helen-louise
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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.

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Viva went swimmingly. The examiners had already decided that my upgrade report was good enough to pass, so it was an hour and a half of how to improve it before the final thesis and thoughts about what the rest of my PhD research should look like. Nice and relaxed.

Now I need to sleep because I utterly failed to do so last night, despite many hours lying in bed.

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Current Location: On the 59 bus, going down Upper Woburn Place
Current Mood: jubilant jubilant

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So, tomorrow I have the viva (oral examination) for my upgrade report, which I am looking forward to about as much as anyone with anxiety would.

"Normal people" come out with comments like "Everyone gets anxious about exams". And I'm not saying that they're wrong. However a person without the actual psychological condition called anxiety is highly unlikely to get into a state where they can't function because they've lost one specific notebook, and it's 5 am, and they've been looking for an hour, and their partner is urging them to give up and work on something else in the meantime. And - get this - they even have all of the information contained in that notebook in other notebooks which aren't lost.

But they can't stop looking because there's a misfiring neuron in their brain which won't let them concentrate on anything else except the fact that the notebook is lost and so they don't have the material to look over and so they're going to fail the exam.

Yeah. That's just not a thing which happens to people who don't have anxiety. Parts of it, maybe. But the whole irrational chain of catastrophe? No.

It actually turned out not to be the end of the world at all because in rewriting the notes, I realised something that I hadn't worked out before, and now if they ask about it tomorrow I'll be prepared. But I could have done without that sort of episode of stress.

I feel fairly prepared now, but I don't like the idea of the time I need to get up in the morning. The exam is at 1.30pm, so I need to be on the 11.48 am train to make sure I have loads of time in case of, I dunno, snow. I REALLY don't think it's going to snow but my mother insists it's on the forecast, so getting up super-early in case the trains are more screwed up than usual it is. Urgh. My hair feels absolutely horrible but I do not have the spoons to wash it. It's do the exam with dirty hair or have clean hair and be too tired to function. Really, they are not examining me on my hair.

In related news, it turns out that the reason why my Department hasn't been following my Individual Student Support Agreement (ISSA) for the past year-and-a-bit was because they didn't have it. Somebody screwed up. I even know who the somebody was, but it's pointless yelling about it now. However, that was a big load of stress on Tuesday which I didn't need! The College is now using something else instead of an ISSA so I have to make an appointment with the Disability Office to get that sorted out, but not before tomorrow.

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Current Mood: stressed stressed

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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.

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Current Mood: okay okay

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I'm afraid that I utterly, utterly failed to send out any Christmas cards this year. I was supposed to be doing them on 18th December, but then I found out about meirion and spent the whole day crying instead. Then I promptly went down with the kind of cold which turns your brain to snot and spent several days doing nothing more strenuous than lying in bed. I dragged myself out of bed to have Christmas dinner with my parents and went back to bed before pudding (which, if you know me at all, is quite shocking).

I'm better now and was going to send them out as New Year cards instead. I wouldn't have to change anything because they're American and thus extremely non-specific about which particular holiday they're for, but - in some sort of wonderfully modern irony - my printer is refusing to print because it's decided it needs a new yellow ink cartridge. Even though there was nothing wrong with the yellow ink cartridge the last time I finished using it, and even though the labels are in black ink only. Having to write twenty or so addresses by hand is just beyond my ability to cope.

So I've sent cards to the handful of relatives who would complain if they didn't get one, and I am just going to have to apologise to the rest of you. It really isn't that I don't care about you, it's that I was too upset about a friend who I hadn't been in contact with enough lately, and then too ill to cope. I'm going to keep the cards and send them out next year.

My plans for New Year's Eve are glorious. I am going to London to buy cake and then I am going to sit at home playing Elder Scrolls Online. Nice and warm, and no need to be around drunk people on the train. One of these years I'll try to get an invite to a party where I can stay overnight, or host people here instead, but one of these years I won't be ill and exhausted.

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Current Mood: blah blah

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My generic holiday cards with an awesome BEAR on arrived on Saturday, meaning that it's well and truly Time To Get Organised.

If you believe the Royal Mail, it's already too late to send cards almost anywhere to actually arrive in time for Christmas, but the earliest I've ever managed to ask for addresses was 8th December. While my cards usually arrive by January 3rd even if they're going halfway round the world :)

The options are a generic holiday card with a photograph of a live yearling BEAR, or nothing. This is because my purpose for sending out cards is to prove that my imaginary internet friends are real, and e-cards just don't do that for me.

Poll #1992192 h-l's 2014 Christmas card Poll-thing

Do you want a Christmas card from me this year?

Yes please.
10(83.3%)
No thank you.
2(16.7%)

The following partners, children, housemates and pets should be acknowledged on the card:

My address is:

The same as it has been for many years so I'm sure you have it.
5(45.5%)
The same as last year but I'll give it again in case you can't find it.
4(36.4%)
Different from last year and I'll give it to you in a screened comment.
1(9.1%)
I don't want a card but my address has changed so I'll give it to you in a screened comment.
1(9.1%)


All comments are screened so you can leave your address below. Please do it a.s.a.p. so the cards have some chance of getting to you :)

Also, feel free to receive a card from me without feeling obliged to send one back. I send cards because I like to do it, not because you must! Although if you do want to send me something, here's my address.

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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.

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Current Mood: sore sore

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I do not recommend arthritis of the spine. I don't really recommend arthritis in general, but there's something about having it in your spine that's just extra evil.

I had some injections done in January which basically fixed the problem entirely for a few months. Over the past few weeks, I have become increasingly aware of it returning in force. Yesterday things were so bad that I had to miss a lecture that I wanted to go to, because I hurt too much to be able to sit through the class without having to wriggle and fidget and stand up and change position so frequently that it would disrupt everyone else. Normal painkillers do nothing for this type of pain.

Now I don't know what to do. I have been to my Pain Management F/Up appointment, which lasted all of 10 minutes because the specialist and I were in complete agreement that I needed another set of injections. But the Pain Management Clinic admin are completely useless and gods only know when that'll actually get scheduled. I could go back on gabapentin, but I'm afraid to lose my mood control. I've actually been feeling pretty cheery over the past month or so, still a person with depression and anxiety but with those issues mostly under control, and I'm extremely reluctant to give that up.

Then again, if I'm in this much pain and discomfort, I'm not going to be able to get my work finished off because I can't actually sit still for long enough. And my department have made it very clear that I'm not getting any more extensions.

This is the kind of juggling that you have to do if you have multiple chronic illnesses which interact. No one wants to be in constant pain, but no one wants to turn into a crazy person either. Better pain control vs worse mood control is not really a good equation.

I shall, of course, be consulting a medical professional at the earliest possible opportunity. I'm not really looking for advice, because none of you have my biochemistry, or are taking my particular mix of medication. But I certainly need *hugs* and comforting pats over the internet.

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Current Mood: pensive pensive

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My theme for the day is Being a Responsible Adult. Look at me deciding to not buy Pokemon Alpha Sapphire until after my Big Deadline at university! Look at me booking a doctor's appointment at the contraceptive clinic to get my coil checked! Look at me sitting down to do homework for tomorrow's class, even though I'm not taking it for credit!

Now, if only Being a Responsible Adult stopped me being so damned tired, I'd be delighted.

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Current Mood: tired tired

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...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.

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I'm sitting in my College bar trying to work out who (if any) of the people here are part of the LGBT society. The closest I can find so far is a woman who looks like bunnypip, but she might "just" be a social scientist and not queer as well.

Current Mood: having social anxiety

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Urgh. I switched on my computer in the hope I might write something, but I just don't have the spoons. I've been like this for weeks - not really depressed so as you'd notice, but also way less social and more introverted than is normal for me, and way less able to get down to things which require organisation.

Also I haven't been to sleep yet because I haven't been able to. Bah.

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Current Mood: indescribable indescribable

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Happy Bi Visibility Day to all my bisexual friends!

I remember when I was 21, a random person on the internet told me there was no such thing as "bisexual", it was just a phase I was going through before settling on gay or straight. Well, I'm now 38, and I haven't settled yet :)

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Current Mood: okay okay

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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.

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Current Mood: aggravated aggravated

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I feel awful. Woke up after about 6.5 hours sleep and couldn't get back to sleep. Richard has booked a week off work (!!) from 15th-19th September so I am supposed to be finding somewhere to go for some or all of it.

I want to go on holiday somewhere that is Not Here, and ideally in another country altogether. I would like to combine this with viewing of Bears and/or Wolves. That is about the best I am capable of in my current state of brain.

Richard would quite like to have some time at home to Tidy Up His Workshop, although that doesn't have to be in that week.

We don't have very long in which to figure out where we're going.

I was looking at Ely in Minnesota, because it is where both the North American Bear Center AND the International Wolf Center are, but it looks like there is absolutely no way to get around without a car. Actually, I can't even figure out how to get there from the nearest airport (Duluth), 115 miles away!

I am not good at adjusting from European city geography to middle of nowhere tiny North American town geography. (Seriously, a town with less than 4,000 people has two newspapers? That just breaks my brain!) Also, there is almost certainly nowhere near enough time to arrange something as complicated as that.

Which means either somewhere in Europe, or a major city in North America. Although I'm not aware of lots of bears and/or wolves around major cities in North America, with the exception of Toronto Zoo. Hrm.

Anyone have any smart ideas?

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Current Mood: blah blah

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Also, I am "impressed" that I just wrote a rant about my uterus instead of spending the energy on:
(a) writing up what I did at BiCon
(b) writing down the list of books I've read recently and what I thought about them
(c ) writing down the list of bands I've seen recently and ditto
(d) anything else of social or political importance.

I'm sure this says something. I'm just not sure WHAT.

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My uterus hurts. It doesn't hurt quite as much as it did on Monday, when I got my old copper coil taken out and a new Mirena coil put in, nor as much as it did on Tuesday when the strongest over-the-counter codeine was barely touching the pain, but it's definitely hurting a lot more than I like.

I believe that the theory is to get all of the pain out of the way now and then it won't hurt much for five years. Especially since copper coils are known to aggravate period pain and the Mirena is supposed to lessen it, but it's like my usual menstrual distress ramped up to ten. Super cramps, dreadfully aching legs, needing to pee approximately every 5 minutes (okay, once an hour), and severe digestive TMI. And this despite the fact I am eating bucketloads of "happy tummy pills" for the over-40s. And I'm only 38! (The "over-40s" pills contain 6 strains of intestinal bacteria rather than only 3).

But it's just that it's gone on so long. If you don't already have a Mirena, then they insist on putting it in during or immediately after your period. And I had the worst bloody period that I've had in years during BiCon. A full week of really bad pain and extremely heavy bleeding by my standards. (I recognise that "heavy" for me is "average" or even "light" for some poor female-bodied individuals, but that doesn't make it acceptable!) And then followed up by another few days of pretty much the exact same symptoms.

Bored of hurting now, can I stop soon?

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Current Mood: sore sore

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So, apparently there was a bisexual man who couldn't come to BiCon this year even though it was in Leeds, where he lives, and even though he has mental health problems and would have really benefited from our supportive, disability-friendly community. That's because the Home Office has thrown him into a detention centre and are in the process of trying to deport him back to Jamaica, where he originates from. Even though his mother, partner, and baby are all here and sending him away from them denies his basic human right to a family life.

Apparently the judge in the court case doesn't believe he's bisexual, because his partner is a woman.

Y'know what? The partner I live with is a man. I'm still fucking bisexual. I would still be in fucking danger if I were to end up in a country that doesn't like queers.

I don't know if Jamaica is dangerous (although the comments on this Jamaican newspaper article are quite telling), and that's not the part that makes me angry. It's the fact that the judge has decided bisexuality isn't real, that if someone's long-term partner is of the opposite gender to themselves then they must be lying about having same-sex attractions.

That is just not right. Bisexuality is as real as any other sexual orientation. I happen to have a long-term relationship with a man, but I also very much like women and genderqueer people and non-binary gendered people. My partners and ex-partners and potential new partners are of a variety of genders and biological sexes, and that's just how I'm wired. If you look at me as a woman married to a man and declare that I must be straight, then you're eroding a big part of my history and my future. That would make me angry.

But you know what? Go ahead and do it if you want to, it won't actually harm me. My life isn't in danger, because I was born in the UK and have British citizenship. This poor sod's life is, because he wasn't, and our supposedly so-tolerant country can't accept that bisexuals are actually a thing.

I shall be writing to Theresa May as soon as I have acquired sufficient spoons. In the meantime, please sign this petition in support of Orashia Edwards, and if you can afford it, send some money in support of his legal costs.

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Current Mood: infuriated infuriated

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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.

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Current Location: on a train between New Malden and Raynes Park
Current Mood: stressed stressed

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Got a letter today from Kingston Hospital about an appointment they've made for me. Apparently it's a "Pain Management F/Up".

Erm... :)

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Current Mood: amused amused

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helen-louise
User: baratron
Name: helen-louise
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