As some of you know, my stepdad Chris is a musician and has been most of his life. He mostly plays the blues, and he mostly plays the guitar, and he's good enough at it to have been able to make a living doing it for the last thirty-odd years (although of late he's had to physically do less gigs due to the demands of looking after my mum and his own ahemageahem and health, particularly now they've both had heart attacks). I don't even like the blues, and I'll admit he's good. The steel guitars in particular give me a real headache - but I concede he certainly knows what he's doing. He looks the part too - long grey ponytail, grizzled beard, he can "do" blues.
So much for background.
His preferred local music shop has just moved to premises nearer the house, and today he popped in to have a look, say hello, and pick up some guitar strings. Because of the move they had a "lucky dip" offer, every customer had a go.
Chris got this mug. Click the picture for the big version. In case you're using a screenreader, it is bright yellow and bears the words "I'm Learning Music" in rather wonderfully childish lettering.
The staff at the music shop (when they'd stopped laughing, I presume) were very apologetic, but he proudly brought his mug home and I suspect he will treasure it and show it to everybody who comes to the house.
I think it's fantastic.
Saturday, July 29, 2006
Lowestoft Airshow - Day Two
Alternative Title: "I'm oh so tired..."
12 noon
Well, I managed a bit more sleep in between the roadworks, but now the flights have started (Red Arrows judging by the sounds) so it's Mary wake-up time.
1pm
I feel really sick and dizzy today with the ME and unfortunately the earplugs are only making that worse, so it's putting up with the noise for today.
4pm
Mum calls, with computer issues. I'm relieved to have something useful to do and take my mind off things so I slowly and carefully take myself over there. The fan in her PC's power supply unit has given up, so with my supervision she extracts it and takes it to the nearest computer shop to ask for "a new one of these, please" - I admit this is not the most cost-effective method of computer part replacement, but it's quick and easy. She brings it home and I watch her put it in, then I connect up the wires and hey presto, one working computer again.
While I am at mum's house, Davina comes home. The silly (and did I mention, fair-skinned?) girl has been out for both of the last two days, 11am until 5 or 6pm, on the seafront where shade is hardly in abundance, wearing a bikini and relying on sunscreen and sunscreen alone for protection. And now she has sunburn. Bright red, angry, painful sunburn. All of a sudden, being stuck indoors isn't so bad...
9pm
I get the news that apparently there isn't going to be a second night of fireworks. There may be a god.
Steve and I say goodnight on the phone and I curl up for the night. Just on time, I remember to turn off my alarm clock - tomorrow is Saturday and I don't think Steve would appreciate a wake-up call!
7am
Amazing, a full night's sleep. That's SO much better :)
12 noon
Well, I managed a bit more sleep in between the roadworks, but now the flights have started (Red Arrows judging by the sounds) so it's Mary wake-up time.
1pm
I feel really sick and dizzy today with the ME and unfortunately the earplugs are only making that worse, so it's putting up with the noise for today.
4pm
Mum calls, with computer issues. I'm relieved to have something useful to do and take my mind off things so I slowly and carefully take myself over there. The fan in her PC's power supply unit has given up, so with my supervision she extracts it and takes it to the nearest computer shop to ask for "a new one of these, please" - I admit this is not the most cost-effective method of computer part replacement, but it's quick and easy. She brings it home and I watch her put it in, then I connect up the wires and hey presto, one working computer again.
While I am at mum's house, Davina comes home. The silly (and did I mention, fair-skinned?) girl has been out for both of the last two days, 11am until 5 or 6pm, on the seafront where shade is hardly in abundance, wearing a bikini and relying on sunscreen and sunscreen alone for protection. And now she has sunburn. Bright red, angry, painful sunburn. All of a sudden, being stuck indoors isn't so bad...
9pm
I get the news that apparently there isn't going to be a second night of fireworks. There may be a god.
Steve and I say goodnight on the phone and I curl up for the night. Just on time, I remember to turn off my alarm clock - tomorrow is Saturday and I don't think Steve would appreciate a wake-up call!
7am
Amazing, a full night's sleep. That's SO much better :)
Friday, July 28, 2006
Lowestoft Airshow - Day One
Lowestoft Airshow is a big free two day airshow on the seafront, an interesting event to try and tackle. Last year I went to one day and stayed home the other. The day I went was great, I had friends and we had fun, everyone was ok about stopping for rests, and with my flat being so close to the main seafront "arena" we had an area we could go to for shade and drinks and rests. The day I stayed home wasn't so good. Have you ever tried sleeping while there's a battle re-enactment involving planes, guns, warships and so on just a couple of hundred metres away? Not to mention various display teams and bombers and helicopters and whatnot coming in overhead all day. The flat vibrates and not in a good way either.
Of course none of it compares to spending the full two days out and about, flirting and dancing and going on the fairground rides and generally having a ball all over the place, but let's be realistic.
So I'm praying that I'll be able to get out and about again this time round. However it's a lot hotter this year, and I'm having a worse time of it, so I'm not hopeful.
-------------------------------------------------------------
7:25
Woken up by a pair of builders demolishing a wall outside the flat. There's a lot of this sort of thing - people who can work flexitime want to get their hours out of the way before the flight-time gets started so that they can go and enjoy proceedings with their friends and families.
I glare out of the window to see if I can demolish the wall for them with my Laser Eyes of Doom but fail, so I take in the knowledge that it's a beautiful day and resign myself to the pounding of the sledgehammers.
Settling back, I start to stretch and realise that while today isn't a Bloody Awful day, I won't be going to the airshow. Even if someone pushes me in my wheelchair I wouldn't be able to manage more than an hour, tops. Unfortunately there is one thing I have to do, and soon...
7:55
I head out to the Co-Op, which opens at 8am. Luckily it's only a block away and all I really need is some fresh milk (it's going off quicker than usual in this heat) and some fruit juice. The streets are already more crowded than they would usually be on a Thursday at any time of day, because every other local has had the same thinking as me. By 10am you won't be able to move here for tourists, much less get the things you want at the shop.
The lovely staff let me put my shopping in two bags and carry them back to my flat one bag at a time. I hadn't realised my arms were that weak today, but at least my legs, although painful, are bearing up.
11:30
Flights have started. Fighters by the sound of it. Flying in from the sides, so at least they're not rattling the windows by flying in over the houses like they have done before.
1pm
The earplugs are making the sound a lot easier to deal with though - I can still hear but it's very muted.
2pm
I could still hear the flat buzzer through the earplugs, which is a good thing because Pip turned up at the flat. Crisis time, he's broken up with Davina. Obviously we don't need the ins and outs of it on my blog, but I can't pretend that I'm upset about it - relieved would be more accurate. Anyway, the two of us got into a taxi with the littlun and went back to his, where we can still hear the planes (especially the bombers) but not at a level where we need earplugs.
6pm
Feeling slightly disturbed that Pip has phoned one of his friends to see what's happening this evening - and Davina is still with them. Although he didn't say it out loud, I reckon he was thinking roughly what I was, which involved words like "loyalty". Pip as a father is having some of the same issues I as a disabled person am - he's just not always a "convenient" person to spend time with, having to think about his son and nap time and buggy-access and all the rest of it.
6:30
Littlun's had an extraordinarily long nap which means he'll be awake enough to go and SEE the firework display tonight (as opposed to being woken up by it and crying for ages).
9pm
Pip drops me home and heads out to look for the group, and after a quick check of messages I curl up in bed. I've been having little dozes on the sofa at Pip's house while Littlun napped and Pip played on the playstation and got some stuff out of his system, but I need some proper sleep.
10:15
Poxy fireworks. Poxy window-rattling fireworks. Gaa.
11pm
Poxy people singing in the road. Gaa.
2am
Poxy chav woman yelling an argument with someone I presume to be her boyfriend over the phone.
2:30
Love, if you don't want to speak to him, stop answering your sodding phone! I'd put the earplugs in but it's not such a good idea to have them in overnight.
2:45
They've got to run out of phone credit or battery soon. People all over the street are leaning out of their windows and telling her to shut up, so she's alternating betwen yelling at her phone and yelling at them to "mind their own fuckin' business" to which the unanimous answer is "we'd love to!"
3am
Oh thank god.
5am
Excited tourists coming back from the beach (or possibly from Ness Point) yelling to each other about how exciting it was to see the sunrise from the most Easterly point in Britain. The sunrise is a beautiful thing, it's true, but did you have to wake me up about it?
7:30
Alarm goes off for me to give Steve his wake-up call. To my shame I hit it and rolled over and fell asleep again. But when I called later, it rang and rang so I assume he was in the shower.
8:30
Digging up the road outside my flat commences. I guess that means it's a new day and time for a new post...
Of course none of it compares to spending the full two days out and about, flirting and dancing and going on the fairground rides and generally having a ball all over the place, but let's be realistic.
So I'm praying that I'll be able to get out and about again this time round. However it's a lot hotter this year, and I'm having a worse time of it, so I'm not hopeful.
-------------------------------------------------------------
7:25
Woken up by a pair of builders demolishing a wall outside the flat. There's a lot of this sort of thing - people who can work flexitime want to get their hours out of the way before the flight-time gets started so that they can go and enjoy proceedings with their friends and families.
I glare out of the window to see if I can demolish the wall for them with my Laser Eyes of Doom but fail, so I take in the knowledge that it's a beautiful day and resign myself to the pounding of the sledgehammers.
Settling back, I start to stretch and realise that while today isn't a Bloody Awful day, I won't be going to the airshow. Even if someone pushes me in my wheelchair I wouldn't be able to manage more than an hour, tops. Unfortunately there is one thing I have to do, and soon...
7:55
I head out to the Co-Op, which opens at 8am. Luckily it's only a block away and all I really need is some fresh milk (it's going off quicker than usual in this heat) and some fruit juice. The streets are already more crowded than they would usually be on a Thursday at any time of day, because every other local has had the same thinking as me. By 10am you won't be able to move here for tourists, much less get the things you want at the shop.
The lovely staff let me put my shopping in two bags and carry them back to my flat one bag at a time. I hadn't realised my arms were that weak today, but at least my legs, although painful, are bearing up.
11:30
Flights have started. Fighters by the sound of it. Flying in from the sides, so at least they're not rattling the windows by flying in over the houses like they have done before.
1pm
The earplugs are making the sound a lot easier to deal with though - I can still hear but it's very muted.
2pm
I could still hear the flat buzzer through the earplugs, which is a good thing because Pip turned up at the flat. Crisis time, he's broken up with Davina. Obviously we don't need the ins and outs of it on my blog, but I can't pretend that I'm upset about it - relieved would be more accurate. Anyway, the two of us got into a taxi with the littlun and went back to his, where we can still hear the planes (especially the bombers) but not at a level where we need earplugs.
6pm
Feeling slightly disturbed that Pip has phoned one of his friends to see what's happening this evening - and Davina is still with them. Although he didn't say it out loud, I reckon he was thinking roughly what I was, which involved words like "loyalty". Pip as a father is having some of the same issues I as a disabled person am - he's just not always a "convenient" person to spend time with, having to think about his son and nap time and buggy-access and all the rest of it.
6:30
Littlun's had an extraordinarily long nap which means he'll be awake enough to go and SEE the firework display tonight (as opposed to being woken up by it and crying for ages).
9pm
Pip drops me home and heads out to look for the group, and after a quick check of messages I curl up in bed. I've been having little dozes on the sofa at Pip's house while Littlun napped and Pip played on the playstation and got some stuff out of his system, but I need some proper sleep.
10:15
Poxy fireworks. Poxy window-rattling fireworks. Gaa.
11pm
Poxy people singing in the road. Gaa.
2am
Poxy chav woman yelling an argument with someone I presume to be her boyfriend over the phone.
2:30
Love, if you don't want to speak to him, stop answering your sodding phone! I'd put the earplugs in but it's not such a good idea to have them in overnight.
2:45
They've got to run out of phone credit or battery soon. People all over the street are leaning out of their windows and telling her to shut up, so she's alternating betwen yelling at her phone and yelling at them to "mind their own fuckin' business" to which the unanimous answer is "we'd love to!"
3am
Oh thank god.
5am
Excited tourists coming back from the beach (or possibly from Ness Point) yelling to each other about how exciting it was to see the sunrise from the most Easterly point in Britain. The sunrise is a beautiful thing, it's true, but did you have to wake me up about it?
7:30
Alarm goes off for me to give Steve his wake-up call. To my shame I hit it and rolled over and fell asleep again. But when I called later, it rang and rang so I assume he was in the shower.
8:30
Digging up the road outside my flat commences. I guess that means it's a new day and time for a new post...
Sunday, July 23, 2006
If I could invent one thing
... it would be a beaker of water that I didn't have to get up to fill each time it got empty. I have fallen over that many blasted times this week while refilling my water, it is unbelieveable.
On the plus side, I have a plastic beaker with a capped straw and a lid, so spillage and breakage isn't too much of an issue.
(I just know some clever git is going to suggest having a big bottle of water in my bedroom. First of all, that'd have to be refilled too, unless I'm going to somehow lug between two and four litres of water for each day up the stairs and then store it all under the bed. And secondly, I'm often too weak to lift more than a litre to pour from.)
And, to make this post less moany, I have some peaches. They were in a punnet to "ripen at home" and they should be ready to eat tomorrow, and they smell utterly fantastic. Even if I don't eat the whole punnet, who cares, they're making the flat smell gorgeous.
On the plus side, I have a plastic beaker with a capped straw and a lid, so spillage and breakage isn't too much of an issue.
(I just know some clever git is going to suggest having a big bottle of water in my bedroom. First of all, that'd have to be refilled too, unless I'm going to somehow lug between two and four litres of water for each day up the stairs and then store it all under the bed. And secondly, I'm often too weak to lift more than a litre to pour from.)
And, to make this post less moany, I have some peaches. They were in a punnet to "ripen at home" and they should be ready to eat tomorrow, and they smell utterly fantastic. Even if I don't eat the whole punnet, who cares, they're making the flat smell gorgeous.
Saturday, July 22, 2006
The Philosophy Of Scooters
Thoughts that have occurred to me while trundling along, usually at 4mph.
You will get there eventually as long as you have enough charge in your battery.
Remember that your battery is finite. Keep an eye on it.
however
don't get so absorbed in watching the level of your battery that you forget to watch what is happening around you.
Examine the path ahead for dropped kerbs.
More speed, less range.
You need more juice to go up a hill than to go down it
however
if you go down a hill on the way there, you'll go up a hill on the way back.
You are not surgically attached to the scooter, and if it breaks down, you can call on another form of transport to help you out.
Sometimes you just can't avoid a pothole.
---------------------------
Sorry I haven't blogged of late. Whenever I've thought of anything to say, I haven't been at the laptop - and as soon as I am, I can't think of it anymore.
I'm back "home" now, where I can't have a scooter because I'm still on the council list to be put in accessible housing. Until such time as accessible housing is available, I am stuck here in my first-floor flat that I started living in well before I got ill. One thing about a first floor flat, you can't get a scooter up the stairs, and even if I could the flat is too small to have anywhere to put it. So I'm in housing that half the time is inaccessible to me because I can't manage the stairs to get in and out of the flat (I crawl up and down them if I really must go out and there's no one to help me). And then even once I've got up/down the stairs, I still have to then move around the environs of the town - without a scooter.
I really really hope I can just move in with Steve soon and tell the utterly hopeless council where to stick it.
In the meantime, I'll just consider myself very lucky to have certain resources that I do miss at Steve's house (although not so much that I want to stay here). The proximity of family and one or two friends is nice. Having the beach within tottering distance is nice. Having some little shops on the same block is nice. Having a semi-decent bus service is nice.
Special mention to James who got sobbed at down the phone today when I'd fallen over for the Nth time while trying to get myself more water. I was sore and bumped and frustrated, not to mention thirsty, and grrrr. And on a day like this I can't just opt to Not Drink As Much. But he did a sterling job of calming me down a bit, so yay James :)
You will get there eventually as long as you have enough charge in your battery.
Remember that your battery is finite. Keep an eye on it.
however
don't get so absorbed in watching the level of your battery that you forget to watch what is happening around you.
Examine the path ahead for dropped kerbs.
More speed, less range.
You need more juice to go up a hill than to go down it
however
if you go down a hill on the way there, you'll go up a hill on the way back.
You are not surgically attached to the scooter, and if it breaks down, you can call on another form of transport to help you out.
Sometimes you just can't avoid a pothole.
---------------------------
Sorry I haven't blogged of late. Whenever I've thought of anything to say, I haven't been at the laptop - and as soon as I am, I can't think of it anymore.
I'm back "home" now, where I can't have a scooter because I'm still on the council list to be put in accessible housing. Until such time as accessible housing is available, I am stuck here in my first-floor flat that I started living in well before I got ill. One thing about a first floor flat, you can't get a scooter up the stairs, and even if I could the flat is too small to have anywhere to put it. So I'm in housing that half the time is inaccessible to me because I can't manage the stairs to get in and out of the flat (I crawl up and down them if I really must go out and there's no one to help me). And then even once I've got up/down the stairs, I still have to then move around the environs of the town - without a scooter.
I really really hope I can just move in with Steve soon and tell the utterly hopeless council where to stick it.
In the meantime, I'll just consider myself very lucky to have certain resources that I do miss at Steve's house (although not so much that I want to stay here). The proximity of family and one or two friends is nice. Having the beach within tottering distance is nice. Having some little shops on the same block is nice. Having a semi-decent bus service is nice.
Special mention to James who got sobbed at down the phone today when I'd fallen over for the Nth time while trying to get myself more water. I was sore and bumped and frustrated, not to mention thirsty, and grrrr. And on a day like this I can't just opt to Not Drink As Much. But he did a sterling job of calming me down a bit, so yay James :)
Wednesday, July 12, 2006
My Beautiful Shiny Scooter
This blog entry has been a very long time coming. I've been feeling quite astoundingly awful and putting it off on the basis that "tomorrow I will be able to write an entry that will do it justice", but then tomorrow turns up and I feel even worse and am even less capable of coherent writing. The "Juicicles" entry is proof of this.
So anyway, I bought this scooter. It's the Cadiz, like I'd detailed previously, and it cost me £1,400, which is a lot less than the RRP for which I thank the lovely people at Leamington Shopmobility who don't screw customers over.
For readers who are interested in this sort of thing - I saved up for this out of my benefits money. You don't become disabled and have everything you need plonked in your lap for free. Because I have a lot of difficulty walking and am more or less housebound if I'm just reliant on my own power, I get a benefit called High Rate Mobility Disability Living Allowance which is supposed to cover all the costs to do with getting about that are incurred because I can't just walk places, can no longer cycle, and have a great deal of difficulty using the next cheapest mode of transport, the bus. How I use it is up to me. It could be taxis to and from a friend's house or it could be giving a friend some petrol money to take me shopping in their car or it could be to pay for Community Transport to take me to college (if I was at college) and it's also what you use to pay for a scooter or a motability car with hand controls and stuff like that. It has to stretch quite a way, really.
So, back to the scooter. Expensive, and only comes in red (maybe RMA got the paint cheap, maybe it's considered to be acceptable everywhere, I don't know). People see the colour and go "my gran's got one like that!" which pisses me off because I'm only 24! but Mark assures me it's unlikely their gran does have one like this. This is the spangly one with lights and suspension and EIGHT miles an hour, baby, which means I can drive it on the road as well as on the pavement if I do so wish.
Steve and I are already thinking modifications. The first was done quite quickly - we removed the original plastic faux-wicker basket and replaced it with a black metal one which looks much better. I mean, plastic faux-wicker, WHY? There's no good reason for it.
Modification Two is demonstrated here.
Further modifications being considered include a respray away from this Standardised Red, and Steve keeps wanting to put spikes on the front.
I am not having blue LEDs underneath, no way, no how.
But it's great having this. As long as I am having a good enough day to feel confident leaving the house on my own, I can leave the house on my own! OK so today I can't, as I can hardly stand, but that's not the point. If the milk has gone off, I don't have to wait for Steve to get home and try and persuade him to go to the shops - I can just go! If it's a beautiful day and I want to go to the park for a bit - I can! If I fancy an icecream - I can go get one! If I'm having a really good day and feel like looking round town, I don't have to pay £7 in taxi fares each way to be able to spend about an hour, maximum, looking about - I can trundle off at my leisure whenever I want to and I don't use up all my precious energy going from shop to shop!
As usual, click on the picture for biggererererer and to see more pictures.
So anyway, I bought this scooter. It's the Cadiz, like I'd detailed previously, and it cost me £1,400, which is a lot less than the RRP for which I thank the lovely people at Leamington Shopmobility who don't screw customers over.
For readers who are interested in this sort of thing - I saved up for this out of my benefits money. You don't become disabled and have everything you need plonked in your lap for free. Because I have a lot of difficulty walking and am more or less housebound if I'm just reliant on my own power, I get a benefit called High Rate Mobility Disability Living Allowance which is supposed to cover all the costs to do with getting about that are incurred because I can't just walk places, can no longer cycle, and have a great deal of difficulty using the next cheapest mode of transport, the bus. How I use it is up to me. It could be taxis to and from a friend's house or it could be giving a friend some petrol money to take me shopping in their car or it could be to pay for Community Transport to take me to college (if I was at college) and it's also what you use to pay for a scooter or a motability car with hand controls and stuff like that. It has to stretch quite a way, really.
So, back to the scooter. Expensive, and only comes in red (maybe RMA got the paint cheap, maybe it's considered to be acceptable everywhere, I don't know). People see the colour and go "my gran's got one like that!" which pisses me off because I'm only 24! but Mark assures me it's unlikely their gran does have one like this. This is the spangly one with lights and suspension and EIGHT miles an hour, baby, which means I can drive it on the road as well as on the pavement if I do so wish.
Steve and I are already thinking modifications. The first was done quite quickly - we removed the original plastic faux-wicker basket and replaced it with a black metal one which looks much better. I mean, plastic faux-wicker, WHY? There's no good reason for it.
Modification Two is demonstrated here.
Further modifications being considered include a respray away from this Standardised Red, and Steve keeps wanting to put spikes on the front.
I am not having blue LEDs underneath, no way, no how.
But it's great having this. As long as I am having a good enough day to feel confident leaving the house on my own, I can leave the house on my own! OK so today I can't, as I can hardly stand, but that's not the point. If the milk has gone off, I don't have to wait for Steve to get home and try and persuade him to go to the shops - I can just go! If it's a beautiful day and I want to go to the park for a bit - I can! If I fancy an icecream - I can go get one! If I'm having a really good day and feel like looking round town, I don't have to pay £7 in taxi fares each way to be able to spend about an hour, maximum, looking about - I can trundle off at my leisure whenever I want to and I don't use up all my precious energy going from shop to shop!
As usual, click on the picture for biggererererer and to see more pictures.
Monday, July 10, 2006
Juicicles
Get one small bottle of Tropicana Smooth Orange juice (or whatever your favourite is).
Put in freezer. Ta-da! Juicicle!
On hot days, enjoy taking one around with you, and having a resealable bottle containing a lump of lovely cold ice and juicy goodness. Mmmm, delicious.
Then on a cooler day, suddenly fancy some orange juice, and spend half an hour gazing at a frosty bottle, willing it to get to the drinkable stage.
Bumnuggets.
Put in freezer. Ta-da! Juicicle!
On hot days, enjoy taking one around with you, and having a resealable bottle containing a lump of lovely cold ice and juicy goodness. Mmmm, delicious.
Then on a cooler day, suddenly fancy some orange juice, and spend half an hour gazing at a frosty bottle, willing it to get to the drinkable stage.
Bumnuggets.
Sunday, July 02, 2006
Steve being wonderful
As some of you are no doubt aware, it's been a wee bit warm in central England the last couple of days. I like the sunshine as much as the next person, but I do prefer it to be accompanied by at least a little bit of a breeze. These temperatures are beyond a joke.
One of the symptoms of this charming illness is trouble regulating body temperature. Which means I'm one of the "at risk" groups who has to watch out. It would therefore have been nice if I'd been given this leaflet (pdf format) perhaps a month or so ago, before getting to the point where I desperately needed it.
Steve and I had spent most of today doing absolutely nothing, just lying on the bed and drinking water, with little bursts of using the computer or having a quick wash, but mostly just snoozing in the breeze from a nice big fan. Even so I had been getting lots of unusual *cramps*, particularly *weak muscles* and was even more *dizzy* than usual. I just notched it up to a bad day because of yesterday's busy-ness.
Eventually we decided that eating would be a good thing, and at about half five we went out to grab some food. On the way back I was getting even more *cramps* but decided not to worry. We got home and stuck a DVD on.
About 45 minutes into the DVD I started *shivering* and *convulsing*. I wasn't sure what was going on and was very *confused*.
Luckily Steve completely took over. He basically poured some water into me while trying to get me to tell him what I thought was going on (I didn't have a clue and was just burbling), then got me up the stairs to our room where the fan and everything is. He helped me out of my clothes, put me on the bed on my back, and then soaked a towel in cold water and put it over my front. As I started to settle, he went downstairs and got an ice pack out of the freezer which he rubbed over the towel to keep it cold. After a bit, he helped me to sit up and made me drink a glass of water, then lay me down on my front and put the towel on my back.
I started feeling better quite quickly, and within about twenty minutes I was lucid again and a bit more comfortable, although I'm still quite far from being 100% even by my usual standards.
Hopefully tomorrow will be a little cooler, but at least if it isn't I know what to watch out for now.
One of the symptoms of this charming illness is trouble regulating body temperature. Which means I'm one of the "at risk" groups who has to watch out. It would therefore have been nice if I'd been given this leaflet (pdf format) perhaps a month or so ago, before getting to the point where I desperately needed it.
Steve and I had spent most of today doing absolutely nothing, just lying on the bed and drinking water, with little bursts of using the computer or having a quick wash, but mostly just snoozing in the breeze from a nice big fan. Even so I had been getting lots of unusual *cramps*, particularly *weak muscles* and was even more *dizzy* than usual. I just notched it up to a bad day because of yesterday's busy-ness.
Eventually we decided that eating would be a good thing, and at about half five we went out to grab some food. On the way back I was getting even more *cramps* but decided not to worry. We got home and stuck a DVD on.
About 45 minutes into the DVD I started *shivering* and *convulsing*. I wasn't sure what was going on and was very *confused*.
Luckily Steve completely took over. He basically poured some water into me while trying to get me to tell him what I thought was going on (I didn't have a clue and was just burbling), then got me up the stairs to our room where the fan and everything is. He helped me out of my clothes, put me on the bed on my back, and then soaked a towel in cold water and put it over my front. As I started to settle, he went downstairs and got an ice pack out of the freezer which he rubbed over the towel to keep it cold. After a bit, he helped me to sit up and made me drink a glass of water, then lay me down on my front and put the towel on my back.
I started feeling better quite quickly, and within about twenty minutes I was lucid again and a bit more comfortable, although I'm still quite far from being 100% even by my usual standards.
Hopefully tomorrow will be a little cooler, but at least if it isn't I know what to watch out for now.
Burnt Offerings
On Saturday Steve and I had been invited to his friend Ed's housewarming barbecue. Steve lives just round the corner, so he'd agreed to help out with setting up. I in the meantime was over the road having an aromatherapy massage.
I hadn't quite thought that one through really - on the one hand, the massage meant that I was in more of a position to enjoy the afternoon properly, however the thing about aromatherapy oils is that you're supposed to leave them on for quite a while, not wash them off and apply sun cream. So I tried to find the middle ground by wiping away the excess oil from the parts of my skin that weren't covered, wearing long but thin trousers and a hat, and staying under the sunshade as much as I could get away with. I'm not burnt today so I must have got it about right.
It was a great party. Click on the picture to see more photos. There's a gap of about four hours where there are no photos, as I had gone back to Steve's to have a sleep, but at about 9pm I went back for another hour or so which was nice even if I was a bit spaced.
I hadn't quite thought that one through really - on the one hand, the massage meant that I was in more of a position to enjoy the afternoon properly, however the thing about aromatherapy oils is that you're supposed to leave them on for quite a while, not wash them off and apply sun cream. So I tried to find the middle ground by wiping away the excess oil from the parts of my skin that weren't covered, wearing long but thin trousers and a hat, and staying under the sunshade as much as I could get away with. I'm not burnt today so I must have got it about right.
It was a great party. Click on the picture to see more photos. There's a gap of about four hours where there are no photos, as I had gone back to Steve's to have a sleep, but at about 9pm I went back for another hour or so which was nice even if I was a bit spaced.
Friday, June 30, 2006
Job Offer
Last night Steve and I were at a focus group. There's a local cafe we like to go to, and the owner, David, is considering opening it in the evenings as a kind of wine bar or similar, and wanted to get ideas from people in our age group about what we want from a night out, what we don't want, how viable the concept would be and so on.
He's a really nice chap, so when he asked us if we'd come along, we agreed immediately - me for definite and Steve if he was out of work early enough. The additional promise of pizza, drinks and cake being provided had nothing to do with it, I swear.
The focus group itself went well. I think David got what he wanted out of it, and the participants managed a lot of intelligent but structured discussion. After about an hour I had to pull my chair away from the table and have some painkillers and sit with my head between my knees for a bit, doing breathing techniques, but after ten minutes or so I was able to come back and join in again, although I was definitely a little spaced.
Which was why I thought I might have been imagining it when David offered me a job.
Except everyone was looking at me. And I had to turn it down. I mean, can you imagine me waitressing?
"Certainly sir, one large coffee coming right up. Could you please come through to the kitchen and carry it through for me? Thank you so much."
"Yes madam, we do a range of hot and cold foods, but if you want something hot would you mind supervising me using the oven? That's awfully kind of you."
"Do take a seat, I'll come and get your order just as soon as I've managed to pick myself up off the floor..."
It was by quoting these scenarios with a smile on my face that I gently turned David's offer down. What had happened is that with my stick being on the floor, and with me participating in discussion with a group that included his other young staff members, he saw how I would fit in with the group and completely forgot about my physical limitations.
Can't see it working myself. And those little scenarios are even assuming I managed - each day I was due to work rather than when I happen to wake up having a good day - to get myself washed and brushed and made-up and dressed in an ironed uniform, get myself into town on time, and then work for a full shift. Even the taxis into town and back are £7 each way, I'd have to be able to work a minimum 3-hour shift to even turn a profit. Riding the scooter into town is for when I have lots and lots of time.
Thing is, it's one thing to resign yourself to not being able to work and therefore not seek work, and quite another to be offered a job and have to turn it down. Not a crappy job either - if I was healthy I would be happy to work for David as a waitress. Probably while looking for something that was more "career" than "job", but nevertheless, it would be preferable to being on the dole, or working somewhere soulless like McDonalds.
He's a really nice chap, so when he asked us if we'd come along, we agreed immediately - me for definite and Steve if he was out of work early enough. The additional promise of pizza, drinks and cake being provided had nothing to do with it, I swear.
The focus group itself went well. I think David got what he wanted out of it, and the participants managed a lot of intelligent but structured discussion. After about an hour I had to pull my chair away from the table and have some painkillers and sit with my head between my knees for a bit, doing breathing techniques, but after ten minutes or so I was able to come back and join in again, although I was definitely a little spaced.
Which was why I thought I might have been imagining it when David offered me a job.
Except everyone was looking at me. And I had to turn it down. I mean, can you imagine me waitressing?
"Certainly sir, one large coffee coming right up. Could you please come through to the kitchen and carry it through for me? Thank you so much."
"Yes madam, we do a range of hot and cold foods, but if you want something hot would you mind supervising me using the oven? That's awfully kind of you."
"Do take a seat, I'll come and get your order just as soon as I've managed to pick myself up off the floor..."
It was by quoting these scenarios with a smile on my face that I gently turned David's offer down. What had happened is that with my stick being on the floor, and with me participating in discussion with a group that included his other young staff members, he saw how I would fit in with the group and completely forgot about my physical limitations.
Can't see it working myself. And those little scenarios are even assuming I managed - each day I was due to work rather than when I happen to wake up having a good day - to get myself washed and brushed and made-up and dressed in an ironed uniform, get myself into town on time, and then work for a full shift. Even the taxis into town and back are £7 each way, I'd have to be able to work a minimum 3-hour shift to even turn a profit. Riding the scooter into town is for when I have lots and lots of time.
Thing is, it's one thing to resign yourself to not being able to work and therefore not seek work, and quite another to be offered a job and have to turn it down. Not a crappy job either - if I was healthy I would be happy to work for David as a waitress. Probably while looking for something that was more "career" than "job", but nevertheless, it would be preferable to being on the dole, or working somewhere soulless like McDonalds.
Tuesday, June 27, 2006
George
Meet George.
George is a coconut.
I don't like coconut. Steve doesn't like coconut. One might wonder, therefore, why we bought a coconut on Monday night in Tescos.
well, he looked cute. And he was only 38p. And we shall love him and cuddle him and call him George.
(click the picture for more photos)
George is a coconut.
I don't like coconut. Steve doesn't like coconut. One might wonder, therefore, why we bought a coconut on Monday night in Tescos.
well, he looked cute. And he was only 38p. And we shall love him and cuddle him and call him George.
(click the picture for more photos)
Scooter-Power!
On Monday I became properly independently mobile here at Steve's for the first time.
It's a very affluent area, and one of the symptoms of this seems to be that local shops are few and far between with few or no bus stops, as everyone has at least one car. The nearest local little shop of any description is a good fifteen minutes walk each way, even for a healthy person, which is beyond my capability. Therefore when I have been staying with Steve, I haven't so much as been able to go out for a pint of milk or a bar of chocolate, even on a good day.
However, Leamington does have a Shopmobility scheme, who will basically hire me a mid-range mobility scooter for a week for a sum of money roughly equal to my weekly high-rate mobility DLA, which seems perfectly fair to me! They spent some time doing a little training course with me, reversing round cones and all sorts, and after this week is up I can either return the scooter, give up and say goodbye; return the scooter and buy a shiny new one of my own; or not return the scooter, give them more money, and extend the hire for another week/month/whatever.
So far I have:
Driven home from the town centre (took nearly an hour)
Gone to the local shops to buy some things for dinner
Gone to post a letter
Had an explore around the district
And I plan to:
Go to the library
Go get a massage
Go for a drink
Have a haircut
Go to the shops again
Explore some more
I'm very definitely considering getting a Cadiz which is a couple of levels up from what I've got on rental at the moment. It has suspension (which after my excursions so far is a BIG selling point), a taller, comfier seat, goes up to twice as fast, and has comfier handles. I had a go on the showroom model at ShopMobility. There's a load more features too, indicator lights and stuff like that, but it's mostly faff - what I've listed is the main differences that make it worth paying more.
Scooters are expensive things, even a cheapey McCheap one costs several hundred pounds and one that is mid-range (4mph, 15 mile range) is upwards of £1,000. Savings can be made, but that has to be weighed against what you get for your money - for instance, you may save a couple of hundred pounds buying online, but can you call a local firm when something goes wrong?
There's still a fair bit of the week to go though, so we'll see how things pan out.
It's a very affluent area, and one of the symptoms of this seems to be that local shops are few and far between with few or no bus stops, as everyone has at least one car. The nearest local little shop of any description is a good fifteen minutes walk each way, even for a healthy person, which is beyond my capability. Therefore when I have been staying with Steve, I haven't so much as been able to go out for a pint of milk or a bar of chocolate, even on a good day.
However, Leamington does have a Shopmobility scheme, who will basically hire me a mid-range mobility scooter for a week for a sum of money roughly equal to my weekly high-rate mobility DLA, which seems perfectly fair to me! They spent some time doing a little training course with me, reversing round cones and all sorts, and after this week is up I can either return the scooter, give up and say goodbye; return the scooter and buy a shiny new one of my own; or not return the scooter, give them more money, and extend the hire for another week/month/whatever.
So far I have:
Driven home from the town centre (took nearly an hour)
Gone to the local shops to buy some things for dinner
Gone to post a letter
Had an explore around the district
And I plan to:
Go to the library
Go get a massage
Go for a drink
Have a haircut
Go to the shops again
Explore some more
I'm very definitely considering getting a Cadiz which is a couple of levels up from what I've got on rental at the moment. It has suspension (which after my excursions so far is a BIG selling point), a taller, comfier seat, goes up to twice as fast, and has comfier handles. I had a go on the showroom model at ShopMobility. There's a load more features too, indicator lights and stuff like that, but it's mostly faff - what I've listed is the main differences that make it worth paying more.
Scooters are expensive things, even a cheapey McCheap one costs several hundred pounds and one that is mid-range (4mph, 15 mile range) is upwards of £1,000. Savings can be made, but that has to be weighed against what you get for your money - for instance, you may save a couple of hundred pounds buying online, but can you call a local firm when something goes wrong?
There's still a fair bit of the week to go though, so we'll see how things pan out.
Sunday, June 25, 2006
My Grandfather Is Dead
He died in the early hours of this morning.
It was expected. He's been ill for decades, his heart and all sorts wrong with him, and then the last few months he's been in and out of hospital, intensive care units and isolation wards.
A week or so ago he was allowed home. Unfortunately he was completely wheelchair-bound, and "home" was a third-floor flat in a block with no lift, where the internal doors were too slim to admit a wheelchair - so that amounted to bedbound. I know my grandfather. He likes to walk in the forest and go to the shops to choose his own food. He was a very active and social person. Being bedbound would drive him utterly bananas, and at home would be worse than at hospital as at least at hospital there are other patients and doctors to chat to.
Mum says that he was expecting this and was prepared for it - all his paperwork and everything was in order and everything is set. The funeral is later this week, a church service, more for the religious members of the family than for him. He's requested no grave or anything like that, he doesn't want us travelling to Germany just to come look at a bit of stone.
When mum told me, my initial reaction was "well, that was expected", but that was probably because she'd built up the conversation - "Are you sitting down? Is Steve with you? I have some bad news...", I mean, there was only a limited number of things it could be. As she explained more about what had happened, about the time and about everything being prepared, I began to cry and I spent quite some time just crying, even after we'd hung up.
But since then I've been remembering lots of the great things my grandfather did with and for my sister and me, places we went, songs we sang, and so on. Recently we'd been writing letters to each other using automatic translation tools, but one sentence at a time, painstakingly trying to make sure it still made sense. I swear an old-fashioned paper Collins English/German dictionary would have been quicker and easier, but at least we could make each other laugh and we knew we cared.
I don't know what I'm supposed to do now, if I should be sending cards or flowers or anything to my grandmother or my mum or my uncle. I'm sort of at a loose end.
It was expected. He's been ill for decades, his heart and all sorts wrong with him, and then the last few months he's been in and out of hospital, intensive care units and isolation wards.
A week or so ago he was allowed home. Unfortunately he was completely wheelchair-bound, and "home" was a third-floor flat in a block with no lift, where the internal doors were too slim to admit a wheelchair - so that amounted to bedbound. I know my grandfather. He likes to walk in the forest and go to the shops to choose his own food. He was a very active and social person. Being bedbound would drive him utterly bananas, and at home would be worse than at hospital as at least at hospital there are other patients and doctors to chat to.
Mum says that he was expecting this and was prepared for it - all his paperwork and everything was in order and everything is set. The funeral is later this week, a church service, more for the religious members of the family than for him. He's requested no grave or anything like that, he doesn't want us travelling to Germany just to come look at a bit of stone.
When mum told me, my initial reaction was "well, that was expected", but that was probably because she'd built up the conversation - "Are you sitting down? Is Steve with you? I have some bad news...", I mean, there was only a limited number of things it could be. As she explained more about what had happened, about the time and about everything being prepared, I began to cry and I spent quite some time just crying, even after we'd hung up.
But since then I've been remembering lots of the great things my grandfather did with and for my sister and me, places we went, songs we sang, and so on. Recently we'd been writing letters to each other using automatic translation tools, but one sentence at a time, painstakingly trying to make sure it still made sense. I swear an old-fashioned paper Collins English/German dictionary would have been quicker and easier, but at least we could make each other laugh and we knew we cared.
I don't know what I'm supposed to do now, if I should be sending cards or flowers or anything to my grandmother or my mum or my uncle. I'm sort of at a loose end.
Friday, June 23, 2006
New Symptom
or, new manifestation of an old symptom...
CRAMP in the FACE.
This is Not Fun.
I get a lot of cramp anyway, all over the place. The pain level isn't so bad compared to the other pains I get, but it does tend to come on by surprise which is annoying. Thus far the worst place for it was in my back - the first couple of times that one happened I was terrified because I thought I couldn't breathe so I ended up having a panic attack on top of it. But in my face??? Why should my face get cramp? First thing in the morning?
I'm chalking it up as another reason why I should definitely have a baby - I can entertain it with funky facial expressions...
CRAMP in the FACE.
This is Not Fun.
I get a lot of cramp anyway, all over the place. The pain level isn't so bad compared to the other pains I get, but it does tend to come on by surprise which is annoying. Thus far the worst place for it was in my back - the first couple of times that one happened I was terrified because I thought I couldn't breathe so I ended up having a panic attack on top of it. But in my face??? Why should my face get cramp? First thing in the morning?
I'm chalking it up as another reason why I should definitely have a baby - I can entertain it with funky facial expressions...
Thursday, June 22, 2006
Moving Forwards
Steve and I have been talking and we've identified that I seem to be going through a patch of depression this month. I know it's true. I'm crying every day and I'm taking the tiniest comments out of all proportion and getting upset about them.
An example would be yesterday, I was on the phone to Pip, and he asked if Steve and I had set a date for me moving up here permanently. Happy Well-Balanced Mary would have taken that at face value and said "I don't know, but you're not rid of me just yet!" Depressed Mary, on the other hand, stammered out an "I don't know" and then spent some time regaling the ever-suffering Steve with theories about how Pip didn't like her any more and couldn't wait to be rid of her and so on and so on and so on...
Why am I depressed?
I don't know. I've got everything to be happy about. Loving boyfriend, sorted-out benefits situation, stable medications, enough to eat, everything I need really... But I keep wanting more. I want to be better, I want to be not in pain, I want to have a part-time job and money I earn, I want lots of friends I can go and have a cup of tea with.
I want lots of things!
What can I do about it?
I also don't know.
While Steve was out earlier, he went to Leamington Shopmobility and got some leaflets and information. It's possible to rent mobility scooters from them by the week, so we're thinking that we might give that a go, see how much real difference it makes and which sort works best for me and how much more freedom it gives me here. I also want to go to a local ME support group up here to see what other people have in place. I'd like to have a social worker, and join a club, maybe an art group or something, or try to do a one-hour-a-week college course, but I can't do any of those things while I'm spending *most* of my time at home but a fair chunk of time up here, with a view to moving up here as soon as Steve feels ready.
For now, I'm just happy that Steve and I are cuddling each other and trying to think about how we can sort stuff out. Talking and identifying problems and trying to sort them out, rather than dwelling on them until they become huge.
Also we had a lovely late lunch of a picnic in the garden, and then we napped, and then we weren't hungry for any dinner so I had a cream apple turnover for supper. Life seems better already.
An example would be yesterday, I was on the phone to Pip, and he asked if Steve and I had set a date for me moving up here permanently. Happy Well-Balanced Mary would have taken that at face value and said "I don't know, but you're not rid of me just yet!" Depressed Mary, on the other hand, stammered out an "I don't know" and then spent some time regaling the ever-suffering Steve with theories about how Pip didn't like her any more and couldn't wait to be rid of her and so on and so on and so on...
Why am I depressed?
I don't know. I've got everything to be happy about. Loving boyfriend, sorted-out benefits situation, stable medications, enough to eat, everything I need really... But I keep wanting more. I want to be better, I want to be not in pain, I want to have a part-time job and money I earn, I want lots of friends I can go and have a cup of tea with.
I want lots of things!
What can I do about it?
I also don't know.
While Steve was out earlier, he went to Leamington Shopmobility and got some leaflets and information. It's possible to rent mobility scooters from them by the week, so we're thinking that we might give that a go, see how much real difference it makes and which sort works best for me and how much more freedom it gives me here. I also want to go to a local ME support group up here to see what other people have in place. I'd like to have a social worker, and join a club, maybe an art group or something, or try to do a one-hour-a-week college course, but I can't do any of those things while I'm spending *most* of my time at home but a fair chunk of time up here, with a view to moving up here as soon as Steve feels ready.
For now, I'm just happy that Steve and I are cuddling each other and trying to think about how we can sort stuff out. Talking and identifying problems and trying to sort them out, rather than dwelling on them until they become huge.
Also we had a lovely late lunch of a picnic in the garden, and then we napped, and then we weren't hungry for any dinner so I had a cream apple turnover for supper. Life seems better already.
Afternoon Out
Wednesday afternoon we planned to spend with a couple of friends who had also booked the time off work. We figured that if the weather was good, we'd go to Burton Dassett country park for a picnic, and if not, we'd go for a pub lunch somewhere.
The weather seemed a bit hit and miss so we opted for the pub lunch. We went to a nice, fairly upmarket place called The Woodhouse which had really nice gardens and did nice food too. It's just as well the gardens were nice, as they had no readily available disabled access and I was feeling so rotten I had to be in the chair. They had one ramp, but that led to a locked door with curtains across it and no bell or anything, and there were no "please call for disabled assistance" buttons by any of the stairs into the pub either. Still, I was lucky enough to not be on my own, so we sat outside and the others went in to order the food, and I just tried not to drink too much and end up needing the loo.
After lunch, we decided to go to Burton Dassett after all. It was a nice drive, and then we got out and Steve had brought a folding chair for me to sit in. The others had immediately run up the nearest hill, so I decided to join in and with Steve on one side and my stick on the other we took the easiest route up the hill (with a couple of breaks) and set up the chair in what seemed to be the least windy spot, in the lee of a stone turret.
At first it was all very nice and idyllic. Beautiful scenery, happy friends, loving boyfriend. We put the kite together and tried to launch it but the turret was playing havoc with the wind currents.
Which is why they all wandered off.
I tried to get out of the chair to follow them, but I couldn't. I was stuck. And even if I had got out of the chair, I'd have been staggering and collapsing and making Steve worry, and I know he doesn't like thinking about me being disabled, he'd prefer it if I seemed as normal as possible and kept as safe as possible.
He kept coming back to me every so often, and if anything that made me feel worse - like a great big useless anchor, dragging on him and stopping him from doing what he wanted to do. Then he was coming back less and less. Half the time I couldn't even see them any more from where I'd been deposited.
I don't know how long we spent on the hill. I know it was 2pm when we ate lunch and 5.30pm when we finally got back in the cars and left Burton Dassett. I was getting more and more tired, I was getting colder and colder, I was slumped in the folding chair and the wind had come round and was whipping my face with my hair and that's probably a good thing as it gave me cover for the crying.
Steve and the others came back eventually, and by all accounts they'd had fun. I'd pretty much cramped up in position in the chair and needed help getting out of it, then Steve helped me down the hill again which involved severe pain, lots of tears and several rests. I was praying that I could just be folded into the car and go but I really must learn to say those things out loud, as praying doesn't work.
Since we were all together again, I tried to join in again by throwing a frisbee, but even with the help of the wind my arms were so weak that I only managed to make it go a metre or so, which got me summarily laughed at. Didn't matter, I couldn't have crumpled up in on myself any more than I already had.
I ended up sitting on the grass as I couldn't balance on the bench, then I ended up crawling towards the car as I couldn't walk at which point it was considered funny to put things on my back without me noticing and snigger at me.
Yeah, hilarious.
I think Steve had a reasonably good time, but I think both of us would have had a better time if I'd been a good little crip and stayed at home in bed. Maybe I'm just fooling myself to think that I can integrate.
The weather seemed a bit hit and miss so we opted for the pub lunch. We went to a nice, fairly upmarket place called The Woodhouse which had really nice gardens and did nice food too. It's just as well the gardens were nice, as they had no readily available disabled access and I was feeling so rotten I had to be in the chair. They had one ramp, but that led to a locked door with curtains across it and no bell or anything, and there were no "please call for disabled assistance" buttons by any of the stairs into the pub either. Still, I was lucky enough to not be on my own, so we sat outside and the others went in to order the food, and I just tried not to drink too much and end up needing the loo.
After lunch, we decided to go to Burton Dassett after all. It was a nice drive, and then we got out and Steve had brought a folding chair for me to sit in. The others had immediately run up the nearest hill, so I decided to join in and with Steve on one side and my stick on the other we took the easiest route up the hill (with a couple of breaks) and set up the chair in what seemed to be the least windy spot, in the lee of a stone turret.
At first it was all very nice and idyllic. Beautiful scenery, happy friends, loving boyfriend. We put the kite together and tried to launch it but the turret was playing havoc with the wind currents.
Which is why they all wandered off.
I tried to get out of the chair to follow them, but I couldn't. I was stuck. And even if I had got out of the chair, I'd have been staggering and collapsing and making Steve worry, and I know he doesn't like thinking about me being disabled, he'd prefer it if I seemed as normal as possible and kept as safe as possible.
He kept coming back to me every so often, and if anything that made me feel worse - like a great big useless anchor, dragging on him and stopping him from doing what he wanted to do. Then he was coming back less and less. Half the time I couldn't even see them any more from where I'd been deposited.
I don't know how long we spent on the hill. I know it was 2pm when we ate lunch and 5.30pm when we finally got back in the cars and left Burton Dassett. I was getting more and more tired, I was getting colder and colder, I was slumped in the folding chair and the wind had come round and was whipping my face with my hair and that's probably a good thing as it gave me cover for the crying.
Steve and the others came back eventually, and by all accounts they'd had fun. I'd pretty much cramped up in position in the chair and needed help getting out of it, then Steve helped me down the hill again which involved severe pain, lots of tears and several rests. I was praying that I could just be folded into the car and go but I really must learn to say those things out loud, as praying doesn't work.
Since we were all together again, I tried to join in again by throwing a frisbee, but even with the help of the wind my arms were so weak that I only managed to make it go a metre or so, which got me summarily laughed at. Didn't matter, I couldn't have crumpled up in on myself any more than I already had.
I ended up sitting on the grass as I couldn't balance on the bench, then I ended up crawling towards the car as I couldn't walk at which point it was considered funny to put things on my back without me noticing and snigger at me.
Yeah, hilarious.
I think Steve had a reasonably good time, but I think both of us would have had a better time if I'd been a good little crip and stayed at home in bed. Maybe I'm just fooling myself to think that I can integrate.
Tuesday, June 20, 2006
Scaring Mr Stevie
Today has been one of Those Days. You know the ones. I think it's probably because of the weather - it finally persisted it down this afternoon/evening, and changes in the weather always affect me quite a bit. Anyway, whatever the cause, I haven't been able to nap properly, I've been really stressed and restless and jumpy and getting fretful about the tiniest, stupidest little things, and that probaby contributed to what happened this evening.
Steve and I decided to pop out to Frankie & Benny's for dinner, which is something we do on a fairly regular basis when neither of us is really up to cooking and we're not looking to do the whole "dress up a bit and go to a nice restaurant" thing, we just want a hot meal and one up from a McDonalds. The meal itself was disappointing tonight, it was practically swimming in grease, but at least the staff are nice and friendly.
By the time we'd finished eating, I was at the end of my endurance, feeling really dizzy and looking forward to going home. Steve helped me up and we left the restaurant, the car was parked just a few metres from the door. But in those few metres the cool air hit me.
I collapsed.
I collapsed right onto the hard, cold, wet, dirty paving of the carpark.
Ow. Yuk. Shiver. Ow.
I didn't realise until tonight that Steve hasn't seen me collapse outside before. He's seen it happen indoors, but not outdoors, and for some reason it scared him more. I suppose there are advantages and disadvantages to each. Indoors is more likely to be warm, clean, dry, comfortable, familiar, with carpets and seats and so on and less passing cars. There's also a degree of privacy. Outdoors however, there's less objects with sharp corners to bash yourself on, there's often a handy passer-by to offer assistance if you're by yourself, and it's not *always* cold and wet.
Of the two, indoors is preferable, but outdoors isn't that hugely different except the bruising may be a bit worse. It's really shaken Steve though, and I don't know how to make it better for him.
Things are just all aargh in my head right now.
Steve and I decided to pop out to Frankie & Benny's for dinner, which is something we do on a fairly regular basis when neither of us is really up to cooking and we're not looking to do the whole "dress up a bit and go to a nice restaurant" thing, we just want a hot meal and one up from a McDonalds. The meal itself was disappointing tonight, it was practically swimming in grease, but at least the staff are nice and friendly.
By the time we'd finished eating, I was at the end of my endurance, feeling really dizzy and looking forward to going home. Steve helped me up and we left the restaurant, the car was parked just a few metres from the door. But in those few metres the cool air hit me.
I collapsed.
I collapsed right onto the hard, cold, wet, dirty paving of the carpark.
Ow. Yuk. Shiver. Ow.
I didn't realise until tonight that Steve hasn't seen me collapse outside before. He's seen it happen indoors, but not outdoors, and for some reason it scared him more. I suppose there are advantages and disadvantages to each. Indoors is more likely to be warm, clean, dry, comfortable, familiar, with carpets and seats and so on and less passing cars. There's also a degree of privacy. Outdoors however, there's less objects with sharp corners to bash yourself on, there's often a handy passer-by to offer assistance if you're by yourself, and it's not *always* cold and wet.
Of the two, indoors is preferable, but outdoors isn't that hugely different except the bruising may be a bit worse. It's really shaken Steve though, and I don't know how to make it better for him.
Things are just all aargh in my head right now.
Monday, June 19, 2006
Holiday, Part II
Last time Steve renewed his contract he insisted on being able to take two weeks of holiday. Management were appalled at this demand, but they want to hang on to him (I wish he realised how much they need him) so they negotiated that he could have two weeks as long as they weren't two consecutive weeks. So, we had the first week at the beginning of June (when we went to the hotel), and now we're having the second week.
Steve came to pick me up at the weekend. I really didn't want to stay at home any longer than I had to. There's stuff going on that I don't especially want to blog about, the short version is that it's easier for everyone if I'm out of the way. That sounds like a really stupid emo kiddie sentence, nobody wants me, I'm going to go and eat worms... it's not like that. I'm wanted and I'm loved, there are just certain tensions that could do without me hanging around town and fanning the flames by the sheer fact of my presence.
So, here I am in Warwickshire again at Steve's house. Poor bloke, he's knackered. There's this muppet from his work who keeps ringing him for the most inane reasons. The last answerphone message I heard was left on Saturday and was asking "which brand of Leatherman do you think I should get?" Seriously, he deems this worth interrupting someone's holiday time for?
We spent much of today in bed asleep, but by mid-afternoon we decided to venture forth and look into this mobility scooter malarkey. The Active Mobility shop had a sign on the door saying they'd be back in ten minutes, so we went round the corner in search of the first little cafe or similar we could find... and we're glad we did.
I can't remember the name of it, but we Will go back and I will try to remember to make a note of it. Fantastic little cafe. Steve had coffee (a proper cafetiere of proper coffee) and I had tea (a proper china teapot of proper leaf tea) complete with sugar lumps and so on and so forth, and we each had a scone with butter and jam. Steve doesn't even like scones and jam as a rule, but he figured this place would do it properly and he wasn't disappointed. Lovely and fresh and gorgeous. The staff were amazing too. There was an old man who seemed to be the owner/manager, who was very friendly and chatty, but the twenty-something waitress was just as polite and friendly and you don't often get that.
From what we gathered, the man hires waitresses knowing full well they don't want to do waitressing forever, and he actively encourages them to apply for jobs that are more the sort of thing they've studied or trained for, or that they aspire to. We reckon this "mentoring" attitude is what makes his staff happy to work there in the meantime, and therefore leads to such exceptionally good performance.
In a very happy mood, we went back to Active Mobility, but unfortunately we didn't have much joy. Steve thinks the woman was being paid on commission as she was steering me towards whatever was more expensive that fitted in with the criteria I was after, rather than what Steve could see that was more likely to suit me and my needs.
Steve also admitted (after we had left) that he didn't think he'd be able to lift the bits of a disassembled scooter into the back of the car. I reckon there's no knowing unless you try - after all, those things are designed to make it easy - but it is something to take into account that I hadn't really thought of, I tend to just think of Steve as "stronger than me" and leave it at that. Perhaps I do have to forget it. But I don't want to - a scooter would give me so much freedom back.
However, it wasn't the time to discuss it - we were both knackered again and we had to refuel the car and get home before the major rush hour traffic started. Home, bed, sleep, wake up about 9pm, swallow a load of tablets, somehow order pizza between the two of us, hang about online and hope that we both feel better tomorrow.
Steve came to pick me up at the weekend. I really didn't want to stay at home any longer than I had to. There's stuff going on that I don't especially want to blog about, the short version is that it's easier for everyone if I'm out of the way. That sounds like a really stupid emo kiddie sentence, nobody wants me, I'm going to go and eat worms... it's not like that. I'm wanted and I'm loved, there are just certain tensions that could do without me hanging around town and fanning the flames by the sheer fact of my presence.
So, here I am in Warwickshire again at Steve's house. Poor bloke, he's knackered. There's this muppet from his work who keeps ringing him for the most inane reasons. The last answerphone message I heard was left on Saturday and was asking "which brand of Leatherman do you think I should get?" Seriously, he deems this worth interrupting someone's holiday time for?
We spent much of today in bed asleep, but by mid-afternoon we decided to venture forth and look into this mobility scooter malarkey. The Active Mobility shop had a sign on the door saying they'd be back in ten minutes, so we went round the corner in search of the first little cafe or similar we could find... and we're glad we did.
I can't remember the name of it, but we Will go back and I will try to remember to make a note of it. Fantastic little cafe. Steve had coffee (a proper cafetiere of proper coffee) and I had tea (a proper china teapot of proper leaf tea) complete with sugar lumps and so on and so forth, and we each had a scone with butter and jam. Steve doesn't even like scones and jam as a rule, but he figured this place would do it properly and he wasn't disappointed. Lovely and fresh and gorgeous. The staff were amazing too. There was an old man who seemed to be the owner/manager, who was very friendly and chatty, but the twenty-something waitress was just as polite and friendly and you don't often get that.
From what we gathered, the man hires waitresses knowing full well they don't want to do waitressing forever, and he actively encourages them to apply for jobs that are more the sort of thing they've studied or trained for, or that they aspire to. We reckon this "mentoring" attitude is what makes his staff happy to work there in the meantime, and therefore leads to such exceptionally good performance.
In a very happy mood, we went back to Active Mobility, but unfortunately we didn't have much joy. Steve thinks the woman was being paid on commission as she was steering me towards whatever was more expensive that fitted in with the criteria I was after, rather than what Steve could see that was more likely to suit me and my needs.
Steve also admitted (after we had left) that he didn't think he'd be able to lift the bits of a disassembled scooter into the back of the car. I reckon there's no knowing unless you try - after all, those things are designed to make it easy - but it is something to take into account that I hadn't really thought of, I tend to just think of Steve as "stronger than me" and leave it at that. Perhaps I do have to forget it. But I don't want to - a scooter would give me so much freedom back.
However, it wasn't the time to discuss it - we were both knackered again and we had to refuel the car and get home before the major rush hour traffic started. Home, bed, sleep, wake up about 9pm, swallow a load of tablets, somehow order pizza between the two of us, hang about online and hope that we both feel better tomorrow.
Sunday, June 18, 2006
Not sure how I feel about this
New Scientist article
Thanks to The Goldfish for this link.
I've always been very focused on "well, ME/CFS is a bugger, but at least it can't kill me..."
May add more to this post later.
Thanks to The Goldfish for this link.
I've always been very focused on "well, ME/CFS is a bugger, but at least it can't kill me..."
May add more to this post later.
Saturday, June 17, 2006
Mobility
I got my blue badge through today, which is impressive since I only sent off the application seven days ago! This is the difference between Suffolk County Council (efficient) and Waveney District Council (cause me no end of problems), I suppose.
I don't actually have a car or a driving license. I was saving up for lessons when I got ill, now I feel it would be irresponsible of me to try to drive in the state I'm in. I have enough trouble with my traffic awareness to cross a road on foot. I have vision problems. I have mental absences and sometimes pass out entirely. I get terrible headaches at a moment's notice. I have painful muscular spasms. I simply do not have the mental capacity and concentration to safely operate a ton of glass and metal, filled with combustible upholstery and highly flammable fuel plus an ignition source, at speed, through residential areas. It would not be safe for me or for anyone around me.
This is a part of why, even if I get a scooter of my own, I will still need my wheelchair for the days when I must go out but am not up to controlling the scooter safely. A scooter is a lot safer than a car - slower, smaller, stops as soon as you're not squeezing the lever - but I still found that yesterday I was getting extremely tired after a while just from the concentration needed to manouvere it, not run people over, not crash into things...
Plus, and Pip laughed at me for this, my wrist and thumb were really really getting tired. That's a valid laugh since he had two and a half stone of toddler asleep on his back and was also quite tired, but my point remains. I am not always going to be up to operating a vehicle, even a mini-vehicle.
That was one of the things I liked about the Tramper. It had a joystick with what they called an "umbilical cord" so another person could take over control of it while walking alongside, if the rider wasn't up to it. However at £5,350 plus extra for accessories, and being just way too big really, I've decided I don't want a Tramper after all. I'd much prefer something like I rode the other day. I'll also want to take The Goldfish's advice and try a powerchair.
I really think I want some kind of powered transport though. It was amazing, being independently mobile without the pain and exhaustion. I had to go into town here yesterday to go to the bank, and I had to do that walking with the stick, and within minutes of getting off the bus I was thinking "want a scooter, want a scooter, want a scooter..."
I don't actually have a car or a driving license. I was saving up for lessons when I got ill, now I feel it would be irresponsible of me to try to drive in the state I'm in. I have enough trouble with my traffic awareness to cross a road on foot. I have vision problems. I have mental absences and sometimes pass out entirely. I get terrible headaches at a moment's notice. I have painful muscular spasms. I simply do not have the mental capacity and concentration to safely operate a ton of glass and metal, filled with combustible upholstery and highly flammable fuel plus an ignition source, at speed, through residential areas. It would not be safe for me or for anyone around me.
This is a part of why, even if I get a scooter of my own, I will still need my wheelchair for the days when I must go out but am not up to controlling the scooter safely. A scooter is a lot safer than a car - slower, smaller, stops as soon as you're not squeezing the lever - but I still found that yesterday I was getting extremely tired after a while just from the concentration needed to manouvere it, not run people over, not crash into things...
Plus, and Pip laughed at me for this, my wrist and thumb were really really getting tired. That's a valid laugh since he had two and a half stone of toddler asleep on his back and was also quite tired, but my point remains. I am not always going to be up to operating a vehicle, even a mini-vehicle.
That was one of the things I liked about the Tramper. It had a joystick with what they called an "umbilical cord" so another person could take over control of it while walking alongside, if the rider wasn't up to it. However at £5,350 plus extra for accessories, and being just way too big really, I've decided I don't want a Tramper after all. I'd much prefer something like I rode the other day. I'll also want to take The Goldfish's advice and try a powerchair.
I really think I want some kind of powered transport though. It was amazing, being independently mobile without the pain and exhaustion. I had to go into town here yesterday to go to the bank, and I had to do that walking with the stick, and within minutes of getting off the bus I was thinking "want a scooter, want a scooter, want a scooter..."
Subscribe to:
Posts (Atom)
