A holiday with PMR?

[Rokerman]

Hello Everyone,

I've seen several posts in the past where PMR & GCA sufferers have expressed some anxiety about taking a trip abroad, particularly when newly-diagnosed. Having had to cancel a trip to the USA exactly a year ago just prior to starting on 15mg of Prednisolone, I was feeling somewhat nervous last month as to how I would fare on a long-haul flight to a three-centre holiday.

So - I'm happy to report that I coped with the flights, two drives (first time on USA roads), LA-San Diego & Temecula-Las Vegas, and trips out every day (no 'chilling' anytime!). Yes, it was tiring but at no time did the dreaded 'flare' present itself.

Having heeded the advice from our experts on this forum, I took the following precautions: I stopped the DSNS taper just before leaving. I upped the dose by 1mg on each travel day I took with me a 60mg over-supply of Pred

For my own part, I stretched my budget to the max bought Premium Economy tickets for the first time - the physical benefits may be marginal but it was a more cosseting experience and set me at ease from the 'off'!

ANYWAY - the message that I wanted to get across to new sufferers of this infuriating and debilitating condition is: don't despair, you can get your life back and you can take a break - even far away - if you plan ahead and take precautions!

Ah well - now to get on with the sub-7mg taper....... best Wishes to all with their recovery!

[DorsetLady PMRGCAuk volunteer]

Hi, well done.

I think sometimes we get a bit paranoid about doing something different when we have GCA /PMR and that's understandable. But life does go on, and once you have been diagnosed and treatment started then you should try and get back to enjoying life again, albeit that it takes a little longer to do things, and certainly a bit more planning than previously.

I've always found that if you ask for assistance beforehand, it's always there. I think the most difficult thing at the beginning is to admit that some assistance would be nice - and it's not a sign of weakness, you don't have to prove to anyone, least of all yourself, that you're superman/woman! That's so 20th century thinking!

As I've said before, I went to NZ, stopping off for a couple of days in Singapore, when I was down to 7mg (had a trip earlier in year to Spain as practice) - on my own - and the sense of achievement after doing it was tremendous!

And yes, if you can afford it, travelling in a higher class does make the difference.

I've already booked my next NZ trip for my daughter's 50th birthday later this year.

[Rokerman in reply to DorsetLady]

Hello DL - yes, I saw that you've got a trip even further away and, travelling alone? I have to say that I've never done a long-haul flight on my own and my wife's organisation and navigating assistance are invaluable!

My various hosts helped with shifting the heavy suitcases - just as well since I've only recently conquered the morning kettle - as recently discussed with PMRPro..... I struggled a bit at Heathrow but one of the benefits at Las Vegas is that there is an outside check-in/weighing machine next to the drop-off sidewalk - brilliant! I didn't request any formal assistance - male pride, I suppose.

A few notes on the trip: 1 I'm not a gambler (couldn't even operate a one-armed bandit - of which there must be several million in that crazy city) and only went there as my wife's niece lives on the outskirts 2 If you go there in the hope of returning with a small fortune - it's probably best to start off with a large one......... 3 A hotel is actually a vast casino with a 'themed' interior (Ancient Rome, ancient Egypt - take your pick) with a very large accommodation building tacked on . The size of each one is about that of Westfield shopping centre - foot traffic inside and out to match - so be prepared for hard footslogging! 4 For those of you worried about Pred weight gain - forget it - you will seem stick-thin...........! 5 Getting out of the crazy city is great however, everything natural or man-made is VAST - just avoid the summer heat. 6 Staying at one of the biggest hotels - get a mortgage or see (2) above. Not worth it but the Bellagio fountain display is something else!

Travelogue over - just one footnote - arrived home 11:00am, slept until 2:00pm on Sunday!

[DorsetLady PMRGCAuk volunteer in reply to Rokerman]

Hi,

Got started on the travelling alone quite early in married life - at the age of 20 (back in the late 60s) first trip abroad (almost) was flight to Germany to join hubby when he was in the Army.

Have done a fair bit since then for work, but since my husband died in 2013 have done trips to Spain alone - meeting son & family there (me from Southampton, them from Manchester), and internally to visit them.

Plus, if I want to see my daughter and family, which I obviously do, then it's easier and cheaper for me to visit NZ than the other way around. Fortunately visiting family I don't have any problem in having a well needed lie-in - and I stay long enough not to have to rush round like a maniac trying to sightsee everything in a short time.

I always get a lift to and from airport, neighbours my end, family the other, so I don't have to worry about that either. Just turn up!

As my son says "you just need your passport and a credit card and you're good" - typical man, his wife does all the organising!

[PMRpro Ambassador]

As you know - it has never stopped me. With or without pred! I do like to allow a day to recover after a long travel day though. And airport assistance makes a BIG difference.

[markbenjamin57]

Hi Rokerman

Thanks for your inspirational post. I remember your previous post about your worries about coping with your forthcoming trip after the last one - and whether or not to go ahead. I can well-relate in a similar context.

Just to say: 'Yay - you did it, and Congratulations! And without any major set-backs afterwards - well done! :-). I absolutely agree with your message: i.e. try not to despair and let PMR - and the nasty symptoms of it - stop you from at least trying to get on with life as 'normal' (whatever that means!).

For what my (amateur) opinion is worth, the emotional challenges of PMR / the effects of the Preds (?!) can be as significant as the physiological ones - and one of the greatest challenges of coping with this illness can be in our perceived confidence in our ability to live life and enjoy it as best we can from day to day. Work in progress for many of us, no doubt...

Again, I agree: even at sub 7-ish mgpd on the Preds, there can still be a long journey ahead. But it's not necessarily as tough as we might fear. I've just done 3 days' worth of physical out-door work and, although feeling 'nicely' tired, not feeling so bad considering!

Best wishes - 'On, and Forwards'

MB

[Retailmonkey]

Hi Rokerman

Thanks for sending out the positive message. We all need to manage our condition and though for some that is more difficult than for others we dont have to give up living

I am lucky that I have not had to give up working since my PMRGCA confirmation having felt at deaths door before it and beung past my 3 score years and 10.

Since the end of August 2016 I've had 4 two week trips to Moscow, a week in New York and I am currently on my 4th trip to Switzerland (typing this on my phone whilst having breakfast looking out at a beautiful day at Tresa Bay by Lake Lugano).

I always carry a good reserve supply of pred and am quite prepared to manage reductions to fit my schedule or take a break if I feel fatigued. Like you now down to 6mg

Having my next ultrasound scan on Thursday and hopefully the inflamation in my temporal and under arm arteries will have reduced again

To everyone, stay strong, stay positive and keep on living - it is the only earthly life you have (appologies to those who believe in reincarnation)

[Rokerman in reply to Retailmonkey]

Wow - that's some travel schedule! Work, pleasure or both? I'm still working too - out of necessity as my daughter's getting married in December and the budget seems to be going the wrong way..........

I think that we PMR sufferers are more wary of the long, far-away trips - it's perhaps the spectre of GCA lurking in the background?

Anyhow - with the big Birthday coming up in August and having one long - haul trip under my belt, I'm able to contemplate more ventures before anno domini (let alone PMR) prevents me!

Must get on with some work now - otherwise won't be able to afford it........

[PMRpro Ambassador in reply to Rokerman]

There is some suspicion that the more is spent on a wedding the shorter the marriage turns out to be!!!!

You know - you need to look around you when flying. I have seen people boarding for flights from China or the other side of the USA to Europe who made me with PMR look comparable to Mo Farrar or Andy Murray. There are always ways around being a bit stiff!!!

[Rokerman in reply to PMRpro]

PMRPro - can I put you in direct touch with my daughter...........?!

My wedding in '69, when I was still a student, cost about £50 from memory! (My wife made her own wedding dress & later cut it down into a mini-dress for going out😀)

[PMRpro Ambassador in reply to Rokerman]

I made my own, my mother's friends did the reception. No idea what it cost in 1974 - that year there was no electricity, no fuel - no most things!

Ours were handed a cheque - after the wedding though. They were told how much it would be, that was what they were getting as a wedding present. If they wanted to spend less, there would be money over for a deposit on a house or whatever. If they wanted to spend more - that was their business but they needn't ask us to contribute thank you.

It worked - the older daughter spent about £120 on her dress, the younger was more but not that much more I don't think. Their cousin had her wedding at Kew Gardens - the charge for the reception venue along was more than both ours spent together. Did it make it any the more memorable? I don't think so!

[piglette in reply to Rokerman]

My brother's wedding in 1980 cost £18! The main cost was the white ribbon for the car. A church wedding even, my sister in law's father was an archdeacon so free church. I did the photos and used the flowers from the garden for the bouquet and for button holes, also I was the chauffeur using my company car! Her mother did the reception at her house and her aunt made the cake. My brother wore his suit and my sister in law used a posh outfit she had for work. We all went to a Chinese restaurant for the party afterwards and paid our own way.

[Retailmonkey in reply to Rokerman]

Work fortunately or unfortunately depending upon the way you look at it. I'm not sure I would call it work as when you go on holiday to get on a plane, stay in a nice hotel and meet nice people and that is what my trips are like though with most of the day being spent in an office though doing ery satisfying things

I have GCA as well as PMR and I guess realising just how easily I could have partially or totally lost my sight has spured me on to get as much out of life as I can (as seems to be the case with many of the contributors to this forum)

As for weddings my first in 1968 was very small and inexpensive, )on a Friday and we went to friends wedding the next day) and my second in 1999 even smaller. As for my children they were both told they were on their own so could spend what they wanted (in one case very elaborately and the other quite but they would get decent wedding presents

Enjoy the big birthday in August and many more to follow