingham etc. Her surprise at that was obvious – it seems she thought I’d be stuck pretty close to home (although she didn’t say so in as many words) and she said I’d have to come up to her for a cup of tea.
My first thought about that was that chances are due to access it’s not going to happen (old houses where she is I think). Then I was I wondered a bit that she had seemed surprised that I get out so much. I didn’t get a chance to think about it too much because the problems with the taxi then occurred. (Off topic update on that, I complained and have heard back they are taking it very seriously and will speak with the driver.)
But it’s a long time since anyone’s been surprised by the fact I go places. In fact, I’m not sure I remember that happening before. It problem has but not in recent memory. I get surprise about living alone, about sailing and other things that I get up to. Sometimes people tell me that the going off on trains thing is big to them. Not something like going out of the house and getting around in my own town. It’s a little thing to me, it really is.
I tell everyone that I do these things “with a disability” because I don’t exactly have a choice in the matter. It comes down to the fact that I want to do these things and to do them I have to do them that way. The choice is do it or don’t do it. Nothing more than that. And it usually ends up being more than worth it. Not always, but often enough to keep me happy and keep me trying. I didn’t tell this lady that because it was just an offhand comment she made which showed her surprise and then she was busy inviting me for tea. It’s such a little thing though that I don’t think my usual spiel would have been used there. Mostly because I was surprised by her surprise.
I probably would leave this entry here and have it as a bit of a gripe about people’s attitudes to disability. Then I mentioned her surprise to my mum.
My mum and I get on really well but at times I think that she doesn’t quite get the fight against Disablism and Disphobia. I get frustrated sometimes if she’s so OK about things that make me mad. Then sometimes her different perspective makes me think about things differently and that’s ok.
So I told my mum about this lady being surprised that I get out and about in my powerchair (and in my manual too but we didn’t talk about that). And she pointed out that when this lady was young probably a person like me would have lived in a home (institution). They wouldn’t have had the opportunities that I’ve got and that will come to me in the future.
This lady’s point of view is shaped (as all of ours are) by what we experience when we are younger and growing up. I know I can make assumptions based on things I thought I knew because to me they are “normal” and find them to be wrong. It can be quite a hard thing to realise and sometimes it’s difficult to admit you’re wrong (I’m not trying to say that this lady in anyway needs to apologise to me or admit that).
The other thing that my Mum’s comment made me realise was how far we’ve come. I can see how far things have come in my lifetime and the changes that have happened. They’re huge. But I never thought about looking further back before. And that really changes things. As well as making that tiny little bit of surprise make a lot more sense.
The only problem is, however, that I don’t think we’ve come anywhere near far enough. And that’s why days like today are so important.
>I started writing longer posts but they’ve been languishing in drafts so a quick catch all post will have to do or I will never catch up.
Really enjoyed it. I think I tend to enjoy it more when I don’t go looking for specific things as it makes it much less pressured. I got loads of information and some freebies too. Need to go through everything I got though. Mum and I both ended up with too much stuff and Mum was seriously considering having to leave some of hers there.
Ouch! (BBC website for disabled people) had a disabled comedian doing a half hour slot on one of the stages (Gareth someone). We missed it because we couldn’t get there that early but then DWP cancelled their slot so Ouch did that one too. He was pretty good although I must say I think comedy works a lot better when you’ve had a drink or in a comedy specific set up. Mum wasn’t overly keen on him to start with as she thought he was insulting but he did improve. Anyway this guy is on IV nutrition which he talked about a bit – and he pulled up his shirt to show the catheter implanted in his chest which he receives it through. I thought that took a lot of guts to be able to pull up his shirt and show off his line like it was no big deal. But of course that might be a bit like the whole “I don’t know how you do it” thing that I get with my chair sometimes when the fact of the matter is – you just do.
When we were wandering along and we found the ouch stand I said something like “oh! Ouch!” because it was one of the stands I really wanted to go to. My Mum hadn’t spotted it and had never heard of it, it seems and was all “what have you done, have you hurt yourself?”
There’s going to be a Naidex south event in London in September. I soooo want to go! In fact, one of my friends suggested we go together – that would rock. It’s not about seeing all the products and everything although that’s great. It’s about getting to be in the majority for once.
Oh and this is such a “only a crip could be excited by this thing” BUT a lot of toilet facilities at the NEC have more than once disabled loo which is great AND some of them have clos o mats. I don’t use need to use those but I was excited to see that – talk about taking accessibility to a higher level!
Actually, my first comment on the matter is more of a link between the two.
When waiting outside the disabled loo at Naidex another girl commented to me that Naidex is the only place you’ll ever queue for a disabled loo. Having been at a Challenger Class Association regatta last week, I can confirm that it is in fact Naidex and a sailability regatta (of any description) which are the only places you get to experience queueing for a disabled loo.
Burghfield is out near Reading and so we could come home every night which made it much cheaper to do and also easier because even though I wouldn’t have got any more sleep in a hotel I always think you rest better at home. In fact, my Dad clocked it and said it’s basically one mile further than going up to Farmoor in Oxford to sail just in the opposite direction and a bit of a more difficult (cross country) route. He said that means if anything ever happened and I couldn’t sail at Oxford any more. Which is cool. And also led to a brief five minutes wishful thinking about the possibility of sailing twice a week as they have sailability on a different night to we do. But I didn’t mention that to Dad – that would require too many lifts so I wouldn’t feel comfortable asking that. Plus, after a long break the Creative Writing course is restarting and I’m doing that – which would clash.
I think it’s nicer at Burghfield than Oxford. We have a really old clubhouse and they have new facilities. Nowt wrong with ours but they show their age. I’m tempted to say it’s prettier there too. Or it would be if not for the fact it’s right by the M4 and you can see the cars and hear them all the time. It’s an old gravel pit and so it’s very different to our reservoir anyway. An interesting place.
I struggle with the regattas a bit because I find being in the boat long enough to do everything basically impossible. That’s because they do back to back racing so for me there aren’t enough breaks. Being in the Challenger gives me a really long stretch which my legs need and is good for me. But it gets to be too long and then I can’t tolerate it any longer because it’s too painful. I find it very frustrating at times that this is disabled sailing and it clashes with my CP so much. Plus I sail in bronze class which means that although I now sail alone when out normally I have to take a buddy on the boat when racing (which is what I want, actually). And Challengers aren’t really designed to take two people. It works but they don’t go well like that.
So I go knowing this. And I go to take part, to sail and enjoy myself but not to be cut-throat and out to win. That was a bit tough this time because I had a new buddy who basically didn’t know me as he’s new to Oxford sailability and we’d only met very briefly before. I could have done with the chance to chat things through with him before but there was no time. He was worrying a bit about where we coming and that we weren’t doing well. Absolutely lovely chap and I think between us me and my Dad (and the fact we both said it more than once, separately too) got the message across to him. But I did miss my girls a bit who know me and know Emma’s philosophy of racing.
I’m really pleased how well I did. The fleet went out every time they were scheduled to (4 times in 2 days). And I was with them every time too. That’s the first time I’ve ever managed that. The last sail was tough because there was a very short break between them and I really needed more rest but my Dad talked me into going and seeing. I sailed for more than an hour each time too – some of my sails were only just more than an hour but still. Prior to that I’d only sailed once this year and that had been for 20 minutes!
So I did come dead last but I also did the best I’ve ever done. And I’m really proud of that.
I had a few transferring mishaps (but somehow no falls despite being convinced at one point that I would go and nearly coming out of my chair a few times too) and ended up with some interesting bruises from sailing. Including one right on my heal and one on my bum both of which are on pressure areas and were extremely painful. Those were from Friday and were still bad on Sunday. Which led to me having a bit of a freak out and having to get my mum to check those ones to make sure they weren’t pressure sores but she reassured me I was bruised but had no broken skin. I have several other bruises but those were the ones which worried me.
Anxiety has been a bit of a big problem for me in the last few weeks which isn’t fun. But I haven’t missed any meds in three whole months!
I’ve not been at CAB this week and I’ve been doing loads of fun things. I’ve also been trying to be out of my chair as much as possible (or swap between my chairs) and I’ve actually ended up having several accidental naps as a result. I am very tired still from how busy I’ve been.
As well as Naidex and the regatta I’ve
Been to the dentist and the hygenist
Been to an evening of pizza and design for a project I’m taking part in
Had lunch and a spot of shopping with a friend somewhere different to usual
Had coffee and chat with the Nano crew on Sunday which was fun
And last night had drinks with the creative writers
Read or tried to read a lot of different books – mostly classic type ones.