Not in my lifetime!!!!!

I'm pretty keen on sport, I like most things with the exception of tennis and golf that is. I'm looking forward to the World Cup and have entered our work sweepstakes. My teams to watch are USA, Sweden and of course the hosts, Germany. One of the advantages of being disabled, and there are many I can tell you (irony, irony) is that you can get often free or very cheap tickets to sporting event for yourself and carer. I don't really have a carer, but for this Ill be cared for. Horse racing is one of the events you can get into free, and of course there is football.

Unfortunately we don't have a great deal of choice when it comes to football, for most people here it is Newcastle. Try as I might I cant take to them and so look elsewhere for a more local team. We have a choice of Carlisle, Gretna, or for something a bit more juicy.... The SPL. I have a friend who is a rampant green striped, dyed in the wool Celtic supporter. Yes I know its true, unbelievable in fact but its a good job someone feels the need to do it! Celtic used to be a good team, and I'm talking a long time ago, like 1967 was the last time they won anything major, and sadly with Gordon Strachan in charge its not going to happen anytime soon. Like I said not in my lifetime then or in the future I should think. So who can challenge Celtic, certainly not Rangers who are just a shadow of previous teams, Hearts looked to be doing well but no one knows who's running the club, picking the team or even making the tea anymore. So this household takes a little look at Hibs. And why not, they are to my mind a cracking side with everything to play for. As we have quite few connections with Edinburgh, my husband used to live in Easter road during his student days and I like the strip ( Im a woman!) , we have decided they will be our team from now on. (Liverpool and yes I know sadly Coventry City notwithstanding). But then I've given it all away haven't I? Yes as someone who has followed the Sky Blues misfortunes for many a long year, I will never be able to take to a team with Gordon Strachan in charge. Sorry, did I hear the name 'Roy Keane' echo around the room? Good old Gordon got a real bargain there.....Not! Heres a picture just to remind you of the Celtic Glory days, now what was that about free tickets.........?

Appleby

It was one of those sort of frustrating weeks. I had a meeting to attend in Appleby, a very pretty town not too far from Penrith. The initial meeting point was Tourist Information, easy to find and central. I arrived in good time only to find there was nowhere to park. And I mean no where, or rather I couldn't see any obvious spots for disabled drivers. As I say time and time again, it is not that I need to be near where I'm going but I do need to have the space to open the car door as wide as possible so I can get out. I did eventually manage to park and just about squeezed out, honestly I have to have the agility of an acrobat these days. But no matter, I'm sort of getting used to the fact that nothing is very easy these days. So I've got myself out of the car and start to make my way over to Tourist Information. Oh- Oh there is a problem. It seems that the whole of the town is in the process of having the pavements relaid which looks really nice, the trouble is although the path outside Tourist Information was just done this week, someone forgot to put any dropped kerbs in, so I couldn't get up the kerb. Pure genius eh? Naturally if you visit the town and are disabled you certainly wouldn't want to visit the Tourist Office would you? The only way for me to get in there would be to initially cross the road, go quite a way UP the main street which is on a hill, cross over, come back down the street, cross back again and hey presto I'm there. Don't tell me you are not impressed? Neither was I , infact I think it is totally unacceptable that I had to sit by a group of parked cars risking life and limb because I was basically denied access because of this blunder. To add insult to injury the disabled loo was right next door, so just as well I don't have to worry about that anymore! The staff were totally mortified, and while I try to give the impression of 'oh isn't this funny' I was really very upset. I cant even put my finger on it, you feel sad, and angry and frustrated at the same time, and in this day and age we expect better don't we? Whatever happened to best practice? Honestly I feel like I'm whistling in the wind, what is the point!?

Fascinating

Did you know I'm fascinating? Apparently I am although I'm blind to this myself I have to say. Last week I pottered over to see someone who is in the process of converting their barn into B & B, and they have had the foresight to make it all wheelchair accessible. They were having trouble as to where they should have the sink in the loo, so I was there to give them the timely advice. Although they had had various planning officers round, they found me to be totally fascinating. These were there words not mine I might add. From the moment I arrived to the moment I left they hung on my every word. I tried out the loo, looked at the shower, advised on the sink. Then I practiced opening the doors, getting into bed, trying out the wardrobe. After this I went through all the doors to make sure they were ok, and finally suggested better parking. They then proceeded to stand and watch me get in the car as I was going while saying how fascinating it all was. Quite.

Getting the best parking spot

Ive noticed that when I park my car in a disabled bay, there is nearly always someone parked next to me. Usually its an older person waiting in their car and eating something at the same time. Without exception I am glared at and given the evil eye from them, as obviously I am a 'young' person and so must be either not entitled to park there, or even if I do have a badge I am clearly malingering. They then stare horribly as I get me, the chair, and wheels out of the car, put it together and then scoot off. Usually they are waiting to stare again by the time Ive come back. Funny I was always brought up to be polite and respect your elders but I get the feeling this is not reciprocated.

Walltown Crags

Last weekend we went for a walk around Walltown Crags. This is a very picturesque part of Hadrians Wall/Northumberland National Park, about 3 miles from my house. Now, when I say walk, I dont mean walk, in my case I really mean roll. As it happened I spied that they had laid out 'wheelchair accessible' walks, so with my usual enthusiasm I persauded my husband that we should try them out.
I should have initially felt some alarm at the state of the car park which wasnt great and was rather an obstacle course for me, but hey this was the car park , and it would improve just once we were round the corner....wouldnt it? Er No. I was wrong, very very wrong. The paths were ok size wise, and although some quite steep parts in places, should have been ok with a brief push from my dearly beloved. The trouble was, no one thought that it was a bad idea to surface a wheelchair walk with....GRAVEL. Yep. Gravel. Pushing though gravel is about as easy as......well, pushing through gravel! Its really really hard on the arms. So I slipped and slided and ground to abrupt halts all over the place. But the only way was forward as the say. For the second part of the walk we left the gravel behind us as the path continued with flagstones. These were not well maintained, and in order to give it a whole rustic feel, there were several inches between each one. This is fine for feet but with wheels its a whole new story. Either I would get completly stuck by my front wheels and have to be rescued by my husband, or Id be pulled up short and catapulted about 20 metres forward landing in a muddy heap! Neither really boded well. So it was with great care I tackedled these stone. Roll, flip, Roll, flip, Roll, flip. I did this about 50 times, flipping my front wheels up over the gap and onto the next stone. Its bloody difficult I can tell you as Im not that strong. So by the end of our wheelchair walk I felt as if my arms were being ripped fom my shoulders, but Id managed it. Not sure if I will do it again though. And of course thanks to the person who thought gravel was a good idea, you really did your homework didnt you?!

What's in a name?

Part of my job means that I deal with a lot of people all the time. Infact never a quiet moment. These people fall into 2 distinct groups, disabled people who want me to do something about a problem, and Able Bodieds who are usually trying to do something for disabled people. Now I've become aware just how people still refer to those of us with disability in somewhat awkward terms. In particular the term that crops up again and again is 'wheelchair bound'. Infact someone was talking to me about a particular project and used this term several times while talking about someone else. Now I'm not overly concerned with political correctness, but I'm really not keen on this term. Certainly I am not bound to my wheelchair, take it from me, I can lie, sit, slouch and loll around the house with the best. When I hear this phrase used though something inside me takes a little sharp breath and I think 'Ouch!' So should I correct someone or let it pass? I'm never sure what to say. It usually happens with the older generation, so I'm not sure its up to me to tell people what they should or shouldn't say. So let me put it straight, for the record, we are wheelchair users ok?

Cross Fall

This is a technical posting so skip it if you are not interested. Now, I work in Penrith, and as far as disabled access goes its the land that time forgot. Sadly, its just murder to get round, which is a pity as its in the Lake District, and is a pretty town with lots to offer. The main problem for me anyway is the crossfall in the pavements. Ooooo what's this you ask? Well next time you are out walking , stop to notice the angle of the pavement. Is it flat or does it fall to one side? If it falls to one side then this is known as crossfall or camber. Its ok for walking, legs can deal with it, but wheelchair's are not designed to accommodate more than a very modest angle. This means that I'm going around town at a very uncomfortable angle. So its hard pushing for me, kills my back as I have to actively sit up straight, and also I feel unsafe that I'm going to topple over at any minute? What can be done then you ask? Well I need to change the camber bar on my chair. This is the bit that holds your wheels on. At the moment I have basically a city chair in that there is not much angle in my wheels. By changing the camber bar, I can angle my wheels so that the base of the chair is wider than the top. Must do it asap as I don't want to fall out of my chair in public!!

Shorts

Heres a conundrum... should I wear shorts to work? Given that its summer then I do need to wear something quite cool, and I mean that in all meanings! Obviously I just dont do skirts anymore so I need an alternative. Question is, just how scary are my legs? I cant stand them myself so could be grim on my colleagues!! But having run this by my boss he doesnt seem to have a problem with it, so from next week Ill be sporting those funky skater shorts. Whod have thought Id ever have worn anything like that? Funny or what?

I can stand up...

'No I cant, yes I can, no I cant, yes I can.... if I can just reach that thing overthere.....' Whoops, SPLAT... 'Oh No I cant, Im flat on the floor.'

I hate doing this, and mores the point I hate doing it twice in an afternoon. Have I learnt my lesson or not? No. Falling out your chair is a humiliation best avoided and if it must be done keep it to your own home. Public humiliation is the worst. At least I was in the house, but even I have to say that I went quite a cropper the second time and thought Id broken my leg. Not that it would be that easy to tell to be truthfully. But several hours later it just looks like some nice bruises are coming along.

NOTE to self... 'can I stand up?'..... NO YOU BLOODY CANT, SO DONT EVEN THINK IT!!!

An extra hand

On my way home today I called into Morrisons as I needed some nappies for my son. Now when out supermarket shopping I can just about manage to buy 3 items at a time. This is because I'm short, being now only 5'1''-I've lost an inch- and my thigh bones are short. So I only have a small lap to balance things on. Men can usually carry quite a bit more, but for us shorties its more of a challenge. Anyway back to nappies. These are awkward items, awkward not because of the size but because they are covered in plastic which makes them very slippery! So I got the nappies and they were popped in a bag by the checkout person. Actually I don't tend to use carrier bags as I try to stuff everything in my bag on the back of my chair, but nappies are just too big. So I made my way to the exit and then realised that the car park was on a slight slope. Just a bit, but enough to mean that Id need 2 hands to get back to the car. So I did something I said I would never ever do, I carried the bag between my teeth. Now I dislike doing this intently, it makes me feel stupid, embarrassed, self conscious and like the damn cripple I am. BUT needs must and all that. So as I trundled up the car park, a bag of 32 size 6 nappies hanging from my teeth, a car reverses out very very slowly driven by an old person. Obviously she hadn't seen me, but then who does these days? I could either try to get past her or with my recent run of fortune she was more likely to run me over!! I decided to stop and let her go. So there I am, sat on a slope in Morrisons car park with a bag of nappies held between my teeth. Thankyou God, Thankyou SO much. How to feel just a bit conspicuous!!! Its like I wished a hole would just swallow me up! To make matters worse a lady came up and asked me if I needed a hand, 'no thanks' I said through a mouthful of carrier bag, 'I'm just trying not to get run over'. Life but not as we know it huh?

Sack of Potatoes!!!

Yes I look like a sack of potatoes. That's the only thing with going shopping, you get to look at yourself in mirrors and shop windows. I'm suddenly amazed at how bad my posture has become. Given that I've lost loads of weight, a couple of stone, and my clothes have gone down several sizes, you'd think Id be looking slim and trim. Not a bit of it. I guess it has to do with being female, wheelchair designs and the fact I cant sit up straight anyway. Does my bum look big in this? Yep, I think just the fact of sitting makes your bum look big no matter how thin you are. Wheelchair's are just not that female friendly, certainly they don't compliment the female body as most chairs seem to dwarf most women. Then of course given that I cant sit up straight very long is the major factor. There are 2 reasons for this. When you have any kind of spinal problem, a lot of the muscles in your lower back stop working. Its not until you actually have to think about sitting yourself up straight that you realise how many muscles do this for you without you knowing it. I also have a pretty decent lordosis developing. This is medic speak for spinal curvature. Its pretty inevitable really. Like I said I'm going to be the Hunchback of Haltwhistle within the next 10 years at this rate! Lordosis is made worse by the type of seat you have in your chair. Unfortunately anyone with any spinal injury needs a bucket seat. This means there is an angle in the seat and your knees are higher than your hips. Certainly from my point of view it is generally more comfortable and more importantly it adds stability to your bum and waist, helps you to stay in your seat and not fall out!

Your worst nightmare

What could be the worst case scenario given that I cant walk and live in the middle of nowhere? You guessed it, breaking down in the car. But not only did I breakdown, I did so at 10.30 at night. Really it doesn't get much worse than that!

So, I'm pottering back home along the A69 when I start to hear a 'flap, flap, flap' sound. Fuck I think and stop the car. This is a difficult situation because although its late at night the A69 is a major freight route, so lots of big lorries going by. There is no way I can even contemplate trying to get out the car to take a look, so I decided to just make that breakdown call. I hope you remember that this is Northumberland and when I try to use my mobile, guess what.... There is no bloody signal!!!

Fuck fuck fucking hell, I've got no fucking fucking signal. I shout at the top of my voice. Yep those were my exact words. Basically I sat there for a few minutes mubling and shouting fuck in different styles and throwing a few Bollocks in for good measure, while I thought about what to do. By getting out the car I could guarantee Id be killed so this didn't look like a good option. Neither was shouting help out the car window an option either!! So what I did was basically shuffle, crawl and heave myself around the car at the same time having the breakdown number on redial and speaker. Eventually I found a rather contorted position in which I just about got a signal and I got through to a very crackly voice somewhere in a land far far away!! I explained my rather dire situation as well as I could to be told Id have help within the hour.....An hour?! Im a lone female cripple I need help NOW!!!!! Ok, thats not what I said, but I did think it. I shouldnt have worried, within 20 minutes the breakdown bloke has arrived and is mending my tyre, only to discover oh-oh, the spare is flat. Bollocks to that I thought and had a quick mental panic. Lets be honest, when did you check your spare? No one does do they?! So the guy takes the tyre off to the nearest garage to get it pumped up, leaving me alone in the car with only David Jacobs and Radio 2 for company!!! But fortunatly he wasnt long and gets me back on the road within another half an hour. I got back just after midnight!! Situations that I used to take in my stride as it were now have a whole new dramatic twist. Im not fearful but rather amazed at how life is now so different at times. For good measure heres a picture of the offending vehicle.

Autonomic Dysreflexia

Here's something I never used to know about. Autonomic Dysreflexia... bet you've never heard of it either? Anyway whatever it might be it looks as if I've had a dose of it over the last few days and not realised!!! So what is it you say? Ok, Ok, are you sitting down, then wrinkle that brow and concentrate very hard.............what happens is this, a signal is trying to get to your brain, but cant because of the cord damage. This causes a reflex to happen and the blood vessels restrict causing blood pressure to shoot up . The brain is trying to send a message back down to the cord to tell the blood vessels to open up, but this message cannot get past the level of injury either. So the blood vessels above the injury open up, but it is not enough to keep blood pressure down. As a result blood pressure just keeps rising which can cause a stroke, heart attack or death. The number 1 cause of this is a full bladder and UTIs.

Well I've had the most horrendous migraine for several days now and given my recent problems this looks like the main cause. So what can we do about it? The most likely option would be plan B. Plan B is a Supra Pubic Catheter, whereby you get a permanent catheter routed through your belly button or nearby. Its easier to control and you don't get so many infections as a rule. Its down sides are obviously it doesn't do a lot for making you feel 'normal', and it isn't readily reversible so pretty much once its done that's it. I have to be honest in that this isn't one of the events in life that I've been eager to try, you know I could probably have gone all through my life without ever trying this out. We'll see how it goes.

The Park

Im feeling pretty pleased with myself tonight and rightly so, infact lets all slap me on the back and shout 'Well Done!!' You see today I managed to go to the park with my son for the first time since September I think, more or less. Ok I admit we were not on our own but my husband helped a bit. He went with our son first while I scooted off to do a few errands around Hexham for half an hour. Then I called them and he said 'why dont you come up and see us?' I wasnt too sure as to be honest, the park is quite hilly and hard work in places so I wasnt actually sure I could get there. But I took the back route around the rear of the Abbey. This is actually a lot flatter but it has a definate disadvantage of being paved with old flagstones, but means it's a very uneven and unpredictable surface to travel over, so I took it rather carefully. I got there with no problems and apart from the heavy gate I didnt have a problem getting into the play area. The trouble with a lot of parks is that they have a sort of grid at the entrance to stop bikes getting in. This is also effective for buggies and impossible for wheelchairs. We had a lovely hour, ate a lolly each and watched him climb UP the slide and run down the ramp. Its what summer weekends are for. Anyway Im full of confidence that hopefully if I pick a quiet morning I will be able to take him on my own. Im willing to give it a try anyway!

Cripple City

Good grief the Metrocentre is Cripple City. Its full of wheelchair's, and I'm not just talking about the elderly here. Its about the only place I ever, ever see someone of my age being a wheelchair user. When you do see someone there is this quick look of recognition, I cant really describe it, sort of like you know you are all in the same club. Anyway I always find I stare at their chairs as I suffer a lot of wheelchair envy!!!!!! Mine is always the best isn't it? Well not today, someone had a set of X-core Wheels!! These are much lusted after, state of the art wheels which are also extremely cool. Why haven't I got them I think, with the little green monster of jealousy sitting on my shoulder? Well as they retail at about £300 a pair,that's the likely explanation. But hey, if you know someone who'dd like to send me a pair Id have to force myself to use them. Just kidding, honest!

Shopping

I went shopping today at the Metrocentre, Gateshead for ....underwear. Now I'm not keen on shopping at the best of times. Unlike most women, I see it as just a necessary evil. Anyway it was Marks and Spencer all the way as disabled underwear is sort of new territory. Its not something Id have given much thought to but like so much in my life, old experiences take on a new twist. So first of all I needed the size. I have no idea, we are talking bras here ok? Just so you know!! Anyway I'm sort of all back and shoulders these days so no, I really don't know. Anyway despite having me sit there the lady in the bra dept was absolutely perfectly professional. She didn't even flinch as she measured me then telling me I was most likely a size Z. She trotted off to bring me a few samples which I wrestled with as I tried them on,...not easy I must say, eventually making a choice.

So off to pay. I waited patiently in the queue, and as my turn came up, this woman behind me marched round and stole my place!!! This is the first time this has happened to me. Really I should have said something very rude and loud but honestly I was shocked!!! Have I suddenly become so invisible these days? Did she think I was sitting there for my health, or should I just be patted on the head!! Honestly, Im lost for words!

Total Inaccessibility

Last week I had to visit the headquarters of the Police in my professional capacity. See picture of the mystery building on the left! I was told they didn't have disabled access and were looking to put it in. Ok I thought this sounds straightforward enough, so I arrived at 2pm and first of all couldn't find anywhere to park. Now there were plenty of spaces but the trouble was that if Id have used any of them I wouldn't have been able to get out the car. Bit of a problem to start with but I can overcome this. After a few minutes driving around I did manage to find something that looked like a disabled parking bay, not exactly well marked but it did the trick. Pity it was at the top of a hill. But that was fine as I flew down to the entrance of the building, only to find.......When they said they didn't have disabled access they really meant it. Nothing, zip, zilch, absolutely no way could I get into that building if my life depended on it!!! Fortunately Plan B was a colleague who came with me who by now was marching in and out of the building looking rather disgruntled. Eventually someone who was a planner came out clutching, yep that's right plans. So we had to have our meeting standing/sitting outside as I couldn't get in. Pretty bad hmmmm? Their planner was about 6'4'' so left me literally with a pain in the neck. Anyway we got through that and then my colleague went inside to do a recce cos obviously I couldn't do it. I decided to go back to the car and head off to my office. Remember that hill I mentioned earlier? That's right you guessed it, I couldn't get back up the hill as it was too steep. If in doubt about a hill the best way to tackle it is to try reversing. That way if it is too steep you don't end up tipping over backwards and practically killing yourself in the process, thats worse case scenario!!! So I sat and twiddled my thumbs a bit and then decided the only thing was to look pathetic. It always works, as within a second or 2 a nice hunky policeman had appeared and then proceeded to pull me up the hill. 'oh thankyou' I said sweetly........ grrrrrrrrr!!!!

Old and New

Ive been in the situation over the last few years whereby we have moved several times, made friends, lost friends, renewed friendships and said goodbye to some. Overall its a good experience and probably you only realise the value of friendship with maturity. I do have a problem with old and new friends. When I meet someone for the first time these days, they just take me as a person who uses a chair,its no big deal, part of being me, and no one worries. But when I catch up with old friends and family I have to say I feel utterly embarrassed, uncomfortable and really just want to squirm in my seat. I know you see, really I do know, that they want to know but they dont want to ask, so we just end up going round and round in circles as it were, as no one wants to bring the subject up. SO, If you used to know me, or just havent seen me for a while please please please dont feel anxious about saying 'OMG what happened to you!!!?' After all its perfectly normal to want to know, Im not going to break down in tears, and Im quite happy to tell you. What I really dont want is to feel bad that you feel bad and you feel bad because you dont want me to feel bad!!!!!! Arrrgh!!!!!!

The Dangling Conversation

My husband is a man of few words where I am concerned. Let face it the poor man can hardly get a word in with me as the wife anyway, so he keeps his own counsel a lot. Just like most men I guess. Anyway we were having a fairly serious talk about several unresolved issues when he delivered the verbal knock-out!!

'Well', he said 'you are quite seriously disabled you know..........' S L A P!!!

So how to shut me up in one. What is the retort to that one eh? Its the one thing that is going to get me feeling bad, uncomfortable, ruffled. Not that he was trying to upset me, it wasnt that sort of discussion, he was just making an observation.

Having spent at least 2 minutes thinking about my next line all I could say was

'Weeeeel, I dont know.........'

So much for my sharp remarks and witty repartee, got him there didnt I? Ok, so I didnt but it got me thinking. Is this true? Am I in the realms of seriously disabled? How serious is serious? Serious compared to whom? Am I? Am I? Really I dont know, what is the perception of able bodied people when they see me? What do they think, what do they see? I dont know as I dont see me with their eyes so its hard to make the judgement. I know I dont feel disabled but maybe I am? Or perhaps the concept of disability is only a mental one. But lets not go down that route of philosophy tonight hmm?

Where I work

I looked at recent postings and thought mmmmm this looks a bit dull, the subject matter a bit icky, so lets move onto something else for change. Here is a nice picture of where I work. This is Penrith Town Hall set in the Lake District and North Cumbria. Its a very pleasant town with lots of interesting buildings that I cant get into. As my role is that of Access officer this is a situation that needs to be worked on. You know disabled people have a very large disposable income and its all going to Tesco cos we cant get in anywhere else!!! Seriously why do shops turn away potential customers? Its hardly rocket science to get rid of that 3 inch step and put an incline in. And what about those businesses that have a little sticker on saying to 'press for assistance'. AS IF! What, Im going to sit on the street and do my banking there? I DONT THINK SO!!! Take note, some of the worst offenders in Penrith are Banks and Building socieites. I cant get into either of mine and its just not right, decent or acceptable.

Feeling peeky

Its been a funny old weekend in Haltwhistle. Very very quiet, which is probably just as well as I'm not quite at my best,.. just for a change. So how am I progressing with these catheters after about a month now? Well to be honest I'm not too sure. While I have the practicalities all down well, I'm not sure if I'm going to be able to live with this long term. I have had 2 UTIs in a month. This means I'm taking antibiotics for 10 days on, 10 days off, and then another 10 days. If this is the way its going to be then I really don't know how sustainable it is over a few months let alone years. Apart from the fact that its pretty unpleasant for me, its actually not good for me. I've been doing quite a bit of reading around the subject of course.... as you do and while some people seem to manage well for years, others fall into the constant infection category. I'm very keen on the whole hygiene routine, frankly I'm surprised my hands aren't red raw from the whole performance, so I'm sure that's not a problem as such. It would seem likely then that I'm an individual who is just susceptible to this. So what's plan B? Plan B would be a supra pubic catheter which requires surgical insertion. What they do is route it either through your belly button or make a whole in your abdomen. Now I cant say this really thrills me, but if I'm just going to have to take antibiotics forever then that's not great either. The SPC significantly reduces UTIs, so I have to say at the moment, and feeling as I do I'm slightly inclining in this direction.