My husband and I haven't been away for quite a while now. He could certainly do with a break as he does so much for me. We are both retired now. I just get too scared to even think about a break in case I have a relapse.
Does anyone have any tips for going on holidays/sho... - EDMESH
I haven't been on holiday for a while but I think getting the right accommodation is crucial. That may mean finding somewhere that's relatively easy to travel to, without too many hours of travelling or changes in transport. Also, travel at a time of day when you're not too tired, e.g. avoiding early morning flights if you're not at your best then. If you have any mobility issues, check you won't have to tackle long flights of stairs and so on. And (for me particularly) find somewhere quiet at night - you won't enjoy your break if you can't sleep!
Having a single-centre holiday is probably wiser. The choice of accommodation type may depend on who you're travelling with. Self-catering in a quiet cottage could work well if you have someone to help you shop and cook. You have the opportunity to stay in and rest at any time if you need it. Otherwise, a good quality hotel can take care of your catering and quietude needs, and may have a spa with relaxing treatments - who doesn't like being pampered?
You could also consider a retreat or respite break. The latter may provide nursing care, which may help put your mind at ease when going away. This type of break can be expensive, but you may be able to get funding towards one from your local authority or a charity. Saga provides free respite holidays for carers - read more at saga.co.uk/saga-charitable-...
Action for ME have a useful guide on holidays & respite care, which you can download from actionforme.org.uk/Resource...
See also the edmesh blog post on Holidays - some top tips: edmesh.healthunlocked.com/b...
Hope that this helps and good luck finding a suitable holiday for you both.
Hi MElady, We had this problem a few years back, and the main problem was how anxious it made me, to be thinking of everything that could go wrong. But, we were lucky, as our Daughter arranged a surprise holiday for us, which also included her and the family. We stayed in a self-catering apartment in Spain, and our Daughter & family were right next door! She did all the arrangements, so transport was all sorted out. We had a wonderful time, the warmth of the sun made it less painful in my arthritic joints, and when I had to rest, my husband was able to go out, while one of the family was able to stop nearby, for me. I do think, if it's at all possible, that taking close family or friends is the ideal way to accommodate everyone, and the more the merrier. On our return, it did mean I had to rest for quite some time, but we all felt it was hugely successful, because everyone was catered for and able to enjoy it. Am busy saving now, for a future time, when it might be possible to do it again. As I said before, the main problem we had was the anxiety it provoked, but having done it I can only say it was well worth it. I do hope that whatever you decide to do, will be equally successful. Take Care, Tearsofaclown.
Over the years there are some things I've found helpful :
If flying, use the excellent assisted travel of airlines - you are met at the airport door if
necessary with a wheelchair and cheerful buddy to push it - you go to the top of queues !
At the other end, you are met at the door of the plane and can be wheeled right out to a taxi.
Thankfully, you don't have to explain ME/CFS or fill in any forms. You book it at the time of
booking your holiday or flights.
Hard shell suitcases can be sat on if you are in a queue.
Try to make it door to door travel however you travel - I used to think taxis were a luxury, but
factor in the cost of them if they save you extra walking or waiting - for ME/CFS standing
can be more tiring than slow walking.
We seem to be better in warm sunshine, so that might be ideal. If you can, a self-catering or
hotel with a garden/pool means you can sit out in the fresh air and plan short trips for the
next day, or next again, depending on your energy levels.
If you have a driver with you, brilliant ! You can hire a car and be driven around. This is
ideal as the driver will know your limitations.
My late husband and I used to mix and match on holidays - sometimes going out together,
sometimes he did more energetic things on his own - like climbing to the top of things ! this works well too.
Now I travel alone and the thing is, there is always someone willing to help if I run into any
Plan carefully and I hope you both enjoy a well deserved holiday !
Anticipate the various steps of your break and build in plenty of rests to your timetable. Even a car journey driven by someone else is tiring so recline your seat and get comfortable. I use an ipod to cut out road noise. Whilst out and about or at airports, if weather and environment allow, I stretch out on the grass or a bench, almost anything really, again using my ipod to block the world out. The occasional odd look is worth it for being able to keep going. Even just sitting down frequently, preferably with eyes shut, helps. Sunglasses hide the latter well! On some occasions I've asked to use a First Aid facility to have a brief rest. If travelling by train book actual seats in plenty of time. For accommodation I've found that self catering places work well for me as I can pace myself, eat and rest when I like etc. There are some lovely cottages etc around. Ready meals are so much better quality than they used to be and most places can get deliveries these days. So neither of you need to cook. Make sure theres a dishwasher though! Our last stays were using SACO serviced accommodation and we were very comfortable. If you want hotels then make sure they have restaurants that are available most of the day, throughout the week, so you dont have to go far if you've run out of steam. Make sure the hotel has lifts if they cant put you on a ground floor, and room service availability might help too. If going to a resort ask the management to place you in a room near to the various facilities. Some can have long walks from room to restaurant or pool, which is a nightmare if its hot. Actually I've found most people in the hospitality industry are very helpful if you explain the situation. I don't usually specifically mention ME/CFS, just that I have a medical condition that limits me and requires rests. Finally, always charge your battery before you set out anywhere as well as after, think of it as topping your tank up. So, you're ready to go, all packed... time to have a short nap!
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