Our favourite cafe here in Leamington is Victorias, at 95 Warwick Street. We discovered it quite by accident. There was a particular shop we wanted to go to, we got there, there was a sign on the door saying "back in 20 minutes", so we decided to walk round the corner towards the main shopping centre and get a cup of tea in the first place we came to. We were expecting a Subway or a Cafe Nero, instead we spotted Victorias.
+++++ Warning! Advertisement! Blog entry continues below.++++
It's a proper, traditional tea room/coffee shop. You are greeted and invited to take a seat, anywhere you like. The staff are neatly dressed, polite, friendly, and unlike Starbucks or Druckers, they are attentive without crowding you, and efficient without rushing you. Tea, whichever variety you choose, is leaf tea served in a proper china teapot, and coffee (all sorts of varieties, ground on the premises) is in a glass cafetiere. It's all done properly.
They get involved in local projects, for instance the recent Warwick Arts Week, and it isn't unusual to go in and find the "resident" artist sitting by the window painting, or a professional storyteller, or a nutritionist available for free consultations (a calendar of these things is kept on one wall but I like surprises).
On a more up-to-date level, David (the owner) also owns the upstairs which he hires out as meeting rooms, with the cafe providing refreshments. He set up wireless internet access which covers the whole building at a very reasonable rate too.
And the cake. Oh boy, the cake. When mum asked me to sort out her wedding cake, and I knew she wanted something that would taste GOOD rather than three tiers of alcoholic fruit cake in inch-thick white icing, I went to Victorias and David gave me the phone so I could call the lady who makes his cakes.
++++++ End Of Advertisement++++++
You get the idea. It's a wonderful cafe.
So anyway, I was in town the other day, on the scooter, and pottering about as one does. I parked the scooter and pottered into Waterstones. The downstairs is mainly the kids section but, hurrah for them, they have a lift going upstairs, so upstairs I did go. Unfortunately going up in the lift I just drained. By the time the door opened, a ghost-white Mary staggered out and sunk to one knee.
Understandably this alarmed the upstairs staff a little, luckily I was able to reassure them, and after sitting down for a minute or two and drinking a bit of water (why does it always make people around me feel better if I drink some water?) they were happy to let me get back in the lift and go back downstairs.
I sat on my scooter for a bit and pondered my options. I wasn't really in a fit state to drive anywhere much. Victorias was just down the road. They know me. They know I am ill. They have had many conversations with me and know I am sensible. I turned the speed on the scooter down a bit, just to be extra safe - I would rather people got annoyed with me for going slowly than for running over their toes - and trundled off.
If Victorias hadn't been nearby, I'd have pulled into an alley to rest. But alleys don't have comfortable surroundings and tea.
I pulled up outside and somehow managed to organise my legs into getting me into the cafe. Alex, a lovely girl about my age or maybe a bit younger, helped me to my preferred table, a nice quiet out-of-the-way corner without too much direct light. Did I want my usual tea? Yes please. Then it occurred to me, I had to eat something before taking my painkillers. I picked up the menu but the text was all blurred, I couldn't even tell if I had it the right way up or not. Alex saw me turning the menu around and asked if I wanted something to eat. I said I just needed something before my pills, like maybe a bit of bread and butter. Alex told me Kate was in charge that day and she'd go ask her.
The picture above shows what I was given. A warm, buttered ciabatta, some crisps, and a small leaf salad with some cherry tomatos and grapes.
Furthermore, as I found out the next time I went in, Kate asked all the staff to keep an extra eye on me that afternoon as I wasn't feeling well. I did wonder why the four of them seemed to be having a rotating break that consisted of reading the paper a couple of tables away from me. I laid my head down on the table for a bit once, as a wave of headache washed over me, and raised my head again to see this and Kate saying "you don't have to have these if you don't want to, but I think it might do you some good."
She was right, and after about an hour of peace and quiet, an opportunity to do some breathing techniques, some food inside me and some sugary drink, I was in a fit enough state to get home safely.
I have no idea how much they charged me for any of these extras or even if they did. I know when I left I handed over a fiver and then put the change I was given straight into the tips bowl.
Starbucks wouldn't have looked after me anything like as well.
Thursday, August 31, 2006
Wednesday, August 30, 2006
Lack Of Posting
Please excuse my lack of posting.
You remember the fits?
Well, they're still happening. I've been referred back to Neurology, but apparently there is a teeny-weeny (less than 0.5%) chance that they could have something to do with a reaction to the antidepressants I have been taking, Cipramil.
I wasn't taking much, they just put me on a half-dose (10mg as opposed to the standard 20mg) when I got ill, to try and cushion the somewhat inevitable upset of losing my job, my income, my hobbies, my mobility, my lifestyle, the friends that went with each of those things (except for the core of "real" friends who could accept my new limitations), and exchanging it all for 24/7 pain.
This seemed very sensible, and indeed it seemed to work.
Except fits are bad. It can only be a matter of time before I have one at the top of the stairs, or in the kitchen with a knife in my hand, or out and about at a busy road. At best I will find myself carted off to hospital and have a lot of inconvenience to deal with, at worst we could be looking at some real damage occurring.
With this in mind, I fully agreed to come off the antidepressants. It's not the best time for it, things are kind of up in the air, Steve's work, mum's wedding, plus the fact that the fits themselves are rather stressful... but getting off the damn things seemed to be a matter of urgency, and hey, I'm a fairly sorted-out, confident kind of person, so as per the doctor's directions I spent two weeks taking them every other day and I'm now not taking them at all.
And Oh Sweet Jesus. It is not good. I don't just feel "depressed". We're talking about mood swings, full-blown paranoia (Steve is getting it in the ear with stuff like "you're saying you don't want breakfast because you don't want me to have breakfast, because you think I'm fat!", I mean what sort of logic is that?), hallucinations, panic attacks for no reason I can figure out, sweats, shivers, bursting into tears because my biro doesn't work...
So anyway, this in mind, please let me off for not posting a lot. I'm trying to write a nice one...
Apparently I can expect withdrawal to last anywhere between two and four weeks.
You remember the fits?
Well, they're still happening. I've been referred back to Neurology, but apparently there is a teeny-weeny (less than 0.5%) chance that they could have something to do with a reaction to the antidepressants I have been taking, Cipramil.
I wasn't taking much, they just put me on a half-dose (10mg as opposed to the standard 20mg) when I got ill, to try and cushion the somewhat inevitable upset of losing my job, my income, my hobbies, my mobility, my lifestyle, the friends that went with each of those things (except for the core of "real" friends who could accept my new limitations), and exchanging it all for 24/7 pain.
This seemed very sensible, and indeed it seemed to work.
Except fits are bad. It can only be a matter of time before I have one at the top of the stairs, or in the kitchen with a knife in my hand, or out and about at a busy road. At best I will find myself carted off to hospital and have a lot of inconvenience to deal with, at worst we could be looking at some real damage occurring.
With this in mind, I fully agreed to come off the antidepressants. It's not the best time for it, things are kind of up in the air, Steve's work, mum's wedding, plus the fact that the fits themselves are rather stressful... but getting off the damn things seemed to be a matter of urgency, and hey, I'm a fairly sorted-out, confident kind of person, so as per the doctor's directions I spent two weeks taking them every other day and I'm now not taking them at all.
And Oh Sweet Jesus. It is not good. I don't just feel "depressed". We're talking about mood swings, full-blown paranoia (Steve is getting it in the ear with stuff like "you're saying you don't want breakfast because you don't want me to have breakfast, because you think I'm fat!", I mean what sort of logic is that?), hallucinations, panic attacks for no reason I can figure out, sweats, shivers, bursting into tears because my biro doesn't work...
So anyway, this in mind, please let me off for not posting a lot. I'm trying to write a nice one...
Apparently I can expect withdrawal to last anywhere between two and four weeks.
Thursday, August 17, 2006
Fundraising
Not much is known about ME and more research is needed into causes, diagnostics, management of the condition, drug control and possible cures. However it's not a killer (not widely at least) and research funding is hard to come by.
Every so often I get an email from an ME group I belong to. Here's the most recent:
On the 1st of September Simon Winnall and Ian Winstanley embark on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m. Simon and Ian funded the trip themselves, so all money raised will help fund the ME Research UK research programme. Simon's sister, Nikki Winnall, has suffered from severe ME for the last 8 years and is currently bed-bound with bouts of total paralysis, hence their wish to use the expedition to raise funds for research. As Simon says, "When Nikki was fit she used to love the mountains; she once walked from North to South Wales to raise money for Great Ormond Street Hospital. I hope by attempting to climb Mount Kilimanjaro we can raise funds and the profile of ME research." They expect that the climb will take 6 days, with the main challenge coming from the extreme altitude since there is only half the air to breath at the summit compared with sea level.
You can sponsor them by visiting their own webpage to download a sponsorship form, or you can sponsor them online via their own justgiving page www.justgiving.com/winnall . The guys will post a Kilimanjaro blog once they return so you can read about their adventures.
Steve looked across and said "oh, my mum's done that".
So let's not pretend these guys are doing something amazing by "funding the trip themselves" and struggling bravely up the mountain against all the odds to selflessly raise money for the poor, pathetic bedbound sister (get those violins going). It's two lads going on a fun holiday, with an aim to do something that grandmothers can do. BUT it is damn good of them to think of using their holiday jaunt to try and raise money to help people like Nikki, and I hope they do well.
I also hope they take lots of photos for her, and try not to make her be too pathetically grateful about whatever they raise.
Every so often I get an email from an ME group I belong to. Here's the most recent:
On the 1st of September Simon Winnall and Ian Winstanley embark on a great expedition to North-East Tanzania to climb Mount Kilimanjaro, the highest peak in Africa at 5,895 m. Simon and Ian funded the trip themselves, so all money raised will help fund the ME Research UK research programme. Simon's sister, Nikki Winnall, has suffered from severe ME for the last 8 years and is currently bed-bound with bouts of total paralysis, hence their wish to use the expedition to raise funds for research. As Simon says, "When Nikki was fit she used to love the mountains; she once walked from North to South Wales to raise money for Great Ormond Street Hospital. I hope by attempting to climb Mount Kilimanjaro we can raise funds and the profile of ME research." They expect that the climb will take 6 days, with the main challenge coming from the extreme altitude since there is only half the air to breath at the summit compared with sea level.
You can sponsor them by visiting their own webpage to download a sponsorship form, or you can sponsor them online via their own justgiving page www.justgiving.com/winnall . The guys will post a Kilimanjaro blog once they return so you can read about their adventures.
Steve looked across and said "oh, my mum's done that".
So let's not pretend these guys are doing something amazing by "funding the trip themselves" and struggling bravely up the mountain against all the odds to selflessly raise money for the poor, pathetic bedbound sister (get those violins going). It's two lads going on a fun holiday, with an aim to do something that grandmothers can do. BUT it is damn good of them to think of using their holiday jaunt to try and raise money to help people like Nikki, and I hope they do well.
I also hope they take lots of photos for her, and try not to make her be too pathetically grateful about whatever they raise.
Monday, August 14, 2006
Went to the park
With Pip and the Littlun, Mon 7th August. Mostly, they ran round and I took pictures. It was fantastic until it started to rain and we had to go home. This picture is of them on the little roundabout, Pip is actually propelling it by pedalling furiously on these teeny-weeny little pedals and they're both laughing their heads off. I took a video of it as well as the photos. Very cute.
I think when I have a child, a good master plan might be to find a local teenager I can bribe to come to the park with us a couple of times a week, not so I can offload the child completely or anything, but so that I can do the "supervising responsible adult" part and they can do the "able to climb and run" part. You know, like they can help the child to the top of the slide and I can be waiting ready at the bottom to shout "wheeeee!"
I was hoping to write a better blog entry about it than this.
I think when I have a child, a good master plan might be to find a local teenager I can bribe to come to the park with us a couple of times a week, not so I can offload the child completely or anything, but so that I can do the "supervising responsible adult" part and they can do the "able to climb and run" part. You know, like they can help the child to the top of the slide and I can be waiting ready at the bottom to shout "wheeeee!"
I was hoping to write a better blog entry about it than this.
Monday, August 07, 2006
I Enjoy Sex
It's okay. This isn't the traditional post made by a disabled person whereby I insist upon shoving it in my reader's faces that I still have my sexual organs and the desires to go with them, usually by using language that is far too crude for my usual style and frankly cringeworthy and often smacking of desperation. To be honest, if there are still any muppets out there who think disabled people aren't sexually active then there's no helping them, no matter what I or anybody else writes on the topic.
No, this post is about this blogger.
"Abby" does seem to have a high sex drive, something I reckon she'd be the first to admit. Back in 2004 she started blogging about it, under an assumed name. Then in 2006 she got a book deal, and the book itself was recently released.
(That's happened to several bloggers, although I can't see it happening to me - which is a good thing, can you see me having the energy to write a book?)
Yesterday the bubble burst, as you'll see on her blog. A journalist has been harrassing her, stalking her if you like, and on Sunday they gleefully published her full name, details of where she works and so on in the national press. These are details which "Abby" has made an effort to conceal, not just for her own personal and professional sake but also for her family, friends and lovers.
The Press Complaints Commission's Code of Conduct states:
The article in question carries on to slam "Abby"'s lifestyle and lack of sexual repression to such an extent that one would think we were still in Victorian times. It must be admitted that the article does a marvellous job of proving the societal bias which "Abby" is often affected by, which is that what is normal sexual appetite and behaviour for a man, is frowned upon when demonstrated by a woman.
Personally, I applaud "Abby". In retrospect, it might have been naive to think she could get away with having a secret identity online. The internet is not a friendly place and success makes you a target. However her lifestyle, in my opinion, deserves no censure. She uses condoms and is therefore looking after herself and her partners. She doesn't bring children she cannot support into the world. She is independent. Her encounters appear to be based on a mutual understanding of what the situation is going to be each time, with a healthy amount of respect both for and from her lovers. She is able to identify what she wants and takes steps to get it. Are any of these bad things?
So, in solidarity: I enjoy sex. I enjoy it responsibly, I enjoy it openly, and I don't believe there is anything wrong with that at all.
Now, let's wait for the zoom lens to come through my window...
No, this post is about this blogger.
"Abby" does seem to have a high sex drive, something I reckon she'd be the first to admit. Back in 2004 she started blogging about it, under an assumed name. Then in 2006 she got a book deal, and the book itself was recently released.
(That's happened to several bloggers, although I can't see it happening to me - which is a good thing, can you see me having the energy to write a book?)
Yesterday the bubble burst, as you'll see on her blog. A journalist has been harrassing her, stalking her if you like, and on Sunday they gleefully published her full name, details of where she works and so on in the national press. These are details which "Abby" has made an effort to conceal, not just for her own personal and professional sake but also for her family, friends and lovers.
The Press Complaints Commission's Code of Conduct states:
i) Everyone is entitled to respect for his or her private and family life, home, health and correspondence. A publication will be expected to justify intrusions into any individual's private life without consent.
As Tom Reynolds puts it "There is no 'public interest' in discovering the true identity of an anonymous blogger who happens to write about sex."The article in question carries on to slam "Abby"'s lifestyle and lack of sexual repression to such an extent that one would think we were still in Victorian times. It must be admitted that the article does a marvellous job of proving the societal bias which "Abby" is often affected by, which is that what is normal sexual appetite and behaviour for a man, is frowned upon when demonstrated by a woman.
Personally, I applaud "Abby". In retrospect, it might have been naive to think she could get away with having a secret identity online. The internet is not a friendly place and success makes you a target. However her lifestyle, in my opinion, deserves no censure. She uses condoms and is therefore looking after herself and her partners. She doesn't bring children she cannot support into the world. She is independent. Her encounters appear to be based on a mutual understanding of what the situation is going to be each time, with a healthy amount of respect both for and from her lovers. She is able to identify what she wants and takes steps to get it. Are any of these bad things?
So, in solidarity: I enjoy sex. I enjoy it responsibly, I enjoy it openly, and I don't believe there is anything wrong with that at all.
Now, let's wait for the zoom lens to come through my window...
Sunday, August 06, 2006
Helping people
In response to my last post, a commenter asked:
If I see someone going pale and looking confused, am I supposed to ask if they are OK or not? And if they say they are OK, but seem to me to be confused, do I walk away hoping they'll be OK, or do I check? I understand that folk persisting on checking might be not what you want at the time, but you have to admit, it's a bit of a tightrope for us on the "outside".
This is a good point. And, while I make every effort to be polite and profuse in my thanks to people who offer me help, "disabled" does not equate to "saint" and if someone is in a large amount of pain it's worth remembering that they're not trying to insult you personally should they come out with "F**K off and mind your own business!", they just want to be left alone with their agony and I think we've all been there.
So please, PLEASE don't be put off from offering help where you think it might be needed.
Individuals are all different, medical conditions are wide ranging, circumstances could be anything. Your assistance could just make someone more comfortable, or it could save them a trip to the hospital in an hour's time, or it could save a life. However at the very very least, if you ask someone if they need help then even if it is turned away you get to feel like you've done your good Samaritan bit for the day and can reward yourself accordingly. :)
As a rule of thumb... if you see someone who is apparently in difficulty - they've gone horribly pale all of a sudden and they've started to sway, or they've stopped in the middle of the street and they're clutching their head or their chest - then it's absolutely good and right and commendable to stop and *ask* them "are you alright? Do you need anything?" (side note: don't just grab them, they'll think they're being mugged).
If they can't answer properly, but it doesn't seem to be a 999 emergency, then things that might be helpful are:
-sitting down
-a drink of water
-discouraging people from crowding round
-finding out if there is a family member you can phone for them
-arranging a cab for them to get home safely
For help with these things, just go to the nearest shop where they *have* to have a first aider and will most likely be more than happy to help.
The trouble comes once they've said "yes, I'm fine, just a bit of a headache/cramp/whatever, it'll pass in a moment."
Are they just not wanting to make a fuss? Are they capable of making a correct judgement call? Or are they genuinely certain, with reason, that there is nothing to worry about?
Unfortunately you can't know, nor can you get a run-down of their medical history in the street (Not a word, Tom Reynolds). You don't know if you're overdoing it or underdoing it on the due care and attention front.
And this was the bone of contention in my previous post. How can I reassure my good Samaritans that everything is under control, they've done their bit and can we can carry on with our lives now?
The best way of dealing with this I ever came across was demonstrated by a security guard in Lowestoft's shopping precinct. I don't know where he picked it up but I was so impressed that once I'd got my head back together I bought a bar of chocolate for him and went looking for him just to tell him how exactly right he'd got it.
I was leaning against a wall clutching my head and he came and asked if I was okay, did I need anything. I said I was fine, it was just a bad headache and would pass in a few moments.
1) He said "You know, if there is anything you need - a quiet sit down, or to have a drink, or a taxi home - it's no trouble at all to go into one of the shops to sort that out for you." This is good because a lot of people in my state are really worried about making a fuss.
However, my headache was already easing off, so I said I wasn't going to spend much longer in town anyway.
2) He said "Okay, I don't want to hassle you, but I want to be sure you're okay, so just look me in the face and tell me whether or not you're happy for me to walk away." In other words, if I wasn't demonstrating clear signs of needing medical assistance, then he would leave the decision in my hands.
I looked straight at him, thanked him, and said that yes, I was 100% happy for him to walk away.
3) Before walking away, he reminded me "if you start to feel a bit odd again, remember all the shops have first aiders and they'll all let you have a sit-down if you ask.". Then, good as his word, he walked on.
I hope this helps.
If I see someone going pale and looking confused, am I supposed to ask if they are OK or not? And if they say they are OK, but seem to me to be confused, do I walk away hoping they'll be OK, or do I check? I understand that folk persisting on checking might be not what you want at the time, but you have to admit, it's a bit of a tightrope for us on the "outside".
This is a good point. And, while I make every effort to be polite and profuse in my thanks to people who offer me help, "disabled" does not equate to "saint" and if someone is in a large amount of pain it's worth remembering that they're not trying to insult you personally should they come out with "F**K off and mind your own business!", they just want to be left alone with their agony and I think we've all been there.
So please, PLEASE don't be put off from offering help where you think it might be needed.
Individuals are all different, medical conditions are wide ranging, circumstances could be anything. Your assistance could just make someone more comfortable, or it could save them a trip to the hospital in an hour's time, or it could save a life. However at the very very least, if you ask someone if they need help then even if it is turned away you get to feel like you've done your good Samaritan bit for the day and can reward yourself accordingly. :)
As a rule of thumb... if you see someone who is apparently in difficulty - they've gone horribly pale all of a sudden and they've started to sway, or they've stopped in the middle of the street and they're clutching their head or their chest - then it's absolutely good and right and commendable to stop and *ask* them "are you alright? Do you need anything?" (side note: don't just grab them, they'll think they're being mugged).
If they can't answer properly, but it doesn't seem to be a 999 emergency, then things that might be helpful are:
-sitting down
-a drink of water
-discouraging people from crowding round
-finding out if there is a family member you can phone for them
-arranging a cab for them to get home safely
For help with these things, just go to the nearest shop where they *have* to have a first aider and will most likely be more than happy to help.
The trouble comes once they've said "yes, I'm fine, just a bit of a headache/cramp/whatever, it'll pass in a moment."
Are they just not wanting to make a fuss? Are they capable of making a correct judgement call? Or are they genuinely certain, with reason, that there is nothing to worry about?
Unfortunately you can't know, nor can you get a run-down of their medical history in the street (Not a word, Tom Reynolds). You don't know if you're overdoing it or underdoing it on the due care and attention front.
And this was the bone of contention in my previous post. How can I reassure my good Samaritans that everything is under control, they've done their bit and can we can carry on with our lives now?
The best way of dealing with this I ever came across was demonstrated by a security guard in Lowestoft's shopping precinct. I don't know where he picked it up but I was so impressed that once I'd got my head back together I bought a bar of chocolate for him and went looking for him just to tell him how exactly right he'd got it.
I was leaning against a wall clutching my head and he came and asked if I was okay, did I need anything. I said I was fine, it was just a bad headache and would pass in a few moments.
1) He said "You know, if there is anything you need - a quiet sit down, or to have a drink, or a taxi home - it's no trouble at all to go into one of the shops to sort that out for you." This is good because a lot of people in my state are really worried about making a fuss.
However, my headache was already easing off, so I said I wasn't going to spend much longer in town anyway.
2) He said "Okay, I don't want to hassle you, but I want to be sure you're okay, so just look me in the face and tell me whether or not you're happy for me to walk away." In other words, if I wasn't demonstrating clear signs of needing medical assistance, then he would leave the decision in my hands.
I looked straight at him, thanked him, and said that yes, I was 100% happy for him to walk away.
3) Before walking away, he reminded me "if you start to feel a bit odd again, remember all the shops have first aiders and they'll all let you have a sit-down if you ask.". Then, good as his word, he walked on.
I hope this helps.
Thursday, August 03, 2006
Maybe I need business cards?
Today I managed to scare two shop assistants, one in town at Marks and Spencers and one at my local Co-Op.
By "scare" I don't mean they just asked if I was alright - I mean they were asking if I wanted to sit down or if I wanted somebody to get me a drink of water or if they could telephone someone for me. The young lady at the Co-Op even offered to walk me back to my flat to make sure I was alright.
Thing is, I wasn't feeling that awful! A bit of a headache, the usual dizziness, more muscle pain perhaps (I'm attributing that to the physical exertion of those fits, which incidentally haven't recurred since Tuesday night) but nothing incredibly spectacular. Although I must admit that my definition of "a bit" of pain is a very different thing to what it was two years ago and, I must therefore assume, quite different to the "normal" definitions.
Anyway, according to both these ladies, I seemed a bit confused and then went incredibly pale.
Now please don't get me wrong. It's good that people are concerned about each other. It's nice that they were looking out for me. I thanked both of them profusely and I hope they continue to show consideration and concern to their customers.
But I'd like some way of reassuring people when this sort of thing happens that they don't need to worry or fret or call an ambulance or make a song and dance of it. If I need to sit down, I promise to say "I'd like to sit down, please," and if I need a taxi to go home in I will say "could you call a taxi for me please?" but if I say I am okay, that means I am okay, honestly!
By the same token, however (Moon On A Stick Alert!) I don't especially want to get drawn into an in-depth discussion of my illness with every stranger who happens to see me go a bit pale. Nor do I want to be rude, though. And when I'm feeling groggy, I'm not really together enough to be properly firm and assertive or to think my way through a conversation properly.
Any ideas?
By "scare" I don't mean they just asked if I was alright - I mean they were asking if I wanted to sit down or if I wanted somebody to get me a drink of water or if they could telephone someone for me. The young lady at the Co-Op even offered to walk me back to my flat to make sure I was alright.
Thing is, I wasn't feeling that awful! A bit of a headache, the usual dizziness, more muscle pain perhaps (I'm attributing that to the physical exertion of those fits, which incidentally haven't recurred since Tuesday night) but nothing incredibly spectacular. Although I must admit that my definition of "a bit" of pain is a very different thing to what it was two years ago and, I must therefore assume, quite different to the "normal" definitions.
Anyway, according to both these ladies, I seemed a bit confused and then went incredibly pale.
Now please don't get me wrong. It's good that people are concerned about each other. It's nice that they were looking out for me. I thanked both of them profusely and I hope they continue to show consideration and concern to their customers.
But I'd like some way of reassuring people when this sort of thing happens that they don't need to worry or fret or call an ambulance or make a song and dance of it. If I need to sit down, I promise to say "I'd like to sit down, please," and if I need a taxi to go home in I will say "could you call a taxi for me please?" but if I say I am okay, that means I am okay, honestly!
By the same token, however (Moon On A Stick Alert!) I don't especially want to get drawn into an in-depth discussion of my illness with every stranger who happens to see me go a bit pale. Nor do I want to be rude, though. And when I'm feeling groggy, I'm not really together enough to be properly firm and assertive or to think my way through a conversation properly.
Any ideas?
Wednesday, August 02, 2006
Fun with Fits
Bit of an Eek the last couple of days - I've started having rather impressive fits. Sensation-wise, it feels like cramp in my muscles which then start jerking and I can't really control it. This goes on for about three to five minutes by the clock (mum's estimate) and is then followed by little "tremors" for about half an hour afterwards.
This is not on the list of ME symptoms.
I don't actually pass out, but I don't have much idea what is going on, and afterwards I'm groggy as hell for ages, not to mention sore and exhausted.
Of course on the plus side, I haven't injured myself, as it's pretty difficult to injure yourself while you're in a bed...
Yesterday evening I was on the phone to Steve and started having one, so he called my parents and asked them to go to my flat and check on me. Mum got here and I was still twitching, and given she'd seen me have one at her house not six hours earlier, she decided to call the doctor. We ended up going to the local hospital/health centre which doesn't have an A&E but is a sort of "base" for the out-of-hours doctors for the area - and then they tell you if you need to go to the Big Hospital Proper (which to be honest, the state it's in, is to be avoided at all costs).
Out of hours doctor told me to make an emergency appointment at my regular surgery for today, where someone with access to my medical records could check me over, and to stay with my parents that night. No Big Hospital, phew! Mum popped back to my flat to get me some overnight stuff, which bless her included a cuddly toy Steve got me. :)
The emergency GP at my regular surgery looked over my notes, checked me over, and seemed rather focused on one particular thing in the notes. When I got ill and was being given all sorts of tests to try and determine what was wrong with me, there was "an anomalous result" on my EEG (a type of brain scan). The neurologist decided to see how it compared to the other scan, the MRI, and decided on the whole there wasn't anything there to worry about.
The GP I saw today felt that there was a possibility that this "anomaly" from the tests last year could have developed, or been aggravated by stress/the heat/nothing/anything/everything, so she wants to refer me BACK to the neurology department to be checked out AGAIN.
In the meantime, another possibility is that my system has had enough of one of the medications I'm on - unlikely but you never know, and I'm only on a half-dose anyway so I should get away with cutting it out. See how that goes.
Why can't I just have something nice and simple? Go to the doctor, they take my blood pressure and look in my eyes and ears and throat and hit me with the little hammer and say "okay Mary, the problem is This! You'll have to rest up for a couple of weeks and take these tablets, but then you should be fighting fit and back at work again, any problems come and see me, if not we'll just have a follow-up appointment in, shall we say a month?" If this happens to you, appreciate how lucky you are!
This is not on the list of ME symptoms.
I don't actually pass out, but I don't have much idea what is going on, and afterwards I'm groggy as hell for ages, not to mention sore and exhausted.
Of course on the plus side, I haven't injured myself, as it's pretty difficult to injure yourself while you're in a bed...
Yesterday evening I was on the phone to Steve and started having one, so he called my parents and asked them to go to my flat and check on me. Mum got here and I was still twitching, and given she'd seen me have one at her house not six hours earlier, she decided to call the doctor. We ended up going to the local hospital/health centre which doesn't have an A&E but is a sort of "base" for the out-of-hours doctors for the area - and then they tell you if you need to go to the Big Hospital Proper (which to be honest, the state it's in, is to be avoided at all costs).
Out of hours doctor told me to make an emergency appointment at my regular surgery for today, where someone with access to my medical records could check me over, and to stay with my parents that night. No Big Hospital, phew! Mum popped back to my flat to get me some overnight stuff, which bless her included a cuddly toy Steve got me. :)
The emergency GP at my regular surgery looked over my notes, checked me over, and seemed rather focused on one particular thing in the notes. When I got ill and was being given all sorts of tests to try and determine what was wrong with me, there was "an anomalous result" on my EEG (a type of brain scan). The neurologist decided to see how it compared to the other scan, the MRI, and decided on the whole there wasn't anything there to worry about.
The GP I saw today felt that there was a possibility that this "anomaly" from the tests last year could have developed, or been aggravated by stress/the heat/nothing/anything/everything, so she wants to refer me BACK to the neurology department to be checked out AGAIN.
In the meantime, another possibility is that my system has had enough of one of the medications I'm on - unlikely but you never know, and I'm only on a half-dose anyway so I should get away with cutting it out. See how that goes.
Why can't I just have something nice and simple? Go to the doctor, they take my blood pressure and look in my eyes and ears and throat and hit me with the little hammer and say "okay Mary, the problem is This! You'll have to rest up for a couple of weeks and take these tablets, but then you should be fighting fit and back at work again, any problems come and see me, if not we'll just have a follow-up appointment in, shall we say a month?" If this happens to you, appreciate how lucky you are!
Saturday, July 29, 2006
Lucky Dip
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.
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.
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.
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