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

[Julianna Grace]

At peace and bewildered. at my advanced age I have a simple way of life in a small dwelling on a tiny island with my (neglected) garden and my five rescue cats and a very small pension..

I would like not to feel so ill all the time and that would be more than enough for me. I made peace with this when after 30 years of misdiagnosis and medical mayhem and abuse I finally learned the truth.
ME is easier than ( alleged) mental illness in so many ways

 

[Chicky]

At peace and bewildered. at my advanced age I have a simple way of life in a small dwelling on a tiny island with my (neglected) garden and my five rescue cats and a very small pension..

I would like not to feel so ill all the time and that would be more than enough for me. I made peace with this when after 30 years of misdiagnosis and medical mayhem and abuse I finally learned the truth.
ME is easier than ( alleged) mental illness in so many ways

 

[Chicky]

I would so love to be able to snow ski in Aspen again. The closest thing, for me, to this rush of endorphins. I felt so free, joyful, no pain! Wonderful food too. A little piece of Heaven..ahhh!

 

[Tamsyn]

I would write one more novel so that you could find it whilst browsing in the library, and then I'd put on a party dress and pick a basket of flowers and green beans from my gorgeous garden, and swing onto my horse (who wonders why I never do this anymore) and gallop over to your house to deliver the fresh produce in time for your kitchen session, and then eat that scrumptious dinner you're cooking. Of course, it will be mid-summer, and we will all eat and laugh on the deck, and the stars will shine later, and tomorrow, none of us who went to bed late will have PEM. Are you in, my peeps?

 

[Habs93]

Would get back into Plumbing open up my own company. Get a van. Would for sure get back into playing hockey . Working out because i know what i would of had to do to gain weight.

 

[Apo Sci]

I think one thing ME does is makes you appreciate being well. That is one thing that is easy to take for granted when you have a healthy body. If I recover I will probably do the masters level health coach certification and start several businesses. I'd definitely get back into mountain biking-I miss that. Probably do some rock climbing and river rafting. Get into a new relationship and make a family.

I appreciate that I took advantage of opportunities to get in some good experiences when I was well-getting out in nature, ski trips. It's easy to get down on how limited one's current functional state is.

Several very high functioning individuals have had their professional lives destroyed by ME-atheletes, physicians, journalists etc yet it still isn't adequately funded by the US National Institutes of Health.

 

[ginag]

As a new member I love this thread.

I would like to be able to read a book, and remember what I read. Then to be able to process and articulate with someone.

Every time I see a person running I look with intensity thinking If only I could do that….jogging.
It would be so freeing

I would be the wife my husband deserves and have fun with him doing things together like hiking a beautiful mountain , tennis , riding bikes , traveling to Europe. One member wrote about Costa Rica. I have been there several times. I encouraged my husband to do things with a tour group while I stayed at the hotel.
I remember sitting at the pool hearing conversations of people around me who were there to do many adventures as a group. It made me happy for them but sad for me.

I would actually make plans for every weekend. Have brunch or dinner with friends.

To Envy is not thought of as a good quality, but I envy so much.
The spirit is so willing but the body is weak.
One member wrote….Rising phoenixes …I so agree.

 

[Ughhh]

I would get married and have a baby right away. And then adopt a few more at least. I'd also start attending as many social activities as possible before the baby comes, I have many interests (knitting, toastmasters, meetup groups, ping pong, bible study).

 

[GrammaLinda]

I would sit in the yard and watch my shadow on sunny days. I would put the top down and search for the sun. The sun is my friend. I would play with my dog and take him for walks. I would visit my children and grandchildren often. Attend their school events and games. I would hike the beautiful Olympic Peninsula and dig for clams and pick oysters. I would learn to catch crab. I would volunteer to help the needy. My wants and dreams are simple.

 

[GrammaLinda]

This mimics my story. At my advanced age, misdiagnosed and often iagnored. I feel as if I have been abandoned by the medical world and left to my own devices I have made peace, also. I no longer fight it and become severely depressed. I have an understanding and devoted care taker in my husband. He surprised me with a 3 day train trip with our own cabin room. The best vacation ever. Relaxing and sleeping on the train. The only way to travel.

 

[JameDiagonal]

This mimics my story. At my advanced age, misdiagnosed and often iagnored. I feel as if I have been abandoned by the medical world and left to my own devices I have made peace, also. I no longer fight it and become severely depressed. I have an understanding and devoted care taker in my husband. He surprised me with a 3 day train trip with our own cabin room. The best vacation ever. Relaxing and sleeping on the train. The only way to travel.

That's so sweet! Having the best partner is the precious gift everyone would wish. Where is the train going anyway? Would love to try it together with my partner and kids.

 

[GrammaLinda]

That's so sweet! Having the best partner is the precious gift everyone would wish. Where is the train going anyway? Would love to try it together with my partner and kids.

We rode the Empire Builder from Seattle to Havre, MT. Picturesque scenery. It was a BYOB (we had wine), there are meals on the train but, they were nothing to attract riders. Many people had their own food. We took a small speaker and had our own music. My husband had downloaded several railroad themed songs. There are several stops along the way and many people boarded and unboarded at the stops. Some were just taking a short trip with families.

 

[JameDiagonal]

We rode the Empire Builder from Seattle to Havre, MT. Picturesque scenery. It was a BYOB (we had wine), there are meals on the train but, they were nothing to attract riders. Many people had their own food. We took a small speaker and had our own music. My husband had downloaded several railroad themed songs. There are several stops along the way and many people boarded and unboarded at the stops. Some were just taking a short trip with families.

What a pleasant trip, I'm day dreaming by now =) I guess, country songs would also suit the trip. Geez, I'm getting excited to try this with my family.

 

[Isander]

This mimics my story. At my advanced age, misdiagnosed and often iagnored. I feel as if I have been abandoned by the medical world and left to my own devices I have made peace, also. I no longer fight it and become severely depressed. I have an understanding and devoted care taker in my husband. He surprised me with a 3 day train trip with our own cabin room. The best vacation ever. Relaxing and sleeping on the train. The only way to travel.

Resonating with this. Not been offisland or further than the lane for nearly two years apart from a Helicopter ambulance which does not count,... and my dream is to hitch a chopper ride again. Up to Donegal for the Wild Life park,,, then to the top of Croagh Patrick.. then on to the Trad Farms at Muckross in Kerry... then Mizen Head and a few other loved places en route. Here is our bird of mercy...


I have always yearned to travel in a chopper. There is something so.....

 

[Isander]

I am 75 years old and neither my mothers nor my grandmothers nor my great grandmothers generation had to deal with the horrible health issues we are confronted with and not a lot of people from my generation either (that i know of.) I am angry (which is good, energizing) And they were all healthy to a good old age.
lol

My grandmother's famiy in the UK was all but wiped out by TB. She gave birth to nine and raised three.
The rest died some in their teens form TB

She herself died far too young of diabetes that blinded her and cost her both her legs. . You are seeing the past through rose coloured glasses.

These illnesses were untreatable and deadly.

Old saying bids us beware of anger ...

 

[GrammaLinda]

I once had a very extensive bucket list. Life, finances and a willing partner got in the way. Then this complicated and frustrating disease. I am now seldom depressed although I do have my days. Summer always helps me. I think my bucket list now is full of longing for a longer summer. I want to enjoy every minute of it with my dog and husband, on my deck or cruising the gorgeous pacific northwest in my convertible on days I can drive. Mostly enjoying gazing at the water and the trees and the mountains. Camping, visiting wineries, sometimes just sitting by a campfire and reading for hours. And music - always music. Having a supporting husband who shares the same interests has improved my life 100% Most importantly my trust and faith in God who has made it all happen and who blesses me with some great days.

 

[GrammaLinda]

What was your professional life before, Paw?

I was in a similar boat. I divorced and through a dating site and with lots of prayer, I found the perfect partner. He is generous and loving and the best caregiver when I need it. But guess what - he has occasional health issues and I manage to find strength and care for him the best I can. We are both 73 and willingly support each other as needed. So do not give up on finding a partner to share your time and interests.

 

[GrammaLinda]

My grandmother's famiy in the UK was all but wiped out by TB. She gave birth to nine and raised three.
The rest died some in their teens form TB

She herself died far too young of diabetes that blinded her and cost her both her legs. . You are seeing the past through rose coloured glasses.

These illnesses were untreatable and deadly.

Old saying bids us beware of anger ...

Many of my relatives lived to a ripe old age thanks to amazing genetics. However, My father died in 1979 of what we now think was an anneurysm. This was prior to the miracles of modern medical diagnostics. My two brothers also have anneurysms - one had an ascending aorta replacement and then extensive cardiac ablation for atrial fib. My other brother an anneurysm that has not advanced past 4.8 cm. Both have had prostrate cancer requiring surgery.
My maternal grandmother died from rheumatic fever in 1926 when my mother was not even 2 yrs. My mother's heart valves were damaged from the fever, but she received new valves and pacemaker in 1996 and now I hear they no longer have to open the chest and heart for every surgery. She lived many more fruitful years.
My ancestors were farmers and raised all their own food. It was healthy, flavorful and untainted. As organic as you can get. They were not plagued by many of today's health issues from poor eating habits. Obesity, diabetes, high blood pressure. Populations today are plagued with unhealthy eating habits leading to death and disease from over-eating junk food and just plain over-eating, We have GMO food, chemicals, artificial sweeteners, tasteless food, and so many fad diets that do not meet the human body's needs. Including meat, whole grains, fresh fruits and veggies grown naturally. And yes eggs - the whole protein. It is possible but costly to find "clean" meat.
The past was wholesome and much more simple in many ways, but definitely not without many health issues that were not treatable - diabetes being one of them. Life was not as easy as you think. Sorry.

 

[Isander]

Many of my relatives lived to a ripe old age thanks to amazing genetics. However, My father died in 1979 of what we now think was an anneurysm. This was prior to the miracles of modern medical diagnostics. My two brothers also have anneurysms - one had an ascending aorta replacement and then extensive cardiac ablation for atrial fib. My other brother an anneurysm that has not advanced past 4.8 cm. Both have had prostrate cancer requiring surgery.
My maternal grandmother died from rheumatic fever in 1926 when my mother was not even 2 yrs. My mother's heart valves were damaged from the fever, but she received new valves and pacemaker in 1996 and now I hear they no longer have to open the chest and heart for every surgery. She lived many more fruitful years.
My ancestors were farmers and raised all their own food. It was healthy, flavorful and untainted. As organic as you can get. They were not plagued by many of today's health issues from poor eating habits. Obesity, diabetes, high blood pressure. Populations today are plagued with unhealthy eating habits leading to death and disease from over-eating junk food and just plain over-eating, We have GMO food, chemicals, artificial sweeteners, tasteless food, and so many fad diets that do not meet the human body's needs. Including meat, whole grains, fresh fruits and veggies grown naturally. And yes eggs - the whole protein. It is possible but costly to find "clean" meat.
The past was wholesome and much more simple in many ways, but definitely not without many health issues that were not treatable - diabetes being one of them. Life was not as easy as you think. Sorry.

Please do not say sorry when you are not and I did not say life was easy in the past. Please read my post.. I am nearly eighty. We choose what we eat and folk are not as ignorant as you are making out .Cllearly you did nto read my post properly. That is fine. it is hard to decipher what you are really saying so I will leave it there. You hate then and you hate now. My life is too short now to do else. Blessings and peace and farewell, and it is very rude to continue and argument when the other party has opted out.