Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

What would you be doing if you weren't riddled with ME/CFS

Discussion in 'General ME/CFS Discussion' started by TedBakerBoy, Mar 5, 2017.

  1. TedBakerBoy

    TedBakerBoy

    Messages:
    93
    Likes:
    92
    Glasgow (UK)
    As above says, what would you guys be doing if you weren't suffering from ME/CFS.? It seems we all spend half our lives lurking on these forums looking for answers rather than living and enjoying life. Me personally i would take up football again and be more sports active. I'm recovering slowly as i don't have full blown cfs just mild symptoms. So what would you all be doing?
     
    Invisible Woman, erin, AndyPR and 2 others like this.
  2. veganmua

    veganmua Senior Member

    Messages:
    141
    Likes:
    211
    London, UK
    I used to be a makeup artist and hairstylist. I finally admitted my career was over in 2015, but I'd been struggling through working a couple of days a month for years until then. I'd be doing that, and travelling. I'd be dancing like a lunatic in clubs and at concerts. I'd be doing yoga, and going for long walks in the woods. I'd be cooking and cleaning, and doing chores instead of having someone else look after me. I might even have found the energy and inclination to find myself a nice vegan man!
     
    AndyPR, Joh and TedBakerBoy like this.
  3. lnester7

    lnester7 Seven

    Messages:
    2,675
    Likes:
    3,887
    USA
    Take over the whole wide world :)
     
  4. Diwi9

    Diwi9 Senior Member

    Messages:
    951
    Likes:
    3,384
    USA
    Riding my horse and helping others.
     
    AndyPR, Jennifer J and *GG* like this.
  5. belize44

    belize44 Senior Member

    Messages:
    923
    Likes:
    2,175
    Dancing on the spur of the moment, whenever I feel like it. Going for long walks and long drives. Volunteering someplace. Getting a dog and taking it for lots of walks. Going to social events like Meet-ups, plays, concerts. Hanging out with my friends (the ones I would make.) Rising in the morning to watch the sunrise instead of sleeping until eleven am. Sigh.
     
  6. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,654
    Likes:
    12,563
    South Australia
    something something snow leopard something something
     
  7. Lynn

    Lynn Senior Member

    Messages:
    361
    Likes:
    241
    Many, many things.
     
    AndyPR and Jennifer J like this.
  8. mrquasar

    mrquasar Senior Member

    Messages:
    341
    Likes:
    1,264
    Houston, TX USA
    Writing novels and short stories and working as a neuroscientist. Maybe I'll get back to writing again if I improve enough...
     
  9. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,423
    Vancouver, British Columbia
    Living life instead of watching it go by.
     
    Lolo, alkt, Jon_Tradicionali and 9 others like this.
  10. *GG*

    *GG* senior member

    Messages:
    6,264
    Likes:
    4,927
    Concord, NH
    No horse here, but helping others, trying to give hope to the ones who are not as well as me. If this illness ever gets cured, perhaps finding a similar illness that is so misunderstood and helping the people who fall through the cracks of the Health care systems.

    I consider myself lucky, but also a sufferer :(

    GG
     
    alkt, AndyPR, Jennifer J and 2 others like this.
  11. Diwi9

    Diwi9 Senior Member

    Messages:
    951
    Likes:
    3,384
    USA
    @*GG* - It's so important that when we get better, not to abandon PW!. Even on my worst days I think about the severe, their normal is worse than my worst...and yet we could all exist in that physical prison one day. We can never let up the pressure on government agencies until we understand and can properly treat this disease. If I could, I'd waive my MAGIC WAND and fix us all!!!
     
    alkt, AndyPR, Jennifer J and 3 others like this.
  12. soundasacrystal

    soundasacrystal

    Messages:
    71
    Likes:
    93
    I would be helping people. The worst part of this illness to me is feeling useless. And beyond that I would be backpacking, kayaking, swimming, traveling, writing. Especially travelling and writing. It's tragic what we lose with this.
     
    alkt, maybe some day, AndyPR and 4 others like this.
  13. -Jessie-

    -Jessie- Senior Member

    Messages:
    204
    Likes:
    1,000
    Michigan USA
    I would be working as a COTA (Certified Occupational Therapy Assistant), like I used to. I would be volunteering and advocating in a variety of settings and also helping out family, friends, and strangers. Lots of Travel and Road Trips, Road Trips, Road Trips! Beach days, and walks in the woods. I would spend so much more time with my niece. There are so many experiences I would love to give her, but can't. More photography. I would party and dance and have fun fun fun. Boat rides on the river and fishing.

    I have grieved the loss of many parts of my life... one of which is not having children- years ago while I was in that grieving process (biological clock ticking, but too sick to be in a relationship or have children, and the years passing by), I just wanted to be healthy enough to travel to different orphanages and hold the babies, play with the kids. Be there for them and give them love. I would still do that.

    There are things that I have tried and would love to do again... ziplining, white water rafting, powered paragliding (Any type of flying or soaring- I am so jealous of birds), more helicopter rides, riding horses. As a teenager I hiked the mountain trails in North Carolina at Chimney Rock Park- where the movie Last Of The Mohicans was filmed. It was so beautiful! I loved that movie, and loved that trip... I want to go there again, and MANY other places too.

    Anyway, can you tell I have had lots of time to consider what I would be doing with my life, if I could? There is SO much more, but I've already gone a little overboard on this posting, so will leave it at that. :)
     
    Last edited: Mar 9, 2017
  14. *GG*

    *GG* senior member

    Messages:
    6,264
    Likes:
    4,927
    Concord, NH
    I am probably better than 90% of the people on here, seems like lots move on. Like I have shared, I can be very active without severe repercussions. I can get out for short spells, and put some miles on. Cross country skiing or snowshoeing, and bicycling with the warmer months, but heat kills me!

    GG
     
    AndyPR and Jennifer J like this.
  15. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,334
    Likes:
    3,744
    I think about this a lot, i've had this for many years and it prevented me getting an education. Not that i want to go back to school, suffered enough the first time but i would want to make a difference in the world, from science to social progress to renewable energy.
    Hell, i would just get all the dishes washed for once
     
    Izola, alkt, Snow Leopard and 4 others like this.
  16. KristenSF

    KristenSF

    Messages:
    95
    Likes:
    548
    San Francisco, CA USA
    I would be traveling, attending live performances, leaving my house and walking then hopping on a bus to go into the office each day instead of working from home. Lately it's the little things I miss the most, like briskly walking a couple of blocks mid-morning to get coffee with a coworker. Also, popping out to eat dinner at a neighborhood restaurant. While I'm at it, I miss not falling asleep sitting up several times a day which seems to be my new schtick :sleep:
     
    manasi12 and AndyPR like this.
  17. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,962
    Making a beeeeelion dollars.
     
    TiredSam and AndyPR like this.
  18. David Jackson

    David Jackson Senior Member

    Messages:
    130
    Likes:
    180
    Running Marathons.
     
    AndyPR and notmyself like this.
  19. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,587
    Just doing anything I wanted to do. Maybe being a bit more spontaneous? Reconnecting with old friends, spending more time active with my son before he grows up. Staying up late and not paying for it next morning. I don't want to travel or hike or run a marathon since I didn't do those things before ...I would just like a normal life where I can be a bit more reckless every day.
     
    alkt, Joh and AndyPR like this.
  20. Dainty

    Dainty Senior Member

    Messages:
    1,720
    Likes:
    2,292
    Seattle
    If I had never come down with ME/CFS, I would have married young to the first guy I dated, had a bunch of kids by now, and living life in a quiet frenzy convincing myself I was content in a religion that wasn't okay with me being myself.

    My illness forced me to consider a different way of living, that broke me out of the cult-like brainwashing I was raised with.

    Now, I'm free to be me. After a couple wild years happily single with TONS of good dating stories I'm with the love of my life. Now I'm getting treatment that addresses the core of what would have become health issues later, if not sooner. Now, I know how to articulate my emotions, how to set boundaries, and how to walk away from both people and "things" that don't work for me personally. I'm more self-aware now than I ever would have been in my old life, I'm more functional, lots happier, and I know I'm going to live the rest of my life from that angle regardless of what direction my health takes.

    I'm not always this bright happy optimistic person, I mean yeah I could have maybe made the olympics if I hadn't got sick, or done something with my singing-songwriting, or right now be traveling the world. But I know I wouldn't have been as happy, as relaxed, as settled as I am now.

    I'm going to stop before I get too corny. Because this illness also gave me PTSD and fucked up my life pretty bad. It just happened to also change the course of my life for the better, too. My two sisters went the route I would have gone, so I have a good picture of what it would have been like had I not become severely ill when I did. It's not pretty.
     
    Rlman, ahmo, Izola and 14 others like this.

See more popular forum discussions.

Share This Page