Aunty Bees Advent Calendar . Dec 18 , Driving , Riding , Sailing Home ( or Away) for Christmas , Pain Friendly Travel trip tips

[Blearyeyed]

If you have already departed on your voyages journeys to interesting destinations , I hope these tips may help on the journey home . If you are about to leave , I hope this will help you travel in a Stress Free , PMR / GCA and Chronic Pain Friendly way.

It's good to remember , that any travel with Chronic Health issues , big or small , is actually often harder on your system than the activity itself. It involves , anxiety , preparation and a lot of ups and downs. In fact , if you look at Spoon Theory , travelling to work or engagements often used up more Spoons than a morning of activity or work .

PAIN and FATIGUE BUSTING PLANNING

So be prepared . Even if you are sitting down , you need to make sure you are comfortable , take breaks if you are on the road and try to find ways to relax as you go. If you have the option to choose the time of day you travel choose a time in the day when you have more energy . If you have the common Chronic Illness mid afternoon slump , that's the time to avoid.

Making sure you don't leave things to the last moment , even if it is just a short bus ride helps reduce Physical Pain. Be ready half an hour before you need to leave the house and take time to have a drink and relax your body before you head off.

If you are taking a bag , or packing for a long journey , do it in small stages over a number of days, with a good list to tick off , well ahead of time . Try to have all your packing and preparation done at least 24 hours before you leave so you have a day of rest to prepare for the rigours of your journey. And don't rush out , or plan an activity as soon as you arrive.

Leave the unpacking and have a lie down for an hour instead , if you are visiting Family prepare them so they know you may need to have this quiet time when youvp arrive. It can make all the difference between you coping well on your holiday or spending most of it trying to catch up on Energy.

Pack your bags as you use your clothes and things , then it means you have little to pack the day before you return , and choose a light relaxing activity for your last day so that you are well rested for the trip home.

POST JOURNEY TIPS

When you get home don't start dashing about unpacking , sorting washing etc. Either get your fellow travellers to do that for you , or wait it day and get your rest instead.

If you are still working or take part in a lot of organised social activities , give yourself a full day or two off before you return to business as usual. It is a regular tale of those that travel or holiday that they feel amazing while away but fall into heap within half a day of getting home. Healthy folks do this too , we have all said , ' Gosh , I could do with a holiday after that holiday ' . The difference is that people without Chronic Illness or not on Steroids can adjust their Adrenaline levels to cope with struggling on until they adjust to the Norm , people with Chronic illnesses can't , which is why they often get hit with a wall of pain 48 hours after getting Home.

Here are some extra practical tips for all sorts of journeys to help you on your pain free way :

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ESSENTIAL HAND LUGGAGE , any journey , for Women and Men

A ziplock see through bag containing your medication ( all of it for your trip or at least four days doseage) , prescription cover , GP and medicine permission letter , summary of your drugs ( generic names) and medical history. This is as important as your passport , keys and tickets!!!

If you use injections you need a cool insulated lunch box style pack with a clear handmade ice pack , or frozen small bottle of water and if going abroad a document from the GP / Air Agency allowing you to take it .

It is also good to include Paracetamol , Antihistamines and Travel Sickness pills ( if allowed ) , a Vicks Vapour inhaler , and insect bite relief .

Phone or device and charger

A small wallet with some of the currency you require for a quick emergency

A small pack of wet wipes , hankies, and a sick bag , mini antibacterial hand wash

A pair of foldable slip on slippers ( men and women)

A microbead neck pillow ,

A large bottle of water and some food and snacks you like to eat ( if you are travelling by plane you will need to pick these up after check in).

1/2 folded small cloth tote bags

Your tickets etc. Of course!

🌍🌍🌏🌏 BEFORE YOU GO 🌏🌏🌍🌍

Check your routes to make sure there are no delays

Tell people at Home and Away your routes and arrival times

Get those people to download a good App to track your progress like Flightaware Flighttrack for free, or have your whole itinerary in an app that organises your plans for you like Tripit.

This means if you do not arrive as scheduled people are prepared , or they know they need to ring you.

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PLANE TRAVEL TIPS

If you can get a lift or taxi to and from the Airport , or make sure your Airport Assistance includes help from the Car Park.

Use Airport Assistance , it's for All.

Book it via your airline or travel agency upto 48 hours before you leave

Check if you need Special documents for medical equipment like injections , oxygen , mobility aids , info from your airline , airport or the Civil Aviation Authority of the Country you visit.

Wear compression leggings or socks under your clothes. Have sunglasses in case you get headaches. Take your shoes or boots off and put slippers on it helps reduce leg pain.

Buy a large bottle of water and some food items before boarding.

Get an aisle seat so you can move about and have more leg room.

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FERRY or CRUISE

The advice for these is just the same as that for planes .

You have upto 48 hours before embarking to book travel assistance via your Agent , Ferry Service or Port.

The same rules for checking about Medications and Special Equipment apply.

Ports however still have an obligation to give you free limited help on the day of arrival.

If you aren't getting a Coach or Driver Support to the Port use a Lift or Taxi from Home or the Station to prevent issues walking from Parking Areas.

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TRAIN TIPS

Take lifts or taxis to stations if you can as most Railway Assistance only begins at the Station door in most Countries.

You can get free Railway Assistance in most Countries but you have upto 24 hours before your journey to book it .

In the UK this can be done by National Rail Enquiries linking you with the first Company on your route , it is their responsibility to tell all links on your journey even if another rail company takes over , number is 08000223720.

Reserve your seats with a table , and use the aisle seat nearer to the doors and a bathroom. You can stretch your legs and walk about . You don't want to be stuck standing on your journey.

Take your food , a bottle of water and a flask of hot drink with you.

You may like taking a nap blanket and a heat pad in a back wrap and a cushion for long journeys , you are having your bags carried by assistance or your family so it's worth it . Use those slippers and remove the shoes on long journeys too.

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CAR TRAVEL

Check oil and water etc. , but also try out your seat , you often want extra leg room for a long journey.

Check for delays and weather reports. Have a potential Plan B route .

Pack some blankets , a large bottle of water as well as hand held ones in your back seat , pack extra sandwiches , you can always eat them in bed later or use them when you get home and you are too tired to cook. If you get in a jam , or in the snow you might need it more than most. Take your shoes off and put those folding slippers on , toe wriggling helps in the Car.

Use a heat pad in a back support and a cushion it relieves lower back and hip pain building up on long journeys.

Plan your break stops , don't take a long one but a number of short ones to stretch your legs , wake up and get fresh supplies if you need it

Have breakdown and Emergency contact numbers handy and a torch .

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Wherever you wander you want to feel as like you are Home.

So travel for comfort not for speed . Rest stops are your new found friend. Stretching is worth it and being as prepared as a Girl Guide ( or Aunty Bee!) Causes far less Stress and Pain making your Christmas or Holiday Break away lots more fun.

Take care on your travels , Bon Voyage , Aunty Bee

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[Yellowbluebell]

Best solution for me is to refuse to travel at christmas. I used to go to my mum and dads with the girls for christmas many years ago and it was horrendous without pmr so cant imagine doing it with it now. Really good tips again bee. Thanksxx

[Blearyeyed in reply to Yellowbluebell]

Yes , I used to dash across the country in a few days , literally between the Wirral and Norfolk then back home again , packing up everything but the kitchen sink to accommodated to children , there is no way I could think of doing that now .

It would be nice if I knew I was going to have a lovely holiday away or a cruise like lots of our lucky forum members are doing though.

Travelling earlier is always good , those jams and disruptions around Christmas seem to happen every year.

Thanks for the reply xx

[Yellowbluebell in reply to Blearyeyed]

My biggest prob was the presents coming home with us. One year it was a large wooden rocking horse my dad made and two doll beds!!

[Blearyeyed in reply to Yellowbluebell]

Blimey , and I thought a bike was bad enough on top of all the New Baby kit we had already had to pack in , it didn't help that we had a Mini Clubman at the time either.

It had a cherry bomb exhaust , instead of that racy bang it seemed to make a deflated fart for whole journey instead . I spent half the time leaning over stuff in all directions trying to wipe the steam off the windows with my sleeve.

There's no way I could do that sort of car contortionism anymore with my hips and knees.😂😂😂😂

[PMRpro Ambassador in reply to Yellowbluebell]

And we went to his parents once - his mother had small shelves above the radiators, you know, toddler stretch height, and filled them with small glass and ceramic things. And had her display of Royal Doulton ladies standing on the hearth around the electric fire in the front room - about 8 of them at least. Dollies! I begged her to put them away when we were there - an emphatic no, the 1 year old who was already walking must be taught not to touch ...

The dash was from Scotland to Cleethorpes - before the motorways. The joys of the A68 in snow!

I had nightmares before and it was a nightmare!

[Blearyeyed in reply to PMRpro]

And we wonder why we ended up with things like PMR after all the crazy punishment we put ourselves through for decades.

I had an Aunt like that , with all her Dresden dog collection around the shelves on the fireplace.

She also caused a serious case of bright orange car sickness for poor Eric on the way home , as the silly woman had given her a glass of pure cordial and Eric had been too polite to mention it and drank it all.

Washing machine going mad , and rewrapping a bunch of presents on Christmas Eve , with the poor OH out on his hands and knees scrubbing out the car by torchlight , oh , those lovely festive memories!😋😂😂😂😘

[PMRpro Ambassador in reply to Blearyeyed]

Suppose the Whirlpool recall will save a lot of people that agony this year!!!

Once we moved to Germany we had the perfect excuse not to traipse home and it broke the pattern! Came back to the UK, had one utterly awful Christmas at ours where MIL expected a 7 and 10 year old to sit and converse all afternoon - when they were used to a burger up the mountain while skiing for xmas dinner! When we had issued an invitation to my mother she had announced she'd decided to do "something different" and had booked a hotel. To be fair, it was her first xmas without her sister "coming home" for over 60 years but I had thought having your granddaughters there for the first time might have been different enough.

[Blearyeyed in reply to PMRpro]

Having both my mother and my MIL the first Christmas with a toddler , I can say I could have happily done without the extra guests. They sat about chatting to each other all Christmas , watching TV and giving orders for drinks and food ( neither was suffering with health issues by the way ) . Me and Mr. Bee wanted to sleep for a week after they left!

They didn't seem to notice an eager toddler about either.

You just made me laugh , I saw the news article on the washers and said to Mr. Bee something very similar , as in , " Well if it didn't cause any damage I wouldn't be complaining if I lost the washer for a week , especially at Christmas , less work for Me!"😋

[PMRpro Ambassador in reply to Blearyeyed]

Sounds a bit familiar! I was back at work and instead of my mother looking after Nat. MIL and daddy said they could manage fine. Between them they managed to change a dirty nappy and get it on back to front - only done at all because she smelt too much for their delicate noses! Never offered again ...

[Blearyeyed in reply to PMRpro]

Sounds like my student friends with Eric's nappy done up with gaffer tape . They also liked doing unusual but child friendly Science experiments with her . But they were more useful than the parents when they did visit.

The MIL left one child in LlanfairPG station shop by a shelf when she got distracted. The said we have a child lost , over the tannoy , everybody there goes to see if it was Grandma , except the MIL !!! who sounded really nonplussed when we searched her out and reminded her she had lost something. Another interesting Christmas escapade , there's another reason to move to Wales!😋😂😂😂

[HeronNS in reply to PMRpro]

All I can remember about the Chrismas my first child was 9 months old, I had my stepmother, mother-in-law and Polish cousin all in their 60s I suppose (and my father and father-in-law but they weren't involved) was being chased out of the kitchen while they insisted on cleaning up and gales of laughter issuing from that room for some time and when I was finally allowed in it was obvious the floor had been rather wet, but no one ever told me what they'd been up to. But the dishes were washed and dried and put away (pre-dishwasher days). I think I have, all things considered, been fortunate in my relatives!

[Blearyeyed in reply to HeronNS]

Yes , unfortunately I was stuck with two Mother figures with absolutely no interest , I've always looked after my Mother more than she looked after Me ever since my Dad passed on when I was 11 . Mr. Bees Mum was always tunnel visioned getting what she wanted done and that was that , so living away from her didn't make a huge difference to Us . Even with my Mum living with us for some years ,we always had to find another person to Babysit , her plans would always miraculously clash with our own.

Luckily , I was blessed with a fabulous Grandma , Nana and Aunt that helped me learn and kept me going.

[Yellowbluebell in reply to PMRpro]

We used to go from sussex to doncaster and often arrived in the frozen north just on time for their village to be cut off because of horrendous snow!! One year we took the quilt with us "just on case" and on another journey from hell had to breast feed my eldest almost all the way there!! I do not envy anyone going away this holiday xx

[PMRpro Ambassador in reply to Yellowbluebell]

I don't understand why they do it?

[Yellowbluebell in reply to PMRpro]

Me neither!! But then again i am.an anti social old bat now!!

[Constance13 in reply to Yellowbluebell]

We know!😂😂

[Blearyeyed in reply to PMRpro]

I understand why the people going away for Christmas breaks and holidays do it , it's the new version of the ' Great Escape' . I would love to do that when I'm up to it.

Finally heard back from Cardiology today , now getting bradycardia and Tachycardia phases , and what looks like Isolated Diastolic Hypotension with Low Pulse Pressure on the tests , they can get me in by the 9 th Jan for an appointment , the message sent by email said be prepared for admission if required.

So that's good news ...

[PMRpro Ambassador in reply to Blearyeyed]

So they can get to the heart of the matter...

I get tachys followed by bradys - or to be more accurate, I did. Now I get tachys followed by a few pacemaker pokes - and I'm sure I feel them!!!

[Blearyeyed in reply to PMRpro]

What do you know about isolated diastolic hypotension and low pulse pressure ( the differentials are at 15 or less for a number of minutes between systolic and diastolic ) then the tachycardia booms to compensate and my blood pressure goes into Bracy phase or swings up and down between hyper and normal for ten minutes until I sit down again , it's getting rather exhausting.

Especially the feeling of being throttled and someone standing on your chest .

Did you feel like that ?

[PMRpro Ambassador in reply to Blearyeyed]

Not a lot!!! I had a few episodes where my BP plummeted suddenly and I felt hot and sweaty and just wanted to fall down. We only found it because I happened to be wearing a 24 BP Holter at the time and it happened at the same time as it was measuring but no-one got excited about it. Then I had these less exciting episodes that felt like a wave passing over, not even necessarily dizzy because they really were brief. It was all quite fleeting so didn't really register. The a/f was also fairly short-lived but I notice it more now than I used - maybe because it is less often. I do just register the tachys that precede it but it is really half a minute or so.

[Blearyeyed in reply to PMRpro]

That all sounds very familiar. The flushing happens through the night with a feeling like I'm going down on a rollercoaster and then I can't catch my breathe.

The dizziness and near fainting had been happening for years when I stood up but now after it passes the head starts fizzing and I get the tremors. On my BP test recently the flushing happened with readings of low 80s over mid 40s , the tremors come when I have 15 or less between my diastolic and systolic readings then the Heart rate jumps over 150 to correct it , the winter nights just fly by here , Roll on January !!

[HeronNS]

You have been working very hard on these tips. Why don't you gather them into a little book and publish them? Part of the PMR library.

[Blearyeyed in reply to HeronNS]

I just thought , what on Earth would you call it , " The Antidote for PMR/ GCA Insomnia" , this book is 100% guaranteed to send you to sleep!😋😂😂😂😂

I'm sure if people have managed to read through my whole advent calendar they should get some sort of Service Medal !!!

Just hoping they have been of a bit of help really , if I can save one person from a day of extra Pain or a Flare that floors them at anytime if the year I will be a happy person.

Hugs to the Heron xxxx

[Pixix]

Thank you! Excellent tips as I plan our first travel since diagnosis! May I ask about ‘GP and medicine permission letter’? When do you need one of those? I was planning to take 4 days worth of medicines in hand luggage (in case baggage gets lost) together with a copy of my repeat prescription and my blue steroid card. Is that not sufficient? I was taking a fair bit of medicine before PMR, & always had Tramadol with me, and haven’t had any issues. However, I don’t wish to run into any! I guess my main change is travelling with plenty of Pred! I don’t have fridge drugs or injectables etc. Appreciate all your help, &, yes, for first time ever I have booked assistance, buggy ride to the gate! Thanks in advance!

[Hidden in reply to Pixix]

Always carry All Meds in their Original Boxes, take your Copy of the Repeat, l always had a ‘To Whom It May Concern’ Letter from my Consultant when l was very unwell, now l have a Copy Letter from my Consultant.

I always keep all my Meds together in a Lock n Lock Box, l’ve been away for 5weeks & no one ever questioned my Med Box.

I have more trouble with Lipstick(s) & Sparkly ‘Things’ trust me l’m every Security Persons - Traveller of The Day 😳

[Pixix in reply to Hidden]

Please can you see my reply to Bleary Eyed to save typing info twice? I will look up Lock n Lock box. I’m not familiar with these. Many thanks for your advice, I appreciate your help.

[Hidden in reply to Pixix]

Just a Plastic Storage Box but it ‘Locks’ on each side making it very secure.

[Blearyeyed in reply to Hidden]

Thanks Angela for your input , it's good to have extra confirmation on these things xx

[Hidden in reply to Blearyeyed]

Bee, it might be worth posting the Meds Restriction List when travelling. l can look it up later when l get back from the hospital.

[Blearyeyed in reply to Hidden]

If that's OK with you and not too much trouble after a hospital trip that would be very kind , but only if you are up to it , good luck today and keep warm xx

[Pixix in reply to Hidden]

Yes, please, I would find that useful, but take care of yourself first!

[Pixix in reply to Hidden]

Sounds good. We travel a lot so it makes sense to get one. Thanks.

[Blearyeyed in reply to Pixix]

Where are you travelling to?

On the whole with a prescription cover letter and steroid book you will be fine , as you have travelled with most of your medications before .

The only addition they had for planes without using special equipment or injections , was to double check that the drugs you take here are allowed in the Country you are visiting .

You can get this information by a quick email to your travel company or looking up restricted medications on the internet , but from what you say you should be alright.

Just remember also to keep your medications in their original packagings , so a properly labelled pill bottle , or in the blister packs and boxes and then fill a daily pill box just for the amount of days you are there.

They like to see original packaging when they check contents.

Have a lovely trip , you've been working very hard and deserve it xx

[Pixix in reply to Blearyeyed]

Um...travelling to the USA. We have been to various States over the past years...about 8 times in past five years, and I used to go twice a year on business, always with prescription meds. But not with steroids...which I realise would affect me badly if I don’t have them, or gave them taken away from me! I planned to take an extra original box of both 5 and 1 mg, but always carry my meds in daily dosett (spelling wrong) boxes, for ease of taking! Not sure if I’ve just been lucky or what! Never had a single issue. Thanks for your advice.

[Hidden in reply to Pixix]

The States are fine, the only place I’ve had to declare any Meds was Australia & they said it wasn’t ‘Our type of Steroids’ they were interested in......

[Pixix in reply to Hidden]

Thanks.

[Meggsy in reply to Hidden]

Probably anabolic steroids 💪💪🏋🏻

[Blearyeyed in reply to Pixix]

It's obviously been ok for you in the past , but the rules say keep it in its original packaging with a doctor's label on it.

As long as you have a prescription cover letter you can do without a doctor's letter as well although they do ask you to check with your travel provider for their rules or the rules of the airport you are travelling to.

Steroids of our type are usually fine for travel to US , but they also suggest that if your drugs come under a brand name ( not just the generic name on the box or prescription) it is good to have a list of the medications you take by generic name just written down in your medicine bag or box , so it's quicker to process you if they do want to inspect things further.

They also suggest that unless you are travelling for longer not to take more than 30 days supply with you .

So , it may be an idea to keep your drugs in all original containers in your luggage and fill your daily dose box when you arrive.

You are used to travel though so you know what you are doing , don't worry xxx

[Pixix in reply to Blearyeyed]

Thanks. Yes, but I may have just been lucky for years, and my previous steroid taking was for short periods and too sick to travel. Plus there’s always new rules to learn! Thanks xx

[Blearyeyed in reply to Pixix]

Sorry it took me a while to say Bonne Voyage again , just writing to days post on doing PMR/ GCA Friendly stuff with the kids ( and Grandads!!!)😋😂😂😂

[PMRpro Ambassador in reply to Pixix]

Where are you going? I take meds in a ziploc bag like the one you use for liquids and chuck it in with that one at security. I've always done that but noticed in Seoul that it was requested there, never seen a notice like that anywhere else. I have never had any trouble at all - even in China. I have a list of what I take on hospital paper but that is normal here, I don't even bother with a prescription usually.

[Meggsy]

Thank you so much for the time and effort you have put into compiling your calendar. I have found it very helpful and taken taken note of lots of your tips. 🌻

[Blearyeyed in reply to Meggsy]

Thank you , hope it helps you over Christmas xxx