To vacation or not -- afraid of crashing

[sueami]

I am wondering about how vacation travel has affected others' health.

I am 4 1/2 years into a viral-induced, more time spent feeling normal than sick disease process. In January I crashed and haven't pulled out of it, which is new for me. Crashes used to only last a week or so and only happened in the winter/early spring time-frame. I can't walk more than 15-20 paces without feeling winded and a little sick feeling now in the mornings (I have more stamina later in the day).

For the third year in a row, my parents, who love to travel but are nervous about travelling alone, are taking my sister, her boys and my family of four to Europe.

I am absolutely dreading having to navigate an airport under a time crunch and the sleep disturbance that comes with a red-eye flight.

I'm also afraid that I will precipitate a worse crash.

But we are going to spend a week on Mallorca and four days in Barcelona and I wonder if sometimes vacation travel can be restorative for some people with fatigue symptoms.

looking for some feedback and personal experiences here,

Sue

 

[minkeygirl]

I don't travel but I have a friend who is for the most part pretty functional who is virtually symptomless when he travels. I'm talking a week walking around Austria and sight seeing in Italy.

If he crash when he gets home it's not for long.

I think, and this is just my opinion, that how you are feeling when you start, is a big indicator of how it'll be when you are home.

I think if we could snap our fingers and just be there it would be great but like you say, the airport and all that would be very hard, especially if you are the one having to do all the navigating.

 

[manna]

http://articles.mercola.com/sites/articles/archive/2011/03/31/how-not-to-get-sick-from-a-flight.aspx

mercola's tips for flying, if you do. im sure he used to recommend asking for body searches instead of those metal detector machines. one thing i would do when i got there, when i could, would be to lie on the ground for a few hours--grass/earth or sand. said to help with jetlag and generally beneficial. maybe flower essences before and during the flight. of course most, including myself, would avoid vaccines, if they're even needed that is.

if being in close proximity to your extended family is not something you do often then i would make clear upfront what cannot be expected of you. they may not be used to living with it daily. i did one holiday with fam, pre mcs, but was expected to be normal and it didn't help. have fun if you do go.

 

[justy]

I had a severe relapse into only 25% functioning 6 years ago and for the last 3 years, although still mainly housebound I have been able to travel a bit.

This is what I do:

I don't fly, but then I live in Europe, so we drive.

I have a wheelchair - I could not spend a half day out without it. With my wheelchair I have been to museums, to the Alhambra in Spain, to the Dali museum in Figueres, and had a great, but exhausting time. I still have to pace ruthlessly. Every time I get home i crash for a few weeks.

I never go out more than once in a day - so a museum or shopping trip by wheelchair but not dinner as well. Or all day resting and then out for dinner. Every few days I spend ALL DAY AND NIGHT IN BED.

I take Valium for travelling and for day trips out that will be gruelling. It calms down mu CNS and makes noise and light sensitivity etc. less. I take a tiny dose and never take it for more than 3 days in a row.

I always have snacks and coconut water with me, so I can eat whenever I need to. I carry a wrap/shawl thing with me so if I get cold I can rap up warm. I always have my sunglasses and hat, in-case it gets hot.

We never stay in hotels. That way I can make food or have it made for me whenever I like, there is no pressure to be with other people or in a restaurant or whatever.

Now lets talk about Barcelona - we went last Christmas and had a great time - only went for a few days. saw some great things, got take home pizza as I couldn't cope with eating out as well.
Barcelona is the MOST full on city I have ever been to. It is NOISY. it is SMELLY. in the summer it is HOT. it is incredibly CROWDED. the queues for everything are enormously long - once again wheelchair saved the day. I have never been anywhere like it in my life! I would never go in the summer unless we were staying by the sea.

I have been ill off and on for most of my adult life with this DD and I may never get better (not showing any signs currently of a miraculous recovery) so I refuse to not go away. But it is a mission and it is hard for the whole family. Your family need to know exactly what can and cant be expected of you. They need to know that 'I cant come today' means 'I want to but I cant' they need to be nice to you and take care of you. Otherwise it could be really hard.

We are going to south west France for 10 days this summer and had a month in Spain last winter. We will drive and stay in a great 5 star French campsite with trailer homes and a pool and a shop etc. I will probably spend a lot of time laying around, and some time sight seeing. I will not be able to swim in the pool, but will watch my children and husband do so. When I get home I will be more ill. That's just the way it is for me, but I am so grateful I can go and I am making the most of what functioning and life I do have!!

All the best
Justy

 

[sueami]

Okay, I'm really happy for all this feedback. I'm going to talk with my doc about it this afternoon, but I'm leaning towards going, particularly as I'm not sure the kids will want to go without me. I do need to be very clear with my parents about what I can and can't do. They don't have the full picture of my health right now, mostly b/c my mom goes completely overboard on health problems and doesn't share my wellness philosophies. (And yes, I can see several sources of stress that I would do well to explore in that statement.) But I'll have to be blunt with them.

Manna, thanks for that link. I've been thinking about astaxanthin for a little while now, ever since some brilliant member (whose identity is lost to brain fog) posted a chart of antioxidants that cross the BBB and their half-lives. I will start on it now, as my trip is still 3 1/2 weeks away.

many thanks to all,

Sue

 

[Seven7]

1) HYDRATE: extra hydration during flights will help you to go thoruhg it, and I mean cocunut water, pedialyte or any electrolite drink + water. When I travel I bring the powder so I can pass by security with it.
2) Use assitance so you do not need to run in between flights. I personally prefer to put time between flights and I DO NOT RUN or go aerobic and take my time and rest in between. Laydown every single time you are waiting.
3) Buy food when convinient so you don't have to rush in the next stop to do so.
4) Use comrpession clothing, it does help a lot, I do pants from bikers and socks.
5) I ussually up the florinef by half pill when traveling. I am religious with the midodrine to avoid crash and be able to lay down when needed.
6) Pack earplugs, sleep mask, travel pillow. Do not be shy to use benadryl in long flight to adjust to hours. I dress smartly so I can use jacket as blanket to sleep.

I am quite in the active side and Europe is the one trip I am holding off on. Good luck

 

[justy]

Hi Sue, I noticed you wondered if travel is restorative for some. For me it is not physically restorative - it always brings a worsening of functioning afterwards for a short while. BUT it is profoundly emotionally and psychologically restorative and is great for my kids.

My youngest of 4 is 11 and I have been housebound since she was 5 so she doesn't remember her mum any other way sadly. Going on holiday with them is so great for her, as she often has to do things without me - although my illness does restrict us when we are away, we make the most of it and these days I think my husband enjoys the rest after all the driving - although when we went to Spain he had some days out alone hiking in the mountains as well as a couple of days out just with the kids while I rested.

Good luck with the trip!

 

[ukxmrv]

Hi Sue, I don't find travel at all restorative and have never felt noticeably well on holiday. There are some patients who do report that they are better off when they travel but for me it's always led to a downturn in my health. I emotional and physically enjoy being around the sea but the travel involved getting there and back really knocks me.

The sea is good for me in that immerses myself in cold, salty water really helps wtih symptoms. Also if I am staying at a resort the break from having to do housework and the quick access to food is a bonus - meaning that I have more strength to be able to sit in a restaurant.

I'm not sure about travel being restorative for fatigue symptoms as I don't look at my illness that way - it's more of an immune thing for me.

Some comments that I hope are helpful. Travelling in a group like that could be really stressful as children can be hard work on planes and in airports. I don't have any experience but others may be able to advise.

I've found in Europe that the wheelchair assistance can be very good. You could ask the airline to arrange a wheelchair and that could take you from check-in to the plane and then from the plane to a taxi at the other end or to the arrivals hall. That means, usually, no queuing for passport control. There are often porters to help with baggage and the wheelchair pusher can often help arrange this.

I'm not sure how travelling as a group though would fit in with this as you may need to arrive earlier and to be separated from the rest of the group when the wheelchair is being pushed. With children the airline may be able to arrange a golf cart instead. Then ask for early boarding on the plan for yourself as a disabled person and the children. This allows you to get settled first.

My personal experience is that I almost enjoy the jetlag part of travel as I can be on the same timezone as my companions, at least for a few days. As I almost always feel crap anyway I don't mind jetlag but that is not the same for me, as PEM for travel. The PEM is the killer.

I tend to plan my holidays with everything considered for a crash and then if I can actually get out of a resort once I get there it is a bonus. Doesn't tend to happen though (the bonus part) sadly. That means I need to pick the right place as the hotel may be all I get to see on holiday.

 

[taniaaust1]

For me, any kind of travel isnt at all restorative but tiring and puts me at risk of a crash. There is the occassional person thou who does get improvement going away and not being in their home (maybe from getting away from environmental issues eg molds or from a change of diet).

 

[Valentijn]

When I traveled with one other person, they took us through the disabled route together, even though he's able-bodied.

 

[sueami]

Still appreciating all the feedback, thank you everyone.

Another, perhaps mundane question: How do you pack your supplements for travel? Do you sort out what you would take morning and evenings a la those m-t-w-th-f-sa-su pill containers (which I'm not sure would fit the number of supplements I take). Do you just bring the bottles they come in, regardless of how full they are or glass vs/ plastic? Or have you found a good set of pill containers that are roomy enough to contain a two-week supply of each of your supps?

 

[Sushi]

T

Still appreciating all the feedback, thank you everyone.

Another, perhaps mundane question: How do you pack your supplements for travel? Do you sort out what you would take morning and evenings a la those m-t-w-th-f-sa-su pill containers (which I'm not sure would fit the number of supplements I take). Do you just bring the bottles they come in, regardless of how full they are or glass vs/ plastic? Or have you found a good set of pill containers that are roomy enough to contain a two-week supply of each of your supps?

The bottles take a lot of room but are the easiest and probably safest for customs. But I usually take a chance with customs and either use small zip lock bags for each dosing section--like breakfast, lunch, dinner, whenever--though those would be a lot of bags for 2 weeks. Or else put enough of each supplement in a separate zip lock and "dip in" for each meal.

Best,
Sushi

 

[Seven7]

You are supposed to keep stuff in bottles BUT i never follow that I mix them (not that I advice anybody to do so) I just mix the very obvious ones where people can taste: Vit C, Fish oil... SO if I ever get in trouble they are easy to identify and then put them in bottles with the less obvious like Lcartinine mixed with fish oil....

 

[xchocoholic]

I get small plastic bottles from the local pharmacy and if possible put certain supplements together. They were free the last time I did this.

If you're prone to digestive problems be sure to bring plenty of whatever you would use at home. I actually carry liquid pepto bismol with me in a tiny glass bottle, old vanilla extract bottle, because it works great for me.

I've flown multiple times since getting sick and typically feel great for the first few days providing I rested up prior to travelling, ate well on the trip and used wheelchair service at the airport.

Taking a tiny bit of Klonopin if I'm feeling overwhelmed helps too.

Hope you have a great vacation. Tc .. x

Ps. I haven't gone thru customs yet tho. So I'm not sure if they'd be ok with my pill bottles with homemade labels.

 

[ukxmrv]

I know what most of my supplements look like so I just split them into morning, noon and night bottles. Anything that isn't legal in the country I am visiting I put into another bottle. I keep a copy of my prescription with my prescription medicines.

There were still restrictions on travelling with liquids in hand luggage last time I traveled in Europe.

*snip from uk govt website* https://www.gov.uk/hand-luggage-restrictions/overview

If you do take liquids in your hand luggage:

containers must hold no more than 100ml
containers should be in a single, transparent, resealable plastic bag, which holds no more than a litre and measures approximately 20cm x 20cm
contents must fit comfortably inside the bag so it can be sealed
the bag must not be knotted or tied at the top
you’re limited to 1 plastic bag per person
you must show the bag at the airport security point
Liquids in containers larger than 100ml generally can’t go through security even if the container is only part full. There are some exemptions.

Exemptions

You can take liquid containers larger than 100ml through security if they:

are for essential medical purposes
are for special dietary requirements
contain baby food or baby milk

 

[soxfan]

For some reason on vacations I feel pretty good. We usually go to Maui which is about an 13 hour flight not including airport time. The first day after arriving I basically do nothing but rest. My sleep is usually messed up for a few nights. Afterwards I can just about do anything I want from hiking to snorkeling. I never overdo and I always rest in the afternoons just like I do when at home.

We rarely go out to dinner and mostly cook on the grills at the condo. I don't do anything at night because I haven't been able to in a long time.
I seem to sleep better and wake up feeling more refreshed on vacations.

As for airplane travel...I wear compression socks on the flight. I take a baby aspirin and I drink a lot of water before the flight and during. I also take .050 mg of Klonopin just so my nervous system stays somewhat calm during all the airport changes.

For years I was afraid to travel because I was sure I would end up laying in the hotel bed the entire time but then took a chance and went. I even traveled with all my IV equipment as I was on Rocephin during one of the trips. We are going to Maui again this September and although I am having a rough summer I am still going to go and hope for the best.

 

[sueami]

What does the baby aspirin do for you, @soxfan ?

I'm going to find some compression socks, as several folks mentioned that.

My physician linked this video to me on combating jet lag and I'm going to give it a try, along with earthing once I get there and I've just started astaxanthin, which Mercola recommends as an antioxidant that will ward off damage from the radiation on the plane trip (great. just one more thing to worry about that would never have occurred to me. LoL)

http://articles.mercola.com/sites/articles/archive/2008/10/25/ancient-trick-eliminates-jet-lag.aspx

I tried to verify the claim that this sort of meridian/channel work might work. Someone's selling a meridian stimulating product/protocol that probably relates to this practice, but I'm not going to buy it to find out. It's harmless enough that I'll give it a try, if I'm up at 3 am on the plane, which I hope not to be!

 

[Sushi]

@sueami

I think the baby aspirin (and the compression socks) are related to the extra risk of blood clots on long flights. I use it too.

Sushi

 

[manna]

i like the idea, from the mercola vid, of stimulating your heart meridian, in the country you arrive in at 11 a.m. the new time. the heart meridian's high/repair phase is 11-1 p.m. I might do some meridian tapping on the flight too (not eft). some people might wear a scalar device for energetic protection and to, supposedly, aid in aclimatisation etc.

 

[Misfit Toy]

I think it depends on so many factors. If you are with understanding people. If you are going somewhere where the weather is okay for travel...not too hot, or too cold. How sick are you when you go?

I went to Punta Cana last year and had to fly home on emergency. I was alone. Why? Because I am single and the people in my life have no understanding of this and I can't or don't feel comfy with well people on vacation. Sometimes I am so exhausted that I will have a breakdown or meltdown and they look at me like I am crazy. I can't keep up.

Anyway, in Punta, the hotel was huge with too much walking and they had my room right next to the lobby and had no extra rooms so all I heard was noise and music 24/7. I never realized or thought about those things.

I am much more sensitive now and don't sleep so it was a huge blow. I couldn't take it. Now, I am only willing to go a few hours away and be able to leave if I need to. I want a quiet hotel and somewhere where there is food and things I need, if need be.

If I had a husband and help, it would make life so much easier. A good husband. a caring and understanding one.