This disease is absolutely ridiculous!

[testadura]

I woke up feeling great this morning, a little trepidatious about my planned reduction of prednisone next week, but ready to tackle a cleaning task I've been putting off for weeks (months.) Well, after vacuuming one flight of stairs, I'm done! Less than five minutes of housework, and I'm on the couch resting my fatigued arms.

Being the stubborn thing that I am, I'm going to push forward, but, only after a cup of tea, and just a little more couch time! I'll probably feel it tomorrow and the next week.

[PMRpro Ambassador]

Be careful - if you force through you may find the effects last longer than just next week. Your muscles are intolerant of acute exercise and will develop delayed onset muscle soreness as usual - but without having told you in advance you are doing more than they can cope with. And the tiny tears in the muscles that cause the pain won't heal as normal. If you are determined to do this project then at least consider postponing the reduction.

[testadura in reply to PMRpro]

Good idea! I'm stopping at one room...lots of breaks, but it's amazing how quickly I fatigue.

[Hidden]

Ohhhhh, I can so relate to this post!!! They both are "absolutely ridiculous" diseases."

I think you hit on one of my biggest complaints! The inability to do ANYTHING, without being totally, endlessly wiped out! The simplest things, i.e. vacuuming a flight of stairs, changing the sheets makes you feel so defeated, like you've tried to conquer an unconquerable task!!! It's so frustrating and derailed.

Good luck next week with your taper down... fingers crossed!

[Soraya_PMR in reply to Hidden]

I just changed the linen on my king size bed. Sheet, 2 single quilt covers, 6 pillow cases, all in one slow attempt. Usually have to do half at a time. This after 11 months on pred, now down to 10mg.

GO ME!!!!!

[Hidden in reply to Soraya_PMR]

GO YOU GIRL!!!

[yogabonnie in reply to Soraya_PMR]

bravo! sheets have been changed MUCH less often.... i.e. . oh, is it a holiday? change the sheets. haha EVERYTHING is done at a slower speed. Perhaps there is a good thing in all this! I get to lie on the couch and read these wonderful posts! However yes life goes on. and there are PILES of new snow outside waiting to be shoveled slowly slowly slowly. But the cold air feels SO good!

[Inger62 in reply to yogabonnie]

I think it’s called mindfullness- supposed to be good for your mental health: clean white snow, fresh clean air, clean fresh bedlinen.. ❄️ Enjoy!

[Rimmy in reply to Soraya_PMR]

Ha ha ha Soraya and Melissa - my partner LOVES pillows - even just as bed 'decorations' so try 10 PILLOWS .... and their over-sized cases stuffed into very FAT pillows - as well as two doonas - not to mention those tight under-sheets and blankets - and then 'after' placing all the attractive ones on the top - by THAT time I wreck the entire effect by collapsing on the bed ... Luckily she does it MOST of the time ....

[PMRpro Ambassador in reply to Rimmy]

I don't see the point of all those pillows - you have to remove them all before bed and put them all back next morning...

[Rimmy in reply to PMRpro]

Yes - tell me about it - but it's comfy when you can get into it ... !!!

[Soraya_PMR in reply to Rimmy]

I’d probably fall over all those pillows and break my neck.

Had to google ‘doona’, not heard that term before.

[Inger62 in reply to PMRpro]

Have to agree with PRO. It’s all against mindfullness and simple living.. Also remember that beds should not be made every day- need lots of air between the sheets!

[Soraya_PMR in reply to Inger62]

Does anyone really make a bed nowadays? Nothing much more than a quick shake of the duvet.

I recall my early days of nursing: every bed stripped, top sheet to bottom, ‘hospital corners’, fresh top sheet EVERY day, seams the correct way round, top sheet turn-downs all matching (the length of your forearm) Pillow case openings away from the door. Pleats in every blanket to give the feet room. All before Matron did her morning round. And woe betide you if the bed wasn’t turned back to ‘welcome’ an admission!

[PMRpro Ambassador in reply to Soraya_PMR]

I just throw the duvets back to leave the bed free to air and shake out the pillows. I do tidy them if someone may come to work on something. I don't go to the lengths many neighbours do - hanging the duvets and pillows over the balcony to air, and that all year round, even when it is -15C in the early morning as promised next week. It does have its points - freezing kills the little mites we all have in bed with us!

Our hospitals use duvets - with lovely white covers, just like all hotels. Hotel ones are about a foot thick but light and fluffy. Hospital ones are thin - and can be washed at high temps I imagine. As an aside - the hospital has a bed-wash, like a car wash for beds...

[Soraya_PMR in reply to PMRpro]

A bed wash? Fantastic!

[PMRpro Ambassador in reply to Soraya_PMR]

They had a programme on local TV last year with all the innovations in the new parts of the hospital! We even have a proper high tech kitchen where they cook REAL FOOD! If I am admitted the food arrives already ordered as gluten-free (to avoid wheat) and an apology I didn't get a choice for the first meal. Their computer system works pretty well.

Oh - and there are the equivalent of Enrolled Nurses who do the food duties including feeding patients unable to feed themselves and cleaning the ward daily etc plus basic nursing duties.

[Soraya_PMR in reply to PMRpro]

Our hospital had a brand new, all singing, all dancing kitchen built, then sold food provision out!

It was a bad day when ENs were ditched.

[PMRpro Ambassador in reply to Soraya_PMR]

Why build a kitchen and then by ready-meals that need a microwave system that overloads the system? That's what happened at Durham! A friend who needed gluten-free was admitted for a week. And had the same meal EVERY DAY - shepherd's pie. Only gluten-free meal they had. It was beyond them to make a jacket potato.

It is time the EN and SRN system was brought back. Practical training and add on the degree stuff - and of course, pay them a salary while training and working...

[Joyce1952 in reply to Soraya_PMR]

It is like sleeping in an envelope, lol, held down and can't move 😴

[Soraya_PMR in reply to Joyce1952]

Apply air mail stamps and address yourself ‘somewhere warm and relaxing’

[PMRpro Ambassador in reply to Hidden]

It doesn't stay this bad. In a year you will look back and see how far you have come. I just take advantage of the vacuuming problem - hated doing it anyway. So I don't...

And we have single duvets - makes life so much easier. Do have a double sheet though - over foam mattresses, so much lighter.

[Hidden in reply to PMRpro]

I so hope that in a year from now... I'll be saying, "PMRpro, you were so right! Everything is so much better now."

We have a king duvet, king fitted sheet and 4 bed pillows... I like the idea of two duvets though!

[Soraya_PMR in reply to Hidden]

Two duvets are a boon, for me who gets too hot, and hubby who snuggles up like an Eskimo. Also none of that duvet argument when the duvet disappears when one rolls over. Plus the singles go in my washing machine.

[PMRpro Ambassador in reply to Soraya_PMR]

Exactly - we started it when OH had the Big C first time round and was permanently frozen in the hottest July for about a hundred years!!! Hate it when we stay with people with double duvets - always thick and sweaty and they get huffy when I say we can use our bedding (need it for visiting the girls anyway). You never get doubles here in our part of mainland Europe, always enormous twin beds and single duvets.

[Hidden in reply to PMRpro]

I really do like this idea!

[Hidden in reply to Soraya_PMR]

I like it!

[Soraya_PMR in reply to PMRpro]

I couldn’t do a double/king duvet. I’d be missing in action and found 2 weeks later, probably snoring inside the quilt.

I did invest in a Dyson, light weight, battery/no flex vacuum. Much better, charge doesn’t last terribly long, so an enforced rest for 3 hours while it and I recharge.

[PMRpro Ambassador in reply to Soraya_PMR]

No - I do like Muriel the iRobot...

[yogabonnie in reply to PMRpro]

my son swears by his roomba. his wife says she brought their sweet dog into the marriage and he brought roomba. He talks about it like a child! haha. i'm tempted but wow they are pricey. maybe EBAY!

[PMRpro Ambassador in reply to yogabonnie]

The basic one wasn't too bad for price - the top of the range ones which you can programme and stuff are said to have less effective suck so if you want clean, the cheapies are preferable. I don't like leaving mine on its own - it does occasionally get stuck on the bottom of a couple of chairs trying to climb ofter a bar.

It's a bit like getting a Dyson used to be - you are embarrassed at how much dust wasn't picked up before! My wooden floor is definitely a different colour...

[nevagivup in reply to PMRpro]

I wish I could say the same for my case. All these many years of constant flares or, as others say, relapses, I never felt well, due to low and increased you-yoing of Prednisolone. My adrenals have packed in now, (Synacthen test says so) but I'm still trying to find the right dose. From 3.5 to 5 mg which was recommended by the reviewing Endo, I have relapsed again and after putting up with painful neck and shoulders, then could feel it in my legs for almost a week I went up to 10mg yesterday. Here's hoping it works, then I'll reduce to 7.5 mg minimum dose, suggested by a retired Endo friend of ours.

[PMRpro Ambassador in reply to nevagivup]

I didn't say she'd feel well - I said she'd see a positive change from now. That is different - and often part of it is the acceptance that this is where you are and being able to adapt what you do and how you do it.

I have to say - if my adrenals had packed up I'd want to be a bit above 5mg. After all, your body makes the equivalent of about 7.5mg pred. And if you don't absorb 90% of what you take - then you will need more to get the physiological dose won't you?

[nevagivup in reply to PMRpro]

True!

[Hindags]

I completely agree with you. Absolutely ridiculous. Ten days ago I awoke feeling so good. No good reason I could think of. Then the usual aches after going with the good feelings a bit too much in morning exercises. I find my shoulders definitely less exercise tolerant now at 6.5mg than they were at 15 or 12 or even 9.

I hope I didn't overdo at those higher dosages and do permanent harm. Nothing to do about that I suppose.

But (I am now whispering and knocking wood and crossing fingers, don't want PMR to hear this) the last four days I have not experienced the waves of fatigue I've been feeling at some point every day, late afternoon or early evening, for the last several months. Those waves have visited me on a daily basis, giving me the weak wobblies when they first appeared, then more recently just waves of fatigue that came made me want to stop everything. Luckily the weak wobblies and the waves of fatigue were time limited, usually no more than a half hour or so once, maybe twice a day.

I honestly don't know what to make of this. I'm trying not to take advantage of this new stage. Prepared that the waves will revisit me soon enough. I will be disappointed of course.

Speaking of disappointment, my visit to my 75 year old younger cousin had to be cancelled. She's in pain with ankle problems and is having problems walking. She's had 3 operations in the past year or so to be able to walk: knee replacement, and two back surgeries. Each was successful and now her ankle is painfully locking up. Her journey makes PMR feel like a piece of cake by comparison.

[Celebrant]

makes me feel so much better in having to change to lighter bedding as lifting the comforter was too much!

[yogabonnie]

Spoon theory! Carry on. slowly. rest. go. rest rest. go rest rest rest go. sleep.

[yogabonnie]

speaking of Duvets (we speak of the somewhere on this thread..) watch this!!!!!!! YEA!! change your life. youtube.com/watch?v=uH4VhFG...(Not working as expected?)