While admittedly many of us were type A, busy achieving types before PMR/GCA maybe it would be helpful to re frame our thinking of our PMR/GCA journey. My thoughts usually run to the negative and so lately I have challenging myself to instead think...
1. Maybe I am really doing the very best I can for today.
2. Maybe my next taper will be much easier.
3. Maybe I am eating the best diet for my condition at this time.
4. Maybe my small bit of exercising and walking ( or whatever I can do) is making a huge difference).
5. Some day I really will be better but just not today.
I think some of our frustration with Drs. is the feeling that we are not trying hard enough or not doing everything we can to be better which is a big fat lie. Let's give ourselves some kindness that chronic illness is very stressful and we each have to find our own way. I am not against looking for what will help me but have given up the obsession and no longer have the disposable income I once had. I have been at this over three years so I am also no longer in the "early days".
Wishing you well today,
Terri
7.5 3years 3 months
this is what my bunny Millie looks like
Written by
bunnymom
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I have had a pretty hard two months. Stomach flu, cold that lasted two weeks and then damaged inner thighs muscles at exercises. Three weeks later still hurt but better. Now I have bursitis in hips but better. I was getting very depressed but when I looked at the big picture I thought no wonder!! I got help so getting better. Managing my thinking is very intentional. Doing small happy things about the house each day.
Lovely bunny, Mummy. Wise words there too. After 10 months I'm beginning to stop lamenting and resenting the things I can't do at the moment. Slowly starting to accept a new way of life, which in some ways is much more relaxing. I haven't given up, I know I will get better, but I'm accepting and learning to enjoy the good things about the present.
That is exactly the way forward . Be very intentional in your thinking... Joy in small happy things of the day. Will keep depression at bay. Always a concern with chronic illness.
Brilliant so glad to hear it , and isn't coping with the illness easier when you get to where you are now. People forget that recovery is as much do with Mindset as it is with Medication. Take care x
Hi Terri,I am 3yrs 4 months on this journey.I find myself thinking this is the normal me now as it's still ongoing.I think self care is the key and doing the best we can to look after ourselves whether that is walking,eating healthy food(+treats),doing things we enjoy and trying to be social.Stress is a big thing for me and I try to avoid it like the plague otherwise the pmr really kicks in!
I am at same stage as you Bunnymom. 3 years 4 months in and on 7mg. Trying to be positive. It is at is, but I so wish I could do more than I can at the moment. Thanks for the post. It echoes so well how many of us are.
Millie is a cutie and thank you for those positive thoughts. I also think that because pmr is a hidden illness, we get really frustrated with ourselves and the world. Baby steps and all that.
Thanks for your uplifting post. I love your suggestions and agree that a positive mindset is key to making it through these conditions that often stick around for years.
Your bunny is SO sweet....what a cutey!!!!!
Btw....is Millie a house rabbit? I used to have a couple of Guinea pigs that amused me for hours running round the house chewing book covers. Not to mention the telephone cable. My phone was 6 inches from the wall by the time they finished. My brother's family have 5 or 6 rabbits that are part of the family.
Oh yes. She lives upstairs and downstairs I have a little lop named Happy. Millie is in my bedroom at night and likes to stick her nose in my ear for a pet in the middle of the night. Very tickley but she doesn't do it often. She makes two of the cats stay downstairs as she runs the place. And she is a chewer. Happy not as much as he is an old guy.
1. Tell the people I work with about my condition.
2. Talk to people about my condition.
3. Try to be happy.
They sound like small thngs, but talking to people was hard to start with, well we all know what men are like! Being happy was much easier. These 3 little things have helped me a lot. I don't hide things from people.
I've been lucky with my doctors, they have let me control my reduction. Well after my first flare I told my first doctor what I was going to do, all thanks to HU for the strength I needed to do that.
I have also made the most wonderful friend, it's so fantastic to have somebody you can confide in.
Julian
3.5 years, 4mg tapering to 3.5mg.
So grateful for the tapers from here, they work so well.
Been at this nearly two years and with other Chronic illness for twenty ( this month actually but not an anniversary I like to remember) .
I know that although we are in a rush in mind and body as Newbies in the beginning ( more like a Hare than you're lovely bunny!) it is far better once acceptance has set , and when we've adapted our lives as much as we can to cope with the disease we have , it is far better live like a tortoise.
Because the tortoise always gets there and wins in the end.
I wrote my self a list of tips that I put up in a post this New Year ( a Mantra or affirmation I suppose , if you , or anyone wants a look you can get it via my profile)
I stick to it as much as I can but I don't punish myself when I have a Bad GCA/ PMR Day and can't manage to follow those simple rules .
Much like your ," Maybe" list my Mantra allows you to reward yourself for the achievements you make each day , no matter how small , not punish yourself for not being the way you were before.
It also reminds you to be honest with yourself and others about your abilities on a daily basis so you don't add unnecessary stress to your life and lose the race by trying to fulfill unrealistic expectations .
Acceptance and adaption is the way to Serenity , and Serenity is the key to being able to cope with this illness in a calm and positive way .
When you find these you discover that , despite PMR , you can still live your life in an enjoyable way even if it wasn't the way you had always planned to before PMR decided to be your misbehaving side kick.
Thanks so much for your post it is great to help remind us all regularly that every journey begins with baby steps.
Acceptance really is the key to life. I love the serenity prayer. God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.
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Down to 1 mg Pred and how to let go?!
Let's talk about our eyes.
At last, some let off for him!!
Was I lucky today to have PMR?
Let's hear it for the boys!
