February 21, 2020 at 5:28 pm #14666Jenny LivingstonKeymaster
Today I woke up with a nasty head cold, and in an effort to distinguish today’s symptoms from the ones I normally have, I’ve found myself saying that I’m “normal people sick.”
Everyone I’ve spoken with today has totally understood what that means for me. But if I were to say that to someone outside my CF/chronic illness community, I’m not sure they’d understand. And that got me thinking…. are there certain words or phrases we use, kind of like a code, to describe how we’re feeling without having to go into detail?
“Normal people sick” for me, means that I’m dealing with a virus or other acute illness on top of CF.
“CF sick” means that I’m experiencing an exacerbation. “CF sick” usually leads to a hospital stay.
“I’m hanging in there” is usually accompanied by a forced smile and means that, while I’m probably feeling pretty terribly, life must go on. It might be by a tiny thread, but I am indeed hanging in there.
“Brain fog.” This one is hard to describe to anyone who hasn’t experienced it. But if you’re like me, you read those words and can almost start to feel the fog rolling in.
“I’m going to bed” rarely means that I’ll actually be sleeping.
Similarly, in our house “resting” is synonymous with ” “I won’t be sleeping, but my body needs a break.”
Do you use any words or phrases that have a deeper meaning? Do people outside your circle know what these things mean, or is it a code that only a few understand?
February 24, 2020 at 4:40 pm #14668Tim BlowfieldParticipant
What is normal. In a Physiology practical some 55 years ago my lecturer wrote “Whats normal? I am! but how do you know the frog is?”. We (his students) all wanted to know how he knew he was.
But we do need the concept – often confused and vague – to help us make sense of ‘it all’.
CF is such a chameleon of a disability (I purposely refer to is as such , not a disease). It leads to a multitude of disease now known to affect almost every organ in the body, or should I say ‘every’. I haven’t yet seen a direct effect on brain function but it certainly has indirect effects.
I believe referring to CF as a disability rather than a disease has merit especially in Australia when people are dealing with the NDIS (National Disability Insurance Scheme) who have knocked back applications from CF’ers who applied as having it as a disease.
Also CF as a disability refers to the actual mutation. A baby may have CF but usually has perfectly normal lungs. It is that disability that leads to the development of disease, lung disease, maldigestion, infertility, and as we get older we find more – cardiomyopathy, Adrenal disease, Hyperthyroidism all caused by that faulty gene causing abnormal Chloride transport.
While we must not stop treating the diseases, the new modulators are wonderful in that they act to ‘normalise’ the Chloride channel thereby normalising the mucous in the lungs and on other mucous membranes but also normalising the electrolytes within the cells.
As CF’ers get older we are seeing more and more of these other diseases associated with CF. For this reason the modulators are great in that by being taken orally they should be active in every cell of the body. For this reason I advocate that modulators be continued after a Lung Transplant. And gene therapy should be directed at correcting the faulty gene in every cell in the body.
February 25, 2020 at 9:49 am #14674Christina KolassaParticipant
I totally get what you’re saying. This week my son, with CF, got “normal people sick”! His CF carrier brother got a virus and passed it to him. It’s such a different feeling knowing that now that he’s on Trikafta and his body is functioning more normally, that this sickness is going to pass without major pulmonary setbacks! I’m so tired of hearing that lung function can’t be recovered and we need antibiotics for every little illness. We have strong bodies that can fight these “normal people” illnesses. By the way, I’ve always considered my CF kids as normal people!
- This reply was modified 1 month ago by Christina Kolassa.
February 25, 2020 at 10:03 am #14676Jenny LivingstonKeymaster
@ckolassa I generally think of myself as a normal person too (but then again, what is normal? Hah!) but this is a good way to let my know family know that what I’m dealing with is a virus rather than a CF exacerbation. I don’t know when I started using the term “normal people sick” but it just stuck! Regarding Trikafta… it’s been really bizarre to see and feel the differences in the way my body has handled this virus compared to how it handled sicknesses pre-Trikafta. I’m not out of the woods yet, but I’m moving in the right direction for sure! I feel so grateful that this is the case!
February 25, 2020 at 4:30 pm #14689Tim BlowfieldParticipant
Attitude makes a HUGE difference and what is wonderful is the attitude of so many CF’ers. ‘We shall overcome’ is not just a negro spiritual hymn but is the attitude of CF’ers that helps them achieve huge amounts. I prefer to consider CF itself as not a sickness but it is a disability. The mutations do predispose to sickness but are not themselves the sickness.
This is important especially in Australia when dealing with Government bodies such as the NDIS. They will not fund persons who are just sick but with a disability – that is a different matter.
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