• Chronic Fatigue and Tiredness

    Posted by luisa-palazola on August 26, 2022 at 11:19 am

    I feel like we often talk about our classic symptoms with CF — the chronic coughing, is it another infection exacerbation? Or the plethora of GI issues that come up. And, when we don’t have any ongoing symptoms — there’s a lingering symptom that I often shame myself for: chronic fatigue.

    For people with CF, having chronic fatigue is out of the usual, but I don’t think it’s often normalized. And, it comes with (at least for me) a lot of guilt. I’ve been on a miracle study drug*, and my body still gets worn down easier than most everyone else’s body. It’s much better than pre-study days, but it still takes me longer to recover from life than most people.
    I’ve gotten a lot better at practicing self-care and being gentle with myself. But, some days are tougher than others.

    So, how do you deal with chronic fatigue? How do you deal with shame and guilt?

    tim-blowfield replied 1 year, 5 months ago 3 Members · 4 Replies
  • 4 Replies
  • jenny-livingston

    Member
    August 30, 2022 at 1:08 pm

    Luisa, you have read my mind! I deal with chronic fatigue during the best of times, but since my COVID infection in July, it has been worse than I remember it being for a very long time. I’ve found myself needing to nap, not feeling rested even after 8+ hours of sleep, falling asleep during movies with the family, etc. I am simply exhausted all the time right now and, as you mentioned, that comes with quite a bit of guilt.

    One thing I’ve done is remind myself that resting is productive. When our bodies and minds are needing to recover, there is nothing more beneficial than giving them rest. It’s not something I can push through or ignore for very long, so the best way I can be productive is to give myself grace, rest, and kindness.

  • felicia

    Member
    September 17, 2022 at 12:06 pm

    As a momma of a 13 year with CF and having inflammatory arthritis myself, I understand the chronic fatigue and living with an invisible illness. I try to listen to my body and honor when I need rest, sometimes more than others. My daughter and I take Vitassium salt capsules to keep our energy up and then we also get our iron/ferritin levels checked and when they are on the low end, we take SlowFe to boost the levels. Those seem to really help, but sometimes even then we just need a little extra rest. When the shame and guilt creep up from being unable to perform or participate, I ask myself… Are these standards I have set for myself or has society placed these standards upon me?

    • jenny-livingston

      Member
      September 19, 2022 at 10:47 am

      Felicia, I love that last bit you shared. I recently read something similar — when feeling guilty or shameful, ask yourself whose voice you are hearing. Is it your own? Your parents and grandparents? Society in general? Most often, it is not my own voice but that of someone else’s expectations. This has really helped me battle that guilt. Thanks so much for sharing your thoughts here!

  • tim-blowfield

    Member
    October 16, 2022 at 6:56 pm

    CF – can stand not just for Cystic Fibrosis (CFib) for Chronic Fatigue (CFat) or Cardiac Failure (CFail). All three of which are common in persons with Cystic Fibrosis. Our experience is Chronic Fatigue is caused not just by the lung disease – Reva has CFail and Pulmonary Hypertension – all caused by the faulty CFTR gene & protein. So much is overlooked. CFib is so much more complicated than just lung disease. So much needs be done! Trikafta is improving so much more that mucous viscosity. Changes are being seen in organs where there is no mucous. We need to open our eyes to see what is happening.

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