Mind over matter... a 2 edged sword

[Mai45]

There’s nothing in this post you don’t all already know, and PMRPro and DorsetLady et al haven’t read, written and preached scores of time already.

Both last autumn and earlier this year I was involved for weeks in planning/rehearsing a play, once in the cast, once directing. Both plays then ran for a week (only am dram, but a week’s run is still draining). Loved both, then both times spent a week to 10 days immediately afterwards mainly asleep, and when occasionally awake impersonating a wrung out dishcloth. (Great impersonation by the way, considerably better than my acting)

10 days ago I took a longish train journey to meet a friend, then the 2 of us took a silly o’clock flight to Prague. Walked and walked and walked for 4 days, then reversed the travel process to get home. My grandsons had broken up from school so now into holiday cover, then kicked off (as you do) by turning out my garage because I couldn’t do it entirely on my own and needed their muscle. Forgot there was a work party scheduled at our little theatre on Saturday. Couldn’t face painting walls, but took on cleaning tasks.

2 years in from the onset of PMR and 20 months from formal diagnosis and Pred, I’m now down to 4mgm. I had begun to think I might be a fraud because the past 2-3 months had been reasonably smooth. But you guessed it... slept most of yesterday and today, and my impeccable impersonation of a wet rag is back centre stage.

Do I regret it? Yes and no. I’m well aware that compared to many on this board I’ve been lucky, and that I knew perfectly well that I was overdoing it. I reckoned both plays - and the beautiful city of Prague - were worth it but I also now appreciate that mind over matter can be risky, and there will always be payback.

I’ve read so much on here about ‘pacing’. Think I’d better take it seriously for a while...

[SheffieldJane]

Lovely inspiring story!

I am keen not to make a habit of being an invalid too. Well done!

[Mai45 in reply to SheffieldJane]

You’re very kind Jane. I didn’t think it was inspiring: I thought I was just a bit of a numpty!

[SheffieldJane in reply to Mai45]

I have been sleeping on and off since getting back from New York. It was worth it. Very vivid dreams, my subconscious has a lot to process.

[GOOD_GRIEF in reply to SheffieldJane]

You were in New York ans didn't come to see me?

I'm crushed....

[SheffieldJane in reply to GOOD_GRIEF]

Next time I promise! Only had 3 days and was mainly downtown. I am guessing you’re an uptown girl. Amazing place! Returning most def.!

[GOOD_GRIEF in reply to SheffieldJane]

My office is downtown in the Financial District. And I live across the harbor on Staten Island.

Hope you enjoyed your visit.

[SheffieldJane in reply to GOOD_GRIEF]

It was an amazing visit and we hardly scraped the surface. We saw the Broadway show “ Beautiful” and I have never experienced such live talent. You are lucky!

[Hidden in reply to Mai45]

Not numpty at all!!!!

[DorsetLady PMRGCAuk volunteer]

Yes the pacing thing has come back to haunt me since my knee op two weeks ago!

Note to self - Talk about “physician health thyself”!🧐😳

[Mai45 in reply to DorsetLady]

Sorry, DL. Hope you feel more yourself soon - after all, yours is not self-inflicted!

[DorsetLady PMRGCAuk volunteer in reply to Mai45]

See answer to Sueshayes below.

[Telian in reply to DorsetLady]

I hate those post op blues too. I hope yours will soon pass, I'm sure they will with your stamina!

[DorsetLady PMRGCAuk volunteer in reply to Telian]

See answer to Sueshayes below

[Suedeshayes in reply to DorsetLady]

Knee replacement?

[DorsetLady PMRGCAuk volunteer in reply to Suedeshayes]

Yes, 2 weeks ago yesterday! Been to physio this morning - he’s please with it! Had me riding a static bike - ouch! Told me I can go back to Pilates.

Did me good though, walked farther than I have to date, so that was a confidence booster.

[Ruadh in reply to DorsetLady]

WOW - riding a static bike so soon. Terrif. Heck, you'll be climbing trees next... Take care, spell yourself -

[DorsetLady PMRGCAuk volunteer in reply to Ruadh]

Don’t think the trees would like it much!

[Telian in reply to DorsetLady]

Excellent, well done you!

[DorsetLady PMRGCAuk volunteer in reply to Telian]

💐

[Suedeshayes in reply to DorsetLady]

Hi, knee replacements today are excellent, and, put in the exercise, and they will work well. I had one done and then the other 12 weeks later, which on reflection, was a bit of a tall order!! I now walk a couple of miles three times a week, golf and go to a Pilates class, which will start again in September. I’m not fond of kneeling. Would be good to hear how you get on. Bonne courage. X

[DorsetLady PMRGCAuk volunteer in reply to Suedeshayes]

Thanks, will keep you up to speed with things.

I’m hoping that my other one won’t need (sorry!) anything done too soon. I have arthritis in it as well as that hip, but I think it’s been worse because of the very bad left one! So when that’s good it will hopefully take pressure off knee and hip on right side.

My GP let it go on too long really before referral trying to “manage” it himself! Plus off course, high doses of Pred during the deterioration process masked most of the pain!

If there is a next time around I shall be pushing for a referral to the MSK clinic sharpish!

Keep enjoying your new knees!

[Telian in reply to Suedeshayes]

That's truly inspirational for DL eh DL?

[GOOD_GRIEF]

Well, I call YIPPEEEE!!!!!

I'll bet that back when you started this PMR journey, you'd never believe that you'd come so far so fast...

Now, it's time to take a good long rest so that you're in shape for your next adventure...whatever that turns out to be...

[Mai45 in reply to GOOD_GRIEF]

Dead right, Good Grief. 2 years ago, after the onset but before any formal diagnosis, I couldn’t even turn over in bed and was genuinely scared that I was going to be stuck like that the rest of my life.

[GOOD_GRIEF in reply to Mai45]

I remember that feeling very clearly. I had to hook my toe under a shelf to be able to sit up...rock back and forth to gain enough momentum to stand up...phone my husband from the porch to come and open the door because I couldn't turn the knob...

[piglette in reply to GOOD_GRIEF]

What about getting off the loo, what a nightmare? I used to feel that I would be found in the shape of a skeleton!

[Mai45 in reply to piglette]

It wasn’t just me then!

[PMRpro Ambassador in reply to piglette]

Short arm syndrome was my problem - couldn't reach...

[Telian]

I think you've been amazing, whatever you think of yourself.

[Mai45 in reply to Telian]

That’s very kind, but I think we’re all the same, on a learning curve. Thank goodness for this site, because without it I’d still be clutching the by now very crumpled NHS fact sheet on PMR, wondering what on earth was happening to me

[Angiejnz]

There's time for pacing and time for living a gloriously filled life as there is time for recovery afterwards. I'm about to start week 2 of a 3 week run, started rehearsals in Feb so long lead in. Got to be done!!!

[Mai45 in reply to Angiejnz]

Brilliant! Break a leg! Hope it’s all going well. Straight theatre or musical? I’m taking a break this summer and autumn but have my eye on a part in the spring production with auditions in the new year.

[Telian in reply to Mai45]

Well you two (Angiejnz) never cease to amaze me - I listen to your exchanges of 'theatre land' and wonder what are we missing and how on earth do you do it! Then again if it's something you seem to have always done can understand giving it up isn't an option...good luck with the productions - would love to see you both in action. I'm going to aquarobics for the first time tonight - that's my limit to 'entertaining' an audience, it will be a comedy!

[Angiejnz in reply to Telian]

I struggle to rise from my bed and do anything during the day, conserving my teaspoons and pretending I don't ache. Once the music starts, pain can be mostly ignored. I'm really glad I'm doing it for my sanity and the consequences will be faced when it's done. Then you'll probably hear me whinging from down here 🗣️🗣️🗣️

[Telian in reply to Angiejnz]

Lovely....we'll be here to lend an ear, I'm a poet and didn't know it!, whatever noises come from down your way....

[Angiejnz in reply to Mai45]

Les miserables

[Hidden in reply to Angiejnz]

Yes... but we all KNOW you are a CRAZY person, my sister from another Mother!

Hahahahahahahaha.

[Hidden]

Wow! Impressive!

About possibly regretting it, don't! It sounds like you had some amazing experiences... So, you feel like a "wet dishrag," big deal! This too shall pass. You gotta live life... Good on you!

[Louisepenygraig]

I've just come back from a brilliant 10 days in Italy. I had two rest days but basically overdid things the rest of the time. I'm fairly knocked out but not quite a wet rag but even if I was it was worth it. It is difficult getting the balance though isn't it.

[Mai45 in reply to Louisepenygraig]

Glad you had a great time. I’ve never been to Italy... next year?

[Louisepenygraig in reply to Mai45]

Italy was lovely, second time I've been but the first was in 1973! I think the warm dry climate helped!

[HeronNS in reply to Louisepenygraig]

We were in Italy in 1973 too - travelling on Eurail passes with relevant chapters of Europe on $5 and $10 a day tucked in our suitcase. Those were the days!

[Louisepenygraig in reply to HeronNS]

We were in an Austin minivan, camping. I was 3 months pregnant and suffering from morning sickness! I can't remember whether I went up the tower at Pisa or not but I can remember that I sat on the pavement at the bottom and threw up in the gutter! As you say, those were the days! I'm sure there's still more adventures to come, just of a gentler more comfortable sort!

[HeronNS in reply to Louisepenygraig]

We were rather footloose fancy free graduates, my husband doing research for his PhD and me with a new library degree. We often slept on the train, sometimes choosing our next destination with the length of night in mind. I remember one night, don't remember what country we were in but it might have been after we left Italy and headed up to the Netherlands, there were six of us in the coach, sleeping like sardines, head of one person alternating with the feet of another. And somehow we survived and for many years 1973 was the highlight of my life!

[bunnymom in reply to Louisepenygraig]

The balance is always tricky as you don't know how many spoons you are starting with 🥄🥄🥄

[Mai45 in reply to bunnymom]

So true!

Perhaps we could ask John Lewis to design a spoon only cutlery collection with discount for those with PMR?

[Mike1964]

Lol, Touche! hopefully we all live and learn but sometimes the spice of live is just worth living for!

[artfingers]

Yes, I recognize the "wet rag" syndrome. I'm in Maine hiking and day one after driving straight 18 hours from Michigan by myself, I was invited to a "hike". Foolish me I said yes and spent 6 hours that day climbing a steep, difficult mountain called Hedgehog... at one point I felt as if my heart would explode, my head was pounding and it seemed as if I had the flu from low blood sugar and whatever else I was doing to myself. At the top I lay flat on my back missing the view and wondered how the hey I was going to get down again. I will never climb that mountain again till PMR goes away if it ever does. That said, I was grateful to climb a much smaller one easily today so that was encouraging. Knowing our limits I guess is key. But I sure do know what pushing myself meant because there was no way anyone could get up there to get me down... the cousins that were with me were a godsend lending a hand to get me up huge granite boulders and walking with my slow self. Lordy!

[Mai45 in reply to artfingers]

Ouch! Huge respect for achieving that. Welcome to the WRS (wet rag society)

Motto: it seemed like a good idea at the time...

[HeronNS in reply to Mai45]

Love it.