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    • #15401

      I know we are told to “listen to your body”… but sometimes I feel like mine lies.

      I have a few examples and I’d love to know yours!

      One is when I spent weeks thinking my back was the source of my pain (about two years ago) and it ended up being my pancreas and liver in distress instead. It took passing out in New York City unexpectedly and my eyeballs turning yellow to realize that something was not right (and of course, was hospitalized for a stretch thereafter).

      Another time is when I felt completely “fine” but my doctor told me to go to the ER because of troubling kidney levels in my labs. I kept apologizing to the nurse because “I don’t feel as sick as I normally do when I go to the hospital”, and felt I shouldn’t be there… but they ended up being right (and I was hospitalized for acute kidney failure for a stretch thereafter).

      Once I knew that my stomach felt “off” and I was pooping a lot of blood, but I was genuinely surprised when an endoscope found upwards of half-a-dozen ulcers inside, considering I wasn’t in that much pain.

      Sometimes it swings the other way, of course. I know something is wrong and have to wait for medicine to prove me correct. I always want to do an “I told you so dance” when my instincts are right because it feels so good to trust in myself… but, often, my instincts are completely off kilter, or pain deeply displaced.

      Am I the only one who ignores “warning signs” sometimes, because they aren’t always correct?

    • #15414
      Gary Levin

        It is common for patients to be in denial. And the symptoms you have may change as different organs are affected by CF at different times. CF affects all the mucus glands, pancreas, sweat, intestines and even the colon. Ulcers develop from stress and cortisone levels go up during stress. Steroids commonly cause ulcers….Always listen to your body…it knows what is going on. Dont be afraid to discuss all your concerns with you CF. physicians.

      • #15420
        Tim Blowfield

          Yes Gary. CF is a very complex disability. Just to see it as affecting the mucous glands I believe sells it short. Mucous glands are affected by the faulty Chloride transport but that faulty transport should now be recognised as affecting every cell in the body. Chloride not being pumped out means it is retained in higher than ‘normal’ levels within the cells whether the cells are mucous cells or others. If intracellular Chloride (an anion) is high then the laws of inorganic chemistry mean that cations will be high. Thus in the heart and adrenal cells high Potassium and Calcium ions will affect their function. Understanding this electrolyte inbalance does give us an glimpse of understanding of CF and why CF’ers often do not respond as ‘normal’ people dodo many drugs (ie Calcium Channel Blockers), why CF’ers often get hypokalaemia.

          CF is a complex disability that while most commonly affects the lungs and bowel affects the function of every cell in the body. Many symptoms and issues that CF’ers have will only be understood when this electrolyte inbalance is understood.

        • #15426
          Paul met Debbie

            The body is always right.

            It’s the mind that cheats, ignores, blames and lies. The body doesn’t lie. It will die someday, but it does that very sincerely.

            First of all, listening to your body is more than just reacting to the most obvious signs of distress, like pain, nausea, anxiety etc. Most of the time the body has told us all kinds of things by whispering continuously long before, but we didn’t hear or recognise it because we were not attentive and busy with doing lots of things that attracted/distracted our attention. We are ignorant, ignoring the body.

            Listening to the body is not something you should do only after something has gone wrong and the body (or the mind, it’s all one) is screaming in agony- it is a way of life that should be permanently high on your agenda, to prevent things from going wrong.

            It is actually very simple. When hungry, eat. When thirsty, drink. When tired, rest. Try to think as little as possible, just be.

            Although this sounds obvious, most people don’t do this. And they suffer for it. They sleep to little or poorly. When awake, they never rest but are always thinking, doing, experiencing, stressing. They eat and drink at the wrong times, too much, too little and of poor quality. Not to mention all kinds of substance abuse going on. Their attention is almost always directed outwardly, never inwardly. How could they hear the body? No wonder the body protests. And then the protest of the body is mostly ignored or misinterpreted until too late. Then they complain that the body has lied to them. Now, who is cheating here?

            Of course, in the end, the body will fail. Most organs have a large redundancy, so failure will only show relatively late. The human body was not created in a time of laboratories and modern western medicine that can technically remedy all kinds of misfunctioning in an early stage and prolong life artificially by medicine, implants, transplants etc. So the body does not always give an early warning. There was simply no evolutionary advantage to be gotten in that. On the contrary, the best solution the body could come up with to improve survival was to keep working as well as possible for as long as possible without complaints or signs, no matter all kinds of degeneration in the tissues. The body of course is aware of that, but there was no point to bring these problems to the surface of our consciousness.

            Only cases of damage that could improve by a simple change in behavior of the person, would lead to obvious impediments and signs that enter our consciousness – like fever, inflammation, pain, blood-loss, vertigo, nausea, choking, vomiting etc. Then a lesson in behavior was to be learned: stop moving, staunch the bleeding, cool the limb, don’t touch the snake, sit or lay down, clean the stomach and never eat this again etc. But a brain tumor for instance was mostly not correctable by behavior or treatment anyway, so there are not even pain receptors in the brain. Same goes for the lungs. I have never felt an alveolus pop, but my pft tells me lots of them must have. Then, the body just wisely keeps quiet and goes on functioning as best as it can. When systems fail, it tries to compensate with other systems as best as possible. Most healing and compensating in the body go unnoticed anyway. And in the end, dying is the great and wise solution it provides. From an evolutionary standpoint, the body is also right in these cases. It does not lie by not telling us, it protects us.

            Modern medicine is a developments to which the human body has not been able to adapt its working or early warning systems. It does not prove that the body is wrong or untrustworthy in those cases, rather it proves that modern medicine, although convenient, is very unnatural and cheats. It might be beneficial for the individual in the short term, but for survival at large it is not the way to go.


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