Yesterday, I had the PLEASURE of meeting up (face to face) with "SheffieldJane," at St. Pancras International, in London!
She happened to be in London with her OH, and we had made plans to meet for a bit of Christmas shopping and lunch.
We managed to get in a lovely morning coffee, chat, chat, chat. A tasty lunch at Le Pain Quotidien, chat, chat, chat. A bit of wondering and window shopping, chat, chat, chat. And finished off the afternoon with a hot & spicy, Chai Tea, and a wind down chat, chat, chat.
What a wonderful day it was!
If your ears were burning, it's because we talked about this site, it's amazing members and how much we have both learned and benefitted from the "experts," the "newbies," and the "good ol" on-line everyday members, we love so much! We both agreed, we would have been lost without this site and what a godsend it truly has been to us!
The one thing I forgot to do was to take the obligatory "selfie," of Jane and I with the glorious back-drop of St. P! I was so busy "bending her ear," I totally forgot to document our meet up!
Ahhhhh, well... next time!
PS - After 3 days wandering around Vienna and then a day trip to London... I'm knackered! Today is a "couch day," with never ending cups of tea!
So pleased that you both had such a lovely time,l would love to have been there too to meet you lovely ladies who’ s posts have been so helpful .l hope you are both giving yourselves well earned TLC today,and the memories of your day together are proving to be a wonderful tonic.
Ha ha ha !!! - I can imagine us all talking at once .... but I certainly do intend for that to happen in the future when we can get time away from our wee orchard and gardens which are wonderful but very demanding - we are just now coming into our harvest season and the trees are loaded with fruit. We are not a 'commercial' enterprise but a quite large domestic orchard and as a consequence need to do the work involved to keep it flourishing. As all our fruit is herbicide and pesticide 'free' there is a lot of hand weeding, digging, pulling as well as picking and pruning not to mention MORE planting. We love it but now we having bantams as well we feel a wee bit 'enthralled'. Still we will be having a visit to NZ next year and maybe the following one (in our Winter) we might get back to the UK - my partner is originally from Scotland and we 'miss' that too- and THEN we will have EVEN MORE to 'blether' about !
Ruth is from Glasgow (originally) and came with her family to Australia as a child - and so has no accent - in fact I think she has adopted (after 26yrs) MY 'KIWI sounding voice (oh dear) !! Her mother was from Govan and her father who became an orphan when his mother was killed during the bombing of the Clyde was fostered in real DIckensian (nightmare) fashion to various families who wanted 'child labour' - ending up for many tough childhood years on Tiree - a place which we have yet to visit. In past trips we have stayed with both her uncles - one lives in Biggar and the other in Dunoon and we travelled all over - I thought Scotland was quite 'enchanting'...
o good for the both of you, part of the "family " it must be very healing those warm encounters. I wanted to add a pic from the Christmas tree in saint Pancras, full of fluffy disney figures but don't know how to do that. you have been building precious memories.
It was a pastel coloured modern effort that I found a bit disappointing, sponsored by Tiffany. I love real trees and traditional decorations. It is very healing getting together. I am still buoyed up by meeting M.
At least you were exhausted for a good reason. At home I have always the real tree, but in the beautiful old building saint Pancras see it more as a decoration instead a christmastree. But in the year I was there with my daughter, the tree was surrounded by military with real guns, so confusing.
That must have been bizzare! My favourite was at Caledonian station in Edinburgh. A massive real one with a train set running round it and loads of donated toys for disadvantaged children. I walked through it on my way home from school. Magical.
How wonderful the two of you got to connect in such a beautiful setting. Sounds divine! I echo your sentiments about the folks on this forum, and although I have never yet met anyone in person (still holding out hope for tea with someone local), I feel like I have known and cared about you all for some time now. I'm reminded from your post the importance of human connection. Happy holidays!
Thank you PMRCanada, It was the perfect setting. I'm sure you will soon have your own group of Canadian PMR/GCA buddies... the word will get out that you are there and "they will come." Happy Holiday's to YOU! xxx
Thanks so much Daisychain. I do hope folks find me approachable and are not scared off by my willingness to discuss topics such as marijuana and healing, sexuality and intimacy, etc. Never any judgement here, and comments always welcome.
Sounds like a lovely day. If more people had known in advance, it could have turned into one of those "flash mob" moments so many people wishing they were there 😂🤣😂🤣😂 imagine a group us trying to dance en masse in that station. The mind boggles 😋 Glad you had a lovely time and a nice rest today to recover
*laughing* Yes, I'm imagining a "flash mob," where a bunch of very "mature" people are moving around, (I guess it could be construed as dancing, maybe) very slowly and stiffly, while wincing with every movement...
It's in the eye of the beholder - no one else sees us like that but I do know what you mean - we all hate our photos. I've respected your wishes re the one I took at the AGM but one day - one day Thomas!
SJ had a hypothesis/theory... as she too wondered why/how I am as "good" as I am. She wonders (and now I do too), if my having PMR (without knowing it) for 2+ years, prior to my GCA diagnosis, I might be on the tail end of it, as this would be my 3+ years. And if GCA doesn't last as long as PMR, I could be on the tail end of that too. (?)
I really have no idea and it was just something we talked about, but although I still have good days and bad days, I DO NOT have the debilitating fatigue, crippling aches and stiffness, and the hip, neck, shoulder, thigh pain that I used to have... Yes, I get tired, and feel achy, but not anything like it was 4-5 months ago...
I know I wasn’t asked for my view but here it is anyway. Perhaps a glass half full person put up and shut up for a long time before diagnosis? I still would not provoke the dragon for some time yet though. 🐉x
You're doing very well and coming out of it gracefully! I truly hope you are one that treatment works 'text book style' for. For me I've had GCA 4 1/2 years and is pretty stable now but can't get lower than 4.5mg at the moment. My PMR seemed to be inactive after 2+ years but I have some symptoms that are reminiscent since my flare earlier this year - my body tells me what I can and can't do and we're pals at the moment! Like you I am not a glass half empty person and if you are getting through it, as you seem to be, then all good just don't overdo it while it might still be lurking in the wings.
Yes... it might be wishful thinking, Telian. I am on 17.5 now but leery about the lower mg as I have seen so many of you struggle and yo yo up and down... I may be lucky, but then again maybe not. It is what is. I shall deal with whatever life throws my way, I suppose!
France was amazing as usual. I did teeter out in the afternoons and we'd go back to the hotel for a nap, but all in all it was great! Thanks for asking!
I'd like to 'agree' with this perspective - and had kind of figured - or hoped for something similar myself - as I reckon I must have had PMR for maybe 6 months - year prior to dx and then 'got' the GCA one just a few weeks after that and now getting close to the 'official' 2 year mark. But still on 12 mg and this is the lowest dose I have got to and I am hesitant to reduce again yet as still feel on the 'cusp' ... But I do like SJ's 'hypothesis' it certainly encourages some optimism ....
Sounds like a fabulous day. You are so right about this site - it's a life-saver on this lonely pmr road. Feels like we all know each other. No matter what the query, there's a guaranteed friendly, uplifting reply. Enjoy your couch day. We all need them.
It was a wonderful day. I completely forgot I was ill. Today, I can hardly walk, but is was worth it! 💗🎄Bad mood completely gone.5 hours of Melissa cures everything.
Apparently my grandsons are only allowed some milk and no juice to drink, just water, so that is no Gluten, no sugar, reduced dairy/ meat and carb and water to drink. 😕
Ignore the parents just give the grandies what YOU think they should have - otherwise we will be remembered (or maybe not at all) as real 'meanies' with no 'choc beanies' !! OK maybe not 'all the time' but surely 'SOMETIMES' - after all what do most ADULTS do !!??
Ha ha !! thanks SJ - of course I try not to 'poison' my grandies but I don't get to see them very often and try to make the most of it when I do. Fortunately the parents are not too fanatical and accept a certain volume of 'treats' are OK and all the children are pretty healthy generally. Similarly, I have just written another post in reply to Daisychain's one about cholesterol etc and similarly reveal there some resistance I have to merely regarding food as 'medicine'. Yes I know everything we put into our bodies has an impact - or can - the elements of which are of course still debatable and clearly revised often - but then I think there is also just 'living' (without huge excess of course) and actually 'enjoying' what we eat. I feel there is now a tendency to over-determine our experience and pleasure with a self consciousness which might even be 'harmful' or even anxiety promoting in the longer term although this is not an argument to promote ignorance or 'gluttony'. I am for example just 'waiting' for the large green apricots in our orchard to change colour ... they are delicious (pesticide/herbicide free) fruit and will no doubt raise my carb intake - but I will wear that and no doubt munch many directly from the trees as I pick them ....
Just be sensible with them, there little tummies aren't used to it now! But definitely a treat has to come in somewhere......When do they land? Mine the 12th.
The 7th. I wouldn’t mind but the parents aren’t consistent. Only I have to stick with rules. I have seen the photos with fruit ice lollies.
What with all her in-laws descending upon me for Christmas Day, and the tension with their extreme reaction to the staying in Australia news. It is beginning to take on the quality of a nightmare. It’s a good job that I adore my grandsons. There is going to be a lot of gritted teeth. ( mine)
Mmm, mmm and mmm again - it might not be as bad as you think! It is what it is though - I'd just labour the point and ask all the time what they can and can't have. We had the same when they first moved out there, making out everything had to be just so - meal times were a nightmare - I swear it was for our benefit but I wasn't impressed - yet things went by the board and they couldn't see it!!
I don't know about the 'Australia news' - is that your daughter and family deciding to stay permanently - they must be there temporarily? If so then if it wasn't for the little 'uns I'd cheerfully leave them to it! I do understand how the in-laws will be feeling though and so do you. Lets hope they can leave it be for the day - I understand your trepidation.....enjoy your time with your grandsons - I know you will - and you're going out at Easter if I recall?
Thanks for the sanity. Dare I say that Australia is even more food faddy than the U.K.?
Yes they love the life and are staying for the foreseeable. Once I had withdrawn the knife from my heart we started planning 3 month visits when my OH retires. My daughter wants us to come there to live, on something called an aged parents visa. Apparently you can get Medicare and buy property but you are never a full citizen.
We’ll see. I am a European at heart and rather like my country when it’s not behaving inexplicably. His parents are stuck at the devastated part, and I totally empathise.
Thank you and yes you can because they are! Takes a bit of getting used to but I admire most, not all of it.....
You can emigrate if you've got all family out there - something to look into at your leisure at this point and will help you get through this 'mourning' period. I do feel for his parents though.
Wow 3 monthly visits, that's amazing, you'll meet yourself coming back! Health care is the biggie but not insurmountable, depending on your personal circumstances, and something we would have loved to do but we have 2 other sons here and perhaps might not have qualified. I would just go with your instinct - life is just too short.
Why the gluten free? That might be a problem in the future if they aren't actually celiac. As for the other things, I'd have been that strict as a parent and if I had grandchildren would be more than willing to let my treats for the children have nothing to do with food. Books, art, games, nature rambles, gardening....
We made our own popsicles (ice lollies?) out of juice or pureed bananas often with carob to make them like chocolate. My daughter showed a sensitivity to wheat so we got very ingenious with our cooking so she never felt left out, and consequently we all ate more healthfully. This isn't really a lemon you've been handed, but even if it is, you can make lemonade! They'll love you because you are their grannie and remember you because you're fun. I don't remember a single thing I was given to eat as a grandchild, but I remember my grandmother showing how she fed the birds outside her kitchen window, and another older family member helping me learn how to draw better.
That is good advice Heron. Part of the pain is having Autism Spectrum and Attention Deficit disorder mentioned when a perfect little boy whom I looked after for 2 years while my daughter worked, seems suddenly being pathologised. Not that I’ve said that. But what has happened in 18 months?
I wish she’d shared her worries. Yes he’s sensitive and likes routine and transitions are hard, but he’s also the brightest little button in the world.
I don't know your grandchildren, but I've observed the same phenomenon occurring when perfectly normal, active children go to pre-school or "big" school Suddenly they're supposed to be docile, tractable, fairly sedentary. And what they really need is the chance to run and jump and climb and play outside and use tactile objects - throw balls, build with wooden blocks, play with sand and mud and water, make noise. So they can't stop doing all those things which are perfectly normal human activities, and are labelled negatively and even given medications.
In my late teens I visited an aunt and uncle whom I hadn't known well before. They had four children, all younger than me, and I remember sitting with my aunt having tea (I was treated as a full adult, I think I was 18) while the children played on monkey bars in the garden. I'm not particularly athletic myself, and hated gym and games, but I noticed how my aunt let her children do whatever they wanted but was there with them, observing, even while she chatted with me. That was a good model for me later when I had children of my own. It was okay to let children explore and take risks but the adult's responsibility was to to make sure no real harm occurred without curtailing those normal impulses.
Hope you don't mind me butting in here Jane. My youngest granddaughter used to get hyper if she had too many sugary drinks - I mean off the wall - and sometimes it is a needs must for the parents to do what they have to do. But she has survived and her ability to study unaffected. As she got older she learned her limitations, as did her older sister for different reasons to do with food. Totally different to when they were here and something we have to accept. You've noticed the stark difference but it's not the end of the world and perhaps let your daughter know that but you still trust her to know best. Things have changed but it is no ones fault and I'm sure it will be alright. As Heron suggests there are many other ways of spoiling our grandchildren.
You are both full of sense. I must remind myself that love is not possessive and much as we’d like to, we can’t and shouldn’t wrap our children in cotton wool. They need to learn to integrate with the world. It must have worked with my own daughters, both fiercely independent and creating villages on the other side of the world. This grandma business is a bit of a minefield. Thanks for your thoughts ladies.
There was an article in the Guardian (I think) this week about how it is over-diagnosed in the USA compared to the UK. Part is said to be because children born towards the August end of the school year are being diagnosed with ADHD when all it is that they are immature compared with those born in September. No 4 year old belongs in school - all these problems are far less common in mainland Europe where they go to kindergarten at 3 and Big School at 6 or even 7 years old. By that time they are happy to sit for longer and be taught - as opposed to learning through activity.
All children DO like some routine - and especially when their world has been ripped apart, as his has, when they are too young to understand it. It is a comfort blanket, albeit one they can't chew.
And the other bit? Too many parents believe too much rubbish they hear and see on social media about someone's perfect little genius. And expect to be able to play with their phone while little Jimmy is sitting there being ignored. If you can't be bothered to parent - don't become one. (PS, not saying your daughter is in that group btw).
That is very perceptive of you PMRPro and my take on the whole situation. My eldested daughter was born in August and went to school at 4 years and 1 month. At her first parents evening I was told that she was a flipperty gibbet, I cried all the way home. Interestingly she is a child and family psychologist now and she delayed her child joining school until he was almost six. She didn’t think he was ready. He excels at everything now, a very grounded, confident 10 year old.
Mine were 6+ and nearly 6 before going to school in Germany. Did them no harm. Esca went a year early because we knew we would be returning to Scotland and wouldn't have been at school at all. But there were twins in her class who were a year older because they simply hadn't been ready at the usual age.
Be there for them. That is far more important, I have never given my grandchildren choccy and stuff without parental permission - and it wasn't a problem for me because my MIL really undermined dietary stuff. As it happened, my granddaughter is very dairy intolerant and at later stages it nearly killed her. Had we all been harder sooner life would have been less exciting (for that, read awful)
Again I realise that things have really changed since I looked after my grandson. I am venting here rather than with them. It is very difficult to let go. Maybe I find transitions hard too.
Oh my gosh . I am insane with envy. I would have done anything to be there. So so happy for you both. You would have been in such harmony and what a tonic. I love you both and this post made me so happy. Love and joy. Linda xxxxxxxx
Second time of posting!! My health unlocked seems a bit iffy today!
Wow ! How wonderful that you were both able to meet up and have such a fab day!! Would loved to have been there although don't know if I would have lasted the course as well as you two ladies!!
Must have a get together for all interested folk ( sorry friends across the pond and far away places) that would be great and lovely to put a face and voice to a name.
So glad you met and had a wonderful time, it has done both your hearts good. I have a group of friends from all over uk , we began our friendship on a cruise website. 9 years down we meet once a year and have become great friends. Hubby and I have only ever done 2 cruises but continue our friendships. I find it amazing how you can " connect" with people like this!!
I can imagine the both of you , chat chat chatting, not really taking in your surroundings, bet the time went like wildfire!! Good on you both!!👍👍👍👍
As for the schooling at 4 , I am a retired infant/ special needs teacher. My son started school at 4 years 2 months, I was always annoyed at why we start so young, the pre school/ kindergarten experience is so valuable. Many studies have shown that in Scandinavia where children are almost 7 when formal education begins, they also have excellent pre school provision, which I think is free, when tested at 11, they are equal or not better than our 11 year olds who started at 4!!! Rant over!! Lol 👍👍😉😉😉
It is exactly the same in Germany (and other German-speaking regions) where my children first went to school, although pre-school provision isn't free it is quite reasonably priced. Even better I think is that they are also older when they leave school for Uni - having done a very broad-based range of subjects right up to their school leaving certificate which leaves them a much wider range of degree options at an age where they might have some idea what they really want to do. Not to mention at least one foreign language, often more, English starting at early primary level. But that is my bee in my bonnet!
Ah ,but not all kids want to go to uni, another bee in my bonnet. As a nation we have badly let these kids down. Raising of school leaving age to18 they have now to be in some form of training or education. Apprenticeships, very thin on the ground, so what next!!! It's a mess and don't get me started on Academy's and free schools!! 😂😂😂😂
Oh absolutely - apprenticeships are also very widely used here. I believe there is no difference between someone who went to uni, did a degree that wasn't really any use and then finally found a job they learnt about on the job and the person who went into a job and did day release to get the piece of paper. In fact - I think the second is far preferable having done both. Daughter No 2 did a medical science degree, couldn't find a decent job and decided to become a paramedic. Where she worked and did block release training. Now she is doing a Masters in her spare time, nearly finished, and in January will start training as an Advanced Care Practitioner - doing day release to get a Masters in ACP. It is hard work but they are trained for something at the end. I meant more the vocational degrees - who really knows at 14 they want to do medicine? There also seems to be a whole range of jobs here that don't exist in the UK, especially for girls!
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Follow up appointment
PMRGCAuk Members' Day & AGM - Coffee Anyone? 
Up the creek without a paddle...
Follow up with the doctor. Markers down but still in pain 
