vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
Waking late afternoon as continue to recover from my latest neurological illness flare. Heavy sleeping daily with the most bonkers protracted dreams! Still waiting for urgent gynaecology referral appointment. NHS Tayside has phenomenal wait for this particular clinic (*), though guidelines say they should see you in 2 weeks ... Meanwhile sleep.

* Current advertised waiting times are 35 weeks ...
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Very sad to see the Scottish assisted dying bill voted against. Thinking of my dad tonight, and those like him, who suffered cruel and prolonged deaths from terminal disease, with totally inadequate palliative care, and would have dearly liked the option of assisted dying legislation.

And I find it really hard to read people posting about making life worth living instead. My dad died of pulmonary fibrosis, suffocating to death over two years hooked up permanently to oxygen. The last few months were agonising. People saying this haven't a clue how much some suffer. It is so cruel.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Got to the end of my 4-a-day home blood pressure readings (was filling the complete form, and just had space left to do 2 final readings this morning). My average over the week-ish is coming in at 125/80. That'll do nicely.

I have a cerebrovascular disease, so keeping my blood pressure within safe levels is important. But my readings in the health centre are not reliable due to white coat syndrome. I am happy to check at home.
vivdunstan: Photo of my 72 bass accordion (accordion)
Delighted to manage accordion practice despite neuro disease relapsing majorly. At a similar relapse in 2004 I lost strength on my right side, arms, legs and falling to the right. Essentially a stroke. And 22 years on I'm still often weaker down that side when more tired or during flares. So today it was really nice to see my right hand play accordion well even if I was very light headed!

This was also a really good test of how I'm doing before I speak to my GP soon and we decide what to do extra treatment wise, given how extremely high the inflammation in my brain blood vessels currently is. Meanwhile I enjoy playing French accordion music, including here the polka Martelette.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Doubly vaccinated, Covid and flu. Huge thanks to the NHS staff and volunteers at Douglas Community Centre in Dundee. Extremely efficient. I was by far the youngest person there 😜 My 12th Covid vaccine ...
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Just found this article about my long term consultant (1996-2015) who diagnosed my neurological disease in 1997 and basically saved my life 🙂
vivdunstan: Warning sign re risk of being mobbed by seagulls (dundee)
Got this late afternoon in Dundee city centre. I am still offered these Covid vaccines twice yearly by the NHS, being severely immunosuppressed. Very quiet vaccine centre - no one waiting when I got there early. I suspect they have a lot of no shows in the current 75+ group. I was weeks earlier for my vaccine than I might have been, keen to get it before my Capercaillie music concert in 3 weeks.

Because I was seen so early we were able to get an early takeaway dinner from a fab fish and chip shop that is sadly shutting its Dundee branch after this weekend. Sat below the uni, overlooking the River Tay to Fife. Bright evening sunshine, and surrounded by optimistic but unsuccessful seagulls. Martin also spotted wild bunnies on the grass down the steps, so dashed down to photograph them.

Planning a very quiet weekend. I expect to be feverish and very sore overnight. More seriously I will probably have a 3 month long flare in my autoimmune brain disease, starting about a week from now. It’s very difficult. But I will be protected.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Wonderful news from the rheumatologist - just found her letter waiting in the hallway. My latest bone density scan 2 weeks ago in Perth showed that I have improved, going back from full blown osteoporosis 8 years ago to osteopenia, which is like part way between normal/healthy bone density and full osteoporosis. So the strong bone regrowth drugs I've been on ever since 2017 have helped a lot! I am to keep on them though, because I continue to be on a pretty decent daily steroid dose. But that's ok. They are helping. They are a big complication for dental treatment options, because of how they can cause bone death in the jaw, limiting the types of procedures that dentists can safely do. But my dentist is working around them. And we are coping. So yay!

I've been on daily steroids permanently since 1998. Also my periods stopped completely for much of my 30s due to my toxic cocktail of other drugs. Only to resume for a short time after. So my bones have taken a pretty big hit. But reverting from full osteoporosis to osteopenia now is wonderful news.
vivdunstan: Part of own photo taken in local university botanic gardens. Tree trunks rise atmospherically, throwing shadows from the sun on the ground. (Default)
Bumped this up my viewing list, because the play is going off streaming through National Theatre at Home at the end of this month. It can be viewed before then by people like me who subscribe to the service (I was lucky to nab a reduced price offer before Christmas), or on a short-term rental view.

The play was staged in early 2024 and is a dramatisation of the life of Aneurin 'Nye' Bevan, who spearheaded the launch of the National Health Service in the UK in 1948. The play tells Bevan's life, looking back from his final days in hospital, as sedated he dreams back to his youth as a miner's son in Wales, early political life, his courtship of his wife, Westminster politics of WW2, and then the fight to found the NHS.

The staging is creative, being set largely in a hospital ward, but repurposing the props - including beds - as well as patients and staff to take on the various roles of people Nye encountered in his life. This staging took a little getting used to, and the play runs briskly along. But it certainly grabs the viewer's attention.

The central performance of Michael Sheen as Nye Bevan is riveting, and ably matched by Sharon Small as his Scottish wife and fellow Labour politician Jenny Lee. Their relationship feels vital to the play as a whole, but is surprisingly underdeveloped after their first striking meeting.

The foundation of the NHS happens near the end of the play, and feels surprisingly rushed, and a story only partly told. There is very effective staging of a group of doctors seen above, debating whether to join the new NHS. The toing and froing here between Bevan and the doctors is gripping. But then it's over, the NHS is founded, and the play finishes soon after.

An admirable theatre experience, though I think the play script could have balanced some aspects of the story better. However the performances are gripping, and the staging held my attention throughout. Recommended.
vivdunstan: Photo from our wedding in Langholm (martin)
On the way home from my bone density scan at Perth Royal Infirmary we called into Gannochy Duck Pond in Perth. Martin was particularly hoping to see their mandarin ducks - a very unusual thing to see in Scotland. The mandarin ducks were there but staying largely under cover, though he got some pictures. But there were lots of other birds to photograph. I especially liked this photo of three mallard ducks, with loads of interesting reflections in the water.

Three mallard ducks swimming to the left in a row across a river in front of reed beds. There are many reflections in the water, of the beige reeds behind, and the three ducks below. The reflections are shaky and wiggly, and quite artistic. The birds at the left and right in the picture are male, brightly coloured, with green heads, brown neck/chest and grey/white body. In the middle is a female mallard, with mottled brown/beige colouring.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Second of three appointments completed for my new root canal + new crown. Huge thanks to my lovely NHS dentist. I know I'm really lucky to have him. In awe at his skill which makes scariest things trouble free - I can even fall asleep during them! Also always good craic (he's from Northern Ireland). He trained at Dundee University, taught by among others my previous dentist, who's from the same West Yorkshire town as my dad. Small world.

I now have a temporary crown in place, and can eat fairly normally, but will be extra careful on that side for the next fortnight. After the dental appointment we treated ourselves to breakfast in a local coffee shop, including a soft breakfast roll of scrambled eggs and sausages for me. Felt really indulgent. And fun.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
My annual post about Rare Disease Day. A bit more verbose than in some recent years, with lots of links to further thoughts from me about related topics.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Extremely grateful to my NHS dentist who saw me at short notice. Problem identified, and the tooth is going to be saved with a root canal. Appointments booked for the New Year and a temporary medicated filling in the meantime. Very relieved.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Surprised but pleased at today's vote on assisted dying in England and Wales. Which does not apply in Scotland where I live. Having watched my dad die from a cruel and agonising terminal lung disease, I'm painfully aware how insufficient palliative care is in the UK now. And people rarely get the hospice care that they need. This needs to improve dramatically. But in the meantime, if this new legislation goes through, some people may be spared the terrible suffering that my dad experienced, and many others with particularly cruel and agonising terminal diseases currently suffer.
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 🙁 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: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Had my first NHS mammogram 4 weeks ago. Got the results letter in the post today. Nothing untoward found. They’ll call me back in 3 years or so. Those results came through quicker than I expected. It seems hardly any time since the day of the scan, in Carnoustie, on the opening day of the Senior Open golf championship. Still waiting to get a letter for my very overdue DEXA bone density scan. I haven’t had one since my last one 8 years ago, that confirmed I had full blown osteoporosis. But one NHS thing done and dusted!

Free LFTs

Aug. 12th, 2024 09:09 pm
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Ordering me more free LFT Covid tests - in Scotland patients eligible for antivirals (including the severely immunosuppressed like me) can still get packs of 7 NHS LFTs sent free in the post, as needed. Unlike in England where it's pot luck whether similar patients can find any free ones in a local chemist. As I just said to Martin "Whatever happens, I'm going to want to test daily for the next week at least!" My cough is worsening, but otherwise I'm still feeling good. I'd expect if I have caught it from him to show more symptoms in the coming days. If I do test positive I may decide not to ask for antivirals, depending on how I get on. But want to know if I do test positive so I know to pause my strong immunsouppression drug for a couple of weeks. Which I can't risk pausing needlessly. But in a Covid situation I've been told I should. The advice varies for individual immunosuppressed patients.
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
Martin has only an extremely faint positive today. And is feeling good. Though overnight he had extreme disco/sparkly visual effects, and a throat like a dagger in it. But good today. I am still testing negative. Though I may yet catch it from him, and get iller. But we are doing good for now. He is going to be working on the computer in the study today, and working from home all week.

He was masked up almost all the time we were in St Andrews on Friday, including in queues for the Cheesy Toast Shack and Jannettas. Both queues were phenomenally busy, and there were some scary coughs among the queuers. The first queue was outdoors, but unbelievably busy. The second queue was a mix of outdoors and indoors. So my theory now is that Martin probably picked it up in one of the queues (he hadn't been out of our house for over a week before). Which I was not queuing in. So I may yet catch Covid from him. And would, if I test positive, decide whether to ask for Paxlovid antivirals (very few people can get Paxlovid in the UK, but being severely immunosuppressed I am eligible). But if we're lucky it won't come to that ...
vivdunstan: Photo of me from Melrose Grammar School plus NHS thanks (nhs)
This afternoon I had my first breast screening appointment from the NHS. It is offered every 3 years to women in Scotland between 50 and 70. Sometimes you have to go to a hospital for it, but I was booked in for a mobile scanning unit in the next door town, Carnoustie. It took us just 15 minutes to get there this afternoon, when it can take up to 45 minutes to get to our local big hospital. We parked right by the scanning unit, so I hardly had to walk any distance. At the hospital I'd have had to walk masses. I waited until a short time before my appointment before going in, because it is a small space. They had two discreet changing areas, and a waiting area for others. I was seen soon. It was very caringly done, with discretion, and in a way that put me at ease. Not always comfortable, but not hard to go through. And the nurse was lovely. I will get the results by post in the next 5-7 weeks. Then be called back again in 3 years.

We hadn't realised it but today was the opening day of the Senior Open golf championship at Carnoustie. That probably explains why the car park was so full! It was good weather for them. Martin was excited by a plane flying around, and dashed out of the car to photograph it. Its flight path was a constant loop above the town. I wonder if it was filming or photographing the golf from on high. We didn't see much of the town today, and I was too ill today to go exploring. But we did notice that Carnoustie has an awful lot of hotels and pubs. I guess for the golf. The town has a fair number of golf courses, including a championship one.

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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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