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

PMRGCAuk

20,272 members37,956 posts

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!

Blearyeyed profile image
128 Replies

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!!

Written by
Blearyeyed profile image
Blearyeyed
To view profiles and participate in discussions please or .
128 Replies

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

Blearyeyed profile image
Blearyeyed in reply to

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

scats profile image
scats

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.

Blearyeyed profile image
Blearyeyed in reply to scats

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

Yellowbluebell profile image
Yellowbluebell

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

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

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

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

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

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

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

Maisie1958 profile image
Maisie1958

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

I’ll be watching with you all 🌔❤️

Blearyeyed profile image
Blearyeyed in reply to Maisie1958

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

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

in reply to

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

Blearyeyed profile image
Blearyeyed in reply to

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!😋

in reply to Blearyeyed

😂😂😂

in reply to Blearyeyed

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

maria40 profile image
maria40 in reply to

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

in reply to maria40

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

Blearyeyed profile image
Blearyeyed in reply to

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

in reply to Blearyeyed

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

PMRpro profile image
PMRproAmbassador

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

Blearyeyed profile image
Blearyeyed in reply to PMRpro

Yes, watch out folks !!

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

in reply to PMRpro

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.

Blearyeyed profile image
Blearyeyed in reply to

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 !!!

in reply to Blearyeyed

I was being sensitive and caring.🤗

If clear the beach a lovely place to watch.

scats profile image
scats in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to scats

It has been known 😋😂😂😂😨

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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 😁

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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.

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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

Cyclegirl54 profile image
Cyclegirl54

I’ll be watching!🌗

Blearyeyed profile image
Blearyeyed in reply to Cyclegirl54

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!

in reply to Blearyeyed

Or blood moon.....

Blearyeyed profile image
Blearyeyed in reply to

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

😋😂😂😂

in reply to Blearyeyed

😂😂😂

SheffieldJane profile image
SheffieldJane

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.🌚

Blearyeyed profile image
Blearyeyed in reply to SheffieldJane

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 ! 😋😘

scats profile image
scats in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to scats

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!

Yellowbluebell profile image
Yellowbluebell in reply to scats

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

scats profile image
scats in reply to Yellowbluebell

You need to get down with us kids!

Yellowbluebell profile image
Yellowbluebell in reply to scats

You are both as mad as hatters!!

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

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

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

😂😂😂😂😝

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

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

in reply to scats

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

Blearyeyed profile image
Blearyeyed in reply to

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

in reply to Blearyeyed

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

in reply to scats

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

scats profile image
scats in reply to

It' been our attitude for a while now

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

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

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Muppet!

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

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!!😋😁

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

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!!

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

😂😂😂😂

SheffieldJane profile image
SheffieldJane

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

Blearyeyed profile image
Blearyeyed in reply to SheffieldJane

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😘

SheffieldJane profile image
SheffieldJane in reply to Blearyeyed

Fomo it’s cloudy in Sheffield.

Blearyeyed profile image
Blearyeyed in reply to SheffieldJane

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

in reply to SheffieldJane

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

SheffieldJane profile image
SheffieldJane

Aww! Thanks.

HeronNS profile image
HeronNS

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!

in reply to HeronNS

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

HeronNS profile image
HeronNS in reply to

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.

in reply to HeronNS

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.

HeronNS profile image
HeronNS in reply to

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!

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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

HeronNS profile image
HeronNS in reply to Blearyeyed

Have you read Till We Have Faces?

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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.

HeronNS profile image
HeronNS in reply to Blearyeyed

Umm, Lewis Carroll?

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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

HeronNS profile image
HeronNS in reply to Blearyeyed

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.

HeronNS profile image
HeronNS in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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

HeronNS profile image
HeronNS in reply to Blearyeyed

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/

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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.

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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!!😋😂😂😂

in reply to Blearyeyed

🤣🤣🤣

in reply to HeronNS

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

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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

HeronNS profile image
HeronNS in reply to Blearyeyed

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.

Blearyeyed profile image
Blearyeyed in reply to HeronNS

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 !😋😁

HeronNS profile image
HeronNS in reply to Blearyeyed

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.

scats profile image
scats in reply to HeronNS

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.

Blearyeyed profile image
Blearyeyed in reply to scats

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

HeronNS profile image
HeronNS in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to scats

So did you see anything past your trees ??

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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.

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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

in reply to Louisepenygraig

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

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

Blearyeyed profile image
Blearyeyed in reply to

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

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

Blearyeyed profile image
Blearyeyed in reply to

Did you see anything at all in the end?

in reply to Blearyeyed

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.

Blearyeyed profile image
Blearyeyed in reply to

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

in reply to Blearyeyed

Stomp stomp...😊

Blearyeyed profile image
Blearyeyed in reply to

🌌🚀🌌💫🌟🌠🌃🎑💛💛💛

TheHud profile image
TheHud

Did the moon ;)

Blearyeyed profile image
Blearyeyed in reply to TheHud

Hoorah xxx

Yellowbluebell profile image
Yellowbluebell

We have seen the eclipse down in Sussex!!

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

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

Louisepenygraig profile image
Louisepenygraig

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

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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

Blearyeyed profile image
Blearyeyed

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

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

Flat out , do you mean busy or with Fatigue?

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

How are you after your expedition?

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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😘😘😍

Louisepenygraig profile image
Louisepenygraig in reply to Blearyeyed

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?

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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!😘😍

Blearyeyed profile image
Blearyeyed in reply to Louisepenygraig

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.

CT-5012 profile image
CT-5012

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

Blearyeyed profile image
Blearyeyed in reply to CT-5012

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

Daffodilia profile image
Daffodilia

We’re all watching the same moon

FRnina profile image
FRnina

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

Blearyeyed profile image
Blearyeyed in reply to FRnina

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

PMRpro profile image
PMRproAmbassador in reply to Blearyeyed

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 ...

FRnina profile image
FRnina

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!

Spanky2019 profile image
Spanky2019

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

Rosbud profile image
Rosbud

Was beautiful and such A lovely pink colour as well x

SlackerPMRmom profile image
SlackerPMRmom

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

You may also like...

Happy anniversary! NoT !!!!!!

GCA and I have been together for a bit over a year now.. In an effort to co- habitate amicably,...

Vote for PMRGCAuk to win £1,000

com/12days/index.php?cn=1128723&ct=health Wherever you are in the world, you can still vote so...

GCA stories - what our symptoms were like

reply saying how YOUR GCA started. The symptoms, how long each lasted if you can remember and how...

The funeral of Queen Elizabeth II

for you. Please use this thread as a place to do this to keep other posts focused on PMR and GCA....

PMRGCAuk trustee raising money!

money and awareness for PMR and GCA and also in memory of her mum who had PMR but was never...