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5 dilemmas faced by the chronically ill as they age (from an ME/CFS viewpoint)

Discussion in 'General ME/CFS News' started by MeSci, Nov 9, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Cornwall, UK
    Source: Psychology Today

    Date: November 8, 2018

    Author: Toni Bernhard


    5 dilemmas faced by the chronically ill as they age
    It can be hard to know what is due to aging as opposed to chronic illness. I've been concerned lately. Here's why.

    In 2001, I got sick with what the doctors assumed was an acute viral infection, but I never recovered. I'm mostly housebound, often bedbound.

    My diagnosis is the little understood (but much misunderstood) Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. I describe it as 'the flu without the fever.' This means that fatigue is only one of many symptoms I contend with every day. In addition, before I got sick, I suffered from a couple other chronic conditions, such as painful Interstitial Cystitis (IC). If I'm in an IC flare, it exacerbates the symptoms of my ongoing ME/CFS.

    I'm now 17 1/2 years older than when I became chronically ill in 2001.

    I've started to notice some bodily changes, and I can't tell if they're due to a worsening of my illness or if they're a natural part of the aging process. I know from emails sent to me that others in my situation face the same uncertainty.

    Rest of article at link.
    Last edited: Nov 9, 2018
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Good article, but I would say there are more than five things of concern for aging with a chronic illness. One is, what happens if my significant other falls off his perch? How do I get by in daily living when he does so much for me? Will I need to go into a rest home? My life will certainly be much smaller than it is now, and it's already small. Will I have to give up my pets? Move house? Might I get worse because there isn't anyone to help me? I will be even more isolated. What if my significant other gets really ill - how do I care for him, when I am so often house, or bed bound? What if I develop another chronic illness?

    I'm sure there are lots more examples. Good article though to get me thinking. Thank you @MeSci
  3. Manganus

    Manganus Established Member (Voting Rights)

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    Canary islands, Spain

    The idea of "five dilemmas" is probably most of all a mode of story-telling.
    andypants and ladycatlover like this.
  4. Trish

    Trish Moderator Staff Member

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    I think most of the items listed in the article apply to anyone with a disabling chronic illness of whatever age. If we get an extra symptom or a symptom gets worse, we are faced with the dilemma of whether it's related to our ME or not. And if we reach the stage of needing more care than we have available from family members, we are faced with dilemmas about how to access that care. Again that can happen at any age.

    And in a way it's harder for young people. At least an elderly ME sufferer like me could if necessary go into sheltered housing or a care home. There isn't any suitable equivalent for younger ME sufferers. I worry more about what will happen to my daughter, who is in her thirties, if I get too sick to care for her, rather than for myself. There are no supported facilities she could move into. If I could, I would put us both in a sheltered housing scheme with care on call when needed. You have to be over 65 to live in any of those in our area.

    Edit to add. The crazy thing is, my ex husband, who is a very healthy 71 year old who goes out dancing, cycling, hiking etc. lives in a rented flat in a sheltered housing scheme for over 65's just because it gives him security of tenure and is cheaper than private renting, but he doesn't even need the available on site managers who organise care when residents need it etc.
    andypants, Snowdrop, rvallee and 7 others like this.

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