PMRGCAuk
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Paying the Price

Having been diagnosed with PMR/GCA in early December; put on 60mg of Prednisolone and feeling rather GREAT, I had gained a false sense of security. I didn't realise the stress of the season, changes in routine, red wine, and some late nights would kick my ass! ...but they did indeed. I have spent the last 48+ hours sitting on the couch staring at the wall. I knew I needed to be careful... I read all of your posts and knew I should be proceeding cautiously, but did I? Noooooo.

Well as they say "Fool me once."

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We have all tested the limits at one point or another. I hope you are back on track soon. Just walk it. Don't try to run it. 😉

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Hi

We have all been their and done that

Pamper yourself for a few days rest and recover

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We all do this at least once, you will get over it though. It is amazing that even happy excited stress can floor us. I am impressed that you even visited the land of the living and partied - get you. You can’t hold a good woman down. Watch the staring at the wall - even that can make your eyeballs ache.

I joined in and had a couple of mugs of Gluhwein, delicious and home made, spent the rest of Christmas Day drinking water to wash it out. Shortest high in history.

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Xmas can be stressful even when surrounded by family. More drinks than normal and lots of activity. You must rest now and recharge the batteries. We are all learning by any bmistakes that we make but it is hard for us females. My daughter insisted that that I left the kitchen and sat down on Boxing day. It helped as I reduced to 5 mgs that day. Planning to rest for the next few days and ignore anything stressful.

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Good for her... good for you for listening! I reduced to 45 today.... fingers crossed.

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I'd have left the reduction until next week - it isn't a race!

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I thought about it but have a week annual leave from work so best time for me to get over any withdrawal pains. Back to work next week and probably busy. My daughter is home for the holidays. Explained the situation to her and my hubby. I hosted Xmas for family, including a 2 year old energetic granddaughter. Everyone helped and I have not done anything since the reduction. So far so good.

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Welcome to the live and learn group! You never really know how much is too much until it’s too late! Sometimes I just say I know I have to pay to play and overdo because I don’t want to act old and sick. The next day I minimize activities. This illness is challenging and we all have to measure our allocated spoons.

Feel better! Stare at a pretty picture and rest up!

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I love it "Pay to Play."

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Ohhh, Sandy, if your ears were burning (I wasn’t really talking about you, but rather thinking about you), it was because of me. I did a liitle 3 day girl’s trip to Chicago a couple of weekends ago. I thought i was doing a good job of pacing, but wow traveling takes alot of energy. You came to mind as you travel frequently and I thought, “How does Sandy do this? I’m exhausted!” Funny how we start to link our experiences with others here on the forum. Admire your ability to figure out travelling. It surprised me how much energy it took.

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So happy you were thinking of me! I have lots of travel tips. I act totally helpless when I travel! My doctor wrote a letter stating I must board early since I can’t put my (2 pounds since I only pack black and white) suitcase in overhead compartment and need assistance. It’s embarrassing when they ask if I need a wheel chair! I also get an aisle seat so I don’t turn to stone on a long flight. Walking around and the bathroom are essential.

On the trip I only do morning activities and rest after lunch. Everyone knows I need to take to my bed! PMR taught me to put myself first. Also, dinner reservations must be no later than 6! I also like eating in so I can control my food. We make it a group effort and enjoy the activity! Sometimes we all eat in pj’s so I don’t look like the odd one.

These are just a few travel aides which make life fun despite this illness. I also never taper when I travel.

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I love the idea of everyone eating in their pj's, as I practically live in mine! What a neat way to bond!

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Hey, pj’s go with the diagnosis! Since, I’m always freezing, I got polar bear style. Days of night gowns are over. TMI!

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Great tips! Love the pj dinner party! I have a feeling you are a ton of fun to travel with.

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I take getting used to before fun sets in! I must admit, I try to be the jokester rather than the chronic complainer I was when first diagnosed 6 months ago. Sadly, one of my “friends” got sick of my skevetching and ghosted me for a while.

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All great advice. I fly to Sweden 2 times a year..and was wondering how to do it all. In fact I cancelled quick 10 day trip next month...it was too short and too stressful with little ones. Will wait until Spring when we can go and stay for 8 weeks. MUST plan ahead so I can do the important things! In the meantime I'll stay put in Minnesota where it is 11 BELOW 0!!!!!! F. ugh.

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You must be in extra pain since it’s soooo cold! My body freaks with low temperatures. Pains everywhere! Are you totally layered up? Stay in until Spring?

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Everyone does it at some point - it's fine as long as you remember for next time!!!!

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Etched in my mind forever!

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After busy days (which isn't much for me) I sit with that glazed look and mouth hanging open. I know to rest next day if I want to stop being a zombie.😞😫

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Sometimes the price is hefty but chasing my 3 yr. old grandson in Central Park is not optional!

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I totally agree!

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Been there, done that: skipping along nicely thinking you’ve got a handle on it when the disease sticks it’s foot out and trips you - just to remind you it’s really in control.

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Hi mamaici1

I think most of us have been there. In fact I've got the tee shirt 😉

As I am the cook of the house hold, I told the usual crowd who come for boxing day dinner (12 of us,or son and children plus in-laws,) that I would like to meet up at a posh place instead of me cooking due to my PMR and I would pay. The answer came back. Oh dad it won't seem like Christmas, the others would prefer to come to me. Any way the came, brought their own gravy because the kids don't like mine. Also brought cheese source because of same reason. No space on the cooker for it and no help.

They got their dinner and wondered why I was dizzy and irritable.

I crashed out in bed, and they had a great dinner 😋😱😰😵😧

They don't seem to understand what PMR is even though I explain the symptoms. 😢 I hope one of them gets it one day. Normally I am a Very nice person 😲

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Ohhhhh, I am so sorry to hear this! And sorry they just don't get it... I am newley diagnosed and don't think my family really understand it either. But they at least did try to make sure I rested and we got "take away'" a few times before the day. They did really try. You must keep talking to them... keep trying to get through. They'll get it. And don't beat yourself up for being dizzy and irritable... sick is sick. It gets to you... give yourself the same grace and acceptance you've give another.

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Thanks mamaici1, I take your point, but after 3 years of PMR I have given up trying. I just go with the flow and being a male of our species I try and remain on top of it all.

Pete 🙂

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I feel much the same way - I hope the people who are too insensitive to get it suffer too.

If they had insisted like that, I would have bought in the stuff - not made it myself. And if they are that rude - then they deserved to arrive and find you in bed with no dinner on the table. Tough.

Many years ago we started a tradition in our family - we did the big Christmas thing until Christmas Eve. OH was a church choir director for the American Army. We got home about 1am on Christmas Day after Midnight Mass. Had a mince pie and a large glass of wine and opened one present each. Later, or on Boxing Day (depending on how Christmas fell), we got in the car and headed for here to ski. After we returned to the UK we went the week before Christmas. Christmas lunch was usually burger and chips up a mountain and in the evening we joined Italians having a slap up meal in a hotel - my daughter had Kaiserschmarrn for her xmas meal for years! (IT's a thick puffy Austrian pancake, google it).

No-one expects me to kill myself over a turkey for 12 people - they don't care where we are, they want us to be together and enjoying the company. Not stuffing their faces. It rarely happens though - Natalie did 4 back to back shifts as a nurse on a manic acute admissions ward with deperately ill patients and Esca had 2 days off between night shifts as a paramedic. No time to go anywhere much less here.

That is not the point of Christmas - and I do hope you are beginning to feel human again. xxxxxxxxxxx

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I suppose we all have our own cross to bare. We only have to look around to find others worse off. I feel much better for the rant.

Thanks for your input E, i'm fine and have just found out that my adrenals are starting to work again. So come the new year I shall try slowly reducing. It will be interesting to see if my body is ready 🤔

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Snap !

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Bless....i was lucky that my sister does Xmas.. .I did 2 short walks and helped chop veg but over did so stayed in bed until 1pm boxing day and let them all go on long walk and take my dog. To be honest I couldn't get off mattress on laminated floor....price of having own room...due to knee on goid leg being swollen. I texted, shouted and banged ¥on walls and floor that morning. Eventually one of nieces heard and brought me drink and snack before they went. The singing of 9 people drowned me out lol. It was hilarious 😂😂😂

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It is very sad when people have no understanding of the suffering of their elders. Grateful for my family who, for good reason I think, expect very little in the way of Christmas cooking from me. Even hubby stepped up to the plate this year, although he needed some reminders, and did a little light vacuuming, a task I've always found arduous and with PMR and a bad back nearly impossible now. Christmas this year was memorable as very high winds, the worst we remember since a category 2 hurricane a few years ago, put out power for thousands, including our house (just as I'd started to boil water for my special Christmas rice dish, I do contribute) and the house of the son who hosts the family for dinner. Fortunately he'd done most of the cooking by then, but had to cook a beef wellington on his barbecue! Fortuitously younger son had given his dad two LED emergency lanterns as Christmas gift, never expecting how useful they would be within a few hours! And I have a gigantic 4-wick candle in a tin, bought after aforementioned hurricane, which came in handy for reheating gravy and later boiling water for tea. So we picnicked by candle and lantern light and had a Christmas to remember.

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Hmmm - beef wellington on a BBQ? That smacks of skill! Though whatever - it won't have had a soggy bottom!!!!

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I don't eat meat, but I am assured that it was delicious! He even cooked some locally caught scallops especially for me. :) ❤ I really don't deserve my children. They are wonderful.

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My bet is that they are wonderful because they had you for a mom. Just sayin’

This will be a Christmas you’ll remember and talk about for years to come. Thanks for sharing it with us. Sounds like it was quite the adventure.

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I'm contemplating getting a gas BBQ big enough for a turkey for when my lot come here to visit - the smallest I could get here looks too big for my tiny oven!!!!!! We don't do turkey - really not worth it for just two - but Ian is an xmasophile!

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Now I would have joined you for the scallops - the beef would have been good but not the pastry! I wish mine were as good cooks!!!!! My sonIL does most of their cooking but I think he is a bit conservative...

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Oddly enough my children may have inherited this from their grandfather, who died before my youngest child was born, as his hobby was cooking.

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Ditto, my legs don't seem to want to work today!!!

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