Trikafta Fog: The Only Way Is Through
by Emma Boniface who shares her lived experiences of cystic fibrosis, complex ptsd, and managing difficult emotions around living with a chronic illness
If I tried to explain what the Trikafta fog feels like it would be a thick, heavy smog. The kind of grey haze where you can’t see passed your nose. Like you are lucid dreaming, everything feels frightfully slow as if you are stuck in the mud with lead legs.
Being lost in the most familiar of places. As if you have fallen between the cracks of your own worn down body, left wandering a mindless abyss.
A misplaced thought. A forgotten recall. A sleepless night. An altered mind.
You feel alone.
It is a strange, vacant mist that swirls below the clear blue skies. I can see the opening above, hidden amongst the weighty clouds but I just can’t quite reach it.
The Crisis
I often wonder if this fogginess is a side effect or an identity crisis after fighting for continued progress of existence against all odds.
Since starting Trikafta, life as I’ve always known is no longer the same.
Identity Crisis (noun)
a period of uncertainty and confusion in which a person’s sense of identity becomes insecure, typically due to a change in their expected aims or role in society.
Or was living with Cystic Fibrosis before Trikafta the identity crisis itself?
A Triumph And A Defeat
I hoped for this breakthrough, for this medical miracle that would put an end to the relentless coughing. For thirty two years I dreamt of a time when breathing would be painless and here it is.
Just as I hoped for this second shot at life; I held hope that all these side effects are somehow associated with finding my new identity. That version of myself I was always destined to be.
An adjustment period.
Yet after sixteen months on Trikafta, twelve of those months at a very reduced dose, I know deep down these side effects are here to stay. No amount of growing into my new “sick girl free” skin is going to shed that drug induced fog from my mind or subdue the pea soup horizon ahead.
What Helps, What Hinders
Lists
Lots of lists. Written, typed, memo’s, diary entries, reminders. Everywhere. It is the only way I am able to keep up to date with my “to-do” and even then it can still feel as though I am swimming against the vivacious tide of Trikafta fog.
Speak To Your Team If You Are Struggling
My team still check in on how much the side effects are interfering with my everyday life, this is a great support on those less than great weeks when it feels like my mind is a million miles away.
Good Sleep Hygiene
Creating a healthy sleep routine and really sticking to it helps. Blackout blinds and eye masks to minimise light interference, earplugs if you live in a city or by a busy road. Hypnotic sleep apps or pre-recorded sleep stories are a great help. Yoga to unwind before bed, low lights, minimal screen time and meditation practices seem to all help disable the infamous Trikafta insomnia.
Don’t be Afraid To Ask for help…
Or admit that you are struggling. Speak to therapist to help move through the frustrations and emotions that come with the Trikafta fog. Be honest with friends and family so they know how difficult it is adjusting to this new way of working. Delegate tasks where possible to minimise what is on your own plate. Reach out to the wonderful CF community online, we are here and we are listening.
A Final Thought
One thing Cystic Fibrosis taught me is there is always a trade off. A price to pay when healing. I’m learning to live with this healthier, almost super human version of myself whilst navigating side effects. It turns out the deal is different but the small print is just the same.
Have you suffered with drug induced side effects? Are you making a trade off between being healthy and unwell? Can you relate to anything in this article? Share your own experiences and reflections in the comment section below, I would love to hear from you!
Read More Articles Like This:
- Possible Causes & What You Can Do If You Are Experiencing Side Effects To Kaftrio
- Kaftrio: An Entire Month feeling Super Human
- Why I Paused The Superhuman Months To Stop Kaftrio
