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

[snowfoot]

I would like to dismantle our whole so-called health care system or at least rename it so it is clearer for those of us with memory challenges. How about Death Squad or Guinea Pig something.

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.

Our country's attitude of anything goes if it includes campaign contributions or enriches rich people is not conducive to a healthy people (especially us!) and letting really poisonous stuff stay on the market like diet coke while sending swat teams into health food stores & throwing people in jail for medical cannabis. This is civilization? Not in my book.

You might not this is as much fun as going to beautiful places but if we change that mindset everywhere will be beautiful and we can all live happily ever after. Dreaming is good! I am having fun right now (lying in bed with my laptop) lol

 

[snowfoot]

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?

i practically live on the Pacific Crest Trail in northern CA near Oregon Stop by!

 

[Ria Roegiers]

I would like to dismantle our whole so-called health care system or at least rename it so it is clearer for those of us with memory challenges. How about Death Squad or Guinea Pig something.

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.

Our country's attitude of anything goes if it includes campaign contributions or enriches rich people is not conducive to a healthy people (especially us!) and letting really poisonous stuff stay on the market like diet coke while sending swat teams into health food stores & throwing people in jail for medical cannabis. This is civilization? Not in my book.

You might not this is as much fun as going to beautiful places but if we change that mindset everywhere will be beautiful and we can all live happily ever after. Dreaming is good! I am having fun right now (lying in bed with my laptop) lol

Very well said indeed! I think it is a worldwide attitude and problem, I am Belgian and it isn't any different here.

 

[snowfoot]

There are more of us than there are of them, off with their heads I say. Or at least keep them from being the head of anything! I am having too much fun ranting... i know it is not the people, it is the system, a system of evil, where power is concentrated into too few anonymous hands and nobody is responsible. Corporations don't have souls and must not have the rights of people. The get big or get out mindset has to be gone before all that's left are robots. We the people are all hurting on every level and so our precious planet. We can do better than this. And I believe we will, educating one doctor at a time we will be listened to. Keep up the great work!

 

[Abrin]

As silly as this is to say, I'd go out and get the first crappy job I could find!

Unlike the majority of people who have ME/CFS I actually can't think nostalgically back to a time I was well since I can't ever remember being well. I have been showing symptoms since I almost died from an infection I developed in the operating room after getting my tonsils removed in childhood.

I actually have no idea what it feels like to be 'normal'. Sometimes I think I am probably better off never knowing because it must be awful to have had an active life once and lost it. But then I wonder if it is just as bad to have never known what you have lost.

The whole situation reminds me of a lyric in a Queen song that goes 'just one year of love is better than a lifetime alone'.

Is it better to have loved and lost then to never have loved at all? Is it better to have once had a 'normal' life then to never have a life at all? I am sure it is one of those 'grass is always greener situations'. I just felt I should explain the reason for my answer since I know I am the odd one out when it comes to these things and I was fearful I would accidentally offend someone with my answer .

Lots of people have these huge and wonderful dreams. I am not knocking them at all. They are all awesome dreams!

Me, I just want a chance to be a boring, unnoticed 9-5 working drone. Nothing special about me at all, nothing different or weird.

I'd love to just blend into the background and finally for just a single moment in my entire life 'be normal' and fit in with the status quo.

Reading over what I just typed, it really kind of sounds depressing when you read it in text but honestly it is truly my dream and I say this with a gladness in my heart.

I am kind of embarrassed and ashamed right now that everyone is going to judge me for my answer or think that it is silly. (I always seem to be different and weird no matter what type of group of people I am in.) But, I've decided to risk it and push through that fear anyway and not give into the compulsion to just delete my reply.

But yeah....I am smiling to myself right now just thinking about it. If someone could wave a magic wand over my head and I would be miraculously better...I'd jump out of bed with a song in my heart and a spring in my step and be out the door so fast thinking it was the first thing I wanted to do.

 

[snowfoot]

As silly as this is to say, I'd go out and get the first crappy job I could find!

Unlike the majority of people who have ME/CFS I actually can't think nostalgically back to a time I was well since I can't ever remember being well. I have been showing symptoms since I almost died from an infection I developed in the operating room after getting my tonsils removed in childhood.

I actually have no idea what it feels like to be 'normal'. Sometimes I think I am probably better off never knowing because it must be awful to have had an active life once and lost it. But then I wonder if it is just as bad to have never known what you have lost.

The whole situation reminds me of a lyric in a Queen song that goes 'just one year of love is better than a lifetime alone'.

Is it better to have loved and lost then to never have loved at all? Is it better to have once had a 'normal' life then to never have a life at all? I am sure it is one of those 'grass is always greener situations'. I just felt I should explain the reason for my answer since I know I am the odd one out when it comes to these things and I was fearful I would accidentally offend someone with my answer .

Lots of people have these huge and wonderful dreams. I am not knocking them at all. They are all awesome dreams!

Me, I just want a chance to be a boring, unnoticed 9-5 working drone. Nothing special about me at all, nothing different or weird.

I'd love to just blend into the background and finally for just a single moment in my entire life 'be normal' and fit in with the status quo.

Reading over what I just typed, it really kind of sounds depressing when you read it in text but honestly it is truly my dream and I say this with a gladness in my heart.

I am kind of embarrassed and ashamed right now that everyone is going to judge me for my answer or think that it is silly. (I always seem to be different and weird no matter what type of group of people I am in.) But, I've decided to risk it and push through that fear anyway and not give into the compulsion to just delete my reply.

But yeah....I am smiling to myself right now just thinking about it. If someone could wave a magic wand over my head and I would be miraculously better...I'd jump out of bed with a song in my heart and a spring in my step and be out the door so fast thinking it was the first thing I wanted to do.

thank you so much for sharing what is in your wonderful heart, Abrin, the truth sets us free and the freer you are the freer we all are... what else is there that means anything... i see us all dancing in the streets with our truth (even if just metaphorically) When you tell me your truth you are helping me acknowledge mine, you are helping me to be brave enough to look my challenges in the face, so, again i thank you precious child of god.

 

[SueS]

This thread is just so, so beautiful.

And very bittersweet. (@Abrin, there is nothing to judge you or shame you about in what you wrote. Absolutely nothing. I hope with all my heart that you get to have that miraculously normal life. I mean, all of these other things we want to do would we awesome, but just the feeling of having an everyday kind of day, where your body is quiet and peaceful, and your brain is working, and your ATP is recycling itself? I mean, ANYTHING would be blissful, right?

Having said that, I have 40,000 things I want to do.

I LOVE how many people want to get veggie gardens going. Unsurprising, right? We have been forced to focus on eating right. Imagine being able to eat right from veggies you've pulled yourself from deep, dank soil.

Oh, man. I'd learn more about permaculture.

Like @Cort, I'd dig deeper into Heidegger.

I would get a dog. I miss having a dog so much. I now have a cat. She is a stray, who we have adopted, and it is a pleasure to have her around.

But cats are so not dogs.

I reckon the very first thing I'd do is housework. How boring is that? But we live in constant squalor and so the thought of getting the house in order, pushing back the chaos along with all the weeds in the garden, would be awesome. Then after cleaning the house from top to bottom, I'd resume my usual amount of untidy dusty bunny slackness. But it would be way more harnessed than this current deal.

I would jump my partner's bones regularly.

I would start yoga again. Three times a week.

I would get into writing some investigative journalism. Stuff that involves going out, driving places, interviewing people face-to-face. Taht would be scary and bloody awesome.

I would travel as much as I could possibly afford. I have never left my birth country, and it is a complete crying shame.

I would start teaching a writing course that involves meditation and little opening-up creative games and that would all be done by candlelight.

I would join with my friend Jane, and we would do what we've always said we'll do if we get well. A symbolic, uber sporty, threefold deal that involves scuba diving in the sea, horse riding on the land, and finally sky-diving. Rising phoenixes

 

[Cort]

This thread is just so, so beautiful.

And very bittersweet. (@Abrin, there is nothing to judge you or shame you about in what you wrote. Absolutely nothing. I hope with all my heart that you get to have that miraculously normal life. I mean, all of these other things we want to do would we awesome, but just the feeling of having an everyday kind of day, where your body is quiet and peaceful, and your brain is working, and your ATP is recycling itself? I mean, ANYTHING would be blissful, right?

Having said that, I have 40,000 things I want to do.

I LOVE how many people want to get veggie gardens going. Unsurprising, right? We have been forced to focus on eating right. Imagine being able to eat right from veggies you've pulled yourself from deep, dank soil.

Oh, man. I'd learn more about permaculture.

Like @Cort, I'd dig deeper into Heidegger.

I would get a dog. I miss having a dog so much. I now have a cat. She is a stray, who we have adopted, and it is a pleasure to have her around.

But cats are so not dogs.

I reckon the very first thing I'd do is housework. How boring is that? But we live in constant squalor and so the thought of getting the house in order, pushing back the chaos along with all the weeds in the garden, would be awesome. Then after cleaning the house from top to bottom, I'd resume my usual amount of untidy dusty bunny slackness. But it would be way more harnessed than this current deal.

I would jump my partner's bones regularly.

I would start yoga again. Three times a week.

I would get into writing some investigative journalism. Stuff that involves going out, driving places, interviewing people face-to-face. Taht would be scary and bloody awesome.

I would travel as much as I could possibly afford. I have never left my birth country, and it is a complete crying shame.

I would start teaching a writing course that involves meditation and little opening-up creative games and that would all be done by candlelight.

I would join with my friend Jane, and we would do what we've always said we'll do if we get well. A symbolic, uber sporty, threefold deal that involves scuba diving in the sea, horse riding on the land, and finally sky-diving. Rising phoenixes

You would be having a great time! Let it be so

 

[taniaaust1]

If I found myself suddenly well, first thing I experience would be confusion as I have so many things I want to do and have been waiting for years to do again, I wouldnt know where to start so Ive really had to think about this.

My first 14 days of wellness.
Firstly I'd clean up. The joy in having a clean house would be awesome. It would feel so amazing.

Secondly I'd go shopping for new clothes, Ive put on weight and right now have hardly no clothes which fit.. right now Im only half dressed as I dont have enough fitting clean clothes. (I'd not worry about getting myself a car at this point just to have the joy of being able to walk to the shops).

Thirdly I'd go down to the beach (walk there of cause) and just spend a whole day there. (I have a beach only 5 mins away that I always wish I could get there and have some fun time there).

Fourthly I'd buy a car and then go out visiting people and family I now havent been able to see for years.

Fifth.. I'd weed the garden .. more awesome of just being able to be tidy and make the house look great.

sixth. I'd go for a weeks vacation. I havent been able to go on a vacation to a place where I'd like to go for many years. (last vacation where I went somewhere I really wanted to go was probably 10 years ago). Probably to Queensland and all the tourist hot spots there.
........


Other things on my bucket list would be

- travelling. I want to see places in the world
- I'd like to do childrens parties and start my own business in this.
- I want to do a photography course for my childrens party venture (I hope to do that actually before I even get well).
- dating!!!being able to get out and meet people again would be awesome. Find a great new boyfriend.
- charity work. I'd like to go overseas and work in an orphanage or do aid work overseas in a place which has great need.

 

[FOUR X FOUR]

I'd play golf

 

[Tigerlily]

Eat pizza.

 

[ritasheart]

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!

It IS good to dream, and I have thought about this often!

No question what I would do, I would go hiking in the Smokies with a new digital DSLR camera to capture lots of beauty while enjoying all the sights and sounds, than after an entire day I would camp in a motel (wink)

I have loved thethe Smoky Mountains since I was a teen and camped there many times. I was heart sick over the fires horrific fires that struck in Noveember 2016, so I would love to see the progress since then and show my support.

In the 90s I was so "home sick" for the Smokies, my hubby took me for a very quick trip. I rode lying in the back seat and we made a quick 3 hr (one way) trip to Cades Cove for about an hour, then back home. I took this photo of the Shields Cabin with an old film camera. I love this cabin!

[bimg=no-lightbox]http://ritasheart.com/images/09.10.17.jpg[/bimg]

I am going back some day!

Rita

 

[Lissa]

It IS good to dream, and I have thought about this often!

No question what I would do, I would go hiking in the Smokies with a new digital DSLR camera to capture lots of beauty while enjoying all the sights and sounds, than after an entire day I would camp in a motel (wink)

I have loved thethe Smoky Mountains since I was a teen and camped there many times. I was heart sick over the fires horrific fires that struck in Noveember 2016, so I would love to see the progress since then and show my support.

In the 90s I was so "home sick" for the Smokies, my hubby took me for a very quick trip. I rode lying in the back seat and we made a quick 3 hr (one way) trip to Cades Cove for about an hour, then back home. I took this photo of the Shields Cabin with an old film camera. I love this cabin!

[bimg=no-lightbox]http://ritasheart.com/images/09.10.17.jpg[/bimg]

I am going back some day!

Rita

Cades Cove!!! That brings back memories for me too.

Summer of 1992 -- cross country camping trip with college friends. We spent a few days in the Smokies and camped in Cades Cove..... The last night we were there I got whuffled by a black bear through the paper thin fabric of the tent wall.

To this day (even assuming I were well...) I can't sleep/camp in bear country. I lie awake listening -- terrified, motionless, and barely even able to blink in the darkness. I learned early on that it's useless to even try!

That said -- I still dream of being able to hike and camp again, and in my wildest dreams --- backpacking!

 

[ritasheart]

Cades Cove!!! That brings back memories for me too.

Summer of 1992 -- cross country camping trip with college friends. We spent a few days in the Smokies and camped in Cades Cove..... The last night we were there I got whuffled by a black bear through the paper thin fabric of the tent wall.

To this day (even assuming I were well...) I can't sleep/camp in bear country. I lie awake listening -- terrified, motionless, and barely even able to blink in the darkness. I learned early on that it's useless to even try!

That said -- I still dream of being able to hike and camp again, and in my wildest dreams --- backpacking!

Thanks for sharing! I didn't have that close of an encounter with a bear! But, our family was in a camper near Gatlinburg and a bear and her cub raided a trash can about midnight and woke us up. We were seafe, but it still jolted us to see them!

Dream on, there is nothing like hiking!

 

[Not dead yet!]

I used to go hunting for wierd places in my local area. I used to locate natural springs and draw water from them once in a while. I used to backpack for a week or ten days. I was planning a career move from IT to Telecom, which I prefer. I used to travel and learn languages. Now it's like I'm walking uphill whenever I try to learn to speak better French or whatever. I want to go to Cozumel and just stay there for a couple of weeks, exploring the mysteries of the past. I've been there twice with a Cruise, and each time, it took a major effort of will to get back on the boat.

I dream of visiting some cool people I know have moved to Costa Rica. I dream of visiting Argentina and experiencing the pace of life there. I dream of getting lost in the Polynesian Pacific, on nameless islands and fishing to sustain myself. I dream of visiting Bali and climbing up to the old temple by the sea, maybe finding an abandoned cave below. I suspect one exists and I'd love to go looking.

 

[AlbertaKat]

THIS is why I joined here. I loved reading these posts (mostly) and I love the positive attitude.
Thank you so much @Cort for starting this group.

I would enjoy travel and RIDE horses again!

(I’d post a photo at this point but I can’t figure out how to access my photo library this morning. Another time.).... figured it out as I was about to post! (I’m swimming in Lake Sevan/Savin? In Armenia a few years back.)

I hope you all enjoy this day!
AlbertaKat

 

[Kobold]

I have been through such an extreme suffering during the past 19 years with my ME that sometime it is difficult to find sense in life even if I was healthy now. Perhaps becoming a buddhist or cartusian monk to find the answer why man can suffer so much. But from the past I know that the human brain forgets everything given sufficient time. Of course I have plans: 1. Get back to scientific research but concentrate on something useful in helping suffering reduction or elimination. 2. Establish a temple or a foundation to help suffering people and animals 3. Work in a kindergarden (I lost my son due to my ilness and my current wife can't have children.)

But the first thing I would do I would go running to the hilly woods around Prague again.

 

[Kristine]

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?

 

[Kristine]

I would take more dance lessons with my husband, when it had to stop,ice skate lessons, piano lessons, travel everywhere, finish my book, go on amusement park rides, drive everywhere, ride bikes, play tennis, go to mini golf, arcades, if only.....
Kristine

 

[Neil W]

I'll go back to playing squash, love the game! Just miss doing anything physically demanding and that sweaty feeling after a 'good work out'. So maybe just run or cycle as far as possible until the stitch was as painful as a fraction of our illness