How do I look?

Hmmm not good I imagine. Im not that sure about the new me body image. Mentally Im still me, and Im ok with mirrors and the like, but photos?!! AARRGH who is this person? My brain goes into complete panic mode. A bit like Scooby Doo goes when he is confronted with the monster? You know when Shaggy shouts 'Yikes Scooby!!!' Trouble is, Im both Scooby and the monster. My brain just does not expect to see me in a wheelchair yet, it hasnt got round to thinking how this all is. I know I mentioned my dreams in a past posting, that was my subconscious mind, my conscious one is having more trouble with it. Is this really how its going to be from now on? I guess so.

What not to wear.

How Id love to go on 'What not to wear'!! Have they ever featured a wheelchair user? Anyway my view of clothes has seriously changed. On the one hand Im suddenly a lot more aware of how I look. Its bad enough being in a wheelchair without looking as though you dont care about your appearance or have any self esteem at all. Trouble is, wheelchairs are somewhat limiting as to what you can comfortably wear. For starters I have had to ditch most of my coats, because the arms are too long. I only have short arms to begin with, and its even more difficult now. One of the most frustrating things is trying to get yourself fom A to B and finding that your cuffs catch in your push rims, or are being rubbed away on your tyres. So its best to look for things with shorter sleves or 3/4 sleeves. Then there is the issue of skirts. I have a big problem with wearing them these days as I just dont feel that good in them. My gut reaction is to hide my legs away as much as possible, lets just pretend they are invisible eh? I know I do. So wearing a skirt makes me feel very self conscious as men seem to suddenly stare. 'Watch out female in a wheelchair alert'.... hmmm dont like it one bit. There is also the practical aspect that if you wear a skirt its impossible to jam things between your legs to carry them. Bags are a bit of a sod as well. I have one that goes on the back of my chair, its alright though you are doing everything with your hands literally behind your back and in the dark. Takes practice but its ok. Its quite difficult to buy clothes and try them on. Most shops dont have wheelchair accessible changing rooms, so I mostly go to M & S in the knowledge I can bring it back if it doesnt fit. Finally there is the issue of gloves. Now I could go on and on about gloves because I hate wearing them with a vengeance. If anything makes me feel like a cripple its gloves. I really really resisted wearing them for as long as I could. Firstly I prefer to touch my chair and really feel I have control over it. But by the end of December I realised that as my hands look at least 10 years older than the rest of me I couldnt continue to give them a bashing and hope to get away with it. So I bought 2 pairs of gloves, one a plain pair of green leather which are ok, but are thin and I can feel the heat on tmy thumbs whan I go down hill. Secondly I have pair of gell filled half finger cycling gloves. These are a lot more effective so I will have to go down this route I guess. Hopefully though we will get some nice weather and I can leave them off for a while.

An Example of Excellence

As ever I like to be as free with my praise as I am damning in my criticism. Last w/e we visited Hexham Old Gaol, which has recently been upgraded at great cost. The disabled access is really first rate and in my opinion cannot be bettered. Inside there is a glass lift which takes you up and down, and also provides a commentary. Each room has ramp access but is done in such a subtle way that you dont actually realise you are on a ramp. Very clever. Gold Star award goes to Tynedale council.

Weighty Issues

I have lost weight, infact Ive lost a lot of weight over the last few months, only the trouble is no one can tell!! Irritating really, that Im the thinnest Ive been since God knows when and who notices?!! Bah humbug.... The main problems in showing off my wonderful figure ( Ha Ha) is that first of all Im getting a good set of shoulders which sort of take your attention. While its ok for men to have biceps that bulge, its not so usual with women. Im not saying I look like a body builder, I just have recently realised that Im pushing myself with some gusto up hills that a few months ago I found hard work. Secondly stomach muscles tend to be less tight infact they can sag quite a bit. I dont think Ive suffered too much here as I was never thin to start with.....men suffer a lot more so Im told. And of course I have great selection of baggy looking trousers. They either fall off me or just look very loose generally. This is because my legs are a law of diminishing returns at the moment... I noticed I can now put my hand around my calf muscles and my fingers touch. Although for some reason the right leg is going quicker than the left...I did say the right was worse. Anyway Im digressing here.. Just remember next time you see me you must say 'My how you've lost weight!!' and Ill smile that knowing smile and think ' Yep amazing what a serious problem can do for your figure!' Anyway this leads me swiftly on to.....clothes for the cripple!

Name and Shame 2

Yep its time for the weekly name and shame posting... its sad I that I even need to do it frankly in this day and age, but here we go. This weeks turkeys go to a couple of businesses in Hexham. Once again I can say the majority have made every effort to comply with legislation and provide wheelchair access, unfortunatly these 2 have not. So lets blow a big raspberry for Clarks shoes and Poundstretcher. Both companies are rich enough and big enough to know better, so they should hang their heads in shme. Will they care tough? I think not. By the way if any of these companies legal departments would like to contact me, I will be only too willing to go over the finer points of the DDA with them. Publish and be damned!!!

Sport

I have been thinking that I would like to do some sport. Id like to feel that Im alive again, get the heart pumping and get a bit breathless. The opportunities are a bit limited, thats the trouble. There is a wheelchair exercise class, but truly and honestly I cant see myself doing it. I hated aerobics when I could walk, so its likely nothing has changed there.

So Ive made a few enquiries, and have found that in a couple of months I can take advantage of clay pigeon shooting, and trout fishing... with wheelchairs! No I dont have a clue about how its done either. And Ive also enquired about horse riding. Now this is something I used to do many many moons ago, in another lifetime. I had been thinking of taking it up again for a few years now, so Im making enquiries with Riding for the Disabled. My husband had a blue fit when I mentioned it to him, 'you cant do that' he cried!! Well why I wonder, Im not going to fall apart am I? So Im waiting to see what happens here. I realised you see, that the countryside is suddenly becoming off limits to me. I dont want to sit in a car looking at the sea, or a field for another 40 years, so some gentle riding will get me out into the country. Looks like I could be 'hunting, shooting and fishing' sooner than I thought.

So heres another photo of me taken with a phone camera! Im grimacing because we had just arrived at Newcastle airport at 8.30 in the morning, and the wind was just arctic. My son is still in his PJs and really Im thinking.... 'get me in the bloody car!!'

Links

Im slowly adding some links at the side which I hope you might want to take a look at. They are all close to my heart in one way or another, Im choosing to link to sites I really want to, and not ones that have no relevance.

Wait for that wisest of all counselors, Time

I have a counseller.... Or rather I did. My Gp thought it would be a good idea for me to be counselled on coming to terms with my disability. At the time I just nodded wildly as you do and thought 'thats another box ticked.' But on reflection Im not the counselling type. Im the get on and do it type, not the sit around and talk sort. So.... I took a few breathes and went to see this lady a couple of times. Although my initial thought was 'no this isnt for me', I decided to give it a chance so I think I saw her 3 times before deciding enough is enough. I realised that I came out angrier than when I went in. Sure Im angry, why not, why shouldnt I be? Its not a crime, and talking about how I feel just doesnt make me one jot better. And anyway thats the point isnt it? I dont feel very much at all these days, but how can she understand? Her favourite reply was. 'I dont understand, can you explain more?' Well to my mind 'NO I CANT EXPLAIN ANY MORE AND HOW COULD SHE POSSIBLY UNDERSTAND AN EXPERIENCE SHE HAS NEVER GONE THROUGH!!!!!!?'

See, its making me cross even writing about it!! But you know we live in a society where counselling is expected to right every ill. Think after almost every TV programme these days you get ' if you have been affected by any of the issues covered in this programme, please call our helpline where trained counsellers are ready to take your call'. Its not like that is it? We are all the sum of our parts, and our lives experience make us who we are today and tomorrow. I often look back to my grandfathers and great uncles wartime experiences, here is a summary of some of the things they did;

Harry. Naval officer, sunk 2x served at Dunkirk evacuations and on D day. Ran up and down the beach rescuing as many men as possible before removing his landing craft from the beach.

Bert. Naval officer, served entire war in Submarines.

John. Military Police, served in Far East and Burma campaign.

Rowland. Reserved occupation, worked 100 hours a week for 6 years, volunteer firewatcher, he dug victims out of their houses after the Coventry Blitz.

Raignalt. Tank commander. Served at Dunkirk, and with Montys 8th army. Taken prisoner by Italians, escaped from Italian POW camp, recaptured by Germans, spent rest of war in camp near Dresden.

So what am I trying to say here? Well each of these men experienced the horror of war at first hand, and yet when the time came, they returned home and picked up where their lives left off. None of them were offered or recieved any kind of counselling, and most rarely talked about their experiences. I suspect that the more you talk the worse things can become, and for many people including myself it is always better to look forward and move on. Dont stop and look over your shoulder becasue we cannot change what has already gone, but we can hopefully change the future.

Side Effects

I take every day a small but select number of different medications for this, that and the other. Most seem to work ok with little problem. However last week I started on another pain killing drug called Nabumentone, its non steroidal so as far as my consultant thought, safe as houses. So 3 hours after taking it I go down with what I thought was a terrific stomach bug. Bloody Hell was I ill for about 26 hours or so!! Believe me its no fun at all when you have very limited mobility... its probably the same as being an old person in a nursing home. Certainly made me realise how dependent at times Im going to be on other people from now on. Anyway I digress.... So I didnt take it for a few days as I was ill, so 2 days ago I took it again, not realising it was the culprit. Hey presto, there I was shariing my dinner with the entire family!! Yep I still fell pretty URGH.. but at least I know the cause now.

Feeling the Pressure

Bugger, bugger, bugger, bugger. I have pressure sores. In fact I have about 4 or 5 small ones on my left leg. This is really crap as they are practically number 1 enemy. In this instance they are lurking behind my knee and above my knee. For the squeamish, look away now.......! Actually the pictures dont do justice to them. As they are at the back of my knee it looks like they are going to be a complete sod to get rid of, its a nice warm place ideal for yummy bacteria!!!

They were caused by my left leg brace, which obviously isnt doing the job. I have another one on order, but I suspect it will be another week. So I will have to leave it off, which means I wont be able to stand up at all for a week, without keeling over. My left leg is the better one anyway so its typical thats the problematic one!

A Level Playing Field

Sand, gravel, grass, mud, cobbles, concrete, rocky, tarmac, carpet.... legs are all purpose terrain vehicles. With a little tlc they will take you over pretty much any terrain within reason and a little care. Not so with wheels, their versatility is somewhat limited.

Sand is more or less the worst possible scenario, I cannot imagine when I will ever sit on a beach again, and although it doesnt appear too often in everyday life it can appear when you least expect it. Take last week when visiting a national trust property I parked in the disabled bay, 'jumped' out the car, got myself sorted, only to suddenly realise that my wheels were sinking into sand. Mmmmmm yep, thats right someone had decided to use compacted sand for a disabled parking bay. Good idea that one, a gold star in awareness!!!! Fortunatly I escaped before being engulfed in the quicksand of time!

Gravel is much loved by hotels, country houses, and corporations. Its like well, pushing through gravel!! Hard work. thicker it is, the worse it gets! Not great, and in some circumstances Im sure you could find yourself stuck.

Grass and mud, well mud is the most messy thing ever as wheelchairs dont have mud guards so it flies everywhere, and you end up filthy, grass can be problematic. At this time of year its soft and uneven. bumpy and lumpy. I have it on good authority that once hot weather arrives it improves which I hope is true. Northumberland has a huge number of agricultural shows which Im dying to attend all held in fields. Could be hard work on the shoulders, but hopefully Im up to the challenge.

Cobbles are a real bugger for wheelchairs. More often than not there are enormous holes around each cobble, and its a real sod trying to negotiate coz if you get stuck theres a good chance you'll end up coming to a sudden halt and being flung head first across the floor. It almost did happen to me!! Only luck and good grace stopped me ending up SPLAT on the floor!! The other thing with cobbles is that they are so uneven that I can literally feel every cobble shooting up my spine as I cross them. I know you are thinking..., Cobbles? Ah, believe me they are everywhere, you just dont notice them.

How to leave a comment.

Several people have asked me how the comments works here. Ok follow these instructions are you too can be a valued part of my blog.

1. Click on the word 'comments' below the posting you want to comment on. Not the envelope, thats for something else.

2. A pop up box appears where you write your comment.

3. You can either tick 'anonymous' box, or 'other'.

4. Obviously anonymous is as it says.

5. In other, you can put your name if you want.

6. Then click on the blue publish button.

There, done and sucessful!

Well done you can be pleased with yourself, and let me thank you for adding to my blog.

How do you dream?

I was recently asked this question by a lady I know who is blind. She wondered how I saw myself in my dreams. I hadnt really considered this before but on reflection most of the time Im the observer of my dreams, so I rarely see myself taking part in them. However last night I had one of those rare ones where Im watching me. Usually if this is the case Im just sitting down somewhere, but last night I was being active. It started with me being by a beach, and thinking that the water looked good. trouble is there were steps down to the beach, so I dragged myself down the steps and crawled along the sand to the sea where I sat and dangled my legs in the water. On the way back I did the same thing only the steps went on forever this time... eventually I said ' Ive had enough of this', got up and walked the rest.

So what do you think? On the one hand my I think my brain is coming to terms with me as I am now, but on the other it is still continually frustrated at the difficulties in getting around. And of course rest of your life is forever.

Incidentally if you want weird, my blind friend dreams in pictures!!! Seems her brain uses stored images to make her dreams so she actully 'sees' them. After being blind for 20 years I find this truly amazing, and even more curious is the workings of our mind.

Anyway this leads me onto our next subject which Ive been thinking about which is road surfaces!..............

The Detritus of Disabled Living

"Bloody hell, the house looks like a nursing home!" was the comment from my husband. Hmmmm.. he may be right there. Over the last few months I have had a hoard of occupational therapists traipsing round the house bringing me handy gadgets which are supposed to make my life easier.

They cover every room in the house...the bedroom, things to get out of bed with and to help me get dressed. (Current time taken, 1 hour..).The bathroom, all sorts of things Im NOT going to share wth you!! The living room... picker uppers and of course the kitchen which is a magnet for every kind of invention. The thing is, these items my be useful, but they either come in brown or beige, which may blend into my 94 year old grandmothers house, but look less than eyecatching in mine. Surely there we have a niche market for disability living aids in a bright cheerful colour for the younger cripple!!!

For me the most useful things have been the getting out of bed stuff, the rest has been of limited use. To be honest I tend to forget its there most of the time, and spend half an hour struggling to get a job done!! Im not sure if anyone really uses the items they are given, perhaps its only me, but I sort of feel as if Id be better going off to 'Lakeland' to buy my own stuff.

Anyone know what this photo is of? No prizes but a special mention in this blog will go to the most original suggestion.

My Husband

My husband is indeed a wonderful man, and I want to take this opportunity to thanks him for his support, understanding, care and commitment over the last few months in particular. Without him I doubt I would be in the position Im in now. I believe it is a testament to a strong relationship that when times are difficult as long as you pull together you can overcome any problem. Unfortunatly it is all too common that we as individuals tend to pull apart. I want to thank him for putting up with me, for soothing my anger and frustration, mopping up tears and offering cuddles. I could not have asked for more, and I know he would expect no less of himself. He has certainly become the mensch he aspired to be.

Idle gossip

Ive realised I have become the subject of much gossip and speculation amongst members of my family. Im much bemused by this never having been so interesting in my life before. Yesterday a cousin rang me to say she'd heard something from her aunt, who'd heard it from her cousin, who I suspect had also heard it from a cousin. Its mostly a case a chinese whispers which I find irritiationg. All I can say is if you are going to gossip maybe check your facts first. Let me point out that I dont have months to live, Im fine and as Ive said before am looking forward to another 50 years!!

Well done Chancellor!

I have no problem in nailing my political colours to the post as it were, anyone who has known me for a while wont be shocked to know Im an active member of the Labour party. I know the government comes in for a lot of criticism, and some of it rightly so, but the Labour party is the only political party that has consistently tried to improve the lives of the underclass of society. While todays newspapers grumbled about inheritance tax, and car tax, it went unnoticed and unreported that there is going to be the introduction of free national bus travel off peak for pensioners and the disabled from April 2008. I realise people moan that its 2008 but it has to be planned and budgeted for. Anyway I really hope this will improve the lives of many as thousands of disabled people live in poverty and isolation. Many are trapped in their own homes for a variety of reasons. Its bad enough being disabled, but being poor and disabled is the worst thing of all. We all know its not enough, but it may be more constructive to take the carrot to our politicians than always use the stick.

Driving

Here is a photo of my blue badge. As you can see I look less than chuffed but thats probably not surprising. Anyway I now have free parking for life which over the next 40 years could rack up a considerable saving!! I love driving and if I couldnt drive anymore Id probably wheel myself under a bus and be done with it all! We have a Mitsubishi gas guzzling Shogun which is fabulous but also as we live in the middle of nowhere is fairly justifiable. It takes me, my husband, son 2 dogs, wheelchair and other stuff with ease, and with a V6 engine is really easy for me to drive. I just point it in the direction I want to go, set the cruise and steer. I have a few modifications which make it easier for me. One being a suicide knob. Im not sure why they are called this, but anyway it attaches to your steering wheel and allows you to do everything with one hand, especially turn the wheel quickly. So simple so effective, why doesnt everyone have one?

The other thing I have is a special seat belt called a CG lock. It turns your own seatbelt into something like a an airplane seat, and holds you very firmly to your seat. I find this very effective as I have quite a tendency to slowly tip forward as Im driving until Im hunched over the wheel. This encourages better posture all round and removes this problem considerably.

A Question of Courage

Courage is the ability to confront fear in the face of pain, danger, uncertainty or intimidation. As a virtue, courage is covered extensively in Aristotle's Nichomanchean Ethics, its vice of deficiency being cowardice, and its vice of excess being recklessness.
The precise view of what constitutes courage not only varies among cultures, but among individuals. For instance, some define courage as lacking fear in a situation that would normally generate it. Others, in contrast, hold that courage requires one to have fear and then overcome it.
There are also more subtle distinctions in the definition of courage. For example, some distinguish between courage and foolhardiness in that a courageous person overcomes a justifiable fear for an even more noble purpose. If the fear is not justifiable or the purpose not noble, then the courage is either false, or foolhardy.

However you look at it I am not courageous. Several people have expressed admiration at my courage to my husband. It embarrasses me acutely. No Im not brave Im just getting on with things. I have very little choice, so courage really doesnt come into it. Im just an ordinary person with an ordinary life making the best of what I have.

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do." Eleanor Roosevelt.

My chair 2

Ok, Ive tried sticking a photo with the earlier entry but for some reason it just wont go. Anyway here is a picture of my wonderful chair. The spoke guards are a design called purple turtle. They turn a lot of heads, and the frnt casters have little flashing lights in them. If Im going to be a cripple at least do it with some style in my opinion! As you can tell I can wax lyrical about it all day, but its given me my life back.

In the footsteps of FDR.

Franklin Roosevelt was always one of my heroes from history. Here is a man who suffered paralysis at the age of 39 and then went on the be US president for an unprecedented 3 times, at one of the pivotal times in history. FDR not only overcame his own disability, he changed the lives of thousands for the better. All of us have the FDR spirit inside us, only quite often it never gets the chance to come out, being hidden away in our normal lives.

FDR also developed a technique of standing and walking, 'swing from the hips, swing from the hips', and by using leg braces he gave a good impression of being able to walk even when he couldnt. Its something Im working on at the moment with the use of braces. I have a wonderful selection of them which litter our house constantly. They go from the tip of my toes to my hips. Very feminine... NOT! Its ok, you cant see them too much under trousers to be honest. The ankle bits are the best as the work very well. Given my ankles have all the muscle tone of 3 day old dead trouts they are pretty good at keeping my feet straight. The leg ones are more problematic. One size does not fit all in this case so Im having bespoke ones made no less. This should be very interesting, how many of us can say we have had such bizarre experience? Heres a picture showing a couple. No wonder my husband is so irritated at my untidiness.

“Once you’ve spent two years trying to wiggle one toe, everything is in proportion.”—Franklin D. Roosevelt, 1945

Parking

Its a pet subject of mine and why not? I will come back to it again and again... Why do people steal disabled parking spaces? I know we live in a selfish society, but its not far to walk is it? I like these, you may have seen them before, but they generate hoots of laughter especially amongst disabled people. Let me know if you cant see these images... I think if you click on them you can see them better. Really its ok to laugh. Thinks.... I must get some of these printed off for personal use in supermarket car parks!

Praying for a miracle!

Someone recently said to me ' we are all praying for a miracle'. Its not often Im stuck dumb, but really I was lost for words..... 'Oh right thanks' was my reply. On reflection I should have made a sharp retort, but what can you say to something like that? ' Do you think my life is so awful I need a miracle'? If a tad patronising, then its probably a generational thing, if Im cool about it all, then you certainly can be.

My chair

Id be lying horribly if I said I thought Id ever have a passing interest in wheelchair design, its not the sort of thing most people would ever even think about. But amazingly I now find I peer at everyone I see, assessing it for function, style, colour, oh and tyres!!! Sad isnt it? make mental note to get a life!

The NHS in its wisdom has a 3 tier system for getting a chair,

1. They give you what they have and you make do.

2. You get a better choice, but then you have to maintain it for them.

3. You get a voucher and go off and get what you want.

Hard choice there.... Lets try number 3.

The internet makes all this information gathering so much easier... what would I have done 10 years ago? Soon you realise there are big players in this field its not like just popping out to pick one, its the equivalent of buying a new car. Now who to chose? IMHO the main ones seem to be Quickie, Kuschall, and RGK. I canvassed a lot of opinions, Quickie seems to be the Renault of the wheelchair world. Ubiquitous, people get stuck with them, bits fall off, and nobody likes them. Kutschall I would compare to Ferarri, top notch, foreign, and bloody expensive, then there is RGK. These are I reckon to be in the BMW class, stylish, sporty and well engineered. So I went for RGK and I think a really excellent choice.

If you saw the tv programme Beyond Boundaries where a group of disabled people schlepped across South America, then RGK made all the chairs for them. Like a sports car, less is more, the less you have the lighter the frame, the more manouvreble and so on... the choice was pretty endless, style, colour accessories, fixed frame, folding frame, camber etc. Eventually I went for a low back which holds the bottom half of me together, and a fixed frame which is lighter and more robust. You can see there is a bit of a bucket seat which helps you balance. There are no moving parts, its the lightest poly alloy frame. Green frame, flashing wheels , purple spoke guards, and slight camber. Chunky tyres. It screams look at me!!! This wasnt my intention as such, but I wanted something fun for my 2 year old. Camber allows for more stability, but less manourvrebility I think, so I only have a slight camber, and am trying not to fall over too much. The only thing I want to change in a few months is the push rims which are not the best ergonomically, so Ill probably change them for rubber coated ones.Easier to push and not so cold.

So you see it wasnt an easy choice, but I think I really made the right one for me certainly, I have no regrets.

Wheelies...

Dont, ok? Dont even think about it unless you were an acrobat in a previous life. believe me I found out the hard way!

Wheelchair Services

Every PCT has the dept of 'wheelchair services' and guess what they sort out wheelchairs! They have a huge variety of chairs, big ones, heavy ones, big ones, heavy ones, oh did I say big ones? Doesnt seem to matter if you are 5'1"... like me,.. or 6'4 you still get the same one, ie something completely unsuitable for your needs. No one at wheelchair disservices has ever had to use a wheelchair so they seem for the most part pretty oblivious to what the requirement of a mobility aid is. Ummmm to make you mobile perhaps? But also more importantly to make you INDEPENDENT.

Ive noticed this most acutely when out shopping... lots of people struggling with heavy old chairs. Ive also heard a lot of anecdotal stories on this one as well. I was talking to my dearest husband about this, he works with a lady with MS who is probably just a bit older than me, anyway he helped fold her chair up and stick it in the car for her, only to find it was so heavy he could hardly lift it. The lady in question has trouble getting out of her house which is not surprising given the weight of her 'mobility aid'!

Leave a comment

Go on, go on, go on..... You can now leave a comment if you want to. It was my fault entirely as I hadnt changed the settings so you could... too technical for me by half!

How are you?

'How are you?'

'Fine' I say 'fine....'

'No but how are you?'

'Fine thanks'

This is the sort of conversation I hate with a passion. Im fine, really I am fine. How much do I have to reassure people that Im ok actually. I dont have a cold, bad stomach or migraine. I dont have a life threatening condition, and please G-d I will live for another 50 years at least. Well thats my intention anyway. What do people expect me to say I wonder?

' Im terrible, I cant walk, my life is over, finished, Im done for , oh woe.......'

Sorry thats just not my style. Having had stoicism beaten into me as a child (metaphorically speaking) there is no way Im going to share my own personal thoughts with anyone who asks. I dont wear my heart on my sleeve and thats all there is to it. And lets be truly honest with ourselves, do we want to hear it if we ask someone and they tell us they are not alright? For the most part, No.

My body!!

Now there's a scary title for a posting..... my body, yes well Ive realised its falling apart. Bit of a bugger really, I could be just a floating head in 10 years!! Anyway where to start? Perhaps this is just too grim but hey Ive started so I ought to finish so lets get on. Well my feet are continuously giving me the wrong signals. Either they think they are plunged into freezing cold water, or seem to be burning up. Neither is true. My toes are looking dodgy and I dont know why. I'll probably have to take them along to my GP to peer at. I suspect that Im getting my toes caught under my foot inside my shoe, but I dont realise it. Otherwise I cant think what the problem is. My bladder wont cooperate half the time which I really hate. Its not seriously embarrasing or anything like that, just ummmm something I have to deal with. Ive also had a pressure sore this week to sort out, little buggers like to get infected as soon as possible. Im finding it more and more difficult to sit up straight as my lower back muscles wont do the job anymore. Its funny that you dont realise how much you dont think about sitting up. I have to work at it quite a lot these days. I pulled a muscle in my side which hurts when I breath in, and my hands look at least 10 years older than the rest of me despite gloves and handcream. Dont I sound just marvellous! Oh well never mind, all part of lifes rich tapestry ....

The Anatomy of Pain

I was listening to a discussion on euthenasia the other day, and speaking was a consultant in pallitive care. He made the statement that no one needs to suffer severe pain in 2006 and that the argument used by many supporters of planned suicide, that someones pain was too great to cope with was totally wrong. Hmmmmmmm, Im sure he has absolutely no personal experience of just what pain can do to you, the theories are all wonderful but the practicalities so much more sobering.

Speaking for myself I have pain 24/7 all day every day, it never goes away, its more a question of how severe it is. How I cope with it if I do. Think of pain, think of a colour. Red quite often is the main colour in your head, red and hot. My pain is white and cold, very cold. Thats how neurological pain differs. You are getting so many different neurological signals bouncing around your body , but they are going to the wrong place giving the wrong instruction. So for me its this cold white intense pain that starts at the base of my spine, runs upward and then comes out through my pelvis. The intensity varies. Sometimes it is so bad I cant speak and have to lie down, and hope it will go away at some point. Its the worst part of my life. The thing with pain is that it comes along and robs you of everything good about yourself. I have no hesitation in saying that it has at times turned me into a real bitch. It takes your humour, your personality, your patience and good grace. For me it is as if someone has taken my very soul. So what can be done? Frankly I have tried so many different medications there isnt much left. Most dont help at all, and a few ease it a bit. My consultant was very honest in that he thought nothing was going to be of great use, Gabapentin is a drug widly used for neurological pain relief, it has proven for me to help the bad times at least. Otherwise looks like I shall be sent off on a pain management course. I have no idea what this involves but I suspect its to do with deep breathing, aromatherapy and positive thinking. Think I do that already!

Name & Shame

Ok, here is the first of many post where I intend to name and shame companies who have made no effort to provide disabled access. This weeks Crap Access Awards go to 'Going Places' And 'Lush' both found in Carlisle. While nearly every other retailer there has modified their entrances these 2 companies just couldnt be bothered could they? Well Shame on both of them, lets be honest with the Disability Discrimination Act in force, this should be totally unacceptable in 2006. Lets see how long it takes them to do something about this parlous situation.

Thanks....

I just want to say Thanks to everyone who knows/knew me and who have avoided me so astutely since my incapacity. Thanks guys.... I know who you are dont forget, its nice to know you cant deal with my predicament.

A travel perspective.

So lets get straight into this blog thing. Last week we went to a family wedding in Bristol. Rather than drive for hours on end we decided to fly. Overall it was a good experience even with the wheelchair, but coming back Newcastle Airport deserves a big fat raspberry for its total lack of thought when it comes to disabled parking... here is the letter of complaint I wrote, Ive included the expletives as well.

"I flew from Newcastle last week and was appalled at the woefully inadequate provisions made for disabled parking at the airport.

The problems started after I dropped my husband off with our bags and 2 year old son at the terminal thinking this would be easier. How wrong I was. Firstly there is a pay on foot system that is designed for men at least 6ft tall. Try getting your money in when you are in a wheelchair and paraplegic, impossible, so I had to ask someone to do it for me. I realised there is a help telephone, but you still have to get out your car to get to it which isnt much help if you cant walk.

After parking the car I waited for the bus to transfer me to the terminal, only to find that even with the front of the bus lowered it is totally inaccessible for wheelchair users as there is 6 inch step where the bus is not level with the kerb. This is because no one has bothered to ensure that the kerbs are built up to meet the bus. It was only through the helpfulness of the driver that I was able to get on and off. He got out and pulled me up onto the bus and the got me off again.

However coming back I was not so fortunate.
Again, I had to tell the driver 'I cant get up there', so he offered to pull me up. Its not as if I had any choice is it? The thing is Im a dead weight these days, I cant just say hang on Ill just hop out while we sort this out. Im really reliant on someone getting it right first time, its totally my life in their hands. So he grabbed the back bar on my chair and pulled me up, but did so really slowly so the front tips forward and my front wheels slide under the bus. Im just hanging there holding on for fucking life I tell you!! Then he lets go and I slam forward just to be caught by a large guy who's stepped forward to help. Thank God all I can say. So Im sat there with my face all squashed up against his chest having a good look at his shirt and the inside of his jacket. Is there no fucking dignity left in my life?!! Its just as well I have a low level spinal cord injury because anyone with a higher level of injury would have just been flat on their face. As it is I have pulled all the muscles in my left arm and wrist which isnt much fun when you use a wheelchair all day.

So how acceptable do you think all this is? Personally I believe that in 2006 it is totally unacceptable to treat anyone like this. I am absolutly furious about the whole thing. I am not a sack of potatoes to be heaved around with total disregard for my well being. It is both humiliating and degrading. There are numerous health and safety issues for both the driver and the passengers. Im sure that the drivers have not had wheelchair handling training. This parlous state of affairs needs to be put right with immediate effect. If you are unable to raise the kerbs, then you should move the disabled parking to the front of the building, or you could provide taxis for wheelchair users. Either way I can assure you this is an accident waiting to happen and had I fallen I would have been compelled to sue the airport for failing to provide facilities as advertised.

I have no intention of letting this matter drop. It seems to me that your failure as an airport to provide access is in direct contravention of the Disability Discrimination Act. Since 1 October 2004 service providers, in this case Newcastle Airport, are required to take reasonable steps to tackle physical features of premises, like steps or narrow doorways, that prevent, or make it unreasonably difficult for, a disabled people to access their services. I cannot see with the current state of affairs you are doing this as I was unable to access the airport without the goodwill of another."

So we shall see what happens here. Thanks Newcastle for leaving a bitter taste over the journey.

Bluebirds and Bollocks

This is me and my son.... as you can see we play a game where he pushes me around and I crash... hilarious for a 2 year old, but could be fatal for me!! Heres what happened on a recent trip to synagogue....

My son was being noisy so I was playing chase around the foyer with him. Somehow he managed to push me back and I flipped over and my head went THWACK on the tiled floor. Fuck, fuck, fuck, is really all I could think... how much did that hurt?!! Seriously, I felt as if my head had just exploded. Thank God no one heard me shout Bollocks as it echoed around. Im sitting there with my bum in the air and bluebirds flying round my head, and my only thought was did anyone see ? So I somersaulted over and then we sat on the floor waiting to be rescued. Dan comes out. Ok? he says, yes we decided to play I said. Who said Pride comes before a fall?

My so called life...

This is the blog of my life from the point of sitting in a wheelchair. Its a real bugger at times I tell you so please dont be offended at my swearing. I do swear a lot, most of the time. I find it helps with the frustration of everyday life when everything takes double the time it should. When you cant get where you need to be, when you find someone has parked in the disabled bay, when you are ignored or patronised, when disabled access is so crap you are stuck sitting outside, when you are practically thrown headfirst out of your chair because that dropped kerb is an inch high. I could go on and on. Dont worry I will. Thats what this blog is for, its my way of counselling the crap out of my life. But I hope I dont come out as one of lifes whingers, Im not. I love my life,I love where I live, I love my family and friends, and best of all I love being just alive. I have so much drive and energy I feel as if I want to go for a 10 mile run. Its so bloody frustrating that my energy doesnt seem to have anywhere to go. Anyway this is a good place to share my thoughts and opinions on the life I now have as opposed to the life I once had.

KBO

KBO stands for Keep Buggering On, and it was a favourite saying of Winston Churchill's. Its also one of mine, especially when I am enduring lifes trials, there isnt much to do then but KBO!!