Id like...........

I woke up the other morning and lay in bed staring at the ceiling. I usually have to think about getting up as it takes a lot of effort one way or another at the moment. I just thought I wish I could wake up and be pain free for a few hours. You know, just sort of jump out of bed and not experience all the usual discomfort. Id like a few hours without the 'drill in your backside' feeling because Ive forgotten what its like, to be pain free, and that in itself is quite sad.

Trying to get things done.

Do you ever have times when you are dealing with an organisation with a simple request and no one seems to be awake enough to help you out? For the last 2 weeks Ive been trying to order some push handles for my Tilite. Not rocket science or brain surgery, Oh no, So.... how hard can this be?

I sent an email to Tilite in the US who told me to contact Gerald Simmons in Aylesbury who is their dealer here. So I phoned them and explained what I wanted. But I needed the chair serial number, had to go and find it and called back 2 days later. No answer so I left a message, but no one called me back. Eventually I called them again to find that the first guy was on holiday, so I spoke to someone else. Gave her the serial number, she went off and then called me back to say she didn't have a record of the number. That's because I got the chair from the US, but she never asked me. Anyway does it matter, I mean I want a standard bit of slot in equipment here, its off the shelf stuff, not something that someone has to go off and make for goodness sake. Meanwhile Ive e mailed Tilite again as I guess Gerald Simmons will have to get them from the US anyway, so I might as well go direct. ARGHHHH!!! Don't you just hate this sort of thing? I just want some push handles BEFORE the baby arrives and not 6 months afterwards. Customer service, what, where?!!!

Going down to Liverpool

Lets have a day out in Liverpool said my husband. Hes Liverpudlian so the pull is strong, he needs that regular fix of the Mersey, Liver Building and Scouse accents. Sounds good to me, I like going to Liverpool , its transformation over the last decade has been fantastic, and there are still lots of things I haven't been to, or explored.

So we took a swift drive down the M6. Now, I have this rather bad driving habit that I must try to stop in that I jam my foot on the accelerator at the right speed on motorway journeys and just bounce down the M6. It works quite well usually as there is very little in the way of traffic, and if I'm going north on the M74 its even better. I was rather absentmindedly flying along when at Preston, the cars started to bunch together, meaning I needed to break quite quickly, The thing is Id forgotten how to do it, for a second my mind was a blank and I thought Id use my foot as Id forgotten I just don't drive that way anymore! So I thought in my head it was going to happen but of course it didn't, so for a split second my stomach churned before I braked with the hand controls. Bad bad habit, I must try to stop doing this when going a long way.

Anyway we headed for the Albert Dock and had a little stroll round. Despite being cobbled throughout its not badly done and most of it is accessible without any help, just take it nice and steady and you wont get your wheels stuck. We had morning coffee in the Tate Gallery and then strolled back to the car. It was a nice day and spring felt as though it had arrived. We headed off to the Bold St area which being on a hill meant I needed more of a hand, but we found a good Chinese restaurant to eat in and stuffed ourselves silly. The highlight of the day was I'm sure a trip to the Disney store which thrilled my son and he bought some Winnie the pooh characters. All in all Liverpool is pretty wheelchair friendly. It helps that with City of Culture 2008 only months away all the buildings are being nicely converted so they are fully accessible. Worth a visit sometime soon Id say.

Crisis what crisis?!!!!

OK, you may have noticed not much in the way of posting here for some days. This is because we are having an ISP crisis at home and our internet connection has been almost catastrophic!

The story being so far....... we live in rural Northumberland in an old property and have used dial up for the last 18 months. We decided like mad fools that we would like broadband, so we looked round for the best deal. I STUPIDLY decided on Tiscali who took our order and told us it would be all done my 14th Feb. Easy so far. By the 13th I realised they hadn't sent the router and stuff so called them on the 0870 number and spoke to someone in India. He couldn't give me any information and told me to call back in a day or 2. I did so, once again calling and calling that damn number to be told nothing. On the 20th Feb I got home to see BT had been to do some work on the line but no one had told us so we weren't in. I called BT, went round 100 menus to find out that I would have to talk to Tiscali as BT had the order from them not me. To add insult to injury I then got an e mail from Tiscali to say my broadband was up and running and the equipment arrived. I rang Tiscali in India to be told It WAS working and to try it. I was very sceptical but I had a go at installing the equipment, but you guessed it, it didn't work, because I knew the work on my line hadn't been done. Still with me?! Now by installing the Tiscali software all my previous settings were lost so we had no connection at all not even dial up. I then spent an hour on the phone telling Tiscali it didn't work before they would get the message, then spoke to BT again, until I got to the point of a head ache and sore ear and lost the will to live. Ive racked up a huge bill on the 0870 number and have no broadband. We had 2 days without any internet, had to get a new installation disk so I could get PAYG and then reinstall my previous settings. At the moment its still unresolved. I have no service from Tiscali and have run out of people to speak to. Anyone any ideas?!!!!!!!!!!!!

These shoes were made for walking...............

Ive been looking at my feet, as you do.... and I think I need to see a chiropodist. How strange is that? I mean I just don't do walking anymore and yet I think Ive got a corn. Before you tell me my shoes are too tight I'm always really careful with my choice of footwear and make sure constantly that they are nice and roomy. However corns are caused by pressure, so where's it coming from?

Having thought about it I think it might be of my own making in that I have a tendency to sit with one foot on its side, so I suppose this exerts more pressure than keeping my soles flat. I must try hard not to do this in the future I guess. But meanwhile on the other foot, my nails are looking decidedly yukky, and that's putting it nicely. Ive always had such delicate little feet but no, old age creeps up and my feet have gone to pot! The main problem on this foot is that I'm sure I'm scrunching up my toes inside my shoes, but the thing is I cant tell, and even if I could I don't know how I could stop it. So unless anyone has any suggestions I'm going to get old ladies feet before my time!

I did think about posting a photo, but no, I decided no one deserves to see this but me and my nearest and dearest!

Discrimination, Just One Example.

We live in times whereby we assume that discrimination never happens because of disability, but of course that's just not the case. Its easy to think that because it doesn't happen to you, it doesn't happen to anyone.

My husband runs groups within the NHS for people with various long term conditions. He was telling me this week bout one of his clients who has CP, cerebral palsy. She had been relating an incident that happened only last year and just makes me want to raise my eyes to the heavens and either laugh manically or cry hysterically. She was at a local swimming baths with her mother and despite having CP is a good swimmer. She was doing lengths of the baths quite efficiently when her mother was told (not her obviously as no one wants to speak to a disabled person do they?) that she would have to get out as she was a hazard in the water and was distracting other swimmers. Like I said she's a pretty decent swimmer. Anyway after some negotiation she was allowed to stay in the pool as long as she only did widths! I'm sure the pool would argue health and safety as its a very good way of getting out of doing anything so it seems to me, but they weren't asking other swimmers to do widths were they regardless of their ability?

The sad part for me seems to be that she sort of accepted it with a shrug as I guess she has had to put up with this for all her 30 years or so. But I do think we can have all the disability equality schemes we want, its going to take a long time for perceptions to really change within society.

Meez

This amused me yesterday for 2 hours, try out Meez.com where you can build little cartoon versions of yourself. Especially good of course when you have absolutely nothing better to do with your time!!!

Anyway I'm making a serious point here in that I think it goes to show how my mental image of myself has changed. A year ago Id have rather had my toe nails pulled out(!) than build a mini-me that looks like this. Now a year on and I'm pretty cool about it. In fact its the thing that comes naturally and Id be amazed if Id done a standing version of myself actually. I have to admit I'm always surprised at how the mind works, you don't even realise it.

NB. NOTE TO MEEZ...... SOME OF US WERE SPECTACLES YOU KNOW, WHERES THE OPTION FOR THIS!!!!?

Hardware Failure!

I was getting a couple of essential items today in that very well known supermarket, the one that's on the edge of world domination, when oh dear I had a bout of hardware failure. It was sort of my fault but I was leaning forward to get something and as a result of this was pressing down hard on my knees when my foot plate gave way! Like I said it was sort of my fault because Ive been fiddling about and changing the way its set up, and obviously I hadn't tightened the whole thing up hard enough. I'm used to a solid foot rest taking all my weight so this came as a bit of a surprise, and very awkward it was too. I couldn't lean forward enough to pull it back up so had to make my way slowly and gingerly out of the store and back to the car. I really really didn't want the whole thing scraping along the ground, but you know how you sometimes see a car slowly driving along with its exhaust hanging off? Well it was a bit like that. So I got back to the car, cursed quite a lot and decided Id have to head home to do some repairs as I don't routinely carry Allen keys and screwdrivers in my bag. Hmmm perhaps I should eh?

Bite the Bullet

Today I decided it was no good, I have to bite the bullet and order some push handles for my chair. I have to admit that the pregnancy is progressing well but Ive got to the point where I need a hand more often, most likely coming from my long suffering husband. So for him only I'll put some handles on my chair temporarily, for a while, while I have to. As you can guess this has taken quite a bit of persuading on his part and while I know logically he is quite right, I'm not sure in my own heart that I'm not giving in just little bit. Having said that, this is the woman who cant get her shoes on anymore so I'm starting to get a bit pathetic generally. The bump is in the way so I cant get my leg up, and my back hurts too much to lean any further forward, so its all a bit hopeless! As he said this morning, it wont be long before he's having to get 4 of us dressed!! Harrumph!!!! You can tell how taken I am with this suggestion!

So that was the first start to the day, then I had a crown fitted at the dentist and then for good measure I had my catheter removed this afternoon. Now I can pee myself at leisure. Yes I'm thrilled at this as well. I seem to have an attack of the grumpy old women's about me today, but I suppose its more a symptom of getting things done and also perhaps stuff being slightly out of my control.

Anyway going back to the issue of handles for my chair, why is everything so bloody expensive for wheelchairs? I mean I'm talking megabucks here for 2 bits of tubing? I know manufacturers would argue that this is specialist equipment and of course they are right to a point, BUT at the end of the day arent we the group of people who are most likely to be unemployed and at the poorer end of society in general? I mean, you don't find a rich crip very often do you? So do I feel just a tad ripped off, yes of course I do, and don't you just hate that feeling of paying through the nose when you just know its not worth it?

Les Bobos!

At midnight last night I found myself driving to Carlisle and back for no particular reason. Well I suppose that black dog was sitting on my shoulders and I needed to shake him well off before I went to bed, otherwise he's in danger of taking up residence at the moment. Its not surprising that I'm feeling down in my mood. I'm very very tired, getting little in the way of sleep, Ive had a cough that has haunted me for months and at the moment I sound like a seal. It should be funny but Ive lost my sense of humour, it all seems dark and bleak and the weather is too wet for anything and the winter has gone on since September.

So times like these mean I like to take a drive, so with a full tank of petrol and a cheerful CD off I went for an hour. One of my most sing along cheerful songs at the moment is something called Les Bobos, by the french singer Renaud. I simply love this song and play it over and over again, LOUD is the best volume setting. I like it for several reasons, its a good rollicking song, great orchestration and most of all it challenges my french which is useful for taking your mind off things. Its about a class of people in France called Les Bobos or les bourgeois-bohêmes, not sure if there is an English equivalent but these people live in a good district of Paris, drive 4x4s, shop in Diesel and admire Sarkozy according to the song.

Well you get the gist anyway! My husband informs me only half in jest that we are the rural equivalent... Hmmm not sure how I should take this. Being a Crip might in fact disqualify me anyhow. But the nature of the song really makes me listen hard so I don't miss anything, so its a great mental distraction for a crap day is what I'm trying to say amongst all the waffle. Ive listened to it for most of today and it has worked, I do feel more cheerful than yesterday!

Not my Day

Speaking of catching those Zzzzzzzzzz's I should have stayed in bed today. You know how some days you realise its just not your day? Well today has been a bit of one of those.

Firstly I fell over while transferring into the car. Its slippy outside from all the snow and rain we've had over the last few days and I suppose it was just fate. Whoops over I flew, landed on my back, and lay there arms outstretched staring at the sky. The worst bit being that I caught my knee on the underside of the car and yanked my kneecap up. OMG how much did that hurt?!!!! As Ive said before I have very sensitive knees (Odd I know!) so I lay on my back with tears streaming down my face with the sudden pain, my head in a patch of nettles and my backside covered in mud! After a few minutes this gave way to general hysteria as I laughed and cried at the same time. Believe me you don't know what to do first on occasions like this!!! My knee looks red, and purply bruised but I don't think there is any lasting damage done.

A couple of hours later I was coming home and thought that my mouth felt funny. Within a second or 2 I realised that my temporary crown was just that, very temporary, and had detached itself from my tooth and was rattling around. I have now a very large, rather sensitive hole, and I have to wait til Friday to have it finished off. Like I said, not my day was it!?

A Quiet Week

Its been a quiet old week with nothing to report. Ive been unwell and spent as much time in doors and if possible in bed snoozing. Despite nearly being admitted to hospital I can now say that Im on the mend if slowly, but am still trying to catch as many Zzzzzzzzzzzzz's as possible.

Rooted to the spot.

However going on from that I seem to be losing my 'walking' ability. I use the term loosely, as walking for me tends to mean a stagger to the left and a lurch to the right, its not that much, I can usually string a few lurches together but nothing momentous. What I do is stand up and make sure I'm in one place OK and then I sort of have to think about taking a step for a few seconds. Sounds a bit weird but its a conscious thing in that's what I'm going to do and hve to strt sending the signal on its wayfrom brain to legs asap! So I decided I need to take a couple of steps to reach something and went to go that way, but found that I was pretty much stuck to the floor with super glue! Feet were not responding to the order which left me toppling forward as my top half thought it was going somewhere. So I grabbed to first thing that came to hand which was the cooker. This wasnt a great idea as it started to come with me in slow motion, "Oh no I'm going to be squashed by an electric cooker" I thought, let go and plopped back into my chair. Whew!!! A bit of a close call there!

Fingers crossed this is a pregnancy quirk, just as a lot of recent things have been, I'm hoping none of it is permanent after the birth of Hersh minimus, but Im expecting the worst because you just never know do you?

You have Carte Blanche.....

......to say anything you like to me as I'm disabled!! Ive mentioned this before, and by now I should have a few sharp comebacks but you know I still don't have anything funny to say. We had some friends of my husbands come over last weekend and I'm saying right now, they seem very nice. But its funny how people make immediate judgements about you as soon as they meet you, and its probably more true when you are sitting in a chair when you first meet someone.

Oh you have stairs? is the first thing. This translates as, why are you siting there when you have stairs to climb? Well you know its funny, if you live in a house you do tend to find stairs. The thing with spinal injury is that's its so different from person to person you just cant make a generalisation. I don't find going up our stairs too bad most of the time, but I wont get across a fairly small room without toppling over to one side usually! We have 2 short flights of very shallow stairs, so by holding on carefully I can do an upward leg action of a couple of inches and go up nice and slowly, after all there is no rush, and I'm practiced at them. I have to say the majority of stairs are pretty impossible, but these are something like the baby equivalent of 'My first stairs' and would rate easy for a 1 year old!

Coming down isn't so good, I have nearly slipped and fell a few times so now I tend to do the bum method, we do after all develop certain ways of doing things that to an outsider seems odd.

So is your bedroom downstairs? Isn't this a bit personal? No my bedroom is upstairs because I choose to have it there at the moment. I will do these few stairs while I can and when I cant we will review it. My husband did offer to put our room downstairs but I'm striving for some normality where possible so not yet, call me stubborn, but I like to know I can do it no matter how long it takes!

My House

Hmmmmm this blog is looking a bit miserable, so we need a picture or 2. Anyway not sure if Ive done this before but here's a photo of our house in the spring, to remind us that hopefully its not too far off. Its only of the main building because we have attached on the right hand side a couple of storerooms, and then across from the main a couple of out houses which I don't frequent. Over all its fairly user friendly in that because of its age everything is done on a low scale. Yes we do have stairs but they are few and shallow, the ceilings are low, meaning I can help with decorating and the gardens not overly enormous or high maintenance. The only thing Id like to change is the entrance. We currently have 3 low steps to get up which sounds a lot, but when I'm fit and able isn't too bad. But really Id like to ramp it all just to make life that bit easier. The main problem is apart from cost is that I'm likely to need planning permission and Tynedale, being the draconian council they are, they who never ever give planning permission for anything unless its in Hexham are very likely to say no. So I think its a battle I might put off til next year.

Feeling Crap!

OK, the reason I haven't posted much over the last few days is that I'm feeling utterly awful!!! I don't really want to go on a huge moan, because if I do you'll stop reading, but take it from me, things are not all great with me in the physical world. As if to prove the point its now 5.30 am, Ive been up and hour and a half and had about 4 hours sleep. looking back there is a pattern to this over the last 4 months. I get this terrible cough during the first week of the month and as I'm getting bigger and more pregnant so it gets worse each month. So Ive decided to apply for a care assessment from social services as I really do need some caring for. I'm a very stubborn person which has kept me going for sometime now, but I'm admitting defeat. My husband with the best will in the world cannot be the all singing, smiling, caring, wonderfu,l fantastic, superdad and husband all the time, its not possible. So we shall see what we shall see, if I don't get it at least I will have tried.

Ending up in a wheelchair.......

I was reading an interesting article in this weeks Jewish Chronicle, written by a guy who got a brain injury last year while visiting Romania. Its a sombre tale of bad luck and misfortune , but ends on a good note as he describes how he is functioning again and getting better every day. The whole experience does sound rather grim to be honest, and he is far from back to his old self, and probably never will be, but we all have our own personal sorrows dont we? Anyway the last sentence he wrote that he was lucky because he could have ended up in a wheelchair for the rest of his life.......

I read and reread this sentence a couple of times and then started to get that prickly feeling of irritation. I mean why do people judge that using a wheelchair is the worst possible thing that can happen to anyone? Id have thought that lack of legs was far preferable to a brain injury but who am I to say? Frankly its not the worst thing that could have happened to me or to lots of people I know but sadly society seems to think it is, so we spend our lives being seen as being brave, or stoic, or marvelous or anything else you'd care to mention. Take it from me, wheelchair use is not the worse thing that can happen to you in life but Im sure that losing the essence that is you could be.