Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 24, 2013.
Uh, I didn't try to find them.... Guess they just "hissed" by me...
Rats Ha ha ha
K2, guess who is looking for you!
You all look so healthy and happy in the photos - which is exactly the problem. Some of the people you saw in San Antonio may have already had ME.
It takes us to understand us. It is so good to read about some of us getting together. No one else would include several days of sleep on a trip itinerary.
Gave me a fright when i opened this post
If anyone ever wants to come and visit Australia and do the couch surfing thing.. im open to having someone at my place for a while and would love to go to Kangaroo Island (one of my favourite places) again with someone.
I love hearing about things like this, what a fab trip and well done! I did a similar thing 10 years ago and met ME folks in various parts.of australia and new zealand. It was amazing to travel to the opposite side of the planet and meet up with our own kind. Watch out tania as i plan to do it again one day ;-) it was so great reading this post. Well done!
This was meant to uplift spirits as I believe Adin is now on oxygen 24/7 and wouldn't be able to go through something like this right now.
You are correct. We LOOK healthy and happy, but what would have been a 2 week trip turned into almost a month due to the need of constantly having to check up on malaise. We all had to take lots of "down" time to achieve it and I don't know how normal people, who don't understand that, would feel about it. "Oh, I have to sleep and rest for a couple days before I can move again, OK?"
And, I think Adin will cry now when he sees the pic of him playing with the kids. It didn't last long (maybe 10 mins?) and I think he slept for a couple hours afterwards. I know his heart rate jumped way too high.
Australia has ALWAYS been on my "bucket list", but I really don't know how I would do that. This trip was kind of a "test" to see what the effects were going to be afterwards. But, when I win the lottery, Australia will be back on, and couch surfing would definitely be on the itinerary. Maybe Kangaroo Island could be done REAL SLOWLY....
Tania, watch out! You may find Hell...Hath...No...Fury at your doorstep one day! (Ask for a week's notice, so you can get dressed!)
Sushi, I am really glad you didn't show me this while we were there.... It may have scared me out of coming!
You notice I was wearing boots!
Great piece, Karen, thank you. Always good to hear aboutpeople with this illness managing to haveadventuresdespite everything, even better when you can meet up with others on this forum. There are a lot of people here I would like to meet up with.
Anything done with me would be done real slowly. I'd probably worry about holding the other person up. i dont require all that much recovery time with things..usually resting till the next day will do the trick (thou I certainly understand days to recover from something from when I used to be sicker)..but with me currently.. only small amounts can be ever done at once (lots of rest breaks, if walking from one end of a big shopping centre to another.. I often require to sit and rest on that walk.. had to do that yesterday) or I get "extreme" symptoms flare (cant then stand at all) and I know none of you would be able to carry me!!! so I'd have to be careful.
Laying on the beach.. or just tenting in one place watching wildlife and enjoying natural scenery.. are the things which I most easily could do. No mountain climbing lol. I'd like to go on one of those big cruises one day.. umm maybe that is something a group of ME/CFSers could do together easily (once we get to the boat!) ? That would be so fun. Anyone up to saving and one day going on a cruise with a group of other ME/CFS people?
Hi Karen..........great that you could manage this...........wish I would have known...........I would have loved to meet other cfsers from PR............I could have met you guys at the petroglyphs..........just up the road from me! I wonder......has anyone thought of having a meeting place once a year.....where members who think they can do it......meet up? I know it would be difficult but I for one would push through........just to get to meet some other comrads.....it would be worth the push for me .
i think you may have started something
I have always wanted to go on an Alaskan cruise. A lot of the wildlife watching and glacier viewing is done from the boat, so it would be good for pwME.
In principle, I would love to do this.In reality I don't know when I would have the money/time/energy to carry it out. Right now I am saving my money in hopes that a reasonably effective treatment will come along.
One of the worst things about being single is traveling. You have to pay almost as much (or sometimes as much) for a room as a couple. You have no one to share a meal with (this would not apply on a cruise).
I hadn't thought of it, but I am really liking the idea. If you arrive late in the day at some places, they will give you a ticket for the next day free. Actually, I have only done this at a couple of places, but I wonder how many more would do so if one asked. This would allow us to spread our visit to a place over two days, a short time each day, without paying two admission fees.
I think some state and national parks have cabins at reasonable rates. We could go to a park and just hang out.
I would really love to do a spa, but don't think I could afford that now. I did a couple when I was still working. Both had reasonable rates, as spas go, but both have renovated, one twice, and are more expensive, and probably less pleasant, than when I was there.
If one doesn't particularly care when one sails and can go on short notice, cruises can be surprisingly affordable compared to other sorts of trips. The thing to watch for us would be the difficulty in boarding and de-boarding (a lot of waiting and not necessarily a good place to sit).
http://vacationstogo.com/(may require free registration to see deals, but is a reputable site)
glenp would be interested in this discussion
I like this idea also, not sure how many in my area would be able to meet though. Perhaps we/I should start a thread on it?
Karen — thanks for the incredible writeup! It was beyond awesome to finally meet so many other ME/CFS'ers. Truly friends for life!
Now we just need to get everyone else to start their own "regional" meetups!
Tammy — how long have you been in ABQ? I've been really shocked at how many other community members are in central NM, I thought I was completely alone back in 2003 & it certainly seemed like I had to 'train' all the local doctors (old St Joeseph's)!
I hope Sushi is up for more local hangouts, she's always been bursting with knowledge and insight, I look forward to every minute hearing one of her stories or news nuggets!
How many other lights are around our community, just waiting to be heard and appreciated?!
Tammy -- next time for sure! adin and Jen (Devi75) introduced me to Albuquerque in a new way. All I'd seen in the couple years I've been here are grocery stores and doctors offices! Never even knew about volcanoes on my doorstep!
You can also try a Google Site Search
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