International ME/CFS and FM Awareness Day Is On May 12, 2018
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M.E. patient's family & friend letter

Discussion in 'Lifestyle Management' started by Nielk, Jan 11, 2012.

  1. Nielk


    From: The Hummingbirds' Foundation for M.E.

    M.E. patient's family and friends letter


    I'm giving you this letter to let you know that due to illness I am going to have to cancel/delay/modify our planned get-together.

    It is important to me that you understand that the problem is not fatigue. That is a normal part of life. Tiredness wouldn't stop me seeing you any more than it would stop you seeing me!

    The relapse of M.E. symptoms caused by physical or mental overexertion is another kettle of fish entirely and quite a long way from anything healthy people would experience

    Problem one: When I overdo things I experience problems such as inconsistent CNS (neurological) function, cardiac insufficiency and an inability to maintain homeostasis.

    These problems can cause symptoms such as:
    Moderate to severe low blood pressure.
    Heart problems such as a very high heart rate, chest pressure, heart pain and a fluttering and straining heart.
    Feet burning painfully and turning blue/purple on standing.
    Breathlessness and air hunger.
    Feeling very nauseous and as if 'poisoned.'
    Poor sleep, and difficulty getting to sleep.
    Poor digestion.
    Vertigo, minor seizures, blurred vision and/or muscle pain and weakness.
    Severe pain at the back of the head, where the head meets the neck.

    These symptoms can be very scary and unpleasant to live through particularly as often many of them occur all at once and often in unpredictable patterns.

    Problem two: These worsened symptoms are also always accompanied by:
    A further reduction in the time able to be spent upright or being mentally or physically active in a day - which means difficulty with the many small tasks that make up my usual routines of daily living.

    Most of these symptoms and disabilities really hit hard around 48 hours after overexertion, rather than during the actual visit. These problems can last for days, a week or two or more after a visit. Sometimes the reaction can last months.

    Which activities will cause me to overexert varies a lot from day to day and week to week depending on how much I have been doing lately, as well as my overall health.

    Problem three: Repeated overexertion leads to disease progression in M.E. So this means that however I may be tempted to do more than is wise for me to do, I should not, because the long term consequences can be so dreadful for me.

    I am so glad that you continue to make time for me in your life, as I do very much value our friendship. I am sorry that I can sometimes be unreliable. Believe me, I find all this far more frustrating than you do, as I live with it all the time.

    If you'd like more information on M.E. please check out the HFME website, videos or books. Thank you so much for taking the time to read this
    CJB, ahimsa and L'engle like this.
  2. Enid

    Enid Senior Member

    Thanks Nielk - what a lovely site Hummingbirds.
  3. Ocean

    Ocean Senior Member

    I like this. It's very clear and can easily be modified to meet one's individual symptoms. I've found that any explanation I try to give about my illness falls on deaf ears and people continue to not "hear" any of what I've told them. Has anyone actually used a note like this with any success? Thanks for posting this Neilk.
  4. cgstar4


  5. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

    Southeast US
    I like the idea of a personal letter like this, and in the past have considered writing something similar, with my own specifics. I think a few people I know would read it and appreciate understanding more clearly. However, my experience in giving any details about symptoms is not usually met positively. Eyes either glaze over or there is a comment about thinking positively. My hunch is that the more information I give, the more likely they are to consider me a hypochondriac. The only person who ever asked me seriously how it feels to have this illness was a six year old girl! To my astonishment, she kept asking questions and seemed to be really trying to understand.
  6. Merry

    Merry Senior Member

    Columbus, Ohio, USA
    What a sweet story about the six year old girl.

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