Feeling disconnected from the Universe because of... - PMRGCAuk

PMRGCAuk
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Feeling disconnected from the Universe because of your GCA/ PMR and Chronic Pain ? Need a pick me up? Try looking up at the sky tonight!

I think that there is a beauty and poetry in the fact that the partial eclipse of the Moon tonight is on the 50 the Anniversary of the Launch of "Mans'" first Moon Landing.

It is as though , the Universe , and the Moon herself , have decided to celebrate and give a nod of admiration to the achievements of " Man" , letting us know our efforts to make a greater connection to them have met with their approval.

The event itself begins at approximately 9.01 BST in the UK , but if you have a cloudless sky you can watch the zenith occur between 10.15 and 10.40 pm , the peak should occur at 10.31 in the UK.

I just suddenly thought , knowing that most of us struggle at sometime with PMR / GCA , and often feel disconnected with the activities of the World around us , that this might give us an opportunity to feel at one with the Universe again.

A really easy way to improve our Wellbeing with very little effort.

We can all take part in a little Moon Watching , and feel like we are still taking part in something that the whole world is celebrating.

People in other time zones can join in too , just check the times on your news stations.

Its so easy , even with the Fatigue.

We can watch it from a window or a balcony, or in our gardens on a chair, with no real need for energy or preparation.

We could create a simple memory with our grandchildren or children by inviting them over for half an hour to enjoy it with us , or , if they live too far away , share it together while chatting on the phone as we all watch , without even having to leave our seats.

We can photograph it on our phones and keep the memory of what we did together forever.

And , if we live alone , we can help reduce the feeling of isolation and loneliness that Chronic Illness gives us, by watching the moon , and knowing, we are doing so together with millions of others around the World , once again part of the Circle of Life, marking the achievements of Humanity and celebrating the Wonders of our Magnificent Universe. That's a treatment for Fatigue and Low Mood that could outdo anything prescribed by a Doctor!

If you feel well enough to be near a window , I hope you try it , and even if you are at home alone know that you are not alone in this because at least you will be sharing it with me and I will be thinking about you.

So , if you pardon the paraphrased pun , " it may be one small step for us , but one giant leap in Wellbeing for PMRkind ! ", ( I think Neil Armstrong would approve!).

Enjoy the simple pleasures and let's make this journey with PMR/ GCA more bearable together.

Bleary-eyed aka Major Bee , Roger and out!!

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We’ll be with you Bee 🐝 sitting in the Conservatory hopefully, if not we’ll check out the best view from the Garden 🌓

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Excellent I hope you get cloudless skies and that little sense of calm , hugs , xx

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Never miss a full moon!

What a lovely idea, all of us watching wherever we are, and something we should all be able to do.

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I know , I think the idea of us all sharing a bit of therapy together given to us by the Universe for free is a very lovely thing.

Just thinking about it now is making me feel a bit happier and more energetic.

Major Bee , Roger and out Ground Control xx

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I hadn't realised it was an eclipse tonight but will be watching now. If not from the garden then from our bed with maybe a drink as well. Hope you enjoy watching as wellxx

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Raise a toast to the Moon , Neil Armstrong and the Health of us all with your cup of warm milk ! Big Moon Hugs , Major Bee xxx

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Now who said it was going to be warm milk? I might go the full hog and have cocoa!!

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You little devil 😋😂😂😂

I'm feeling quite motivated now and I might head down to the beach with the telescope, a flask of hot chocolate , and a good lounger!!

Seems like perfect timing , as it is Grandma's ( my youngest daughter ) birthday tomorrow and obviously the GCA / PMR and other health woes at the moment had put pay to any major partying.

Taking photos together under the Moon will be a much better way to celebrate and far less tiring .

Enjoy your choccy treat , xxx

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That sounds like a great way to spend a birthday.xxx

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Lovely post. A time to remember the past and look forward to the future.

I’ll be watching with you all 🌔❤️

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Excellent , there's not a more natural and non invasive therapy for our Chronic Fatigue and Wellbeing than a little gift from Nature itself , glad you will be joining me xx

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We are afterall made of star stuff. Bear in mind that the chemical makeup of the universe suggests it smells of raspberries. 🌚

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Or raspberries smell like the universe. .....🤔

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That's awesome , I love raspberries.

You just made me giggle , that comment about us all being made from stardust reminds me of one of my friends , a physicist , whom always used it as his chat up repartie , and , unlike with most of the Science Geeks and the Nerds on Big Bang it worked everytime!😋

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😂😂😂

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Sadly I think it was something else I heard it on first.

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Joni Mitchell's Woodstock I think 'we are stardust, we are golden....'

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Carl Sagan with star stuff I think...hanging onto Joni and others coat tails.

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Yes the Artists often show the Scientists the way forward when understanding the creativity of thought on the Universe and how it works.

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Imagination required in both spheres but the western canon breaks that connection. That's why scientific breakthroughs are often seen to be by mavericks.

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So that's why I didn't sleep well the last couple of nights!!!

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Yes, watch out folks !!

PMRPro is having some weird symptoms , there may be some werewolf activity in the mountains tonight!!😋🐺🎑 Howl!!!!!

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It's all the fluid in our bodies getting dragged around. I think it's been said by nurses, police etc that full moon does make for some interesting situations.

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You see I thought they were all usually far less PC about it and say ,

" It's a Full Moon , that always brings out the nutters!!" 😋😂😂😂

No wonder I'm considering venturing from the house and watching the Eclipse on the beach !!! 😋😲😝

Watch out North Wales !!!

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I was being sensitive and caring.🤗

If clear the beach a lovely place to watch.

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Do you get even worse with a full moon then. Perhaps you will be howling too!

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It has been known 😋😂😂😂😨

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Which beach so I can gate crash? Just kidding, it will be enough effort getting from the cabin in the back garden to the conservatory in the front the way I've been all day 😁

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Cemlyn , it's easy to park very close to the beach and so little walking on a flat path , and it will be quiet , it's where I used to Volunteer Warden for the NWWT looking after the terns.

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I don't really know that part of Anglesey at all. No sign of the moon here yet.

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I’ll be watching!🌗

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Fantastic , it's bright orange and low in the sky at the moment , apparently called a Buck Moon , so I think it's going to be quite a sight , fingers crossed the sky will be clear enough to see it!

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Or blood moon.....

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I thought I'd use the alternative term for an orange blood moon , I'm trying not to encourage PMRPros potential descent into lycanthropy !!!🐺

😋😂😂😂

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😂😂😂

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Thanks for the heads up. Mind you the US, Russia, China and India just want to turn it into quarries and mines don’t they? I doubt that the man in the moon will welcome that.🌚

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I'm not going to think about that tonight , I'm just going to bask in the positivity of the moment instead!😍💏💑💖💕💞🌌👾🚀🌌

There's some activities of the World and Humanity that I'm more than happy that PMR has disconnected me from ! 😋😘

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JOMO the joy of missing out. I have that too. I was only reading about it yesterday.

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Is that just text speak , or are other people using it as a term for a thing?

If so , I'm definitely going to adopt the term , I think I've always been a JOMO Enthusiast , even before any Chronic Illness crossed my fevered brow!

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Look what you have started!! We wont know what shes messaging now as everything will be just shorthand!!

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You need to get down with us kids!

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You are both as mad as hatters!!

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Be honest , half the time nobody understands what I'm going on about , even when I use the full vernacular with added diagrams!😂😂😂

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I must admit some of your pm's require some decoding late at night

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😂😂😂😂😝

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I am never sure whether its just you medication or alcohol!!

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I have jomo rather than fomo but let's face it yolo

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Oh good grief , I can't cope , even though I'm ' Down with the Yuth" I've got a brain blister now !!!😨😨😨😨

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I can never remember what each means for more than 10mins.

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Oh, I like that. JOMO. New one for me and the older I’ve gotten the more I relish it. Makes my life calmer. 😌

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It' been our attitude for a while now

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Why would anyone even think about the moon in any other context than how we landed there 50 years ago.x

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I think of it as a land owner , we have certificates for 10 acres of the Moon!

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Muppet!

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It's true !!

I bought it as a first anniversary present for the OH as it is a full certificate with a map of which coordinates we own , it seemed like a novel gift for the paper anniversary for an avid astronomer!

Of course , I was hoping it was made of cheese , now I know differently I'm quite disappointed.

Apparently though , these moon sales are all fully legal , and about half of it is sold , so if the Powers that Be want to mine on the Moon they going to find themselves in trouble because people like me whom own bits of it won't be giving them permission to do anything to the lovely lady anytime soon .

We Moon Owners will have our day in court!!😋😁

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We have looked at them before but never done anything as we are so long past any anniversary that even vaguely includes paper now! Saying that I am not sure I would want to take your case to court anytime soon but I can always reccomend another barrister! Not as good obviously!!

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😂😂😂😂

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Sorry - having a hard day. I will look at it and hope .

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I hope it helps lift the heaviness of the day , and understand the Fatigue does make it hard to make you feel enthusiastic about anything .

Wishing the Moon can lift you up and hope things start getting a bit better for you soon😘

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Fomo it’s cloudy in Sheffield.

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Oh no!

All I can say is you may not have been able to see it but we still connected as one in thought .

I sent up hopes and wishes for all xxx

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Hope we get to see it as per bee....think good thoughts 💜

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Aww! Thanks.

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Enjoy. North America misses out on this particular eclipse so we shall be able to enjoy the full moon in all her glory, provided clouds don't gather!

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There's an evening following the Apollo landings here tonight heron.

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We've been pretty well inundated with news items and programs, even a call in show this afternoon to the author of a book on the history of the moon landings. Hard to miss! I saved front page news items for years but eventually threw them out as so much has happened since with space exploration it no longer seemed so important. But of course it is important, a landmark in human evolution.

I find the exploration, by instruments, of the outer planets and their moons much more interesting.

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There is a documentary series on science fiction about outer space on bbc4.... not sure a) avaible outside UK...b) would interest you...I know you like non fiction space stuff.

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Thanks. I wrote my thesis on the fiction of C.S. Lewis, which of course included his science fiction trilogy. When I recently reread them I was shocked at how prescient much of what he wrote in That Hideous Strength was. Indeed in some ways things are worse than he imagined they might be. I had trouble getting through that book, although I was also reminded throughout the trilogy what an excellent writer he was. They don't make them like that any more!

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I love his works , not many people know about the other things he had written .

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Have you read Till We Have Faces?

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Is that the really intriguing one with the retelling of Cupid and Psyche?

If so yes , loved it , it really made me think , real philosophical questions on illusion and illogical behaviour.

I can also say that my love of the bizarre and surreal , like CS Lewis , has partly come from us suffering the same type of migraines , we both have ) had the condition named after his most famous novel , Alice in Wonderland Syndrome!

The silver lining if it being enhanced imagination at least for Me and Lewis.

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Umm, Lewis Carroll?

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You see that's the brain fog at it , and the fact that I was just PMing Scats and talking to her about feeling like a dormouse at a pub quiz just before I answered you!!

Must remember , cannot try to have two conversations at once with Brain Fog !!!😨

Yes , Lewis Carroll and I suffer from the same headaches named after his well known book , but I think I'm right about C.S Lewis ' , 'Til We have Faces' , aren't I ???

It's been a long time since I read it , might have even been at Uni , might hunt the collection out again for my Summer read , so thanks for the inspiration xx

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Yes, you are right about the retelling of Cupid and Psyche.

I first found Lewis when I read The Four Loves. I read a lot of his non-fiction as a teenager and didn't discover his Narnia books until they were being issued in paperback in the 60s. I happened to have a summer job in a restaurant next door to a bookstore, so I spent all my tips money on paperbacks, and learned about this whole other world of fantasy fiction. Lewis was also a serious scholar of course, and I have a few of his academic works, the ones available as accessible paperbacks. Haven't reread any of those, although I did read them when I bought them.

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Yes. I even published my chapter about that book in a probably now defunct journal called Mythlore.

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I'd like to read it , I will have to see if I can get it over archives on the internet . It will add into my Summer read X

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It was more of a fanzine in its early years. I subscribed for a while but when it got really academic it lost its appeal to me as I was not a scholar in that sense, just a fan of fantasy literature.

dc.swosu.edu/mythlore/

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I'm definitely looking it up , and can't wait to reread his works over the Summer , thanks so much for inspiring my next block read.

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I find watching my OH trying to set up his telescope last minute in the dark the most amusing and intriguing activity of all in space exploration.

Sometimes it's better to watch than the event itself!!😋😂😂😂

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🤣🤣🤣

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In fact just found its 2 nights...DVR set.

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That's a shame . No Eclipse but at least we can still be connected by looking at the Moon on this special occasion and feel a little closer to one another xx

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I have seen moon eclipses, including at least one which I think must have been a full eclipse not so many years ago.

What troubles me is the loss of the night sky with our brilliantly lit streets now. Children today have no idea what a truly dark sky is like. In fact I went to a dark sky site in Ontario a couple of years ago and although it was dark enough we could make out the galaxy in Andromeda it was nothing like the dazzle of stars I enjoyed as a child when I went to summer camp.

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Luckily , Anglesey is one of those Protected Dark Sky Category zones now , so it isn't too difficult getting to a good spot to see things well.

Before we moved here we met a man whom worked for freelance for an Astronomy Magazine at a campsite who was on a break after just returning from the Red Sea for some Stargazing .

He said the sights he had seen from the door of his tent up here had equalled , if not surpassed , his experienced out there , so I think we must be very lucky , on the two and a half nights a year the skies are clear of course !😋😁

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You are lucky. Living where I do there is an extraordinary amount of light pollution. It may be a bit better outside the city now that we've switched over to LED lighting, but that same lighting makes the night sky within the city even less visible to us. And my new home is impossible. I used to be able to step outside into my backyard and see at least the major constellations, have even seen northern lights (with difficulty because the neighbours all decided that was the evening they'd have their outdoor lights on) but now it would require some effort to find a similar place, even as inadequate as it was.

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I sit in the shadow of the house. Far from perfect but better. I used to live in rural Wales and I've never seen the stars so clear since.

Venus is very bright at the moment.

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It is isn't it , I noticed that last night.

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i haven't even noticed Venus. :( But I did see Jupiter late winter putting on a show.

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So did you see anything past your trees ??

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Snowdonia where we live is a Dark Sky area, I didn't know the island was too. I went to Turkey in a minibus in 1963 when it was still an exotic place to go. The night skies were brilliant, brighter and closer seeming than North Wales, we often slept on the beach under the stars. Went again with my husband around 2000 and was really disappointed that the atmosphere was hazy so no spectacular night skies.

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Wow! That sounds amazing .

We are just about to go down to the beach now to watch the eclipse as it seems clear enough , but I wouldn't dare sleep on the beach in Wales , not just because of the PMR , even before it , it's flipping cold at night!

Hope you enjoy it from your window xx

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I'm just settling down to watch now but no sign of the moon yet unless it's behind a tree. It's still early though

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Very cloudy here. But I have a good view of south eastern cloudy sky!

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Very Cloudy here in Shropshire, no sign of the moon 🌑 sad 😔

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So sorry , hope you felt my happy thoughts coming your way though xx

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Not a chance for me....total cloud out. Good luck everyone 🤗🌻

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Did you see anything at all in the end?

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No. Total coverage of grey black cloud. Not even a moon glow coming through. Next time...I have photos of the total eclipse of the sun s few years ago.

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Oh poop , poops !!

Well, we were connected in our efforts in spirit even if the moon seemed to have got a case of severe shyness in your neck of the woods .

I was thinking about you all and wondering how everybody was feeling , and I'm sure everyone else was doing the same thing at the same time too , so that's the connection that really counts .

Next time we will have to come together in one mind on something that isn't dependent on the weather !

Big hugs and moon boots xx

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Stomp stomp...😊

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🌌🚀🌌💫🌟🌠🌃🎑💛💛💛

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Did the moon ;)

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Hoorah xxx

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We have seen the eclipse down in Sussex!!

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Yeah , I was beginning to worry I had sent you all on a wild moon chase and you'd all be after me with burning torches and pitchforks tomorrow for making you stay up late .

Hope you felt my heartfelt wishes heading you way xxx

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Ive seen it too- had to walk down the lane a bit to see it because otherwise it was behind trees. I would have liked to stay and watch it but it was too cold. Tucked up in bed now

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I'm so glad you caught a glimpse , I thought you might as we had done.

Especially as you had to walk to see it too , we have just been connected by a big dot!!

( Or at least part of one ) hugs xx

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I'm so sorry for all those people who were clouded out!

At least we were all together in will, heart and spirit even if not in visibility.

We got to the beach and were very concerned we would be clouded out too , but just before 10 pm the moon popped what was left of its ever shrinking head out , so I was rewarded for my walk from the carpark.

The view got better by the zenith and was really great to see after it .

I sent out little wishes and prayers for everyone of you though , and thanked the moon for bringing us all much closer together with the World and one another .

I hope all those that did catch a glimpse enjoyed it , and also felt they had achieved

" One small step for fighting back to reality over Chronic Illness and one giant leap in Wellbeing! "

Night , night Friends xxx

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I would liked to have watched it for longer but got too cold. I didn't have to walk very far at all but I decided that to go to the house and back to get a blanket would be too much, especially as I'd been flat out all day. It did give me a boost though - I walked to see it without thinking really!

My grandsons all got to see it too which was good

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Flat out , do you mean busy or with Fatigue?

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Flat out with fatigue! It's a long time since I've been flat out busy

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Oh gosh , it seems that Moon Therapy is successful then , as we both managed a little walk and got a boost watching it for a while despite suffering the Fatigue.

Hope you still feel the benefits today and our night time adventure hasn't taken too much out of you.

Hug for the day xx

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Still really tired today but it did give me a boost. I think some of my tiredness can be explained by the birthday cake I ate over the weekend. Sometimes I can get away with eating wheat but other times it can affect me for up to four days. Also I'm in the process of upping my dose of gabapentin. I've been taking 100mg ×3 per day and now working up to 200mg × 3. I'd been taking 2 in the evening for about a week and on Saturday doubled my afternoon dose too. We're going away for about a week on Friday so I hope im doing ok again by then. Won't change anything until we get back

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How are you after your expedition?

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Pooped but happy so I'm taking that as a Win!

It was my daughter's birthday yesterday so that needed a little energy and I think the Moon Therapy gave me a mental boost to manage a little celebrating.

I'm not suprised that you are suffering with severe Fatigue if you are in the process of increasing your Garbepentin medication .

It can have very hard Fatigue side effects ,sand that feeling of numbness and not being at one in yourself.

I hope the effects settle down for your holiday , I think you are right about not continuing trying to make more drug changes while you are away. You can't tax your body trying to do extra activity and get itself used to drug changes at once , it adds to the Fatigue.

Lots of pacing yourself , rests on the go , and fluids required for a trip with Fatigue.

May I suggest regular fluids to be taken in the lovely cafes where you visit , along with the odd slice of gluten free cake. 😋😁

I find I can't cope with eating wheat or higher sugar or dairy when the Fatigue strikes .

It's harder to be able to cope with the extra work the digestion has to do .

I usually cut out those entirely when going through the Deathly Fatigue and eat lighter meals , and less or no red meat.

Increasing your intake of Magnesium , Potassium and Zinc and the usual vitamins might help with reducing the symptoms too.

Have a lovely break , you deserve one , and maybe keep looking up at the Moon for added energy as you go xxx😘😘😍

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Thank you for your sensible advice. I'm glad you feel OK. I had thought the extra Gabapentin probably wasnt helping, when I doubled the evening dose the side effects seemed to wear off after a week so I'm hoping that will be the case now. Wheat generally takes 4 days so should be all clear by tomorrow. I'll take your advice and have lots of café stops for decaff cappuccino and gluten free cake 😊. It's a complicated trip this time and I'm quite uncertain about it but I know I'll be OK once we go. I have my trusty wheelchair in the back of the car just in case. A year ago John decided he'd like to see a Gilbert and Sullivan opera as a birthday present. It took me a long time to find one but eventually booked tickets for the Mikado next week. That's been booked since February. The complication comes because a friend of John's has since invited us to play croquet with the Jowett owners club so we're going to stay with him in Measham for the weekend. Luckily we were able to extend our B&B booking in Buxton to include Monday which is good. I'll have all day Sunday and also Tuesday and Wednesday in Buxton where I don't need to do anything if I don't need to. I did find a nice cafe that serves good gluten free cakes last time I was in Buxton which is good.

I did take Magnesium for a while but stopped because I thought it wasn't recommended not to take it with Gabapentin?

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I think that has to do with the time it's taken in the day with Garb much like taking Calcium and Pred , but I will double check through my old notes from when I was on Garb and get back to you on that just so you feel confident with it before you take it.

If you do still feel alot of Fatigue after getting used to the new Garb doses and find its is not being as effective as you would like , you might like to consider requesting to try Pregbalin instead ( as long as it doesn't effect your other meds ) .

I did need my Rheumy to repeat several times to the GP that they had to change me on to it , after years of them not telling me that they had been told to make the change by the Pain Clinic , it was all down to cost.

They never offer it straight off as it is more expensive and is virtually the same drug , but the side effects are less , especially it's effects on your stomach , the dose is smaller too because it is slightly stronger and more effective.

Bon Voyage , sounds like you have a perfect trip sorted my little Yum, Yum!😘😍

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Just double checked my old meds list , you can take Magnesium in a general supplement or as an additional extra booster supplement on top of your general vitamin pill for Fatigue and Muscle Cramps as long as you take it two hours before your Gab dose , or 4 hours after it.

I used to take it at lunch to cover the bases.

I have low end / norm blood pressure and it didn't change my blood pressure results while on Gab. I just kept an eye on it.

I still take it now at lunch while on Pred , and take my Calcium then too , mid meal as with any supplements to help with absorption as it stays in the stomach longer and is absorbed with the food.

See how you go and you can choose your options drug and supplement wise after you have got the balance on your new morning dose after your lovely trip.

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Nope, too cloudy here, last time I saw an eclipse we were sitting on a beach, Gold Coast, with hundreds of people. Happy days. 🙃

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Sorry it was cloudy but we all connected in our thoughts at the same time while we tried Moon Watching and that's what really counts . You provoked an amazing and happy memory too about an Eclipse on the Gold Coast and that must have been as uplifting as seeing the Moon last night itself. Maybe Moon Therapy should become a regular thing! xx

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We’re all watching the same moon

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watched last night in a quiet, dark part of France. A wonderful feeling. Made me smile. Thanks blearyeyed for encouraging and loving post.

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You are the first person I have heard from over on Mainland Europe whom reports getting a good view.

If I remember rightly you've been through alot in the last year and live out there alot on your own ??

So I'm really happy you weren't hampered by the clouds and it made you smile.

We were connected together with a little Moon Therapy in friendship and I think that is a wonderful feeling.

Take care , big hug xx

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I could possibly have had a good view, no clouds - but I really couldn't summon up the enthusiasm to go outside and see of the moon had risen over the mountains. The balcony points the wrong way ...

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yes, all connected! Big return hug. Living in France permanently now but these days a little geography doesn't get in the way of being in touch. Long live modern technology!

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Thank you so much. Blearyeyed you are always so spot on with advice.

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Was beautiful and such A lovely pink colour as well x

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Bravo! Well said! This gave me goose bumps! We are with ya!!!

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