1. < Polymyalgia Rheumatica (PMR)

PMR and Emotions and Family

Posted by mopo @mopo, Nov 17, 2021

Good morning! I'm so grateful for this forum. I've had PMR for 3 months now. I'm on an extended dose of 20 mg. of prednisone. I'm so thankful for that. I would like to address the emotional end of this journey and the part that our family plays. There are times that I just get tears and feel exhausted (malaise). I'm not sure if my family really have read up on PMR. I have given them the information. They are quite sympathetic but I would imagine that when they see me in the afternoon and I'm able to raise my arms to hug them that they wonder about it when I tell them that I can't move my arms in the morning. Maybe some of you will agree that you really don't think about the 'years' it might take to remission but day to day really try to keep a 'stiff upper lip' and push yourself through it. Keep smiling and do what you can. The tears/tiredness don't last a long period of time but I hadn't read in this forum anyone talk about it. I believe I need to be more honest and verbal about it when I'm normally taking care of everyone and pretending that things are just fine when they are not. Thank you and I hope you all reach remission very soon. Take care.

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pokey | @pokey | Nov 19, 2021
In reply to @artist01 "@pokey . Hello Pokey. My doctor years ago told me I had to learn to say..." + (show)
@artist01

@pokey . Hello Pokey. My doctor years ago told me I had to learn to say the word "No". He was very strict about it and would always quiz me at our next appointment as to my success or failure. I was like you are - a rampant caregiver! With practice, plus your new limitations, you'll eventually be rewarded with feelng comfortable saying "No" more often! Good luck, and take good care of yourself. Laurie

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Thanks artist01, for your encouragement. I have a therapist I see 2 a month who is working with me on recognizing my tendency to “over function”. Since it has always seemed “a given” to step in and do, it is taking time and conscious reflection to change. The knowledge that my old “givens”can actually NOT be helping others in the long run, is taking time to identify. To think there is actually a reward in the future for all this sifting and working toward change is a lovely thing to share — a small gem in my pocket. Thanks so much!
Pokey

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artist01 | @artist01 | Nov 19, 2021

@pokey. You're on the right track with your doctor, Pokey! Keep practicing. Warmest regards, Laurie

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mzamyl | @mzamyl | Nov 20, 2021

I would recommend to anyone a course that I have taken 4 times now called Mindful Self Compassion. In it I learned that besides compassion for others, there is compassion for yourself. And within that there is a practice called Fierce Compassion which involves Setting boundaries and taking care of yourself. Like many of you, my first impulse is to give of myself and I often do it to exhaustion. When I can’t do it physically because of PMR, there is a strong critical voice in my head. Mindful Self Compassion teaches you to speak to yourself as you would your best friend if he or she were suffering. Here is a link to many of the healing practices. https://self-compassion.org/category/exercises/

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