Finding Balance in Life When Managing Multiple Health Conditions
If I were to describe all of the health conditions I have, I’d need more column space. Each aspect of my health entails a unique story that requires explanation to understand the complexities. It’s challenging to balance all of the coexisting health conditions while maintaining my sanity.
At an appointment with the pulmonologist last week, I had a new experience. The cystic fibrosis (CF) nurse coordinator and I sifted through the multiple disciplines involved in my care. She acknowledged how difficult my life is, as I must juggle doctors in four states and at least 20 healthcare providers. It’s exhausting on a mental and emotional level, and it takes a toll on me physically as a result.
Because of this conversation, I felt seen as a whole person for the first time. Managing my care is a full-time job. When work is added to the mix, along with maintaining my home and other responsibilities, trying to live a somewhat normal life is a lot to handle. It’s hard to do everything by myself.
It felt like she gave me permission to release the pent-up emotion I’ve held in my gut for so long. Carrying all of these things by myself is heavy, and balancing them seems nearly impossible. I appreciated the validation that what I must do every day is hard.
Functioning on autopilot is how I survive. I just do the next thing that needs to be done without even thinking about how many steps it involves. It’s what I’ve always done, but it isn’t sustainable.
My typical mode of operation is to go full throttle until I burn out. Then, I must pick up the pieces when I break down and cry. But I can’t keep pushing myself to that limit and expect to be healthy.
Finding balance has been a continual learning curve for me. Depending on the season of life that I’m in, finding that balance looks different depending on which health challenge I’m dealing with at the time. I must constantly shift, reshuffle, and adjust to new normals.
By failing several times to strike the right balance, I’ve learned several lessons. Balance doesn’t mean pretending I am handling everything while falling apart at the seams. It isn’t about bottling up traumatic emotions and imploding when it becomes too much. It isn’t about painting a smile on my face while my insides are crying out in despair.
Balance means saying no to things when I need to rest, without having to explain why. I shouldn’t have to explain why I need to rest because my body operates differently than able-bodied people’s bodies.
Balance means feeding all the parts of me — my body, heart, mind, and soul.
I’m always trying to find the balance between wanting to go faster and allowing my body to go slower. Accepting where my body is at helps me to balance my expectations of what I can do in this season of my life.
I’ve learned that if I fail to achieve balance, it takes a long time to bounce back to equilibrium. I’ve also found that being intentional with my time is essential to my well-being.
How do you keep your balance when it feels like the odds are stacked against you? Or when you must constantly keep your health in check, otherwise something catastrophic might happen?
Each of us must figure out what balance means to us. My definition of balance won’t be the same as yours.
I can tell you that taking it one step at a time, one moment at a time, and doing the best with what’s in front of you will help to keep you sane.
Perhaps the biggest lesson I’ve learned about balance is knowing when I need to be humble and ask for help. As my CF nurse coordinator might say, “Come here and let us help you.”
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Tim Blowfield
Lara 'all of the health conditions' you have. The more I understand CF the more I understand how complex it is and how little I know of it. Too often it is thought of as just a lung disease, some see it as affecting the pancreas and bowel. But the faulty Chloride transport seems to cause issues much more widespread. The failure may be expected to lead to high intracellular Chloride that needs balancing with high cation levels (Potassium, Calcium, Sodium and Magnesium). These high cation levels may be expected to cause havoc with cell function in many organs, heart, Adrenals, Parathyroids, even the brain. How severe each organ is affected varies. These are often called co-morbidities but are they? I suspect that too often are the result of the faulty CFTR protein.
Tim Blowfield
Further to my previous comment;
PwCF who have had lung transplants will still have the faulty CFTR protein in all other cells. It is probable that they may benefit from the new Modulators/Potentiators. Need much research.
PwCf on these new drugs: please report whether the 'co-morbidities' improve or not.