helen-louise's journal

My life has been non-stop the past week.

I had to appeal my PIP, complete a PhD project plan for university and get it checked by my supervisor, and fit about two months' worth of socialising into a single weekend. On Friday and Saturday, Grant and I went up to Leeds to see PokeCharms people, play video games, and go to the Royal Armouries. It rained. A lot. We got upgraded from standard to first class on the train to Leeds because of a lack of wheelchair space (OVER AN HOUR's phone calls between me and LNER, who have been sucking particularly hard when it comes to actually following through with assisted travel bookings lately), and I really do need to make sure we always go in first class because it's the only way that Grant has enough room. He isn't just fat, he is WIDE - his actual skeleton is wide, and while he could reduce his tummy size, I don't think that trying to lose weight off his shoulders is at all practical.

On Sunday we saw Tim and Peter like usual, except "usual" hasn't been very frequent lately due to various people's illness and/or busyness. I feel very short of money after two visits to Pizza Express in two days, one of them WITHOUT COUPONS (the horror!).

Yesterday was a day and a half. Trains were non-existent for a couple of hours due to emergency services attending "an incident" between Clapham Junction and Surbiton, which basically stops the entire SWT network from happening. So we got considerably delayed. I realised I was out of the one medication I can't miss a dose of or my head will explode (venlafaxine) and had to call the pharmacy several times, each time getting their rather new and completely useless counter girl who wouldn't/couldn't put me through to a pharmacist because they were busy. Once trains existed again, waiting for a ramp at London Waterloo I managed to drop my phone and by some quirk of physics it bounced off the train floor and into the gap under the train. I did eventually get it back but that delayed us further.

We met stellarwind.livejournal.com in Russell Square and got to the museum to find it was closing early and we had 20 minutes to look at things. It's actually a tiny museum and you can get a good idea of "pickled things in jars" and "bones" in 20 minutes, but we'd expected to have at least 2 hours to look at everything properly. The early closing gave me more time to call the pharmacy. Two more times.

We had dinner at the very lovely little Vietnamese place Pho Hot (great for vegans and omnivores alike - I recommend their vegan pho or garlic tofu on rice, Richard recommends their garlic pork) and dessert at Cookies and Scream. This all went very well. After dinner we arrived at The Garage 15 minutes before doors opened for the annual Ginger Wildheart Birthday Bash only to be told there was a last-minute delay, so we had to wait in the cold for 45 minutes. We did, however, acquire a reasonable place to sit, which is good when you have a wheelchair user plus two people with sensory issues who might get dizzy and/or overwhelmed at any moment. The gig was great. However, I'm not exactly certain about buses in Highbury and Islington because when I'm with Richard we just walk to Caledonian Road (the nearest accessible Tube station), so we managed to miss our stop quite badly. This meant we then missed the direct train home and had to take a train plus bus combo with more waiting in the cold.

It was good to spend time with my Israeli friend who I've known for 15 years and talk to every day, but had never met in person before Friday - but OMG so much stress. I don't even understand how that could all happen in the same day.

Tonight, Richard and I are going to see Cheap Trick and Def Leppard while Grant sits at home playing Elder Scrolls Online (he didn't want to pay £55 for a ticket, which is entirely reasonable - at least Richard and I both get in for that price because he's my free carer). And then tomorrow I get to go and have some blood tests and SLEEP. Oh, and write Christmas cards.

I have been completely useless about asking whether anyone wants a Christmas card this year due to aforementioned busyness, so I am going to go with my usual list. If you have a new address or suddenly don't want a card, please tell me in the screened comment section below (comments which don't have private address information will be unscreened). Also if you aren't on my usual list but want to be added, let me know and I'll see what we can do.

Safely home. Got in yesterday morning and went to bed for 6 hours, then Tim & Peter came round to take me out for dinner, then I went back to bed and slept for another 12 hours. I would now be feeling like a human being if my mother hadn't spent the whole day driving me insane.

Today I had a great Need To Be Alone. While I'm usually pretty extroverted, travel knocks me out and afterwards, I just want to be on my own while I recover. It's at least, in part, a chronic fatigue thing - having to deal with other people and take in unnecessary aural input exhausts me sometimes. But she decided to spend the whole day here, trying to organise our damned house before Richard gets home, and failing to take hints. I don't know how much more explicit I needed to be, since "I would like to be left alone, please" wasn't good enough.

To me, being "left alone" means being alone in my house.

To her, it means that she stays downstairs most of the time and only comes up to bother me once or twice an hour :/ I guess I should have said "Please will you go home", but I only just thought of it :/

So she decided I was being ungrateful for her help, when it was her simple PRESENCE that was annoying me. I've been getting progressively more-and-more bad-tempered, and only calmed down in the hour and a half since she left. And I haven't got anything done all day, because I needed alone-time in order to summon up the requisite attention span to do what I wanted.

Today my stress levels are through the roof, my pain levels are through the roof, and my energy levels are through the floor. What a great combination.

Richard has been a hero over the past few days. Doing two roast dinners entirely from scratch, entirely on his own, including all the washing up two days running. I would not cope without this man. He is amazing.

Yesterday, I spent several hours looking at drawings and photos of topless men, and found it an oddly frustrating and boring experience. I was trying to find the sort of man that *I* find attractive rather than the sort of man which *fashion* thinks is attractive. I never thought I went for unconventional men before, but apparently I do. I was looking for normal men, with a little more muscle than Richard. Instead I found lots of six-packs, and pecs so prominent that they look like breasts despite being made of solid muscle. Ewww. I really do not like the artificially sculpted look.

The reason for this is that I've commissioned an artist to draw my characters Alix & Martin. She's already provided me with one picture, but Alix is so incredibly femme in it that I wanted another picture in which enough of his body is shown to "prove" that he really is male :)

Also, Tim & Peter came round, and we went to see The Hobbit. I would say it is excellent if you like either long-haired beardy men, or New Zealand trees & mountain scenery ;D Personally, I regarded it as severe eye candy for both of those reasons. ( I'm sure some will consider these spoilers. ) Richard was annoyed because I kept stroking his hair and beard and chest hair, but there were hairy men on the screen! It's what happens!

We couldn't be bothered to spend a small fortune on cinema tickets, and we all hate 3D anyway, so we saw the 2D. But it was so obviously intended to be shown as high frame rate, since whole chunks of the film was insanely blurry as 2D. They clearly shot and edited it in HFR, and then just "lost" half the frames. Bah.

Tim & Peter brought us really awesome Christmas presents and I feel guilty that we got them hardly anything. I hate having no money.

Last Saturday (16th) I went to the Joan Miró exhibition at the Tate Modern with Tim & Peter and my mum. He is one of my favourite artists, but I didn't realise until I saw the publicity for this exhibition that he was male - I thought it was the woman's name Joan, not a Catalan spelling of the man's name Juan. That's made me slightly sad because it means there are even fewer famous female surrealists.

The exhibition was awesome anyway. Lots of great paintings, plus a series of 50 pencil drawings called the Barcelona Series, which were incredibly inspiring, because I can draw boggle-eyed toothy monsters like that! (Some of them remind me of the Prince and his cousins from Katamari Damacy!). I often feel that modern art "doesn't count" if it involves a level of skill which I'd be capable of, but apparently I disregard this opinion if I really like it?! Hmm. I also really liked the Head of a Catalan Peasant series, especially the one which is a portrait of Richard.

Afterwards we went to Pizza Express, which is a typical thing to do with Tim & Peter, and walked over the Millennium Bridge to St Paul's Cathedral, where I investigated new and exciting ramps in the ground. Oh, and missed the train that I'd booked assisted travel on, due to the lift in Waterloo Station being broken and no one knowing about it to tell me. Had to go ALL ROUND THE OUTSIDE to get in through the level entrance. Grrr!

On Friday (22nd) we went to Devizes to see Richard's mother's grave and also various alive members of his family, namely his father, stepmother, sister, her husband, and nephew. It was VERY VERY SUNNY and we spent several hours outside, walking round the Caen Hill Locks. Well, they walked, I wheeled. Except I got "hilariously" stuck over one of the narrow bridges while Richard temporarily forgot I existed due to taking photos. There were dozens of people around to help me though. Heh.

On Saturday (23rd) I collapsed in a heap and slept for 18 hours, and then we went to see Wolfsbane. More about that later.

On Sunday (24th) Tim & Peter came round and we played Portal 2, and went to Pizza Express, where a waitress we'd never seen before "recognised us". This may be something to do with our tendency to take plushie animals with us to dinner. We get recognised everywhere we go even semi-regularly for this reason.

On Monday (25th) Marcus (hatter) came round and we went to look at "the trees" in Richmond Park, including my favourite tree. I had an altercation with a bus driver who refused to let me on because he already had "two buggies" occupying the wheelchair space - I pointed out that wheelchairs take priority over buggies and the guardians of the small children moved them out of the way for me to get on. If they hadn't been reasonable, I would have written down the registration number of the bus and got straight on the phone to Transdev (the bus company who runs that route), since it was totally ridiculous of the driver to assume that a wheelchair passenger should have to wait 15 minutes for the next bus when it blatantly says that the space is for wheelchairs! I probably should have done that anyway, but it would have required spoons which I don't have.

Photos of some of these activities to follow in next post.

I haven't posted anything in ages, mostly because I'm tired and have no motivation. I am feeling pretty blah right now, but it's boredom and the kind of situational depression that is "sick of being sick" rather than "proper" depression. My life at the moment consists of sleeping a lot, then lying in bed playing video games - it really isn't very exciting, and I rather want my ability to DO THINGS back. I am playing The Sims 3 and Pokemon White. So badly need to get out to a library. Any library. Reading web forums and fanfic and even eBooks (though I hate the format), but I want more books that I haven't read.

Mind you, there seems to be something of an epidemic of chronic fatigue among my friends at the moment - no idea why, except that lots of people are ill - and I seem to be the least ill of the lot of them. One person I know can't even walk to the bathroom or lift her head up most days, so I'm grateful that it's not *that* bad. My mental tiredness is improving slowly, so I'm hoping to get back to College work soon.

I'm getting out at the weekend, at least. Most days I can walk a bit, so we can go out for dinner locally, or if Richard's here he can dump me in the wheelchair and push me. I'm grateful that he doesn't see this as a chore. We see meeping and gerwinium most Sundays. Last Wednesday we went out with hatter, and yesterday was alexmc's birthday party, which was a lot of fun. It was in Leytonstone, which is almost as far away from Kingston as it's possible to get while still being in London, so it took 1hr 45 min to get there and something like 3 hours to get back (due to night buses), but once we realised we weren't going to catch the last train, we stopped off in central London and got food and watched people. I also acquired a huge pile of books that Alex didn't want for various reasons, though they're mostly Laurell K. Hamilton's attempt at pr0n. (Though I read Skin Trade on the way home yesterday, and the ratio of bad sex to plot is much, much lower than most of her recent books, so I'm pleased with it).

I have two separate instantations of Firefox, each full of links that I've been meaning to share - must acquire some spoons and actually DO THAT.

Three snippets of recent conversation:

Richard (getting dressed & pulling clean underwear out of a drawer): "I think these pants have had it. Look at the elastic! It's not elastic any more, it's undergoing plastic deformation!".

Me: "Hooke's Law in action!"

---

Tim (coming into our room as we were getting up): "Oh, you've got the big bear in bed with you!".

Richard (rolling over sleepily): "This is my bed! I always sleep here!".

Tim: "Perhaps I should have said 'the big bear (white)', to distinguish him from any big bears (brown)".

---

Peter (talking about somewhere they'd eaten recently): "It's quite a smart pub. They have games. We drank a bottle of wine and played Scrabble."

Tim: "Only the pieces were muddled up like they came from several different sets."

Peter: "So you could draw a Q and put it on the board, and then draw another Q."

Tim: "There was one tile which was the same size as a normal Scrabble tile, but had letters on both sides. And another one which was 1/4 of the size of a normal Scrabble tile, with the number 4 on it."

Richard: "For all of those words with a 4 in, obviously."

Tim: Maybe it was from a set of Chemistry Scrabble!

Richard: "You could have double and triple atom score, and double and triple bond score..."

Tim: "But would you be allowed free radicals? That's the question."

Me: "I don't think so. Anything can be a radical - CH3 dot would be too cheaty. It would have to be actual molecules and compounds only."

Richard: "You'd be screwed if you drew helium, though."

Me: "I guess it would have to be no Noble Gases."

Richard: "It would be even better if it used organic notation with all those zigzag lines. You'd be able to add a benzene ring to the end of any atom on the board!"

I am grumpy about the fact I ordered some t-shirts from the US at the end of November to be Christmas presents, and I still don't have them. They were posted on 11th December, with an estimated arrival date according to the US Postal Service of 17th-22nd December. I'm absolutely certain the problem isn't with the USPS at all, or even with the "extreme weather" - rather they are sitting in Mount Pleasant Sorting Office waiting for someone to decide how much VAT and import duty I need to pay on them. I know this is the most likely source of delay because Mount Pleasant stamp parcels when they arrive there, and I frequently observe a lag of 4-5 working days before the parcel turns up on my doorstep! This means Richard, Tim and Peter are all minus one of their presents, and we won't have another postal delivery until Tuesday. Bah.

In contrast, I ordered a monster for my mum to be sent via CityLink. I ticked the "PM service", and was mildly surprised to be woken by the parcel at 11.30am. Checking my email, it turns out it was supposed to have been delivered the previous afternoon, and I had a highly apologetic email explaining the delay. That would have been a turnaround time of less than 24 hours. I know you can't really compare international and domestic mail, but Richard often orders stuff internationally to be sent by courier, and typically the packages arrive within 3 days. A lot of the courier companies manage email or a phone call first, so you can pay the Customs fees by credit card before the parcel's delivered, or have the right amount of cash ready.

Note to self: Unless the price difference is astronomical, or you're not in a hurry AT ALL, always tick the courier option when ordering from abroad. At least then you get a tracking number and can find out WHERE ON EARTH IT IS.

Woohoo, I just finished Rock Band on Expert Vocal :) That goes with finishing it on Medium Drums (the hardest I'll be able to manage - I'm really not built to play the drums) and Hard Guitar. There isn't a Bass solo tour in the first Rock Band so I can't do that, although I *can* play any song in the game on Expert Bass.

I also have the four Flawless achievements: 100% on a song in Expert on each instrument, with the added complication for Bass that it has to be played using entirely up-strokes. OK, so I "cheated" for Expert Drums and chose a song that only has 4 drum notes, but in my opinion that's keeping within the spirit of the rules. No one ever said you had to choose a difficult song, just that you had to play it in Expert mode :P

Also, the band which consists of me (bass) & Richard (drums) & sometimes Tim (guitar) have finished more than half the venues in Rock Band, and we seem to be motoring on at a fair old rate. Which means that sometime soon I'll be able to export the Rock Band songs over to Rock Band 2. Not that there's anything stopping me from doing that now, but some of them are really tedious and you don't get to choose which ones to export: it's the whole lot or nothing. And the last thing I want to do is be playing Rock Band 2 and get some hideous song from Rock Band before I've fully finished playing Rock Band...

Next to be accomplished: dinner, and finishing my Bioinorganic coursework.

It's been a long few days. Let's do this in the Yay and Boo style that other people favour.

Saturday:
- 4.5 hours of work starting at 11.30am.
+ Saw Tim & Peter.
+ Peter is my personal computer fairy, bringing me a "new" laptop for Ludy plus an official Microsoft Office 97 install disc. Don't ask what I need it for (will explain later).
+ Went out for dinner at the nice Italian that's not open on Sundays.
- Wanted to go to sleep before Tim & Peter had even left (impressive, considering that they are morning people and I'm not!).
- It took me/us 5 hours or so to reinstall Windows & put all the new software onto Ludy's "new" computer. Got to bed far too late.
+ It was kinda fun to put music I like & think she'll like and photos of us/things meaningful to us on the computer for her. I get why people like to be computer fairies now!

( Sunday, Monday & Tuesday )

It has been a very pear-shaped weekend, with intermittent good bits. Both Alexa & Ludy ended up staying over at my place on various nights without having previously planned to.

Alexa came up on Friday to deal with the Random Artificial Emergency that occurred; and the traffic was so, so bloody awful because of the bad weather & flooding that the journey took her about 5 hours instead of an hour and a half, meaning that she spent a total of about 6 hours driving as well as several more trying to deal with the emergency. Great "fun". This used up all of her tuits (what Lexas have instead of spoons) as well as all my spoons, so we both collapsed in a heap on Friday night and didn't move much on Saturday. Tim & Peter came round to be social with us in our extremely low-energy state, and we played Killer Bunnies. Alexa was still too tired to drive home on Saturday night, so she stayed here that night too.

I had been supposed to go down to see Ludy on Friday, but the Random Artificial Emergency occurred & messed up my plans, so she came here to be social with us in our slightly less low-energy state yesterday. More Killer Bunnies occurred. Alexa felt up to driving home, and Richard got back from his paintball competition with Chinese food for us. Then we discovered too late that the last train from Clapham Junction to Worthing on a Sunday leaves at 22:23, meaning you have to leave Norbiton at the ridiculous hour of 21:36! This is a full 2 hours earlier than the last train on a weekday or Saturday, when you can leave at 23:36 & still get back. We were not very impressed, and Ludy was understandably stressed out due to being stranded in London without meds & with Sylvia (the cat) stuck in her flat - with food, but no way to get outside. Richard, very nobly, offered Ludy his bed because she was upset and he thought it would be nicer for her to sleep in the bedroom with me rather than in the spare room. (People who know wuzzie will know what a great sacrifice it is for him to give up his bed - it's almost the most important thing in his life!).

Today trains were continuing to conspire against us. We got to Norbiton station with a plan to get the 14:36 train to Clapham Junction then for Ludy to get the 15:23 home. In the event, there was some sort of "signalling failure in the New Malden area", and no trains were happening at all. We got the bus to Wimbledon (as buses were accepting train tickets), went to Costa, and then got on what was supposed to be the delayed 15:17 to Clapham Junction. However, it was so delayed that it decided to go fast to London Waterloo and not stop anywhere else - a decision which was relayed to the passengers only after it had left Wimbledon station. Gah. Also, we didn't have tickets that would allow us to travel via London, but this was not so much an issue in the end as we got straight back on a train on the opposite platform. Ludy eventually got the 16:23 train... which I hope will actually get her home.

So yes. Tiring, and pear-shaped, but with lots of quality time with friendly people.