For anyone suffering the daily grind of a life-threatening illness such as cystic fibrosis (CF)*, there’s no such thing as a normal working day. This is magnified when going away on business…
As an internal communications consultant, every day while at work, there’s a multitude of ‘moments’ unseen by those around me that I just have to get through and endure, usually in silence. I’ve made the decision to mainly tell people about my health on a need-to-know basis and keep it under wraps at work. As much as possible I’m keen to stand out for my professional abilities and performance rather than for my CF.
Here’s a journal of a recent business trip I took.
06:00 Alarm goes off. Rush into shower. Quiet as a mouse so as not to wake Katie or Felix. Do my physiotherapy on downstairs bed. Muffle my coughing into a towel to keep the noise down. Take my inhaler.
Find my pre-prepared pot of morning tablets – about 15 in total – an assortment of colours, sizes from antibiotics to vitamins to steroids.
Wake Katie to ask for whereabouts of the Euro adaptor (needed for my nebuliser).
Say goodbye to Katie. Felix still asleep…
06:40 After bus down the road, I’m on the Northern and Jubilee Line tubes on my way to London City airport for a flight to Holland. Only a few other bleary eyed ghosts on the tube with me, so I take my blood sugar levels by pricking my finger, putting the blood onto a strip and inserting into a pocket machine. Scores are normal.
07:50 Go through customs and security at airport. Always a tense time as my suitcase is half-full of my medical paraphernalia (nebuliser, cooling bag with ice block and drug vials, bumper bag of drugs, insulin pens). My doctor’s note about my CF and the reason for all the medication is waiting patiently in my suit pocket in case I’m pulled to the side like some renegade drugs dealer for a full-body inspection. The security team never mention it…
08:00 While waiting to board the plane, I can finally have my breakfast. Mug of green tea and a pain au raisin. After a decade of drinking green tea, I need it first thing in the morning to get me going; like a lot of people need coffee.
08:40 Flight to Amsterdam. My suitcase gets stowed above me but unfortunately the insulin pen slips out from the top pocket onto the aisle. No one really spots that it’s not an over-sized orange biro.
11:00 Local time in Holland. After traversing through the airport, I take the train to The Hague. I eat my in-flight meal given to me on the plane. Time for my insulin injection. Very serene moment jabbing my midriff with an insulin pen while watching the lovely flat Dutch countryside roll past.
13:00 Arrive at office after taking a tram from the train station. That journey really was a case of ‘planes, trains and automobiles’. Invited to lunch by some newly introduced colleagues. No time to check my blood sugar levels so have to make a guess on how I’m feeling based on my tiredness and stress levels.
Afternoon back to back meetings with new colleagues. Swapped texts with Katie. She told me that she had picked Felix up from school and was playing football in our back garden. He looked up into the sky pointed at a big plane and said: “That might be Daddy’s plane!”
I melt and feel a pang of love that only your child can give you.
In between meetings, back in the shared working office, out of tiredness, I start a coughing fit. The guy next to me enquires if I’m OK (probably thinks I’m a disgusting smoker who deserves all I get).
“Yes, I’m fine thanks!” I retort in full Clark Kent mode.
I look up into the air, close my eyes and utter another silent cry for help. For 20 seconds it all feels too much for me to carry this remorseless burden. Little do they know and where would I begin trying to tell total strangers that this earthy cough of mine is 41 years old and is never going away…
19:00 Had to work late to meet an important stakeholder. Finished for the day, I go to my hotel room but have only 30 minutes before I meet some of my consultancy friends out in the city centre.
It’s the turbo-charged CF mad dash to get ready – check my blood sugar levels (which are low as I’m hungry and worn out, so I stave off a hypo with some dextrose tablets). I then do my nebuliser using a mouthpiece to inhale a drug vapour and wash out the nebuliser kit. Next up a lightening quick shower, my physiotherapy, cough up and inhaler before I can get changed and get out the door to hail a taxi to the restaurant.
21:00 During the meal, one of my colleagues highlights the fact that she has to take one of her four tablets for the day and elaborately brings her bag onto the table to get said medicine. I don’t have the heart to mention that I would need to add a nought to my daily pill intake!
Mid meal I slink off to the gents to do my insulin injection. Being a man with type 1 diabetes can be pretty grim at times injecting in some of the unhygienic male public conveniences.
23:00 Time for bed. Long-lasting insulin injection followed by my final antibiotics. Why are the night-time tablets always the size of horse pills and tough to swallow?
Sleeping pill to make sure I get a reasonable sleep in a strange bed with European pillows that are no different to large cushions. Good job I brought my own flat pillow. In order to prevent a coughing attack at night, I tend to prop my head up with a couple of pillows. (I often joke with Katie that I sleep upright, apparently like the Elephant Man, Joseph Merrick; though that’s where our similarities end!).
07:00 Awake. Pretty good night’s sleep – thanks to the sleeping pill! So begins my morning ritual of blood sugar level test, nebuliser, shave, shower, change, physiotherapy, inhaler and my colourful cocktail of tablets.
08:00 Breakfast in the restaurant. Position myself against a wall so I can inject my insulin surreptitiously.
AM meetings with senior managers which were very useful to the context of my job.
11:00 While sitting next to one colleague I couldn’t stifle a large hacking cough. “I hope you are not contagious? I’m asked. I brush it off as befits the spin I choose to put on these comments. “No, you couldn’t catch this from me!” I reply.
13:00 Lunchtime. Stroll outside as the sun is out and Spring finally looks like it’s arrived. It’s lovely to have the sun on my face while eating my soup and bread (not much else tempts me from the Dutch menu!).
Back in the office, I try and rush my insulin injection so as not to be seen by a colleague and because I put the needle in the wrong angle, I bleed onto my shirt which I then cover up.
17:30 Miss my train back to Amsterdam airport because the ticket office back in The Hague wouldn’t allow me to buy a train ticket using my credit card. I am then given the bad news at the BA desk that I’m too late to check-in for my flight. What follows is a frantic phone exchange with a travel agent which finally enables me to transfer to the next flight to London City airport two hours later.
The stress of this debacle causes me to feel drained and I’m sure a hypo is coming on. Like Forrest Gump sitting on his bench, I slump down and eat some chocolate and a flapjack bar to re-balance my sugar levels.
20:30 After a snack on the flight home, I need to do my insulin but I’m in the window seat. Rather than create a fuss, I place my laptop bag in between me and the lady sat next to me so that I can inject in relative privacy.
21:15 Back on English time. I finally arrive back in Morden after the usual train and tubes from the airport. Rush out of the station to see my bus drive off which after six hours of travelling feels like the final insult!
21:30 Get home at last but I’m unable to relax. Do my physiotherapy upstairs while watching my two cats get ever more relaxed on our bed. Look in on my darling boy Felix who’s fast asleep and so very peaceful (there’s a hypnotic magic when watching your child sleep).
Bit of pizza that Katie had pre-cooked, shower, end-of-day pills, insulin and then time for bed…
The trip was long and tiring but successful as I was able to forge some important relationships that will help me in my job.
Although this parallel work universe can be harrowing at times, I will endeavour to carry on in this mode until that silent cry for help needs to be raised an octave into a scream for understanding and support. Until then, it’s business as usual…
This blog post is dedicated to an ex-work colleague of mine, Irene Van Luijken, who encouraged me to share how I manage my CF within the confines of work.
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up if you have not already done so.
Yours cup half full.
* Cystic Fibrosis is one of theUK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website