I have learned so much from all of you so willing to share that I thought i might be able to help some also along the journey. Here are some things I know now that I didn't know before. Take what you like and leave the rest.
1. I don't put myself in situations where I may have to hurry. My brain doesn't function that way right now. It stresses me out and then I can't think and get irritable.
2. I know that I can't remember things so I write down and date everything or delegate the remembering to someone else.
3. When I know I have good brain power I work on the important stuff like finances.
4. My first response to any thing asked of me is usually no until I can think about it.
5. I suspect that people around me would really like me to be well and really don't want to know how it really is so I limit my sharing when asked how I am doing to "about the same or better or thanks for asking, how are you by the way" I have a nurse friend who likes the details and another friend with a chronic illness so they enjoy the details.
6. I save my energy for doing what I really love and feeds my soul. Right now it's gardening and I forgo other things to be able to do that. I ask for help, pay for help or make changes so things are more manageable. I am very careful not to hurt myself or overdo.
7. Don't be surprised if you end up seeing lots of doctors. I guess many of us are at the stage where we have a lot of different things happening in our bodies. It has taken 8 medical professionals of different types to diagnosis and help a painful arm and shoulder that I've had for a year. I have a bulging disk in my neck which I just got a steroid injection for and arthritis in my upper back which I also got an injection for. The upper back injection has taken care of rib cage pain which I had attributed to PMR. Sorting out these other issues I hope will help me lower my steroid dose which is currently at 14.5.
8. Surrender and let your life change for the better. I will be retiring at the end of the next school year, as well as shortening my day to 6 hours per day. I simply can't do the job anymore and I love what I do but I can't. This is 3 years earlier than I intended but I have tried everything to manage it and it is what it is. My life has consisting of working and resting so I could work again and that is just not good enough anymore. I believe that there will be good and exciting adventures ahead where I can be of service to others, so all is well.
9. Try not to beat yourself because you are not doing it "right". This is very much a do it yourself journey with not many guidelines to help. Hence the excellency of this group. When we are fatigued,,did I do too much, should I rest, should I exercise, is it the medicine? Am I doing it right? ( that is what lingers in the back of my mind and the answer used to always be no, but I am getting free of that mindset and reaffirming to myself that everyday I am doing the best I can for me)
10. I finally went to see a dietician after trying multiple dieting ideas. I think she has found what will work for me that I can live with forever. I also feel full and my weight is now trending down instead of up. Hurrah!
11. When I am out with people and start to swear at them in my head, it is time for me to go home. Red flag for me
Sorry for the long post but I have been carrying this in my heart and hope it is helpful to someone out there.
Bunnymom
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bunnymom
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How lovely to see those thoughts and lessons set out so well! Thank you! And I will pass on to my dietitian daughter what you said about your diet. I think she often feels it's an uphill battle and it's nice to hear that advice from her profession can really help!
Thanks so much for this inspiring but also practical advice.
I admire your philosophy about dealing with these things, and your post should be listed in the 'Coping with PMR and Life Changes' section on this site.. if there were one.
For me, at least, your point # 9 is the key, i.e. not to get trapped in self-doubt / blame for a serious health condition that's probably NOT a result of anything we've done 'wrong' in our lives. It's a roll of the dice - as are so many Life events.
I'm sure you'll get lots of positive responses to this one..!
Agree with all of it - resonates so well. Although I have problems saying no. I say Yes, then stress because I know I cannot manage .... so this is work in progress.
Great to see it all together like that, I am sure many of us will find it reassuring to see it written in black and white that its ok and normal to feel like this.
Bunnymum thank you for a wonderful post, you are spot on with your whole list as far as I am concerned. Only someone who has travelled this journey could be so accurate about life with Pmr/GCA. Reading this at 3.30 in the morning having had very little sleep has been a real comfort. You will never know how much you help so many of us. Thank you.
Wonderful practical advice. One to print out and keep close. Thank you for taking the time and sharing your wisdom. Your first point struck a cord with me straight away. I can't think quick enough. I've given up driving any distance as I just can't make decisions fast enough and don't think I'm safe. Around where I live is fairly quiet and I know the roads and I'm only driving a few miles, but anywhere else is a no. I would rather be over cautious and not drive at all. Another task that falls to my long suffering husband. I hate the fatigue and the brain fog! I'm getting better at pacing and choosing tasks to do and agree whole heartedly with saving my energy to do the things I want to do. It's taken me 18 months but I've finally realised you can't fight this dreaded disease you have to accept and adapt and keep telling yourself you will get better.
Thank you for sharing this Bunnymom! I am also giving up my job as I can't do it anymore ,too much stress for my body to cope with but I`m excited for the next adventure too.Point no 11 is how I feel most days!!!!
Such a thought-provoking post. Thank you for sharing. For me it served as a reminder of all the things we can do to help ourselves - number 1 made me smile- how long did I accept those early morning appointments at the surgery before I realised I could simply ask for a late morning one and save myself all that rush which created such stress?
So often treatment for chronic illness focuses on the blood tests and medication. Important though they are, they are only part of the picture. As important are all the points you've highlighted which help us to feel as if we have some sense of control and can influence how we manage our day to day experience of living with long term chronic illness.
You sound like you're in " a good place" I'm hoping to get there too!
Hi bunnymum ..This is all so True of my long PMR journey and in the last few months since being confined to a wheelchair to get out of the house I have wanted to give in to this awful condition..pushed and shoved because I can't do what I used to do,made to feel guilty because ..Haven't you kicked the Habit yet? (meaning steroids)..I Will read and re-your post..it's no point showing it to my partner or Family as they just don't want to know. Good luck and Best Wishes trish 29
Hi again bunnymum ..my arthritic fingers got in the way. I meant to say ,I will read and re-read your post time and time again..it's reassuring to know that there are so many people out there in different parts of the world who feel like I do,but I also feel for them ..The latest flare was due to losing a Darling Brother in February and last week I thought I would improve because his Ashes were put to rest, but the PMR picked up on my tears and sadness. I have Bowen Therapy treatment tomorrow so l will get comfort through Mindfulness and gentle massage as well .. You come over on your post that you are getting stronger..I find myself frequently feeling like a trapped Animal in a Cage and when I get moaned at because my rest was too long or this or that hasn't been done on the days my cleaner doesn't come I'm afraid I snap back ..THANK YOU again for your post as it's certainly given me Food for thought ...trish 29
Thank you Heron for your Good Wishes and Yes I have Good Memories of my Brother..He was my Rock and My Mentor.. I had 3 older Brothers as I came after the war, the little sister.. He was so Good to me after I lost my mum in 1969 who suffered with PMR which wasn't really recognised at the time and I was her carer from my early teens,,I then lost my late husband 21 years ago followed by my Dad 7 months later ,and younger Brother who was 65 at the time in 2003.. so yes a lot of Grief..PMR seems go have picked up on it .it's just me and my middle Brother now who's in a home with Dementia aged 81.. We just have to get on and Go Forward pain allowing .My Brother who died was an ex Naval Officer..l was Always so proud of him . I often read your posts HeronNS and will continue to do so .we are like 1 Big Family on this Forum ..This has been a Wonderful Post today and Amazing how many sufferers have related to it ..Best wishes trish 29
What a great post, and lovely to see how you've come to terms with PMR. I well remember your earlier posts when you were in a bad place - as we've all been - but how positive you are now.
Point 9 is still relevant after PMR/GCA - I think we all realise after the journey we're going/been through that the answer to 'am I doing it right' is as you rightly say 'the best I can for me' .
Reading this while having a break from (light) housework, before our American friends arrive tomorrow! Thank you so much for putting all this together in such a fluent and relevant way. I can relate to ALL the points, but thank you for no. 10, as I'm a retired dietitian and sometimes wonder about some of the regimes that are mentioned on the forum. I've managed to gain only 1kg in 13 months since diagnosis by eating 'healthily /sensibly' and I'm sure the weight gain is due to my reduced activity level.
This is wonderful Bunnymom! I particularly like number 8, as I am struggling with the work issue at present. I'm currently off sick and heading towards half pay, but when I was working, my life consisted of working and resting so I could work again. I spent every evening and weekend resting so I could commute and work the following day and as you say, that is just not good enough!
This was so helpful that it was all put together and covered the main points that many of us have had to traverse, so beautifully, clearly and honestly. Thank you for taking the trouble to post and as you say this is a prime example of how your experiences will be used to help others x Jackie
What a reassuring post - you do begin to think you are alone - must take your advice and say No first rather than saying yes to all the things I really want to do and then having to cancel!
Something your post has also reminded me to do is to slow-down and 'Negotiate' - both with self and others - about commitments that might be over-taxing in whatever way. By this, I mean physically and / or socially. I've found that even socialising (just chatting with friends etc) can be very tiring with PMR when the mental / emotional energy battery is so run-down.
Saying "No" can be difficult when we want, and are used to unconditionally supporting Significant Others in our lives. In my Business Life, saying "IF.... (the terms are right etc!)" is second nature - and with PMR I've got into the habit of using the IF word much more often with Friends and Family too.
In our context, "IF (e.g. I'm feeling ok..etc)" applies especially, and the people who really care invariably understand. I don't really like that well-worn business cliché 'Managing Expectations', but it does have great relevance in our context!
Your post has resonated with so many here - well done and Thank You again
I love your post! Six weeks in and I really appreciate the tips. I'm in Boston visiting my sister then going to Nantucket to be with 2 other friends (they're sisters, too). When my sister said don't talk about your illness I couldn't take it in. When you give the advise re. talking about it, I get it. I am obsessed with this because it is adjusting to a very new normal. I am a financial advisor specializing in urban school employees. I make my own hours and work for myself. So far, I really can't see myself going into the "hood" when I feel so vulnerable and not at the top of my game. No decisions have to be made at this time. Staying in the moment is my goal.
I do understand the obsession as pmr completely takes over our lives and we are left with precious little direction or understanding. This is a great place to learn how to live a new life with knowledgeable and kind people. You can do it! One day at a time. Even with the small griefs each day appreciate the small joys.
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Silly question about steroid use.
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