Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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What is your lifestyle like?

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

  1. enginewitty

    enginewitty

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    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

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    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.)
     
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  3. otterjack

    otterjack

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    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.
     
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  4. Stretched

    Stretched Senior Member

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    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
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  5. alkt

    alkt Senior Member

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    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.
     
  6. Dechi

    Dechi Senior Member

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    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.
     
  7. Aerose91

    Aerose91 Senior Member

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    Can i ask if any of you work? How do you stay afloat
     
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  8. otterjack

    otterjack

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    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.
     
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  9. Aerose91

    Aerose91 Senior Member

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    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?
     
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  10. otterjack

    otterjack

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    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.
     
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  11. otterjack

    otterjack

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    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?
     
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  12. otterjack

    otterjack

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    Manchester, UK
    I am so useless at this 'quoting' lark! I just quoted my own post!
     
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  13. Aerose91

    Aerose91 Senior Member

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    Oh, no. I'm in the U.S. Totally different social safety net systems
     
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  14. otterjack

    otterjack

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    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.
     
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  15. Hip

    Hip Senior Member

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    You will find a large difference in lifestyle depending on whether the ME/CFS is very severe, severe, moderate or mild.
     
  16. Nightingale

    Nightingale Chronically Cool

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    Hey guys, here's my list:

    - Able to go out 3-4 times a week for 1-2 hours. Grocery store, coffee shop, library
    -Have muscle aches, fatigue and brain fog as my biggest symptoms.
    -Take 2-3 rests with eyes closed per day (listening to podcasts), a nap if I've had a really bad day.
    - I use pre-rests before going out or doing anything strenuous, like a shower.
    -Have a lot of quiet time on the couch every day. Only able to manage a few hours of at home activities like cleaning, sewing or cooking.

    I'm able to deal because:

    - My husband is my carer and is very loving and supportive.
    -My GP is very lovely. There's not a lot to be done for me, but she manages what she can. We get regular blood tests and different things checked out.
    - I utilise a pedometer and energy logs to track when I'm doing too much and what tires me out the most.
    -I use my hobbies and imagination to deal with the loneliness and dreariness. I love sewing, fashion, and anything to do with fashion history - books, movies, or podcasts.
    -I use self compassion to try to beat myself up less and comfort myself on the bad days.
    -Unfortunately, my bio family is very unsupportive and we have no contact. So my friends, support group and this forum are more helpful for me.

    Hope this helps. :)
     
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  17. enginewitty

    enginewitty

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    thanks to all those that have contributed :)

    I hope this can help increase clarity for others dealing with this.

    if anyone else would like to add to this, please remember to state your energy levels now (on average) in relation to your energy levels before when you were healthy.

    thanks in advance
     
    alkt likes this.
  18. Wolfcub

    Wolfcub Senior Member

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    SW UK
    My energy levels were great before I got sick 6 months ago. I always lived a fairly athletic kind of life -nothing spectacular -but able to cope with most outdoor adventures, and able to haul a lot of logs!
    I felt great for my age and could run rings round most people my age.
    I didn't honestly feel a lot different at 64 than I felt when I was 30.
    Then I caught some bug.
    Usually my immune system threw bad bugs off after a couple of weeks, and I recovered totally and back to usual fitness, or didn't even catch them in the first place. I used to go 3-4 years without catching a cold even.

    At first my energy levels were maybe 20%. Dire, and I could hardly do a thing. That was for about the first 8-9 weeks.
    Then things improved, and there were fluctuations. On some days I felt much better but still a strange "tiredness" in the background, so I guess my energy was at 50% compared to what it had been.
    Then there were days when I went back to about 30% and still on-going symptoms. It wasn't just about "energy". It was about still feeling sick.

    Now I have better energy levels (6 months later almost) But I am no way anywhere back to being what I was before. And at any time I have relapses.

    My lifestyle is not so bad really. I am pretty functional (so "mild" on the CFS scale, I guess) but there are days when I feel absolutely rotten.
     
    alkt likes this.
  19. Misfit Toy

    Misfit Toy Senior Member

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    My lifestyle is so odd. I have been ill for 29 years. It affected my brain the most and I had fatigue but also full on hormonal issues after EBV. I was able to go to college part time for 10 years, work part time, live on my own and fully function.

    I am now on 29 years. I have had many surgeries, many things go wrong. Diagnosed with Sjogrens when for years I thought I had CFS. Also, CVID, hypothyroid, celiac, tinnitus, POTS, hyper mobility spectrum disorder. My life since my thyroid removal has been poor. I am exhausted.

    I go out several times a week for errands. I used to go to the movies all of the time and now I rarely do. I feel like I am boring. I come alive at night. I sleep til after noon. This makes me feel like a loser. Why can't I get up early or go to bed early? Adrenals. I am awake at night. I watch a lot of TV. I NEVER read and I used to be able to read a book. Cognitively I am much worse.

    I love music and Netflix. I try to take naps or rest everyday. Sometimes I just lie there and rest. I live alone and must have contact with one person per day. I need connection and enjoy speaking with people I click with. So, this is very important to me. Even if it's just a text of someone saying HI.

    I used to wear a full face of makeup and now I just wear foundation and blush. I can't be bothered anymore.

    I try to cook everyday. I do cook everyday for the most part. I have celiac, so I can't eat many processed foods.

    When I am well enough, I work and make jewelry. That is very sporadic.

    I run to the pharmacy or to a grocery store. I had groceries delivered for the first time a few weeks ago. I found it expensive because I had to order $60 worth, but it was cool.

    I really just try and take care of myself, what needs taken care of with my car, or paying bills. I worry about money a lot.

    I try and enjoy little things like movies and music and knowing that I am not alone.

    My energy is poor. I spent today in bed. I think about how I went to college years ago and wonder how did I ever do it. Plus, work. And, I had a social life and that was with CFS. Now, there are days I can't stand up without dizziness. I am so much worse. I have a shower chair due to pain in my back but it's also great for my POTS.

    I dance at 3 am. That shows you how weird my schedule is. Wide awake at 4 am.
     
    Last edited: Sep 16, 2018
    alkt likes this.

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