Saturday, August 14, 2010

Holidaying with CFS

Sydney: AWatson-Will 

Flying in last month

I am finally home after nearly 3 weeks away. It was an exciting and stimulating interruption to my routine, and it has really raised my spirits significantly.

We are gradually learning that it is possible for us to have holidays and to travel, if we are very careful to keep things flexible and be disciplined about how much we try to pack into the time. Here’s why I think this holiday was our most enjoyable so far.

  1. We spent a little more on accommodation, recognizing that we would need to spend some days just resting there.
  2. Also choosing your accommodation in an appealing area helps – that way even short forays out for coffee or whatever will be more fun. Unfortunately both these make the holiday more costly.
  3. Making sure you take everything you need with you. This seems obvious, but its easy to get to your destination thinking you can just slip out and buy your lactose-free milk or gluten-free cereal there, but if you can’t manage for the first couple of days because you are too tired from travelling, then you will just feel worse.
  4. Of course the biggest adjustment you need to make is how much you can expect to do. How you manage this is quite a personal matter. This time, because I had 10 days, I let the first 4 slide by, just resting up after the trip, exploring fairly locally and then I made a list of what I was interested in. Immediately I could see there were more things than I could manage, so I picked three as absolute must-dos. That’s three in my remaining six days. That felt reasonable to me, although I still knew it wasn’t definite that I’d manage. Still I knew that by focussing on the things I really, really wanted to do, I could leave Sydney and feel like I’d had a good holiday.

Even a holiday in a place like Sydney needs to be at least 50% rest for me, but that still means 50% fun, and that is a lot more fun than I seem to manage in my home environment. The release from the responsibilities of running a house does seem to free up more energy and I’m sure the positive effects will be helpful for a while.

Centrepoint: AWatson-Will

Looks as if we are flying at about the same height as the Centrepoint Tower!


  1. It sounds as if you had a great time, Amanda, and you're right: 50% fun is really good! I'm glad you enjoyed yourself and look forward to seeing what comes out of it

  2. This really resonates with me. When you wrote your post about sick people needing vacations too, I was recovering from a bad medical incident, but I was still determined to take a trip I'd been planning and had really wanted to take. It was a five hour drive to the northern part of the San Francisco Bay Area, which is a scary prospect these days. I thought often of your post-we sick folks need to get away too! And, indeed, it was great to get away to the city, for all the reasons you mentioned.

    I can second what you recommend here. I've also learned that more comfortable, expensive accommodations are not an extravagance. You just need that when rest is so crucial and your lodging is going to be more of a home base than it would be for another kind of traveler. Also, for ridiculously allergic people like me, I find that nicer places are often more willing to try to make the room a little less toxic. It's well worth it.

    In my case, I was driving. So I brought my bags of gluten-free groceries and a cooler for my coconut-based milk. Yes, those essential food supplies...!
    And as for driving, I've learned not to feel apologetic for taking two days to go the distance everyone else does in one, and to stop a lot to rest along the way. It's yet more money and time, and yet another night in a motel, but that's how it goes.

    I'm glad your trip was doable! Thanks for the inspiration.

  3. Thanks Sara - yes more posts about exhibitions coming!

    Hi Chipmunk! I'm really glad this post resonated with you. I ws a little worried about posting it, as I know there are loads of PWCFS who a) are very financially comprimized and b) who would need many days to recover from even a small amount of travel. Nevertheless, I think that if you can manage to just relocate somewhere scenic, even if you then basically sit inside and look out at a beautiful sea or mountain view that is different for you, it may be worthwhile.
    While I often wish I could do more when I am away on holiday, when I get home and look back on the time, I usually find that I have managed much more than is my typical level of activity at home, and it has a good psychological effect.

    I definitely agree with the driving in short bursts - it is great that you managed the 5 hour drive! That must have required a lot of discipline!

  4. That was a five hour drive divided up over two days. I'm not so sure I'd call it discipline, exactly. Maybe more desperation with a touch of foolhardy? Scenic drive though.

    I hope you're still having some pleasant afterglow from your trip! Sydney sounds great, even deducting half for rest.

  5. Hi Amanda
    Something in your post made me want to respond. I went to Ireland at the beginning of June to visit my younger brother. My partner was aprehensive (sp??) about the trip as it was to be our first since my disability became more pronounced and I was taking my rollator ( like a Zimmer frame) with me on the airplane.
    It wasn't as bad as I thought and I was OK...didn't overdo it while we were there. The return trip was of course far easier as we had already done the trip on the way out.

    It encouraged me to know that I could do an air trip providing getting to the airport was relatively straight forward i.e., by car. Of course the other thing is that Edinburgh airport isn't as massive as Heathrow airport in London where I lived previously.

    Take it easy Amanda.
    oh and keep up the good work.

    Best wishes