baratron: (voted)
Am back from telling. Dogs at the Polling Station update: 5 during the hours of 1pm - 3pm.

Yay: I got licked by a very fluffy husky.
Boo: His owner was a very obnoxious Tory.

Here is an interesting video from BBC News: How do you vote when you're blind?

In other news, London's newspaper, the Evening Standard officially Went Too Far last night. It is now edited by George Osborne, who is famous primarily for being Chancellor of the Exchequer (a.k.a. Finance Minister) for David Cameron's government. Obviously, you would expect a bit of Tory bias in his newspaper.

Well, yesterday it was announced that Diane Abbott, the Shadow Home Secretary, is unwell. Shadow Ministers are from the main Opposition party (currently, the Labour Party) and literally "shadow" the jobs of Government ministers. Conservatives have argued that she isn't really unwell at all, this is an excuse to get her out of the limelight because of mistakes she has been making during the Election campaign. Personally, given my chronic illnesses, it seems entirely obvious to me that a person who has previously been very competent and suddenly starts making mistakes could be ill. But hey, I'm biased in a different direction.

The Home Secretary is responsible for immigration, policing, and national security. Theresa May was previously Home Secretary, and during her incumbency the UK Home Office asked LGBT asylum seekers utterly atrocious personal questions, held traumatised people in detention, generally treated them like crap on a stick, and sent legitimate asylum seekers back to their original countries to get tortured and/or killed. The Home Secretary is also responsible for the UK's efforts to Fight the War Against Some Terrorists. It's basically the third most important job in the British Government.

The Evening Standard responded to the news of Diane Abbott's illness by commissioning this absolutely appalling cartoon. It's rude, obnoxious, and dismissive of pretty much everyone with a long-term serious health condition. The rather wonderful Jack Monroe has pointed out everything that Diane Abbott has achieved in her career. It's long, and impressive. Plenty of other politicians never accomplish this much. So why does she get so much abuse? Could it be because she dares to be middle-aged, female, black, and fat?
baratron: (voted)
Today is the British General Election, and I am scared shitless.

On a local level, there is a strong chance that I will once again have the overprivileged twit who didn't know what BSL meant (when given the context of "BSL interpreters for disabled people") as my Member of Parliament. I am absolutely horrified that the local Conservative party chose Zac Goldsmith as their candidate for MP, after he resigned from the party and triggered an entirely unnecessary by-election only a few months ago. He claimed it was about blocking the expansion of Heathrow Airport. Well, guess what? The Conservative Government decided to back the expansion of Heathrow Airport! So how can he stand as a Conservative again? Okay, he never ruled out rejoining the Conservatives 'in the future', but five months later is hardly the sort of 'future' that people were expecting when they asked him.

Basically, the man is a self-serving slimeball*. He believes that the reason he lost the by-election in December was because standing as an Independent, he wasn't allowed access to the Conservative Party database of supporters, and Conservative ministers weren't allowed to help him. (Although some non-minister Conservative MPs helped him, including pro-Heathrow expansion friends.) 1871 votes isn't a big margin, and while people might be willing to vote Lib Dem as a protest against Brexit, people who are scared of Jeremy Corbyn as Prime Minister aren't going to risk losing a Conservative seat. Urgh.

*[Since we need some humour to break up the unrelenting grimness, I saw this article in one of the local rags the other day: A huge snake paid an uninvited visit to a home in Kew and immediately texted Richard to ask "Was it Zac Goldsmith?". He replied, "It's a popular misconception that snakes are slimy. Actually, only Tories are slimy." My dear friend Stellarwind pointed out "There's a very distinctive difference. One is a predatory cold-blooded reptile that makes some people very nervous... the other is a snake."]

On a national level, the fact is that the Conservatives hate disabled people. I could link to literally hundreds of articles to prove this, but here's one about mental health, and one about physical disability. That second link should be read by EVERYONE I know except for those who are expecting a PIP assessment soon and can't afford to get triggered.

There's also the absolute mess that Brexit is going to make of our country. I have no training in economics and cannot really argue this point, but I do know that the pound was worth US $1.6 only about a year ago. Now it's more like 1.1. And that isn't because the dollar got a lot stronger, it's because the British economy is collapsing.

I was arguing with an idiot this morning who claimed that "u can look at it as people more incentivised to buy local and your economy will benefit". I replied "'Buy local' means giving up every foodstuff which can't grow in your climate. Goodbye, oranges!". The exchange rate matters A LOT for trade. Even on the most basic level of an individual wanting to shop, it matters. I want a $20 nerdy t-shirt from the US? It used to cost me £12.50. Now it costs me £18.18. (The idiot claimed I should "buy a nerdy UK shirt. this is how you rek your own economy gettin evrythin foreign", and I tried to point out that the specific design I want to purchase is sold by an American company, and then I gave up trying to argue.)

The Conservative government is violently pro hard-Brexit (i.e. a complete split from the EU, removing the right to free movement, withdrawing from the European Court of Human Rights, withdrawing from the European Medicines Agency, etc). I'm a scientist and I'm worried sick about the effect of Brexit on science. I'm also a person with Northern Irish ancestry, and I'm worried sick about the effect of Brexit on the Irish border. These things matter, and it's like a load of little Englander UKIP-voting Brexiteers haven't even thought about them.

And I just can't cope. My mental health has been collapsing ever since this election was called, along with many of my friends'. Richard is kicking himself for not taking up Belgian citizenship when he was still entitled to it. I'm going to be out today working for the Liberal Democrats, trying to make sure that we keep our Sarah and don't let that awful Zac back, but a General Election really isn't the same as a local by-election. And I've been too ill and stressed lately to do more than cheer Richard on as he's delivered leaflets. If we lose by a narrow margin, it's going to feel very personal.

[Leaving this public for now. If any anonymous trolls decide to have a go at me, then I'll close it down. Not in the mood to argue.]
baratron: (endurance)
Last night I spent about 3 hours filling in my Disabled Students' Allowance forms and wanted to die. There is nothing quite like detailing EVERY WAY in which you are medically broken to make you feel like a non-person.

I had to fill in three years' worth of forms in one go, because I need some funding for 2015/16 to cover 4 x sessions I had with my disability support mentor before deciding to go on a break in studies, as well as the current year (2016/17) and next year (2017/18), which made the whole experience extra tedious. Although virtually all the questions were the same, so I could copy and paste stuff.

The worst thing was that my name - "Helen-Louise" was too long to fit in the boxes of the older forms because apparently a first name should only have 10 characters in it?! I mean, what?

In other news I am slowly continuing to move people over from their old livejournal usernames to their new Dreamwidth usernames for access and subscription purposes. If you think you should be on my access list and are not currently (can you see this post?) feel free to leave me a comment here.
baratron: (goggles)
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.
baratron: (boots)
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.
baratron: (cn tower)
Today has been an exercise in frustration. Booking accommodation while disabled is... difficult. I have to make sure that I can get in and out of the bathroom by myself without immediately forcing my new boyfriend into "carer" mode when he's never even met me in person.

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

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

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

Grargh.

In other news, I have discovered that Electric Wheelchair Hockey is a thing. That's positively amazing - I hadn't known there were any sports accessible to users of electric wheelchairs before. Wow :)
baratron: (endurance)
So... I have received a hospital appointment letter for a course of physiotherapy, the first session of which clashes with the Graduate Symposium where I am supposed to be presenting a poster.

It is 4 consecutive weeks and you have to go to all 4. It runs from Thursday 18th June until Thursday 9th July, meaning that if I call back and say "I can't go", the next session is unlikely to be until Thursday 16th July. And that's if the physiotherapist isn't on holiday.

It wouldn't be so bad if it was in the morning, but it's 3.15-4.15pm. Ordinarily, this would be great - I'm always complaining about appointments from the Pain Clinic in the morning considering how brain-dead most people with chronic pain are at stupid o'clock. However, while I don't have the timetable for the Graduate Symposium yet, every year I've been aware of, the poster session has been on Thursday afternoon.

The timetable has not yet been printed or distributed. I pretty much have to be at the poster presentation (rather than just sticking my poster up and running away) since answering questions about one's poster is part of the assessment process. Even though I am never going to win any prizes because I'm a chemist in a biology department, and the likelihood is that I won't even be able to answer half the questions I get asked!

I have, for now, emailed my supervisor.

I assume the next step is emailing the conference organiser to check when the poster session will actually be, and calling the hospital to find out if they have any other times sooner than 16th July.

What other bright ideas can you think of? Sympathy also welcomed.
baratron: (goggles)
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.
baratron: (corrosive)
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.
baratron: (london)
...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.
baratron: (boots)
Sooo... I'm currently sitting in the hotel room with a wheelchair with a flat tyre. For me personally, this is among the most frustrating things I can think of that could happen while travelling. Any kind of wheelchair breakage renders me basically stuck in the hotel. I suppose I could limp down to Reception and get a taxi somewhere, but that's money I don't have and a serious amount of limping. Normally, I'm just using the wheelchair because I get exhausted when walking long distances. Today, my left knee has decided to act up and it's a struggle just to get from the bed to the bathroom. Argh!

But this hotel is amazing. One of the things about staying in a fancy hotel is that they bend over backwards to help. Reception sent up a Maintenance guy who listened to Richard and came back with the tools he needed to get the wheel apart. Except we still don't have a bicycle pump.

Sigh.
baratron: (dino)
Feeling pretty blah due to colossal amounts of back pain.

The actual issue with my back is that I have a bunch of vertebrae near the bottom that don't move properly because of arthritis. My spine's been dodgy since I was a teenager because I have a minor scoliosis near the top of it - nothing terribly serious, but it's affected how the vertebrae can move and I'm a lazy git who doesn't bother to do her physiotherapy exercises unless she's in screaming agony. The scoliosis bugs me mostly because without it, I'd be 2-3 inches taller, which is a lot at my height - it makes the difference between being "bloody short" and just "short" :)

The part of the spine at the bottom, the sacrum, is fused together by design, but there should still be movement between it and the various other bones there - hip joints and so on. Mine's been inflamed and not moving properly, probably for years. I had physiotherapy for a while, which was really helping, but had to stop when I developed a strange weird numb patch in my left thigh. That's been there for many months but has been vaguely under control with gabapentin.

So i went to hospital on Saturday and they injected steroids into the facet joints between the inflamed vertebrae. It's not as hardcore as "needles in the spine" make it sound, but it's scary because it has to be done under X-ray to ensure they hit the right place, and if you have a medical phobia and an anxiety disorder, you tend to catastrophise and imagine everything that could possibly go wrong. Anyway. It was fine.

Except that now I seem to have more movement, and my muscles are hurting like hell. The right side of that area is hurting, and the pain has always been on the left or in the centre before. Maybe they managed to fix the pain in the left of my back by moving it to the right side instead? Ha, no. It's far more likely that I have more movement than I've had for ages, and the muscles around my spine are complaining because they're not used to it.

But it's distracting as hell. I was trying to get on with PhD work yesterday and couldn't due to general wooziness and fatigue. Today my neck and the middle of my back hurts, and I can't get comfortable in any position at all - not even in my £800 orthopedic chair. Also, the numb patch in my thigh has returned and is really bothering me. I clearly need to start doing those exercises again, as well as getting referred back to physiotherapy.

Bah.
baratron: (goggles)
I have officially started back on my PhD. Apparently I didn't manage to tell you that I was eventually successful in getting my project changed, probably because my head was all over the place at the time. I also have a laboratory assistant who is presumably going to be paid out of Disabled Students' Allowance money, and who has been working for a couple of weeks.

Today I did about 4 hours of work. Not what you might consider "proper PhD-level research", but work with textbooks and online sources and mechanisms nonetheless. Revising things I'm supposed to know and learning new things that I haven't been taught.

I need to stop getting myself down/beating myself up because of everything that I don't have energy/spoons/tuits to do, and start celebrating everything positive that I do manage.

I need to stop comparing myself to other PhD students and postdocs who either have no health problems at all, or have everything well under control. Most human beings do not need to rest and/or sleep for literally half the day every day. It's no wonder I can't work at the same rate as other people when I need so much downtime in order to function.

What I really need is some role-models with long-term chronic illnesses which wax and wane and sometimes require them to take several months of leave of absence, but who have managed to achieve to a high level nonetheless. Anyone know where to find such a thing? I often feel as though I am THE only scientist in the world with my kind of health problems. And don't mention Stephen Hawking, he's exceptional. I have neither his brain nor his energy level.
baratron: (bi_pride)
The bits of BiCon that were Bisexual, Spending Time with Friends, and Edinburgh were all awesome. I had really good food (not least of all [livejournal.com profile] nitoda lemon cake!), lots of time with people I love and don't see enough, awesome gaming, some very useful activist discussions, and a few interesting workshops. Only a few because my chronic fatigue played up something chronic (ha ha) and I spent most of the mornings and some of the afternoons asleep. Of course, as is typical with these things, there were some people I really like who I said little more than "Hello" to, but that always happens. Next time.

The bits of BiCon that were Sharing the Venue with Other People were crap. Bad enough that the team ended up calling the police to report repeated instances of hate crime from other groups on site. That is all I am saying in public, not least of all because 95% of the stories are not mine to tell.

The weather in Edinburgh was glorious - mid 20s, quite dry, and light until almost 10pm. I have returned to London to find it over 33 degrees C (94.3 deg F). THIRTY-THREE. This may be a normal temperature for some parts of the world in summer, but it is nothing short of freakish for here. It's so hot that I can't wear the wrist supports that I'm needing right now, because they make me sweat so much that the skin under my wrists simply peels off. Ouch. And I really miss that extra hour of daylight. Ah well.
baratron: (flasks)
You know what makes me really fuckin' angry? People who boast that they don't take any medications that are made in a lab. As I said to one of these loons today, you have no idea how lucky you are to have the CHOICE not to take prescription drugs. I personally have the choice of taking prescription drugs or dying.

I was explaining to some people who don't know me well about the delights of chronotherapy, and why today I got up at 2 am and will remain up until at least 2 pm. And said people were trying to convince me that I should try drinking alcohol or smoking pot for my sleep problems. Because, yeah, that's a bloody great idea for someone on several medications which say not to mix it with alcohol, and who as a result of chronic fatigue syndrome has no tolerance for it at all (as in a few sips of something alcoholic puts me under the table and feeling awful). And who is extremely asthmatic and starts retching and puking when even vaguely near pot smoke.

Oh yeah, and apparently "weed won't cause variable effects with other medications". I'm on carbamazepine, which is a cytochrome P450 inducer, and that is affected by somewhere between half and two-thirds of all other medications, including natural remedies. The chemicals in pot, of which there are many, could make me need to increase or decrease the dosage of any or all of my meds. If I could find academic papers stating which particular biochemical pathways are affected by it, then I might consider it. But the fact it's illegal means there is insufficient information about drug interactions. The other problem with it being illegal is you can never be certain what dose you're getting. I prefer drugs where the dosage is known.

*stab stab stab*

In other news, I have a new wheelchair. It's a new-to-me wheelchair rather than new. It was made in 1998. However, it is built like a fricking TANK. It is higher off the ground than my old one, "for a more important appearance on the road"(*) and also very, very red. I'll link you to the eBay auction for now because I lack spoons to take my own photos. There's also more pictures in this brochure, although mine doesn't have the riser or tilt functions, not least of all because I don't need them.

(*) Engrish phrase from the Di Biasi tricycle catalogue, circa 5 years ago.
baratron: (endurance)
Life's been a bit difficult lately.

I have screwed up my left leg in an impressive manner. I keep stretching my legs while still mostly unconscious, and somehow OVERstretching my left leg and waking up screaming. My thigh has been numb for weeks and sometimes I have odd shooting sensations up and down my leg. The oddest thing is a kind of burning sensation, but like ice rather than fire. Fortunately, that doesn't happen very often.

Neither my GP nor physiotherapist can work out what exactly I've done. It's clearly some sort of nerve issue, and it's clearly not very serious since I have most of my sensation; but it's weird and unpleasant and I don't like it. Also, whenever my left leg is bad, I end up throwing my weight onto my right leg as I walk around the house, and then it gets damaged as well. Joy!

On Saturday, I randomly stretched my legs, managed to overstretch my left leg YET AGAIN, and this time it feels as though I've actually ripped something inside because not only is my thigh numb, it's all puffy just above my knee. It's better than it was, but still not good, and it's taking all my spoons to deal with it. ALL my spoons. My ability to injure myself in my sleep is prodigious, but I need to figure out what the hell I keep doing to injure it over and over.

Also, partly as a result of the above, my sleep patterns are fucked. Absolutely FUBAR. I seem to now be on a cycle of waking up between 7 and 10 pm, and falling asleep about 10 am. This is so very broken I can't even describe it. And the sleeping pills I've been given, which work splendidly for when I can't sleep because of stress, do nothing for when I can't sleep because I'm not tired enough because I basically didn't come installed with the software for functioning circadian rhythms. I can be ridiculously tired - falling over with physical tiredness - and my brain still isn't sleepy.

Oh yes! And another thing! I managed to lose my Disabled Railcard on Friday 10th May! It was in my pocket in UCL Library, then suddenly not in my pocket by the time I got to the bus stop 5 minutes away. And I spent 45 minutes looking and asked in all the security lodges and so on. Clearly, someone picked it up. Whether they are now going to spend 2.5 years claiming reduced-price travel to which they are not entitled is a question which has been bothering me greatly, because it has my name on it, but not a photo. I have paid the £10 administration fee and have been sent a new card, but there's no way to cancel the old card.

There are issues to do with College which I can't even be bothered to attempt to write about right now. The only reason this post exists is that I've edited my irc rants into semi-coherent English. Also there is other stuff which I am not posting in a public post. Like all of this, really, none of it is the sort of thing that people need to worry about: but it is a source of stress for me.

It's really been one damned thing after another. None of them very major in themselves, but together overwhelming my ability to cope. I want a bit of breathing space without anything else going wrong for a while :S
baratron: (Luka)
Well, that was one of the more amusing/mortifying moments of my life. So I went to the free lunch with the visiting speaker today, & that was all well & good. I had a jacket potato with baked beans, but I could also have had soup or salad. Then I tried to go to the lecture. 40 minutes of wandering later, I got confirmation from UCL Room Bookings that no, that venue really isn't wheelchair accessible.

So it looks like I went to the lunch because it was free but couldn't actually be arsed to attend the lecture afterwards. I need to find the lecturer's email address & apologise.

Also, I went back to the Graduate Office in my department at Birkbeck (= rather small College of the University of London) to complain, & they were shocked that UCL (= large & prestigious College of the U o L) had rooms which weren't accessible! Dudes... Did you think to ask?

Though I found out that the Graduate Symposium isn't in Mill Hill at all, it's in UCL. This would be good, if not for the fact it's currently booked to be in the same venue that I couldn't get into today. Laugh? It's that or cry.
baratron: (cn tower)
After having done not very much in months, we had a colossally busy weekend.

On Friday night we pretended to be young again and went to a nightclub for the first time in... I can't actually remember how long, but most likely about a decade, and possibly longer. Read more... )

We then slept all of Saturday and went out with Tim & Peter in the evening to celebrate Tim's birthday. I believe he was 25* this year. I suppose by the same logic I will also be 25 in June and can simply carry on clubbing like I used to, if I can find the energy. What I really need is to be able to persuade/pay one or more of my friends who like vaguely similar music as me to come and do the bouncer-ing so that Richard can enjoy himself without having to Be My Carer, since he does enough of that already.

* = hexadecimal

On Sunday I mostly played Skyrim, and then on Monday we went to Poole to see Richard's dad, stepmum, sister, brother-in-law, and nephew. This necessitated far longer on trains than should reasonably be required considering the distance, but all of the Special Assistance actually happened!! I am thinking of writing to South West Trains to congratulate them, because it's the first time in bloody ages that I've booked assistance and all of it has materialised as expected. Possibly because I emphasised really hard that I was concerned about whether the lifts at Surbiton would be working, and the fact I'd be changing at Woking around 11 pm when the staff tend to change shift.

Yesterday all I did was go to the doctor to get my vitamin B12 injection. Today^ I am on a train up to Glasgow. Tomorrow we are going to see the Wildhearts supported by Eureka Machines. It's the 20th anniversary of Earth Vs the Wildhearts, if anyone else wants to feel positively antique. They're only doing four dates, none of them in London, which is why we're going to Glasgow to see them.

^ = written on the train on 2013-04-03
baratron: (boots)
I've been randomly unpleasantly ill for a couple of days. Woke up on both Tuesday and Wednesday with pins-and-needles in both arms and my hands curled up into claws. Then it took several hours for my hands to be usable, and they were still numb/pins-and-needle-y for the rest of the day. Ugh. This is a thing that happens to me occasionally, I still don't know what the trigger is (if it was RSI from too much Oblivion, wouldn't it have started while I was still playing the game rather than the next morning?), but it's annoying.

Today I woke up with more energy than I've had in weeks, and:
* emailed College about a break in studies for illness reasons.
* booked tickets to see Jettblack on Saturday 27th April.
* phoned the venue in Glasgow about the Wildhearts on Thursday 4th April to check that the disabled access was sorted. (Apparently it is, they just didn't tell me about it).
* scanned in a lease for my mother, which was a task and a half because the scanner did things like forgetting to crop the images to A4 size (my fault for not choosing the right settings), and forgetting how to save as a PDF (definitely a software failure, since it saved fine as .png).
* talked to my mobile phone company about getting a cheaper contract (apparently possible at the end of this month when I'm eligible for an upgrade).
* put some laundry on.

I still have to write a letter for my doctor to get the supporting evidence for the break in studies, FINALLY sort out the paperwork for the Freedom Pass, wash my hair, and do some writing. I'm not sure that the writing will happen. I'm only half-sure that the hair-washing will happen, but it's reached the point of being absolutely foul and pestilent, and ready to walk off my head. I haven't done the Wednesday book meme, but then I haven't actually read any books this week, only newspapers and fanfic.

Also, tomorrow I need to phone East Coast about the fact they seem to have booked assisted travel three times for the outward journey to Glasgow and not at all for the return. I really would like to add up how much of my precious time and energy is spent on disability things - not activism, just basic access. I fear it's rather a lot.

Haircut

Jan. 8th, 2013 08:04 pm
baratron: (willpower)
In other news, I got my hair cut today. Had something like 20 cm cut off it, possibly more, so it's gone from bloody long (i.e. waist length) to just long (armpit length). So much hair. Growing hair and finger/toenails is the thing I do best. I'm sure I'd be better at repairing myself if it wasn't that all the protein I eat seems to be diverted into growing hair and nails.

I'm now feeling very, very disabled. My mum had to come round and do my hair because I can't go to the hairdresser, and hairdressers can't cope with me. I can't sit still for more than a couple of minutes at a time because of pain, and having to sit with my head perfectly level makes my back hurt even if it wasn't before. I move and twitch involuntarily. It hurts like hell to get my hair washed in a basin. I freak out from having my hair touched, especially by someone I don't know, even more so behind my back. I dislike having my back touched, when the person cutting your hair goes to brush off loose bits. The majority of ordinary haircare products make me wheeze unbearably, and I'm even allergic by skin contact or by inhalation to some of the hippy nonsense ones with all the ingredients clearly listed on the back. A hairdressing salon, especially one that does nails as well, is a mess of allergens that makes my eyes puff up and lungs give up within minutes.

Feeling really fucking abnormal right now, and need a cuddle or ten.

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