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Member post: goals and managing expectations with Cystic Fibrosis

A little story:

When I was 12, I participated in a big folk dancing competition through my school. It consisted of several hundred participants and we danced non-stop for hours in front of a selection panel. An elite group of dancers would be chosen to go on a week-long vacation festival away from home! It would be a fun filled week of dancing and socials, my first big trip away from home – this appealed to both the princess and the rebel in me and I started focusing on the goal of being selected. At the end of a very long day I was exhausted and I had to bite back tears when my name was not announced. It did not help that my best friend had made the selection. I was disappointed…BUT the angels must have been smiling upon me because later my parents received a phone call: there had been some mix-up. My name should have been announced as I was selected.

After the initial disappointment and a rollercoaster of emotions, I was delighted and could not believe my luck. I had made the selection. Oh the fun I would have with my friend! I immersed myself in weeks of preparation: I got the extra costumes and attended the special practise sessions and as the days got closer, the excitement grew. However…just a few days before we were due to leave, I started to get sick. It was flu and it turned into a bad bronchitis almost overnight.

With Cystic Fibrosis, even a mild cold can quickly turn into a serious lung infection that requires hospitalisation. Neither my doctors nor parents were going to send a very sick 12 year-old off on a week-long trip by herself, and rightfully so. I tried to be brave but as reality set in, I was inconsolable. After EVERYTHING, I would not be able to go on the trip. I was going to miss it all. To make matters worse, my friend with her dependable good health went on to enjoy the trip without any complications. I cried with the melodrama only a 12 year-old can have and was convinced I’d never recover from this.

Theme of my life?

This story is not one of real hardship and life altering disappointment. You’ll be happy to know that 12 year-old me survived the ordeal just fine and as you’d imagine, that incident had no impact on my long term happiness. Since then, I have achieved many personal goals and done things I am proud of. While others have faced incredible hardships relating to Cystic Fibrosis, I am lucky and thankful that my setbacks have all been medically manageable. However, I feel like the theme of “being disappointed by the unpredictable nature of illness” has been a recurring thread in my life. It is something that I despise as an unnecessary hurdle that slows me down: life would be so much simpler without it! Sometimes the challenges it presents cannot be overcome or takes so much extra time. But it is also something I have learned to appreciate: it has forced me to persevere, better myself, adapt and learn to achieve things in unconventional ways.

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A few examples of everyday goals that have resulted in growth:

  • An alarming number of “goals” were reached with an IV dangling from me, including another memorable dancing trip in college, when I was mixing the last of my IVs on an overnight bus trip to the coast where we were going to participate in a competition (why so many dancing trips? I don’t know. Could I not have picked something less hazardous?). Sure it would have been easier without the health risk, but thank goodness it worked out and I had a good time. This is one of my better memories of combining IVs and life.
  • Many exams were written at our kitchen table, with the support of very understanding teachers. I managed to get great final marks despite missing a lot of school in that year and this gave me the courage to pursue further studies. I had learnt to be diligent when I can, but there were many other things that helped me excel academically (I’m talking practical things like getting creative with connecting remotely, getting extra notes, doing self-study and being upfront with the authorities who are usually helpful as long as you don’t wait too long)
  • While my first career as a teacher ended badly due to finding it impossible to continue working when I am ill, I managed to re-qualify in my thirties as a graphic designer. I had to start at the bottom again as a junior designer and worked long hours initially, but I quickly went on to find a suitable position that I adore. My hours are now much better and flexible, allowing me to still meet my deadlines with the time when I am in good health. Most people with CF that I know, have needed to adjust their careers at some point due to the various impacts on their health. The only advice I can offer is: It’s okay if your original plans have to change. Don’t give up on the fulfilment of being able to work, there are always other options. Someone once told me that finding the right job is like finding the right partner: sometimes you need to have a few jobs until you find a mutual good fit.
  • I have lowered my standard towards physical goals such as anything requiring endurance, not because it is impossible but because I am not willing to put in the extra time and hard work it would require. Adopting a more laid back approach and letting go of pressure and expectation has ironically led to more luck in this department. I apply principles such as the 80/20 Pareto principle…meaning when I train, I focus on 20% of the exercises that bring the most benefit. As I am not trying to be a pro at anything, I don’t need to give a 100%.  I have battled with a lack of energy since I can remember, so applying the 80/20 principle in other parts of my life has helped me achieve more with less.

After having repeated successes in certain fields, and repeated failures in others, I learned that the successes mostly revolve around consciously optimising my time when I am well, not expecting my health to be consistent, and trying to limit bad decisions that make me even sicker (Am I a fan of going to bed late? Yes, unfortunately).

I try to celebrate every goal I achieve, even the small ones like “Today I am winning at life by having a full time job again” along with goals that others would actually refer to as ‘goals’ such as winning a medal or buying a house. I still encounter disappointment and occasionally, I feel like crying like that 12-year-old again.

During these times, while I gain the courage to adjust my strategy and try again, I try to remember the following:

You are not alone.

Everyone suffers disappointment in their life and while it might not be health-related, they have their own real battles. You are not alone. It doesn’t make your burden easier but it is sometimes good to remember others that do not necessarily have an ‘easier’ life just because they are physically healthy. You cannot know another person’s burden, just as they cannot know yours.

 

Sometimes it is just not meant to be.

I like to believe that. When I look back at life, there are things I am glad did not work out. One cannot always see the bigger picture. But while I am stubbornly trying to force something into existence and I am just running into obstacles, sometimes the best thing to do is nothing. Take a break from the mental strain of it all, and have some faith that in the end things will work out.

 

Be honest when CF should take the blame.

Yes, sometimes illness strikes unexpectedly or lasts longer than normal and that is sad and out of our control. But to be honest, there are often factors over which we have some control. So try to be objective: Could you have done anything differently? Could the goal have been achieved while also meeting your health requirements? Was the deadline perhaps left too long? If there is nothing you could have done, you need to accept that it is not your fault. If you can make changes, make changes! The best things happen when you are honest about what you have control over and take some corrective action over your life. Don’t be bummed out: this can be a good thing!

 

Don’t allow CF to limit your dreams.

Don’t stop setting goals, but accept that you might not be able to go about things in the most obvious way and that it might take longer. If you still want to do that crazy thing, do some research and get a plan of action. If you have to work really hard at something and you succeed, it really is glorious. I won’t usually admit this but some of my biggest achievements are those that I did despite having CF.

 

Learning to be adaptable can be a bonus!

Sure it sucks while you are going through it, but things not going according to plan is part of life and the more flexible you are in responding to change, the better you can cope with the speedbumps that life throws at you. If you have learned how to overcome obstacles relating to health, this will also translate to other areas in your life.

 

It’s okay to be sad when things go wrong.

Don’t make decisions while you are in that bad space. Hang out with caring people or yourself, watch mindless tv, just take it day by day. Sometimes it just takes time until you are ready to fight again. If you are sick in addition to being sad, it will definitly take time (sometimes weeks or months for me). We all have our own unique way of dealing with life during the low times. I have found it helpful to talk it out with myself, in my head or out loud in the bath or while I’m driving in the car. There’s a certain power in saying out loud what bothered me most about the situation and what outcome I would like instead (focusing on the outcome, not the sad event). This is a weird mind trick, and yup, now you all know that I talk to myself…but often, this gives me some ideas to work with. Self talk and meetings-with-self do work, or talking to someone wise for outside perspective.

 

Keep the long term plan in mind.

A person needs to work with their strengths, and everyone needs a long term life plan that you don’t lose sight of. Where do you really want to go from here? Sometimes, when you really think about it, you realise that your true priorities are not even impacted by the outcome of the event. I’m a list maker and have such a list of ‘priorities’ that I revisit every few years, and it has helped me as my health has changed.

 

Disclaimer: I am not trying to downplay any of this. Sometimes the problem is just too big and you just need to do the best you can. Your health is more important than goals. But in general, these are the thoughts that has helped me stay sane and continue fighting.

What are your thoughts? Comment via the blog, forums or visit me over at my site stylecomfy.com  and comment there for further discussion.

 

If anyone is interested, the featured design can be ordered from my redbubble shop. I need this laptop pouch in my life…

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