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Sunday 1 November 2020

2020 MS milestones

By 2019, our sheds and our kitchen had become increasingly full of my collection of mobility vehicles. Taking up even more space than bikes (which is saying something in our house) I decided in 2020 some had to go.

First on the list were the never used Norman (my cheap normal foldable wheelchair) and Mac MacClaren the all-terrain Trekinetic that had served its purpose well in Corsica and Costa Rica. Both chairs seemed ridiculously huge and heavy in comparison to my made to measure tiny Purple Gekko I'd been using since early 2019.

Ebay to the rescue and both chairs were collected by new owners just before lockdown. 

Meanwhile I couldn't remember when I'd last used Sitzkreig my little junior TravelScoot. 

Sitzkreig

Relying on a motor, it always felt like I was being lazy by choosing this option. What I call the 'scooter' stage of MS is a slippery slope. Ok, walking to town is not possible and it's a good solution, but it felt like giving up. With determined practice my arms have become my legs and the Purple Gekko is now my means of getting out independently. 

So  Sitzkreig was despatched to a new owner in June and my PayPal balance has never been so healthy!

This might not sound much, but I am proud to progress to a wheelchair and keep my active independence. Not relying on a motor or being pushed around by anyone means a lot to me. 



Let's roll! June 2020

Downhill I win! 😁



2020 milestones

Ignoring COVID-19 it's been quite an eventful and celebratory year for us. 

Joe and his long-term partner Dustie married in Edinburgh in February, prior to Dustie taking up her new post lecturing at Busan University in South Korea. After a fair bit of battling with the Korean visa system and Covid travel restrictions Joe finally joined her to live there in July:

Joe and Dustie in Busan

Louise celebrated her 30th birthday in June and started her new post teaching an international masters course in ecology at Edinburgh University:

Lou with Molly the dog
 


My sister-in-law Kerensa quickly raised her by 10 years to turn 40 and I trumped the pair of them with my 50th to finish the month of July:


Not to be outdone Ali followed on in September:

South Devon sea dip to celebrate Ali's 21st




And here's one of all three of them from September 1999:



Today they are happy and healthy. 
 So proud of them all 💖🙂😊




 





Thursday 4 June 2020

2020 #loveguernsey

Like all of us, planned summer holidays are being unpacked. Latest casualty a regular stay on Guernsey that we've been doing since before Alistair was born. 

View towards Town from Jerbourg


Guernsey parkrun July 2019


Islanders 'Guerns' are of course sad to lose their summer visitor season, but are at the same time rejoicing and have good reason to be immensely proud. The Bailiwick (Guernsey, Alderney, Sark and Herm) have had no cases of COVID-19 since the last patient recovered at the end of May.

It takes a woman to be in charge.




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Guernsey's borders are closed for non-essential travel until (at the earliest) September. The owner of our holiday accommodation took the trouble to personally call guests to explain the situation and arrange for full refunds to be made. 

Vazon Bay Apartments may not be welcoming any of the usual visitors from the UK mainland and Germany but will be far from empty.  Staycations at winter-rates are available to residents throughout the Bailiwick. With popular Crabby Jacks restaurant next door now reopened, it'll be a busy and happy summer at Vazon Bay. 


We'll be back. 

Vazon Bay July 2019




Tuesday 2 June 2020

COVID-19 week #11

11 weeks on from lockdown on Monday 23 March and we've arrived in June. In the early days steets were eerily quiet,  hardly anyone around and very few cars on the road. Children painted rainbows of thanks to NHS and essential key workers (locksmiths everywhere have never felt so appreciated). It taught us who is vital and what we can manage without.





Guess who was  nominated acting child in our house?


Thursday evenings at 8pm saw a nation stepping onto doorsteps, applauding and banging saucepans. If nothing else it was good for neighbourhood camarade. Other than that, the point of applauding people for doing their day jobs soon waned. As many NHS employees said, we don't need applause, please just pay us properly!

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During the early weeks we all dutifully did as told #stayhome except for essential shopping and once a day exercise. 


Combe Hill Woods. I've rolled a tough one mile trail along through here many, many times now whilst John and Ali ran quite a lot further.  

Indoors we discovered Zoom and businesses everywhere wondered why they'd ever wasted so much time, effort and money on international conferences. Skies empty of aircraft, I reckon at this rate we've been on track to reach net zero carbon emissions by the end of this year. Result! The earth says thank you.  

UK Coronavirus deaths peaked somewhere at the end of April.  Tragically many doctors, nurses, carers and porters lost their lives (viral load on wards must be sky high, coupled with a reported lack of adequate protective masks, gowns and gloves) and our, somewhat overweight, Prime Minister Boris Johnson nearly died.

Just as #stayhome was starting to wear  thin on Sunday 10 May we were told in a bizarre pre recorded government publicity stunt...


Algebra that had everyone scratching heads

...that we could all get back to work, go out as much as we like as long as we #stayalert 

Stay alert? Forever more I will think of viruses sneaking up behind us!



As numbers of new cases and deaths fell, the sun shone. With the fine example of Dominic Cummings, chief advisor to Boris Johnson, trust in the government plummeted. Sales of charcoal, burgers and beer soared as much as the temperature; thousands flocked to beaches and pretty much did exactly as they pleased



Things are starting to open and life is taking on a new kind of normal. Have been busy making masks for us all when inside shops, on a train or (for Joe) a plane to South Korea.


Strangely none of the men liked my vast collection of lovely floral fabric scraps so had to invest in tartan alternative!

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As at time of writing, nearly 40,000 people in the UK have died from COVID-19. Or as high as 50,000 if suspected deaths are included.

Either which way, we're not doing very well. We were slow to shut down, are we too quick to open up?








Wednesday 1 April 2020

2020 all change

Hope you are all keeping well.

What a change to our lives 2020 has brought.


New vocabulary, that would have meant nothing to us as recently as January, 'self isolation', 'social distancing' and 'shielding', has now become commonplace.

As I understand it, only a small number of people living with MS are included in the vulnerable group  initially told by the government to shield (stay at home and not go out at all) for 12 weeks from Monday 23 March. These are:

1. Those who are very immunosuppressed
(eg treated recently with the chemotherapy drugs alemtuzumab, cladribine and HSCT).
2. People with very advanced MS.

I am pleased to say I am not considered to be in this group.  I do have chronic lymphopaenia with a total lymphocyte count circa 0.6 x 10^9 cells per litre (normal range 1.0 to 3.0).  This dates back to 5 years of beta interferon followed by a short 4 month course of dimethyl fumarate (Tecfidera) in 2015.

Lymphocyte profile May 2017

Tecfidera caused long-term depletion of CD8 T cells (these target intracellular viruses). Ironically, Tecfidera is considered to be non-immunosuppressive and is advised as safe to take during the Coronavirus epidemic. Perhaps I was just unlucky.

Whilst not quite self-isolating, I am of course (as everyone is) staying at home apart from sometimes daily exercise and with John making as few shopping trips as possible.

When I had a neurology appointment at the very beginning of March, I was surprised to be told that rituximab treatment (next due at the beginning of June) was planned to continue as normal. All fine in principle, but as things have moved on, I can't imagine travelling to London by train in the current climate. Rituximab may have to wait.

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In the initial weeks of the UK epidemic, light hearted cartoons did the rounds on social media. They feel inappropriate now that the gravity of the situation is becoming so real.

A few favourites below as a record of those early days:


1. Wash your hands and don't touch your face



2. Almost worse than the virus itself, fear spawned a spree of selfish panic buying, stripping supermarket shelves bare and exposing the worst of human nature. The Germans have a perfect name for it.

Hamsterkauf 

3. And it seemed everyone's biggest fear was running out of loo roll.


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Stay safe, be kind and look after yourselves everyone.

AM xx