baratron: (cute)
We went to see Detective Pikachu last night. I wrote about it on Tumblr, which seems to be the appropriate place for fandom stuff.

It's set in Ryme City, and was filmed in London. You can SEE London under the CGI and it's amazing. But there is also a very important Content Warning for the plot, which can also be read on Dreamwidth.

Frustrating as all hell, because the movie otherwise does diversity very well.
baratron: (boots)
Anyone want to come to the World Wheelchair Rugby Challenge with me? 12th-16th October at the Olympic Park. Evening events start at 5.30pm. Not quite sure why I've only just received notice of this when it's next week, but it looks like there are still tickets.
baratron: (eye)
So I haven't written anything here in over 2 months, which is probably the longest I've ever gone without updating this journal since it's existed. Mostly this has been because I've been busy enough to lack spare energy to write about what I'm doing, combined with the fact that what I'm doing isn't even interesting, but also because I need a new phone. My phone is an HTC Desire Z which is at least 4 years old, and it's reached the point of unreliability where it randomly reboots itself with no warning. Also its hardware keyboard (the main reason why I've kept this phone for so long - I find touch screen typing very difficult) randomly misses keystrokes or adds extra ones. To add even more insult, I can't even comment on some people's livejournals because I can't open the "comments" pages from my phone web browser - it just gets stuck in a loop of reloading the post without the comments. Bah.

Some good and interesting things have happened. We went to the Jettblack album release party, which was held in a basement bar in Soho down a terrifying flight of stairs - which necessitated the band members carrying my wheelchair down the stairs! Also we went to see Ginger Wildheart's Songs and Words show in Leeds, which was extremely moving and also hilarious. Since I'm a member of G.A.S.S. we also went to the Meet and Greet where I gave Ginger a t-shirt that I'd seen online and thought he might like the slogan of... and he told us how his youngest child believes that Lemmy is his grandad! The next day we met up with some of my friends from Pokecharms, and went around the Royal Armouries. This was delightful since we're all video gamers and were looking at old swords and armour going "That's like the $fill_in_the_blank armour from Skyrim!"

My chronic fatigue is still crap. I got the results of my blood test back on Tuesday and discovered that my TSH level is now 1.31 - which is well within normal by every reference range I've ever seen! So... it's not my thyroid making me exhausted all the time. Going to get my vitamin D level checked again because a few years ago, the anticonvulsant I take as a mood stabiliser was destroying all the vitamin D in my body. But given that I take a high dose vitamin D every other day, that might not be the problem at all.

Also, the Mirena coil and I are officially Not Friends. Cut for those who wish to avoid )
baratron: (endurance)
So I was planning to go and see Jettblack* on Saturday. Except I hadn't quite got around to buying tickets, because that would have involved having spoons. I tried to buy tickets today and found that the gig's been moved from the totally accessible Islington Academy to the entirely inaccessible Camden Underworld. Godsfreakingdamnit.

So now, at extremely short notice, I have to find out whether any of the other venues are accessible, and book trains and possibly accommodation. The best bet is Wolverhampton Slade Rooms, which I've been to before, but none of the usual ticket sites are listing tickets for the gig (sold out?). The second best bet is Southampton Joiners, but I can't find out if it's accessible online. (The site which says it is also gives contact information for a completely different venue. Argh).


* the hair metal band, not the porn star.
baratron: (richard)
I really don't know how I'd manage without Richard. He's my best friend, partner, and carer. But what he does for me goes so far beyond what I could expect from a husband.

My wheelchair was misbehaving the whole of yesterday. Every time I switched it on, it failed with the error code which means "left motor not working". I am very familiar with this error code :/ Fortunately, it started the second time, except on the train coming home when it needed four attempts to get going. It was also making terrible noises and threatening to drive me into things because of its refusal to turn left.

So I came home and emailed Richard, and after dinner he took the motor apart - and was up until 4 am working on it. Apparently he had to "cut a new profile" for one of the motor brushes and also "file away corrosion" on one of the contacts. I know the basics about how motors work because they're covered in GCSE Physics - which I took many years ago and have also taught - all that stuff about brushes and split-ring commutators and so on. Could I take one apart and fix one? No. Could many of my friends, even though they're all geeks? No.

Without Richard I would be involuntarily housebound until such time as a wheelchair repair shop got around to fixing it. And I have an exam on Friday! (More about this later)

A couple of weeks ago our boiler conked out - while it was negative degrees Celsius outside. I spent a few hours huddled in three layers of clothing including thermals and under a blanket while Richard fixed it. Could anyone with the knowledge fix it? No, because in order to fix it, Richard had to make a new part on his lathe, and most people I know don't have lathes in their houses! I almost feel like writing a letter to his sole surviving parent to say "Thank you for bringing Richard up in a house full of books and machine tools", but that would seem creepy. Unless I found a better way to phrase it.

I really did get very lucky with my choice of boyfriend, all those years ago.
baratron: (endurance)
Well, the good news is that I don't have any broken bones or nerve damage. The bad news is that I am going to be very, very sore for a while.

I am not sure that I can tell you in a public post what actually happened, since it involves improper handling of wheelchair ramps and my getting injured as a result, and I am going to have to Make Formal Complaints and such like. Also I don't feel like writing about it now since I'm feeling pretty dizzy and sick after almost six hours in A & E without food. Apparently most of Kingston was ill tonight.

But I'm okay.
baratron: (london)
...and I don't have all afternoon to get from London Waterloo to Camden Town and back to Birkbeck for an evening class. So I am going to Take The Tube! Along a theoretically accessible route which I've done before... But you never know until you actually get there whether the lifts are going to be working, no matter how many times you check the Transport for London web site.

My train journey from Kingston to Waterloo doesn't rely on lifts. Going, I can drive myself up the ramp if I need to (it's steep, but do-able in an electric wheelchair). Coming back, I can always get off at Norbiton, which has a ramp. Journeys which absolutely depend on functioning lifts stress me out in a way that a person with healthy legs would have trouble understanding.

The worst thing is that at King's Cross, there are three separate lifts to bring you to the surface from the tube. Not three which work in parallel, but each one doing one floor. So it's up and along and up and along and up and out, therefore either tripling or cubing the amount of stress required.

Still, it's better than sitting in a traffic jam for gods know how long.
baratron: (boots)
Sooo... I'm currently sitting in the hotel room with a wheelchair with a flat tyre. For me personally, this is among the most frustrating things I can think of that could happen while travelling. Any kind of wheelchair breakage renders me basically stuck in the hotel. I suppose I could limp down to Reception and get a taxi somewhere, but that's money I don't have and a serious amount of limping. Normally, I'm just using the wheelchair because I get exhausted when walking long distances. Today, my left knee has decided to act up and it's a struggle just to get from the bed to the bathroom. Argh!

But this hotel is amazing. One of the things about staying in a fancy hotel is that they bend over backwards to help. Reception sent up a Maintenance guy who listened to Richard and came back with the tools he needed to get the wheel apart. Except we still don't have a bicycle pump.

Sigh.
baratron: (goggles)

No, woman with a pushchair and no baby in sight, you DON'T get to make me feel guilty for being in the Priority Wheelchair Space. "That thing" is already as pushed over as it goes,
and I'm well within the blue lines. It's not my fault if your pushchair doesn't fold.

baratron: (flasks)
You know what makes me really fuckin' angry? People who boast that they don't take any medications that are made in a lab. As I said to one of these loons today, you have no idea how lucky you are to have the CHOICE not to take prescription drugs. I personally have the choice of taking prescription drugs or dying.

I was explaining to some people who don't know me well about the delights of chronotherapy, and why today I got up at 2 am and will remain up until at least 2 pm. And said people were trying to convince me that I should try drinking alcohol or smoking pot for my sleep problems. Because, yeah, that's a bloody great idea for someone on several medications which say not to mix it with alcohol, and who as a result of chronic fatigue syndrome has no tolerance for it at all (as in a few sips of something alcoholic puts me under the table and feeling awful). And who is extremely asthmatic and starts retching and puking when even vaguely near pot smoke.

Oh yeah, and apparently "weed won't cause variable effects with other medications". I'm on carbamazepine, which is a cytochrome P450 inducer, and that is affected by somewhere between half and two-thirds of all other medications, including natural remedies. The chemicals in pot, of which there are many, could make me need to increase or decrease the dosage of any or all of my meds. If I could find academic papers stating which particular biochemical pathways are affected by it, then I might consider it. But the fact it's illegal means there is insufficient information about drug interactions. The other problem with it being illegal is you can never be certain what dose you're getting. I prefer drugs where the dosage is known.

*stab stab stab*

In other news, I have a new wheelchair. It's a new-to-me wheelchair rather than new. It was made in 1998. However, it is built like a fricking TANK. It is higher off the ground than my old one, "for a more important appearance on the road"(*) and also very, very red. I'll link you to the eBay auction for now because I lack spoons to take my own photos. There's also more pictures in this brochure, although mine doesn't have the riser or tilt functions, not least of all because I don't need them.

(*) Engrish phrase from the Di Biasi tricycle catalogue, circa 5 years ago.
baratron: (Luka)
Well, that was one of the more amusing/mortifying moments of my life. So I went to the free lunch with the visiting speaker today, & that was all well & good. I had a jacket potato with baked beans, but I could also have had soup or salad. Then I tried to go to the lecture. 40 minutes of wandering later, I got confirmation from UCL Room Bookings that no, that venue really isn't wheelchair accessible.

So it looks like I went to the lunch because it was free but couldn't actually be arsed to attend the lecture afterwards. I need to find the lecturer's email address & apologise.

Also, I went back to the Graduate Office in my department at Birkbeck (= rather small College of the University of London) to complain, & they were shocked that UCL (= large & prestigious College of the U o L) had rooms which weren't accessible! Dudes... Did you think to ask?

Though I found out that the Graduate Symposium isn't in Mill Hill at all, it's in UCL. This would be good, if not for the fact it's currently booked to be in the same venue that I couldn't get into today. Laugh? It's that or cry.
baratron: (angry)

Today my life is a fucking disaster & I want to stab everyone in the head. I was supposed to be attending a lecture on research very similar to what I'm doing, at UCL, at 1pm.

Woke up at 9.50am with Richard's alarm. Couldn't go back to sleep. Got up & had a Proper Breakfast (!). Arrived at Kingston station just in time to miss the 11:34 train - could have caught it if I didn't need the bloody ramp to get onto the train :/ Got the 11:49 okay. Arrived at Waterloo at 12:15, so far making very good progress. It's normally no more than 15 minutes from Waterloo to UCL by taxi... Sat in the taxi queue for 45 minutes. Got in the taxi just after 1pm. Arrived at UCL at 1.50 pm. All because of the student & anti-cuts demonstrations that I didn't know were happening today, which blocked up the roads for people like me too crippled to use the bloody Tube.

Didn't even attempt to get to the last 10 minutes of the lecture. Lurked outside to apologise to Philip & the person running it & the speaker. That took a huge amount of courage & I'm really quite shaky now. Want to do nothing more than crawl home & back into bed, but seeing as it cost me £26 (!) to get in, I might as well stay here. Guess I'm having a protein bar, "fruit flakes" (TM) & ginger biscuits for lunch, since I only have £1.88 left in my purse. Unless Richard happens to have no work to do (lol!) & can come up with food...

I "should" have just gone into London as soon as I got up - but I didn't bloody know I needed to. Really annoyed that I didn't check the internet news when I woke up - but I didn't know I needed to. I even generally support the demonstrations taking place. It's just that I wish I'd known they were happening e.g. last night before I went to bed, because now I'm fucking tired & stressed & grumpy & hungry & headachy, & didn't make it to the lecture I was supposed to be at, & would quite like to fall over and die, thank you very much.

Edit: Day has only improved... Headache didn't go away, so didn't dare go into the lab because solvents. The bus driver on the way back failed to see that I existed despite me pressing the "disabled" button to get off, and a total stranger decided to fall over me at Waterloo station because she wasn't looking. Ready to fall over dead now.

baratron: (mages guild)
So... today was fun, since during the PhD talks (given by students), the fire alarm went off. Poor Davide, who is my grumpy officemate who is never happy, was halfway through his talk: which has to be some sort of nightmare. I mean, there you are, you've got yourself all psyched up to give the presentation, you're halfway through, and the fire alarm goes off. Today, he had a reason for being grumpy.

It was also fun since I got to use my Personal Evacuation Plan for the first time since I started using the wheelchair to get around. We were in the basement, a not-very-accessible area at the best of times. So I just called to everyone that "someone" should tell the Fire Warden that I'd be waiting by the lift shaft, since that is what my Personal Evacuation Plan says. And people were freaking out about whether I'd be all right! I explained how it works: I wait by the lift shaft, a Fire Warden comes to check on me, they find out if it's a real fire, if it is then we arrange evacuation via stairs and/or the "fire-safe lift". (Apparently, the main lifts for the building are now double-walled and have two separate power supplies, so they can still be used safely even if one power supply burns out!). It's amazing how many people (science PhD students, postdocs, and lecturers) couldn't get the hang of the facts that:

(a) I'm perfectly safe waiting by the lift because all the fire doors shut, making it a sealed area, as long as the Fire Warden knows I'm there.
and
(b) I only need to waste spoons getting out of the building if it's a real fire! Sure, if it's a real fire, I can drag my arse up or down stairs, then collapse in a heap somewhere. It's perfectly safe, as long as I'm not trying to go up or down stairs while a whole load of people who walk at normal speed are trying to get out.

Sigh.

Anyway, it turned out to be a false alarm - apparently, the second malicious false alarm within a few weeks, so I didn't move at all, and we eventually went back into the room and carried on with the talks. Something like 25 minutes late. Just as well that today was the day VX is open late, so I didn't miss my opportunity to get cake. Then there would have been trouble.
baratron: (cn tower)
We're leaving for Zürich in an hour's time. I have entirely failed to sleep, and it's now late enough to even try sleeping. Instead, I'm running a bath, and I've put the oven on to make a hot sausage sandwich. It's damned annoying. Our flight isn't until 11:25, but I have to check in by 9:25 because of having to check in my wheelchair. Ugh.

Switzerland is amazing. I'm looking forward to trains that leave on time. The last, and until now, only time I've ever been in Switzerland was with the Guides when I was 16. Our train broke down and it made the national news. I believe it arrived 45 minutes late. Given that we were from a crappy little commuter town vaguely near London, our trains can be 45 minutes late on a NORMAL day. The train staff were amazed how calm we all were, and we kept explaining that we were used to trains being late, so it was no hassle - and they just couldn't understand ;)

Anyway, I just made an international call to the Swiss train company's disabled assistance line. I was worried because the website says you need to give an hour's notice for assistance requests (which is already an order of magnitude better than the British train companies' 24 hours - and even with a confirmation you can't guarantee the assistance will happen), and of course I don't know exactly which train I'll be on because I don't know when my flight will arrive. It could be early, or late, or some other emergency might happen. However, it turns out that I can get on any train called S16 without needing help, since I can roll straight on. And it turns out to be a double-decker train, so my mother will be super excited since she loves those.

Edit due to late posting: It all worked. Tired now, going to bed.
baratron: (cn tower)
We're off to Zürich on Thursday. Every time my mum has a "big number" birthday, she wants to do something she's never done before, which usually equates to going somewhere she's never been before. I think this is a good policy. We picked Switzerland somewhat at random since the flights were cheap compared to the rest of Europe, and Zürich because it has the highest number of vegetarian & vegan restaurants on HappyCow. Plus I've never been there, either.

So I just endured an exquisitely painful conversation with a random woman at Swiss Air (now branding itself simply as SWISS - but that's a useless company name unless you already know that I'm talking about an airline). I had to call the airline because there's no way to arrange assistance online (really, I did look), and as an online friend said "it has to be as inconvenient as possible". Since it was gone 1 am here, I got connected to some random country where it is still normal working hours, and was asked weird personal questions in an entirely unnecessary way! The conversation went something along the lines of:

"Why do you need a wheelchair?"
"Er, what are the options you have on your screen?" (Expecting something along the lines of
a) Cannot walk long distances, needs assistance through the airport, but can climb stairs.
b) Cannot walk long distances or manage stairs, but does not need assistance on the plane.
c) Cannot walk at all, needs an onboard wheelchair.
)

"Well, is it because you've had surgery?"
"No".
"Or broken your leg?"
"No, it's because I need to check in my wheelchair, so I can't drive myself to the gate!"

Only it went on longer, and was more torturous. We did, eventually, go through the options a, b and c above, but she had to point out that there were already 3 people who needed assistance on my flight, as if that should make a difference to my need for assistance. (Also, only 3 people who needed assistance?)

Then when I explained that although I prefer not to climb stairs because it leaves me in pain, I *can* in an emergency situation, she started suggesting I might need to get a medical clearance! So I pointed out that it's chronic fatigue, I've had it for years, and I've flown all over the place.

And THEN when I explained that I wouldn't need any extra help from airline staff onboard the flight since I'd have my husband with me, she started calling me Mrs Lastname! If I wanted to be booked as Mrs Lastname, I'd be booked as Mrs Lastname rather than Ms Lastname! She had my booking on screen, with Mrs Mother's Name MyLastName, Ms Helen-Louise MyLastName, and Mr Richard SomeOtherName, and I'd given my first name as part of the call! Clearly, if I was Mrs, I'd have Richard's surname rather than mine, or he'd be Mr MyLastName, but...

She attempted to apologise at the end because she realised that she had obviously failed from the mismatch between her questions and my answers, but her apology was so damned embarrassing (due to her panicking and making it up on the spot) that I said "no, no, that's okay" just to finish the phone call!

When booking travel, I don't care where on Earth I get connected to, as long as they have the training to deal with the situation effectively. (Honestly, it's travel, of course you get connected to people for whom it's a sensible time to be at work!). However, if your company does not have a dedicated disability assistance line, then that means that every employee who answers the phone has to know how to ask the right questions in a sensitive manner. Unfortunately, that means that either you need to have really good training (repeated frequently), or a really good computer system with a script for employees to follow. Clearly, this was not the case for this phone call.
baratron: (boots)
So I've been saying to myself for a while that I really ought to "sort out" my Paralympics tickets. I know that I'm going to the Wheelchair Rugby on Thursday 6th September with [livejournal.com profile] hiddenpaw, [livejournal.com profile] skibbley and [livejournal.com profile] yoyoangel, but I hadn't sorted out who else I'm going to see what with.

Well, oops and also bollocks. I was really certain that I was going to see the Athletics on Sunday 2nd September. But the tickets I have are actually for Saturday 1st September - which is also the day of Brighton Pride! Also more botheringly, I have two seats together (the wheelchair & "wheelchair helper" seats*) in Block 153 Row 25 - and a single seat in Block 253 Row 55! That's absolutely bloody stupid. I wish I'd noticed that earlier. All of that.

The start time for the Athletics is 7pm, but the London 2012 website reckons I'll need to be at the Olympic Stadium by 5pm to go through all the "airport-style" security charade. Theoretically, this does allow me to go to Brighton Pride at least long enough to see the parade. But it will be a very long day, and stressful, and involve too much train stress, and... argh! Especially frustrating since I found out at BiCon who has the secret "community" wristbands, so I could have got into Preston Park for the paid part of Brighton Pride for Not Much money rather than the Stupid Amount that they want to charge...

It's a bit late to sell the tickets now, especially as two of them are wheelchair + helper seats. And who the hell is going to want to sit on their own surrounded by complete strangers? Argh.

The other events aren't a problem - they are "general admission", although I presume they have a specific place or places to stick wheelchair people. (The map shows a wheelchair park, but not where wheelchair users get parked). The actual event I have tickets for starts at 7pm in both cases, but the tickets are all-day passes and you can go to any event in that venue that has spaces.

So... Who wants to come and see Sitting Volleyball with me on Tuesday 4th September? If we get there early enough, there is the possibility of also seeing some Wheelchair Fencing, Powerlifting or Boccia. (Other events on Thursday 6th September include Wheelchair Tennis, 5-a-side Football and Goalball). I have 2 spare tickets, but it isn't as simple as "the first two people to comment here get the tickets", because I'm also communicating with people via email. The tickets are £15 each, which includes an all-zone Travelcard, plus recorded delivery post of the tickets. (Or Special Delivery if you are paranoid enough).

Post below if you have any questions :)

* this is not actually what the free ticket is called, but I can't be bothered to look up the official Paralympic term.
baratron: (richard again)
Yesterday was busy & chaotic. Long! Features Ginger, Trivium, Steel Panther, The Quireboys, Killswitch Engage & Metallica, also a few other bands. And mud. Lots of mud. )
baratron: (black)
We're at the Download Festival. Weather here has been awful. Can't believe it's supposed to be June - 10 deg C, rain, & a massive wind chill factor, especially up on the disabled viewing platforms.

Yesterday we saw:
* Terrorvision - they seemed to put on a good show but the sound was beyond terrible.

* Little Angels - absolutely bloody brilliant. Sound was amazing & they seemed far more coherent than seems fair for a band who've been split up for 18 years. I'm going to go out & rebuy their first album, which I haven't seen in 16 years, & buy for the first time their other two albums.

*  Opeth - they were better than I thought they'd be. I enjoyed them, despite the vocalist's tendency to scream rather than sing.

We did NOT see Europe because they cancelled 20 minutes after they were supposed to be on stage! Apparently delayed by "bad weather". We also missed Nightwish or Slash because I was freezing my arse off and worried that I was going to get ill. After we got back to the hotel, I had a hot meal of proper food and got into bed, and it was still 10pm before I was warm enough.

Today I have come armed with twice as many clothes as I had yesterday. I have:
* leggings
* thick tracksuit trousers
* legwarmers
* winter lined boots
* a long-sleeved mesh top
* two t-shirts
* two long-sleeved t-shirts
* two hoodies
* gloves, hat & scarf
* a thick winter coat
* a huge orange waterproof poncho
plus underwear and socks.

I am hoping to stay warm even if I look like the Michelin Man!
baratron: (goggles)

Out at the crack of dawn for a course at UCL. The stairlift has broken so the venue is no longer wheelchair accessible. Had to go out on the road and down through a car park.

Honestly, if I took offense about things like this, I'd spend my whole time being angry. Easier to laugh it off. Not my fault ,not their fault, it worked yesterday. If we need to blame anyone, it's maintenance who were told about this before 7am.

Posted via LiveJournal app for Android.

baratron: (aibo)

We are safely in Florida, but the journey was horrible. We:
* did not miss our flight
* the plane did not crash, get diverted or hijacked
* received our luggage at the other end
* our luggage was on time & had nothing missing
* arrived without having received any injuries
* did not get detained in US Immigration
yet Richard still thinks it was the worst flight he's ever had!

Also, we have arrived at the house to find the internet doesn't work. So I've had to buy a US SIM card for my phone simply to get net access. It is UNBEARABLY slow & keeps disconnecting, but better than nothing. However, posting takes forever.

And Richard's paintball friends are faffier than bisexuals! Seriously - I didn't believe it was possible, but they are! Going shopping or out for dinner with them is a nightmare because they can't make decisions about ANYTHING!

And just to make things perfect, I accidentally left my carbamazepine at home, so had to pay $60 to the doctor in a walk-in clinic to get a prescription for 8 days supply. Fortunately, it's an ancient drug (been out since the 60s) and I could get it on generic, so it was only about $21 despite having to pay full-price. Still, that's $81 I didn't *need* to spend.

Hopefully I'll be able to do some sightseeing tomorrow...

Posted via LiveJournal app for Android.

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