Enc news: Hi there all you fellow... - Encephalitis Inte...

Encephalitis International

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Gandalf2 profile image
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Hi there all you fellow Enkers, I haven't posted for a long time as there usually isn't much to report. It's like watching a glacier.

Plus I've been dealing with a succession of UTIs and other bacterial probs - Covid (I'm not vaxxed and it was a bit like flu), pneumonia and general fatigue lethargy.

I hate it when people say 'we're on a journey' or 'your not suffering - 'just experiencing' .....

they please me not.

I may have posted this before, see link below, I can't remember. It's a link to 'The Hashimoto’s Encephalopathy/SREAT & Seronegative Autoimmune Encephalitis Alliance' They are somewhat different to the UK Enc Society, are based in Chicago and LA and seem to be fairly lively and may possibly have info not yet with the Enc. Soc. If you register they can send news etc. to you - no fee.

They do podcasts and videos, book reviews, medication info, US meetups and seminars.

hesaonline.info/

"HESA was founded in 2012 by Susan Foley, a productive businesswoman and Nicola Nelson a successful environmental attorney. After their diagnosis of Hashimoto's Encephalopathy they both scoured the internet for information about HE... and found little to no information.

Soon, they both found an online support group where they happened to find one another and soon decided they wanted to help others with this little known disease. That is when they formed HESA...and the rest as they say is history!"

Have a gander (look) and see what you think .... I'm sure they will welcome news/feedback.

Well yes, now here's some news about my 'journey' with Enc (engaging not suffering) -a joke.

Prior to my latest UTI (and they seem to be running out of anti-biotics ....) I went on a trek to a waterfall in the local countryside at Ingleton. Very thrilling and momentous and a great treat for my wife, nephew and I. It involved about a five mile walk over fairly rugged ground at times with steep gorges and furious torrents. Hardly any loose dogs and with my walking pole I could ward off any miscreants - some sort of French bulldog, whose owner assured me was quite safe - yes, sure. I was wearing about £400 worth of waterproofs etc and don't want them torn. The downhill return was easy but treacherous in parts and passed the remains of a slate quarry, quite interesting.

Our nephew was pleased to discover a small water insect which further research identified as a stonefly larva/nymph.

pondinformer.com/wp-content...

"Stoneflies are of the species that are intolerant of pollution, so having them in your pond is a good sign! In fact, they require between 8 and 10 parts per million (ppm) of dissolved oxygen. It’s possible for them to spend several years underwater as larvae or nymphs before they emerge as adults. Like mayflies, the adults have an incredibly short lifespan – about a day or two, just long enough to mate and lay eggs. The nymphs have gills in their armpits that enable them to stay submerged, and are typically less than an inch in size, making them palatable for many fish."

"What is the difference between a nymph and larva?

A nymph is an immature form of an insect that shares the general appearance and lifestyle of the adult. A larva is very different from the adult form, but transforms into the adult during an inactive pupal stage. So it was a larva - would look different as an adult. So I suppose human children are nymphs .....

We enjoyed a short visit to the village with rather expensive cottages, a shop and a couple of pubs. My wife bought me a Cornetto, sadly I was very poorly on the drive back and discovered what happens when you open the door window at speed and try to vomit outwards (sorry folks). I was glad to get home.

After I had a bath and a couple of days rest we went to enjoy a King Charles lll Coronation Tea at a local stately home. I avoided the complex delicacies and tried a black coffee, which (as is usual) I couldn't taste at all. A nice day out nevertheless and another successful addition to my bank of 'new memories' as advised by my psychology support nurse/lady/doctor/person. The trees are in leaf the birds sing, a warm wind may blow and the days lengthen, hurray!

I was poorly again on the return journey but we managed to come to a halt this time, slightly to the distress of the vehicle behind which peeped at us. I waved as they went by, courtesy costs nothing.

Often with Enc. it's difficult to gauge how well one deals with difficult and novel situations but I felt I was coping quite well.

That's part 1

G2

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Gandalf2 profile image
Gandalf2
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7 Replies
OldGnome profile image
OldGnome

Wow G2, it sounds like you have suddenly started to spring back to life from the sound of all of your adventures!!!

I was wondering where you had gotten off to and hoped that you were doing OK.

I got Covid for the SECOND time this past December, despite being fully vaccinated. The second round really threw me back quite a bit in my recovery, but very lately, I have a strange ability to accomplish tasks I could not do last year.

With any luck, I will resume my recovery and end up with less fatigue as an end result!

Don't forget, I am still looking for my elusive convertible and since a Caterham7 is out of my budget, a Mustang GT will fit the bill. Perhaps we can race around a bit and hopefully stay out of trouble! The Mustang is a 4 seater so your wife can join us in a ride to keep things under control, as needed! 😆

Glad to hear that you are having some fun and enjoyable time with life now!

OldGnome

I actually sat in this one at the local dealer....

Caterham substitute
Gandalf2 profile image
Gandalf2 in reply to OldGnome

Go easy there, hope the vaxx works OK.

HSE_Survivor profile image
HSE_Survivor

Gandalf I used to be an English teacher before I caught E, and can I just say I love your style of writing - you definitely have a gift . You bring a description to life , especially when you “discovered what happens when you open the door window at speed and try to vomit outwards”. Thanks for making me smile this morning . 😊

Gandalf2 profile image
Gandalf2 in reply to HSE_Survivor

I taught Tech and whatever they could shoehorn me into. No textbooks so had to devise own worksheets which helps literacy and summarising (in the UK). Golden years but PTSD got me in the end, now retired. :-)

Wygella profile image
Wygella

Brilliant update. Thank you. Cheered me right up. Although I suspect the vomiting/ car interface bit whilst funny to read was less so to experience!

I only live less than about an hour and a half from Ingleton. Love it all round there but it’s years since I walked up the waterfall. Well done. That’s a heck of a climb. Also I agree about building new memories. Some of mine over the past 5 years are shinier and happier than the ones I’m sure I had years ago because of the sense of achievement.

I am not on a journey nor am I experiencing whatever. But I am learning to live differently and embrace new experiences and it sounds like you are too Good for us!!!

GreenBamboo profile image
GreenBamboo

Hi G2,I have just caught up with your adventures and laughed out loud.

Your writing reminded me of Bill Bryson, superb!

I am looking forward to part2 😀

Gandalf2 profile image
Gandalf2 in reply to GreenBamboo

Thank you very much!

Praise indeed.

I'll try a Part 2 soon but words and memories slip by like eels.