helen-louise's journal

We went to see Detective Pikachu last night. I wrote about it on Tumblr, which seems to be the appropriate place for fandom stuff.

It's set in Ryme City, and was filmed in London. You can SEE London under the CGI and it's amazing. But there is also a very important Content Warning for the plot, which can also be read on Dreamwidth.

Frustrating as all hell, because the movie otherwise does diversity very well.

Had my appointment with the Pain Management consultant at Parkside Hospital in Wimbledon on Friday. This is a posh private hospital, yet I got an NHS-funded appointment there. I am not complaining.

As you may remember, I have arthritis in my spine which causes all sorts of weird and "interesting" neurological effects. The actual patch of inflammation is tiny, and yet it presses on a nerve severely enough that I have a permanent numb "dead" spot in my left leg, plus additional events of screaming agony.

So every year or so, I get injections into my spine of a long-acting steroid and painkiller combination. They are called facet joint injections and I've had them done 3 times before. It counts as minor surgery because it has to be done under X-ray, since it would be Very Bad if the needle gets in the wrong place. But once I've recovered from the bruising, I have a lot less pain and a bit more mobility.

The first and third times, it was done by the consultant that I have my face-to-face appointments with and it helped for about 6 months. The second time I had it done, it was a different doctor who was in a hurry and didn't listen when I told her that my Large Arse requires two shots of the anaesthetic in order for the needle to get deep enough. So it only helped for about 3 months.

I am so glad my GP found out I could see the same specialist at a different hospital. Kingston Hospital has good medical staff but appalling organisation and/or administrative staff (not sure which), and the wait times there are horrendous. I am in no doubt that if I'd gone to Kingston, it would have been 6 months or more just for the first appointment, and then a further 4 months before the treatment. This other hospital is a train + bus ride away rather than a short walk, but I only had to wait 6 weeks to see the doctor, and then another 6 weeks for the treatment. It's scheduled for 1st December.

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.]

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.

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 :)

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.

...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.

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.

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 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.

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