Sage

We went to the Sage in Gateshead a couple of weeks go just to have a quick look. Also my son was convinced it was the train station in Underground Ernie so we had to go! The Sage is the North East premier concert hall for classical, folk, world, and everything that isn't mainstream music and I suppose its a few years old now, maybe 6 or so? Now the funny thing is all the disabled parking is up the hill behind the building which is a major design fault to put it mildly. Its actually very steep so flying down to the entrance is great but going back to the car is just murder! This is a photo of us having a look at this wonderful musical contraption. I try to include pictures of me not particularly out of self gratification, more like ungratification actually. I'm not keen on seeing myself too much. I can do front on shots but side and back shots cause my brain to short circuit and freak out a bit, because they look nothing like me, or so I think. Its work in progress I suppose, Ill get there in the end.

"I Am that I Am"

I find it very funny as in both ha ha and strange, when it comes to the perceptions of society at large. I'm thinking in terms of how people view 'being in a wheelchair'. Oh you know so and so, he's is a wheelchair didn't you know? Its that sort of attitude that I find odd. I think its because the public at large view disability as the worst thing that can ever, ever, ever, happen to someone, and certainly using a wheelchair the worst of the worst. Being someone who is 'stuck' in a wheelchair I can say that most of the time now I don't even think about it. My mental perception hasn't really altered and I don't see me as you see me. So really and truly for the most part I don't care about it, don't think about it and don't feel as if my life is somehow more terrible, or painful than anyone else's. But still that thought persists. Its not until you re sitting where I'm sitting that you realise in the grand scheme of things I am who I am, and always will be, and there isn't a great tragedy. Not any more that is.

Bide a while

Handily enough these days, should my husband find he is simply too exhausted to lift another foot after a hard mornings shopping in Hexham, he now has to look no further than the handy wheelchair wife. The wheelchair wife comes in one size and colour but can be taken around town and all accessible venues, and is just waiting for that 'I cant take another step' moment in the day! The wheelchair wife comes complete with bag to put all your rubbish in so you dont have to carry it yourself and a nice comfy lap to sit on to rest your weary bones. However it should be noted that the wheelchair wife is rather high maintenance and also tends to be clumsy in household situations, and should not be let loose around the house on her own. Consequently only those with the patience of a saint should consider a fulltime wheelchair wife!

Hands

I have this recurring nightmare that I cant use my hands, in the dream I'm trying to pick up a cup of tea but keep failing to do it. Eventually I succeed but I always wake up feeling distressed. I expect it is quite a rational fear, although I don't spend my days worrying about it, I'm not great on worry generally. Thing is I suspect the first signs of arthritis are starting to appear in my hand. I know my right hand hurts me quite a bit at the moment and a couple of joints seem sore and slightly swollen, hmmm... sounds arthritic to me. Unfortunately I'm not that old for this to happen but given family propensity and the fact that my hands take quite a lot of work day in day out, its not that surprising. Either way I'm not taking myself off to the doctors just yet,she will only send me to see a rheumatologist, and I think I've seen enough ologists for a while anyway. Ill save this one for next year at least.

Child Labour

As you can see Im a big fan of child labour... start them young is my motto, and you will note that Ive licked my son into shape pretty well!!! Why push when he will do it?!! Of course being only 2 he has realised that he can actually take me where he wants to go pretty easily. With a pull and a push, I suddenly find myself drifting off into totally the opposite direction with him shouting in my ear. Amazingly for a 2 year old he pushes pretty hard, I can say, and I dont really like resisting him as Im always in fear of falling over so I just have to go with the flow. Other things he likes to do is kick my wheels and tell me not to forget my wheels when getting out the car. He is I have to say a really nice little boy.

Appointment with Morpheus

Sleep perchance to dream,... Thanks Bill. Sleep is something I don't get much of. It just doesn't happen for me at the moment and as a consequence I'm totally and utterly exhausted, shattered, knackered and every other adjective you can think of. I don't look good, infact I look pasty and tired and my bags have bags. Despite early or late nights I'm guaranteed to wake up every single hour usually as a consequence of pain somewhere in my body. I also get up early as I need longer to get ready for work and so my sleep pattern is terrible. Whether its too much sleep, not enough sleep, or even the wrong kind of sleep I'm not getting any sleep at all. Last night I slept in one of our spare rooms, We have a choice of bed sizes and mattresses available and we also bought a wonderful memory foam mattress recently which is so wonderfully comfortable, that is until I wake up again. When I do get an hour in I find I'm having such colourful dreams that I wake up feeling as if I've just been running around in a war zone. So tonight I give in, that's it I admit defeat. I have a small stash of amytriptiline, prescribed by my GP. Its an anti depressant first and foremost but also useful in the treatment of pain and sleep problems. I've used it before and its effective, so effective that I will be asleep half the day tomorrow, but I'm getting desperate!

Hardware Failure

I was very busy rattling around Penrith on Wednesday, banging along the pavement at a fair rate of knots, bang bang squeak rattle, when I suddenly thought, Hang on I'm rattling here... a lot. Now a rattle isn't a good sign, it could be a very bad sign, and at best its very disconcerting. I have visions or should I say nightmares of an axel pin breaking and me being thrown to the floor and killed... or something equally as dramatic. I should think realistically speaking its very unlikely to happen, still its one of those secret fears that is forever lurking at the back of my mind.

Anyway I gingerly crept back to my office where I tried in vain to see the cause of the problem. The only way I can really do that is to sit on the floor which isn't that appropriate at work, so I had to live with it. On later inspection it would seem that a front axel pin is indeed loose so its time to get the socket set out. However this does explain my braking system. I do actually have brakes in my front wheels, it seemed like a good idea at the time, but as I am now more confident in hurtling around it seems less useful. I don't know how they work to be honest, I think its something to do with critical momentum, but my brakes had been working even though I was only at relatively low speeds. Its an alarming system really as you suddenly end up lurching forward as your chair slows down, but of course I've forgotten the system is there in the first place. Note to self to make sure next chair doesn't have this!

The Few

I'm currently trying to rap my brain around the Disability Equality Schemes that have to be in place by the end of December,and I've been given the task of putting together this nice bit of policy over the next couple of weeks. Me and my trusty sidekick decided we needed to get together an action plan in order to formulate the action plan. I kid you not, and rather than consult on the plan for the plan we thought it would be a good idea to consult with disabled members of staff as they would hopefully have a bit more inkling as to what it was all about. What a fab and whizzo idea I said, and she felt pleased as obviously we want to be as inclusive as possible blah de blah de blah, ticking the boxes, touching base, and ultimately thinking outside the box in local governmentese. She volunteered to contact human resources to see if they could tell us how many disabled members of staff there were and who they were so we could speak to them. Now my council has about 200 employees, and we hoped we'd get a small group of say half a dozen. So how many do you think? 20? 10 perhaps? No, the number of disabled employees is a grand total of 2, and 50% or that total is me, so as I don't really want to keep consulting with myself we are having to use plan B. At this rate we might get as far as plan J before we actually get anywhere!

My GP

My GP is an absolute star!! I really cant describe her in better terms. I saw her today for 50 minutes, I really think she likes me as a patient. I suppose Im so much more interesting from a medical point of view, after all I think its mostly the run of the mill sort of stuff here with a higher than average number of older patients. So from her point of view she must see me on her list and think Great, something really interesting!! Lets see I bring so much to the practice, incontinence, chronic pain, skin infections, sores, bladder infections, bowel problems, paralysis, chronic spasms and so on...did I miss anything here? Anyway the list could be endless, so much variation, never a dull moment. But on a more serious note september is full of medical appointments for me which I could do without, but she is really good at phoning consultants right there and then to chase things up for me and when I get home she has left a message on the phone for me. She regularly phones me up just to see how I am and really and truly takes a genuine interest. I always feel a lot better from just seeing her, so she must be good at her job.

Acceptance

I've a problem with acceptance which isn't that surprising, but I found it wasn't so much about my acceptance but more the fact that other people didn't want to accept my life. How do you cope, It must be awful for you, we are praying for a miracle, cant they do something? etc, comments like that although meant well don't do a lot for self esteem. I had major issues with looking at photos, and seeing myself in shop windows...... OMG who is that person!? I've been shocked at seeing the person I had become. I have found it a lot easier to make new friends and acquaintances because thay all accept me for me and have no previous points of reference. They only know me with chair not without. On another level my son is now 2 and a half. I don't want him looking back and seeing a miserable sick Mum who was always unhappy and never had fun. I fully intend to be a fun mum because I don't want him to be ashamed of me. I also want people to see me, and not the chair. Even my GP commented that no matter what I'm always upbeat, which is pretty much true. Even on my down days I try to pretend to be cheerful, it usually helps as eventually I start to believe it.
So how do you accept? If you don't accept and move on it will just eat into your soul and make you bitter. I don't want to look back and regret my life, we are all here come what may, and maybe life's experience have made me see the grass as just that bit greener, the sky a little more blue and the rain as just a soft mist.

Ouch Ouch Ouch

From time to time I get severe skin hypersensitivity. This is sort of a contradiction in terms I suppose, but I think its a consequence of jumbled neurological signals. I've mentioned it before on several occsions but this is quite unpleasant. Last week I was in a situation where anything I wore made me feel as if I was suffering from serious burns on my legs. Good job it was a Sunday as otherwise I would never have got to work. So I spent the main part of the day lolling around wearing very little. Then this week I was getting major skin pain which appeared to be coming from the seams of my underwear. Very strange as it made be feel as though I had a pocket full of marbles. Most uncomfortable. Still it seems an infrequent thing which is just as well as I have enough discomfort to last a lifetime thanks, so anymore I can do without.

Wheelchair Skills

I spent some of the w/e practicing my wheelchair skills...Like I'm supposed to have some, but to be really honest with you I'm totally rubbish. I'm trying basically to get the hang of getting down kerbs, which isn't easy. Frankly I think its on par with being a circus performer, but there you go, its amazing what you end up learning in life isn't it? The theory is that you do a wheelie and then sort of drop down the kerb and hey presto! How cool is that? Well I can honestly say I have yet to achieve any success whatsoever. Cant teach an old dog new tricks or in this case any tricks at all. My balance is totally awful, well it was when I was walking so its even worse these days. I can't even do a bloody wheelie let alone get down a kerb! Many bruises later I thought Id try getting up a kerb. I know how to do this, Ok well we are talking theory anyway. I guess my back is particularly crap as I can just about manage an inch which is no good for about town. Somehow I don't think my hip movement is enough or I'm lacking strength somehow. Either way I will have to rely on finding a dropped kerb which let me tell you, in Cumbria is as common as 4 leaf clovers.

The Camels Back

Every week something comes along which makes me realise that actually Im a bit worse than I like to believe. Usually its something so minor and trivial that most people would never notice, but for me I guess you could say its the straw that breaks the camels back.

Today is a for instance. It wasnt a difficult day or anything like that, infact it was quite a nice day work wise. I was out and about on a bit of a jolly around Cumbria with my boss, and it was his turn to drive. "Do you want to alter the seat there?" he said. I did as it was far too upright for me and I slouch like hell. "Theres a button on the side". So I pushed the button and tried really hard to lean back into the seat. Nothing, I tried again, but no I just didnt have the movement or stength to alter the position of the car seat. Pathetic really, just utterly hopeless. Eventually I had to use my arms to push back from the dashboard. Its the small things that make me feel so crap.

Community Rehab

"Dear Mrs H.... ( that's me)
The Community Rehabilitaion service records show that your review date is now due. (My, how time flies) If you are experiencing any new problems with your SCI (!!) please contact our service. etc etc etc."

That was this weeks exciting letter along with multiple appointments in Newcastle for next month. So I'm going to call them because if I'm honest I really haven't cracked this getting out of bed routine first thing in the morning. Currently I have to wake up at 5am so I can hope to be in work by around 9.30. Yes, everything takes hours. Funny thing is that, SCI robs you of your own time.

Currently I have all the grace and finesse of a middle aged walrus having a bad beard day. Yes, yes I know you must think I'm exaggerating, but if you've ever 'been there' you will get what I'm saying. I don't know whether my technique is wrong, if my lower back muscles are shot to buggery or what, but try as I might its almost impossible for me to get up without a bit of assistance from long suffering hubby. So I end up flailing around looking particularly undignified. What I really need is some kind of James Bond ejector seat type bed that will fling me out, landing washed and dressed in my chair ready for another day. Failing that I need some sort of device that at least fits my bed. Ok I admit it, I have an Ikea bed which doesn't help as unless Ikea have suddenly cornered the market in Swedish aids for the disabled then they are a non standard sized bed. Consequently, most of the bed related items don't quite fit. Don't quite means in bed terms, never ever in a month of Sundays with a blue moon is it going to fit my bed. But no way, absolutly no way Jose Mourinho, am I getting rid of my super kingsize Ikea bed, especially as Ive just forked out a small fortune for a nice Tempur matress, but that's another posting entirely!

Freebies

I quite often get freebies through the post. This week I got a free Rucksack from SpinalNet along with flashy looking pen. Oooo how nice, almost makes it all worthwhile...the reason I got this freebie is because my friends Charter Healthcare, along with Colourplast, sponsor SpinalNet so they already have all my details, and thought 'oh we must send her new bag'. Handy, as I needed a new one, only I now have bag with SpinalNet all over the back. Nothing like telling the world is there?

Thinking......

I am sometimes completely confused by my and other peoples thinking. You see I don't think I'm disabled, I don't feel it, I'm not ill as such I'm just a bit incapacitated aren't I? So should I start thinking like a disabled person, how do they think anyway? Would life be any easier if I thought of myself as disabled? Disabled in what way? I suppose I have been brought up to think that you are only disabled in your mind, so if you feel positive then you aren't disabled. But then again given the number of shops I'm unable to get into, the ongoing lack of opportunity, then perhaps I am. Whew.... really this is a bit of a hot philosophical discussion isn't it? Best left for another day.

Who are You?

Yes Id like to know. You see I know lots of people read this every day, but not many leave a comment, Why, are you shy? And if you are one of my regulars you could even e-mail me and say hello. Go on, Go on, Go on!

Shopping

Unlike most women I don't care for shopping, its a necessary evil and as for leisure pursuits I can think of better things to do with my time, like marching up Scafell for instance. OK, perhaps not, but anyway you get my gist. My shopping experiences are pretty much limited to places like the Metro Centre and central Carlisle, and for things like clothes then I can manage fine on my own...Ho ho, no carer for me! But I have to admit I hadn't been able to get round Tesco and push the trolley and do the shopping for a week. Until recently that is. I know people can do it in wheelchair's, I've just been too nervous and shy to try it. I didn't want to look foolish or find Id do a bit and be unable to continue. But hey guess what, I did actually manage to push a trolley around with a load of shopping in it as well. There are a few tricks to this, first thing, go when its quiet so you don't have to keep avoiding loads of other people. Then work on your technique, push, wheel, wheel, push, wheel, wheel, and so on. Finally take it slowly, there is no rush and it stops you veering off course too much.

I'm feeling quite smug with myself for now being able to do it. Its another bit of independence and means I don't have to force my husband with threats to come with me!

Name and Shame 3

By popular demand, name and shame is back. Just the one picture this time as the weather took its toll on my outing, but it serves its purpose. Charity Shops. Now as such I'm no big fan of charity shops these days, they are ok for the odd book but that's about it. Of course that's just as well because I cant get in most of them as they must be as a group, some of the worst establishments on the high street for access. I guess their argument would be that they are a charity and cant afford it, but of course charity or no charity they still have statutory obligations which most of them fail at miserably. Id have thought given their charity status most of them would have been trail blazers in this field, but as usual I'm wrong. All I can say is that I don't really care one way or another, but I would like to have the opportunity just to have a mooch around once in a while for a new book to read, an obscure CD or even a 'collectible' record. Unfortunately the disabled life means that opportunity is often lacking. Be ashamed Oxfam, be very ashamed.

Disability Awareness

The issue of disability awareness training is a real bee in my bonnet at the moment. Why? Because no one seems to have it. I did this training a few months ago, and you might think its a bit odd as hey, I'm disabled!! Yep, but I have absolutely no points of reference when it comes to blindness, deafness or learning difficulties so like most of us I'm fairly one dimensional in my viewpoint. Ok that's not true, I'm probably 2 dimensional as I know what its like to be AB'd anyway. So as part of my job, I go around asking shops and businesses if they have had any disability awareness training, and what do you think? Given that its available free to anyone who wants it Id have thought it would have been taken up more than it is. But no, no one in the whole of Eden seems to have had any disability awareness training whatsoever. This is major tourist country so it seems very short sighted to me that if you can increase the number of people coming into your business and also returning you'd do it, but no,.. seems people just cant be bothered.

The stock answer that I get all the time is " Oh its just common sense isn't it?" Er no.... IS THAT WHY YOU ARE SHOUTING AT ME BECAUSE IM IN A WHEELCHAIR? Of course I could have learning difficulties and need patronising even further, so YOU.....NEED.....TO......TALK......VERY.........SLOW-LY.........AS.........WELL? I am sometimes completely ignored by the person I'm trying to talk to because as I'm so obviously witless so they talk to my 'carer', this is usully my boss as my husband has the sense to wander off and pretend hes not with me!

So right there goes common sense flying out of the window along with that flock of pigs. But no one wants to take up the free training on offer. How crazy is that!?

How do I feel?

I have a new work colleague who seems very nice if a little direct. Within about 3 hours of meeting me she said "so can you feel your legs at all then?". I just stared at her a second, coughed, spluttered and then went, "er, well, ramble ramble ramble". On the one hand I'm not surprised at what people say but I am taken aback at their directness sometimes. Perhaps its just me, but I like a bit of a social preamble before I ask too many questions, or rather I like people to volunteer or share personal information.

Anyway it got me thinking, I wonder what people think? I've realised that general thinking has it that once you have a SCI through whatever cause, that's it, you don't feel anything at all. See a previous posting here. But that's just not true, so how would I describe my own physical feelings? Firstly everyone seems different, we get so many crazy neurological messages bouncing around that everyone's body interprets it differently. So on an average day I usually get some or all of the following sensations.

Firstly the general feeling is like you've just had a filling at the dentist. The anesthesia is just starting to wear off a bit so you have that bit of feeling coming back. Its not much but just a bit. Know what I mean? If you kicked me Id know about it, but you could tattoo the whole of the Liverpool football team on my bum and I wouldn't be able to tell. Then I have lots of little muscle spasms. The big ones don't happen too much, but I get this thing whereby I feel like I'm being flicked by a rubber band all round my legs, ping, ping, ping, and if I look carefully I can see the muscles doing their own thing sometimes. I have a very irritating sensation mostly confined to my right leg which feels like I have a drill inside my knee and quite often I feel as if my whole leg is vibrating only its not. Drives me nuts! I have a general feeling that someone has come along with a sword and sliced me in half, the bottom bit doesn't feel connected with the top. The worst sensation is that I often feel as if I have spiders running up and down my legs, which makes me almost physically jump, and finally I have a lot of pain around my backside and lower back area. I guess its neurological pain in that it feels like the dentist again. Its very much that cold pain sensation you get when the dentist prods a nerve only I have it nearly constantly and its very very intense at times.

So there we have it. Without sounding ungrateful a lot of the time I do wish I couldn't feel anything, I think life would be a lot easier.

In bed

Every so often I get the nice people from OT in Hexham call me and say 'oh we have something new for you'...and they later pop round with the said item of equipment. One of the latest items seen here on the left is a bed ladder. Please note its not my bed but the ladder is identical to the one I have. Now I'm not the most graceful or elegant at getting up in the morning and I have bemoaned this fact for sometime. So they bought me this. The idea is that you stick it over your quilt and then use it to pull yourself up. I think its something that looks very good as an idea, but hasn't really been cracked practically. So what are you supposed to do? Apparently you have to secure it to the bed clothes using safety pins. Is this a good idea I thought? I certainly didn't think so, but for a week really gave it my best shot. But my suspicions were right in the first place. The pins either come off in the night so I've ended up sleeping on top of them quite often, or they rip the quilt cover. Either way it doesn't work. So I'm back to flailing around in the morning, grunting like a tennis player and relying on my husband to give me a push. Sounds attractive hmmm?!

Pet Peeves

I fear I'm turning into one of tv's 'Grumpy Old Women'. Actually most of the time I'm pretty cheerful, pretty upbeat and my usual cup-is-half-full self. However I do find that I have a tendency to moan, grumble and curse to myself about things in life, but I try to keep this to myself as I dont want anyone to know Im a real misery! This could be as much to do with age as situation, but who knows? Anyway here are some pet irritations of mine, and also other people in my position. Its not a definitive list, but I hope it will bring a smile and or make you think. Please suggest some others if you feel like it!

1. ramps that are too steep to be safe.
2. my husband leaving stuff on the floor of our hallway.
3. not being able to go to a friends house because most of them have steps.
4. old people......you know why.
5. gravel.......who thinks its a good idea?
6. anything to do with parking.
7. bowels.
8. having to plan trips rather than being spontaneous.
9. trashing the cuffs on my nice clothes.
10. dropping catheters and related stuff on the office floor and having to get someone to pick it up for you.
11. going down hill in the rain.
12. when people say 'oh you have done this before' when you do a chair to car transfer or ask me if I have passed my wheelchair test.
13. I also HATE people telling me how lucky I am that I don't have to walk anywhere anymore... do they realise what they're saying?!!
14. People INSISTING on helping me into the car and then spending 10 minutes trying to figure out how my chair comes apart.
15. Finally this one happened today.... realising that the lock on the disabled loo doesn't work properly just as you are doing catheter related stuff!

Miserable Cripple

Yep that's me, well certainly I was today. Id gone to Carlisle to pop into the bank. First of all I have to go to Carlisle because I cant get into the ones in Hexham or Penrith. Going on a Saturday isn't my favourite thing but needs must. So I couldn't find anywhere to park for ages and when I got to the bank, it was shut! Ho hum.... never mind, I decided to go over to Cranstons to get something yummy for tea. If you don't know Cranstons, they are a very fine quality butchers across Cumbria and Northumberland. Now, I don't actually recall going to the one in Carlisle but I've been to plenty of others and they are all very good for wheelchair access. I trundled up only to see there was a substantial step at the front. On the left hand side was a set of double doors and a very small step of about an inch. Not the easiest thing because it meant I had to flip up the step and push the double doors at the same time. Didn't work, I got stuck in the doors and had shout 'help, let me in!' Embarrassing. But they have a decent ramp inside. Its actually quite step with carpet, so I put some effort in and started pushing myself, when BANG!!! 'WHAT THE FUCK?' I shouted, or some sort of similar expeletive. In an effort to stop myself ending up on my back I managed to reach out and grab a chrome post at the side of the ramp. In front of me sitting on the floor was a girl about the age of 5. She had run down the ramp and straight into me. No parent anywhere in sight. Instead of jumping out the way she just sat and looked at me. I was still holding on for life as the ramp was that bit too steep to let go on. 'WILL YOU MOVE?' I said rudely and loudly.... she just sat there and stared at me. I was rescued by an old lady who told her to move. It was just really horrible for me. I felt trembly and upset. Embarrassed at myself, frightened because I thought I was going to fall, angry that the parent never appeared or even bothered to speak to me to apologise and cross because I shouldn't have sworn so loudly near this child. I even felt shocked and tearful for about 5 minutes or so, I suppose at my own general frustrtion at life. Its never the big things that upset but always something relatively insignificant.

Listed Buildings

...Drive me mad! Which is funny as its my job. If I had a pound for every time someone says to me 'oh we cant do anything about the access you know, its a listed building', like Im stupid; Id be a very rich woman. I didnt know and I only work in planning hmmm?!!

Of course it must be one of the biggest fallacies ever that listed means you cant do anything to a building. Like Blenheim Palace isnt listed huh? I did some research on the stats of all this and what it means to be listed. 90% of all planning applications are approved for listed buildings with only minor or no alterations. Its easy to have work carried out on something that is not an integral part of the building, like a step for instance. It is of very little historic interest whether a building has a step or not most of the time. I live in a listed building myself and I couldnt knock out our fireplece but stick a ramp in, no problem.

I havent worked out if its said in ignorance or is just general cop out, but I suspect by larger institutions its definatly the latter! Particularly banks,.... dont get me started on that one!

Camber

You may be able to see from the above pictures that I've changed the set up of my chair a bit. Notice the red bar? What I've done is change the camber bar. Thanks to the generosity of my employer who paid for it, a camber bar is the bar that holds your wheels on. Depending g on the angle of the bar your wheels can have a wide base or not. I've changed my wheelbase from 3 degrees to 6 degrees which is quite a difference. The advantage in doing this is that it increases stability and also seems to increase speed. I requested this at work because the pavements in and around Penrith are scarily uneven and on more than one occasion I have felt as if I was going to fall out! Haven't yet fortunately, but that unsafe feeling is rather alarming. It also has another positive effect for me anyway in that it lowers the back of my seat by about 1cm. I find this quite a bit more comfy and have noticed I feel a bit more secure.

The disadvantage is that you have to make sure you can get through door frames. I measures this up very carefully at home and it gives me very little room but its still ok. A few more degrees though and I wouldn't make it. I haven't got stuck anywhere yet because of the wide wheelbase but I suppose its just a question of time.

Figure of Eight

Get one of these and YOU WILL DIE!!!!! A timely reminder from a friend last week and hey presto look what pops up? Pressure sores are the potential killer every wheelchair user has to contend with. We are constantly being reminded of this by hospitals, doctors, physios, nurses, practically every one we ever come into contact with, check, check and check again. Change position, dont sit or lie too long in the same place etc, etc. I consider myself to be zealous. I do constant checks, shift my weight round and try to remember to do everything Ive been told, and still, this little bugger appears. I noticed it at lunchtime yesterday after spending sometime doing various ablutions. To be honest my first thought was 'shit Ive got ringworm'. Yes, yes I know its ridiculous but thats the sort of thing Id think of and also the nature of the wonky figure of eight. So I peered down and poked it, 'hmm' I thought 'it doesnt hurt so it must be ok...'. What? Sorry, what did I say there? You know sometimes I just cant believe what I think, I even caught myself in mid thought there. Of course it doesnt hurt you idiot.... Er yes well old habits die hard I suppose. So I spent ages thinking how the hell did this appear, where did I get it what was I doing, why didnt I notice it? Nope no idea, then suddenly the light went on in my head and I realised that I had spent all day working really hard in my office, writing lots of stroppy letters to people. Anyway I had put my keys in my pocket and forgotten about them, So they had been working away for 7 hours against my skin and there we have it a nice presure sore. Daft or what? When when when will I learn? It will take a while yet I suppose.

Trust

I have big issues in my life surrounding things like trust and control. This is because I don't essentially trust people and I like to be in control. Ok, its mad to say I don't trust people because I do, but what I don't trust is the physical aspect that is now a part of my life. Being now a wheelchair user, it is inevitable that from time to time I will need help from someone in getting from A to B. This happens quite a lot in my work to be honest but also happens occsionally when I'm just going somewhere. Surprisingly I don't get my husband to help very often, this isn't because he is hopeless, far from it, but he is usually having to deal with a clingy 2 year old, and having only 1 pair of hands it means that I have to take help where I can get it. It is I have to say completely unnerving, frightening and perhaps a bit humiliating having to get several men to lift you up somewhere. Its even worse when they drop you. Because most people don't have even the first clue in lifting a wheelchair its just a recipe for disaster. At first I tried to give instructions, but I've now realised this is almost hopeless, so my strategy for dealing with this is just to hold on very very tightly and shut my eyes really hard, that way if they do drop me at least I can't see it coming.

So like I said trust is a big issue. I probably have 1 person I can think of who I know wont drop me and that is worth its weight in gold at least.

My Mum

My mum came to visit last week and she really is quite remarkable. I mean that in a good way. For someone of her generation she seems to have a great capacity for not fussing, its a rare thing, I can tell you. If you look at it logically it cant be easy for her as she has to deal with her child in a wheelchair, not something you ever think is going to happen. I know if it was my son sitting here Id probably be mortified, but she just raises an eyebrow and says nothing. Cheers Mum!

Nice picture

Bit of a quirk in the blogger programme at the moment, sometimes you can get pictures to load, sometimes you cant. This is me after doing the sports relief mile, pretty pleased with myself to as you can see. Will I be doing it again, oh yes watch out everyone here I come!

12 Hours on.......

Sunday afternoon, and I had one of the worst nights of recent times. I now put it down to food poisoning as the whole thing came on very quickly. Not only did I have projectile vomiting but also the most severe diarrhea for years. So I spent almost the whole night in the bathroom either lying on the floor groaning, or perched on the loo throwing up into a bowl. Eventually I managed to get myself into the shower where I sat under warm water for half an hour cleaning the crap from my body. I suppose its typical of me that I had to do this the one night my husband was away....hmmmm! I can only say that I felt so terrible I could have died, I had severe stomach pain and lets be blunt this is absolutely the worst thing that could happen to anyone with a disability. I think its probably even worse in neurological conditions as quite simply there is no control whatsoever especially when it comes to bowels! I feel utterly robbed of any dignity I once had , still I guess its good practice for the future.

Sick as a dog

My son brought a present home from nursery this w/e. Its a vomiting bug. So I'm sitting here right now, throwing up as write. I should be in bed but I'm not sure how safe that is at the moment. See, the thing is I'm on my own as hubby is in hospital in Newcastle having a minor op. So I have to look after myself and our 2 year old son and not forgetting the dogs. If I go to bed and throw up, well imagine it yourself. Basically Ill just end up lying in my own vomit as I find it quite hard to get up thanks to crap back muscles. And as for changing the bed clothes, absolutely impossible! So of course I will have to suffer again a while longer.

At times like this I really wish I had a carer, its bad enough cleaning up after yourself when you can but tonight I could really really really do with a bit of extra help. But I don't get it and unless my head drops off then I won't get it in the future. Shouldn't there be some system of avoiding these situations? Shouldn't someone in my position be able to call someone and ask for some temporary help? Doesn't it stand to reason that as I get higher rate mobility then I'm not going to be very good at getting around hence the fact I might need some extra help? No obviously not. Now if I had learning difficulties Id get so much help I wouldn't know what to do with it. I somehow think a large section of people are being forgotten about or left out or something like that. It can't just be me can it? Excuse me while I throw up.......Then I've got to get this hopeless cripple to bed somehow.

Sports Relief 2

You may remember that I promised to do the Sports Relief mile, and 2 weeks ago I did just that. It was a scorching hot day and we arrived with an hour to spare. First problem was where to park? To my mind it would have been sensible to put some sort of disabled parking on the riverside at Newcastle as it is flat, but we had to park in a car park which was up a hill. Fine for going to the starting point but not for coming back. Anyway as I was parking my car who parked next to me but 100x paralympic gold medalist Tanni Grey-Thompson. She said hello to me and we chatted for about 10 minutes.

The start was on the Newcastle side of the river. There was a row of about 20 loos but I couldn't see a disabled one, not that I have to worry too much about that these days, but that's not the point is it? The start was actually up a hill, which was difficult. Because they didn't start wheelchair participants off first it meant you couldn't get a bit of speed to go up the hill because if you did, you'd end up running into the backs of peoples legs. As you can see by the photos, I'm not exactly exerting myself. Anyway that was the main problem, the course was very undulating. This meant going down you couldn't pick up the speed you wanted to for fear of taking someone's ankles out, so I ended up slowing down and then being unable to get a good speed up for the uphill bits. At one point there was a long slow uphill section over one of the Tyne Bridges. This was a swing bridge which meant in the middle was a gap of about 3 inches I the road. I stopped really abruptly and looked at this was a few seconds. It looked a bit too big to roll over without getting stuck, and I was tired so didn't feel I could 'jump' over it either. In these cases I tend to turn round and reverse over, big wheels first, which is what I did in this case. Justa t the end there was a sharp uphill bit and I just said 'bollocks to this' to myself as it was that bit too steep and I didn't think Iwas going to make it. Anyway a guy comes up behind me and shouts did I want a hand? That was really nice and he gave me a push for about 30 yards or so. Whew made it!
It was a really scorching day and I'm glad I did it early in the day. It was fun, I enjoyed it, I raised some decent funds for a worthy cause and proved to myself I can still be part of things like this.

The Things People Say!

Suddenly I find people say the strangest things to me or worse still, about me. I think they are trying to be nice and also its a generational thing but to be honest they leave me pretty speechless......

• 'You're very brave'...Bleeeeeugh!!!!
• 'You look well'....I shouldnt?
• 'Its good to see you out'....Out?..Out of where?

Then there is the undying admiration thing.

This week I was sitting outside a well known coffee shop in Carlisle with my mum. We had ordered and I said, 'I just need to pop to the bank, be 5 mins' and off I scooted. When I came back she told me the 2 elderly ladies next to us had said to her 'Doesnt she cope well....?' Yikes there's no escape is there?