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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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Current Mood: accomplished accomplished

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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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Current Mood: okay okay

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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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Current Mood: worried worried

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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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Current Mood: tired tired

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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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Current Mood: irritated irritated

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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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Current Mood: busy busy

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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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Current Mood: content content

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I have successfully filled in my Disability Living Allowance (re-)application form. It only took me 6 days.

I have also successfully achieved a signed FP92A form, which is a Medical Exemption Form granting me free prescriptions for the next 5 years. Now I just have to wait for it to be processed.

I would be jubilant, except that I have entirely run out of spoons from all this bureaucracy.

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Current Mood: accomplished accomplished

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I just did something I promised to do last week… tidy up the massive pile of mail in the hall. Half an hour of non-stop sorting and I’ve done about a third of it.

You know your house is a mess when the junk mail piled up in the hallway contains a “Win a Trip to the London 2012 Olympic Games” flyer, and it's August 2015. I am not even joking.

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Current Mood: nauseated nauseated

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So I finally have my trip to Canada booked. I'm flying to Toronto on Friday 28th August to meet Shifty. He's American, but lives close enough to the border that Toronto is pretty much the nearest major city.

Then Richard's flying over on Thursday 3rd September and all three of us are going to hang out until Sunday 6th September. Then Shifty's going home and Richard and I are going to Montréal until Thursday 10th September, whereupon we fly home.

Any potential burglars who are reading this and think that they can break into our house while we're away, please note that it will be guarded by a vicious Attack Mother. Which is worse than a dog, because a dog will only bite you... my mother will talk you to death!

Anyway, if you are located in Toronto or Montréal and might want to meet up with us while we're over, please read below the cut-tag. DetailsCollapse )

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Current Mood: optimistic cautiously optimistic

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Presented without comment:

Oh yes. Although it's a metal song, it should be accessible to the hearing impaired because the lyrics are on the screen.

In other news, I have three workmen in my house right now restoring our gas supply via a number of ugly external pipes. The people who restored this house two owners ago did a horrible botch job involving "repairing" the downstairs wooden floor with poured concrete, and digging it up will require a pneumatic drill and all sorts of additional risk assessments. So they're piping the gas in along the wall. They arrived just after 9 am and will apparently be here "all day".

I am still sick and would really require more sleep, except that Richard has had to go into work because his colleagues are busy breaking everything. Wasn't he too stressed out by overwork only last week? Hmm.

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Current Mood: amused amused

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Today I am not at my best. Been fighting off bad asthma for a couple of days, along with a raging sore throat, and a few hours ago developed a pretty bad fever. I haven't been to sleep yet. (Mostly because I was too hot to sleep).

And then just as I was trying to get to bed, I had a loud man knock on my door and declare himself to be an Emergency Gas Engineer visiting the house because the postman and a passerby had called to report a gas leak.

It transpires that the most likely source of this leak is the pipe which brings gas into our house. That explains why people randomly think they can smell gas when they visit us, but why we've never been able to smell it inside the house. However, accessing said pipe may be problematic due to the fact that when renovating some 30 years ago, the previous owner replaced the rotten downstairs wooden floor with poured concrete. Which isn't even properly flat.

I am drenched in sweat because of being ill and I don't believe that I am likely to get any sleep anytime soon, but nor is my house likely to be exploding anytime soon since appropriate professionals are working on it. So I suppose I should count that as a plus. It's just that if I have to deal with emergencies, I'd much rather do so on days when I have ability to cope - rather than on a day when I've started with negative spoons :/

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Current Mood: sick sick

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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!


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 :)

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Current Mood: frustrated frustrated

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My Macbook Pro is officially no longer at the minimum spec for Elder Scrolls Online, so I need a new computer. Since Apple don't make laptops with sufficient graphics capabilities for gaming, I'm being forced back to a PC. I am not very happy about this and will be keeping my Mac for work purposes, most likely.

I'm looking at a couple of "extreme gaming" laptops online. (I don't know what "extreme gaming" is - I've been assuming it's like extreme ironing. In which case I don't need to worry too much because my physical limitations prevent me from climbing narrow rocks in order to play my video game at the top of them. Also, I'm pretty sure that the internet connection isn't too good up most mountains.)

Since laptops are not easily upgradable, one must start with the best possible spec now in order to make sure that the machine is still usable in 5 years time.

I've got it down to 2 possibilities. One has a better screen (GLOSSY 3840 x 2160 rather than matte 1920 x 1080), the other has twice as much video RAM (8 GB vs 4 GB). The one with the better screen and less video RAM is also lighter (2.5 kg vs 3.1 kg). My MacBook Pro is something like 2.7 kg including its fancy case, so I know I can just about lift that much.

Here's the spec:
  • 15.6" glossy 4K PLS LED widescreen (3840 x 2160) - sounds like insane resolution to me but it's the only glossy screen that was offered. I'm not going back to matte after using a MacBook Pro.

  • Intel (R) Core(TM) i7 Quad Core Mobile Processor i7-4720HQ (2.60 GHz, 3.5 GHz Turbo)

  • 16 GB Kingston SODIMM DDR3 1600MHz (2 x 8 GB)

  • NVidia (R) GeForce (R) GTX 980M - 4 GB DDR5 Video RAM - DirectX (R) 11

  • 250 GB Samsung 850 EVO SSD, Sata 6 Gb/s (upto 540 MB/sR |520 MW/sW) - deliberate choice, I can't see myself needing much storage space considering that I've only used about 240 GB of my current hard drive on a machine which has both games and work on it.

  • Genuine Windows 7 Home Premium 64bit /w SP1 - inc DVD & License (YES! Not Windows 8.1! Also a free upgrade to Windows 10 when that's released.)

  • Obviously it has a sound card and some USB ports, but I'm not hugely excited by those. They're just there.

  • Various warranties, etc.

Does that sound good? I hope it should last for the life of ESO, anyway. The price for that spec is £1216.67 ex VAT or £1460.00 inc VAT.

Have any of you ever bought machines from PCSpecialist? Richard knew of them as a place where you can get custom laptops, but neither of us knows what the build quality is like. Also whether it's possible to get an "extreme gaming" laptop with this kind of spec from anywhere else for cheaper.

I kinda wish I could get the glossy super high resolution screen and the extra video RAM on the same machine, but that doesn't seem to be an option.

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Current Mood: irritated irritated

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I have a horrible stinking cold. It's nothing exciting, just a summer cold, but I am feeling miserable owing to being feverish on a day which is hot and humid.

My mother had cancer, and as a result of the treatment, has an extremely weak immune system. I told her I was ill & she shouldn't be hanging round here.

So why did she spend over half an hour in my house when I’m shedding virus at a rate of knots and the air and everything I’ve touched is potentially contagious?

Current Mood: grumpy grumpy

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My Graduate Symposium went well. Turned out that the poster presentation was on Friday, so I could go to my hospital appointment after all.

I got there on Friday lunchtime, concerned because we were supposed to have put up the posters "at the start of the conference". Actually, when I got there, 9 out of the 32 posters were up. There were no fixed places, you could choose where to put your poster, and I put mine on a poster board that was a little out of the way, but had enough space for me to sit in my wheelchair in front of it. This turned out to be very helpful since the basement room was ridiculously hot and noisy by 2.30pm and I would have felt horribly claustrophobic anywhere else.

Not many people bothered to come over to see my poster (the pitfalls of being a chemist in a biology department) but I managed to impress everyone I spoke to.. And my thesis committee chair was very excited by the potentially NEW STUFF that I might have discovered and said I must get the work finished and written up for publication as soon as possible :)

I didn't win a prize but I didn't expect to - one prize for 32 students & it's not going to be given to one of the two chemists in a room full of biologists. Frankly, the prize was having my thesis committee chair so pleased with me and my work. I don't need a £30 book token for that.

I actually wrote a nice email to the woman who organised the conference thanking her for everything she'd done to make it accessible, with specific examples so that anyone else who does the job can see the sort of thing that is helpful.

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Current Mood: happy happy

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