My name is Declan Houlihan, thirty-seven years of age cystic fibrosis patient originally from Ireland currently living in Spain for over two years now. I am a keen traveller and in my spare time like to write travel and cystic fibrosis related blog posts.
For those eagle-eyed visitors to my website, www.continentchasers.com, you may have noticed that it has been quite some time since I have frequently written blog posts. A trip to the lovely Republic of San Marino back in February and a short break in Andorra in September were the last occasions where I tapped vigorously on my keyboard. So why the delay? Quite simply life got in the way, doesn't it always! Thankfully my health has been ok, so I can't use that as an excuse! Also, there has not been as many trips away this year so far so not many chances to write about a new city or country visited.
During this time, I rested, recovered from a sports injury, searched, and subsequently found some work to keep paying the bills. Quite normal activities for most responsible adults but the work life balance is something us dealing with cystic fibrosis can really struggle with. So how do I cope as an ageing cystic fibrosis patient? Is it all rest and relaxation or should you keep moving like the rolling stone and gather no moss? Here is my current personal journey, Work Rest Play The Cystic Fibrosis Way.
Bills and Pills
As I mentioned in my introduction it has been a couple of months since my last blog post. Not the end of the world for me and anybody who follows my articles, but if you have nothing to write about there is no point filling pages with uninteresting and useless information. Writing about travel is easy when you are moving around a lot. As a cystic fibrosis patient, I can also write about the illness and how it affects my life, hoping it may help at least one patient or their loved ones. However, the writings need to contain useful information and not just random words thrown together for effect.
These days social media doesn't paint a true picture of life in the vast majority of cases. Check out some of the many travel influencers. and they will pose beside picture-perfect beaches and stay in five-star luxury hotels from one week to the next. If you are lucky this can be a reality, but for the majority it is not so easy.
There is no such thing as a free lunch as the old saying goes! All that luxury and extensive travel does not come without some sacrifice, whether its trading your free time to work on promotion or putting away hard-earned cash to pay for it. I sacrificed a comfortable, well-paid 9 to 5 Monday to Friday job to explore the world. Not everybody can be so fortunate, so I am eternally grateful I had that opportunity. A deep fascination for the world and wish to visit as many countries as possible my motivation. As a cystic fibrosis patient, I have a different view of life and what the future may hold. Work isn't everything but neither is excessive rest, so just how can you strike a balance? The last few years as I have grown into my late thirties has given me some clues.
Back to Bed
Work
Personal trainers, animators, web designers, physiotherapists, administrators, TV hosts, photographers, and teachers. Just some of the professions many of the people in the CF community I have encountered are a part of. They say if you find a job you love you will never work a day in your life! There is an element of truth to this statement but the sad fact is that many of us are unhappy in our daily working lives. With ever-growing demand for more money, struggling economies, rising inflation and adult responsibilities it is not so easy to give up a job never mind get one in the first place!
I have corresponded with many people from the CF community who are extremely talented, confident and intelligent individuals. Our problem however lies with our bodies, our minds may be willing but the body can give up or struggle to match the mind. Many are simply not up to a full working week from day one, while some can work seven days a week for years and years, such are the variations within this complex illness. I was fortunate to find full-time work at nineteen years of age and was happy enough to work full-time (40 hours per week) until my early thirties. Then things changed when the travel bug continued to bite and a hospital stay for a bad chest infection hit hard. I was happy to be granted a career break from my job and since then have not worked the conventional 40-hour week!
During this time, I have worked on blogging and writing about my life with cystic fibrosis. The internet has been a curse and a blessing, as well as mobile phone technology. On the one hand it is a nuisance as one cannot now escape from work emails and calls at all hours of the day. In times past one could leave the day’s work in the office but now you can be reached during your free time no matter where you are. That's the negative aspect of new technology. On the other hand, you can now work less and do much of what you need to do in the comfort of your own home thanks to the internet.
Thankfully for me, I seem to have found that balance between work, rest and play which suits my lifestyle needs. I was lucky enough to find work with a local charity. Not only am I satisfied knowing that my work is helping those in the community but it's fantastic for me to work only four hours per day Monday to Friday. This enables me to spend time on other things and have enough hours in the day to get some much-needed rest if required and spend time with the important people in my life.
Sadly many of us are just a number in our working lives these days. We are easily replaced and easily disposed of when needed. If you do find something you love make the most of it. Don’t confuse having a career with having a life!
Rest
How many times have people been advised by their GP's, friends or families to simply rest? How many of us really get the time in daily life to put the feet up and entirely switch off? Modern technology is a wonderful tool which has helped us immensely, especially for us in the CF community that can share our experiences with other patients without the risk of cross-infection. As I mentioned previously, modern technology can pose challenges too. Gone are the days when one would finish a days’ work and leave everything behind in the office. Nowadays emails, texts, video calls and social media make escape almost impossible. Even when you do get a chance to relax and unwind there is always a mobile phone or laptop to bring you back to the real world.
Some people wouldn't have it any other way, enjoying the buzz of being switched on and busy at all times. For most of us in the CF community however rest is essential. There is a fine line between being lazy and resting as I have discovered. As a teenager, it was a great source of amusement for family and friends as to the length of time which I could stay in bed for.
On weekend days I could easily sleep for twelve hours and more and still wake up sleepy! For me this was quite normal and looking back I could see that my body obviously needed it, especially before my diagnosis at the late age of seventeen. As a cystic fibrosis patient, you really do learn to listen to your body. Being tired isn't necessarily due to a lack of sleep, it can be the start of an infection, minor ailment or simply a lack of essential nutrients in the body.
In my twenties I could easily complete a full day’s work, go clubbing at the weekends and drink excessively if I wished. I could play football, eat unhealthily and stay awake all night. These days as a thirty-seven-year-old things are a little different. Yes, I can still work, eat unhealthily when I want and go clubbing at the weekends but I have to be a little cleverer. For those "healthy individuals" in the community a lifetime of late nights, poor diet and all work and no play is a recipe for disaster. For us with compromised immune systems the effects are felt and seen much faster.
As a backpacker in my thirties, it would have been easier to party twenty-four seven like many others. It would have been financially cheaper to stay in large hostel dorms and to eat in low quality eateries. However, these were just not possible options for me living with this illness. Travelling on the road full-time was a real privilege but surprisingly to many it could tire you out.
As self-proclaimed Continent Chasers, moving from country to country and city to city quite swiftly was our aim, especially during our travels throughout the Americas. In the end, we achieved our aim but it's a difficult life for somebody with a serious illness to lead full-time. Despite our best efforts to stay well we can still succumb to forces beyond our control. I have been exercising, resting and trying to eat well but despite this one of my recent sputum samples showed up Pseudomonas aeruginosa. Put simply this is a common bacterium found in the lungs in many CF patients and can lead to a host of problems. The trouble is despite our best hygiene practices and infection control we can still contract such nasty bacterium. It's all about striking a balance with this illness. Sure, you can sit at home in a sterile environment and never leave the couch but you cannot let it stop you from living life, no matter what you wish to fill your days doing.
So how do I get some rest while now juggling treatments (physio, nebulisers etc), work and leisure activities among other things? Working part-time has now given me the opportunity to take naps or simply sit down in the afternoon! Finishing at 2pm gives me ample time to take 40 winks if needed and still wake up in plenty of time to enjoy dinner and engage in social activities in the evening. In addition, getting a good night's sleep is also important so that is why I have invested in a good mattress and pillows. They might not completely stop the occasional coughing attacks during the early hours of the morning but it can help in getting a good rest.
One of my most relevant tips to obtaining a proper rest is to simply switch off your mobile phone. As I have touched on, we live in an age of modern technology, for all the advantages it has brought there are negatives. What chance does a person have to completely switch off when a phone is ringing, text message notifications are buzzing and social media alerts are drilling into your brain? Put your phone on silent or switch it off. If somebody is trying to call you will receive a notification to allow you to call back. True silence is the rest of the mind, and is to the spirit what sleep is to the body, nourishment and refreshment.
Play
Last but certainly not least, it's play. All work and no play makes Jack a dull boy and this old saying definitely rings true. As I write this there are many cystic fibrosis patients around the world struggling to breathe, even the slightest physical efforts leave them drained. So, to all of us out there who are lucky enough to get out of bed and off the couch, do it now! Don't take your body for granted and do some physical exercise of some form.
For me, football is my biggest passion and I enjoy every second playing at least three times a week. I've even joined an over 35's veterans’ team in my local area so it's never too late! Furthermore, when I first received my CF diagnosis at 17, I never thought I could reach veteran status! It goes to show that there is hope if you have been born with this illness. As I get older, I notice my knees are starting to hurt from years of playing but I wouldn't have it any other way. Go swimming, get to the gym or take the stairs instead of the elevator. Nowadays we are quick to turn to medications when exercise and a healthier diet could suffice. I love nothing better than a simple walk in the evenings with my wife. Getting off the couch makes me feel better and the fresh air helps me get a good night's sleep which is always a bonus!
I don't wish to sound holier than thou, I do love lazy days on the couch watching football on TV only moving to go to the bathroom! We do all need days like these but the key is to have more active days! There are no hard and fast rules to living a healthy life. Living with cystic fibrosis is difficult and despite all our best efforts to lead a healthier lifestyle we can still spend many days feeling very ill. We all have our own journey to take but with recent developments in treatments there is more hope for those living with CF than ever before. When I was diagnosed at 17, I never thought I would be here writing about ageing with the illness and heading towards my 40th birthday! The next battle is to make sure that everyone who needs these life-changing treatments get it and without the need to fight tooth and nail for it! We have enough of a fight daily living with this illness!
That’s how I as a thirty-seven-year-old CF patient likes to work, rest play the Cystic Fibrosis way. Who knows I may be still rambling on in another thirty years but for me it’s the quality of life lived in those years not the quantity of them. Keep breathing, keep living to the full, play more and work less. As Dolly Parton once said "Never get so busy making a living that you forget to make a life."
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