bi_pride

BiFest

Apparently there is a BiFest on Saturday 8th April, approximately 10 minutes walk from my house. This is so very close that I really have no excuse not to go. So who else will be there?

The day after, I am flying to the US to see Grant for two weeks, so it will be awesome to see all my bi and/or poly friends beforehand!
aibo, sleepy, cute

New-to-me doctors never understand me

Today I experienced the joy which is seeing a doctor who doesn't know me. Apparently my usual GP is on holiday somewhere warm, lucky woman.

So I was explaining to the doctor that I have had chronic fatigue and pain on and off since I was 13 and I'm now 40, and that I was concerned about the pain in my left knee. The last time I was in this kind of pain was March 2003 when I got diagnosed with hyperventilation occulta. It's a chronic fatigue syndrome type of pain rather than an injury sort of pain.

I explained that I was concerned because I am unable to do very much exercise because of my exercise-induced exhaustion, and now because of this pain I can't even do the small amount of exercise that I usually do. It hurts when I sit, it hurts when I lie down, it hurts when I stand, it hurts when I walk, it hurts when I stretch. Nothing that I know of changes the pain. Since some of my other joints are starting to get achey too, I am concerned.

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bunches

Who wants a Christmas card?

I haven't managed to send Christmas cards to friends for the past two years, due to exhaustion. So I have a pretty big collection of them waiting to be sent now. Who wants one?

There are two options for cards: an amazing winter London scene supporting the Princess Alice Hospice (total: 7 cards) and a cute fuzzy brown bear in a jumper supporting the British Heart Foundation (total: 20 cards). My plan is to send the London cards to people outside the UK and the bear cards to people inside the UK, but this may be thwarted by the mismatch in the number of people I know in each location. I meant to add an option to the poll for people to say which card they would prefer if they have a strong preference, but I forgot - feel free to mention this in comments if you want to.

I do not send e-cards because my purpose for sending out cards is to prove that my imaginary internet friends are real, and e-cards don't prove anything.

Poll #2059472 h-l's 2016 Christmas card Poll-thing

Do you want a Christmas card from me this year?

Yes please.
6(50.0%)
No thank you.
3(25.0%)
No, but I like to receive postcards so I'll give you my address anyway.
3(25.0%)

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 absolutely positive you have it.
3(30.0%)
The same as it was in 2013 but I'll give it again in case you can't find it.
4(40.0%)
Different from 2013 and I'll give it to you in a screened comment.
1(10.0%)
I don't want a Christmas card but my address has changed so I'll give it to you in a screened comment.
2(20.0%)


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 :)

Please be aware that in asking to receive a card from me, you are NOT obliged to send one back. If anyone is able to understand low energy/disorganisation/a total lack of spoons, then I can. I send cards because I like to do it, not because you must reciprocate! Although if you do want to send me something, here's my address.
  • Current Mood
    slowly getting organised
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boots

Still alive.

I am alive. Coping with the hiatus hernia. Perhaps in a one damned thing after another sort of way. Still, the symptoms have all improved dramatically since I started eating much smaller meals and stopping before I feel full.

Now if my chronic fatigue and pain would kindly sod off, I'd be a lot happier. My legs have been useless for weeks now and I need to talk to my doctor about medication. My left knee in particular hurts if I rest, hurts if I walk, hurts if I stretch, hurts if I sit. Frankly, I can't figure out what doesn't aggravate the bloody thing.

It has been a dreadful year all round. Not least of all politically - as Richard pointed out today, when did the language of the far right become the ordinary way to describe things? And that's even without all the normal stresses of being a queer disabled woman that were already present before politics veered horrendously over to Farageland and Trumpsville.

Most of the good things that have happened this year have involved music, travel, or my partners. Sometimes at the same time. I haven't been well enough to travel much, but Grant came here in February, all 3 of us went to Boston in May to see Freezepop, Richard & I went to the Download Festival in June (and got thoroughly rained on), and I went to see Grant at his new home in Rochester, NY in September. We also saw Ryan Tucker and veryfineredwine, for the first time since I went to Boston to pick up wedding rings. I haven't written anything in livejournal about visiting Grant because it was quite honestly the only week in the past six months that I was not completely exhausted and ill. (Also, it was a 12-day trip including travel, so that gives you some idea of the health).

Richard is now in several bands, including one called Amps at Eleven. (There is a heavy metal umlaut on one of the Es, but I can't remember which one). They have actually done gigs recently, which is more than his other two bands are likely to ever accomplish. I sent text messages to everyone who I thought might like a classic rock covers band and be conceivably able to get to Raynes Park on a Tuesday night, but in the end only pilot_moondog came. Still, it was good to see Shaun.

I need to make a list of all the gigs I have been to this year. It seems like the only time I ever leave the house is for (a) a medical appointment, (b) to buy cake, (c) to see a band. It's crazy how many people who live in London I haven't seen in 3+ years. I miss having a fuller life. Doing something other than sitting up at night playing Elder Scrolls Online.

Don't get me wrong. I love my ESO Guild and my friends from our Teamspeak. But I'd like it to be A thing that I do rather than THE thing that I do. One of several ways that I hang out with friends, rather than the only one.

Who's still on livejournal? Am I going to be forced to start a Facebook account just so that I can still talk to people?
Warning: Sick!

Blargh.

So I haven't written anything here since July, which is impressively lax even for me. In short, I have been suffering from the worst chronic fatigue since I lived in the flat and eventually got diagnosed with hyperventilation occulta. I am playing Elder Scrolls Online and chatting to people via Skype and my ESO Guild's Teamspeak channel, but barely socialising at all otherwise, even online. It's just too much effort given my state of exhaustion. I've left the house about 10 times in 4 months.

I have also had an ongoing cold/cough/snot disease thing since June when I caught lurgy at the Download Festival. I get ill approximately every two weeks and stay ill for a week. I have had ongoing digestive TMI since a couple of months before June. And I've been throwing up at least once a day for the past, er, few months.

My GP and I were hoping that it was a Helicobacter pylori infection because that is relatively easy to treat, even if the treatment is unpleasant. But that test came back negative. Nor was there anything particularly exciting in my blood test results. So now I'm waiting for a gastroscopy.

Thing is, I am not at all certain whether there is anything wrong with my digestive system. I am permanently snotty, despite antihistamines, nose spray and eye drops, and the vomiting seems to be related to excessive overproduction of snot. I understand why they're starting by investigating the digestive system, because of all the TMI. But I dunno. My suspicion is that, rather than there being something actively wrong, I'm allergic and reacting to something which forms a major part of my daily diet.

I don't know whether I'm more afraid of the gut biopsy coming back positive for coeliac disease, meaning I'll have to radically change my diet; or negative, meaning I don't have to change my diet (yet) but we still don't know what is wrong. I'm inclined towards wanting to know, because I have been having increasingly bad symptoms since March or April, and it's now November, and I am getting worse rather than better. I was supposed to be back at university by now, not living in limbo.

In exciting news, I got a call from the hospital a few hours ago. Apparently they've had a cancellation and wanted to know if I could come in tomorrow. I was extremely enthusiastic, even after they told me the appointment is at 8.25 am. Unfortunately I can't eat for 6 hours before the appointment, which isn't too bad - but nor can I drink for 4 hours beforehand. This would be fine if I wasn't nocturnal, but being thirsty makes me anxious. I am not looking forward to having my anxiety provoked. Nor am I likely to be able to sleep given the time of day of the appointment - I will be too anxious about not waking up on time.

Good thoughts, and comments about how trivially easy and unstressful your gastroscopy experiences were, would be welcomed at this time.
aibo, sleepy, cute

Too much stuff happening

So tired. It's been a long week.
  • Wednesday - Stayed up way too late to run a new dungeon on the public test server of Elder Scrolls Online on Wednesday.

  • Thursday - Meeting with ZOS devs to talk about the new dungeons. So much talking. I still haven't written up my notes from the meeting for my Guild, and I hope I can mostly remember what was said.

  • Friday - Went to see Ginger Wildheart and Hey! Hello at a funny little venue called the Brooklyn Bowl. It's a bowling alley (?) inside the big o2 tent (formerly the Millennium Dome) which also has bands. Kinda weird but it was very accessible, since the entire o2 was built post-Disability Discrimination Act. They were playing along with another band called Ryan Hamilton & The Traitors who were so good we wanted to get their CD, but it was sold-out!

  • Saturday - Work for my mother, and a huge row because she was being unreasonable (at least in part due to a headache).

  • Sunday - The joys of a new washing machine! We bought our washer-dryer, fridge-freezer and dishwasher when we moved into this house in June 2004, and they've lasted well. The fridge and dishwasher have never needed any work, but the washing machine needed to be repaired five times, with issues ranging from worn motor brushes to a broken wire in the motor controller to a sheared bolt holding the drum in place. A couple of months ago, it stopped drying clothes, and Richard determined it needed a new condensing unit. This wasn't a huge problem considering it's summer and we can dry clothes overnight on the rack. However, then the drum stopped spinning altogether. Richard checked the brushes and the motor controller, and determined it would need a whole new motor.

    Thing is, although he could fix it, there reaches a point in an appliance's lifetime where it seems like throwing good money after bad. Putting a new condenser and a new motor into a 12 year old washer-dryer that seems to be gaining a new issue every couple of weeks? Yeeaah. Also, the sheets for our new bed are enormous, and heavier than our machine was supposed to be capable of taking.

    We've been very happy with Bosch, most of all the fact that you can order parts to work on the appliances yourself without needing to be a registered dealer (very useful when you have your own in-house engineer), so we just went out and bought another of the same without any shopping around.

    However, I am currently struggling with the fact that this new washer-dryer is trying to be more intelligent than I am. The old one had three knobs on the front: water temperature, drying time, and programme. This new one has one big knob and a load of buttons. It has fewer temperatures available for washing, and far less control over drying time (with the options being 15 minutes blow around, 60 minutes with heat, 120 minutes with heat, or "auto"). I'm kinda annoyed that we won't be able to wash our socks on 50 degrees C any more, and that we won't be able to dry the clothes for 25 minutes before putting them on the rack. At least, not without some effort.

    Then on Sunday night, I had a huge argument with Shifty, which continued into Monday and only got sorted out on Monday night. We're okay now, but it was really difficult - there was a lot of him not understanding nuances of emotional stuff because of his autism, and me not being able to find a way to explain it better because it's "just obvious" to a neurotypical person. (Maybe even to autistic people with a bit more experience in relationships.)

  • Tuesday - Woke up too early with a sore throat. Hoping it's just from crying too much. More work for my mother. Photoshop. Argh.

  • Today - woke up too early again, still have a sore throat, sincerely hoping it is allergies and not an infection. Wrote a rant about Funding for special education. Now have to email Shifty's crush to tell her some things which he doesn't seem capable of conveying, as well as confirming that yes, we really are poly. Argh.

So yeah, it's just been exhausting all round and I am ready for a break. Which I don't think I'm going to get anytime soon.
boots

Adulting! (Not adultery)

Today I have been ADULTING like a PRO. I called the Student Loans Company about the threatening letter which they sent me. To be fair, I have an income-contingent student loan, and they received information from the Inland Revenue to say that I was no longer employed, so they wanted to know where I got my income from, on the basis that I might be secretly earning a small fortune and secreting it away somewhere.

I still have to fill in the damned form, but at least they know that I called them and I'm not trying to avoid paying back the loan.

I also called EDF Energy to get moved onto a fixed-rate tariff that will cost £76 per month instead of the variable-rate tariff which costs £100 per month which we have been on because I didn't have the spoons to deal with it before. Now I am drenched in sweat and I don't think it's only because of the weather.

Why is adulting so exhausting? I mean, neurotypical non-depressed people manage it all the time.

Alexa thinks it's because of tuits/spoons. Adulting uses lots, and they have more of them. I think that explains how they're able to do it more easily, but it doesn't explain why it should take so many bleedin' spoons to do pretty straightforward tasks. I mean, it shouldn't be that difficult to either call or go through the website to change your energy tariff, when you're already being a lazy git and staying with the same energy company because you don't have the energy to start looking around for better deals. But apparently it is? (Actually, I did forget you could do it through the website. That would have made it a lot easier.)

I also still have to deal with Student Finance England and my university, but this also requires dealing with my doctor. I need proof that I've been too sick to be studying for the past year as well as proof that I am now recovered enough to go back. It's a bit too much considering I've been revoltingly ill with bronchitis for the past couple of weeks. I have recovered enough to only need double my usual asthma meds, rather than 6-8 times my usual dose plus oral steroids. But I've only been out of the house 5 times since 14th June, and two of those were doctor's appointments.

Blargh blargh blargh. So much ill. So little energy.
angry, Buttercup

Some petitions I have signed today.

UK Government and Parliament Petitions: EU Referendum Rules triggering a 2nd EU Referendum. To be fair, this doesn't have a hope in hell of succeeding. But I had to do something. Apparently, Nigel Farage said "In a 52-48 referendum this would be unfinished business by a long way". Apparently, if it's 51.9:48.1 in the direction he wanted, it doesn't count as unfinished.

Remember, as Rami Ismail @tha_rami wrote on Twitter:
Just in case somebody argued the majority of the UK voted leave: they didn't.

37.5% voted Leave,
34.7% voted Remain.
27.8% did not vote.

In other news regarding that odious individual, Nigel Farage, he said ‘we won it without a bullet being fired’. Given the tragic death of Jo Cox MP last week, that was a terrible thing to say and he needs to be held accountable for this. 38 Degrees: Nigel Farage: Say sorry for that shocking comment regarding bullets.

The Leave campaigners have blatantly lied. The Guardian: There are liars and then there’s Boris Johnson and Michael Gove - by Nick Cohen. So I signed two petitions about this:

Change.org: Petitioning Home Secretary and Member of Parliament for Maidenhead Rt Hon Theresa May MP. Make it a criminal offence to knowingly mislead the public to achieve electoral gain.

38 Degrees: Expand the powers of the Electoral Commission against misinformation.

and also, related to a referendum promise which now looks unlikely to be kept:
38 Degrees: Keep the promise of £350 million for our NHS. I don't actually believe we do pay £350 million a week to the EU, let alone that all of this money will be freed up if we leave (for one thing, the various regions which currently claim EU funding will need to be given that money. Sadly, the Leave vote was strongest in areas most dependent on the EU).

And some things that I feel strongly about:
Change.org: Mandatory teaching of Politics in British High Schools. Because it seems that a lot of people didn't understand what they were voting for or what leaving the EU would mean. There are still a lot of people in this country who seem to believe that we directly elect our Prime Minister!

38 Degrees: Guarantee no change in the status of E.U citizens currently living in the U.K.

Change.org: Petitioning Boris Johnson MP and David Cameron MP. Government to ensure LGBTQ+ rights do not suffer as a result of the referendum.

And I don't care if you think this is a joke. I am very serious. Change.org: Petitioning Mayor of London Sadiq Khan. Declare London independent from the UK and apply to join the EU.

Still living in the hope that if Scotland leaves the UK and (re)joins the EU, that I'll be eligible for a Scottish passport.
what ho peasants!, boris

Don't talk to me about the Referendum

I am very stressed, anxious, angry, and upset right now. I literally cannot believe what has happened. I honestly don't know anyone who voted to Leave.

My friends - well yes, they tend to be left-wing, liberal, anti-racist Europeans. Of course they all voted Remain. But even my family voted Remain! My dad's family suddenly remembered that they are immigrants, and that they are in favour of a free market. My 89-year old grandmother who is horribly racist despite having black grandchildren and great-grandchildren - even she voted Remain! Apparently because she doesn't like Boris Johnson and doesn't want him in charge of anything, but that's still a better reason than a lot of people who voted Leave.

According to the front page of the BBC News site, 17,410,742 people, being 51.9% of those who voted, chose to Leave. Meanwhile 16,141,241 people, being 48.1% of those who voted, chose to Remain. That isn't a clear mandate for anything! Even if the figures were reversed, even if Remain had narrowly squeaked through... I would still be saying that the country is divided, that it isn't a clear mandate either way.

What bothers me is this. My mum manages a block of flats for retired people. In order to make changes to services offered, she needs to follow a Code of Practice which states that to make changes to the status quo, all of the following criteria must be met:
1. 66% of the votes received must support the proposal,
2. 51% of the total number of leaseholders must support the proposal, and
3. not more than 25% of the total number of leaseholders are against the proposal.

Leaving the European Union is many, many orders of magnitude more important for the country than any change to services provided by a block of retirement flats, and yet a 3.8% majority is apparently enough to make the change!

I just can't take this in.