PMR; holidays should be on prescription...

[Daisyfield]

Thank you to all to replied to my question about long haul flights two weeks ago.

Pre PMR symptoms, I had booked a holiday to Borneo (7 months ago)...I had saved long and hard for it, and was gutted to think I wouldn't be able to do it. I was really worried about the flights, the jet lag, and the heavy cement legs I have suffered from and thought my activities would be restricted.

But the extraordinary thing is, I have just got back and for the whole time, I have felt like my old self; I have jungled trekked in hot humid environment for up to 7 hours a day, I've been up at five thirty every day. I've been alert and buzzing and enjoying the hustle and bustle of night markets. My family can't believe the difference...many ensuing jokes about me putting PMR on to get out of housework! The only downside has been putting on a bit of weight, as the food was just too good to be careful with.

I think stress has a huge factor in this disease, for me. The disease seemed to come on after a few years of high emotional stress due to family illness and a more recent bereavement. But going away seemed to be a real escape...putting everything else on hold and living in the moment.

Not sure what the next few weeks/months/ years will show with this condition, but I reckon holidays should be on prescription!

But more seriously...whilst there are some things in life that are overwhelming and unavoidable in causing stress...I'm going to try to look at the smaller things that I can change. Has anyone else tried either lifestyle, or attitude changes or other forms of yoga/ mindfulness (not sure I like the term mindfulness, but I can't think of another word at the moment) to reduce stress and reduce PMR symptoms?

[Daisyfield]

Also...I got loads of insect bites...and steroids (10mg per day) have done nothing to stop the itching, which surprised me.

[Highlandtiger]

That’s fantastic. I’m glad it went so well and I’m sure you’re right about stress playing a big part and holidays being good for us.

I have very fond memories of Borneo (except the scorpion sting 😳) from about 10 years ago and I’m sure the break will have done you the world of good.

I go on holiday tomorrow so I hope that I get the same benefits. Not as exotic a destination but a break anyway. I had to cancel 2 trips in my first few months of PMR as the activity I was going to be doing was contraindicated with Pred and was absolutely gutted but I found alternatives to do.

My PMR started in very similar circumstances to yours - after a few years of very stressful situations. There’s always going to be some stress around but I’ve tried to stop fretting over small stuff or stuff over which I have no control to see if that helps. I’ve also been turning off the news recently and going for a walk instead to stop myself shouting at the tv. No idea if it will help but I think it probably does. 😃

[Daisyfield in reply to Highlandtiger]

Ow! a scorpion sting....We saw a scorpion but fortunately at a distance. Leeches liked me!

Yes...I agree...trying not to worry about things I have no control over. And I really should turn off the news a lot too!

Hope you have a fab holiday...we don't usually do exotic...usually Cornwall for us.

[Highlandtiger in reply to Daisyfield]

Apologies for the late response but I remembered we'd had an exchange about the benefit of holidays a while ago when I saw your reply on the NHS thread earlier today......

Well I went to Lanzarote for a week. I’d been certified fit enough (as now on 6mg) to scuba dive again by a dive medic and my GP 'if I felt up to it'. Have been missing diving massively (that had been my main reason for being in Borneo and normally I do it on most of my holidays but I hadn’t been allowed to since I got this condition) but to be honest didn’t know if I would feel fit enough to do it. Well, I did, and did a few dives, and otherwise enjoyed some nice food and drink and......felt the best I have for over 2 years, and by some distance. So I think we were absolutely correct. Holidays should definitely be on prescription! 😀

[Daisyfield in reply to Highlandtiger]

Sounds amazing...I wonder how cost effective prescription holidays would be compared to the drugs! I suppose pred is cheap...so not much different there.

[PMRpro Ambassador]

I don't "get" the mindfullness stuff at all but maybe it is because I have always lived "in the moment" as much as I can. I still sit in the car as a passenger or on the train and watch the world go by - do it every day and it is still different each time. I see things while driving that OH as passenger misses (yes, I know, he's a man).

But it is absolutely certain that acceptance of where you are with PMR/GCA and pred and what you can/can't do makes a major difference in living with the terrible twins. I live well with PMR and pred - no compromising on dose is my secret and knowing what I can/can't do.

[SheffieldJane in reply to PMRpro]

You are mindfulness.🌸

[Daisyfield in reply to PMRpro]

I'm trying to get better a worrying about small stuff less. Hoping it'll help to reduce the pred.

[Blearyeyed in reply to PMRpro]

😂😂😂😂

Pro you are the type of person who has taken part in " mindfulness" all their lives , you just didn't give a special name to it, its just living with a good balance and knowing that the little things in life count and enjoying the world around you.

[Yellowbluebell in reply to PMRpro]

I try and make sure the things that I do with what ever level of energy I have are importnt and then take it easy for a couple of days.

[SheffieldJane]

Thanks for the inspirational post. Mosquitoes leave me alone whilst biting all the young, sweet, people around me. I thought it was the Pred. in my bloodstream. I also felt relief in warm, humid, Australian, Autumn this year. Are we on to something?

[Daisyfield in reply to SheffieldJane]

Maybe....think we should try it again just to make sure!

[Hidden in reply to Daisyfield]

I get bitten all the time...pre PMR, post pred.....60plus once. They love me.

[Highlandtiger in reply to Hidden]

Yep, me too! Everything goes for me. I got bitten by some nasty cleggs (horseflies) last weekend. I was hoping the Pred would have helped with the itching but no, apparently not!

[Hidden in reply to Highlandtiger]

Omg. I have only had 1 horsefly bite and it both hurt and was itchy and swollen. My brother once hired horses and wore his shorts..the horseflies made for his legs...upwards. the bloke who rented them out took them for another 30 mins to be kind. My brother was in agony. 🤣🤣🤣🤣

[HeronNS]

I've found the same with holidays. It was the same the time I was away for a week before I was diagnosed and pred was still in the distant future, and since then while at various levels of pred. I think I should never have been a "housewife" because I think this is what makes me ill. I'd be perfectly healthy if I had a couple of agreeable servants.

[Daisyfield]

Housework is the stuff of nightmares. I do as little as possible.

There is a lovely poem 'Dust if you Must' by Rose Milligan...I try to live my life by this!

[Highlandtiger in reply to Daisyfield]

Me too! The poem was read out at my best friend's Mum's funeral. It was the first time I’d heard it but it it struck a chord with me.

[DorsetLady PMRGCAuk volunteer]

It may be trite, but acceptance of your illness is the biggest thing.

I’ve found that as I’ve got older (with and without GCA) I do things that please me.

I’m widowed (not that that is necessary nor recommended!) so I’m not answerable to anyone. Children live too far away to be called for grandma duties too often. (Lovely as they are!)

I go out regularly for a coffee and a chat with friends.

I’m lucky in that I live in a beautiful part of the world, so I go out for a walk every day if I can. Even if you live in a city you must have a local park - just a short walk in the open air gives everyone a lift.

I don’t feel I have to “keep up with the Joneses” or have the latest fashions as younger women are pressurised to do.

Join a yoga, Pilates or similar class. You spend an hour or so just concentrating on you and your body - and hopefully come away refreshed....and meet new people. Once you’ve mastered the basics you can carry on at home if you wish.

[Daisyfield]

I know I'm finding it hard to accept....but like you, I have no desire to keep up with Joneses etc and I do value friends and being outdoors. And I'm sorry to hear of your loss. But I'm pondering and think of how to live with this PMR...and surprised to see a profound effect being on holiday. And trying to think what changes I can make in my life, whilst holding onto the things I love doing.

I'm waiting to see what happens over the next week or so.

[DorsetLady PMRGCAuk volunteer in reply to Daisyfield]

Thanks.

Coming to terms with your illness actually takes a lot longer than you, and others, realise. We are so used nowadays as a society, race - or whatever you want to call us - to instant fixes- and that includes health. Unfortunately, PMR and GCA can’t be fixed immediately - no matter how much we’d like them to be.

If you haven’t read this already, it might help you understand your illness, and how you can manage it successfully - apologies if I’ve sent it to you before -

healthunlocked.com/pmrgcauk...

[Daisyfield in reply to DorsetLady]

Thank you...a very useful link thank you...and agree coming to terms with any life changes takes a long time...and I'm trying to look holistically at health/ lifestyle. I think some of the things that may have contributed to me developing PMR couldn't have been avoided....some of life's big lows...but I'm trying to find a different way to be...especially to things I have no control over.

But Ive been astounded at just how well I have felt over the last two weeks and so trying to think of things I can change in my life so that I have a better reponse/ long tern recovery to this illness.

[Hellyowl]

I am in awe of your trip to Borneo and jungle tracking but I have to add. Every time I am doing something I am enjoying or excited about I feel better and get a surge of energy. I think the worst thing for any chronic condition is sitting around thinking about it. Like a lot of people I think my illness came on through a series of stressful family events. But I have finished my doctorate and I am looking for work again. I know I am rough in the mornings but will just have to push myself because working in my field excites me. I am on holiday in Gdansk at the moment and having a great time. I go to the gym and do Pilates weekly and although I never want to go to sessions I enjoy it when I get there. I know some members are worse off than me but small challenges are as good as big ones. I would prescribe fun and excitement for everyone if I was a doctor.

[Daisyfield in reply to Hellyowl]

It's been a trip I've wanted to do for a long time...I dont usually do such exotic trips...but do love hill walking in the UK too! That's the norm!

But I agree re mental stimulation...I have had low patches with PMR...feeling not the me I wanted to be...but mental challenge is so refreshing, and with exercise...carefully moderated....knowing what is too much too is important.

Congratulations on your doctorate...that's amazing considering PMR challenges.

Definitely agree small challenges are as good as big ones.

[Hellyowl]

Thanks. I have just climbed the town hall tower here in Gdansk and I don't know how many steps but at moments I thought I couldn't do it. It was well worth it for the view and after coming down and having a refreshing drink I feel quite energised. I claimed it 20 years ago and feel great that I did it again

[9lives]

That’s brilliant glad you had a great time.did you see the orang-utans?

I’m the same, holidays are always great , last year week had 4 weeks down under and one week was spent in a Motor home!!

But not at all uncomfortable!

We’ve been to the amazon/ st Paulo and on cruses halfway round the world no problem, but as soon as home things gradually sneak back. It’s crazy don’t know why. I guess we’ll just have to book more holidays xx

[Daisyfield]

We did...it was all wonderful. Isn't it odd...the body is so complex...all the hormone responses to stress and other things...whilst I am a great believer in modern medicine, I think a holistic approach is important...diet, exercise, low stress.

[Jackoh]

Wonderful that you enjoyed your holiday and wonderful too that it has left you pondering what changes you need to make to tweak life to get the best out of it. We all need to re-evaluate at times I believe. X