Travel tips?
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We're heading away this weekend for a stay by the sea with our son for his 18th (sadly also his 8th anniversary with ME/CFS). He's moderate/severe with POTS as well and doesn't travel well. Does anyone have good tips for this? He'll have a pillow, can raise his legs in the car, and is bringing a cooler bottle for water and noise cancelling headphones.
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Whilst unlucky to have ME, I am lucky to have rent free accommodation to a beach side villa on the NSW Central Coast. I recently had a week there with my wife and our three kids. The villa is only 200 metres from the water, and the kids loved playing at the beach.
Whilst there I did daily walks and managed to go twice as far as I normally would without any PEM. I was shocked and pleasantly surprised.
On reflection, I wondered if it was the fresh ocean air (compared to Sydney suburbia), or the lack of tasks to do. On holidays, we just had to eat and sleep. No cleaning, or driving, or organising the kids with school or play dates as I would normally have at home.
Can you relate? Is it the fresh air or lack of responsibility that was the difference?
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@Jop I have asked myself the exact same question so many times over the years. When my kids were young, we also used to have many beach holidays. I had a similar experience to you. My health and energy levels were so much better than at home in Melbourne. At one stage, I was quite convinced that swimming in sea water was the panacea! But the improvements never lasted after the return home.
We finally concluded that it was the holiday lifestyle that caused the improvement. My husband used to take over all the chores while we were away and my brain stopped the continuous planning and coordination that is involved with organising a young family.
Though the fresh air has got to be a plus too.
(We visited a few different parts of the Central Coast - It's such a beautiful area!)
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How lovely that you had such a wonderful holiday, @Jop! It’s such a rare thing for us!
It’s so hard to know which factors played the biggest part, isn’t it? I guess one way to tell would be to try to arrange a couple of days without so many responsibilities, and without going to the beach. Not easy to do, but could help make it clearer?
If it was the sea air, I know I’d be wanting to pack up and move there! But if it’s not, that’s useful to know too.
Personally, I really notice the difference with the level of responsibility I have to carry, so I imagine that plays at least some part in how much better you felt. But that’s hard to sit with, knowing that there’s probably not much you can do to ease that load.
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I have had this situation many times where I've gone on holidays and thought its going to knock me out, but the opposite happens. It could be a number of factors including more sunshine and vitamin D which is often a boost to our systems, less indoor/outdoor pollution triggering things. But also its likely the change of scenery and getting out from the four walls of home and all its sameness and chores/commitments, creates a minor sense of euphoria, and frees us from your everyday stressors that contribute in small ways to our ongoing condition.
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It's great to hear holidays helping people
I think a big issue will be how the holiday experience interacts with the 'sustainable capacity for activity' (ie, not triggering PEM), as well as any sensitivities and allergies. I can get PEM from a relatively short walk (and that can be even if the walk is my main physical activity for the day), and have both traditional allergies and MCS, which makes travelling all sorts of complicated.This makes organising a trip very difficult (not actually achieved for a 'get away from it all holiday' at my current level of ME/CFS, although I have visited family in recent years), and it requires significant 'extra rest' beforehand, and there's always PEM to contend with both during the trip, and usually about a couple of weeks afterwards. I'm very partial to my family and will happily travel for them as much as I can manage (about once a year), but the cost of going anywhere is such that if it's a case of doing something just for me, I'm far better off with a quiet patch at home if health is what I'm trying to maximise.
That being said, while the experience isn't great in terms of ME/CFS management (it's manageable, but needs lots of recovery), it's always a good experience emotionally :).
More broadly, I imagine that where holidays fall on the "helpful" scale will depend a lot on the severity of the illness and the availability of resources, and be a very individual thing.
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It sounds like you're well prepared. Do you have any electrolyte drinks or salty snacks? I find barbecue shapes (the arnotts ones) a life saver, they have literally stopped me from passing out during car trips.
Pronouns: they/them - ME/CFS since 2017
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@river Good idea, cheers
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I hope the weekend went well! It sounds like you were well prepared.
I carry a kit with chips (for salt), barley sugars, a range of painkillers, headphones and water for car trips. I try to keep my eyes closed to reduce visual stimulation. I have found that I experience less payback (PEM) if the ride is the smoother. Vibration seems to play a part for me. If I can keep the journey to less than 2 hours, I suffer less payback too.
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@JennyM Cheers! It's this coming weekend - cooler at least, which will help though any beach type plans are shot. Thankfully it's just a 2 hour drive but I'm hoping he doesn't spent the entire time recovering from the trip there (though he will have his own room, big bed and an ocean view if he has to, we're going fancy!)
Emerge Australia Communications Director; mum/carer to 18yo son with ME/CFS
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@Jen_Em_Aus Crossing fingers and toes that he has a lovely time (and so do the rest of you!). Looking forward to hearing how it goes!
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@Jen_Em_Aus hoping you all have a wonderful weekend away with no payback for your son.
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Hi Joe. You’ve nailed it.
I just had a week at Beechworth in Vic. All I did was walk into town. Have coffee. Sleep. Read the paper and then organise dinner.
Very relaxing and felt great for the whole week.
Even managed some good exercise which was fantastic. Paid for it a couple of days later but the high when doing it was worth it.
I’m trying to make sure I book some holidays in advance now so I have something to look forward to.
All the best -
Thanks all! We had a brilliant weekend. Son took it very easy and paced cautiously, but went for a few short wanders (we were staying right on the beach). He was very mumbly by the time we got home last night, always a worry, but he’s ok today - just a little quiet but very happy and well pleased with himself for managing. It did a lot for his confidence so we’re thrilled.
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Personally, I find that the sea air helps a lot with allergies and is relaxing as I once lived near the beach in Glenelg North, a suburb in Adelaide, South Australia. I never got hay fever but always had a head cold/flu in winter as it was always windy, wet and damp. I enjoy it when I am out and about but the pay back in fatigue and not being able to do much for at least a week or so just about kills me. A weekend away or a day out doing an hour or two shopping and I am completely exhausted for several days. I get to the point where I will not get out of the car and walk anymore and much to others disgust sleep across the back seat. I just can't keep going. I am a pain in the rear end in the shops. You will always find me sitting in the middle benches of the walkways and or in a coffee shop having a drink more than shopping. But in saying that, we all need a break from time to time to clear the mind and to get away from everything. And a little bit of retail therapy on occasion doesn't hurt either as long as it is within your limits.
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I find just bobbing about in the surf as long as the waves are low and the water isn't too cold really helps my muscles relax. However if I am seeing family it is hard to pace myself. I hate saying no to them as I don't see them very often so I find myself stressing about the holiday before I go.
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@Jop just relating my own experience, and that also there is some anecdotal evidence that suggests, that stressful life events can not only trigger ME but exacerbate it, so maybe the lack of day to day stress would be a big part of what you are experiencing as an improvement of symptoms while you’re on holiday. Many of us are in a constant state of stress not even knowing it and, let’s face it, just having ME is stressful. And our ME bodies don’t handle stress in a normal way, they overreact to it and then cannot switch it off easily and that has to be a huge source of energy drain and a nasty self perpetuating cycle. I’ve found that managing stress levels, with meditation, progressive relaxation and creative hobbies, has been one of the most effective treatments I found, for reducing my pain in particular. Anyway, anything that reduces stress has to be hugely helpful. There’s also a thing with the negative ions generated by the waves at the beach. Read up on negative ions and health. I know that being at the beach is hugely mood lifting for me. So there might be something to it
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