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.



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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.

When I am in Rochester with Grant, we go to Community Christian Church which is, in my words, a "hippy church". The first thing you see when you enter the building is a sign saying "Refugees Welcome", and they actually mean it. The minister is a gay man married to his husband, some of the lay people who help with the services are visibly queer, and it's genuinely welcoming. Even though I'm not a Christian, I still feel more at home there than in the UU church we went to once, where people came up to us afterwards and enquired as to whether the service was the strangest thing we'd ever been to. The idea that we might be Unitarians already didn't seem to occur to anyone. (There is a second UU church in Rochester, and I might try it sometime, but I don't feel any particular need to.)

Some people from the church work for a charity which helps children who may have been abused (TW: site talks about child abuse). When they come for assessment, they can choose a plush friend to help them through the process. Apparently they get through 4 to 6 plushies per day, which is a lot of new referrals. One of these people, Bob, died recently and in his honour, the church decided to collect Bears for Bivona because it was alliterative.

When we arrived and saw a giant box of bears (and other soft toys), I decided to go through the box and hug them all. So I did so after the service. When people asked what I was doing, I explained that you can't just buy a teddy bear from a shop, stick it in a collection box, and expect it to be able to help a hurt child. You have to give it some love first. And Rev Steven considered this and decided to put the teddy bears out in church the following week.


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So the bears sat through the church service and were filled with the love of the congregation. They were pointed out during the "share with children" part of the service and each child went to hug one of them. Then the bears were blessed so that they could bring joy to their new owners. If you get the impression that this is not exactly a standard, mainstream sort of church - you'd be right!

Also the sermon featured Banksy art. (Did you realise that Steve Jobs was the son of a Syrian migrant?)

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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.

I am visiting Grant in the US!

My flight on Tuesday was one of the least unpleasant transatlantic flights I've ever taken. No turbulence at all until the final descent, enough spare seats that I didn't have someone immediately next to me, they fed me twice with food which was labelled as allergen-free, my own wheelchair got delivered directly to the plane (!) only a little more broken than it was before and easily fixable. I should probably emphasise the last point because it's really unusual for an electric wheelchair to make it directly to the gate. More usually they bring me a manual chair and a minion to push, and then I pick up my wheelchair either at the top of the ramp or down where you pick up cases.

We went for a meal at the wonderful Veggie Planet in Mississauga, about 10 minutes away from Toronto Airport. This place almost literally saved my life when my flight was delayed for 26 hours in April. I mean, I have enough body fat that I wouldn't have actually dropped dead of malnutrition, but you do not want to know how grumpy I get when I have low blood sugar - let alone when I've slept for an insufficient amount of time in my clothes in an overpriced hotel room.

Clearing both Canadian and American customs was super easy and friendly. The Canadians were just like "What are you doing in Canada?", I said, "Going to have lunch and then going to the US", and they waved me straight through. American customs are often highly suspicious when someone on an overseas passport crosses the land border, because they think I might have been living in the US and I've just crossed the border to "reset" the 6 months that a tourist is allowed to stay without a visa, but we've done it enough times now to know the "correct" answers. Plus I can prove exactly where I've been thanks to location stamps on my photos and Google Maps timeline. Rather than me moving to the US, what we really need is some way to move Grant to the UK, but that's... complicated.

So it was all good, but travelling for this distance with chronic fatigue syndrome and having been unwell immediately before (I really thought I was going down with a cold, but it evaporated), and having had no sleep for 30 hours is going to knock me out for several days. (To be fair, I did fall asleep on the plane 5 times, each time for less than a minute.) Yesterday was a fun day of... sleep. Today I woke up at noon and am currently contemplating some form of breakfast.

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. )

You are probably wondering why I haven't written anything on Dreamwidth for a while, and the answer is that I have either been too busy or stressed to write anything, or too busy recovering from being busy/stressed. I had a particularly unpleasant run-in with some friends a couple of weeks ago which necessitated the writing of a very detailed email, which used up about a month's worth of Coherent Writing Spoons.

This week has been particularly stressful because I am getting ready to go and visit my Grant. Monday involved a massive list of chores:( Read more... )

On Tuesday, I collapsed in a heap.

Yesterday, I had some social media work to do for UESP. 15 minutes before the new Elder Scrolls Online expansion was due to be announced live on Twitch, I heard a strange sound and discovered we had, quite literally, piss water pouring through our kitchen ceiling. This isn't the first time we've had a bathroom leak which became a kitchen ceiling leak, but it is the first time that it's been grey water rather than clean. A minor domestic might have ensued, due to my despair that our plumbing had been fucked for 10 days and Richard hadn't made it a priority because of work, combined with Richard's belief that I use too much toilet roll. (TMI, I'm sure, but I can't just shake myself dry! I'm not sure anyone with my type of anatomy can!)

We finally figured out that I could call Thames Water's 24-hour emergency line and sit through all the being on hold, and then pass the phone to Richard to speak to the actual Thames Water person using proper engineering language. Also we set up the camping toilet. I was not coping and had a raging headache just above my left eye. It didn't help that we were OUT OF CAKE and Richard had managed to leave the cake that he'd bought me in Wagamama when I phoned to say that the drains had become critical.

A friend asked just why our house drains are so evil. They're about 30-40 years old, ceramic, and they've started to crack in the soil. As a result, soiled water leaks into the ground, making our weeds in the back garden grow like crazy. Meanwhile, any solid effluent gets stuck in the pipes without any liquid to push it along.

We had the drain under our house, which is our responsibility, relined in October for the grand total of £100 because our insurance company paid the rest. However, the drain outside our house, which is Thames Water's responsibility, has never been repaired. They only ever come along and hose it out when there's a problem. From experience, about 75% of the workmen at Thames Water's contractor Lanes are lazy buggers who don't want to work.

Lanes called Richard today at 17:18 saying that an engineer would be dispatched and he would call when en route. Said engineer turned up at 18:20 or so without calling while I was in an old, holey pair of pyjamas. It was too late to access the appropriate manhole, being the one at the end of our garden just outside our property border, because the MOT garage there shuts up about 6pm. He said he would check with the neighbours to see if it was possible to clear the blockage from there, and then disappeared. About 18:45 or so my mother was leaving the house and she asked where the guy from Thames Water had parked. I said "Just up the road, why?" and she said "I'm sure I just saw the van leaving". Lo and behold, I checked with our neighbour and the workman had indeed done a runner.

This is a complete and utter Lanes "special". The engineers turn up, look at the problem, fail to believe anything I say, and then bugger off without a word to me. I literally cannot BELIEVE that he didn't call my phone or knock on the door to say he was leaving. I am PISSED OFF. We have no functioning toilet other than the camping toilet, which is a bucket with a seat, and not really suitable for Number Twos.

Meanwhile, I'm supposed to go and get on a plane tomorrow morning. I have done the online check-in for my flight tomorrow, I have told 2 x banks that I am going abroad, and I've updated my travel insurance because it runs out during my trip. I have also called Lanes and had a good moan, and we have an appointment booked tomorrow between 10am and 12 noon.

I wish I felt excited about going to see Grant. He's excited because he's lonely and touch-starved, and he's going to get me for over 3 weeks. I feel guilty because I'm running off and leaving Richard with a house with a backed-up drain, a squeaky bathroom sink tap, and some sort of alarming leak in the bathroom which is soaking the tiles and running down to the kitchen ceiling. It doesn't seem fair to leave one of my primary partners dealing with a WHOLE LOAD of plumbing problems while I'm off enjoying myself with the other one. I really should be here to support Richard while he works on it - but I can't afford to reschedule my flight.

It's just frustrating and upsetting and not what you need before a holiday.

Today we are going to a museum which is, by its nature, not super accessible. (Old trains, subway cars, lots of narrow gaps which might not fit a wheelchair.) So why did I wake up screaming in pain at 5 am, and why is my RIGHT leg impaired as well as my left?

Pain Management Clinic appointment on 18th October can't come fast enough. Stupid arthritis of the spine pressing on my nerves.

Home from travelling. Actually, I got in somewhere around 1 pm yesterday and proceeded to pass out for many hours. Woke up at 1 am and (much to my surprise) have been awake ever since. Husband has been snuggled. Boyfriend has been talked to on Skype. He looks very sad, poor thing, but it remains against the laws of physics for me to be in two places at once. Hoping we can have him visit in late June/early July for my birthday.

Super weirdly, I have been physically energetic enough to have emptied the laundry rack, folded the dry laundry, sorted all of the dirty laundry in my suitcase, put on a load of laundry, emptied the clean stuff out of the dishwasher and refilled it. I hope that I will not pay for this tomorrow, though I have A Theory. A theory which involves, of all things, vegan bacon and my ability to get it.

(Gods, I knew that Yves Veggie Bacon wasn't very fatty, but I didn't realise that 3 rashers had only 0.5 g of fat between the lot of them, along with 14 g of protein. Short of actually, y'know, BAKING my own tofu, I am unsure where to get tasty textured fake meat products which are low fat and high protein. Nasty-tasting, weird textured but low fat, I can do. Nice-tasting, well-textured and full of fat, I can do).

Continue to be Unimpressed with Aer Lingus. Will relate the full story later when spoons exist.

Yesterday was a little surreal. First of all, a friend who I've known for 15+ years outed themselves as non-binary and planning to start a medical transition approximately 5 hours before we were due to meet in person. Of course, I have no problems whatsoever with a person changing their name and pronoun (as I said, sometimes I feel like the only person in the bi/poly community who isn't non-binary or genderqueer*)- but I usually expect to find out a bit sooner than the day we're meeting for the first time in seven months! It helps to practice the new name and pronoun for a bit by myself so I don't accidentally blurt out the wrong one with the person present.

As it was, I blurted out the wrong name within minutes, and didn't even mean to - I was trying to say "Grant", but my stupid noun aphasia (caused by high doses of venlafaxine, which is otherwise a really good medication for me) cut in and substituted the friend's old name. Just great. Fortunately, friend has indeed known me for 15+ years and has been aware of what my mental health is like when inadequately medicated, and could agree that annoying side-effect beats the state I used to be in.

Then the friend (who may out themselves here if they wish) and I went out for dinner with Shifty and two of his cow-orkers. They were all hideously late owing to their charity work being extremely disorganised, and I was very glad I wasn't sitting in the restaurant by myself. The cow-orkers asked how Shifty and I had met, we started talking about Elder Scrolls Online and the UESP Guild, and it turned out that one of the cow-orkers has been using the UESP wiki since Oblivion (2006). And he was basically fanboying at me for running the UESP Guild and knowing the site owner.

Meanwhile, my friend was talking about their wife and girlfriend, and I was talking about Grant and "my husband, Richard". I mentioned things like when the three of us go out for dinner, how they always pick the same thing and then one of them has to switch so they can try more dishes - that they don't just have the same taste in women. While not explicitly at any stage using words like "polyamory" or "open relationship".

The dinner was nice and it was not too stressful, but I was feeling pretty wiped out by the end. I seem to be fighting some sort of throat infection, which is attempting to ruin my holiday and can sod off any time now.

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*I am bigender rather than non-binary or genderqueer, so I am female except when I'm not. I have somewhere between a few hours and a few days of raging gender dysphoria per month where my entire body is Wrong, and the (actually bi but scared of women) gay man in the back of my head comes out. And the rest of the time it's just fine and I want to be addressed as "she/her" and recognised as A Female Geek Doing Nerdy Things. The conclusion I've come to is that my social and political gender is female, but my sexual gender is male.

Apparently there is a BiFest on Saturday 8th April, approximately 10 minutes walk from my house. This is so very close that I really have no excuse not to go. So who else will be there?

The day after, I am flying to the US to see Grant for two weeks, so it will be awesome to see all my bi and/or poly friends beforehand!