Pimp my Ride.

Santa, being the kind soul he is, bought me a new wheelchair. Or rather he has ordered one for me. Funny isn't it, a few years ago it wouldn't have entered my mind, but now I'm excited by it! You see its not just any old chair, oh no, generosity knows no bounds as I'm expecting a TiLite XC to drop through my door. Well I suppose the door isn't going to stand up to that, but at some point in the not too distant future, it will arrive. In order to save a considerable amount of money we have ordered from the US, as titanium chairs don't come cheap, around the £2000 mark in this country. Ive also ordered some accessories such as blue tyres, just to add a little something to it. Now should I go for spoke guards, what do you think? Apart from looking nice, I have a very bad habit of getting my fingers stuck in my spokes which at speed is agony!!!

The XC is a folding chair. You've read my posts before and will know its something Ive been thinking about for ages, and Christmas proved the point. My fixed frame RGK took up the WHOLE of the boot area, so once we have 2 children its going to be cumbersome and the XC folds up to a width of 19 inches so I'm told. Folding frames are generally pretty reviled, mostly because they are not so strong and sturdy and the X frame adds additional weight. I cant comment as Ive never really used one so it remains to be seen.... So here's a picture for you to feast your eyes on, remember I'm getting the blue tyres. How cool is this eh?

Thunder Thighs!!

As a child I had to put up with pretty unpleasant teasing because I had the misfortune to have fat legs. This continued right through my teenage years and it pretty much put a stop to me wearing anything remotely short.

Now if you think about all these disabled men you see scooting around in wheelchairs, they nearly always have thin or even skinny legs don't they, so you'd think there might be some hope for me!? This could be my chance in life to wear some nice tight jeans and show of my wonderful shapely legs. Hmmmm... no such luck.... I'm pretty sure this is because women have a different fat distribution than men. See, I still have nice fat thighs and a big bum.... the muscle may be going but the fat remains. My calve muscles are slowly diminishing, but my thighs?... not much, a bit, but my dreams of shapely legs are still that, a vague dream. As for my bum, well once again the female form wins. I know the muscle on my backside is going as I can feel the bone if I sit on something vaguely hard , but please forget any notions of a nice shapely bum. Its still fat!!! Harrumph!!! Just no justice is there?... and this my one chance to wear all those clothes Ive always wanted to!!!!!!

What a difference a year makes.

This time last year I was not well. Not well physically, mentally or spiritually. In fact the whole of last December was pretty grim, culminating in me spending Christmas day in bed. Physically I was suffering a lot of pain, and couldn't sleep because of it, my bladder had almost stopped working and I felt like Id been kicked within an inch of my life. Mentally I was depressed, I remember crying bitterly at my doctors and being sent home with Amytryptiline and Prozac. I felt terribly self conscious wherever I went and couldn't bare to see myself in shop windows. A year on and life is better. I'm better in all ways, and while I would probably say there is a way to go, I can for the first time in a long time see that shining light ahead that says things will improve. I hope so because I think its been a long journey so far, and a hard one at that. I remember bumping into some old family friends a couple of days before Christmas last year, they have known me since I was a toddler so no escape. Boy, they were shocked to see me, and then said 'oh well, you'll soon be up and out of that' meaning my chair, 'Actually this is probably as good as it gets' was my reply. Stunned silence followed and I wanted the ground to swallow me up there and then. Now though, I can cope with these sort of things better. While its never easy, I'm more used to me and happier in my own skin. As Ive said before if I'm having a hard time I try to think that if I can make it to tomorrow and then tomorrow and then tomorrow, before you know it a week has gone by and the hard time fades into the distance. Life is good for most of us most of the time, certainly if you are reading this, but we don't usually know what we have. I'm looking forward to the next year, and while I know that there be some difficult times ahead, none of them will last for that long.

Electric chairs

One thing that that drives me utterly MAD is well meaning relatives asking me 'Why don't you get an electric chair, it would be much easier?' This usually happens once they have come back from a 3 week Mediterranean cruise and spotted some elderly person zipping around the ship. Invariably I'm also grunting and grumbling at the time as I'm pushing myself up some sort of slope, which rather adds insult to injury. Trouble is I don't really have a nice sharp answer. The simple reason is I suppose is that I just don't need it. I'm otherwise fit and healthy, go to the gym, have a good lung capacity and strong shoulders. Another reason is that they are bloody expensive too. And heavy. How would I get it out the car for instance? I mean you'd have to have one of those hoists. It does open up a whole can of worms actually, although people don't realise it.

I am however in the market for a new wheelchair. From a practical point of view I'm looking for something that will fold, as once Hersh minimus arrives, we will have me, hubby, Hersh minor, Hersh minimus, 2 dogs and a rigid frame wheelchair in the car. But folding wheelchairs usually look like the ones you see old ladies being pushed around in Tesco, great big heavy things, no use to anyone. Infact I would go as far as to say they are 'Trolskys'. ( ask me about that one!!) No, what I want is a Quickie Revolution, a Kuschall Champion or a Tilite. Anyone got one out there they want to give me??!!!!!!!!!!!!

Home for Christmas

For Christmas we are spending time with my mum, in the Midlands Metropolis of Bedworth. It will be nice I have to admit, but there are too many chances that I'm going to meet someone I know, or rather used to know for my liking. If we go out somewhere I tend to suggest that we go slightly further afield than normal so as to avoid having to chat and make small talk. The main problem is that my mother is universally known in her district, so no matter where we go you can place a safe bet that she will bump into people she knows and then introduce me. I just sit there squirming and trying to look nonchalant while she chats, and eventually roll off round a corner and out of sight. I'm painfully aware that people tend to be a bit surprised to see me to put it mildly, and that's just the ones Ive never met before. If its someone Ive known before I find it even worse. It may be that I need to don some sort of disguise, I don't know, big hat, false beard, etc? No perhaps not. I could just sit in the house and hide, but at the end of the day I just have to take a deep breath, smile and be brave!!

Rude or What?

I was in Asda with my husband this week just grabbing a bite to eat at lunchtime. No fear not Readers, we weren't actually shopping there.... but being in the vicinity it was cheap and cheerful, which is what I like!! Now the cafe in Asda isn't the most wheelchair friendly, but its OK I suppose. The seating is arranged in 2 separate aisles with tables and chairs on either side. Because the tables are quite close I cant actually remove the chair and sit there, so I have to sit in the aisle way. Its not too bad, I mean there is enough space to walk around me easily enough, and it wont cause any problems with me being there for half an hour or so.

Anyway I was tucking into my sandwich and tea, when this elderly man appeared, quite well dressed, pushing one of the large trolleys which was empty. He came down the aisle, looked at me and proceeded to bash into my wheels. Now I don't mean he clipped them, no he just rammed into the side, in his attempt to force his way past me. Wouldn't want to be in a car with him huh? Anyway I looked at him and said loudly. I'm sorry I cant move, as it was I was squashed as far as possible against the table. Not once did he look at me, speak to me, or even acknowledge me, he didn't apologise or even ask me if I could move. He eventually backed up and grumbled about having to leave his empty trolley at the top of the aisle.

See how polite I am, really I should have said, "what the f*** are you doing?!!"as he chit me with some force. Unbelievable isnt it? If I hadn't been so surprised Id have said something. And they say the younger generation is rude!!?

Johnny No-Mates

That's me, Johnny No- Mates. You see sadly I have no friends. Really I don't think I have anyone I could call for a chat, or go for a coffee, see something new, or just do the sort of things friends do. OK perhaps I should add, I do have a few friends but they all live hundreds of miles away, which on a daily basis isn't very useful. We don't have any family nearby either, so we are pretty much on our own. Ive tried really hard to get to know people but it never seems to come off. I think I'm alright, I'm quite funny, can hold a decent conversation, am interested in all sorts of things and usually pretty kind and understanding, so you'd think loads of people would be dying to be my friend, to enjoy my company. But no it doesn't happen. No one ever calls me, or invites me anywhere or anything like that. I'm not thinking of a daily basis here, but not even on a monthly basis.

However what I do have is lots and lots of people admiring me. Let me tell you now I'm so admired its not true. Its the one word people use all the time when talking to me and about me to others. Every member of the family admires me, some are proud of me and many are in awe. I'm reminded constantly or their admiration, I'm so admired that I think Id have given the Queen Mother a run for her money, being the gambling woman she was. So as I'm so admired I don't have any need for friends do I?

That's what the world seems to think. I'm on this bloody pedestal of admiration when all I want to do is something simple like have a decent coffee, a chat, eat cake, go for a walk, see a bit of scenery and if I'm really pushing it Id like to go to a concert of some kind. I spend most of my time by myself, in my own company, ( apart from my husband), trundling around on my own. I would love to have a really good laugh about something with a friend, to ask someone how they are, listen to a problem, give some advice. That's what friends do isn't it?

Although I'm trying not to feel persecuted I do suspect people only see my chair, and not the real me. I cant spontaneously pop round peoples houses, I have to check for access whenever I go somewhere, I feel people either think I have no brain anymore, or that I'm some sort of strident intellectual professional disabled person, or I can be patronised a bit. I'm not normal, and people dont know how to behave or act. Meanwhile I'm the loneliest person in the north tonight.

Stem Cell Research

So I watched that TV programme on Thursday night and it seemed to be 2 programmes stuck together which was a bit of a shame. Obviously the BBC thought they could make one programme out of 2 different issues. But hey its all about disability right, so that's all the same isn't it?

The 2nd part of the programme dealt mostly with 2 women on the quest for a cure for their paralysis, one with MS, the other SCI. I watched with a slightly queasy feeling, as TV is very keen to show peoples 'quest' for a cure, rather than make a programme with someone coming to terms and getting on with their lives. As stem cell therapy is not allowed in this country, these 2 woman had to spend large amounts of cash going to the Netherlands for treatment. Call me a cynic but is this a golden cow for some unscrupulous people? Where is the evidence that it works? Who says it works and if it does, how come we arnt all getting this treatment? My husband, ever the one for sharp words always says to people 'If there was a cure for this, Christopher Reeve would be alive and ice skating!!', that certainly shuts those up who keep saying, 'Cant they do something?'.

I'm not a total non believer though, I really think there is great potential for quality research and also the development of treatment with stem cells, but I also think its a long way off yet, and that it will be many years before something is found that provides effective. As for a cure? A cure, a real cure? I don't know really I don't, it seems to be a bit too much to ask in my opinion, but I know I'm just a sceptic at heart, right?

Carpet

If I was Philip Green or Stuart Rose, I don't think Id choose to put carpet on the floors of my high street stores, after all I cant imagine that its very robust with 1000's of feet tramping over it every day. In fact the state of the BHS carpet in Carlisle is a testament to this. But for some reason they still use it, probably thinking it gives the store a warm homely feel. For the wheelchair user though its practically hell. On first glance, store carpet looks pretty thin. After all I have carpet in some of my rooms at home and don't find it particularly hard going. But I suspect they use a 4 inch underlay or something as you immediately sink in. The other day I was out and about and could pretty much feel my shoulders grinding at all the effort I was putting in.

The worst offender at the moment is Waterstones (Ottakars) in Carlisle. The thing with this shop is oddly enough half the store is on a slope, so as you go in, not only do you have to push through the carpet but the slope too.

So Message to all those large corporations out there.... STOP PUTTING CARPET IN YOUR SHOPS!!

Bags More

A day on and I'm feeling reflective. I don't know what I think about this really I don't. Maybe its a bit drastic, I don't know, but thinking over the last few months it was probably necessary action.

It seems odd to wake up with a large bag hanging just under your bed. Slightly unreal actually. I mean isn't this sort of thing for really disabled people? I was worried Id turn over too hard in the night and yank the thing out. Of course nothing dramatic happened as I don't really move about that much when I'm sleeping these days anyway. When you think about having a bag, if you think too hard you feel pretty horrified, after all isn't this sort of thing just about everyones worst nightmare? Well it seems to be happening to me, and I wouldn't say its a nightmare, more an experience perhaps?

Today was a day for pottering about. I sat on the bed and read all the literature I was given, and then a box of equipment arrived from Charter. Only ordered yesterday as well. So I went through the bits and pieces and tried some things, left others. Ive used a few bags today as being a bit 'scientific' Ive been trying to see how it all works. Mad huh?! Ive also tried some of the day with a bag, and some without. At the moment I think I'm feeling just that bit more comfortable anyway. People think if you have a catheter like this then you feel it all the time. Well its not like that for me as I wouldn't be able to feel it anyway. I know its there, I'm aware of it and the bag, but I don't think I can feel it.

Foley

Despite feeling retched, I managed to drag myself to see my urologist today as I really hate missing her appointments, and I came home with you guessed it....a Foley catheter! She has been umming and ah-ing about this for a while now as she has been trying really hard to keep any kind of intervention to a minimum at the moment. Anyway, I'm not sure its one of those highlights of life for me, but when all is said and done, as my bladder has developed a life of its own recently, the pros out weigh the cons more or less. I'm fairly sanguine about it as I try to see most things as part of life's adventure I suppose.
Anyway its a straightforward procedure whereby I lie back, look at the ceiling and make witty conversation! As I said to the nurse you never think you're going to develop an interest in catheters but here we are! After about half an hour of tutoring, mostly about bags, what to do with them, where to put them, how to attach them and so on I left with a good supply to keep me going until my own ones arrive, some elasticated thingies to make sure they keep attached and a plastic hanger so I can sort it out at bedtime without problems. I also have a good supply of antibiotics as well to keep nasties away.

This is supposed to be a temporary measure, mostly to give me a bit of a break from the hassle of Intermittent catheters, and will have to be removed before the end of the pregnancy. When the baby gets bigger it pushes on the bladder and can cause damage and bleeding. Unfortunately for me I'm not the straightforward case, typical isnt it? Ive had over the last 8 months in particular every bladder difficulty you could imagine, and 3 ways of going for a pee, so I'm at the point of not caring anymore one way or another. When you are pregnant no one wants to do anything, which I understand, but it means you have to do things you wouldnt normally do, however if it makes life easier for me then fine.

Couple of things I have to do in particular is try not to use a bag in the day if I can help it. This means I have a valve at the end of the catheter and use it the same way I would as an intermittent catheter. This is to stop your bladder shrinking apparently. However if I continue to experience something called strangulation then I can use a bag all the time. See, I thought this would be easy but already there are buts!! Strangulation is something I have every time I empty. If you imagine a balloon full of air, that's your bladder, and then suck all the air out, eventually the rubber of the balloon sticks together as all the air has totally gone. This is what happens to my bladder and it hurts. A lot. The other thing to consider is that I'm still likely to have a low grade bladder infection which gives me extremely painful symptoms because I'm actively emptying. By using a bag then this means the process becomes more passive so in theory pain free. Still, I have to try it without bag first, but it will be interesting to see how it works at night time and if I see any noticeable difference.

So anyway this is pretty much being reviewed on a weekly basis, As for me I'm just sick of the whole thing and hope that for at least a few months it will all happen as it should, and I can forget about it. Now I was thinking of adding an illustration here, but having had a good look around I didn't really want to give an anatomy lesson, interesting as it is, so here is an photo of someone to show the sort of thing I'm talking about. No its not me,... As If huh?!!!

Flu

I'm just getting over having Flu. And no before you sceptically roll your eyes this wasn't a cold, but the real awful thing. It came on at the w/e very suddenly, one minute I was having breakfast and the next I was saying to my hubby. ' I think I'm going to have to lie down a bit'. Well that was that for several days because once I was down I certainly couldn't get up again. This is the first time Ive had this with SCI and I hope it will be the last for a very long time indeed. First thing was the pain, utterly unbearable, I think every neuron in my body was firing off and around my lower back area, let me tell you, its no exaggeration on my part to say that giving birth is easier. The pain was excruciating and I couldnt bear to lie on my back for nearly 3 days. I'm pretty sure,... hmmm... let me cast my mind back to those heady days of microbiology lectures, doesn't the flu virus attack nerve endings, hence the amount of pain? Well something like that anyway!

The next thing is that apart from being very very hot, and then freezing cold, I was unable to take care of any of my bodily functions, so my husband had to do everything for me. Normally I would have a complete fit at this sort of thing, but frankly I felt so unwell who cares? So he should be acknowledged for being a super husband and dad. The other thing is I couldn't move. I went from 'incomplete' to complete' very quickly and found that my paralysis increased as a consequence of this virus. Like I said its not something Ive experienced before, but not only my lower body , but also my upper extremities were affected for a few days. So I spent about 3 days chewing on paracetamol as its about the only pain killer I can safely take and crying bitterly at feeling so ill, and grovellingly apologising in a half delirious manner to my poor husband.

I'm up and slowly pottering about right now. I still have glands like golf balls, razor blade throat, have a lot of lower back pain, and from that point of view am still feeling (or not as the case may be) 'complete' in terms of spinal cord injury. I suppose these things takes some weeks to recover from so at least I should have got it over for Christmas this year.

Would You, Should You?

There is what looks like an interesting programme on BBC2 this coming Thursday about a guy who is offered stem cell treatment so that after 20 years of paralysis he will possibly walk again. Apparently he decides not to do it. So I wonder would I? And I conclude even after a short space of time I don't think I would. Well it depends on whats on offer but personally I want it all or nothing. Its not enough for me to wobble around unsteadily on crutches, 'walking'. No what I want to do is run so hard I get the stitch, walk barefoot on a beach going ouch ouch as you hop over broken shells, stand with my feet in the sea sinking into the sand and the water lapping over them, I want to be able to go out all day and not feel I need to sit down once, and yes walk Hadrian's wall. So unless they can offer this to me then I'm not interested. Wobbling around on crutches with that sinking feeling that you are going to fall over any minute isn't walking and means you become less mobile not more. But hey, that's just my opinion for what its worth.

Disability Equality Scheme

Over the last week Ive been busting a gut to get an Action Plan and Draft Scheme written so it can go to the full Council in 10 days time. The Disability Equality Scheme is something that all public bodies should have in place to positively promote the welfare of disabled people. Part of it says we should actively consult with disabled people on this so we know what they want. Trouble is, we haven't. There are 2 reasons for this, the first being that the council in their wisdom forgot about it and then suddenly realised they needed to get it done, and secondly because I work for the least sparsely populated district in England, and its bloody hard to find anyone who admits to being disabled let alone get them to come and consult. Even a good lunch fails to entice. So Ive been consulting with myself and writing what seems to be a very large policy document in the process. You know when you feel as if your brain is going to explode? Well that's how Ive felt all week, so much information in such a small space, Ive had a permanent headache for days........ or is my bladder just full?!! No I'm pretty sure its been caused by too much thinking.

Anyway I got my report in bang on midday which was the deadline,.. I always meet deadlines, she says smugly, and it looks like this is going to rattle on well into the new year. So if you are disabled, a bit disabled, know someone who is, or might be,or perhaps you have a disabled pet and live in Cumbria come and consult with me, please, Im desperate to talk to anyone!!!