A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

What is your lifestyle like?

Discussion in 'Lifestyle Management' started by enginewitty, Jul 27, 2018.

  1. enginewitty

    enginewitty

    Messages:
    53
    Likes:
    71
    Hoping to create a resource here that can give some general clarity on what we're all going through in one post.

    In bullet points (to make things easy for everyone to scan), please list a brief description on what your lifestyle consists of and your average energy level (1-10) compared to your energy levels when you were healthy.

    a brief description of how you deal with this would be very appreciated.

    thanks to anyone in advance who wants to throw in their 2 cents :)
     
    lior, AnnaDove, Pisgah and 4 others like this.
  2. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    692
    Likes:
    977
    Germany
    Description:
    - In bed 90% of the day
    - In low-to moderate pain for several hours most of the days, pain is generally manageable
    - Can use a computer from bed, can listen to podcasts
    - Can cook my own meals (but usually don't because it exhausts me)
    - Can play piano for 30-60 minutes
    - Can go for short walks with the dog
    - Can watch sports (tennis, soccer, formula one) and news channels, but can't read books or see movies (brain not able to follow plot)

    Energy level: 1-2 (depending on the day)

    How I deal with it:
    - Mom helps a lot with everyday stuff (cooking, cleaning room, shopping etc.)
    - Parents help financially, so I can continue living like this from a financial perspective
    - Worrying a lot that something could happen to mom (age 67) before I get better and can care about myself
    - Antiviral treatment (Valacyclovir) plus some supplements (Lysine, vitamins) brought some improvement, but not much
    - Watching news, PR, etc. for advances in CFS or new treatments I could try
    - Mom is a doctor, so I generally have access to all treatments
    - Trying not to think of how much worse it must be for some other people (with worse symptoms, struggleing financially, no access to treatment options etc.)
     
    lior, Mel9, Pisgah and 7 others like this.
  3. otterjack

    otterjack

    Messages:
    75
    Likes:
    99
    Manchester, UK
    • Can go out almost every day. Do minor shopping trips and go for coffee (alone)
    • Surf the net
    • Play chess and scrabble on my phone
    • Meet a friend approx every two/three weeks
    • Try to save a large proportion of my energy for going to the gym (yes, really). Workouts are low level.

    I deal with it by:

    • setting my own pace and doing everything on my own to my own timescale.
    • I live alone, so no-one else to consider.
    • Taking Melatonin to assist in getting to sleep.
    • Being thankful I am 'only' moderately affected (though this changes to severe if subject to ANY pressure.
    I guess my energy is approximately 4. Though, being honest, I can't remember ever not being tired.
     
    Pisgah, Stretched, alkt and 1 other person like this.
  4. Stretched

    Stretched Senior Member

    Messages:
    442
    Likes:
    475
    U.S., Southeast
    Long term PWC, 30+/- years affected

    *I rest a lot. On sofa half of every day
    *on computer, reading and surfing; interacting on forums
    *Try to walk daily at least 5-10 minutes
    *Frustrated, can’t find decent primary care doctor.
    *Difficulties with sleep
    *peripheral neuropathies in feet - feel burn, numbness.
    *Do chores laggardly
    *worry about what’s CFS and what’s independent (re health)
    *Function at ~3-4 level
    *Isolation troubling and depressing
    *Not optimistic about cure
    *Take many supplements but unsure of efficacy
     
    Last edited: Aug 4, 2018
    Pisgah, E.man and alkt like this.
  5. alkt

    alkt Senior Member

    Messages:
    322
    Likes:
    635
    uk
    unfortunate choice of words lifestyle implies choice in how we live . my so called choices have become more limited as each decade passes . I am mostly house bound but fortunate in that I am very rarely bedbound . if I had not moved back home with my parents I probably would not be here today . I could cook a basic meal but then would not eat it doing food prep even making a sandwich just takes away any appetite I may of had.
     
    Pisgah and Stretched like this.
  6. Dechi

    Dechi Senior Member

    Messages:
    1,133
    Likes:
    2,162
    I try to find a balance between overdoing it and resting too much.
    Go out to buy groceries maybe 2-3 times a week when I can (if not, I have it delivered)
    Do small increments of a few seconds of exercise on good days
    Watch tv
    Read the newspaper
    Try to have small projects that I can do at my own pace
    Walk the dogs when I can
    Surf online
    Play games
    Rest, rest, rest on the sofa. About half the day. 2 hour nap often.
    Sleep for 7-8 hours.
     
    alkt, Pisgah and Stretched like this.
  7. Aerose91

    Aerose91 Senior Member

    Messages:
    1,166
    Likes:
    782
    Can i ask if any of you work? How do you stay afloat
     
    alkt likes this.
  8. otterjack

    otterjack

    Messages:
    75
    Likes:
    99
    Manchester, UK
    Did you mean financially? I'm not able to work and receive 'benefits' on the basis of my illness. I'm lucky in the sense that I was awarded PIP a couple of years ago and that's really helped me financially.

    It must be very hard for those who don't qualify for disability benefits.
     
    alkt likes this.
  9. Aerose91

    Aerose91 Senior Member

    Messages:
    1,166
    Likes:
    782
    I applied for disability several times but was rejected on all of them because i didn't have a diagnostic coded disease. How did you receive yours if i may ask?
     
    alkt likes this.
  10. otterjack

    otterjack

    Messages:
    75
    Likes:
    99
    Manchester, UK
    I don't know were you're based - are you in Britain? I applied for PIP (Personal Independence Payment) and, after a long drawn out process, was awarded it.

    PIP is awarded based on how your condition or disability affects you, not on what the condition actually is. You are assessed on your mobility and your ability to care for yourself and carry out daily living tasks.
     
    alkt likes this.
  11. otterjack

    otterjack

    Messages:
    75
    Likes:
    99
    Manchester, UK
    I'm sorry to hear that you didn't qualify - what's the criteria where you are for being awarded disability? And how do you cope at the moment?
     
    alkt likes this.
  12. otterjack

    otterjack

    Messages:
    75
    Likes:
    99
    Manchester, UK
    I am so useless at this 'quoting' lark! I just quoted my own post!
     
    alkt likes this.
  13. Aerose91

    Aerose91 Senior Member

    Messages:
    1,166
    Likes:
    782
    Oh, no. I'm in the U.S. Totally different social safety net systems
     
    alkt likes this.
  14. otterjack

    otterjack

    Messages:
    75
    Likes:
    99
    Manchester, UK
    Yes, I believe so. It's been difficult for a long time to claim disability benefits over here, but since they started messing around with the system and changing things, it's even worse. I was utterly astounded when I was awarded something as I fully expected to be turned down.
     
    alkt likes this.
  15. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    You will find a large difference in lifestyle depending on whether the ME/CFS is very severe, severe, moderate or mild.
     
    alkt and IThinkImTurningJapanese like this.

See more popular forum discussions.

Share This Page