Getaway for the Me/CFS/Disabled?

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Nov 9, 2009.

  1. Elisa

    Elisa Member

    Hi all,

    I am wondering if there is a place people who are very sick with ME/CFS/FM can go to "get away" - dedicated to our needs.

    I am mostly housebound (and hate feeling like a prisoner of my home, body and situation) but am living with circumstances from family that are making me even worse. So I am just wondering what are the options?

    I probably would have a tough time even getting to a place 10 minutes away - but why not explore the possibilities. I can dream...right?

    I'm in Ohio...

    God Bless,


  2. AuntTammie

    AuntTammie New Member

    it would have to include someone who would come and pack for us, get us there, and then accommodate our needs while there

    I so know what you mean, brother lives in Fl with his family and my parents are spending the winter months there, too.....they have all been pretty much begging me to go for some or all of the time my parents are there, and I would love love love to do so, but there is just no way I can do it.

    I went last yr for a little over a week and I was in a lot better shape at that time than I am now and it still totally did me in - it was worth it and was the first vacation I have had in a lot of yrs, and I felt better while I was there than I do here during the winter months, but even though I did very little and rested a lot, I still crashed badly for a good 6 weeks after, and this entire yr has been one giant downwards progression.

    Still it is killing me that I can't go (and that I will be alone for the holidays and that my brother says the only Christmas present he wants is for me to be there.....nice that he wants me there, but already sucks enough that I can't go w/o the added pressure from him.....and I have no idea what he is telling my nieces as to why I cannot be there - I want them to really know that I do want to be there)

    anyway, sorry I sort of went off on a tangent from your post.....just wanted to say that I understand the desire to get away and the fact that we are too exhausted/sick/etc to even be able to take a vacation

    actually, you would think that this would offer further proof to people that we are not just saying we are sick to get out of stuff......people take vacations to relax, rejuvenate, and have fun, and that is too taxing for us - how insane is that?!
  3. FibroFay

    FibroFay New Member

    Hi there. I would like to know this too. It's almost impossible for me to even get to my grandkids Christmas presentations at their schools, and I cannot get to church any longer. I would love to know how to get away from all this stress and sickness, even for just a little while.

    AuntTammie, I know how badly you want the children to understand why you cannot be there with them. My own daughters have had the attitude over the years that I just don't want to go to things, more a choice than my circumstances. I'm hoping that as my grandchildren grow and begin to arrive at their own decisions, they will be more understanding about my illness. After all, we are all more knowledgeable about these illnesses than we used to be. So, time is on our side and the children will come to understand. But, I totally understand how you don't want to let the little ones down. Me too. This is so heartbreaking.

    Back to our desire for a vacation. Maybe for some, an arm chair vacation would be helpful. There are lots of travalogue videos and DVDs available. But, I'd like a change of atmosphere sometimes.

    I'll be following this thread for ideas. Thank you for starting this thread!

    [This Message was Edited on 11/10/2009]
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, I know this is out of the range of what you are talking about, but Baja Mexico is good. They have a very progressive center there that treats CFS.

    Weather is good too.

    In reality though, if you just need to get away, why not get away in your own city. Most people don't think of their own town in a vacation way, but others may come to their town for vacation.

    Get yourself a hotel room, if you can afford it. Get away from the constant reminders of what you can't do, like clean your house. Have room service. Enjoy the hotel's amenities.

  5. AuntTammie

    AuntTammie New Member

    thanks for your response.....and I am sorry that you have had to go thru similar stuff....I hope that your grandchildren do begin to understand someday

    I like the travelogue idea, but yeah, actually getting away would be sooooooo nice.....still, travelogue + turning up the heat & wearing shorts + summery vacation music (Beach Boys, Jimmy Buffet, or reggae, perhaps) or a CD with the sounds of waves + coconut scented lotion (if it doesn't bother your MCS - this is pretty much the only scent I can actually tolerate anymore and it's a happy scent) - all that would be nice......if only there were a way to bring some sand and ocean water inside! I have taken window markers and drawn a palm tree on my sliding glass door before (kinda funny with snow all around outside and the marker tree standing out against it).....and even that helped give me a little boost. Unfortunately I cannot find those markers anymore.
  6. AuntTammie

    AuntTammie New Member

    I like your idea, too.....unfortunately I wouldn't be able to do it for a few reasons, but it is a nice suggestion that maybe some will be able to do.
  7. AuntTammie

    AuntTammie New Member

    and of the problems I would have with this is financial, but I started thinking that maybe I could ask for one night in a hotel for Christmas - the problem is that I cannot function in the morning, no matter what, and hotels require checkout too now I am wondering if there is any hotel out there that would let me stay later for a small fee, but not charge for another entire night.....there is one that was advertising a lot about disability accommodations and that IS a part of my disability....somehow I highly doubt that they will care about that, though

    there are quite a few other issues with staying in a hotel, too, but some might be manageable, but anyway, now I am wondering if anyone ever had something like this come up and actually had a hotel somehow accommodate their needs
  8. FibroFay

    FibroFay New Member

    There are some real nice coconut scented shampoos and conditioners available for hair care, if you like coconut. They can be fun to use.

    My youngest daughter had a artificial palm tree with Christmas lights on it for her Christmas tree one year. She found it it a catalogue that came in the mail. Wasn't very expensive, but I don't remember the exact price. (maybe around 30.00) She loves Fla. and wanted a tropical Christmas.

  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, a one night stay would not be good for me. It would do me a lot of harm. If I go somewhere, I need to have at least three nights. Travel on one day (even if it is in my city). Rest on the next. Enjoy the place the next day. And travel the next day. And of course, I will have to rest on the day I get back.

  10. rockgor

    rockgor Well-Known Member

    Being a prisoner when we didn't commit a crime seems a bit unfair,
    doesn't it. Tina's idea sounds like a good one if the cost isn't too high.

    Aunt Tammie, I think you would have to deal w/ a locally owned hotel to
    get a discount rate for staying late. A chain would just tell you headquarters
    won't allow it.

    I can hardly believe hotel/motel rates today. 40 years ago I traveled cross
    country. A nice motel was $6-8. Motel 6 really did charge $6. If there was
    a second person, they added a dollar.

    Anyway, I have CFS rather than Fibro. My big problems are lack of energy
    and insomnia. Generally awake all night.

    But I went on a wonderful vacation a year ago. Went to Tombstone, AZ. The
    city has been preserved. Pretty much the was it was in the 1880s when
    Wyatt Earp and Bat Masterson were there.

    My partner made the flight arrangements and drove the car from Tucson.
    I felt 100% better as soon as I saw the scenery. You could see the horizon
    in any direction. The sky was blue. There were dramatic cumulus clouds.

    It was breathtaking. (My partner, on the other hand, thought it looked desolate.)

    BTW, Elisabeth. I've been to Ohio. Went to Orrville and toured the Smuckers

    Note to history buffs: History is sometimes just around the corner. When my
    dad was young, lots of figures from the Old West were still alive: Wyatt
    Earp, Bat Masterson, Frank James, Annie Oakley, Mark Twain, and lots more.

    Bon voyage
  11. AuntTammie

    AuntTammie New Member

    I am with you in that a one nt stay would certainly not be my ideal.....but if it were a place close enough to home and I packed really light, I could probably manage it, and then come home and rest more.....but financially I cannot even afford one nt, so like I said it would have to be a Christmas present.....and if that were somehow extended to more than one night, I would still have the same problem on the last night - no way could I be up and out of a hotel by 11 or unless the hotel were willing to work something out with me, I would wind up having to pay for an entire extra night when I would still be leaving before that night - I would be able to be out of there by around 3PM, so paying for a whole extra night to only use 3 hrs of it is crazy
  12. AuntTammie

    AuntTammie New Member

    You are most likely rt about the hotel thing......still I think that I will try to look into it.....I mean what do I have to lose after all? : )
  13. AuntTammie

    AuntTammie New Member

    I like the palm tree with lights idea....unfortunately my cat would make sure that any kind of tree would not stay standing for long.....hence the window markers

    do you know of any of the coconut conditioner brands offhand? shampoo is pretty much out bc I have to use dandruff stuff (& I have a hard enough time finding some that works w/o triggering my MCS)....but conditioner would be great
  14. Elisa

    Elisa Member

    Hi All,

    Thank you so have great ideas.

    Maybe I can even vacation in my own home - with a travelogue - any suggestions - someplace sunny and beautiful - maybe Greece.

    I am so grateful for all your ideas. I so need to get away - from myself - I guess too - just so darn frustrated. The kind where everthing bothers you - like my house and everything in it - you know?

    I wish I didn't wish to be well so much - does that make sense? I think that's where the frustration comes from. That's why the notion of a getaway is appealing - to take my mind on a vacation (my body rather not go, ha ha)

    God Bless,

  15. FibroFay

    FibroFay New Member

    Suave makes a nice coconut conditioner and it's not expensive. There's a shampoo to match, but you could just use the conditioner. It's found in most dept. stores, drugstores, or even your grocery store.

    Have fun!

  16. AuntTammie

    AuntTammie New Member

  17. denis321

    denis321 New Member

    I enjoy traveling but can't do much of it anymore, except via TV and books. Here are some ideas I've thought about:

    1. Pick a region or country. Have your family/ friends get takeout from a restaurant specializing in that cuisine, check out a travelogue video/ music/ movie that takes place in that area from the library. Learn a few foreign phrases. (A virtual traveling experience)

    2. Stay at a bed and breakfast near where you are. This is a bit pricy but because B and Bs are individually owned, you can negotiate price and time of checkout (esp. weekdays). Some B and Bs have spas, a nice view, great breakfasts where they cater to your tastes, board games to play, etc.

    3. Check out Hostelling International website. Hostelling is not all for young backpackers - there are some which are located in terrific areas all over the US and some are inexpensive. There are hostels in light houses along both coasts. Many are cheap and some have private rooms. Some have kitchens.

    4. Google for stays in religious retreats. Monks (of Catholic and Buddhist traditions) still exist and a tradition is to host travellers often for cheap and sometimes for a donation. Many are located in peaceful areas; some, in cities. They have certain rules like curfews, may serve meals. For many places, you do not need to be of that religion or participate in any religious ceremonies unless you want to.

    5. Respite care in nursing homes or assisted living for a few days but can be pricy and older crowd.
    [This Message was Edited on 11/12/2009]