My Fault!

Oh its my fault of course and I hold my hand up and take full responsibility BUT........ when you main mode of getting from A to B is wheels, when the wheels fail you are well and truly stuffed!!!!

Id spent last night doing some routine wheelchair maintenance, nothing major, some tightening of bolts, some slight tweaking, redoing the upholstery and straps, you know the sort of thing, and oh yes, I altered the foot plate. Actually I don't have a plate, not those large ones you see on chairs used by older people, what I have is a bar, because it reduces weight and I'm a minimalist sort of woman anyway. My own preference is to have it quite high, so my knees are high, this means I get more resistance when I lean forward and its a bit better for balancing the baby. Anyway I decided to raise it by about a centimetre or so. No problem, done and dusted....... or so I thought!

Today we took our son to Rheged where I was meeting a friend for lunch and he could play. My husband wandered off inside while I got out the car, heaved myself in my chair and Sh** the foot bar fell off!!!! I spent 10 minutes trying to hammer the damn thing back on with absolutely no success whatsoever and then to add insult to injury my cushion fell off into the road and a nice motorist had to stop and rescue it for me. By now I'm shouting Bollocks bollocks bollocks quite loudly to no one in particular. Hmmm I though perhaps if I take my shoes off......? I usually wear quite heavy shoes as I find they tend to keep my ankles straight. So at this point I have 3/4 of a working chair, Im sitting in the car in the pouring rain, no shoes on and I'm expected for lunch. Wonderful. Its times like this that I really feel like saying F*** this disability stuff Id like my real body back please! In the end I had to swallow my pride and make my way in with no shoes on and dangling feet. To say I felt utterly ridiculous is an understatement and if I didn't feel cripply before I certainly did then.

But like I said, it was my fault entirely!

Goodbye Tony, Hello Gordon.

Well we have a new Prime Minister and a disabled one at that. What? said my husband he kept that quiet. Yes I suppose he did didn't he? But our Prime Minister is blind in one eye and pretty much partially sighted in the other. He has to have official document's made up in large print for him and that's why he looks as though hes squinting all the time, and appears somewhat dour. Its actually because he cant see very much, I have it on ministerial authority anyway. So Gordon chose not to make this widely known, although it seems to be by now, why is this I wonder? Was he actively seeking to avoid the stigma of disability or is it something else? Personally I think its pretty much his business, just because you have a disability it doesn't have to define you. I know quite a few people with less obvious disabilities who wouldn't dream of telling people unless really necessary, like sexuality and religion, I don't think its really anyones business, that is unless you want to tell people. So do I think Gordon will bring a better deal for disabled people? I'm not holding my breath for particular action, but what Id like to see myself is more help for people to get back into some kind of work, but at the same time more of a recognition that not everyone is capable of doing a full time job in which they can support themselves or their family. There needs to be a bigger financial safetly net to avoid the lifelong benefits trap. However my real hope, and like the idealist I am, I always feel a surge of renewed optimism for the future, my real hope is that Gordon Brown can keep his integrity when others lose it, can march forward with his convictions as strong as ever ensuring the welfare of this country and bringing about a better and more hopeful future for us all. Personally I have a bit of a soft spot for dour Scotsmen!!!!

Moan!

Its very easy to become inward looking and preoccupied with your own state of health. If you're not careful you become a real bore when it comes to chatting to people about yourself. How are you? they ask, and this gives you the nod to launch into a 10 minute speech of how ill you've been, how many hospital appointments you have, how useless the medical profession is and how its all futile because you're going to die anyway. I know people like this, so I try to take inspiration in how not to be. I don't want to be judged by my incapacity, which isn't easy as its sort of obvious. Its not like I have a hidden condition as such, so I cant pretend it doesn't exist. But when I'm asked how I am I'm always fine. Oh yes Id be fine if my head had dropped off! I rarely tell anyone I'm not fine, as most people don't want to know anyway, and those who do, don't want to hear me moaning non stop about some aspect of my life. Of course the irony is that's exactly what I do on this blog. Moan. I can moan for Britain, but then it doesn't matter if I do it here, I just don't want to do it to people I know.

No Room

On the back window of my car is one of these little blue stickers that says something like Please leave room for my wheelchair, Disabled driver on board. I think Id prefer something like Don't park too close you selfish sod! Anyway it was my husbands idea as he was fed up with people parking within a few inches of the back of the car and then he struggling to get my chair in. When I'm out on my own, I just end up trashing the inside of the car so it makes no difference to me. But we were out en famille yesterday and I parked in a really out of the way spot in Hexham, I mean the town was deserted and parking plentiful, no problem for anyone. So what do I find on my return to the car? Oh yes some ***** had parked literally with 2 inches of the back of the car meaning that no one could get into the boot. There was no reason to park there in the first place, so what is it with people? Stupid, selfish, ignorant or just don't give a damn. The latter I think.

Almost Wheelchair Junkie

Ive always been the type of person who has enjoyed taking things apart and putting them together gain. Give me a socket set and some power tools and I am indeed a happy woman. My pet projects were usually the car and my bike which is a childhood thing I suppose. Now I cant reach under the bonnet without falling over anyway and I don't do bikes anymore either. Soooooooooooo................... what I do do is wheelchairs, and Ive just notched up a 3rd one which might be a bit zealous on my part, but hey I cant let a bargain go by. I mean how many do people have anyway? Whats the average number? Let me know! So my makes of choice are RGK and the US make Tilite, hugely expensive, quite rare over here, but comfy and as light as they come. Make my RGK look like an old Volvo! Anyway I came across a Tilite TR, nice condition, not overly worn out or knackered, just needs a bit of a clean and some new tyres.

Hmm I say, how much do you want for that?...... Looking nonchalant.

Dont know he says what do you think?

£50? I say.

Ok....... sold to the woman in the chair!

So there we have it, Chair 3 is a nice Tilite TR fixed frame. A bargain, and I will have hours of fun cleaning, putting on new tyres and fiddling with the Allen keys. Im easily amused as you can tell!

Friends Reunited?

Every so I often I like to have a look round friends reunited. We've all done it, how many times have we found someone we went to school with and thought *******, they were the thickest in the class, and now they live in Norway with their own fabulous business and handsome/beautiful Norwegian spouse.......?! Or something like that anyway! So I was looking this week and came across someone who was ostensibly a best friend during my teenage years, and our parents are still very good friends as well. So whet do I do? Do I drop her a line and say nothing, do I say hello and spill everything, do I try the tactful approach, or maybe just letting sleeping old friends lie is best? After maybe that's better than having your mail ignored. Hmmmmmmm..........

Lonely

This disability thing can be a lonely life. Well it seems that way, its hard to keep up the intimacy of friendship when you only ever meet friends on neutral ground. I spend my life meeting people in Tesco and I'm really sick of the place. No one ever invites you to anything once the wheelchair has to come long too, they seem to assume you cant go, get in or wouldn't want to anyway. The invitation would be nice and who knows it might be more possible than people think. Worth a try anyway. So its hard to keep old friendships going and even harder to make new ones. Perhaps its because I lack mutual ground with people, certainly things have shifted, but perhaps not as much as people assume. Maybe its shifted more for them than me. I dont know, but I'm tired of feeling left out, feeling as though I'm sitting on the sidelines. Only that's the trouble I am sitting on the sidelines. I think its hard for my husband even more in some ways. His friends never invite us anywhere either and with about 2 or 3 exceptions I don't think Ive seen the inside of anyones house in a long time now, well, seems like that anyway. No invites to lunch or dinner, no chatting over coffee, no invitations to pop round. It just doesn't happen. You know I think its my biggest loss, not the loss of the physical, but the loss of the smile, friendly word and companionship of others.

Past Life

When I was about 7, I went to tea with my best friend and found her dad at home. He was in a wheelchair and I never did find out why because you didn't really discuss that in the 70's, but all I knew was that I was frightened to death of him. He was a very nice person as I remember, but Id never met anyone disabled before and while I knew it was rude to stare I didn't know what to do or say. I wish I had. Now all these years later that is me, and my son will one day in the future bring a friend home. I'm going to be that parent and while I hope we are a bit more enlightened these days and children have seen more of disabilities I hope I wont be too embarrassing for him. At the moment hes oblivious to the difference but once he starts big school that will soon vanish. I don't know what happened to my friend or her dad as we ended up going to different schools later on, but I still feel guilty that I didn't know better.

Evil Eye

Last week we went to a local tourist attraction for the afternoon as it was raining so much I kept expecting the Ark to bob round the corner. Anyway this place has very odd parking and not the best facilities for disabled parking either, but God was smiling and despite the car park being full - the whole of Cumbria was there - there was one blue badge spot left, which I got. So we sat there for a few minutes, I was chivying the boys along and thinking Id like it to stop raining just a bit when I noticed an old guy with his wife sitting in their car right next to me. They must have been waiting for the rain to stop as well. The thing is if looks could kill Id be dead, as this bloke was really giving me the evil eye. Honestly he was staring right at me. And I know what he was thinking, Oh yes, how I know because I get it all the time. Wicked looks and stares from older people who assume Ive parked there out of selfishness. Anyway this guy must have had an attack of conscience because when my husband hopped out of the car and got my chair out for me, he wound his window down and started chatting to my son. Oh yes I'm not fooled I know how he judged me and it gets on my nerves.........just a little bit.

Rain

So as you know we have had rain, rain and more rain over the last 4 days. Firstly I have realised that I'm destined to be wet for at least a year as its now impossible to get out of the car with any speed at all, and out of the weather. It goes like this...chair, wheels, me, bag, baby, lock car and go............ by which time I'm soaking. Its one of life's hazards that goes hand in hand with wheelchair use. The options are ridiculous and I'm not going to draw further attention to myself my using some mad looking umbrella thingy, or some cripply looking keep dry clothing. No I will just resign myself to being wet.

Having said that, after sitting in a disabled bay in Tescos for 2 hours in torrential rain, feeding the baby and then deciding there was no point in getting out (my husband was at a meeting) Ive realised this is a wonderful way of checking out blue badges! The authorities should lurk about in torrential downpours and watch all these people who have difficulty walking, park their cars and then run into the shop at top speed. Its amazing the turn of speed an over 70 with a replacement knee can show when its raining. Now remember how far is it you are not supposed to be able to walk in order to get a badge? Its between 50 and 100 m depending on the issuing authority, so amazingly enough they will have done a good 100m dash by the time they've got into the store. Hmmmm not that I'm bitter you understand.

Breast is not best

Are you breast feeding?....... No......... Oh you looked like the type of person who would!

Grand sweeping statement there from the health visitor. So what exactly do I look like huh?! Anyway the reason for my choice of bottle over breast is selfishly pragmatic, you try holding 10lb of baby at a certain angle for an hour when you have a SCI and you will know exactly why I'm not breast feeding! At the moment Isak is killing my back, really and truly and there isn't really much I can do about it apart from try to be as sensible as possible. I'm finding it hard to sit up straight for any length of time and am slouching horribly. Anyway this is not going to get any better until he can walk so I'm just going to have to bite the bullet a bit.

Flashing Light

At the moment I feel as if I have a flashing light on top of my head that's just shouting out 'look at me'. I feel very conspicuous when I'm out with Isak, very self conscious, and even though I give a really good impression of being confident and outgoing I don't feel it. Its a good pretence. I've become very aware at just how many times people look at me. I mean its bad enough being in a chair although I don't think people tend to stare so much these days, but cripply woman with baby? Oh well there's an oddity. I feel very much as if I'm being stared at a lot, and you know what? I am, I don't just feel it, people are looking. Whats more worrying is that not only do people have a long good look at us while we are out, they are then compelled to talk to me. Complete strangers striking up long conversations. To be honest people do this at the best of times, and although it may be new baby syndrome, I havent seen it happening to other mothers, no, its down to me, my chair and a cute baby carrier. If you are disabled you will know what I mean. Remember those first times you went out on your own, remember those times when you first saw yourself in shop windows and thought is that really me? That's how I feel now, I'm a bit surprised at seeing me and Isak rolling along the street. It will pass, these things always do.

Zzzzzzzzzz!

We are not tired at all, Oh no whatever gave you that idea!

Cool Chair!!!

I was browsing the Fathers Day cards in Tesco the other day, looking for the cheapest I might add!... when someone shouts out to me 'Cool Chair!' I muttered a thanks and rolled off and then stopped in my tracks... you know how you don't aways recognise someone when you see them out of context? Well this was the case now, so my brain went....tick.... tick... tick... oh yes of course how did I not recognise her? It was in fact my GP! We are quite friendly I suppose so she then goes on to say how are you? This makes me smile a lot because surely it must be the worst question any medic can ask, and then we discussed the birth of Isak and made general chit chat. But it made me laugh to myself that I suppose not many people have GPs like that or even have such a nice relationship with them! Having said that Im sure Im one of her more interesting clients.

Happy Family

Here we are looking happy, me and my boys. Yes somewhere hidden in that pouch is a baby, hes just a bit shy of publicity!

I want it FLAT!

Ah the Freeman Hospital, Newcastle.... one of my least favourite hospitals in the north of England. Its big, unfriendly, badly designed and the parking.... oh don't get me on the parking. I mean this is a hospital, so chances of getting a disabled bay are minuscule to say the least!

Today was my first outing out and about with Isak, on my own. To be honest Ive been plucking up courage to do this as it seems a huge responsibility and I'm a bit paranoid of falling out of my chair and squashing him!. But its a case of get over it or sit in the house till he can walk which might be a long time, so I made my choice! I have mastered the art of getting him in and out of the car and also got him used to the baby carrier which now seems guaranteed to send him to sleep combined with wheeling around the place. What I hadn't bargained for is the fact that the Freeman is not on a flat site. Now listen here planners, designers and developers, we want it FLAT, FLAT, FLAT, OK?!!!!! Not slightly flat with a steep incline, no, flat should mean flat. The biggest bugbear is that the dropped kerbs are set about an inch high and the pavement drops suddenly by about a foot as you get towards the kerb. This means a. you have to hop up the kerbs and b. change your posture as you go downwards. Now, without baby I'm fine most of the time, with baby, hmmm that's another matter. I'm sure given another month or so but I'm not quite confident enough, after all hes weighing in at 10lb already so having that on your lap feels a bit odd. So rather than topple forward which although it is unlikely, you never know, I sat a minute and then pathetically fluttered my eyes at the next passing bloke, to get him to give me a hand. Well it works every time, after all who can resist my wily charms huh!!!?

Out and about

Over the last few days I have been practising taking Isak out and about and slowly and getting the hang of it. We are using the Baby Bjorn carrier which he seems to really like, its nice and snug fitting and I feel quite confident using it now Ive got the hang of getting him in without fear of dropping him! The main thing Ive noticed is that my centre of gravity has suddenly changed and I'm still rather nervous about pushing myself too fast or bouncing down a step or tackling an incline with Isak on my lap. Its sort of like learning to wheel all over again, a weird feeling. At the moment I'm not sure if I should just go with it and see how it all works out, or if I should move the wheels on my chair slightly. My instinct is to just do some careful practice and see how it works out....Anyway photo to follow.

Car Parking

There are times when you don't know whether to laugh or cry. Id always thought that attitudes were changing but then something comes along and you just feel that you've been banging your head against a brick wall forever.

Take the case of Anthony Steen, MP for Totnes. The esteemed member of parliament parked his car in a disabled parking space at the railway station as the car park was otherwise full, and was surprised to see he had a ticket when he got back. Instead of holding his hand up and admitting he was wrong, he has continued to try to wriggle out of it, making matters worse for everyone.

Said Mr Steen......."It's not a requirement that you provide so much for the handicapped and comparatively insufficient for the un-handicapped. Of course we want to help the handicapped, and of course they've got to be given provisions, but not against the interests of the majority".

Hmmmm let me see. A quick bit of research on the net tells me that there are almost 300 parking spaces and 5 disabled bays. Somehow this doesn't strike me as Over provision. So shame on you Mr Steen you should know better. DONT call me handicapped, its a term that vanished with the last century, and STOP being so patronising. Id suggest tying this man into a large wheelchair for about 10 days and then trying to get from A to B and see if he thinks the same after that. I could say more, I wont, as I think I know when enough has been said.