Resilience

At 48 I have weathered many CF storms, chasing the calm that follows a serious infection. These storms have always entailed a hospital admission and the inevitable cycle of PICC,s port,s, Iv’s, physio and rehab most often with a procedure or two (ouch) and on a few occasions some pretty major surgery! It has also provided an opportunity to connect with others and hear their stories of triumph over adversity. Why is it that some people seem to weather these storms better than others and continue to fight, and battle on no matter what?

Resilience is often a term linked with this skill, so, what is it, how do we acquire it and why does it come much easier to some people?

My reading tells me resilience is defined by “the experience of being disrupted by change, opportunities, adversity, stressors or challenges and, after some disorder, accessing personal gifts and strengths to grow stronger through the disruption.” In short, it’s the ability to bounce back after challenges, illness and disappointment. To my way of thinking, this is something that needs to be cultivated in those facing the many “CF storms”, supporting good mental and physical well-being, particularly during our most challenging times. Resilience and learning to become more optimistic can make a big difference in how we see the world, each other and ourselves, inspiring us to make better choices about our health and our lives.[1]

Next question, how do we acquire resilience? It appears that some people are naturally more resilient, finding the silver lining to most things. I know because I am one of those annoying people and it has served me well during my most difficult times. But don’t despair; from what I understand resilience is also a learned skill and can be fostered and developed over time often due to the very challenges we face as carers, partners or people with CF.

Having CF is like being on a roller-coaster with many ups and downs, dragging you from feelings of hope and exhilaration to doubt and despair, sometimes all in the one day. CF can take unexpected turns and give rise to many complications along the way. This can be frightening and incredibly frustrating. But through the lived CF experience some of life’s greatest challenges can become the very thing from which courage and resilience emerge. Meeting these challenges provides the opportunity to live more courageously learning to meet our fears and move beyond them.

A combination of factors contributes to resilience. Studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family. Relationships that create love and trust, provide role models and offer encouragement and reassurance helping to bolster a person’s resilience. On a number of occasions’ I have met with the Clinical Psychologist at my treating centre. This experience has been really rewarding allowing me to explore my own feeling about my health and develop better skills in dealing with the sometimes-unexpected nature of CF.

Fostering relationships among a community of others dealing with similar challenges can also make us more resilient. But! I hear you say the dreaded cross-infection issue! It is a problem that won’t go away. As an adult with CF I manage this in a number of ways, using a range of communication tools. i.e. Phone, email, Facebook groups and when I am face to face I follow the CF guidelines for cross-infection, you can speak to your treating team or see the CFV website for more information on this. Spending time at CFV and becoming involved in community events has also allowed me to connect with some really inspiring people within the CF community.

CF can be incredibly frustrating, taking away time from friends and family, forcing us to slow down and commit to a busy medical schedule. It can be a drain on finances, relationships and careers not to mention the emotional costs. During difficult times, I try to remember that CF has NO control over my mind, my heart or my soul. The person I am, how I think and who I want to become, that is all up to me! Perhaps you don’t think of yourself as particularly resilient or courageous, maybe it’s time to take a closer look?

[1] Mental health promotion through resilience and resiliency education. Richardson GE, Waite P

The Spoon Theory

Back in October I had a wonderful day at the races with family and friends. It was an exciting day for me as I have been particularly unwell these last 6 months and have had to cancel on friends and family a number of times at the very last minute due to my health.

I spent most of the day catching up on the news with everyone. I sat and spoke with my stepsister Stephanie for a long about my health as she really wanted to understand how if affects me on a daily basis and the sort of issues I am facing.

For me its very difficult to put into words my personal experience of CF, on the one hand I don’t want people to feel sorry for me, I love my life its filled with wonderful friends and family and many great experiences, but on the other I do want them to understand the illness and the challenges people with CF face. I guess this has been the impetus for this blog, a platform for everything CF and a few personal bits as well!

I came across this video while reading another CF blog. It really resonated with me, as my experience of CF is that it creeps into your life ever so slowly, invading every aspect of your existence. You have to work hard to keep it at bay physically and mentally; it’s relentless in its attempt to pull you down. CF is my hidden enemy I’m always trying to outsmart, sometimes I get it right and sometime I don’t. I have won many battles over the years, but I know I can never win the war!

The Elephant in the Room

Screen Shot 2015-12-04 at 10.13.08 pm

I have been following a young girl with CF on Facebook for quite some time, watching her as she waited for the all important-life changing call for “new lungs”. Her comments were always short, a simple message of hope, courage and optimism, often quoting a well known passage from another time.

As I follow her  my thoughts wander to the time I will also be making this journey. It is a strange place to be, seeing many with CF battle against tremendous odds to stay afloat a breath away from the inevitable.

It has also been an opportunity to think about what I might want as the decline in my health occurs. Seeing so many people in the Alfred hospital going through end-stage disease including CF, cancer, COPD etc. What has become clear is my desire to create an openness around my journey that allows for positive experiences for my family and friends.

People coping with illness can become very isolated not because of the logistics of the hospital, more often because of a lack of communication with their health care team or their family and friends. For this reason a blog seems like a great tool.  I hope to be able to create a number of avenues to make communicating my journey seamless and inclusive.

Their are many topics we all think about but are afraid to bring up “the elephant in the room” so to speak, e.g. death, dying, transplant, cancer, our wishes. It is my hope that topics like these will become part of a natural conversation we might have, it does not have to to be such a dark and scary place! I would like to think that there are positives and humor in everything, we just need to know where to look.

CF can be relentless and all consuming particularly if you are acutely unwell, this is why it is so important to maintain good mental health. Fortunately the CF team includes a mental health practitioner. I meet with Anthony a gorgeous psychologist regularly for support and to explore my beliefs, fears, thoughts and observations.These conversations are a mix of laughter, tears and discussions about what my future might look like with CF.

Spending so much time in hospital in an acute ward, can be challenging. You are exposed to many difficult situations, some patients can be really unwell with complex medical conditions.  Over the course of my life most of the people I had meet with CF have now passed away, I think about this often, knowing how incredibly luck I am. Having someone you can talk to that understands issues you face having an incurable, life threaten condition can really help, this ensures I am at my best to deal with the challenges I may face in the future.

On a positive note I am not there yet and intend to fight all the way. Physiotherapy, exercise, antibiotic management, diet and nutrition are the main treatments for CF. I am in talks with my team regarding gene therapy and I hope to be accessing  Orkambi a new medication for people who have two copies of the F508del mutation (F508del/F508del) in their CFTR gene. Stay tuned and “watch this space for more updates on this!

Photo- Gregory Colbert – ashes and snow