vivdunstan: (oracle cards)
As usual the Urban Crow deck, and my loose 3-card past/present/future spread.

Scavenge / Freedom / Battle. Again some new to me cards this week.

This random draw does feel close to what I've been going through lately, and will be going through in the coming weeks and months. I very recently had my 10th Covid vaccine, which I expected to cause my 10th post Covid vaccine neurological auto immune illness flare. Which is really tough, and happens a week after each vaccine, and lasts for 3 long months. I'd spent the last few weeks before the vaccine trying desperately to sort things out that needed doing, including finishing (or nearly finishing) a couple of academic journal papers before I got too sick to work on them. At the same time I knew I was in as good a position as I was going to be for a long time, and wanted to grab the opportunities. Then when I had my vaccine it was a very strange feeling of limbo for the next week, feeling good - apart from flu like vaccine side effects (I had both flu and Covid vaccines together) - but knowing it was just a brief period. It almost felt psychologically like floating on air. And then this last weekend things crashed back down, with clear signs of my latest flare starting. Which is still currently relatively mild, but should get much more scary and difficult to deal with over the coming weeks.

So yes, a bit of desperate scrabbling around, and then a strange feeling of limbo, and tough times looming. I will cope though. At least I was forewarned, and have been able to prepare for it. That almost sounds like a Doctor Who quote!

vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Pleased that my temperature has stabilised finally 6 days after my latest double vaccines. It's continued swinging for ages, though I was feeling much less fragile overall by Monday afternoon. My arms are still sore, but improving a lot too. Enormously grateful to have got my protection. Even as I expect a very nasty and prolonged post Covid vaccine auto immune neurological illness flare to start shortly šŸ™ But got my protection!
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Huge thanks to the NHS Tayside staff in the Wallacetown health centre in Dundee. Double vaccinated. Expecting to get very ill from an autoimmune neurological flare starting in a week from now, and it will last 3 months. That will be the 10th time for me after a Covid vaccine ... But I want my vaccine protection too much, and am hugely grateful to have received it again. It's currently a fight between my arms re which hurts more. No fever yet.
vivdunstan: (oracle cards)
Back to the Urban Crow deck, and as usual my 3-card past/present/future spread.

Play / Anomaly / Anticipation.

There could be lots of interpretations of these cards. But looking at them I'm immediately reminded that I'm in a brief phase of slightly better health at the moment, and about to go very very downhill again in a few weeks time. So I've been having fun, and trying to make the most of it. Albeit hampered by my failed experimental immunosuppression dose change from May. Which still needs a few weeks to resolve itself since the dose went back in September (it takes up to 12 weeks to show the full effects).

Admittedly I've had post Covid vaccine flares so many times (9/9, with my 10th Covid vaccine due in a couple of weeks) that it's hardly an "anomaly" in my life! But it is still phenomenally disrupting each time, very distressing, leaving me extra incapacitated with devastating increased neurological symptoms for 3 long months at a time. It's a never-ending rollercoaster. But not one I'm willing to get off. I want my vaccine protection too much, and severely immunosuppressed me really needs it to get through Covid ok. Which we keep catching.

On plus I've got Christmas looming in the next few months, and that's what the last card today shouts out to me. I am not religious - was brought up vaguely Church of Scotland, but I've been agnostic for many years. I take after my Dad re this. However I love the mid winter festival that is Christmas, and the sense of snuggling down, in the warmth, with good food, and celebrations. So that's something to look forward to. Even if I will still be neurologically flaring very badly then.

This year we can also look forward to our annual pre-Christmas rewatch of 1984's TV Box of Delights being the new next month Blu-ray remastered version. So that will be a treat to carry us through to Christmas too.

vivdunstan: (oracle cards)
Preparation / Self-Interest / Memory.

Another three cards. Which in some ways connect with where I am now.

Autumn is my favourite time of year, and I’ve been getting things in place and making plans for the coming months. Especially the next month and a half, before my inevitable latest post Covid vaccine neurological flare. I’ve already been thinking an awful lot about this, but still need to sit down, with pen and paper, properly brainstorm, and make a list. I’m also planning very soon to blog about my plans on my academic musings blog.

Self-Interest is something I can focus on too much at times. But it’s also important, given how limited I am now, to focus on things that give me joy. Which ties in with the previous paragraph.

This year sees many big anniversaries in my life. Very big ones, like 30 years since both our graduation together and wedding. But also fandom ones, including the 40th anniversaries of Robin of Sherwood, The Box of Delights and even Murder She Wrote! I’d like to dedicate some time to looking back. Including remembering my undergraduate years. Before the end of 2024! So soon.

So more to ponder. But, yes, I need to formalise my musings re plans just that bit more. Writing a formal public blog on the subject should help encourage that.

vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
Another 3-card past/present/future spread, using the Urban Crow oracle deck. And musings on how these might relate to my current circumstances.

Warning makes me think again of the increasing signs I've had in the last few weeks that my neurological disease was going out of control. Even as I should be improving a little, as I was coming out of my latest 3-month-long post Covid vaccine neuro flare. I have now noticed these, and am alert to them. And will decide whether to re-raise my strong immunosuppression drug in 6 weeks time, if not sooner.

There isn't anything otherwise bad happening to me that can be linked to Mischief. I'm more minded by seeing it that I need to have playful fun, despite everything. So I'd like to take that as a reminder that I need to make an effort to have good mischief in my life too. And that's something I can do something about.

Gifts is a reminder of my upcoming birthday (a pack of playing cards birthday as I like to think of it!). I know that Martin has been getting some things in for me this week. He is also arranging a gigantic fudge doughnut cake again from Fisher & Donaldson, at my request. Though this year he will need to pick it up in person from the city centre shop. They no longer do local home deliveries.

vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
I'm trying to remember to make time for this each week. To randomly draw a simple past/present/future 3-card spread of the Urban Crow oracle cards which I got recently. And find very easy to work with/interpret.

As usual, I'm using them as a tool to reflect on my situation and circumstances. And think about where I am and what I want to do. I am not using them in a predictive kind of way.

Here is today's spread. With thoughts/comments after the picture.



The middle card, Freedom, was lovely to see. I am currently newly in a better patch in between my recurring rollercoaster of post Covid vaccine neurological autoimmune disease flares. I've had these flares 9 times now, after every Covid vaccine (I get, and need, a lot of Covid vaccines because I am severely immunosuppressed). Each time I am even more ill for up to 3 months, with phenomenally increased sedation, headaches, arm and leg loss of control, and increased bladder incontinence. Many people wouldn't put up with this. But I'm not willing to sacrifice my much needed Covid vaccine protection. And I know I am generating good antibodies from each one.

So I'm in a better patch, for the next couple of months. After that I will get my 10th Covid vaccine, and be iller again for another 3 months. I will just cope. Plus my neurological disease is still progressing, and leaves me severely disabled, even in the better patches. But that progression is slow. And that's partly why I'm still here 30 years into living with this illness!

So yes, this is a time of relative freedom for me, and I want to make the most of it. Maybe get more things done, including the academic journal papers and research projects I am working on sporadically. And maybe get out more with Martin, to have fun.

The left card, reflecting the past, is Anomaly, which can be a problem, or something out of the ordinary, or other interpretations. It's making me think of my latest Covid vaccine flare more than my long-term neurological disease. A devastating neurological flare which has run from early May to early August. And it does tie in with Freedom.

The rightmost card, reflecting looking ahead, is Caching. Which again fits nicely with where I am. I want, in this short better patch, to make new valuable memories, and get things done I can look back on in future. So I want to make the most of this time, in a way I can look back on happily when I'm much iller again.

An interesting draw anyway, and some nice things to think about.

Meanwhile re Freedom, today is the start of the Glasgow Worldcon, and I have digital streaming access thanks to my attending ticket. I won't be watching much live, but hope to see one talk later today. And catch up on even more in the coming weeks and months. I also have Oxonmoot to look forward to in a few weeks. Again with a digital ticket. And ditto for the Edinburgh Book Festival. Streaming has been transformational for me.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
So phenomenally sedated at the moment - this has been going on for many weeks in the latest bout, but recurring for many years, if not decades. It's like I've taken a strong tranquilliser. And as if there's a curtain shutting down in my brain. I finally struggle up for dinner, very sleepy, then back to bed after. Thank goodness I don't have much to do! I do have a game to finish off for IFComp in the next few weeks. But that is final polishing. I started coding early for very good reason ... But yup, could do without this.

And yes, we know why this happens to me, with my progressive neurological disease and also recurring post Covid vaccine neuro flares. Throwing more treatment at it doesn't seem to help. It's just where I am, and it's getting worse. But hey, lucky to be here after 30 years of this. Just don't want to sleep all the time ...

Bug fixing

Jun. 15th, 2024 09:28 pm
vivdunstan: Art work for the IF Archive including traditional text adventure tropes like a map, lamp, compass, key, rope, books a skull, and a sigh referring to grues (interactive fiction)
Struggled enormously to wake at 4.30pm - still very heavily sedated from my latest post Covid vaccine neuro flare. But currently - miraculously! - awake enough to fix a couple of key bugs in my IFComp text adventure game. I have a couple more weeks to work on it before the final round of playtesting. Still have one big structural change to make, as well as many small things (I'm about halfway through my to do list). But pleased with tonight's brief work. Which I have also tested as much as I can re the new code. Lots of running around locations in the game, trying to beat a time issue, and also observe what happens in different places and different situations.

Poster

Feb. 9th, 2024 10:03 pm
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Sticking up a new version of our "weak immune system" poster inside our front door. The original went up almost 4 years ago. But it's faded a lot, so needed replacing. And yes it's still applicable. Despite vaccines and anti virals that I can access.

vivdunstan: Arms of King James V of Scotland with a unicorn among thistles. Above the unicorn is the blue and white saltire flag, below the unicorn the red and gold lion rampant (scotland)
Reminder for fellow UK people especially, and of those Scottish based folks in particular: this year's Worldcon Science Fiction Convention is to be held in Glasgow this summer. Attending memberships can be bought for the whole thing, or will be available on a per day basis. And there is an online ticket option. Hotel rooms are being booked up now.

Martin and I were intending to go stay for the whole thing this year, but due to my progressive neurological illness and repeated 3-month long neurological flares after twice yearly Covid vaccines we can't possibly manage it now. Also the risk to immunosuppressed me from Covid infections on site is still far far too high. So we don't think we will be going in person at all.

We plan to keep our very reduced price (Scottish residents) attending memberships, in case we decide to drop in briefly (unlikely but ...). But will be mainly using online access available to us.

Anyway if this Glasgow con is something that might appeal to you check it out. The event will be full of panels, chats and author meet ups, plus a chance to mingle with fellow SFF fans. Also a very active traders' room. It will also host the Hugo Awards ceremony, though I hope this year's World Science Fiction Society (WSFS) Business Meeting looks to address some of the concerns from last year's Hugo Awards. Which seem to have been problematic, expressing it politely.
vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
We're officially a house of plague again. So far only Martin has tested positive - and so far only extremely faintly. But I woke in the afternoon with strong new Covid symptoms (not shingles vaccine ones). I'm going to keep testing, to help me decide what to do about my twice daily strong immunosuppression drug. I will probably pause it as last time, but haven't decided that quite yet - want to be sure enough before pausing vital medicine I really need to stay alive. Also will test again in case I test positive and can access anti virals. Meanwhile we're ok, especially Martin, who is currently symptom free. And food still - as I type this - tastes ok. We just enjoyed a pizza takeaway. Though that will all probably change over the coming days.

It's possible we picked up Covid at the Dundee vaccination centre early on Thursday morning, perhaps more likely than at the V&A where we were extremely spaced out from folk. Though there was one woman there we kept encountering in the exhibition who was constantly coughing … Both of us were masked up in both places, though no one else was. Alternatively Martin may have picked it up at the office or supermarket on Tuesday. Grrrr.

The fluffy toy plague doctor has a black fluffy outfit and hat, plus a white bird like face mask. It holds a vessel in its hand.

Tartan ahoy

Jan. 3rd, 2024 10:24 am
vivdunstan: Warning sign re risk of being mobbed by seagulls (dundee)
Very late getting to see this, but just booked us tickets to see the Tartan exhibition - in its final week! - at the V&A Dundee next week. We will be in the city centre that morning for my first shingles vaccine.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Just found that this year the shingles vaccination programme in the UK is being extended to include severely immunosuppressed people aged 50 or over. That’s in addition to non immunosuppressed vastly older folks. It’s a two part vaccine given over an especially short period to severely immunosuppressed. And not live, so safe for even immunosuppressed to have. So I can expect that this autumn too. Joy. Hoping I don’t get another neuro flare. Though I want the shingles protection. I’ve had shingles twice, including just before my PhD viva. And I was lucky to survive my only run in with chickenpox as a newly immunosuppressed 25 year old in 1998. I ended up in hospital on drips and in isolation for a week.
vivdunstan: Test card (television)
Over the last few weeks we have been rewatching the BBC’s 1999 TV version of Elizabeth Gaskell’s unfinished novel Wives and Daughters. Really good book, well adapted. Martin is watching it as if for the first time - he can’t remember anything of the 1999 previous watch. Michael Gambon was incredibly strong in tonight’s episode. I was also amusing myself by spotting actors who’d been in Doctor Who too.

Next up on our rewatch is probably going to be the 2005 David Tennant / RTD version of Casanova. Well I say rewatch. It will be for me. Martin hasn’t seen it! We have it in digital form from iTunes which is 2 x 90 ish minute episodes. I think I can probably manage those this weekend and next, before my 7th Covid vaccine triggers probably a terrible neurological flare, wiping me out again. I remember Murray Gold’s music being gorgeous in it. But never released separately I think. Like Doctor Who New Series 10 still - grumble grumble.
vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
Got my latest antibody test results today. Here’s a graph. It’s incomplete, and beware 2500+ is the upper range, and doesn’t go more precisely. But basically since my bonus extra 3rd primary vaccine in autumn 2021 I have been getting very good responses. And it’s lasting. I had virtually no Covid antibodies after my 2nd Covid primary vaccine but got an extra 3rd primary because I am severely immunosuppressed to try to bring me up to where other people were after two vaccines. I am very very lucky getting good responses now. Many immunosuppressed people don’t get any protection from the vaccines. But it’s helping me, even if at great personal cost. My brain autoimmune disease is very unstable, and a week after every Covid vaccine it starts flaring, with appalling neurological symptoms. And that goes on for 3 long months each time. But the vaccines could save my life, so I keep getting them. And coping with the flares. But yay antibodies! My 7th Covid vaccine will be a fortnight from today. I expect to be extremely ill from mid June through mid September. But it is worth it. And we haven’t caught Covid yet.

vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
For over 75s, care home residents and immunosuppressed people like me. That will be Covid jab number 7 for me. And a week after I will almost certainly have another 3 month long neuro illness flare start. I’ve had this happen 6 times already, 18 months of 2021 and 2022. It’s horrific. On plus because I’m severely immunosuppressed the jab could very much save my life. But it’s horrific to cope with repeated flares. At least I am only due 2 Covid vaccines in 2023.

https://www.bbc.co.uk/news/health-64876657
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
This is such a disappointing result for immunosuppressed people like me. Other countries around the world gave Evusheld to their immunosuppressed people a year or more ago, offering them vital protection at that time - which worked - against the then variants. The UK government chose not to, and delayed the decision making process so much in a rapidly changing variants situation that now the much delayed result is no. On plus there is a new version of Evusheld being developed. And on plus NICE has admitted that the current decision making process in such a time critical setting needs to be speeded up hugely. But yup, very disappointing. I am very lucky that I do have some good antibodies finally after 6 Covid vaccines, with a 7th vaccine probably due in the next few months (which will probably cause another 3 month long neuro flare, but ...). But many immunosuppressed people are not so lucky.

https://www.nice.org.uk/news/article/nice-says-no-evidence-that-covid-19-treatment-evusheld-is-effective-in-protecting-vulnerable-adults-against-current-variants-as-it-announces-new-rapid-update-process-for-covid-19-medicines
vivdunstan: Photo of some of my books (books)
Going to feel groggy later this week - I always get 48 hours of side effects after a Covid vaccine (5 times so far, with Covid vaccine 6 this week). And then a week after the Covid vaccine each time 3 months of devastating increased neurological symptoms start. So I think I’m entitled to treat myself to something I’ve fancied for ages. Getting it from Blackwells.

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vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
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