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Tuesday, May 15th, 2012
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1:32 pm - Just nod if you can hear me... is there anyone at home?
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It's been a while since I blogged (both here, my "personal" blog, and flashsays, my "articles-based" blog). So here's a quick catchup.
( The fatigue is getting worse... )
( So, today I saw my rheumatologist... )
Anyway, that's where I'm at. I'm usually active on twitter @techiebabe from bed*, but I generally haven't got the energy or wherewithal to blog very much. Suggestions are very welcome, I will try anything within reason (but one thing at a time, to give myself a chance to see what's working). Thanks for reading and to my friends and neighbours who are bearing with me. I just wish there was something I could do.
* And I enjoy playing Draw Something. If you fancy a game then please find me either by name via Facebook, or username of techiebabe. I check for new games several times a day, health permitting. Happy to play anyone!
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| Thursday, January 26th, 2012
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3:32 pm - Well if I had my choice of matter, I would rather be with cats
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I saw this article about google preferences and followed the link to "ads and preferences".
This is what google thinks of me:
Your categories
Below you can review the interests and inferred demographics that Google has associated with your cookie. You can remove or edit these at any time.
Autos & Vehicles - Vehicle Shopping
Business & Industrial - Business Services - Office Supplies
Shopping - Toys
World Localities - Europe - Nordic Countries - Iceland
World Localities - Europe - Western Europe - United Kingdom - England - London (UK)
World Localities - Europe - Western Europe - United Kingdom - England - South West England
World Localities - North America - USA - New England - Massachusetts
Your demographics
We infer your age and gender based on the websites you've visited. You can remove or edit these at any time.
Age: 45-54
Gender: Male
So I'm not just a man, I'm an OLD man!
What the heck is Massachusettes all about? Never been there! Gwyn, can you think of a reason I'd be linked to it?
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| Saturday, December 31st, 2011
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7:48 pm - Happy New Year!
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I won't be sorry to see the back of 2011. My dad died on 25 April, just 8 weeks after his 60th birthday. Therefore everything since then has been "firsts" - the first Christmas without him, the first new year without him... and we have his birthday at the end of Feb 2012 as well. It isn't easy. I am desparately missing him (every Grand Prix, when I wanted to discuss it with him) and my poor mother must be desparately sad and lonely. She seems to be coping amazingly well.
I've had terrible health this year. From Feb to summer I took buprenorphine, which turned me into a zombie. I needed a quite high dose to tackle the pain. So next I tried oxycodone and that hit my pain, but I got nausea (I'm on 3 different anti emetics) and my sleeping pattern is terrible. I'm now off it but still get the odd withdrawal symptom. About one day a week I spend the day in bed sleeping and sometimes so tired that I'm not able to eat safely, so I have prescription shakes instead. My limbs ache with exhaustion like a bad bout of flu. I don't think people realise quite how bad I get.
The last time I spent the day in bed, unable to do anything, and having prescription shakes instead of meals, was Christmas Day. That was fun. Poor Mike spent the day popping up to see if I needed anything, and watching TV and eating on his own. I felt awful that I'd left him alone on Christmas Day but I couldn't help it.
I haven't been outside Leytonstone independently since July - although Mike has taken me on holiday and to his family for the day etc. And we went to my mother's for 4 hours on Wednesday (an exhausting 12 hour day, but I made it. And then I slept for 16 hours when I got home).
So I'll be glad to see the back of 2011.
I hope in 2012 that my health will recover so I can catch up with friends I've missed socialising with in the last six months. I hope to have the energy to resume my hobbies (photography etc.) and to resume work in some capacity, just a few hours here & there would be a start. And I'd like to be able to cope better with my dad's death, and wish the same to my mother, but I think only time can do that.
Thanks to all my friends who have stuck by me and supported me rather than getting bored and frustrated that I can't socialise much. I appreciate it very much. And thank goodness for the Internet!
I wish you all a very happy, healthy and safe New Year, whoever you are and whatever you're doing. Here's to a year of improvement!
PS This week I took possession of an item of my dad's that I've always coveted:
and it's on my desk where I can look on it often. Click here to read the detail and see what it is.
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| Tuesday, December 27th, 2011
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4:58 pm - And here it is, Merry Christmas...
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We are having our Christmas meal tonight as things went a bit awry on Christmas Day; I was ill and spent the day in bed, drinking prescription shakes instead of eating. Not much fun, I have to say. Mike was wonderful, checking on me every so often and bringing whatever I needed, which was good as I was too weak to do much for myself.
Sounds like Spoonie Secret Santa was a success and people liked their presents.
I hope whatever you did - or will do, if you're russian orthodox - you had a good Christmas.
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| Sunday, December 4th, 2011
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11:26 pm - Spoonie Secret Santa!
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Hi all,
I am co-ordinating a Spoonie Secret Santa 2011 (thanks to Kaliya and Imogen who came up with the idea). If you will be on your own at Christmas - or even if you won't - and you're a spoonie / disabled person, here's how to get involved.
Firstly, as we've left it quite late, this is just open to people in the UK. Sorry about that but we would miss posting dates for other countries.
Stage 1:
Send your details to me (Flash Bristow) at xmas@gorge.org. I need your name, postal address, and email address. Also if you use twitter or blog it would be helpful to have your twitter name or your blog address, so the person sending to you can have a look, find out more about you and hopefully guess at something you'd like.
I need your details by midnight on Sunday 12 December.
Stage 2:
On Monday 13 December I will draw names at random and give everybody one person's details, so they can send a gift directly to that person.
The budget is just £5 (plus postage). Please send something you'd be pleased to receive, whether it's something useful or something that will raise a smile. It is possible that yours is the only gift that person will receive this Christmas.
You don't have much time! Royal Mail postage deadline is 14 December for standard parcels, 17 December for Second Class or 20 December for First Class. You might want to buy something in advance so it's ready to send when you get your recipient's details.
Ideally your gift should be wrapped, and labelled "From Spoonie Secret Santa" or similar, so that the recipient knows where it's come from, and can keep it wrapped up until 25 December.
Please let me know once you've sent a gift so I can tick it off the list, if possible.
Important:
If for any reason you need to drop out, or you think your recipient's gift will be late, please let me know so I can make sure your recipient still gets something, or knows to be patient! However, the system relies on everyone doing their best so please do send something to your recipient on time if you possibly can.
I will not let anyone know who sent a gift to who, so it stays a secret. I won't be taking part myself, so there's no question of knowing who is buying for me!
If you have any queries please ask on twitter - me (@techiebabe), Kaliya (@bendygirl) or Imogen (@imogen__may) - or email xmas@gorge.org with your query.
I hope you enjoy taking part in Spoonie Secret Santa!
Flash X
PS Participants take part at their own risk. Personally I am happy to give out my address and know it is out there on the internet, and I will know which one participant is given your name and address, but please make the decision to participate for yourself.
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5:57 pm - I would like you to dance, take a cha-cha-cha-chance
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| Tuesday, November 15th, 2011
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12:08 pm - Can we play the game your way, can I really lose control?
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I have just been to see my consultant (rheumatologist who I visit every 6 months. She's great).
I explained the problems I have with my pain meds (nausea and sleeping all morning) - see this FlashSays article about managing pain for more details... and I explained how I feel like I'm losing control of my life, that my health is getting worse, that I'm a rubbish wife, and that I can't do much without assistance anymore.
I was basically told that if we can stabilise things, that would be good (forget "getting better" for now) and that as the pain meds do help the pain I need to find a way to live with them.
And that I shouldn't be trying to work, and should maybe cut back on the volunteering I'm doing...
So it was a pretty depressing appointment, all things considered!
I want my life back.
I try to stay positive and keep fighting, but right now it is quite hard, and I feel I'm losing "me".
Apologies to anyone I've failed to meet up with, or moaned at. I'm not doing so well right now.
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| Friday, November 11th, 2011
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9:07 pm - Play the game, play the game...
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Shamelessly stolen from ![[info]](http://l-stat.livejournal.com/img/syndicated.gif?v=91.6) rmc28_dw:
Type 'why are [group] so' into Google and see what you get in autosuggest.
I got:
redheads: angry, weird, unattractive, fair skinned
geeks: unpopular, cool, hot, often atheist
disabled people: mean, happy, so...cially excluded
husbands: annoying, selfish, mean, lazy
wives: annoying, mean, boring, stubborn
children: annoying, stupid, rude, noisy
grandparents: important, mean, special, annoying
(it seems everyone in a family is annoying!)
f1 drivers: short, fit
musicians: hot, weird, sexy, skinny
artists: pretentious, weird, depressed, sensitive
That'll do for now. It kills time, anyway!
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| Thursday, November 3rd, 2011
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7:54 pm - Chirpy chirpy cheep cheep
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Are you on twitter? I wonder how many of my friends I am missing! If you are, please let me know your username. Thanks!
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| Wednesday, October 12th, 2011
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5:12 pm - Electricity sparks inside of me, and then I'm free
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I've just done the recording for BBC Breakfast - it will be on BBC1 on Friday, at 6.40, 7.50 and 8.50am as well as on the news channel during the day.
I'm very excited about the new pylon designs and can't wait to hear the winner.
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| Saturday, October 8th, 2011
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2:51 pm - Hey man! Look at me rockin' out, I'm on the radioooooo
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Pylons again: I'll be on Radio 4 tomorrow (Sunday) in The World This Weekend (1pm, Radio 4). Just pre-recorded it. Shaun Ley (who I remembered from presenting Points West when I was growing up) was lovely.
I should also be on BBC Breakfast on Thursday morning, but that hasn't been recorded yet.
I do enjoy speaking on the radio (and TV) but always feel I could have said more and was cut off too soon. Such is the nature of the beast!
We need an hour long programme JUST about pylons. No? :-)
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| Monday, October 3rd, 2011
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2:55 pm - I'm walkin' through a valley of pain
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A long post about pain, and the relative strengths of painkillers.
If you can help please read and comment.
( If not, then I've put it behind a cut, cos it's boring )
Are my calculations correct? Do you take either tapentadol or oxycodone, with good results? Experiences of either drug would be very useful. And finally, those in the know, what dose do you think I should be on?
Any advice welcome.
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| Friday, September 30th, 2011
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4:54 pm - I imagine in a month or 12 I'll be somewhere having a drink, laughing at a stupid joke
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Quick update for you:
1) Meds - I finally got to the pain clinic and they've put me on tapentadol for my night time pain, and oxycodone for breakthrough pain in the day. Fingers crossed they a) work b) don't make me throw up or fall asleep! I collect them today.
2) Dentist - after 5 HORRID trips to the Special Needs Dentist I have finally been told I don't have to come back for 6 months! I hate the dentist, it's painful for me to sit and also frightening to let someone else take over what happens to your body, and the jabs were in nasty places, BUT it's done and I feel very proud of myself for going each time and getting it done.
3) Awww - The other day I emailed ![[info]](http://l-stat.livejournal.com/img/userinfo.gif?v=91.6) techiebloke and apologised that because I'm sleeping so badly and still can't get up in the morning, we will be going to his parents for afternoon tea rather than lunch. He sent me a lovely email back saying that while he hopes I get the night time pain fixed, because it's obviously bad for me, not to worry about getting up in the morning - if it happens, great, but not to sweat about it if I need the sleep. It was really supportive and exactly what I needed to hear. I nearly cried!
So I'm still here and still battling things.
Have a good weekend, everyone!
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| Saturday, September 3rd, 2011
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5:46 pm - Radio, what's new?
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Just realised I forgot to tell my LJ followers that I was going to be on the radio this week! Whoops!
I was on Today on Monday (Radio 4) first of all. I was in a very brief discussion with Tessa Munt MP but she wasn't interested in debate, she just wanted to say her piece (even though some of her claims were complete tosh) and railroad. Disappointing.
Then I was on Radio Somerset and Radio Bristol the same day.
On Tuesday I rested!
On Wednesday I was on Jeremy Vine show (Radio 2) and it was a lot of fun; I was interviewed first and then responded to comments from callers.
If you are interested you can Listen Again to any of these but I recommend the Jeremy Vine show:
http://www.bbc.co.uk/iplayer/episode/b013wvyl/Jeremy_Vine_Should_everyone_in_your_workplace_voluntarily_disclose_what_they_earn_in_the_interests_of_equality/ - I'm on from about 1hr41 to about 1hr53. As I said it was fun, and I hope interesting. It's gained me some new twitter followers anyway!
Speaking of twitter - that, Facebook and Google+ are where I tend to be these days. Is there anyone following me on Livejournal who doesn't follow / friend me on one of those three social media? I'm not sure how redundant my LJ postings are these days. Please speak up if you follow me here, and only here - it would help me to know. Thanks!
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| Wednesday, August 24th, 2011
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2:22 am - And what if this party fears two?
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Mike's not here, he's working overnight.
Without him, I lose track; my normal state is exhaustion but I need someone to tell me "it is bedtime, I'll see you upstairs shortly".
That doesn't seem to have happened although I am assuring myself that I can always go to bed at 3am "when my painkillers kick in" if necessary.
In the meantime, why not have another meal? Chateauneuf and instant noodles, that'll be classy.
It would be reasonable if I was pissed but mostly this evening I've been drinking hot chocolate...
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| Monday, August 15th, 2011
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7:54 pm - You are someone else. I am still right here.
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My LJ friends sometimes wonder where I am and if I'm ok. The answer is yes, but I just don't use LJ very much any more, other than on the community ![[info]](http://l-stat.livejournal.com/img/community.gif?v=91.6) theladiesloos.
I'm on twitter pretty much every day as techiebabe and I blog on Flash Says every week, or thereabouts. It's meant to be on all manner of topics but lately has been a bit disability-centric.
I'm also on facebook (read it every day but don't always post) and Google + (read it every few days, post when I've got something to say).
Anyway, for those who are just on LJ, hello!
And in the interest of saying something interesting - tomatoes! Last year I had one each of 5 different F1 varieties growing in my bathtub planter. This year I have two self-seeded plants which I have done nothing to, except fertilise twice. Today I noticed that there are baby tomatoes on one of them and flowers on both, and there are a couple of other new tomato plants coming through too! So I am very excited to see what kind of tomatoes I get. Last year there were four cherry varieties in different colours (one plum) and one more normal variety which was meant to be beef but never grew that big. Who knows what I will get this year? It resolves the issue of which vegetable to grow this year, because the bathtub planter has taken care of itself! More when I find out what I've got!
Finally here's a photo of me and Mike from last week on holiday (camping in Yorkshire) to prove that I'm still here.
Not very flattering, but hey. It was holiday. Under canvas. We were happy. I can recommend the Sprayway Valley 4 for anyone looking for a tent that's generous for two people, and York Caravan Park for anyone looking for a tranquil adults-only campsite within the York ring road.
Hope you're all happy too.
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| Saturday, July 23rd, 2011
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6:35 pm - They tried to make me go to rehab...
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Poor Amy Winehouse. No surprise, but still sad.
She joins a list of great musicians who died age 27: Janis Joplin, Jimi Hendrix, Jim Morrison, Kurt Cobain... who have I forgotten?
At last she's at the end of her struggle.
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| Thursday, June 16th, 2011
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7:42 pm - Give a little bit of your love to me
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Hello, friends!
You may know that I am involved in setting up Leytonstone's best annual fun event - the Leytonstone Arts Trail. I'm their publicity officer.
The trail is a voluntary organisation. All the art trail organisers give up their own time. In July we are showing the work of more than 50 artists (new and established) in windows, cafes, streets, shops and unexpected places around the town from 1 to 17 July. We have raised enough money to print some beautiful maps as in previous years but, because of the economy, funding is very tight this year.
Sadly, the regeneration company (O-Regen) that provided us with the grant for this project has gone into receivership without paying us the promised funding - and the people that ran off with our money are being investigated by anti-fraud police.
However we have still undertaken the projects (based on the promise of funding) - wonderful things such as work in schools to get children involved in creating work for a professionally curated show. We are running an intensive programme in a particularly deprived school for the young people to make an animated movie with their own sound track to be screened during the trail.
So that we can finish the project we have resorted to asking our friends and families to help us through this direct appeal.
If you can spare a couple of pounds that will be fantastic (you can send it through the easy to use rockethub website on the link below).
http://www.rockethub.com/projects/1963-the-leytonstone-arts-trail
The website comes up in dollars but you can give in £ and it makes the conversion.
Anything would be welcome but if you give $20 (about £12.50) or more then you will get a goody as a reward...
There are art prizes and giveaways in return for your donations such as printed postcard packs - original artworks and limited edition prints supplied by some of the lovely artists in the trail.
You could help us even more by posting this appeal on to a few more friends or family of your own if you know of anyone who would not be offended / might like to help this truly grass roots creative project.
For more about the works in the Leytonstone art trail 2011 see www.leytonstoneartstrail.org
For more about Let's Fill Leytonstone With Art... see www.letsfill.co.uk
I know money is tight for most people this year but please DO have a look at our Rockethub site, and give anything you can, it all counts. Thank you so much in advance!
http://www.rockethub.com/projects/1963-the-leytonstone-arts-trail...
[Edit to add: there's also now a feature on Rockethub's website, an interview with one of our committee, explaining more about why the Arts Trail is so cool!]
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| Friday, June 10th, 2011
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5:40 pm - Have a warm glass of shut the hell up
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I embarrassed myself this week. Thought I'd share it with you...
I was at M&S making a complaint to two staff, a man and an Asian lady. I was asked "who did you speak to last time?"
"An Asian lady" I said, then turning to the woman I was talking to, "Not you obviously. She was much younger."
"Oh thanks!" said the woman.
"OH NO!" I cried "I'm so sorry. I mean, thinner!"
"Oh!" she said.
"NO! I mean, taller! Yes, she was taller than you... Oh I'm so sorry..."
"Don't worry" she said, smiling "I'm laughing. But you're lucky I'm laughing!"
Whoops!
Have a good weekend, all.
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| Wednesday, May 25th, 2011
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7:06 pm - You got the power (2)
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