I did it!

[Lynnray]

Just got back from an amazing holiday visiting India and Nepal,

Having been diagnosed in 2017 with p.m.r and got down to 10mg I was determined to go as this trip was a present from hubby on my retirement, it was the most amazing adventure ,

From the madness of Dehli with its traffic chaos, cows walking down the middle of a 5 lane motorway, visiting the Red fort India gate Qutd minor tower , driving to Agra the majestic Taj Mahal,sitting with hubby on Diane's seat! Visiting Agra fort,

6 hour drive to Jaipur the Pink city,having dinner with local family,staying in wonderful hotels visiting Ranthambhore national park to see tigers we saw mum with 3cubs! Having Tuk tuck rides, riding elephants

Flying to Kathmandu the most beautiful place on earth

Seeing the devastation of the earth quake and the amazing people ,Waking at dawn to see the sun rise over the Himalayan mountain range, meeting a Sherpa who told us the oldest man to climb Everest was 86! We had the most amazing time Visiting pokhara staying in a cottage on top of a mountain , the night sky amazing stars

After a 15 hour journey home I crawled out of the car didn't think I'd make it up the stairs but 24 hours of sleep, I'm back

Don't ever let PMR stop your dreams fight it all the way!!

Now where to next!!!!!!

I

[markbenjamin57]

Greetings Lynn

Thanks for your Post. It's always nice to hear positive stories and experiences from Us Lot with PMR (and GCA). I'm a great believer in Positive / Motivational 'Stress / Load'. By that, I mean the type which gets us excited and enthused about doing something challenging, rather than dreading it.

I agree, try not to let the tough bits of illnesses like ours stop us doing the things we love and look forward to. But, from experience.. always be aware that it might take a bit longer to recuperate afterwards, and not to fight the PMR Dragon tooooo much!

'Uncle' MB

[Hidden in reply to markbenjamin57]

Yes, agreed. ....and not to be a "Negative Nelly," but we also need to be realistic with ourselves about our abilities and NEVER fall into the trap of comparing ourselves (and our ability to accomplish things) to others who might be experiencing the disease(s) to a different degree, or at a different level. : )

[4840 in reply to Hidden]

Mamici1, I fully agree, we all have different limits of tolerance and degrees of the PMR disease. We cannot compare ourselves to others.

[DorsetLady PMRGCAuk volunteer]

Hi,

Good for you! And such a sense of achievement- I felt the same after my first trip to NZ in 2014/15 - you realise that life does go on!

[1964-karina]

Good for you! I was the same diagnosed in October 16 went to Florida for Christmas 16.The Disney magic worked a treat 😀make memories while you can

[Rose54]

Well done

Gives me hope for myself for Disney Paris in November with a 3 year old

[Lynnray in reply to Rose54]

You will make such happy memories even if it's hard my 3 year old grandson Freddie crawled into my bed and said nannie I missed you so much did you bring me a tiger!!

[Hidden]

WOW! Good on you!!! It sounds absolutely amazing!!!!!! Trip of a lifetime! I could not have managed it though... no matter how hard I "fought."

I believe that there must be varying degrees or levels of both PMR and GCA.

There are so many accounts of numerous people continuing to work, take trips, leading, busy social lives, going to the gym (for goodness sake), after their diagnoses and steroid treatment... and then I read other stories involving lots of people, who can barley get through a day without a nap, or those like me who are unable, for 5 months now, to get back to my job or to my volunteer work at the hospice, because of the exhaustion and fatigue.

The divide and differences in personal experience is just so wide and diverse...

I really am happy that you got to experience this incredible trip!

[GOOD_GRIEF in reply to Hidden]

We get better. Hold onto that.

[Hidden in reply to GOOD_GRIEF]

Yup... I know we do... for sure!

Unfortunately not all at the same pace, within the same timeframes, with the same levels of pain and fatigue or with the same level of ability to accomplish things...

No matter how hard I "fight" (In fact, wasn't it you Good_Grief who told me months ago to "STOP fighting!" I might be wrong, it may have been someone else) there are many things I cannot accomplish, that many other people can.

Just sayin....

[markbenjamin57 in reply to Hidden]

Well said Melissa, and so True.!

[GOOD_GRIEF in reply to Hidden]

Yes, I know. But there are a lot of things you are accomplishing that others can't:

Publishing your rants and making us all laugh and cry

Intermittently playing with dogs

Making scratches disappear from purple leather couches'

Finding a snazzy roller and using it on your daily shopping trips and inspiring others to try

Exploring your crafty/artistic side with you gin girl and your masks

Loving cuddle days with your daughter and your grandson

Discovering the guy you love is a rock

All while wrestling the Monster

Those things are memorable. And important. And valuable. And some of them never would have happened if you weren't in this crummy situation.

Who cares that you can't make the bed? Or round up the dust bunnies? You will again, and all too soon. And you'll wonder why they were ever so important in the first place.

[Lynnray in reply to GOOD_GRIEF]

So true I forgot to mention the tears when I couldn't climb that last few steps the sheer exhaustion when the 4oclock phone call to make the trip to see sunrise , I can now sleep standing up , my fellow travellers where amazing it was hard but wow tHe memories

[SheffieldJane in reply to Hidden]

Your time will come. The others are just lighting the way that’s all. 🔜

[enan-illuc in reply to Hidden]

Greetings Mamici1,

GCA is a tough one and it just takes time and a lot of Prednisone but you will get better. I am at the end of year two and starting year three in May. I believe we will be able to take the "Trip of a lifetime" it will just take us longer. I am planning my trip now.

EI

[GOOD_GRIEF]

I am so happy for you!

Now you'll have to spend some time sitting still and putting all the photos into albums (even if digital).

We need to see some of them...

[Hollyseden in reply to GOOD_GRIEF]

Great idea Good Grief. Let us see photos of some of those wonderful places you visited. You are allowed a few naps first though Lynnray 😊 Sounds like the holiday of a lifetime

[Lynnray in reply to Hollyseden]

Thankyou I will try to download a few of the 480 I took😅😅😅

[SheffieldJane]

What a magnificent adventure Lynnray. The bravest that I have read of on here yet. India is on my bucket list too. Amazing and well done you. Such a spiritual place I have heard. I hope you brought some of that home for your journey to full health.

[Lynnray in reply to SheffieldJane]

Nepal is the place for hope and made my little Pmr seem small those people have been through so much ,but they take you into there hearts its amazing

[Judyliz]

Lynnray

How utterly wonderful, every word appears full of joy and such pleasure at what you have done, seen, been a part of and achieved. Such memories.

As I write my daughter is just pulling into Goa after a 15 hour coach trip from Mumbai. I shall live vicariously through her stories and pictures.

For a reason that probably goes back to some inherent cave woman instinct and thinking I can't be more than 2 hours away from home. I just don't feel safe. The GCA has completely changed how I see myself, how I feel, behave and react and no two days are the same. Once you have caught up on your sleep and the dreaded washing please let us all live vicariously through a couple of your favourite photographs.

It is a truly splendid post and I shall make sure I read it again. Quite inspiring.

Judy, PMR and GCA

[Lynnray in reply to Judyliz]

Thankyou I too felt right up to the taxi arriving to take us to the airport "what am I doing I can't do this I've just had to increase my steroids up from 8 to 10 my whole body aches but seeing my husbands face and being our 43 wedding annervisay I jumped into the cab sod you Pmr I'm going!!!!!!!!!

[Hidden]

Lovely. It's sounds like the holiday of a lifetime. Well done!!

[York54]

What a fantastic post. Now I feel inspired. This blinking illness will not stop me!! Thankyou.😃😃😃😃😃

[Telian]

Wow, that's a holiday and a half in anyone's book, well done you. No matter how you feel afterwards you'll always have those fantastic memories to relive each day. Sounds soooo amazing.

My aim is to go back to Oz where no 2 son lives. Haven't been for 4 years now but never give up hope. In the meantime they're coming over for Christmas yeeeaaah!

[Lynnray in reply to Telian]

No 2 son will be so proud of his mum no mater where you see each other fighting this illness is hard he knows and you will get to oz I know

[Telian in reply to Lynnray]

I'll will truly hold that thought, many thanks Lynnray, got GCA also..

[Hidden]

Wow! What memories you've got from this trip. I feel positively elated reading about your journey and on this very wet morning 'up north'. Well done and thank you for sharing them. Photos to follow?

[hey_suz]

❤️

[Mitziecat]

Well done you 😀. Great achievement & must be a real morale booster for you. Keep doing what you want to do within reason.

[Hindags]

PMR 12/2016. DR Pred taken 22:00. Tapering 6-5 on 38 day taper.

I wish I had done more when I was on higher doses of Pred. Ten mg was about the best for me. Since tapering lower, I've been dealing with periods of weakness in the late afternoons that leave me hesitating about travel right now.

So glad you had such a wonderful trip.