Community Transport

One of the things I have to do from time to time in the course of my job is go out somewhere with other disabled people en masse. I don't mind this at all, it doesn't bother me and I don't even notice who is and isn't disabled any more. What I do hate is having to use the wheelchair accessible minibus. God I hate it so much Id rather drag myself 20 miles than sit in it. Unfortunately I haven't been given the chance to try the dragging thing, so Ive had to use the minibus. If there is one way to feel helpless, institutionalised and different it is this. I cant describe how it makes me feel to use it, like a pile of **** I suppose. Its obviously me, I have a problem with coming to terms perhaps? No I don't think so, what I don't like is being singled out as 'different' and also the fact that I have no control whatsoever. The process is long winded and embarrassing.

You first have to queue up at the back of the bus while the driver gets you on the tail lift. Whoa!! Scary, believe me. Then you get in the bus and all being well you get tied and ratcheted down. This is the bit I don't like. No say, no control, you just have to sit there and be helpless while they do it to you, making polite small talk as if you lost your marbles years ago. There's no seat belt system either, so I always feel perilously unstable. The driver heads off, you are all facing the front like sheep and as he takes a corner, you end up swinging sharply to one side. For me anyway I find this gives me a lot of back trouble. Its not until you are trying to keep yourself steady at times like this you realise that muscles in your lower back aren't what they were.

I feel as if I might as well have a flashing light on my head and someone walking ahead with a red flag, and while we are at it we could have CRIPPLES on the side of the bus, such is my embarrassment and discomfort at having to use this type of transport even occasionally. I know they do a good job for loads of people across the country and while we continue to have inaccessible buses it's needed even more than funding allows. But please, please not for me.

Humbug!

Christmas is coming and I'm having an attack of the humbugs. Let me say I'm not opposed to the principle of Christmas, what I cant stand is that it starts at the beginning of November and is the relentless march of consumerism right into the January sales. Its also brings the mass hoards out shopping.

Ive noticed this a lot more over the last couple of weeks during which time Ive been sat upon, fallen over, kicked, walked into, pushed, rammed with a trolley and so on, more times than I have in the last year. Now I suppose last year I didn't go shopping very much anyway and when I did I was far too self conscious and embarrassed to even notice if anyone one had bashed me. I know the trials of being 3 foot tall are many, but being run over by trolleys when you are out shopping shouldn't be one of them.

So beware anyone out for a stroll around your local Asda or Tesco, don't forget to watch out for wheelchairs or just little people. They could be round that next corner just waiting for you to run into them.

Where did I go?

As you can see I havent posted for a week or so. Unlike me for sure, and no particular reason. Mostly Im just feeling damn tired and am trying to get some ZZZZZZ's in, as much as possible. Also I guess everything has been quiet all told, so not much to talk about really. But I intend that to all change, as Im now back online and ready to blog!! Speak soon!

A High Point

....Or Not......

Im seeing my urologist on Friday having spoken to her only yesterday, but today a small box arrived for me containing some 'things' to be going on with. There were a selection of different catheters, and oh yes Ive really been wanting to try this ( I dont think so) , the Peristeen Anal Plug. Mmm-mmm!! Oh my, oh joy, how wonderful surely?!!! How lucky am I do you think?

You can see from previous postings that its been discussed a bit before, but Ive been able to put it off. I really can say this is unpleasant. Its not unpleasent in a physical way, I cant feel anything, its just mentally its not what you hope for. I dont think any one can say they honestly have aspired to being incontinent or overcontinent. Its one of those little secrets you hold to yourself, no one knows except you and maybe other people in the know who might guess.

Personally Im not sure if I should laugh or cry, its probably better to laugh at life because this seems to be almost absurd at times. But also its reality, but Im not sure I want to be there with that.

So reality wise I will now practise popping these things in my backside, going off to work in the safe knowledge that all will be well and coming home again. I do actually feel a small sense of relief about this, now if I can get some stability around my bladder Ill be a happy woman by the end of the week.

BANG!!!!

My car blew up on Sunday night, or more precisely the head gasket blew, and it really did. We were cruising down the A69 at a fair rate of knots when it suddenly happened. Stem and smoke poured out the bonnet, the car came to a sudden halt and that was it. We were relayed home by the AA and so we are looking for a new car.

After an hour of panicking we decided to get a shiny new vehicle on Motability. This means I get it free and don't have to do anything about servicing, repairs, breakdown, blah de blah. Cant wait. So what to get? The choice isn't that great actually, as I must have an automatic, we are down to a couple of choices, a Nissan or a Chevrolet. I'm not fussy as long as it has 4 wheels I'm not that interested. More question of how quickly we can get it I think. So we are off to look t a few makes tomorrow. Mmmm Cant wait!!!

Suffering

I don't like ever to say I'm feeling unwell to be honest. I do a good line in non -conformist stoicism, but I have to admit defeat at the moment. I'm suffering really I am, all the time. I'm getting no relief right now at all. The main problem is my bladder. Its killing me. I spent 2 hours in the bath last night in tears because it hurts me so much. It hurts when I'm cathing, it hurts when I'm not. I have a permanent UTI which is really nasty. You can see how Ive written about it before. Its just relentless. At the moment I'm alternating between over continence and in continence. Most of the time I couldn't go if you waved £10000 in front of me, then suddenly without warning Ive wet myself. So far Ive wet myself at work, in the car and at home. I'm currently wetting myself every morning as soon as I get up. Basically once Ive started to physically get up, I cannot get to the bathroom before I'm very wet. I hate this I really really do. Its just THE most awful thing. So I'm speaking with my urologist tomorrow and asking for an indwelling to be put into place. This is a permanent tube put up into my bladder, held in place by a small balloon. I then get to use a nice selection of leg bags with it just to add to the humiliation. BUT, you know right now I don't care one bit. Don't care how humiliated I feel, I really cant stand this awful bladder pain.

On a related issue this seems also to be affecting my bowels. I presume its the same nerves or something that controls both. My bowels are not great, and I'm experiencing leakage I don't know why Im writing about this, but I'm trying to keep it in the spirit of honestly and openness that I started. One thing I do know, and I'm telling you right, here and now, I am NOT NOT wearing a nappy and that's it. I want another solution.

Christmas at Kielder

Despite all my protestations at not doing Christmas, short of taking a holiday in Saudi Arabia its hard to avoid so we are doing the Santa thing at Kielder Forest in their Winter Wonderland. I phoned and booked the tickets today and told them I needed wheelchair access. Not only do they have that, but I was informed my son will be taken on the wheelchair accessible route so we can all go together. Sounds good doesn't it? I'm not getting my hopes up too much as often these things can turn out to be a disaster i.e. someone has decided the accessible route will have 3 inches of gravel. But we shall see. I'm hopeful that it will be good. After all I'd really like to come back and write a really good report on it. You get sick of moaning sometimes.

Sorry its looking dull isnt it? Well, I will try to post some more pictures, promise!

All for the Best?

I'm currently picking over an autobigraphy by Mark Zupan. If you don't know who he is then hes the scary looking blond guy with attitude who plays Rugby for the US paralympic team. Hes quite a figure and has been very successful both sporting and otherwise. The main gist of his book is that his accident is the best thing that ever happened to him, hes quadriplegic, but reckons without this he'd have drank himself to death before he was 30. To my mind that's a very brave statement to make, but one I can empathise with, although personally I don't think I'm brave enough or mad enough to say it myself. BUT what is true is that sometimes big life events comes long and hit you with such force, you can either give up and die or you can take what you have left, move on and not be afraid to make those decisions you put off thinking about when life was cosy and normal. When everything is going you know, OK? Life isn't bad, but not exciting, its so easy to be stuck forever in that little rut. You'd like to change it but dare you? Sometimes you are forced to dare.

For me my essential personality helps, I must be one of the most stubborn people I know, I will never back down, I would look the devil himself in the face before I gave up on something. It saved me I know from times of real despair, but I have to admit I'm thankful for the opportunity this has given me to look at my life with different eyes. To not be afraid to take a rash decision, to give things a go, to even maybe a better person. I would hope so anyway and I hope those who know me would agree.

Prism Arts

I meant to write about this but got sidetracked somewhat. Last month I went to an interesting day hosted by Prism Arts at Rheged, Penrith. As a venue its OK , but has limited disabled parking and loos, but to be honest I don't tend to worry about toilets very much these days!

Anyway Prism Arts run programmes in theatre and expressive arts for people with learning difficulties across Cumbria, and they seem to be a dedicated and successful lot from what I have seen. Apart from putting on their own performance, there were several speakers, workshops, music, comedy and a fairly OK sort of buffet.

The thing with buffets Ive found is that no one gives a thought to wheelchair users. Its not too bad if you are 6'5'' and have enormous thighs, but as a short female I don't. So you are stuck with a paper plate balanced on your lap trying to get a bit of food before it all goes and also trying to make sure it doesn't fall on the floor. You have to wheel yourself around the tables as you do this. Then try to pour yourself a glass of juice or a cup of tea. Take it from me, get the cold drink. You get a bloody saucer with hot drinks to start with. I mean you try balancing tea and coffee on your lap while you move off into the distance.... certainly doesn't work for me I can tell you. At least with half a glass of something its usually possible to ram it between your legs in a hope it will stay there. So I did get some food, but not enough to drink.

In the afternoon there was a very good comedian. I sat to one side of the audience and watched everyone enjoying themselves. My, how my life has changed in a short space of time. What am I doing with all these disabled people? What has my life become? Its not bad, not bad at all, but really its nothing like I imagined it would be a few years ago. Then I was standing tall, and now my view of the world is from sitting down. Believe me I see it as very different, I don't know if I will ever get used to it. Perhaps I will, time does heal all after all.

The Acceptable Face

Someone I work with told me today that I was 'the acceptable face of disability'. Its true I suppose, although I admit it grudgingly. From the point of view of the general public I dont look too disabled, I'm pretty normalish, not scary and can hold a conversation without slurring my words. But its sad that society still sees disability in these terms. Its no use denying it either, it does and will continue to do so for some time I imagine. So it will be relatively easy for me to progress in life with this minor disability. If for instance I had a severe facial disfigurement, even though Id be far more physically able than I am now, I guess the world would be very much closed to me. We live in fear of what we don't understand and what we find frightening. If I'm sitting at a desk, you could hardly tell, but an obvious deformity can never really be hidden. And should it that's the question? Of course it has been argued that we are all equal. Quite, that's what we like to kid ourselves with, but some are always more equal than others.

Midwife

In my naivety I thought this pregnancy would be the same as the last one. Physically for me so far so good, but medically, boy its a world of difference. So far Ive seen the Obstetrician twice, my GP once, and the midwife for the first time this week. On past form a trip to the midwife consists of how are you, whats your blood pressure and lets take a blood sample. See you in 8 weeks or so. Ah, not this time, my incapacity means I now get number 1 A*** treatment. I said to my husband it would take about 25 minutes or so; an hour and a quarter later I emerged worn out and shattered. Good grief, so many questions, she wanted to know absolutely everything about me medically in particular and also socially too.

So she took a fuller than full medical history and of course found my back totally fascinating. Obviously a first for her!! She also took great interest in my bladder, naturally doesn't everyone? And wants to see me again in 3 weeks not the usual 6 or whatever.

Now seems so far that my birth options are very much Ho hum nobody knows. Id like to have Hersh minimus in Hexham, but this doesn't have special facilitates should we need them, in which case I would be whisked off to Newcastle. Bit of a nightmare. So will I be able to push OK? Will I feel anything? Will it hurt more than usual, Will I need an epidural, should I have one? Could I have one? Will I need one anyway? Is my spine actually up to the job? Would I like an elective Cesarean perhaps... ( No thanks on that one). At the end of the day, so far anyway, no one really seems to know, and neither do I. I understand that all these things are person specific, but it would be nice to have a bit of reassurance somewhere along the way.

Im back

You may have noticed that KBO has been very quiet this week. Thats because Ive had one hell of a virus thanks to my gorgeous son who brings these lovelies home from nursery, which he proceeds to share with his Ma!

So I have been pathetically lying about the house coughing myself to death. Conversation? Forget it! A quiet few days for my husband anyway. Ive even spent 3 nights downstairs because I couldn't get up the stairs. Not like me for sure, so I must have been bad. Finally after 5 days I'm feeling better, so be prepared for further thrilling installments.

Tax

One of the huge advantages to being disabled... oh yes of course.... is free car tax!! Today I got mine for the first time amazingly. What happens is once its been decided you are disabled enough to qualify you get sent a funny yellow certificate which allows you to tax one car free of charge for a year. It has taken me months and months and months and even more months to get my certificate which means Ive had to pay when I shouldn't. I phoned them, asked for a form to request a form... and then was told they hadn't got my request for the right form, and so on. I don't know why you just don't get one sent out automatically.

Anyway the advantage for me is I unashamedly drive a large 4 x 4 with a big engine so no incentive for me to get a little car. But anyway don't get me started on that one. Its a funny thing actually, I feel a bit self conscious going into the post office to get it. Like of course I'm so inconspicuous, especially round here. Funny thing is it makes me feel like a real fraud......perhaps its the concept of claiming some sort of benefit I don't like. Its not that I'm proud but I feel its for other people not for me. get over it woman!!!