Lies and Damned Lies

I should be ashamed of myself as I stand or fall ( I'm full of phrases like this aren't I?!) by what I consider to be my honest and forthright outlook in life and yet at various times recently my courage fails me. I'm the type of person who would argue a point with God himself and would literally crawl over hot coals for what I consider to be right, yet as soon as someone asks me why I'm in a chair my honesty evaporates. I'm OK with people I don't know, but when it comes to people I do know or did know I'm such a chicken. I can hear myself doing it now.

' Oh you know how it is.....' I say, 'Ive a bit of a back problem.....'

'a bad back...........'

'a spinal problem..........'

'a bit of an accident.......'

I'm the queen of understatement. Because you know and I know what I should be doing is saying is the truth, but I don't. I sit and mentally squirm and wish a hole would open me up. What I'm really thinking is a. Don't feel sorry for me OK? and b. I know that you are feeling really bad for me right now but you don't need to I'm OK really. So I take this route of trying to pretend the whole thing doesnt exist or that its really not that bad after all. Its not great for my long suffering husband either as I dont think he ever knows what to say to anyone anymore. Either way its not working, but I'm not quite there yet.

Born Disabled

I would suggest that people who are born with a disability are not really disabled. Sounds like a huge statement to make and I know I'm going to be challenged but what I mean is, if you are born with something, or even without, then it becomes an intrinsic part of you, its in your make up, its part of what makes you you. You are not necessarily disabled as being abled in a different way. But acquiring a disability means that you lose something that is you. A part is gone and lost forever. I'm not saying that you don't miss what you've never had, because as the ugliest teenager in the village I definitely longed for the looks Id never had, but your perception is totally different. To paraphrase that well known parrot sketch....

This Ability is no more! He has ceased to be! 'E's expired and gone to meet 'is maker!
'E's a stiff! Bereft of life, 'e rests in peace! If you hadn't nailed 'im to the perch 'e'd be pushing up the daisies!'Is metabolic processes are now 'istory! 'E's off the twig!'E's kicked the bucket, 'e's shuffled off 'is mortal coil, run down the curtain and joined the bleedin' choir invisible!!
THIS IS AN EX-ABILITY!

Yes its true, my walking ability is gone, forgotten, history, lost forever, and a not so distant memory, and I'm a bit pissed off about it actually.

Scratch......

I have a number of pet hates which may seem trivial, but number 1 is having my push rims scratched!!! G-d, I know its so trivial but it drives me nuts every time I scrape past something, I can almost feel my blood pressure rising inside my head as I do it. There are 2 main reasons for this, 1. its a vanity thing, I like my chairs to look at least half decent and 2. fingers can be very sensitive to changes in the surface. Knocked paintwork can be sharp at times you know. So this is why I don't like people putting my chair together for me when I get out the car. Although I try to accept graciously they nearly always get one wheel, stick it in the frame and then lie the wheel, rim down on the floor while they try to stick the other wheel in. I'm desperate to shout DON'T DO THAT!!!!! because it drives me crazy to put it mildly, after all I would never ever do this, as I can literally see the paint being scratched to hell before my very eyes. Mostly I don't say anything, but I have to confess that my husband still does this and you'd think by now had have got the hang of not doing it, but he still does.......calm,.......calm,........calm...........

Another day

Ive been sitting here today, fiddling around with the computer, catching up on jobs, paying bills, that sort of thing, nothing amazing, just an ordinary kind of day. the kind of days that I long for and are all too rare in my life. And you know something, today I just cannot, cannot reconcile myself to a life of wheelchairs, catheters, bowel management, pain, and medication. I want something different, I want to be ordinary, normal, unexciting, mundane. I would sell my soul to the devil for a few days of normality, a few days to go cycling with my son, to walk my dogs, to paddle in the river, to run up a hill until I have stitch in my side, yes I would trade with the devil himself. The way I feel at the moment, I could roll myself into the path of an oncoming Eddie Stobbart lorry on the A69 and be done with it, my children keep me going. Don't worry I'm not suicidal, and I'm not depressed, I'm just suffering from a large dose of realism and injustice. Oh and I forgot, bitter and twisted too. I'm tired of every bit of my life being such a bloody struggle. It really does seem like that at the moment. While I'm having a rant Id also like to say that if someone points out there are people worse off than me, I'm afraid that it doesn't make me feel one jot better. It doesn't stop me feeling crap or tired or worn out or plain fed up knowing that there is great suffering in the world, so please don't even bother. But as they say, tomorrow is another day, thank God.

My Son

My older son is 3 and a half, more like 33 and a half to be honest. For a start he likes to push me everywhere, which can be a bit alarming for me, and he is also very interested in wheelchairs. Most kids stare at me a lot, but I'm pleased to say he doesn't stare at other wheelchair users, but he does like to comment loudly on the wheelchair they are using. He isn't too bothered by electric chairs, although he likes to compare wheel sizes, and he already has a type of wheelchair envy. He can tell if a chair is like mine, and I think he can pretty much tell if something is an NHS monstrosity or a high spec made to measure job. He has been known to go and chat to complete strangers about their 'wheels' but is totally uninterested in the disability. His other quirk is looking for the little wheelchair disabled sign which he then tells me that's you ma!! At the age of 3 hes quite happy to fling the bathroom door open and come in as I'm dealing with, er... certain matters. Whats that is his favourite question. So of course I have the issue as to how honest and how detailed I am with him. Pretty much I try to keep answers honest and straightforward, however his openness sometimes makes me speechless. whats that smell ma?.....(uti)....How to make me feel good about myself huh?!!!!

Tagging

Ive been tagged by 'Seahorse'. This means that she has mentioned me in her blog in the course of a game whereby we list 8 things about ourselves, and then 'tag' another 8 bloggers. Well, I'm pretty game for most things so purely for your and my entertainment, here are the rules followed by the 8 things....

Let others know who tagged you
Players start with 8 random facts about themselves
Those who are tagged should post these rules and their 8 random facts
Players should tag 8 other people and tell them they've been tagged.

1. I can speak Dutch. I studied it for 5 years while I was at university. Apart from introducing myself Ive never been able to use it much as Dutch people wont let you speak to them long enough without going into English.
2. I'm double jointed which has its pros and cons I can tell you.
3. My worst job ever was working for KFC as a student. I lasted one night and never went back.
4. My husband proposed to me and pulled out a ring at a Paul McCartney concert. Paul was singing Michelle Ma Belle at the time.
5. I used to organise organ retrievals and transplants for the NHS.
6. I wanted to be Prime Minister when I was a child.
7. I played hockey and did shot put at county level but was too lazy to take it further.
8. My biggest ambition at the moment is to learn to fly.

Drunk in Charge

Well I'm sitting here having drunk a whole bottle of red wine tonight and Im feeling perhaps just a bit tipsy. Actually I confess that my fingers are slipping off the keys as I write so the spellchecker has a good job to do and I guess you could say I'm ever so slightly drunk in charge of a wheelchair. How I will get to bed is any ones guess but I'm not a great drinker if I'm honest with you. There's no great reason for this, its more to do with the fact that I'm always driving when we go anywhere so I'm out of practice. But let me tell you now, one of the best ways to cheer me up from a bit of gloom is to pour alcohol down my throat, Oh yes I'm a very happy drunk, in fact I'm downright cheerful and even rather giggly. I like the feeling it gives me and I don't tend to have adverse reactions as a rule. And I might add that one of life's advantages these days is that I can drink huge amounts without ever having to run off to the loo as of course I make my own arrangements where that is concerned. Another nice effect of alcohol is that I find its an effective pin reliever and muscle relaxant. Alcohol is definitely my drug of choice, so next time you see me, buy me a drink.... or 4!

RSVP

Do I ever reply to comments? I was asked. The answer is a resounding NO. And now I'm feeling horribly guilty, in fact I ought to go off and slap myself hard as a punishment. Thing is, whenever YOU leave a comment I always think Oooo how nice..... and then I start to think of a nice reply. Time flies by and having the memory of a goldfish doesn't help either, and therefore I never quite get round to it. So accept my humblest apologies. Tell you what... I will try really hard to leave a reply and if you would specifically like one, tell me, don't ask me, just say Oy you reply to this..... and I will. Meanwhile I will try to reply to things you all leave for me. Is is a deal?

Latrigg

The good people of the Lake District are currently getting very worked up over a wheelchair path being built up the side of Latrigg. If you don't know, Latrigg is one of the mountains near Keswick and overlooking Derwentwater, the views so I'm told are spectacular. The principle of a wheelchair path is a good one, but I'm unsure on the practicalities to be honest. If its being put there so disabled people and in particular wheelchair users can go up it then I'm not convinced its going to be any easier than it already is. We are still talking pretty stiff gradients, and while I'm considered by most to be fairly fit, I'm pretty sure I couldn't get myself up without assistance, and probably quite a lot at that. This means that some poor sod, most likely the long suffering husband would have to push me all the way up. And what about coming down, have Health and Safety even thought about this? Let me tell you that going just moderately downhill in rain or drizzle, or any kind of wet conditions is miserable and certainly makes me feel unsafe, so I'm sure Id have a great time trusting someone not to let go of me all the way down the side of a mountain. ' hang on a sec' as my assistant lets out a giant sneeze..... Whoops......AARRGGHHHH.....! and I fly down the side of a mountain never to be heard of again. So call me an old cynic but it sounds like someone thought this was a great idea without really thinking about how it would really work. "I know, lets stick in a wheelchair accessible path somewhere, that will make the Lake District nice and inclusive" said someone at Cumbria County Council when writing their Disability Equality Scheme. I think you can guess by my reaction that I wont be rushing to try it out. I prefer flat. Follow the link to read the wonderfully outrageous and Id even say slightly bigoted views of some of Cumbrias finest as quoted in the Cumberland News.

http://www.cumberland-news.co.uk/news/viewarticle.aspx?id=519919

Now if you were to suggest a funiculaire..... now there's an idea!

Support

Northumberland Care trust in their wisdom and desire to save as much money as possible only now fund critical care needs. I'm told on good authority that shopping, and visits to the dentist and doctors do not count as critical care. So we have taken matters into our own hands and i now have a support worker. I share her with quite a few other people who do not require critical care but do need some support with day to day living throughout the week. We all have a certain amount of flexibility which is needed but so far it works quite well. I use her mostly for shopping that I want to do on my own and also for doing anything that may need me to take one of the children with me. It seems that because I'm married it is a given that my husband will just give up his whole life to run around doing everything we need to get done with no help from anyone. I decided I wasn't going to stand for it any more(!!!!!!!!!!!!!!!) so we have organised our own system of help. I think it works well and perhaps it could for others as well.

Infamy, In for me.......

.....they've all got it in for me! Oh yes Ive always wanted to use that line somewhere!!! Anyway I'm famous, yes I am.....did you know? OK maybe not famous, a celebrity maybe......not quite up there on the A list.....just a little bit well known then.....? OK maybe not. Anyways I now find myself writing a column for a magazine called Able. Here's a hyper link to take a look,

http://www.ablemagazine.co.uk/Pages/About%20Us.htm

But alas I'm not available online so you will just have to go out and buy a copy!

Out on Licence

Last week we pottered off to the Metro Centre for a few hours. Shopping is hardly my favourite thing, infact I view any opportunity to spend money with distain as I live my life according to needs rather than wants. Puritanism was beaten into me at an early age I might add. Not so my husband, who having been given some M & S vouchers months ago had an overwhelming desire to spend them and some more. So I could be found rolling around the mens dept shouting out suggestions, while trying to track him round the mountains of clothes. Believe me I mean mountains, well from my point of view they were. Finally after some deliberation he decided on shoes, good idea I said and thats when he realised hed left the vouchers in the car. Dont worry I will sit here holding the only pair of size 10s while you go and get them I volunteered. So there I sat, gently rolling myself from side to side and practicing one handed manouvres in order to keep Isak asleep , and also clutching these shoes. A lady went past, and then stopped and asked me if I was ok, did I need any help? I explianed I was waiting for my husband and her reply was oh of course you wouldnt be out on your own...... and off she went. So Ive been pondering that for a few days now. I should have come back with a wonderful witty Noel Cowardism quip, but I never do, I just sit and smile graciously. I have to say Im pretty surprised by that remark and dont really know what to make of it, I mean this person was only about my age, not in her 70s which made it all the more astonishing. Out, Out? Out of where exactly? Really Im at a loss for words. Good job I get let out from time to time isnt it?

Pavlov

I haven't quite got over how my brain is wired up to expect certain things. Take yesterday for instance. I foolishly managed to slam the car door on my toes. Strangely enough my first thoughts were why wont the door shut? and only when I looked down did I start shouting OUCH rather loudly. I guess it took me about 30 seconds to realise I was in fact shouting Ouch for no particular reason as I hadn't even realised my foot was there until I saw it, so it wasnt like I was getting any pain. I started to laugh as odd as I am I see humour in a wide range of circumstances. I was having a reflex action in that I was expecting it to hurt!!! Pavlovian might be a good description. It has also dawned on me that I do this quite a lot. Whenever I knock a bit of me that should hurt I always shout loudly regardless of pain. So I wonder if I will ever get round to not doing it. Might take at least 30 years to change a habit of a life time.

And my toes? They have survived looking none the worse for wear fortunately.

Ask Me, Not Others

When you have a disability people don't like to be direct with you. I'm not sure if its the same with every kind of disability but its true of mine. Because we are all still so very British in attitude, people don't like to ask me why I'm in a chair, so they rarely do even though I'm sure that they are interested. The other extreme being they are direct to the point of rudeness. Although I don't really care for either approach, the worst thing is when, instead of talking to me, my husband gets asked instead. This happened yesterday as we were chatting with a few people we hadn't met before. You know how it goes, where do you live, where did you live, do you work, etc, we all get the measure of each other. I've also just noticed that I hardly ever get asked the work question anymore. But I digress. As it was assumed I was out of earshot, I heard the lady in question asking my husband about me. Now he hates being asked this for many reasons, he never knows what to say, doesn't like talking for me, doesn't know what I want people to know and really hes rather private as a person, and doesn't like nosey questions. He doesn't thank people for personal intrusions as he sees it. So I spin round and take over the conversations with all the gory details, by which point she doesn't know what to say! Times like this I wish I had the nerve to use a bizarre and frankly unbelievable story just for devilment, but Ive never quite been able to bring myself to do it. Well the moral of this is, its fine to ask me really, but don't ask others to speak for me OK?

The Past Life

Following on from that, I'm starting to panic about the proposed trip. The thing is we shall be there for Rosh Hashanah which if you weren't sure is Jewish New Year. Its a big deal, and my father in law is thrilled we are going, but its also a time for inviting everyone over for tea in the afternoon, socialising and generally catching up with people. We left 3 years ago, and now I'm rolling back, so the thing is, I'm going to end up seeing loads of people who I knew well at that time, but who haven't seen me or the chair, or even really know about it either. So............ thinking about it is making my hair prickle because on the one hand Id really like to see everyone again because they were all good and kind individuals, BUT................ well the but is a big one, I know I'm going to be stared at horribly, asked over and over about what happened to me, and just made to feel really really uncomfortable. I will be without doubt, a source of gossip for weeks. I do want to go though as I want to smile and chat and catch up on old times and do the things you normally do, but its not easy. I have a while to think about it though.

Where to stay?

I'm a woman on a mission, although frankly its looking doomed! The story is this, we are off to Bristol w/b 12th September for 4 days to see family/friends and I'm looking for somewhere to stay. What we need is wheelchair accessible, self catering, and family orientated. How difficult does that sound? Impossible is the answer. I have yet to find anywhere that comes up with that criteria, as wheelchair accessible is a real rarity. Ive perused loads of websites offering accessible accommodation, trouble is accessible seems to mean that you can walk unassisted up a flight of stairs. I'm not keen on unknown stairs as to be honest they tend to be hellish, an accident waiting to happen I should think. I don't want to stay in a hotel as I want the freedom offered by doing your own thing which you really need with 2 small children. So the best thing I can come up with is a Youth Hostel.

You wouldn't think it would be that difficult but it is. You can have a disabled room for a couple but not a family as obviously crips never have kids do they? Makes me just a bit cross as it means we would really have to have 2 rooms. So I'm having to compromise with access. I don't know if I will be able to actually shower while I'm there, but hey lets not go there for now hmm? Good job I don't have to worry too much about loos these days isn't it?!

Pain, pain, go away.....

For the last 2 days Ive had bad pain. Its a burning sensation around my back and tops of my legs, groin spasms and it feels 'cold' as well. Very very uncomfortable and isn't really aiding restful sleep either. I cant even remember when I had a pain free day, I just don't have them, at all, ever. It just a question of if its a good pain day or a bad pain day. Whatever, everyday is a painful day, some just more than others.

Disabled for a Day?

I was at a conference this week and we were discussing how to engage with disabled people. Someone came up with the idea 'disabled for a day'. Hmmm is this a good idea? I thought. Initially it sounds useful, but when you think about it a bit more, I really don't see what can be gained. Actually I fear it might even be somewhat patronising. I mean thinking about it for a minute, there is a lot more to being disabled than sitting in a wheelchair. Oh yes, thats right, its not all about access and being unable to walk, in fact in my opinion, that's the least of a lot of our worries.

So assuming YOU are the disabled for a day person, what are you going to experience? Well lets start with bodily functions...

• Will your bladder and bowels stop working for the day?
• Will you get the hang of catheterising yourself?
• Will you find you have wet yourself half way around Morrisons?
• Will it take you what seems like hours just to get up and dressed in the morning, and will you be racked by pain to the point of making you speechless?
• Will you endure stares of well meaning people or the embarrassment of dropping the entire contents of your wallet all over a shop floor and be unable to pick it up?
• Will you fall out of your chair and have to wait for someone to pick you up, or get stuck on a dropped kerb that's too high?
• Will you be able to get yourself up all those slopes you never noticed when you were walking?
• Will everyone talk over your head to your friends all the time?
• Will you curse yourself a thousand times for your own stupidity and inadequacy, and will you wish you had your time over again?
• Will you rant at all those people who park with a blue badge that isn't theirs or those who just park and don't care so you find you either cant get in or out of your car?
• Will you end up always complaning because the access just isnt as you thought and will you sit outside the bank and tap on the window because despite their profits they cant be arsed to put in a ramp?
• Will you sit at home at night utterly exhausted from the physical effort of everything?
• Will you think you are missing out on so many things with your children?
• Will you curl up and cry big tears of sadness and frustration because the pain you had this morning is unbearable and you cant take any more?
• Will you spend hours unable to sleep because of painful spasms that torment your nights?
• Will you wish you could not be disabled for just one day more?

Will you really be disabled for a day?

I think not.

Slap on the Back

I'm very hard on myself. Too hard most of the time, I set myself superhuman goals in everything I do then beat myself up mentally and spiritually if I fall even slightly short of my expectations. It doesn't make for an easy life I must say. However today I was at a meeting and had some of my achievements pointed out to me by a colleague. Over the past year I have been involved to some degree or other with a profit making community transport scheme across the district, a support worker scheme, hire a handy man scheme, a new dial a ride with the support of Waitrose, rolling out of equality and diversity training across the county, and coming up in the coming months; a new service for supporting disabled parents across the north and more work with OneNorthEast. So when you look at it like that I have been quite busy, its just that I'm never satisfied, and I suppose I should sometimes stand back and realise that I have got quite a lot done by mosrt peoples standards.

Anger

I have real anger issues at the moment and although it sounds stupid I don't really know why. I know people say well you have a right to be angry, maybe but for how long. How long should you be angry at life for? Should I have counselling? Ive never really found talking non stop about life helps, it just reminds me of what I feel should be, and what the reality is. Anyway, I don't have it most of the time, in fact I'm a pretty calm sort of person usually and perhaps that's the problem. Just recently my pointy finger has been out pointing hard and jabbing the air, I feel cross, in fact I'm bloody seething. I want to bang the table hard with my fist and shout to the words Listen. To. Me. but what am I saying, anything at all? I dont think I have anything of value to add anywhere much right now, and having just said that Ive hit the nail firmly on the head. Its all about value, I dont have any and I dont feel I can get it back any time soon.