PMRGCAuk
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Ash Wednesday this week

So 14th February is the start of Lent this year as well as Valentine's Day, and for me Ash Wednesday is far more significant. I was brought up Catholic but discarded religion at an early age. However every year I use the discipline of Lent for a good purpose - sometimes just something like giving up sugar, but usually I try to be more constructive e.g. one year I used the 6 weeks to learn some dressmaking techniques that made my efforts far more professional and another I read two French novels (in French) and consciously used them to improve my grammar and vocabulary.

This year, 7 months after being diagnosed with GCA and PMR and never really coming to terms with the diagnosis, I want to use Lent to try to shape my days as usefully as possible, so that I can get as much as possible from life without pointless fighting against the symptoms. One thing I've found is that I feel most 'normal' from about 5 am to about 10 am. At that point, the overwhelming fatigue takes over and I just have to get by the best I can for the rest of the day. I need to make the most of those early few hours, particularly to get some significant exercise into my daily routine - I've always been an idle so-and-so (unlike many admirable contributors to this forum who were formerly very sporty and active) and I have no history of taking part in exercise or sport. The only thing I can do is walk so I'm going to build up a daily walking routine which will be easier as the mornings get lighter. by next winter I hope to have developed an exercise programme that I can do at home as an alternative. Then I can enjoy my usual armchair pastimes of reading, knitting, jigsaw puzzles etc for the rest of the day.

These days it's said that the old idea that it takes 21 days to form a habit is a myth and that, in fact, it takes at least 66 days. I've found in the past that the 42 days of Lent is a good kickstart to maintaining good habits, so I'll see how it goes.

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I too am trying to make myself do more exercise, walking mainly. I used to walk 3 - 5 miles a day before PMR. Like you constant tiredness if the thing I am trying to deal with now. I am now sleeping 5 hrs, occasionally 6, which is a big improvement on the 3 -4 hrs I was getting.

I read a blog which helped me, by someone with something like PMR, likening it to having a gorilla coming to live in the house, and either fighting it, and trying to get it to leave, or learning to tame it. I am trying to do the latter, and I think my gorilla is sitting in the corner, growling quietly to himself. I think my husband has found it difficult having this gorilla joining us!

Bridget

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Interesting that you, just like me, have found that you're able to sleep for longer. For some time after I first started on pred, I found that I couldn't sleep for longer than 3 hours at a stretch and I got close to despair. For the last few weeks I've managed 5 or 6 hours most nights, which has made such a difference to my quality of life and now makes it feasible to do more during the day. I like the gorilla metaphor - as you say you just have to tame it.

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That all makes perfect sense, thank you for posting. Refined sugar must go for me, it actually gives me negative symptoms. Lent is a good idea. Thanks for an inspirational post! I went on a long countryside walk yesterday with family and felt less tired and frazzled at the end of the day.

Your indoor activities sound really comfy cozy and more productive than just having my nose in a book, watching a box set or chatting on here.

I also get a sparkly time very early in the morning before any drugs have been taken and I feel completely well. I get up and make a cup of tea because it is worth being conscious for. Quiet contemplation and feeling good.

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SheffieldJane please don’t demean your ‘chatting on here’! Your posts are empathetic and constructive. You cannot rate their productivity, but others can.

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I agree. And I'd say this applies to Soraya_PMR too. The kind and knowledgeable people on this forum have helped me so much through all the bewilderment caused by having two conditions I'd never heard of before.

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Thank you Soraya, I get strength from your posts.

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I was watching something the other day and they did an experiment that "showed" that willpower is not a good indicator in terms of exercise and I presume diet etc. Having a good reason that you believe in makes you much more successful. Good luck!!

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Great post! Gives me stuff to cogitate. I’ve given up lots already for PMR, I like the idea of adding new challenges instead.

I’m learning Polish, that could certainly benefit from an hour’s study a day.

Walking, enjoyed by dogs and myself, I can lengthen, change, grab the early mornings. Which knocks on to my need to reorganise my day instead of drifting.

I keep contemplating skipping as exercise/bone strengthening, anyone skip?

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As well as the exercise I want to return to fairly intensive French studies. One of the most difficult decisions I had to make when I first started feeling the symptoms was to give up my French course which I was thoroughly enjoying. Polish is far more difficult than French, so I admire you for that.

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Yes Polish is an absolute pig! Plus travelling for the lessons is difficult, I have to push myself. But it’s surely good for my grey matter, even if I never become fluent. (I never will!)

I hope you can resume your French. It’s more than just language, it’s social and cultural. These things expand us.

My Polish teacher is a darling. She’s a medical translator. From the things she says, I KNOW she has googled PMR, she knows I get stiff and can be slow in mind and body. I must ask her of Polish management of PMR. I have it in my head that they are not steroid orientated, but I might be making that up! Might gleen an interesting fact or two?

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I have chatted to a Polish woman with PMR on one of the forums - you don't want to know!!!! If we think rheumies in the UK are bad and unempathetic ...

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I feared as much!

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They aren't exactly a touchy-feely nation! WHY did you choose polish to learn? What with all the beautiful languages there are in the world!

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Son’s partner is Polish. Their intention is to have children who will be bilingual. Grandma needs to be one step ahead ;)

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Ah, yes. Are they in the UK? They'd better hope the Polish don't all head home - because persuading your children to speak the language they don't hear a lot of is not easy. Been there, done that...

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Yes, here to stay in UK.

Some have already left. Some are feeling very wobbly about things. We’ll be lost without them, but veering swiftly away from politics....

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My Irish friends in Germany spoke both German and English with their children but they were most unwilling really. And now all of them speak fairish English with a heavy German accent which is hilarious as both fathers speak English with an Irish accent... The size of the community matters a lot - mine spoke very good American but it did mean they understood there was a very large community of people speaking English - not just their parents being strange ;-)

My daughter can already not get a plumber or joiner...

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That's interesting. My father was Polish. He left because of the war. At the time there were about 200,000 Poles in London, a great uncle of mine was a heart specialist there, When I visited him he and family were courteous enough to speak English with me. But every single phone call that came in was conducted in Polish. Among other reasons my father left the UK because he was actually afraid that he would be drawn into the Polish subculture and didn't want me to grow up in that milieu. In those days, post war, many of these Poles were just waiting for their chance to return to Poland, when it shook off the Soviet yoke. He only taught me a handful of Polish words. When I tried to learn how to count in Polish I got stuck at three, the pronunciation defeating me!

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I have tried to learn Dutch as I have a Dutch branch from my brother. I find it impossible...my brain just won't accept it. Fortunately they are all bilingual and speak English when visiting us. They have accented English with the occasional yorkshire phrasing thrown in from my brother.

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We deserve to do a bit of selfish thinking when we are struck by a nasty illness but it can become negative and counterproductive. One obsessive chain of thought that I've had repeatedly since becoming ill is to blame myself for not having valued my previous good health enough and not having 'seized the day' more often to do interesting and exciting things when I was able. There's some truth in that but it's pretty pointless and unhelpful to dwell on it. As well as establishing an exercise regime, I'm wondering if a short course of CBT would help me to deal with this kind of negative and unproductive thinking.

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CBT definitely part of my arsenal for dealing with long term illness. It's never too late to try new things.

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How I agree about postings on here helping. I have just had such a good appointment with my GP, he was saying he finds there are two kinds of PMR patients, one group who respond to Pred. really well and quickly (hence the "you will be off steroids,in 2 years") and the second group (which I suspect I will fall into) do not respond that quickly, and even land up, after 2 years + being re -diagnosed, as it were, with something else.

He also confirmed, what I am fast coming to the conclusion about, that even with 7 or 8 hrs sleep a night (oh wouldn't that be pure bliss!!!) you still land up feeling tired. And bless him he is sending me for a bone density scan, (whereas Rheumy registrar was very dismissive of my question about that).

Bridget

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Wonder what he'd think of me - less than 6 hours from crippled to almost normal on 15mg. Luckily no-one ever suggested that meant i'd be off pred in 2 years!!!!!

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My rheumy told me I'd be surprised because the Pred would relieve the pain and stiffness within 24 hours. In fact it took less than 2 hours. I couldn't bear to go back to the morning routine of 20 minutes to get out of bed, then 30 minutes to struggle into clothes. I had to buy myself a worktop halogen oven because I couldn't get down to open my oven door. Still plenty of difficulties but so grateful to be rid of the worst one.

By the way Bridget I envy you your GP. He clearly knows something about your ailment unlike mine.

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Sorry I probably didnt express myself well. I think what my doctor meant was that GPs can sometimes give people with suspected PMR Prednisolone for a few months and it seems to sort things out (without even being referred to a Rheumatologist) but with others it is a case of being on Pred for much longer and things are much more complicated.

Yes I was a changed person in 18 hrs or less taking the steroids.

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What I meant was I had a very fast response - but am still on pred over 8 years later, having had PMR for 14 years. There are no rules in PMR!!!!!

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I love your positive outlook on things Marijo1951 I am sure this helps in many ways and many things. I too am a positive rather than negative person and as such maybe I push myself to the limit too often but now I do make myself sit down at mid afternoon and invariably have a power nap which revives me. Talking about Lent here's a positive, Tuesday can eat Pancakes Yum, Wednesday Ash Wednesday no more chocolate for 6 weeks aagh.

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I was just knocked sideways by being taken ill and am only now starting to work out coping strategies. I try to be positive but haven't been helped by the attitude of some people close to me who accuse me of being negative when I say I can't do something. They just don't understand how absolutely overpowering the fatigue of these conditions is. Thank goodness for this forum whose contributors certainly do understand it. I quite often find a power nap at about 3 pm helps but sometimes it goes on for too long and ends up leaving me feeling disorientated and even more woolly-headed.

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Have you tried setting an alarm?

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I do if i deliberately decide to go to sleep but sometimes I just nod off...

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I just set phone alarm for 4pm everyday just in case

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I got my doctor to prescribe gastro resistant pren, I take it about 10pm. The mornings are a little hard, I get up at 5am, but by about 10 I'm more on form. Shame really as I'm in work ;)

Taking the predn at this time seems to give me a better afternoon and early evening. I did start taking normal predn at about 2am, I was awake anyway so not a problem.

I do fall asleep when I get home, maybe 20 mins or an hour, but it's so good :)

Regardless of what you do a PMA really does help.

I laugh, internally, at the way I walk around the place in the mornings and again in the later evenings, really funny, but I don't tell the misses, PMA in action, keeps me insane!

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That's a long time for even gastro-resistant pred to take to act.

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My biggest problem is the pain in my knees.

You should see me climbing the 3 flights of stairs to my office first thing in the morning!

My knees start to feel more normal after a bit of walking and that is after I've walked to the canteen and back, all the way to the ground floor and back.

The rest of my body is fine by the time I get up, well as fine as I get. Have a little withdrawal, but I expect that. Going to bed needing the pred is a lot better than getting up needing it, well it is for me.

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I have great admiration for those who manage to go to work with either or both of these conditions. I don't know how I'd cope if I wasn't retired.

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I do have to say - I'm far from sure your knees are "just" PMR...

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I'm sure they aren't. A lot of it is returning stuff that I hag gotten used to. The predn got rid of so much stuff, now it's heading back. Smacking my knee on the floor after coming of a motorbike never helped and now I have to live with what I did when younger.

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I know that feeling!!!! Skiing injuries...

Might be worth a bit of investigation - maybe there is some fluid that removing would help the discomfort?

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Strangely, today they are a lot better, maybe something is going right for me :)

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I landed on.my right knee 25years ago as a bloke stepped in front of my bicycle on a cycle path. I couldnt kneel on it for a good 12months. O think I have a bit of bone that slips round and pressed on.my ligament. Sometimes I can fiddle with it and it moves back round. But.must say compared with the 6 weeks of bursitis in the same knee the floater is not worst problem. I have a floater in my elbow from a fall off the roof of my old vw camper van. Like you say we have to live with things we did when young (er).

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Thank you for reminding me about Lent. For some years now I've taken up things - drawing a picture a day, for example, or playing the piano. When one of my acquaintances suggested this sounded more like New Year's resolutions than giving up something for Lent I responded, without even thinking about it, that I'd deprived myself of so much throughout my life I thought this was what I needed to do! It has turned out to be a good thing. This year my resolution/Lenten task is to make sure I do some tiny bit of decluttering or organizing, every single day. Surely after six weeks of Lent I'll see some progress? And although it does seem like it will take a good measure of willpower there's a major reward at the end. Wish me luck!

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Yes, I've got a lot of drawers and cupboards to sort out and stuff to give to charity shops. A tiny bit a day over 6 weeks should mount up to quite a lot of work. I think I'll take this up as a second Lent challenge. I think New Year's Resolutions tend not to work because it's so soon after all the excitement of Christmas and still the middle of winter. Lent is nicely drawn out and coincides with Spring, the season of hope and reawakening.

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This year for New Year I told myself to draw a picture a day. I haven't managed every day, but have been pretty good, and it's remarkable that after only six weeks I feel more confident, I can even feel a style developing. Should have done this decades ago!

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I keep meaning to ask if you have kept up with your daily draw. .

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Quite well. I missed a day this weekend because I felt so horrible with my cold. Last night couldn't think what to draw then my cat settled down beside me so I drew him. Haven't done many of my tasks today yet (it's midday here) except the new one of decluttering - moved some photos from a bin onto some shelves which I finally got my son, who hasn't lived with us for years, to clear off recently (full of his old textbooks and papers, etc). However I was very distracted from my tasks this morning as we spent time with our travel agent and she has booked us on the Eurostar from Brussels to St Pancras in May at the end of our art tour in the Netherlands and Belgium. I hope we chose right. When she started trying to figure out how to get us from St Pancras to Nottingham I realized for that leg of the journey I knew what I was doing far better than she does, so we came home and I found the right sort of connection at the best price and communicated with my cousins... and all this has taken time, plus getting me on the internet far too early, before I'd done anything else!

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Sounds like you have done plenty and impressed you are still drawing.

The art tour sounds great. I am sure you will get in a routine so you can enjoy it fully.

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We first signed up last June. If I had felt then as I do now I probably would never have considered going. Hoping things improve as Spring draws nearer. At least my back is much better, touch wood.

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Akways giod to touch wood. I watched a documentary a couple of days ago about the art collection of Charles I being brought back together in england for the first time since 17th century. It was very interesting and had Dutch masters as well as other European artists on display. I thought I might go to see it but then i noticed tbe documentary was 3 yrs old so not sure if still on display. I think it was at the Victoria and Albert but i suspect they have all gone back to the private collectors and museums now.

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I sure hope so. It would be very annoying to get to Amsterdam and find that all the best works are in London! I've been trying for years to see the William Morris tapestry "The Forest" as I needlepointed three pictures derived from this (Beth Russell). The first time we had just missed, by literally hours, an exhibition of this work and others related, and it was completely inaccessible, although I begged. The second time I was told I had needed to contact the department in question (V&A) ahead of time as it was "resting"; the third time I was told it had been moved to another location which it wasn't possible for me to get to in the time I had available. Some things are not meant to be....

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That is pure bad luck!!!

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I always understand Lent to be about introducing a discipline into your life - and if that discipline is positive, so much the better.

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Yes, Lenten disciplines have led me to giving up sugar permanently in tea, coffee, on cereal, developing admirable restraint when playing addictive computer games, being quite abstemious when it comes to chocolate consumption, alcohol ditto. I think the ultimate discipline would be giving up social media but I'm not ready for that yet. :D

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Yes I agree with you, and we need to encourage each other as the weeks go by, 6 weeks is a long time!

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Taking up the theme of children being bi-lingual, our son lives in Sweden and his two teenage girls from his first marriage are completely bi-lingual and with no accent at all for English. Our son always speaks to them in English. At school lessons are in Swedish, except for French, English etc. The 5 yr old boy from second marriage is also bi-lingual, speaking Swedish at daycare and both languages at home with mum and dad. Its fascinating to hear them switch from one language to another mid-sentence. And of course, speaking English is almost obligatory anywhere in the world today!

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That is wonderful, having a perfect grasp of more than one language. My husband has two young nephews and one niece who are hopefully going to be bilingual in English and Chinese! The boys are school age now and enrolled in Chinese immersion in California, their mother is Chinese-Hawaiian. Sounds daunting to me, but kids can pick up languages so easily.

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Yes, mine would bring friends in, start a sentence to them in German and turn to me and finish in English! Such as shame we had to return to the UK - they still speak good German but lack the practice. Which is crucial of course.

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They are hilarious as toddlers - stick a load of differently languaged small children in a sand pit and they speak their own language and understand perfectly! They must absorb it through their skin - like German babies learn grammar...

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My first day in Canada, aged six, I was sent out to play with the little girl across the street. Okay, we both spoke English but with such differing accents neither of us understood each other that day. The next day and forever after no problems at all.

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Body language speaks loudest of all, they must be so attuned to non-verbal cues.

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My father hadn't spoken Polish for years. One day he talked on the phone in Polish to his cousin, hung up, and started speaking to my astonished and amused unilingual English stepmother in Polish!

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Apparently people who have English as second language understand accented English better than English spoken by an English person ( who speaks in Yorkshire accent for instance). I remember a Japanese student asking for one of my office mates and in my best yorkshire English I tried to explain 3plus times that this person would be in later in the afternoon. She could not understand me at all. I ask my other roommate who was German to come and explain this as she had studied Japanese and lived for 2 years in Japan. She approached the Japanese student and in thick German accent told her the answer in English. The student nodded said thank you and left. I basically stood open mouthed.

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That makes no sense. Why would German accent be more comprehensible than Yorkshire accent? Although I do confess to having the advantage of exposure to much Yorkshire television....

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It was several years later that I heard on the radio that those who speak English as second language understand each other better than an English. Weird.

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There are a lot of similarities in how they pronounce things "wrong". Mind you - David and I are sure that a lot of scientific problems arise due to English being the language of science and they don't get the nuances...

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I do know that the "th" sound, for example, is very difficult - as difficult for some non-anglophones as I suppose the "click" in some African languages is to us. I'm reliably told that I spoke Swahili as a very small child, and although I don't remember that I distinctly remember making a clicking sound as part of the many random sounds that children make. When last year in choir we were being taught how to make the "click" in an Africa song (basically we were just closely approximating the African sound) I thought the method was wrong and tried to remember what I used to be able to do. ;)

And it's true that different languages convey very different concepts. I have a friend who spent her formative years in Japan and she likes from time to time to explain to us what a certain concept is, something the Japanese might express with a single word but requires a paragraph in English. I think German also can express a complex idea with one word? This is one reason why it's so tragic that hundreds of human languages are going extinct because with them we lose unique world views.

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You don't really understand a nation until you speak its language at least a bit.

But Japanese - well yes!

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Best of luck. Sounds like a win win goal. You might add a prayer or two to start the day. May we all have a Blessed Ash Wednesday as we continue on our journey.

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I agree with so much of your message. Lent is a good time to take stock I believe. I have been to church this morning and received the ashes on my forehead, just a reminder of our mortality! And as you say make the most of every day, maybe taking on something to help ourself or others.

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First day and I've had a reasonable start - I cleared a couple of saucepans that I never use and had a longish walk early, leaving the saucepans at a charity shop that was just opening. Mind you, I found the shop had two 1000 piece jigsaw puzzles that had never been opened and given my jigsaw addiction and the low prices, I couldn't resist. I'll have to remind myself that clearing unwanted stuff is not the green light for buying more potential clutter. After lunch I hope to tackle a French exercise on TV5 World.

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I am just going upstairs to do some shredding which has been sitting around for months, and this afternoon after a power nap, 1/2 hour, actually write a letter to a friend recently bereaved.

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Good Luck Walking is a great weight bearing endeavor. You can start slow and gradually increase speed and duration when you feel stronger.

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