Friday, December 24, 2010
Thursday, December 23, 2010
Now, I'm sure that you are wondering just what on earth I am going on about (no change there then), as most people aren't actually too happy having cold anything, and that includes fingers. Me, I'm happy, because I have Raynaud's disease (also called Raynaud's syndrome). Now again, I guess there are people out there who are wondering if I've lost my marbles as plainly Raynaud's is no fun at all but don't worry, I'll get to that...in time!
Around 3 years ago (or maybe even more), I started to have problems with my hands in the cold. My fingers would go absolutely white - nails and all and they really looked odd - kind of like some of the victims' skin in episodes of CSI. This is a not good look - especially when it's your own fingers. This could happen to one finger, many fingers, or just part of a finger - there never seemed to be any rhyme or reason to it and it just looks really, really odd.
For sure, cold triggered it, but for me, rapid changes in temperature are much more important and touching cold wet metal is just the worst thing in the world. That means pushing a wheelchair in the rain without gloves is definitely not recommended! Of course, gloves are the first thing that people talk about with Raynaud's and many folks are very ready with advice - usually based around their own experiences. I've actually had quite a few women say to me that they too have Raynaud's - "Oh yes, I have very cold hands you know, I always wear gloves /feel cold etc etc", but it's hard to get across to them that it's not just cold hands. Those white fingers have no blood in them - yes, that's right, no blood - that's why they're white - it's because the blood vessels supplying them shut down. When I first heard that, I couldn't bring myself to believe it and so stuck a pin in my own white finger - well, guess what, it didn't bleed at all! What's even more freaky, is that about 20 minutes later when my finger turned blue and then red as the blood came back, it started bleeding then. The red and blue stage is really painful too - simple cold hands are a doddle to cope with by comparison.
This started out as an occasional problem, but over time, gradually got worse. I reached the point where I could be somewhere hot but going into air conditioning would trigger it; I couldn't take food out of the freezer without wearing oven gloves; walking in between the chiller cabinets in the supermarket was torture; peeling the potatoes had to be done under a running warm tap and I dreaded those summer showers which drop the ambient air temperature by a degree or so. In the end, I went to see my doctor as it was just affecting my quality of life so much...you just don't realise how wearing it can be when it's such a year round problem - you can't wear gloves all year round, just in case, after all.
Anyway, my doctor was really helpful and suggested medication - a drug called niphedipine, but there was a drawback - once I started taking it, I would have to take it forever. It's actually a drug that lowers your blood pressure (not ideal if like me, you have lowish blood pressure to start with) and so I didn't immediately agree to it, but I think there comes a point where you feel you are reaching the end of your tether with something. About 6 months later, after a particularly bad attack, where I lost several fingers for several hours (yes really!), I went back to the doctor and started taking the drugs. I continued to get attacks for a bit, but they got less and less over time, as my body adjusted to the tablets.
All of which, leads me to now. This winter has been the coldest for many years, we've had snow and minus lots in temperature and the cold has gone on day after day after day. There have been days when I've gone out and forgotten my gloves; I've thrown a snowball with my bare hands and I've opened my car door without pulling my sleeve down over my fingers. I've done all of these things without an attack and I can't tell you how good that is. What seems all the more amazing to me is that my hands actually get cold before warming up again. So, I guess that means that studies now apply to me - since I now have cold hands, then I maybe I really do have a warm heart.
One last thing, in case you are wondering about the reason for this post (apart from me being happy!) - it's just that if anyone is out there Googling Raynaud's, then maybe they will come across this post, maybe they will tap on their keyboard with their dead white fingers and just maybe make a note of the drug. Maybe they will go to their doctors and then, just maybe, they will be helped too....That's all...
Thursday, December 16, 2010
You say your bit to them and then ask if they want to say anything to you, or ask any questions and with kids, being kids, there is always a forest of hands that go up. I admit, that I am always delighted when they ask questions about my disability - kids just don't seem to have those adult hang ups and they just come straight out and call a spade a spade. You do get some odd things asked sometimes though - I had one little boy once who asked me how fast I could run - which was sort of strange since I was sat in a wheelchair in front of him. I think he just didn't see the chair at all, he just saw me as an adult, who happened to be sat down.
Some kids put their hands up just to tell you stuff that is completely unrelated to anything that has gone before - things like "my dad is taller than Billy's dad", and you wonder why they choose that moment to tell you...
On this occasion, after a few questions about after-school clubs (one of which is an archery club), a little girl put her hand up and asked very seriously "Van Gogh wasn't a very good archer was he?" I have to be honest, that question kind of threw me rather, but I just had to know more and so (just as seriously), I asked her why she had asked. "Well," she said, "he can't have been very good if he shot his own ear off!" I was still a bit curious (actually a lot curious) and so (trying hard to keep a straight face), I asked her how she thought he could have shot his own ear off. "Well," she said, "Mr Jones said Van Gogh was an archer and he lost his ear, so I think he must have pulled the string on the bow too far back and caught it behind his ear, pulling it off!". "Hmm", I said, "Who is Mr Jones?" - "He's our art teacher", she replied. "Ah!", I said, "Did Mr Jones perhaps say Van Gogh was an artist, not an archer?" The little girl stopped and considered for a bit...."Yes, maybe that was it...but then how did he lose his ear?"
At that another forest of hands went up - all the kids wanted to know the gruesome details of how Van Gogh lost his ear...did he really cut it off? Did he send it to his girlfriend? Was there lots of blood? Has it been pickled for us all to see? Ah, kids, you just never know what they will come up with next...
Saturday, November 20, 2010
My original admission paperwork said I was having a general anaesthetic, but when I got down to theatre the anaesthetist had a quick chat with me, glossing quickly over that option before trying to find out how close to screaming I was, therefore determining whether I needed a sedative. Mind, I don't suppose he had any left from his own personal use - he was one of those tall, thin men, with a long, thin, sad face who really, honestly and truly at one point said to me "It must be wonderful to be so positive!". He was a barrel of laughs, I can tell you, but the more I thought about it, the more I thought it was a good profession for him, as his job was normally spent dealing with people who are asleep!
Anyway, having been sliced in half in the past and at various points in my life been diced and stitched back up, I wasn't really too freaked by the whole operating theatre thing (yawn, been there, done that...) so I didn't have a sedative either and it was done under local. Given that the procedure involves needles and they are (brace yourself here) large(!), you need several more needles to give you an appropriate amount of local anaesthetic. Interestingly the variable sensation on my back made the local injections completely painful or completely painless, depending on where they were sited - my surgeon seemed to think this was some kind of game - "can you feel this? can you feel that?" - which I was hugely amused by - not!
The needle needs to go into your disc space (or in my case the place where my discs should be!), and so placement needs to be precise. Inserting the needle into your spinal cord is not exactly a desirable outcome! To this end, they use x-rays to find out where they need to be - all the staff are there with their lead aprons and shields and there's me, face down on the bed, with my arse hanging out of my gown (quite literally), getting zapped every few seconds. I was too tired last night to see if I was glowing in the dark, but I wouldn't be surprised and I'm sure I will tick very loudly if anyone sticks a Geiger counter next to me for some time to come. To be fair, they do have a special placement tool, to get them more or less in the right area - it's called a coat hanger! Yep, I'm not kidding - it's a metal coat hanger with the hook straightened - they lie it on your back, x-ray you - the coat hanger shows up on the x-ray pointing to the disc space and after they've shuffled it around a bit, they draw around the end with a felt tip pen, and that gives them their insertion point. It's actually really funny to be lying there listening to needle, check, lignocaine, check, coat hanger, check....
I then got to watch the whole thing on the x-Ray screen, like a series of stop motion images and local or no local, that needle hurts like a bugger when it hit the right spot. Personally I feel that the right spot was one that would hurt less, but I am assuming that my surgeon is not simply a sadist who likes to get his pleasure in strange ways and he did assure me that he was doing the right thing! Anyway, I now have an extra layer of 'stuff' in my joints which hopefully will cut down my pain levels and give the treated joints a little more stability. They treated T8/9, and L5/S1 which are quite a way apart and means that most of my back kicked up a fuss...
All of which leads to how I feel today, which is pretty sore...much like I've been hit around my back with a bucket in fact...
*1 Pay-per-cut, as opposed to Pay-per-click.
Thursday, November 18, 2010
"Is that the green one?", I asked, as if it was the most normal thing in the world for a supermarket to be defined by a colour, and thus ensued a strange conversation about the various colours of supermarkets. In fact, in my mind Asda is green (I think most people would agree with this one), Sainsburys, orange; Tesco is blue and Morrisons is yellow. Spar is red and that's the way it's always been.
After a bit of discussion, I came to realise that on the whole, these colours equate to the dominant colour of the logo, and have nothing at all to do with the writing and in fact, I think Tesco is blue just because that's the colour of clubcards*1. It's odd, but I've always thought of things as being a colour first before anything - the pink house, not number 12 or the green petrol station, not BP. After colour, then I think about shape, so I can tell you about a software icon (it's orange and looks like a Z) before I could tell you what the package is called in most cases (and certainly before I can spell it!)
Even odder, is that when I read, I look for shapes of words,*2 rather than reading them aloud in my head. It can be handy, recognising shapes of sections in a book - if you forget who a character is, you might know that you first meet them about halfway through, on a facing page in a paragraph shaped a certain way. All this I find completely normal and hubby does not - hubby thinks I am distinctly weird! He reads words first - he recognises cars by reading the badge on the back rather than knowing the shape of the body and hears voices in his head when he reads books. I think this is weird, but then I guess anyone with voices in their head has to be a little odd ;-)
We got to wondering then why this is. Is this just a similar thing to Synesthesia where you see sounds as colours like Duke Ellington (or even colours as sound, like David Hockney)? Or is the colour thing and the shape thing completely unconnected? Hubby reckoned that maybe it was the way you were taught to read - whether if you learned a, bu, cu, (a,b,c), then you would read 'properly' (his way), but if you learned cat, sat, mat, then you would just recognise the shape of the word and that was 'just plain weird'! He seemed to be suggesting that whoever taught me to read did it all wrong.
I hotly protested that my brother taught me to read before I went to school and asked hubby if he was being so mean as to suggest that my brother was weird.
"I rest my case" he said triumphantly!
Well, I call that cheeky in the extreme and as my brother and I outnumber him 2 to 1, I think we'll go with hearing voices in your head as being more strange than seeing things!
*1 A rewards card for the store
*2 An odd thing about doing this is that some words look very similar - one I always have problems with is Shopfitters, which I somehow always read as Shoplifters. Always thought it was a strange business to run and not one you'd necessarily want to advertise!
Wednesday, November 10, 2010
I started something called a counter (hey, let's be precise and give them the credit, it's Statcounter ) not long after I started my blog. I'm not really sure why I decided on a counter, but I think it's because at the time (partly thanks to PTV) I decided to find out a bit about HTML and was adding all kinds of things to my blog. At the time, templates were, well ...yawn... and gadgets were unheard of - all of which makes it sound like I have been blogging forever, which is blatantly untrue. Anyway, because of this, a little bit of html went a long way in making your blog look a bit brighter and I was just curious about the mysteries of the 'stuff' behind webpages and so sought out my own gadgets (and colour changes!). Its strange that templates are now so good and blogger has changed so much, as the 5 years since I started don't seem so long ago, or does it? Hmmm, 5 years ago I don't think anyone had a touchscreen phone and the iPad was not even a twinkle in Steve Jobs eye...Ummm, maybe the pace of change is extraordinary after all, especially when it involves the Internet!
Anyway (I do say that a lot, don't I?) - despite changes, surgery, stuff and yet more stuff (all of the 'stuff' that makes up life in fact), time has ticked on and my counter has been ticking all the while. Statcounter told me this week that I have had 20,000+ hits which I thought was extraordinary. Does that actually mean that more than 20,000 people have taken it upon themselves to read my drivel? Maybe it means that I have lots of faithful friends who keep coming back, just to make me make me feel good? Maybe someone has me on RSS and I get a hit every time they turn there computer on? I don't know, but I was quite excited by the clicking round of that magic number...
I told hubby (in the way that only an optimist can) how excited I was by my enormous following...and he replied ( in the way that only a pessimist can) - "ah well, but that is over 5 years"...
...Hmmm, 4,000 a year...I'll settle for that :-)...
....and I'm still excited, either way....
Thursday, November 04, 2010
Now, I am sure that there are lots of you out there going bitter? Bitter? What the heck is this girl going on about, but yes, bitter, that's what they taste like to me. In fact, when I was a small child, my mother painted some stuff on my fingernails to stop me biting them (Nil-bite it was called - but other products are available) and that was horrid and bitter and swede, turnip and parsnip taste like that to me.
As a small child my mother would mash the white ones in with potatoes and the orange one in with carrots in an effort to disguise them but it never worked. Why she bothered after a while I don't know, but maybe it was some new and curious game to see if she could fool my taste buds...and she never could! When I first got married the FIL was convinced that with parsnips it was because no one had ever cooked them for me properly by 'removing the hearts' and so one Christmas he did just that for me...and they tasted exactly the same - horrid!
Hubby thinks that maybe it's genetic - like a phenylthiocarbamidem (PCT) taste experiment which some people can taste and some can't. I've got no evidence to prove or disprove it and I can't find anything on the Internet- actually that's wrong, I can find lots of stuff on the Internet, just nothing about this! It does make you wonder though.....
Tuesday, November 02, 2010
I was just trying to find an early entry on my blog and I realised that it's my blogiversary!!
It's 5 years since I started my blog in a life where I was facing major surgery and an uncertain future. Many things have changed since then (including much of the content of my blog!) but despite the prospect of more surgery, I don't feel that same uncertainty about the years to come. We can none of us know what is going to happen to us in our lives, but I just look forward in the most positive way I can. For me it's not so hard, as I'm naturally a glass half full kind of person, but to be honest, life is actually pretty good at the moment. Hubby is well, my mother's arm is out of plaster and mending; the MIL, FIL & BIL are all ticking along in their normal way and my brother's life seems to be moving forward positively. We're getting to see the BUF & VNSO soon, as well as PTV & HLW and Christmas is coming -yay! (I am still a big kid when it comes to Christmas!) - after Christmas we have an exciting trip planned too...
Of course, somewhere in this I also have to fit in a teeny bit of work on my back, which is almost, but not quite where I came in 5 years ago. More meccano in my back will wait for a bit, but I will be getting a bit of maintenance by my surgeon next week. It will at least give me something else to blog about!
I do wonder sometimes - 5 years eh? Will I still be doing this in another 5 years? More to the point, will you still be reading it?
Sunday, October 31, 2010
I have achalasia - I am sure many of you know this by now and I had surgery (a heller myotomy in case you are interested) in early 2009 to treat this condition. I think achalasia is a condition and not a disease, since it is a situation where your gullet doesn't work properly and the normal knock on implication is that the valve at the top of your stomach won't open to let food pass. As an aside, I don't really know what are conditions, what are diseases and what are merely complaints, but there you go, you could fill a book with stuff I don't know! Achalasia varies a bit in how bad it can be, but in my instance, the nerves to my oesophagus just don't work at all so I have no opening of the valve at the top of my stomach and no peristalsis (the squeezing action that pushes food down), past the initial swallow in my throat. The surgery opened the valve (so now it doesn't close) and my gullet acts like a drainpipe which I just shove food through. There is no cure for achalasia, but the surgery treats the worst symptom and I am very happy with the result that I have had. I eat fairly normally and most things are fine and nice to eat (unless they are swede or turnip - both of which I hate!).
The odd thing is, that there are some foods, which I still cannot eat at all. Now I understand that before I had the valve opened, anything lumpy was going to be a problem, but now, if a food is well cooked or soft, I don't see that there should be an issue. So, why is it that when I cooked sweet and sour chicken, I swallowed it and it just sat there, just below my throat and refused to budge? Copious quantities of water (ok, I own up, it was wine!) and it went down. Maybe it's the sour bit that does it? I understand lettuce leaves (low gravitational coefficient) and not chewing your toast properly (too lumpy) but I just didn't get the sweet and sour thing at all.
Odder still is fruit. Especially 'big' fruit. I don't really mean melons here...but apples for example. Apples are just awful! Raw apples are simply impossible and even stewed can be an issue if not mushy enough. Pineapple, orange, melon and pears - all a problem to a greater or lesser degree. Strawberries, raspberries, grapes, blueberries and prunes - all fine - but then they are little. The odd one out in this whole equation, is the banana - comes under the category of a 'big' fruit, swallows like a small fruit. So what's that about? And why fruit? Why apples especially? And even odder is that my surgeon particularly asked me about apples and if I had a problem with them. They are considered to be one of the defining questions towards helping with an achalasia diagnosis. All of which is kind of OK I guess, but I just wonder why...what is it about the humble apple which makes it such an issue? And in that bunny hopping brain way that I have, I wonder if that's what the all problem was with Snow White - that apple she had wasn't poisoned at all, she just had achalasia!
Thursday, October 21, 2010
F*F lives in a part of the country quite close to a lake and one of her favourite pastimes is to go fishing there. Now F*F is a wheelchair user and lives independently along with 2 of the most lovely cats I have seen (apart from my own of course!) but I don't know if that has anything at all to do with her love of fishing - I think she just likes being active. I know, I know, some people would say fishing isn't very active, but believe me, in her case it is, as you will soon find out.
Anyway, she went fishing on this particular day and was lucky enough to catch two fish, which she was really happy about. She then discovered why hubby always says you should put your brakes on (not that he says it to her, he says it to me - all the time!) as she was parked on a little bridge (I think she meant jetty) on the edge of the lake - and it had a slight slope. In fact, it had a slight slope towards the water and in all the excitement of getting her fish, she didn't realise that she was rolling towards it...until it was too late and, as she put it "I get to take a unintentional bath in this lake"...
She went on to say:
"It was not so deep about 1 1/2 to 2 meter, but I get very wet. It was not so fun..."
- no kidding, I thought!
So, there she was, in the water, with her wheelchair and had to get back to shore. I'm guessing that wheelchairs don't float as well as people (I can check this with E2O who went in the river with hers once) and so it must have been quite a struggle to use her best lifesaving manoeuvres on an inanimate lump of metal. She says it didn't get any easier when she actually reached the shore too, as it was really slippery and covered with shingly stuff. Anyway, she managed it eventually (she's a real hero my friend!) and finally got back to the car. It was then she realised that she was soaking wet through and still needed to drive home and did not have anything dry to change into. She recounted this tale so well, I was in hysterics "You should have seen me", she said, "I looks very fun when I swim with the wheelchair"....
She did learn something from her adventure though and I shall put this in her own words....
"I shall have bath cloths on me next time when I shall fishing or brake my wheelchair very hard"
I think that's very good advice...don't you?
Tuesday, October 12, 2010
I am now heading towards 5 years post op (yes really!), and some things have stayed the same, some have got worse and some things have improved so I thought I'd try and put some stuff down about it all. I have to say that it's been prompted by recent hospital visits, but I will get to that in time...
First of all, if you are reading this in the pre-op stage and are wondering what your future holds, please don't expect to be pain free. Your back is a finely interwoven mesh of nerves, muscle and bone and screwing metalwork into it is never going to make it 'normal' - you may be lucky and your pain may improve, but the surgery is to straighten you up and hold you that way so that you don't end up your ear pressed against the window when you drive your car! Anyway, my experience has been just that, I am straight but not pain free and this is what I told my surgeon when I saw him earlier this summer.
He ordered a CT scan (I blogged about it a while back) and I duly had that done. The whammy came when I went back into see him for the results. I warn you right now, I am going to get a bit technical, so stick with me! He discovered that although it is normal to still have back pain after scoliosis surgery, my pain is not exactly normal when considered in relation to that. To start with, my fusion has failed at the top - between T9 & T10 there is no bone graft - on the CT, there's just a black space - "You see that?", said my surgeon, pointing with his pen, "Thats air that is."
I have to say, that this wasn't really what I wanted to hear, and thinking that in the very middle of my back, the only thing holding the bones together was 2 screws and a bit of metal (that I stressed to bits in Disney last year) didn't actually make my tummy feel any less wobbly... He then moved on...
"You see that...?" - he indicates another black space between L5 & S1*1 "You're supposed to have a disc in there*2 and it really looks very unstable. In a nutshell, your fusion needs extending - top and bottom - say 2 or 3 levels (vertebrae) at the top and we should really screw the bottom bit in to your pelvis."
Oh great, thinks I - that's an interesting start to a Thursday (at least I think it was a Thursday!) but at least it might go some way to explaining why my neurological symptoms have been a bit variable. Unstable joints, changeable neuro stuff - it all seemed to fit together. Ah...dear reader (I've always wanted to say that!), I hear you poor scoliosis people getting stressed at the nerve stuff...don't be, this is particular to me....! Anyway, he suggested going in to hospital and they would inject some kind of false joint jelly stuff in the gap at the bottom to see if it would help delay the bigger surgery for a bit. I saw him on the Thursday (I remember now, it was definitely a Thursday) and I was in the following Tuesday - not the treatment I am used to on the NHS I can tell you. He told me to go away and keep a pain diary and then see him again in a month - which is kind of where I am right now...
I go back and see him in a week or so. The big question is, is my back any better for it? Well, yes and no. Yes, I think it's better, but no I don't think what he did had much effect - I think that holiday in Turkey helped more. Do you think I could get him to prescribe regular sunshine all inclusive holidays on the NHS?
*1Technical speak for the very bottom of your back
*2 In fact, the only disc I have, below T8!
Thursday, October 07, 2010
I was just looking at my blog and realised that I haven't done much in the way of updating for awhile - so, do you think I've been busy, or am I just lazy?
Of course, before we went was manic and since we've come back, merely busy, but there you go, that's why I haven't done any updating recently.
Monday, September 13, 2010
The first thing is, that life has been ever so slightly hectic and although that is no excuse at all since everybody's life is hectic these days, it's my first excuse and I'm sticking to it. I do have second and third excuses planned too (so as not to disappoint you), but I shall start with the first one and move on.
My mother has been living with me recently...there, that's the truth of it and that simple statement explains a lot. Many of my friends by now will be nodding sagely and those of you who don't know her, will imagine anyway, that having your mother suddenly come to live with you, is bound to turn your life upside down a bit and they might think that its even more true, when your mother is 81.
Writing down that my mother is 81, makes it sound as if some doddery old lady has just moved in with us, dribbling down her front and spilling her tea, but it's not like that at all. It's even not like that when I tell you that she had a fall and so that's why she was here. Nope, my mother is not that kind of 81...my mother is the kind of 81 that...that...well...actually she's not like any kind of 81 in fact. I think I need an example...
A couple of years ago (just before she turned 80), she went to Cuba and then she went to
China (coming home on the Trans Siberia Express and dropping in on Mongolia on the way to stay in a yurt) and then on to Canada. Apparently she wanted as many trips as possible before her travel insurance ran out at aged 80 and she had to buy a more expensive policy - so she decided to do countries beginning with the letter C (I think). I did actually point out to her at the time that doing one letter per year at aged 80 wasn't necessarily the best plan as by my reckoning she'd be about 104 by the time she got to Zaire, but she didn't seem too bothered by the idea that she might have to tote her zimmer frame out on safari with her - just as long as she could use it to rest her camera on.
She did take a little break this year, to go to Oberammergau - a bit out of order its true, but its only on once every 10 years and wasn't going to fall in sequence next time round either... I dunno, she seems to collect countries like some old ladies collect china ornaments. Most recently she has been collecting African Mediterranean countries Libya and Morocco spring to mind and (although not in Africa) is now talking of Nepal. I'm thinking this is just a way to revert back to working her way through the alphabet, at a slightly speedier rate...but who can tell...
Anyway, all of this is by way of explaining how she isn't your typical pensioner (if there is such a thing) but doesn't really explain how she came to be here, although it's true that she had a fall. Three weeks ago, on a Sunday morning, my mother called to say she'd fallen in the night and thought she'd broken her arm. In reality she fell down the stairs - all the way down the stairs, hit the wall at the bottom, turned the corner and landed on the quarry tile floor. She explained it as "rather like doing a slinky" ... which says it all really. She then got up, dusted herself down, climbed back up the stairs, and since it was 3.30 in the morning and she didn't want to bother anyone, she went back to bed. She called us at 9.30 and we picked her up and took her to hospital where they confirmed that it was, indeed, broken. So that was it, arm in a plaster and sling, right arm (and she's right handed) and it was back home with us...I haven't had time to do a thing since then.
Aha! I can hear you all say, but what about now - how come you have time to blog now? Well, the now is that she wanted to get home and so she went home with her arm in plaster just as soon as she felt able to cope (which was last Friday). She's doing fine (thanks for asking!) and hopefully will get the plaster off in another 2 weeks. At least one good thing has come out of all of this though, as given the steepness of the stairs versus the age of the lady equation, I think she can be fairly confident she doesn't have osteoporosis!
Friday, August 20, 2010
There I was, minding my own business (I actually do this quite a lot - it's often safer) and was following my normal pattern of heading for my physio's office which is on the first floor. It's actually well into the bowels of the building too, and quite a long way to walk, so I tend to take my chair. Actually it's almost always simpler to do that anyway, because since they moved to the new treatment centre on the second floor, you have to go through the sports science department to get to the treatment room and so there's no waiting room. I just know that if I sit down to rest on one of those fancy exercise machines in that rehab gym, someone will probably shout at me and tell me to 'work harder' and 'stretch it out'! Waiting by simply standing around not really being an option (standing is just about the worst thing for my back), I take my chair - and all of this is just a complicated way of telling you why I always take the lift instead of the stairs!
So, this day, I got to the institute, went inside and found the lift had an out of order sign on it so went back to reception to find a member of staff to take me up in the service lift. Now, the service lift really is in the bowels of the building, it's dark, scary and full of spiders. The doors open on both sides but I've only ever seen the one side open - I think if they ever open the other side it will lead to a dark and gloomy land full of scary monsters where giant crabs roam the countryside and humans are hunted for their sweet meat...
Sorry - I'm back with you...
Anyway, the nice man (let's call him Bob*1), who took me up in the service lift told me that the other lift was out of order because it was full of bees. I don't think Bob really meant full - like crammed in, like how many students you can get in a telephone box or 'tell me sir, for first prize, how many bees can you fit in this lift?'- not that kind of full! I did wonder though, how the bees got there - I mean - did they form themselves into a man shaped mass to fool the automatic door opener and then follow the sign that says 'Bees this way' to get into the lift (pressing the button to call it with many little furry legs)? Or did they come down the lift shaft and if so, how? Is the shaft open at the top? And that's another thing, why were the bees there? I am assuming that it was not to see how many they could fit in there, and for sure, they weren't trying to find a quick way to the second floor, as that lift is the slowest lift in the whole world. It was donated for the use of the disabled, and everyone knows by now that disabled people can't go fast in lifts...or their eyeballs will explode....or something... Anyway, before I ask any more questions and ramble any more, the short story is that there had been a swarm and Bob said that they had to call in the fumigators to deal with it.
I thought this was actually quite sad, the fact that they killed them, but it reminded me of the FIL who had bees in his chimney. FIL and MIL called the council, who sent a man, who killed that swarm too. I wonder if this is why the bee population is declining? Are bees trying to set up home in completely inappropriate places all around the world and then getting murdered for their efforts?
Friday, August 06, 2010
Now, I was feeling in a very brave mood that day and decided to venture out without much idea of where I was going - after all, he only lived about 5 miles from me so how hard could it be to find his house? Of course, I did have a sat nav in the glove compartment of the car but I was soon to find out that this wasn't too much use when driving along in heavy traffic with no way to pull over....
Anyway, not being completely stupid, I had checked the map on my phone before I'd left the house and I actually had quite a good idea of where I was going before I set out. In fact, I had actually set the phone to give me directions, but I started to disbelieve it quite quickly, when it kept asking me to turn left when I knew that was going to take me somewhere else entirely from where I wanted to be. I've heard those stories about sat navs, the ones where you end up in the river or something and that wasn't going to be me - no siree!
I guess, after a little while, of the phone saying turn left and me realising that actually 5 miles from my house may as well be 105 miles for all the familiarity of the area that I had, I thought that I maybe should admit defeat, stop the car and either ask for directions or turn on the real Tom Tom who (so far) has never let me down. I pulled into a side road, only to notice that it was Heather Street and Clover Street was directly opposite. Now I took notice of this, because I was looking for Daffodil street and I was starting to notice some kind of a flower trend going on here and much like Reggie Perrin's poets estate it seemed that I was certainly in the vicinity. I pulled back out of the junction, headed on up the road and there it was, the street I was looking for. I found the house number, spotted some timber in the front yard (which seemed promising given what I was collecting) and knocked on the door.
It was at this point that the trip started to get rather bizarre as a small child (SC) answered the door, rather than the 6ft something chap that I was expecting and a strange conversation ensued:
Me: "Is your dad in?"
Me: "Are you sure?"
Me: "Oh, I'm supposed to meet him. Are you sure you are sure?"
SC: (Looks at me as if I am stupid and nods)
Me: (Thinking maybe I made a mistake - after all, I was supposed to meet the guy) "Um,is his name Mark?"
Me: "Are you sure?" (don't ask me why I asked this, thinking back it was a a stupid thingto say!)
SC: "Yes" (again looking at me as if I am stupid)
He then turned on his heel and shut the door in my face - presumably having decided that I was actually a loony...
I started to head back to the car but was stopped by the sound of a woman's voice behind me - it sounded cross, in the way that only a mother who feels her child is being terrorised, can sound. I turned slowly, expecting the worst...as she demanded to know what I wanted. I started to explain and almost immediately was struck by a thought...
....I bashed my forehead with the heel of my hand...
"B*gger" This is Buttercup Street, isn't it? I wanted Daffodil!"
If you can slink, getting into a car, I did it and headed off round the corner to find Daffodil Street and Mark - who was there, as arranged.
Some time later at home, I told hubby the story of my trip and he howled with laughter. He made the point though that my head seems to be wired up in a fairly wonky fashion. After all, he said, it's not like there was a picture on the street sign to show that they were both yellow flowers - you just knew they were both yellow and so your brain made the connection without even seeing the wording on the sign - that's just weird that is!
Wednesday, August 04, 2010
The husband asked...
"Because I woke up this morning and nothing hurts."
Thursday, July 15, 2010
I've been using computers for a very long time now - in fact I've actually been using a personal computer at home since a time when I had no idea how to use it at all! Hubby persuaded me that having a computer would be a great idea and so we spent a big chunk of my severance pay on something which was extremely whizz bang and up to the minute at the time. It really was something - it came with 3 disk drives - a 3.5, a 5.25 and a 20Mb hard drive - and yes, you read that right, it was 20 megabytes, not gigabytes *1. For the techies amongst you, the drive wasn't SATA, it wasn't even IDE, in fact, it was something called RLL which I think (since this was such an archaic device) probably stood for 'revolves lots and lots'. When we bought it, we also bought a copy of a new operating system called Windows, which we had seen demonstrated and a copy of Dos, which had to be installed before anything could be done at all. I famously rang hubby up in work (yes, there were phones at that time) and asked how I could get the Dos OS onto the computer, because it came with no instructions at all. Anyway, hubby said "put the disk in the drive and then type 'copy a twinkle dot twinkle c twinkle dot twinkle" - which just meant nothing at all to me! Anyway, after a bit of explaining, I managed it and after these first small steps things progressed pretty rapidly. They had to really, because the damn thing didn't work (twinkle or no twinkle) and I ended up on the phone to help desk - before I knew it I was thrust into the bowels of Edlin and on a really steep learning curve. Eventually, with our new copy of DR-Dos (not MS-Dos!) working, I installed Windows only to find that it was Windows 2 - not 3 (which was what had been demonstrated) and it mostly wasn't even in colour and so ensued another long story...
All of this is rather a long way from where I started with this entry, but you know me, never known to ramble ;-)
Its strange really, the way that your mind bunny hops from one thing to another, because all these memories came flooding back because of the new iPad. I know, I know, there's hardly any link at all between the iPad and our first PC apart from the fact that they are both a kind of computer but there you go - you are about to find out why my mind did the hopping:
I read a review recently on the iPad and about how robust it is with it's aluminium back and scratch resistant screen - heck, it even said you could spread it with jam and it would still work! Well, that reminded me of when they first started producing CDs (which was not that long before the time that we had that first PC) and I heard an interview on the news on Radio1 which was saying how amazing these new fangled shiny music discs were. It was said they were so amazing that you could even spread them with jam and they would still play. I mean, what it is with jam? Is there a special department in every new technology company where they test new things out with foodstuffs? Does some little guy with a clipboard and a white coat (with a row of pens in his top pocket of course) approach the boss and go "Mr Jobs, it's OK, you can release this one, it's withstood mashed potato and apple crumble - as soon as it's passed the jam test we're good to go!"
If you happen to work for a new technology company, please let me know why you don't use marmalade? Is it, as I suspect, that the coefficient of stickiness to lumps of peel doesn't produce precisely calculable results - or is it just that Stephen Fry only puts strawberry jam on his toast?
*1 Huge, when most were only 10Mb!
Friday, July 09, 2010
This is a meme on reading which I got from arbitraryconstant (who got it from normblog and More Than Mind Games) . I haven’t done one for so long and I always think they are interesting and/or fun. If you'd like to fill it out, please do and leave a link to your blog in the comments.
Do you snack while reading? > I don't normally, but I did fancy a nibble when reading Silence of the Lambs.
What is your favourite drink while reading? > At the risk of sounding fixated on Thomas Harris, I am partial to a glass of red wine (although my real preference lies with Merlot, not Chianti).
Do you tend to mark your books while you read, or does the idea of writing in books horrify you? > I have occasionally pencilled marks in textbooks, but even with a pencil I feel guilty. I favour scraps of paper with added notes tucked in at the appropriate place.
How do you keep your place? Bookmark? Dog-ears? Laying the book open flat? > I love bookmarks but always seem to forget them and either use any old receipt or scrap of paper handy or (sharp intake of breath), turn the corner over. I do have bookmark with '50 books to read before you die' on it and before I die, am determined to read them all!
Fiction, non-fiction or both? > I've read both but I am a trash fiction reader first and foremost. I'm not ashamed to say that it's escapism all the way for me (as long as it's not romantic (phtew - spit!)) trash!
Do you tend to read to the end of a chapter or can you stop anywhere? > I love to read to the end of a chapter - it satisfies the 'completer finisher' in me but due to the nature of some of my reading time (and the type of books I read), it's not always possible.
Are you the type of person to throw a book across the room or on the floor if the author irritates you? > Gosh no, um, does anyone?
If you come across an unfamiliar word, do you stop and look it up right away? > Um, actually the kinds of things I normally read don't have long words! Seriously, if I can't figure it out from context or derivation then I will mostly gloss over it until later. Occasionally it's unavoidable and you have to stop, in which case I'll ask hubby (who's good at words) or (if I have to), look it up.
What are you currently reading? > I just started reading The Final Reckoning by Sam Bourne only to discover I'd already read it and had forgotten it because it wasn't that great. His book The Righteous Men was superb though.
What is the last book you bought? > Unseen Academicals by Terry Pratchett - haven't read it yet. I've always loved his books because they are just about the only ones I've ever read that have made me laugh out loud. On the Terry P subject, I thought his Dimbleby lecture was superb ...
Do you have a favourite time/place to read? > My favourite is in my armchair - at night but I actually do most of my reading outside while waiting for other people.
Do you prefer series books or stand-alones? > I like both and can't decide.
Is there a specific book or author you find yourself recommending over and over? > Not really, just about everyone I know has different taste from me; I have recommended individual books when I felt someone else would enjoy them.
How do you organize your books (by genre, title, author’s last name, etc.)? > I group by Author on the whole but I have 3 'reading shelves' which contain a mix of books I haven't read yet but want to get round to. They are organised in the order in which I'd like to read them. If they weren't in any order at all I would feel pretty unnerved, but that's just me. I have so far resisted the temptation to make a list...
Saturday, July 03, 2010
It's interesting, this idea of equality (and I will stick to being disability specific here as it's what I have most experience with), as I was brought up to try and do my very best to be just like everyone else. Funnily, this did not mean that my life was in any way equal to anyone else at all, even though that's what my parents were striving for. I went to a mainstream school and did pretty much all the things that other kids did (except ballet!) but in fact the 'equality' came at a cost. In fact, to look equal and achieve as much as others did, I had to just work harder to be as good as them. Things took longer for me and they were much more tiring and/or painful, but on the face of it, it looked like stuff was just as normal for me as the rest of the world.
It's also interesting therefore, that over the years I have come to think that equality shouldn't necessarily look the same for all - women do not has to wear men's suits to be good in business and disabled people can have an equally useful life as anyone else regardless of their differences. We all know this, it's old hat, but I was thinking about it recently when I was reading a blog entry by Bad Cripple about a recent visit to Home Depot where an employee told them to "stop speeding" in the store. BC was really upset that the employee felt that they could just chip in, bringing attention to the wheelchair and make a joke at his expense (you can read the entry here) but I wondered if there was more to it than that. In these instances, firstly, would the employee be making a joke with any of the other shoppers, the old ones or the red haired ones; in other words are they in fact just a bit socially inept? OK, maybe not, but in my experience, there are lots of very well meaning people who have no idea how to approach the disabled, but who want to connect with them in order to help, or who just want to chat to them in an equal way. They try to make jokes, offer if they can help in the oddest of situations (I once had someone offer to push me on a railway platform when I was talking to the BMB who was walking beside me!) and sometimes seem as though they have no concept of equality at all.
I wonder if they behave in this way because the alternative might be to completely ignore you - and down this route lies the whole 'does he take sugar1*' aspect of disability. I guess the fact of it all is that you don't wish to be ignored too, as it just makes an already difficult life even harder, so human contact, if well meaning, (regardless of how clumsily it is handled), is the preferable circumstance. I have recently been in a situation where it is going to be hard for me to attend an important event because it is assumed that I will cope, because no one is talking about my disability and my personal situation is being ignored. Part of me (the well meaning part) thinks this may be that those concerned think that it is equality to treat me the same as all the other attendees when in fact it has the opposite effect on my ability to attend. I wanted to be asked if I had any needs, I didn't want to have to phone anyone or make a big fuss or insist on anything at all, I just wanted to be contacted and I wouldn't have cared if someone used the wrong language.
The fact of it all is that it's a horribly complicated life in which none of us are in any way equal to anyone else. We all look different, have different levels of intelligence and standards of education, we have different levels of ability in sport, art and practicality and some of us have disabilities. There's nothing we can do about all of this, we are all different and that's just the way it is. When society talks about equality it should be about making it easier for those whose differences make it more difficult to do the same as everyone else (if that makes sense). Drop kerbs are a simple case in point - they make it easier to get a wheelchair or kid's pushchair across the street - making it just like it is for anyone else - thus generating equality. Action needs to be taken to create equal circumstances and for action to be taken the people need to make contact with each other - however poorly...
By the way, if any of this entry seems rather rambling, then forgive me. I have been interrupted every 5 minutes by hubby who is trying to do something new on his laptop. He assumes that I know how to do what he wants to do (when all I would do it point and click and keep my fingers crossed!) and in between those 5 minutes he has been talking to himself and muttering - I've just had a few issues in keeping concentrated...!
Wednesday, June 23, 2010
Our plumber is a real treasure and does good quality work and so when he fitted the sink, he also applied sealant all around the outside edge as a finishing touch. He cleaned the nozzle off on his sealant with a tissue of some kind (he's very neat) and was chatting to me as he tidied away his tools. Unbeknownst to both of, the cat was sniffing around (that would be Clumsy) and (because he is clumsy) managed to trip over the tissue as he passed it. I guess this wouldn't have been a problem if only he had then gone to lie somewhere quietly out of the way but he didn't. The thing is you see, that Clumsy has an obsession with my computer printer (as I know I have mentioned before) and although it seems unrelated to plumbing, I am sure that those of you who know me will gather that you are about to discover some kind of link. The plumber needed to go on to a new customer after me - somewhere he'd never been before and so he asked me (innocently enough) if I knew where it was and I didn't but I said "I know a man who does" (or who can) …Now of course, that’s a bit of a fib as I know a machine that does, but the 'knowing a man who…' expression became rooted in our household in much the way that 'it does what it says on the tin' or even 'simples'…. In fact (at the risk of digressing), that is a constant source of amazement to me - the fact that we absorb good advertising slogans - over the years we have asked Sid (I don't know who he was or anything, I just know we should ask him), famously almost everything these days does (or doesn't) do what it says on the tin (or box or bag...) , we work rest and play and many other things too - all crept into our lives from the back of some advertising executives head. These days we have 'its only a fur wound' to go with 'simples' and that's just from one campaign. Mind some are a bit odd - I distinctly remember from my childhood 'there are two men in my life, one is my husband, the other is my wife'…but maybe I misheard it or something? That's like those records you hear isn't it - the ones that go something like 'four hundred children and a dog in the field'…? I think I'm getting distracted here..I shall go back to the plumber…
So, where was I? Ah yes, the plumber wanted directions to his next job and so I went to the AA website (a very nice man, a very, very nice man…) and typed in the address for him. It gave me directions and I pressed the print button to give a copy to the plumber. It's at this point that Clumsy comes hurtling into the room as he hears the valves warming up in our printer - he leaps up onto the desk and thrusts his arm, complete with tissue attached to it by a large gob of sealant, straight into the slot in the printer. I had visions of the sealant acting like superglue and him being glued permanently in place, completely ruining any chances of photocopying anything ever again…
…well, as it happens, we got lucky (or he did) as he timed it perfectly - thrusting his arm in as the printer thrust the paper out. The two met with a rustling tearing sound (this often happens when he meets our printer and usually involves yet another copy being done (sigh!)) - but then, there was a distinct schlopppp sound as he withdrew his arm, minus tissue and sealant and the paper emerged with the offending article firmly attached. OK so I did have to reprint, but hey, the print head was clean, the paper slot was clean and the cat was clean …you couldn't have planned for a better outcome…even my language was clean and it surely wouldn't have been with any of the other possible outcomes...
Friday, June 04, 2010
My bendy back, despite its 30-odd degree curves, (well hidden inside my straight exterior) and held together with scaffolding and screws, serves me well. There are some who would say that I don't treat it too kindly, especially when they see how I wince when I drive over speed bumps, but there you go. Actually, I don't wince that much when I drive over speed bumps, despite the fact that I possibly drive everywhere faster than just about anyone else I know, but at least when I drive I have the steering wheel to hang on to. It's an odd thing being a passenger in a car - you have nothing to hang on to, every bump and you are tossed around like a little rag doll - to be fair, its not the getting thrown in the air I care about, it’s the coming down on the end of the rod that does the damage... in fact, several of my friends are now saying "well, you try doing that with a rod up your ar*e", before I manage to do so. Cars are kind of OK, at least my feet normally touch the floor, which helps and being able to see out the front (thus getting some advance warning) also helps, as you can boost yourself up from the seat so that the springs don't hit you in the rear end quite so hard when you land! Nope, cars are alright, its coaches and busses that are the killers. You have no idea what is coming, my little legs have no way of reaching the floor and just dangle in space until I am hurled upwards at maximum velocity, only to experience a tiny 'oh no!' moment (just like Wile.E Coyote) just before I come down to earth with a, very much unwanted, bang. This is usually followed by a string of expletives (mostly expressing the term 'ow!') and then a chorus of voices saying …"you try doing that…"!
Anyway, I digress a bit, except that speed bumps are some of the more uncomfortable (nay painful) things that go on with my back. Those of you who follow my back know that I am not pain free, but I am in a so much better place than I was when my head was increasingly moving sideways as if planning on driving with my head permanently stuck out the window *1. I feel that I cope with my back pretty fine, I am happy with my results and well, that's about it really. My only concern really has been that I am supposed to get an annual checkup with my consultant and I have been waiting for my latest follow up since 2007. Yes, you heard me right, 2007. To be truthful, I have actually seen my consultant once since then, but only because I paid to see him privately over a concern that my physio had! I have not seen him at his NHS clinic, even though he told me that he 'wanted to keep a close eye on me'. If this is a close eye, I hate to think what happens when you slip below his radar!
It's not like I haven't been chasing for an appointment either - oh no, every 6 months or so, I phone up and speak to the Bureaucratic monster lady and she fobs me off for a bit and so on and so on. This year I decided to create just a teeny bit more and told her that I would phone her every week until I had some news and lo and behold, she discovered, while I was on the phone(!) that she did have an appointment after all. Well, fancy that….! Hmm, if anyone else ever tells me what a wonderful healthcare system we have in this country, I shall, I shall….well, do I shall something…!
Anyway, back to the beginning, having rambled off topic for much too long. I did actually get to the clinic and after an hour and 20 minutes wait (good old NHS again!) I got to see my consultant. To be fair, he is a really nice guy and probably majorly overworked, but all the same it's still not a great system. Anyway, he had a little look at me and a chat and then gave me some news I really wasn't expecting. He said, you know how you only have one joint that moves at the bottom of your back (L5), well, I fear that it is unstable …and by the way, where do you get your pain? I pointed to there (there and there) and he went Oh. Mmm. Ah. All fairly closely followed by 'we may have to look at extending your fusion - top and bottom'. I think my eyes opened wide, and my mouth went into a little tiny O shape, and it was my time to say Oh. Mmm. Ah. It was all rather unexpected really…
Next he decided to check when I last had a full scoliogram and CT scan and discovered it was in 2006. Yes, really in 2006, the year that I had the surgery done - that 2006! That really is a 'close eye' isn't it? Anyway, that's where we are now, my appointment came through yesterday for the CT and he gave me the number of his private secretary instead of me having to contact that BML again. This is so that once the scan is done, I might hope to see him before the end of the year - maybe even before the end of the summer. I actually find all the waiting quite frightening really - what if I had had to wait for my achalasia operation (which I had done privately) - there I was diagnosis to surgery in 3 months (and would have been quicker if it was easier to diagnose) - if I had had to wait 3 year, and on a good week only lost a 1lb in weight throughout that time, well, it doesn't really bear thinking about. Anyway, watch this space for more news - I promise to be a good blog mama and write often ;-)
*1 For you all across the pond, please remember the driver sits in the right hand side of the car …and yes I know that seems odd!