Poll The Reverse Bucket List for ME/CFS: If You Were Well.....What Would You Do?

[Boronia]

My big one is that Iwould hike the coastal trail in North Eastern Spain! But my smaller ones are that I would be spontaneous... If I woke up to a nice morning I would spontaneously decide what to do....body boarding, walking, visiting friends, etc, etc The radius of my movements would increase massively.

 

[Cort]

I don't know what a Friesian Stallion is but it sounds like a freaking amount of fun.

I would ride a Friesian Stallion for miles and miles! I would also get back into photography and go places to shoot lots of pictures!

 

[Cort]

My big one is that Iwould hike the coastal trail in North Eastern Spain! But my smaller ones are that I would be spontaneous... If I woke up to a nice morning I would spontaneously decide what to do....body boarding, walking, visiting friends, etc, etc The radius of my movements would increase massively.

"The radius of my movement would increase massively" - I really like that

 

[fdotx]

A big difference between ME/CFS and FM and depression is many people with ME/CFS/FM know exactly what they would do if they got well.

It's good to dream!

I know what I would do - given the free time and money - me and the dogs would backpack the Pacific Crest Trail top to bottom in the Sierra Nevada. What would you do?

Cort have you read "Wild" by Cheryl Strayed? I've heard it's good - she went off on that trail so totally (and stupidly some might say) unprepared. I've walked a bit of the Appalachian trail - pretty in it's own way but not the grandeur of rugged mountains. The Colorado Trail would be a pretty nice hike too...

 

[sharonklb]

I was fortunate to have backpacked around the world and became ill after BUT apart from abseiling down table mountain (which had cloud cover the day i was supposed to do it), i now dream of more normal activities
1. Watch a film all the way through and read a book/magazine/document without losing the plot and gettting a migraine
2. Be able to do things on the spur of the moment, without worrying about the repercusions
3. Wear a fitted dress and get my waist back (i now wear loose clothing all the time, to accomodate my distended stomach) Wear make up, do my hair, spend time looking better than the local bag lady
4. Take long walks with my dogs and be able to run
5. Go back to work...having a career which would stimulate me rather than a condition, which does the opposite.
6. Eat out in restaurants
7. Go on holidays and enjoy the adventure rather than dread the stress of it all and the fact that i sometimes hinder other people. (plus the insurance now costs me an arm and a leg)
8....oh and maybe "wing walk"
9. Do vouluntary work at home and abroad
10. Wake up every day without the problem of not knowing what the day will bring

xxx

 

[Tony L]

Being able to visit the friends and family that I miss. Just to be able to plan a trip and do it would be amazing.

The freedoms that we loose restored.

 

[lisaadele]

It would be amazing to be able to do the normal living activities without consequence. I'd love to be able to sit and drink wine with my older kids and chat with them and feel good. Going for a long hike and have that feeling of tired good health. I would love to be able to abandon the constant preoccupation with my health, how I'm feeling... and just cary on!

 

[Mary Hamilton]

I don't know what a Friesian Stallion is but it sounds like a freaking amount of fun.

Friesian horses are the big black horses whose tails touch the ground and their manes also grow so long that they touch the ground. They are the most gentle horse that I have found. I have a friend who has several.

 

[Mary Hamilton]

I was fortunate to have backpacked around the world and became ill after BUT apart from abseiling down table mountain (which had cloud cover the day i was supposed to do it), i now dream of more normal activities
1. Watch a film all the way through and read a book/magazine/document without losing the plot and gettting a migraine
2. Be able to do things on the spur of the moment, without worrying about the repercusions
3. Wear a fitted dress and get my waist back (i now wear loose clothing all the time, to accomodate my distended stomach) Wear make up, do my hair, spend time looking better than the local bag lady
4. Take long walks with my dogs and be able to run
5. Go back to work...having a career which would stimulate me rather than a condition, which does the opposite.
6. Eat out in restaurants
7. Go on holidays and enjoy the adventure rather than dread the stress of it all and the fact that i sometimes hinder other people. (plus the insurance now costs me an arm and a leg)
8....oh and maybe "wing walk"
9. Do vouluntary work at home and abroad
10. Wake up every day without the problem of not knowing what the day will bring

xxx

I know what you mean about the loose clothing. When I was on neurontin and lyrica I gained 60 lbs. I'm no longer on them but I can't lose it! When my husband got out of bed this morning, my cocker spaniel was jumping around on the bed and squealing about getting up. I said to my husband, 'I wonder what it feels like to be that excited about getting up in the morning?'. It's been so long since I've felt that way.

 

[Boronia]

@Boronia Since I'm headed to Scotland to find me a Highlander to travel with, (on my way to Borneo and New Zealand) can I stop off and spend a few days resting with you?

I don't surf but I love to watch the ocean, so I can be the lifeguard!

Absolutely, pop on by!!!

 

[Hilary16]

Oh my....I would definitely plant a huge garden and then take all the produce and flowers in the house and cook up a storm! Have great lovely dinner parties, dance and laugh and eat delicious cheesecakes and baguettes! Crusty, yummy baguettes. I would travel to Morocco for sure, and South Africa. I would hike the hills in England and Scotland. I would visit Iceland and Inuvik. I would weave in my weaving room for hours at a time and delight in working with complex patterns. Reading books and remembering them - what a joy!!! Libraries - oh my gosh, I can't imagine. I would go to Washington DC and do all the galleries, monuments. Walk the streets, take in the vibrancy. I would travel, ride my bike, hike with my husband and our dogs. I would jump for joy!!! I would be impulsive! I would feel that lovely fantastic feeling of using my muscles and enjoying that saturation after pushing them, and knowing that the next day I could do it all over again. I would do Pilates....

 

[Cort]

Oh my....I would definitely plant a huge garden and then take all the produce and flowers in the house and cook up a storm! Have great lovely dinner parties, dance and laugh and eat delicious cheesecakes and baguettes! Crusty, yummy baguettes. I would travel to Morocco for sure, and South Africa. I would hike the hills in England and Scotland. I would visit Iceland and Inuvik. I would weave in my weaving room for hours at a time and delight in working with complex patterns. Reading books and remembering them - what a joy!!! Libraries - oh my gosh, I can't imagine. I would go to Washington DC and do all the galleries, monuments. Walk the streets, take in the vibrancy. I would travel, ride my bike, hike with my husband and our dogs. I would jump for joy!!! I would be impulsive! I would feel that lovely fantastic feeling of using my muscles and enjoying that saturation after pushing them, and knowing that the next day I could do it all over again. I would do Pilates....

I got excited just reading this I would definitely plant a huge garden...and go to DC and walk and walk visiting all the museums. Then (if I had the money it would be over to London, Paris and Italy to see more museums. I would do that in winter after I had finished my Pacific Trail hike with my two dogs

 

[Lissa]

Sign me up for the ME/CFS Post Cure World Tour!!! Hope to see you all there!

 

[Hilary16]

Oh my gosh, wouldn't that be fabulous? PCWT here I come! I just read some great news for the ALS community - they said that the 2014 bucket challenge money was designated for research and as a result they have just identified a gene (NEK1) that contributes to the disease. No next step yet, but progress. I immediately thought...just one breakthrough and maybe this complex disease ME/CFS puzzle may be understood. So a I love the vision of a Post Cure World Tour!!!! Love it!! And Cort, the Pacific Trail would be on my list too...keep that one for sure.

 

[ShyestofFlies]

I actually have chronic treatment resistent major depression disorder that I think cycles into dysthemia when the major episodes have remissed... Official dx is only MDD though, plus an additional 5-6 anxiety type disorders. Yup. In addition to cfs, fms, and everything else.

However despite my worst days I still very much want to live and have a future. I want to get married some day, have a nice little house, a dog or two. I want to have a job of some kind even if I am self employed and work from home and it isn't enough to support me. I never want to have to say no to something I want to do because of my health. But these are pretty normal...

Dream list though
I would really like to go see the northeast US atlantic tide pools in person.
I really would like to give back to other people who are as sick as I am now.
I want to adopt a child (well 2 rather then one) and or take in a asylum seeker.
I want to see a chicken agility competition.
I would really like to not need to see another doctor again.

 

[Cort]

Oh my gosh, wouldn't that be fabulous? PCWT here I come! I just read some great news for the ALS community - they said that the 2014 bucket challenge money was designated for research and as a result they have just identified a gene (NEK1) that contributes to the disease. No next step yet, but progress. I immediately thought...just one breakthrough and maybe this complex disease ME/CFS puzzle may be understood. So a I love the vision of a Post Cure World Tour!!!! Love it!! And Cort, the Pacific Trail would be on my list too...keep that one for sure.

That just takes funding and lots of people contributing their genes. Nancy Klimas is trying to do the same thing. I have a blog on that coming up

I'm car camping in North California / Oregon now - I keep coming across that trail!

 

[Cort]

I actually have chronic treatment resistent major depression disorder that I think cycles into dysthemia when the major episodes have remissed... Official dx is only MDD though, plus an additional 5-6 anxiety type disorders. Yup. In addition to cfs, fms, and everything else.

However despite my worst days I still very much want to live and have a future. I want to get married some day, have a nice little house, a dog or two. I want to have a job of some kind even if I am self employed and work from home and it isn't enough to support me. I never want to have to say no to something I want to do because of my health. But these are pretty normal...

Dream list though
I would really like to go see the northeast US atlantic tide pools in person.
I really would like to give back to other people who are as sick as I am now.
I want to adopt a child (well 2 rather then one) and or take in a asylum seeker.
I want to see a chicken agility competition.
I would really like to not need to see another doctor again.

I'm struck by how much you'd like to be able to do for others.

 

[Issie]

What a gorgeous pic of the Sierra Nevadas Cort. Maybe a bunch of us could do it together, then tackle all the 14'ers in Colorado and finally the highest mountain on each continent - culminating in a book that is made into a movie.

I did one 14er in CO. Seems so long ago. Was a huge accomplishment for me. View at the top, exhilarating.

 

[GG]

I did one 14er in CO. Seems so long ago. Was a huge accomplishment for me. View at the top, exhilarating.

What was the Elevation gain? For a 14Ker. In NH/New England, over 1,000 to 3K feet is quite a bit of elevation gain. but the harder hikes are 2K to 3K? Mt Washington is only 6290 feetish

http://home.earthlink.net/~ellozy/washington.html

GG

 

[Issie]

What was the Elevation gain? For a 14Ker. In NH/New England, over 1,000 to 3K feet is quite a bit of elevation gain. but the harder hikes are 2K to 3K? Mt Washington is only 6290 feetish

http://home.earthlink.net/~ellozy/washington.html

GG

My home was at 7,000 feet there. So an elevation hike of another 7,000 feet. Last time I went back for a visit there, I had to be on oxygen at 7,000 feet. We decided I can't go back. Sad, it's so beautiful there. I used to love telemark skiing. Went all over those mountains.

Hoping for better health, some day........

Issie