helen-louise's journal

I've done a bit more work on migrating my lj friends list to a new dreamwidth access list. It is, however, really depressing how many of the accounts on my new list say "never updated" next to them.

It seems that my dreamwidth reading list consists of about 10 people who regularly post. I really miss the chronic health community that I had on lj, but haven't had the spoons either to post on lj to ask where people have moved to, or to try to find a new version here. Must find some spoons. Currently accepting donations.

I still have a couple of hundred links from my mobile browser which I "need" to post on my journal. I expect most of the news-related links are now hideously outdated due to new events. A lot of the queer or disability-related links are still interesting, though.

In exciting personal news, I now have a Freedom Pass! I've qualified for one for years, I just didn't have sufficient energy/motivation to submit the paperwork. And buses in London are free if you're a wheelchair user anyway. However, due to various things (such as the fire at Camden Lock Market), I now need to take the Tube on a regular basis. £8.10 for a Travelcard with a Disabled Railcard is just horrendous (that's like THREE chocolate brownies!), and that was finally enough motivation for me to apply for the pass.

So now I can travel all around London for free, and also on buses elsewhere in England. However, my travel is currently restricted owing to the fact that platforms 7 & 8 at Vauxhall will have no lift until April. Also for the next couple of weeks, trains from Kingston are only every half hour (instead of every 15 minutes), and will be taking 48+ minutes to get to Waterloo instead of 30ish.

I must remember to buy tickets for this vegan food fair. Perhaps after Richard has recovered from the shock of paying for my last-minute train tickets to Leeds - which were already heavily reduced due to aforementioned Freedom Pass and Disabled Railcard...

Home from travelling. Actually, I got in somewhere around 1 pm yesterday and proceeded to pass out for many hours. Woke up at 1 am and (much to my surprise) have been awake ever since. Husband has been snuggled. Boyfriend has been talked to on Skype. He looks very sad, poor thing, but it remains against the laws of physics for me to be in two places at once. Hoping we can have him visit in late June/early July for my birthday.

Super weirdly, I have been physically energetic enough to have emptied the laundry rack, folded the dry laundry, sorted all of the dirty laundry in my suitcase, put on a load of laundry, emptied the clean stuff out of the dishwasher and refilled it. I hope that I will not pay for this tomorrow, though I have A Theory. A theory which involves, of all things, vegan bacon and my ability to get it.

(Gods, I knew that Yves Veggie Bacon wasn't very fatty, but I didn't realise that 3 rashers had only 0.5 g of fat between the lot of them, along with 14 g of protein. Short of actually, y'know, BAKING my own tofu, I am unsure where to get tasty textured fake meat products which are low fat and high protein. Nasty-tasting, weird textured but low fat, I can do. Nice-tasting, well-textured and full of fat, I can do).

Continue to be Unimpressed with Aer Lingus. Will relate the full story later when spoons exist.

I have many photos of my trip to the US to post, when I get A Round Tuit. They are crappy mobile phone pictures, but I cannot be bothered to carry a real camera with me any more. I am a terrible photographer with the best equipment in the world, and I'm more interested in recording memories than attempting to take good shots.

Currently I am worrying about being stranded in New York tomorrow once Delta drop me off there.

It turns out that Aer Lingus are morons. I've had several "incidents" with them this trip and am never flying with them again, but in the meantime they are supposed to be getting me home to London tomorrow.( Read more... )

I did not get around to booking for BiCon. The closing date for accommodation was just too early considering that I have no idea what my health will be doing in July. If I am not much better than I am now, I will be going splat and having to go to bed in the middle of the afternoon, at unpredictable times, and it seems fairly pointless to pay money to go away in that scenario.

Which means you might be questioning how come I can go to Boston next week, but that will be easier since I will have the husband and the boyfriend, both of whom are entirely competent carers for me. If we're out and about and I feel too wobbly to carry on, I can trust either or both of them to get me back to the place where we're staying and/or get food into me. Neither of them want to go to BiCon (they are both way too introverted), and I don't have anyone else who is familiar enough with my current limitations to act as a carer. (I know people who would be happy to ensure I got fed, but I wouldn't want to ask any of them to give up what they want to do at BiCon unless I was paying them, which is a whole other kettle of fish and... yeah.)

I still need to talk to my university, because I was supposed to be going back when term started on 18th April, and I am clearly nowhere near well enough to go back for at least a few more weeks. It's likely that I'll actually go back next term instead, as long as they aren't going to give me grief about the fact you're only "supposed" to have a maximum of 2 years (6 terms) "off" on breaks of study during a PhD course. I'd love to be back, but it would be a waste of everyone's time and my money, since I just about have enough energy to get downstairs on average once a day. The increased thyroxine and vitamin D are helping up to a point, but I am not magically better and dancing around full of the joys of spring.

Today is however a glorious day and I went out to vote for the Mayor of London and London Assembly. No prizes for guessing which party won my first choice, and even my second choice is pretty easy to guess. (Hint: I didn't vote for anyone in favour of leaving the European Union). Politics lately are stressing me out: the London Assembly election today, the referendum on leaving the EU in a few weeks, and the horrible, hateful candidate up for election as President of the USA. Honestly, if it weren't for that nice Mr Trudeau, I'd be hiding under a rock.

Also today I washed my dinosaur. Yay! for clean dinos.

I'm sitting in Starbucks on Wardour Street waiting for Richard to get out of work. Someone's broken the only lift into his building so I can't wait there, and Westminster Council hates wheelchair users so much that I can't easily get around Soho by myself due to a severe shortage of dropped kerbs. So I didn't have a great deal of choice. I couldn't even get to Costa because it would have meant hurling myself off 4 inch high pavements and then driving along the road. I value my teeth a bit too much to risk that sort of thing.

I really need to organise some sort of petition/protest/shoot a video showing Westminster Council just how fucked up their access around Soho and Covent Garden really is. That would, however, require spoons, which are in short supply at the best of times.

I'm sure I owe you guys an "I got home from my travels safely" message, but I have been far too ill since I got back to manage anything. Nothing new, "just" severe period pain combined with my usual back/hip pain, the combination of which has required eating enough painkillers that I've been too sleepy for coherence. Joy! "Conveniently" I had an appointment at the Pain Management Clinic already booked for Monday. But it was hard to fill in the pain questionnaire when I'd been lying flat on my back groaning because of my uterus for days.

So after a week of doing absolutely bugger all, today I've got up & gone into London. Earlier it was sunny but not warm, now it is positively freezing. It was 30 deg C in Canada and I got irradiated by strong sunlight every day - here it is a maximum of 18 deg C in the middle of the day. Positively autumnal, and I miss my summer. Going out for dinner with Richard and his vegan colleague who is visiting from Canada. Richard has been unimpressed by the way his company has been treating this guy, e.g. yesterday they went out for steak even knowing that nowhere that serves decent steak in London also does vegan food at all.

I'm tired. Life could be a lot worse, though.

1) Write a packing list.
2) Pack.
3) Buy travel insurance. Who did I buy travel insurance from last time? There's the company which refuses to insure you if you're bipolar, and then the other company which will happily insure you if you're broken, but not for anything pre-existing. Which is fine - I might be "mentally ill" but I am not going to flip out and hurt myself or anyone else! (Grr. So discriminatory.)

4) Sort out the jury service form. DONE!

5) Fill in and print out Air Canada's amazing wheelchair form several times. I am not being sarcastic - that form is actually amazing and I wish every airline had something like it.

6) Check in for my flight online.
7) Print out my boarding pass.
8) Check in to the HOTEL online. - all done on Thursday night.
9) Figure out where we’re eating on Friday night, since I doubt we’re going to be wanting to go very far from the hotel. DONE! Apparently there is both a pizza place and a burrito place that does vegan food nearby. And Whole Foods is within walking distance.

10) Wash my wheelchair, because it's currently covered in mud from the Download Festival :O
11) Tell 2 x banks that I'm going to another country and they should therefore expect to see card transactions from there. - sorted.

Today has been an exercise in frustration. Booking accommodation while disabled is... difficult. I have to make sure that I can get in and out of the bathroom by myself without immediately forcing my new boyfriend into "carer" mode when he's never even met me in person.

We were looking at apartments on AirB&B and TripAdvisor… the problem is that all a person needs to do to make their flat “wheelchair accessible” is to tick a little box. So there were a whole load of apartments that I could apparently get around fine until it got to the bathroom. Whereupon there were suddenly no grab rails, a bathtub with no seat or dropped sides, and a fixed shower head rather than a detachable one.

The Download Festival is more accessible than most of these condos, and that's an outdoor music festival where you sleep in a tent! But at least it has grab rails in the toilets and enough space to transfer from a wheelchair if you can't walk at all, and roll-in showers with a seat and grab rails.

Also, the most frustrating thing on any website is the phrase “This hotel has accessible rooms that may include the following accessible features”. Just fuck off! I don't care about what you "may" provide, I want to know what you definitely "will" provide!

Grargh.

In other news, I have discovered that Electric Wheelchair Hockey is a thing. That's positively amazing - I hadn't known there were any sports accessible to users of electric wheelchairs before. Wow :)

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 )

So, it turns out that Richard and I have really different ideas about what we want out of a holiday. He wants a complete break from Work, which includes everything: work for money, housework and Being A Carer. Whereas I want to go somewhere exciting and different.

He wants to go somewhere he is familiar with, so he has an internal map of the place in his head. He also doesn't want to be in the situation where "the extrovert has gone all shy, leaving me to do the communication."

This means that we need to go somewhere where the primary language is English, so I'm not reliant on him to manage a language I've mostly forgotten or never learned, and that we've been to before. The existing stipulations of somewhere with a lot of vegan food that is easy to navigate by public transport using a wheelchair and that has bears somewhere that he can go off and commune with still apply.

This greatly reduces the number of cities quite hilariously:

New York? We both know our way round Manhattan, but unless something's changed in the past few years, it's a nightmare to navigate in a wheelchair - they have a ridiculously small number of pre-book only accessible taxis.

Boston? Lots of vegan food, and I've been there in a wheelchair before. A couple of times, even. Not sure about bears, though.

Toronto? Lots of vegan food, and it seemed that a lot of public transport was accessible in 2007 even before I needed that much accessibility. Also Canadians are very polite and helpful so I wouldn't feel awkward asking for help if I needed it. And Toronto Zoo has THREE (3) types of bear. Flying there is damned expensive though.

Somewhere in the Netherlands or Flemish Belgium? Okay, the primary language there might be Dutch, but pretty much everyone speaks enough English to deal with tourists. I'm looking at Antwerp right now because it's easy to get to (Eurostar plus half an hour, and the second train is included in the price of a Eurostar), and it has a good zoo and art museums, although the zoo does only have one type of bear.

Hmm.

Guess who managed to sleep through two alarms and now has to rush across London?

Sigh. And I'm still tired enough to feel nauseated.