Self-help Survey Simplified:

After some very helpful feedback I’ve decided to simplify my self-help survey. It seems that it was too overwhelming, and I totally understand. If any of you reading this are completely recovered and have the stamina for the full survey you can find it here, otherwise I would be really grateful if you could answer any of the questions below. Please feel free to answer as much or as little as you like either as a comment or in an email to me.cfs.selfhelp.guru@gmail.com.
Please help me learn more about what has helped you cope with, manage and recover from ME/CFS. I am interested in the things that we can do to get better and live happy and fulfilling lives. Most of what I write about is what I have learned from my experience, from all the things I have tried and from the many books I have read in my plight to recover. But I am aware that many people experience this condition in different ways and different people find different things helpful. I would like to gather as much information as possible to create a self-help resource that will have something for everyone. I will publish what I learn from this informal survey both on this blog and in the self-help book I am writing. Help me help others by sharing your positive experiences! Thank you so much for your time and energy!
  1. What sort of things do you do to manage this illness?
  2. What is the most useful advice you’ve received about illness management?
  3. Do you have to take measures to improve your quality of sleep? What works best for you?
  4. Do you think exercise is helpful for this condition? How do you exercise?
  5. Have you made any changes to your diet that have helped? What changes?
  6. Which supplements have you found to be useful?
  7. Have you developed any food intolerances/ gut problems/ blood sugar problems since having this condition? What has helped you with these issues?
  8. Have you tried relaxation techniques/ meditation/ yoga/ tai chi? How useful did you find it/ them?
  9. How do you keep your spirits up? What helps you to be happy?
  10. What support from family and friends have you found to be most helpful?
  11. Have you had any help from a doctor or alternative health practitioner that has made a real difference? Would you recommend any kind of treatment?
  12. What do you think is the most important factor contributing to improvements in your health?            

Thank you once again for answering whatever you could. Hopefully together we can make life easier and happier for other sufferers of this condition whilst we are waiting for a cure.
 

4 thoughts on “Self-help Survey Simplified:”

  1. Look at all aspects of your life, career, family, money, inner feelings, relationships etc. Make the decisions to improve specific areas of your life. Write them down and be very clear about what you want to achieve.

    Reply
  2. Here is a response from Kate who emailed me but has kindly given her permission for me to publish it as a comment. I think it gives a wonderful picture of the many things we can do to help oursleves. Thank you Kate.

    1. What sort of things do you do to manage this illness?
    Regular well managed pain relief during bad times to avoid low mood and lack of sleep.

    Pacing. Small activity with lots of rest. One bigger activity with days of rest either side.
    Healthy diet. Regular meals and healthy snacks. Reduced caffeine/ sugar, no alcohol.
    Prepare large amounts of food when having a good day. Freezing in smaller portions so don’t have to cook on bad days.
    Internet shopping and delivery.
    Hiring a cleaner every other week to do the bigger cleaning tasks.
    Regular massage to reduce muscular pain, improve mood, relax.
    Microwave heated bean bags for aches. Frozen peas for pain. Muscle rub helps too, espcially with my lung muscles when its effort to breath
    Routine. Trying to do the same things every day at the same time. Try to avoid moving from routine on a good day (easier said than done!)
    Keeping a diary/ lists so not to forget things to do.
    No late nights.
    Counselling to help come to terms with the loss and negative feelings that the illness brings; to have a space to moan where you;re not judged; space to explore ways in which you can change to your life make the most of it.
    Learning to put your pride a side and ask for help.
    Putting yourself and you’re needs first. Being assertive with this e.g. at work.
    Prioritising what is important, and not stressing about what is not.
    Reduced technology use e.g. length of time using TV, computer, phone.
    Information and knowledge

    2. What is the most useful advice you’ve received about illness management?
    All of the above….they all work together. Little things make a bigger difference. Most of the above is from internet people who themselves have suffered.

    3. Do you have to take measures to improve your quality of sleep? What works best for you?

    Yes. Regular pain killers before pain starts; warm aromatherapy bath with candles, no lights on; dimmed lights to relax before sleep; a fan; my favourite feeling blankets/ sheets; a warm milky drink; my cat! Sometimes take herbal remedies to help sleep. Going to sleep at the same time every day.
    4. Do you think exercise is helpful for this condition? How do you exercise?

    I find that very short, slow walks here and there can be helpful in building up strength and getting me out and about/ cheering me up.
    I use daily living activities as exercise mostly, anything else is too much!

    5. Have you made any changes to your diet that have helped? What changes?

    Yea. Cut out bread and pasta. Drinking lots of water. Yakult. Lots of protein e.g. eggs, chicken

    6. Which supplements have you found to be useful?

    I take Berrocca. Would like to try more/ different things but I have no idea where to start in looking for things to help!

    Reply
  3. Kates response continued

    7. Have you developed any food intolerances/ gut problems/ blood sugar problems since having this condition? What has helped you with these issues?

    Yep….nothing as yet.

    8. Have you tried relaxation techniques/ meditation/ yoga/ tai chi? How useful did you find it/ them?

    Relaxation techniques. Deep breathing in darkened room whilst resting. Visualisation of places that you feel good/ happy when stressed/ anxious/ feeling unwell. I imagine being outside with the sunshine on my face. Tensing up muscles from bottom (feet) to top (head) to help relax.

    9. How do you keep your spirits up? What helps you to be happy?

    Twitter. Cuddles with my cat. Counselling. Laying in shade in sunshine with sunglasses on. Getting a massage or hair cut. Achieveing small targets. Movies. Days when I’m accepting of my illness.

    10. What support from family and friends have you found to be most helpful?

    Helping with practical tasks such as washing up, changing bed linen, driving me places, buying food/ cooking food. Phone calls/ texts/ occasional visits for short periods of time. Talking about life that continues outside of the M.E bubble.
    I think it is important to educate friends and family right from the beginning, so that they too have time to come to terms with changes and can adjust.

    11. Have you had any help from a doctor or alternative health practitioner that has made a real difference? Would you recommend any kind of treatment?

    Massage therapist- acupressure has been helpful for me. Has a knowledge of Chinese medicine and what the different aches and pains might mean from that perspective.
    Counsellor- I described myself as a busy buzzy bee before I became ill, now I have to be a monk in a retreat. He advised me to think of things that provided the bee part of me with the honey it needs to be happy, which could continue to allow me to be a monk. So to find activities/ projects that allow me to be happy and well at the same time.

    12. What do you think is the most important factor contributing to improvements in your health?

    Time. Patience. Self Love.

    Reply

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