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helen-louise
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.

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Went to the doctor yesterday. My TSH level, which was apparently 1.93 uIU/mL in October 2015 is now up to the truly appalling 4.13 uIU/mL. Suddenly my need to go to sleep in the middle of the afternoon makes sense.

TSH is thyroid stimulating hormone so the higher the number, the worse your thyroid is responding. Technically the "normal" range goes all the way up to 4.20, but the therapeutic range for thyroxine supplementation is much lower. I think they try to keep it no higher than 1.5.

So that alone would be a good explanation for exhaustion, but also my vitamin D has gone splat again. It's currently around 67 nmol/L. Since I am on a medication which destroys vitamin D, I take a supplement all the time. But when I was having tachycardia, I decreased the dose. Apparently this was a big mistake.

In unrelated news, I have a new phone and am struggling horribly with the official lj client for Android. What do you people use?

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Yesterday and today, I've been wanting to talk to people but I have absolutely no spare energy with which to do so. I have reverted to taking 2000 iu of vitamin D per day as of today, because I'm shattered and not convinced that the 400 iu tablets are doing enough.

I'm supposed to be going back to College in 10 days or so, but I haven't sorted out any of the paperwork yet because it involves too much effort, and circular situations where I need a form from A to give to B and a form from B to give to C, but I can't get the form from A until I have the form from C. Gah! And right now, I am sufficiently exhausted that I am not even sure if I'm up to going back for this term. I really can't go back and then immediately have to take time off again, but I do need to get things like Disabled Students' Allowance in place again if I am going back.

Mental health has not been good in my little family this past week. We have all been depressed for no particular reason. Richard has been anxious, Grant has been tearful, I have been having nightmares. I know that I need to have my next trip to see Grant arranged as soon as possible, so it's settled and I have something to look forward to, but I just don't know when will be convenient. Since this year is a round-number birthday, I was hoping to do something special for it, but I am increasingly feeling that my original plan (go to Iceland again) isn't what I want to be doing this year.

While organising trips to various places, I have to decide if I am going to BiCon this year. I feel that it would be beneficial to me to be in bi space considering that I currently appear to the outside world as straight twice over, but it involves energy and organisation which I don't quite have right now. The deadline is apparently pretty soon though. Who else is going?

In other news, I have found some mysterious photos on my computer. I mean, they are patently photos of me and Richard hanging around in our hallway in January 2012, but it is mysterious as to why we took them. They are all exceedingly yellow and would require considerable correction in Photoshop to fix. I thought maybe Richard had bought a new camera and we were testing it out, but the numbering starts at IMG_6562.jpg. Weird!

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I haven't had much energy for livejournal (or indeed, any sort of extended writing) the past few weeks. Today I was planning to write about what we did with Grant while he was here, but I got caught up in chatting on irc and have burned through my communication spoons. Urgh.

So have some more pictures:

The three of us on the 37th Floor of the Sky Garden at 20 Fenchurch Street, London. 2016-02-21
On the 37th Floor with London behind us, 2016-02-21

Here is a another picture taken at the same time in which I exhibit a seriously smug face.

We found the Poly lift!Collapse )

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Grant is visiting from the US. It's his first time out of North America and everything here is very very strange. He first got confused on the bus back from Heathrow because of how twisty the streets were, compared to the grid patterns that he's used to. "It's like driving around a Paisley!" he said.

We have done various things, including cuddling, eating, playing Elder Scrolls Online (Grant is such a nerd that he brought his non-laptop computer. Yes, a mini tower) and looking at museums and other such tourist "attractions". I will write more about that when it's not 3 am and we're not supposed to be up in the morning.

I'm sure that what you actually want to see are the pictures of us loving each other.

A couple of days after Grant arrived, in our house. Picture taken by Richard.
In our house. 2016-02

Two more pictures!Collapse )

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Yesterday was my 4th wedding anniversary with Richard and our 18th anniversary of being together. Richard bravely staggered out of bed where he was busy dying of the man-flu, and we put on fancy clothes and went out to the Secret Surprise I had booked. This being vegan afternoon tea at La Suite West hotel, which is near Bayswater/Queensway.

Pictures!Collapse )

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Last night I dreamt that I was a werewolf and that my father was the Alpha of our pack, that he got kidnapped and I had to invoke the magic of the pack to rescue him. So far, not very surprising - I've been reading my way through Patricia Briggs' modern urban fantasy series again. But why was my father Nick Clegg?


I did not win NaNoWriMo. Actually, I barely wrote anything. Actually, I've barely been writing anything, anywhere. My new friend from Elder Scrolls Online was sad that I hadn't added her to my livejournal friends list yet and I said "I haven't written anything friends-only recently!". Not enough coherent brain to finish all the half-written stuff flapping around the place. Literally all I've written recently is a description of all my ESO characters and a writeup of an ESO Guild event.


I am sad about Lemmy and David Bowie's deaths, and very sad about Alan Rickman. With Lemmy and Bowie, I'm sad for my friends who were fans of them and for all the musicians I know who were influenced by them. Whereas I was actually a big fan of Alan Rickman myself. We watched Galaxy Quest at the weekend, mostly because we couldn't find the Dogma DVD in the mess that is our house. Fuck cancer all round, anyway.


My mattress is completely knackered, so I am waking up most days with extreme back pain and sometimes back and hip pain together. Woo. We have ordered a new one but it's going to take 8-10 weeks to arrive, since apparently companies don't keep "super kingsize" (6 foot/180 cm) mattresses in stock. Don't even ask how much it's costing. Dunlopillo latex beds for people who are allergic to dust mites are Not Cheap. We tried lying on Tempur mattresses (which are even more expensive) but found them very weird and far too soft. I thought I might like them if I had a pain issue where it hurt for me to be in contact with the mattress, but as it is I roll over far too many times to be on a mattress which completely contours to me, and fighting the mattress would simply make my back hurt more.

In related news, I have been back to the Pain Management Clinic. There is nothing wrong with my hip (which I suspected anyway) and they are going to do some more facet joint injections into my evil sacro-illiac joint. I look forward to being in less pain soon.


Shifty is coming to visit me on 8th February for two weeks! Yay!

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Since I was ill with flu in December, I didn't manage to write about the very, very awesome thing that Richard did. We are fans of a musician called Ginger Wildheart - indeed, I have been a fan of his since 1994. Every year he does a gig on his birthday, which is 17th December. It's a very non-standard gig with a rotating cast of musicians, called the Birthday Bash.

This year it was postponed because Ginger was in hospital with depression, which sucks. Fortunately Ginger is getting better and the Belated Birthday Bash and Hey! Hello! tour are back on in April.

Richard knew that a lot of fans were flying over from elsewhere in the world and wouldn't have anything to go to. So he pulled together a pub meet. He spoke to a couple of venues and the guy who runs the Boston Arms in Tufnell Park said it would be no problem at all to host us. Even more impressively, Richard got Hollis and Davey from Love Zombies to play an acoustic set. (Hollis is also the new singer of Hey! Hello!). There were something like 50 people present over the course of the evening, including Ginger's legendary roadie Dunc.

I am just very, very proud of Richard for putting this event together, especially considering the short notice. Even more so considering that he is an introvert who finds dealing with people difficult. I doubt he'll ever organise anything this big again - it was a lot of stress for him - but I'm really pleased to know that he can.

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I'm pretty certain I have flu. This is despite having had a flu jab in October. I've been ill since Friday night with a temperature that stays over 38.0 deg C (about 100 deg F) despite taking paracetamol/acetaminophen to bring it down. I am coughing, sneezing, and aching all over, and over the weekend I also had nausea, vomiting, and diarrhoea. The digestive issues have mostly settled down now, but everything else is still present.

Woke up this morning with a temperature of 39.7 deg C (103.5 deg F) and considered calling the doctor or pharmacist because I was so very out of it that I felt scared. But half an hour after taking paracetamol, my temperature was a 'mere' 39.2, so clearly paracetamol was still managing to be antipyretic. I woke up later feeling absolutely freezing and was convinced that my fever had broken, but it was still 38.3 deg C. Eww.

The problem with paracetamol is that it's hepatotoxic enough that you can only take 4 doses a day; which considering it wears off after 5 to 5.5 hours, doesn't cover the entire 24 hour day too well. If I could take NSAIDs then I'd alternate paracetamol with ibuprofen, but NSAIDs make me stop breathing, which would likely be worse than having a fever :P

Have texted my parents and Tim & Peter to cancel Christmas. Apparently flu is contagious for 7 days after symptoms start, or longer if you have a bad immune system, so I will still be contagious on Friday. And frankly, I don't wish this on anyone. I'm nowhere near as ill as I would have been if I hadn't had the vaccination, but I still feel worse than I typically do for a cold - ill enough that I wish I could just sleep until it's gone.

At this point, I am actually glad that Grant is having to work all over Christmas and New Year, since it would be horrible to have him visiting while I'm this bloody sick. I just hope that Richard doesn't catch it. He's coughing his lungs out, but then he's been coughing since the last cold he had about a month ago.

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I am. Didn't start until 11th November because of illness, so I've no idea if I'll actually finish or not. But I feel accomplished anyway because I got past Chapter 16 in my story, which I have been blocked on for almost two years.

Honestly, Chapter 16 and I were not friends and I am so pleased to have got myself past it!

Since I started so late, all my NaNoWriMo stats are screwed up. Especially the "At This Rate You Will Finish On", which currently says May 11, 2016. I kinda hope I'll finish before that, or I might just go insane.

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So my friend kshandra and her husband gridlore want to go on holiday for their 25th wedding anniversary. But it's going to be difficult because Doug has worst health than me. I mean, seriously, the poor guy has had cancer twice (plus another malignant growth that was small enough to be removed by a dermatologist) and has suffered horrible side-effects from the anti-cancer drugs which saved his life. Like his jawbone started rotting away and his teeth fell out so he couldn't eat, and then he got a potassium deficiency and almost died, and he has no spleen so he can't fight infection... And it really says something when you're talking about your friend's husband's bad health to your other friends, and the list of problems is so long that you actually forgot that he'd had a stroke.

Anyway, they are great people, if perpetually short of money, and they deserve the chance to have something fun happen to them for once. So they want to go to Istanbul. It won't be cheap - the travel insurance alone will be a small fortune - but they have friends and friends of friends who can help. Even US $5 will help. If you're able to give then here's the link, if you can't then would you consider boosting the signal? I've known Kirsten for something like 13 or 14 years, I can personally vouch for the situation being genuine.

Also, some of my friends have written a book. Purple Prose is all about Bisexuality in Britain. I'm sure a lot of it will be relevant to bisexuals outside of Britain, too. It's only £5 for an e-book or £15 for an e-book and paperback, so please buy one if you can! The closing date for the funding is 11th November.

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It seems to have been ages since I've posted anything in livejournal. I have been very short of energy and not doing much except for playing Elder Scrolls Online and hanging out at home with Richard and on Skype with Shifty. Seriously, I've hardly been out of the house in the past month. I miss the friends that I haven't been seeing, but I haven't wanted to be social much either.

Still don't know what's going on with my heart. Apparently I didn't have enough spoons to write about my trip to Cardiology at Queen Mary's Hospital in Roehampton, but it wasn't very exciting. They did a super-amazing high-definition ultrasound of my heart and it looked entirely normal. I have an appointment at the absolute crack of dawn on 15th November at St Mary's in Paddington for more tests. Am far more anxious about the tests than about whatever is wrong with my heart.

Two weekends ago my evil sacro-illiac joint decided to play up and I had several days of intense stabbing sensations in my spine, plus the horrible numb referred pain in my left thigh and finally the proof! that all that is wrong with my left hip is that it's connected to that part of my spine. Fucking ow. I have, however, discovered the perfect way to describe my back pain. It isn't "sharp" or "dull" or any of those words that people use. It is like being stung by an insect or pricked by a needle approximately once every 3-5 seconds. And yes, it's about as distracting as this sounds, which is another reason why I haven't really been in contact.

Last weekend we went up to Wolverhampton to see a whole load of bands, which was great apart from the fact that Richard and I both came back with a stinking cold. It was weird because we don't normally catch a cold at the exact same time, so we've been able to compare the progression of it. And it turns out that my shitty immune system isn't all that bad when compared to Richard's. We're both quite unwell still, though.

I really need to write about all the bands I've seen lately because I have been to some good gigs, but that would require ability to do coherent writing, plus sufficient spoons to pull setlists off my phone and photos off my camera, which is a little more than I can manage right now.

It's currently 6th November and I wanted to do NaNoWriMo this year. I'm not well enough to be doing much with my academic work, but I could conceivably sit down and bash out another 50,000 words of fanfic. Maybe even get my epic story finished. Is it too late to start now? I guess I could catch up, maybe...?

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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.

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I feel like I've fallen into some sort of nightmare. Went to have the ECG today. It was normal apart from my pulse rate being so damned fast... but the doctor is referring me to a cardiologist anyway because I have pain in my chest whenever I get stressed or exert myself a little bit (or take my asthma reliever inhaler). She thinks I might need to have a 24 hour monitor and/or a stress test to make sure there isn't anything more serious than tachycardia.

There was nothing in the blood tests to suggest a cause. My iron (blood serum ferritin) level was 44 ng/mL on a scale where 14-150 ng/mL is considered normal for females. I am not an expert, but apparently this means I'm not anaemic. I do remember friends with anaemia having ferritin levels in the 17-19 ng/mL range.

Also my TSH level was 1.93 uIU/mL - which is increased from May but still within the "normal" range. I am definitely not hyperthyroid because of too much thyroxine, since that would give me a TSH level of 0.3 or less!

I forgot whether they checked my vitamin D level, but I've stopped taking the supplements for now just in case they were causing palpitations... it's been more than a week without them, and my heart seems to be getting worse. Eeep.

Being neither anaemic nor hyperthyroid, there is no convenient explanation for the tachycardia. I am resolutely not Googling causes of tachycardia because I'm worried enough already. There's something about chest pain and knowing it's your heart which is just terrifying.

I just don't understand how a part of my body which has never caused me any trouble before could suddenly start scaring me like this. Especially since it's not as if the rest of me is healthy...

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I have been obnoxiously ill lately - even since before I left Canada. What doctors refer to as "Tired All The Time" (TATT), in a lot of pain with my joints, plus a high pulse rate for no particular reason. Yesterday my chest started hurting - not enough to take myself straight down to A&E, but enough that I thought I should go to see the doctor today. So I did, and discovered that my pulse was 111 bpm at rest. Which is worrying. However, since my blood pressure was 126/86 sitting down and 125/85 standing up, not "You might drop dead any minute" level of worrying.

Apparently the combination of TATT and tachycardia with normal blood pressure suggests that I might be anaemic. So I then had to take myself to the hospital for approximately 12 different blood tests, including full blood count and calcium levels, and also TSH just in case I am taking too much thyroxine. Next week I have to have an ECG, although the doctor listened to my heart with a stethoscope today and it didn't seem to be doing anything erratic.

I'm just sick of being sick, if you know what I mean. I kinda hope this turns out to be simple anaemia with no complicating factors. Although it occurs to me that my digestive system hasn't worked properly in years, and the chronic fatigue clinic did tell me that some large percentage of their patients turn out to be coeliac... I guess if the blood tests do show anaemia then I have an appointment with an intestinal camera in my near future.

And then on top of this I have the joys of my Evil Left Hip and Evil Sacro-Illiac Joint and Evil Uterus and every other part of me that doesn't work properly... Nothing I have is very serious by itself, but the combination of having to deal with a whole load of health problems all at once is, well, exhausting. Even without the exhaustion.

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I bet you can't guess which band I went to see tonight!
Me, 2015-09-21

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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.

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I am in Toronto with @Wicked_Shifty! Sorry for the lack of updates... the wifi in our hotel room is beyond terrible, so we've come down to the lobby to post sickening adorable pictures.

Me & Shifty 2015-08-29

Me & Shifty 2015-08-29

Shifty says, "Without internet, we have had to find other ways to amuse ourselves. Surprisingly, the TV hasn't been turned on yet." :D

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Current Location: Novotel North York, Toronto, Ontario, Canada.
Current Mood: jubilant jubilant

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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.

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Today I received a letter (re-)awarding me Disability Living Allowance until September 2018, or until they decide it's time to make me apply for Personal Independence Payment instead. It is at Higher Rate for Mobility and Middle Rate for Care, which is the Right Decision.

Apparently it was worth spending six days filling in the form.

I'm extra pleased since I only received the "we have got your form and are processing it" letter on Saturday, so I had been anticipating many weeks of waiting. As it is, this is all sorted out for a couple of years and I don't need to worry about it.

The next thing I need to worry about is that I've been called for Jury Service. Which is everyone's civic duty, and ordinarily I would be entirely in favour of going to sit in a court as a visibly Disabled Person. However, various parts of my health, most notably the arthritis in my spine and associated neurological pain, have been so terrible lately that I don't honestly think I am capable of sitting still for hours on end. Also, my chronic fatigue means that I am not always able to take in information presented orally and I rely on adaptations like a voice recorder and laptop for taking notes at uni, neither of which I believe would be allowed by the court. So I have to write and tell them that. URGH MORE BUREAUCRACY.

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