helen-louise's journal

My health has been slowly breaking down over the past few months, and I don't just mean my mental health.

Just before the coronavirus really kicked in, I went to the US to attend PAX East and visit Grant. The convention itself was great, met several important friends, and hung out with some of the Elder Scrolls Online devs. Again. Given that I work for UESP they already have a pretty good idea who we are.



( Cut for more pictures. )

One of the important friends (Tatanko) drove Grant and I 8 hours across country to State College, PA, where he lives, from whence we hired a car and drove another 2 hours to Grant's grandmother's funeral. Which was fine. His dad was really pleased to see me/us. His mum and brother were a bit more surprised, but I think ultimately glad we made the effort, and I don't really care about anyone else.

Then I got home and had to go straight into isolation, because although I didn't get a letter telling me I had to, I take one of the inhalers on Asthma UK's list of "medications which imply your asthma is bad enough that you should be shielding". So over the past however many weeks since I got home, I have been out of the house 4 times - and 2 of those were for doctor's appointments. I am very lucky to have a Richard because I would have literally starved by now without his loving cooking.

Also... well, this story is long, and needs some privacy.

My life has been non-stop the past week.

I had to appeal my PIP, complete a PhD project plan for university and get it checked by my supervisor, and fit about two months' worth of socialising into a single weekend. On Friday and Saturday, Grant and I went up to Leeds to see PokeCharms people, play video games, and go to the Royal Armouries. It rained. A lot. We got upgraded from standard to first class on the train to Leeds because of a lack of wheelchair space (OVER AN HOUR's phone calls between me and LNER, who have been sucking particularly hard when it comes to actually following through with assisted travel bookings lately), and I really do need to make sure we always go in first class because it's the only way that Grant has enough room. He isn't just fat, he is WIDE - his actual skeleton is wide, and while he could reduce his tummy size, I don't think that trying to lose weight off his shoulders is at all practical.

On Sunday we saw Tim and Peter like usual, except "usual" hasn't been very frequent lately due to various people's illness and/or busyness. I feel very short of money after two visits to Pizza Express in two days, one of them WITHOUT COUPONS (the horror!).

Yesterday was a day and a half. Trains were non-existent for a couple of hours due to emergency services attending "an incident" between Clapham Junction and Surbiton, which basically stops the entire SWT network from happening. So we got considerably delayed. I realised I was out of the one medication I can't miss a dose of or my head will explode (venlafaxine) and had to call the pharmacy several times, each time getting their rather new and completely useless counter girl who wouldn't/couldn't put me through to a pharmacist because they were busy. Once trains existed again, waiting for a ramp at London Waterloo I managed to drop my phone and by some quirk of physics it bounced off the train floor and into the gap under the train. I did eventually get it back but that delayed us further.

We met stellarwind.livejournal.com in Russell Square and got to the museum to find it was closing early and we had 20 minutes to look at things. It's actually a tiny museum and you can get a good idea of "pickled things in jars" and "bones" in 20 minutes, but we'd expected to have at least 2 hours to look at everything properly. The early closing gave me more time to call the pharmacy. Two more times.

We had dinner at the very lovely little Vietnamese place Pho Hot (great for vegans and omnivores alike - I recommend their vegan pho or garlic tofu on rice, Richard recommends their garlic pork) and dessert at Cookies and Scream. This all went very well. After dinner we arrived at The Garage 15 minutes before doors opened for the annual Ginger Wildheart Birthday Bash only to be told there was a last-minute delay, so we had to wait in the cold for 45 minutes. We did, however, acquire a reasonable place to sit, which is good when you have a wheelchair user plus two people with sensory issues who might get dizzy and/or overwhelmed at any moment. The gig was great. However, I'm not exactly certain about buses in Highbury and Islington because when I'm with Richard we just walk to Caledonian Road (the nearest accessible Tube station), so we managed to miss our stop quite badly. This meant we then missed the direct train home and had to take a train plus bus combo with more waiting in the cold.

It was good to spend time with my Israeli friend who I've known for 15 years and talk to every day, but had never met in person before Friday - but OMG so much stress. I don't even understand how that could all happen in the same day.

Tonight, Richard and I are going to see Cheap Trick and Def Leppard while Grant sits at home playing Elder Scrolls Online (he didn't want to pay £55 for a ticket, which is entirely reasonable - at least Richard and I both get in for that price because he's my free carer). And then tomorrow I get to go and have some blood tests and SLEEP. Oh, and write Christmas cards.

I have been completely useless about asking whether anyone wants a Christmas card this year due to aforementioned busyness, so I am going to go with my usual list. If you have a new address or suddenly don't want a card, please tell me in the screened comment section below (comments which don't have private address information will be unscreened). Also if you aren't on my usual list but want to be added, let me know and I'll see what we can do.

It's Richard's birthday on Friday. We aren't having a party due to a general lack of spoons. However, if you want to have a drink with Richard, and like hard rock/heavy metal, you could come to see his band Amps at Eleven!

They will be playing on Wednesday 7th November at The Cavern in Raynes Park. It's 5 minutes walk from Raynes Park rail station which has direct trains to Wimbledon, Clapham Junction and Waterloo. They will likely play for an hour from 9-10pm and then again from 10.15-11.30pm.

They will also be playing on Saturday 30th November at The Nightingale in Sutton. According to the pub's website (so I don't know how true it is) it is 5 minutes walk from Sutton station, which is served by Southern to West Croydon, Streatham Common, Clapham Junction, London Victoria, and Thameslink to Wimbledon, Streatham, London Blackfriars, London St Pancras and north to Luton.

(They also have a gig in January somewhere in Addlestone, but Richard doesn't have the details yet and I doubt Addlestone is terribly easy for any of you to get to.)

I am home after the journey from hell. Summary: There was an ice storm in northwest New York state and southern Ontario which caused a whole load of flights to/from Toronto Pearson airport to be horribly delayed or cancelled. Mine was delayed for 26 hours.

It was rather awful because we got no food and drink provided by the airline until around 5 am, when we were supposed to have taken off at 9.55pm the previous day and been fed and watered within an hour of that time. There was some food and drink for sale at the airport, as well as a water fountain, which we could use while stuck at the gate - but no cups were provided for free, so people not in the habit of going through security with an empty bottle to fill once they're through were dehydrated. Also our checked luggage, having been screened, were not given back to us once it was decided that the plane would be cancelled. So we all had to spend the day with nothing but whatever we had in our hand luggage - which was a particular problem for me since it meant I did not have my wheelchair charger.

Unsurprisingly, between stress, spending all that time in an airport or aeroplane with thousands of other people, and sitting upright for far more hours than my spine will allow, I am now rather ill. All I can say is that if this had to happen to me, I'm glad it was when I was 41, with a credit card, travel insurance, and a well-treated anxiety disorder - rather than when I was 21. Tomorrow's job is to claim on said travel insurance. I have the letter from the airline stating the delay, both of my boarding passes, and receipts for my food, hotel, and taxi. (I'm not sure if I have the receipt for the emergency phone charger which I had to buy at the airport, nor if that's a thing I can even claim for, but I'm going to try.)

I would like to write a timeline of events, but that involves more spoons than I currently have available. So just "enjoy" my Skype and/or text messages. ( Long. )

I have been exhausted lately between CFS and SAD, and my brain has been like that thing you drain rice in. This information is probably far too late to be of any use to most of you, but just in case:

Richard's band, Amps at Eleven, is playing at:

Wed 8 Nov: The Cavern Free House, Raynes Park. 9pm start. Venue is very close to Raynes Park railway station. No food on sale except for crisps and nuts.

Sat 18 Nov: The Grove, Battersea. Walking distance from Battersea Park or Queenstown Road railway stations, a short bus ride from Clapham Junction station. This pub is great - it has all sorts of nerdy paraphenalia stuck to the walls and ceiling. It also does good food including lots of veggie options until 9pm. Richard did not inform me of the gig time, but if you go you'll want to get there in time for food anyway.

I haven't been posting more than comments because it's been too hot to switch my computer on. My laptop is "built for extreme gaming" and therefore has two heavy-duty fans, one for the CPU and the other for the GPU. Unsurprisingly, it belches out A LOT of heat. Given that it's been over 30 degrees C during the day and even over 25 at night, I haven't had much desire to add to the house temperature. I've been playing Dragon Quest VII on my 3DS instead of Elder Scrolls Online on my computer, and just checking in with my Guild for 30-60 minutes at 3 am when it's as cool as it's going to get.

Tomorrow is my birthday. I shall be 41, which is quite shocking. I don't FEEL like I should be middle-aged yet - even if extended life expectancy means we now have "early" middle-age from 40 to 55 and "late" middle-age from 56 to 70 or 75, and you don't become "elderly" until you're properly decrepit. One of my birthday presents will be a visiting Grant, which means I am now attempting to do battle with entropy such that there will be enough space in the house for him to stay.

( To do... )

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

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

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

Most of the good things that have happened this year have involved music, travel, or my partners. Sometimes at the same time. I haven't been well enough to travel much, but Grant came here in February, all 3 of us went to Boston in May to see Freezepop, Richard & I went to the Download Festival in June (and got thoroughly rained on), and I went to see Grant at his new home in Rochester, NY in September. We also saw ext_890197 and veryfineredwine, for the first time since I went to Boston to pick up wedding rings. I haven't written anything in livejournal about visiting Grant because it was quite honestly the only week in the past six months that I was not completely exhausted and ill. (Also, it was a 12-day trip including travel, so that gives you some idea of the health).

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

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

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

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

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.

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


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

( We found the Poly lift! )

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! )