Word of Wisdom for those struggling out there.

[Gillgetmeoffthemeds]

After living with PMR for 2 years 6 months, and all the ups and downs along the way, one of the things l have learnt is to listen to my body. Let’s be kind to ourselves through this journey. 🥰🥰

[Longtimer]

Love this Thank you.....will print this out for my sister as well struggling alone with RA.....

(Love your forum name!)

[Gillgetmeoffthemeds in reply to Longtimer]

Thanks Longtimer, yes I love it too. I feel guilty if I’m not getting on with things. But if you struggle on when your not feeling well it’s counter productive and it takes you longer to feel better. It’s ok to take time out.

Yes I gave myself this name in the very early days of PMR. It took me many months before I realised there’s no quick way off the meds, it’s a slow process. Your name is more apt 🤙🤗

I wish you and your sister well 😘😘

[Longtimer in reply to Gillgetmeoffthemeds]

Thank you...

[Christophene47]

Great poem; did you write it yourself?; very comforting.. for those of us with PMR. ; I feel guilty if I stay in bed and don't try to get something accomplished; I will refer to your poem when I am caught in guilt. Thanks for sharing.

[Hidden in reply to Christophene47]

It does take some doing overcoming....that horrid guilt. I have been bed bound at various points due to other conditions. The one thing I know after 13 yrs of it is that I know now that if my body/fatigue is good enough to go then I am up and at 'em. I spent so many years beating myself up, sometimes lliterally giving my legs etc a slap, and calling myself all the names for lazy I could think of. Then 3 days later I am able to do the things I want to an I can't wait to get going. Sometimes there's no rhyme or reason but I am a little easier on myself now. ✍️

[Longtimer in reply to Hidden]

I am convinced our brains don`t match our bodies, we want to do things and picture ourselves doing it....but alas the body doesn't want to know....well, that`s my philosophy for the day!

[Christophene47 in reply to Longtimer]

Actually, an important point. Lacking strength, motivation and interest to do something you really want to do is not laziness. It's a symptom of this disease. I am the same way-I feel very uncomfotable with this mis-match between "illness and laziness".

[PMRpro Ambassador in reply to Christophene47]

Absolutely - I think the motivation thing is a major aspect of the disorder.

[Gillgetmeoffthemeds in reply to Christophene47]

No I didn’t write this, if only I could have, but no I came across it on social media and it brought a tear 😢. Like you say we feel guilty resting when we feel we must get up, get on and get things done, but our bodies are telling us to just stop and rest. Yes it hit a nerve for me, and for that reason I wanted to share with my PMR/GCA family who I knew would appreciate the words. So pleased this brought you comfort.

[Christophene47 in reply to Gillgetmeoffthemeds]

Very sweet sentiment and thank you.?..

[Sho-Sho]

Great poem - the medics should give it to their patients with their first scrip of pred. I have had GCA for nearly 3 years now and still have so many times when the poems words are so apt and comforting.

Thanks

[Lonsdalelass]

Ah, that's really lovely! So nice and comforting to read. I think we can all be guilty of beating ourselves up through this illness, telling ourselves we should be able to do more then realising we can't! I'm going to re read this over and over to reassure myself. Thank you so much posting it.

[Pollypuds]

Lovely and wise words x

[Oumaof2]

Hi Gillgetmeoffthemeds,

That is so moving and so apt to most of us on this forum 🤗 Thank you...

I'm struggling with a heavy chest cold and DF right now.... Energy levels zero and I hate it! Your poem has helped centre my perspective... 14 months into PMR, and currently on 8mg Pred and (was) a young 71.... I'm wondering if I should up Pred dose?... Moderate pain levels, it's just the DF has floored me!

Any advice greatly appreciated... Just so so pleased I'm a member of this wonderful and invaluable 'club'

[PMRpro Ambassador in reply to Oumaof2]

DF is partly your body telling you to row back a bit and sort out your pacing:

healthunlocked.com/pmrgcauk......

[Oumaof2 in reply to PMRpro]

PMRpro, Thank you.... I rather overdid it last weekend🤭.. My dear friend's 70th.... Lesson well and truly learned....

Regards, Lena

[Oumaof2 in reply to PMRpro]

Have read links, thank you....

😊

[Wardma]

Well said: I need to print out as ‘credit card’

[Oumaof2 in reply to Wardma]

Or as a fridge magnet or, framed on bedside table.... The first thing you see on waking😊 Kicking back doesn't come easy, but, it should become the first waking thought ...