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!

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A Day at the Alfred

 Dum Spiro Spero. -While I breathe I hope.

Last Thursday I had a routine visit at the Alfred Hospital, or as I like to call it “Alfred Spa Resort”, this usually happens every three months. I have been attending the Alfred Hospital or The Royal Children’s Hospital for the past 47 years. Lately due to a bad run with my health I have been going in weekly for this appointment.

Generally I would have a breathing test first (*pulmonary function test- PFT), this measures my lung capacity, and then I would meet with my CF team to discuss the plan moving forward. This includes a review of my medications (all 20 of them).  A review of my physio and exercise routine- more specifically how I can stay on track, and a look at my weight and diet. My peg and port are checked, medications collected, future tests planned and a quick hi to the gorgeous 5 East ward nurses and I’m good to go. (This can be a four-five hour appointment).

Until two years ago I have hovered around 40-50% lung function, although to others it may not seem great, it has still allowed me to live a fairly normal life doing the things I enjoy and working full time (a very important part of my life).

This last year has been really difficult with multiply chest infections; my lung function plummeted to a new low of 30% and a weight of 45kg’s(this is not good). After 6 months of I.V antibiotics (3 times a day) and peg feeds most night’s I am now on the improve “well I have gained 3kg’s”. My lung function is sitting at 32% a gain of 6%. I am now waiting to start Orkambi(gene therapy) in the hope that this will be the “next best thing” for me.

*Pulmonary Function Test (PFT) measures your lung capacity. The key data is collected and used to form a picture of your overall lung health. The FEV1 (forced expiratory volume in the first second) is measured in percentages. Most healthy “normal” people taking the test would score between 80-100%.

 

NOTE TO MY YOUNGER SELF

 

At 47 years old I have experienced many of the ups and downs of CF, this has taught me so much about others, the bigger picture and most importantly about myself. If I could go back to when I was a relatively healthy naive, 16 year old with CF this is what I would say!

Do what you love and love what you do – I have loved every minute of my life and I put this down to a few things. Firstly in the early days people with CF were not expected to reach an age where they could work, marry, travel, etc. For me working, travelling and living is a privilege, and it has given me so many wonderful experiences I could never have imagined.

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Further Education –  I studied fashion and landed my first job with an exclusive bridal designer. I have worked either in the fashion industry or teaching at a University ever since. The rag trade is both tough and competitive but this has made me more resilient, a better communicator, financially independent and given me a sense of empowerment in everything I do.

As a life long student and teacher of 10 years, education has created a passion for learning and confidence in speaking my mind, a definite advantage when dealing with hospitals and husbands. “you don’t have to be mean and grumpy to get what you want”. The trick is to:

  1. Be clear about what it is you want or need.
  2. Speak with clarity and confidence
  3. Be calm, common courtesy will get you a long way in life

Own your health – CF is a lifelong, complex disease affecting multiple organs and systems. For that reason it was important for me to understand my body and the illness if I were to be able to make informed choices regarding my health.

Ask the questions you need to (even the stupid ones), keep up to date with current best practice and make CF your business. Your CF team will appreciate your level of understanding and you will become an informed engaged consumer!

*Always make sure the information you access is from a reliable source, not “doctor google”

Commit to a workable health routine – To tell the truth I really struggle with this. CF requires an arduous routine of physio, exercise, diet, medications, clinic appointments, tune-ups, it never seems to end. But it’s a reality if you want to achieve your goals and stay as well as you can.

In my twenties and thirties I was very ambitious, my work life and social life were hectic, I worked full time and ran a small business after hours. This combined with meeting my husband Max and his three children, renovating and travelling overseas, leaving very little time for formal physio and exercise. I didn’t want to give up any of it so I had to make it work.

God bless my ever-enduring physiotherapist, the endless discussions around physio techniques, exercise routines and requirements, I always walked away with a physio/exercise plan feeling motivated, sadly this would slowly crumble as “my busy life” took over.

This is where the “choose to be active” mantra kicks in. A job that required being out of the office meant I could do physio on the go, walking distances often carrying a suitcase with a new fashion range or heavy rolls of fabric, this covered some of my exercise requirements. Selecting holiday destinations with plenty of outdoor activities planned, and the list goes on.

Make choices that will improve your health and well being, not hinder them!

Be mindful of your limitations – As much as I hate to admit it CF can pose some limitations. For me it makes no sense to select a path that would set me up for failure. So in what ever I am doing I do try to take my own limitations into account and make sure I can achieve my goals without totally compromising my health. Sometimes this means thinking outside the box!

Learn to cook or marry a good cook! – Learn to love food and cooking. CF requires a good diet high in protein and fat. If you are passionate about the food you eat and create positive experiences around food and dining, then eating to put on weight won’t seem like such a chore. Luckily we have Master Chef and a host of other cooking shows to make you your own “celebrity chef”.

Make every day as good as it can be – My husband is an amazing man, well in my eyes anyway””. Max really does make every day the best it can be, admittedly he does have a never ending source of energy to make this happen. I don’t quite have this energy all the time, but ever optimistic, I am always able to find the positive in most things.

Remember, You are the captain of your ship, and my ship is pointed towards the sun.

Work hard at everything you do – There are a million and one quote’s espousing this theory, so I am not going to go on about this one, but again in my experience hard work does pay off – ask anyone who has tasted success!

Be kind to yourself – This advice came for another “Cyster”(CF women) with a great attitude to life. CF is bloody tough at the best of times, I have had quite a few challenges and I expect there will be many more to come. These days I am trying to work with my illness rather than fight it. I do believe a bit of fire in the belly is a good thing but this needs to be tempered with a healthy dose of realism and an understanding that you will not always get it right.

Choose to be active everyday – take the stairs instead of the lift. Get a dog, set a steady pace at the shopping mall! Choose an active holiday, horse riding, skiing, swimming,  or what ever it is that you love and DO IT! (Regularly)

Surround yourself with great people – Spend time with people that support you. Friends are those that try to understand you and your struggles as you go through life. Choose to be with people that cherish you and celebrate your victories.

In-turn be a good friend, though you may have a challenging illness it is not always about you. In my experience the more energy you put into your relationships the better they become, including those with your medical team!

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Acknowledge the special people in your life – very few people achieve their goals on their own and I have been lucky to have many great people in my life who have been there to support me and help me to achieve my dreams. Whether it has been work related or managing my CF needs around my other commitments.

Without these people I would not be where I am today. Family, friends, work colleagues and of course my CF team have all been a part of this, I always try to acknowledge those who have made a difference in my life.

Finally – I consider these as aspirations to be forever mindful off and work towards, but we are after all only human and try as we might, we are unfortunately going to fail some of the time. The trick is to be able to pick your self up, dust yourself off and try try again!

Remember Love your life, as it’s the only one you have!