Business as usual

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.

Tim

Tim Wotton

* 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

http://www.cftrust.org.uk/

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About Tim Wotton

I live with my lovely wife (Katie) and spirited nine-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
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23 Responses to Business as usual

  1. Casey B says:

    Wow, Tim.

    I’ve been reading along for a while, ever since I saw your article on the BBC’s Ouch! site, but this is the first time I’ve commented. What you go through every day is remarkable, and inspiring…if you can still be smiling at the end of a day like that, then the rest of the world should take notes. Thank you for giving your readers an insight into your world and showing us that whilst you may have CF, CF doesn’t have you. You are an inspiration.

    Very best wishes to you,

    Casey

  2. Lesley P says:

    God bless you Tim.

    xxx

  3. Irene says:

    Dear Tim, first of all , I am really glad to see another blog from you… it has been a little bit quiet and I was worried. So big was the surprise you wrote about your work and even about a trip to the Netherlands (although I am deeply disappointed you couldn’t spare me a minute 🙂 … hopefully you’re more often in The Hague), even bigger was the surprise you dedicated this to me. You made me blush quite a few times but now you made me cry……for a good cause of course ( I had not expect this but I am glad you did ! ) Everytime it is so good to read from you and I think the way you live your life is an example for all of us: Make the best out of it, and try to enjoy each day. Thanks. Hope to see you soon to give you a big hug! Irene

  4. Kate Langley says:

    Nice window on your world Timmy! so that’s why you were always so keen for tea and cake at work, helps the horse pils go down 😉

  5. margaretwotton says:

    Just had to make a quick response as I’m bursting with pride at what you achieved during your business trip to Holland. Any mum would be proud, but especially one who has a Cf son or daughter. That took a lot of stamina so soon after finishing your last IV treatment. I loved the story of you using your briefcase to hide your insulin injection from the lady in the next seat. She possibly was giving you some sidelong glances!
    Keep going and take care XXXXX

  6. Andy Barriaux says:

    Dear Tim, Your resilience is a great inspiration to me, you give me strength & I know I have absolutely no reason to be in turmoil about anything that happens ,unless it should be life-threatening. Please continue with the same determination.

    Looking forward to seeing you in May in the UK &, especially, here in the South in August. Lots of love, Andy XXXXX

  7. Laraine Watson says:

    Hi, Tim – you are amazing! I read your blog with much interest. My, son, Andrew, aged 43, also has to go through a similar regime to you – he is the Property Director of a large plc, and his work is also very demanding. He also gets up at 6 a.m. every morning, and reading your blog was similar to his daily routine. I am so full of admiration for you both – I really think you both have such a positive outlook on life. Very sadly, we lost our youngest son, Nic, when he was 29 – he had just gone onto the transplant list – he was an athletics journalist, and he lived every day of his life to the full. Many people said that he had achieved more in his 29 years than most people do who live to be 70 – that is surely the best way to deal with CF – you are a person first and foremost, and most importantly. As a parent, I am so proud of my children, as I am sure your family, and your wife and son are of you. My very best wishes to you for the future. Laraine Watson

    • Tim Wotton says:

      Dear Laraine,
      Thanks for taking time to write in. So sorry to hear about Nic but pleased Andrew is soldiering one. I expect he keeps the soul and spirit of Nic alight… Yes, the majority of people I know with CF live today like there might not be a tomorrow. A short and merry life is the spin I choose to use for it. Not a day wasted!

      God Bless
      Tim

  8. Beate says:

    Dear Tim, god to read your blog. I’m a 51 one year old danish woman with CF and your day is pretty much how mine was 15 years ago when I had to stop my full time job as an air hostess with Skandinavian airlines. On top of that I was admitted to hospital every 3 month for 2 weeks and still going to work in between. That wore me out eventually. My best advise is to take care of yourself and be carefull not to neglect your health because you have to do your job. You life is far more important than your job. Rather cut in hours of work than be worn out too soon. As I did. Too proud to turn in sick. Not worth it.
    best regards and good health
    B from Denmark

    • Tim Wotton says:

      Dear Beate,
      Very wise counsel from one who’s gone through this and knows the benefits of understanding when that silent cry has to be heard. Your words resonate very loudly with me and every day I feel closer to a change of pace for the sake of better health…

      Take good care and thanks for sharing.
      Tim

  9. Tim, As a mum of a CFer who is in his teens, it was great being able to read your blog and have an insight of what life may be like for him in the future. I worry so much about him all the time, as you can imagine (being a dad). Thank you.

    • Tim Wotton says:

      Dear Marion,
      A lot of lives with CF used to be all about just plain old existing. Even though there are many variations of this cruel illness, these days, with the right support, dedication and mindset, a CF live is one that can make a difference and be full of hard-fought delights.
      Give my best to your teenager…
      All the best
      Tim

  10. Jasmin Hyde says:

    Hi Tim, this is the first time I have read your blog & found it to be very inspirtional. i have an 11 year old daughter with CF & it is definitely a daily struggle. I hope that one day my daughter will be as regimented as you are with the balance of work, home & your CF. She has recently been declining, has been restricted to home school & the doctors have been throwing around the thought that she may need a transplant very soon. On the regular, I have to be on her about doing her treatments & taking her pills. Were you the same when you were her age? And do you have any advice on how I may be able to handle this?

  11. Philippa says:

    Hi Tim
    Great blog, again. Thank you for sharing this. This is a relatively new battle for me, being at the start of a new career in deadline-driven publishing. Constantly trying to find the appropriate balance is so difficult, especially when, on the outside, no one has a clue of what is really going on (when do we ever, anyway?). Like you said, sometimes that silent cry makes all the difference. It’s good, therefore, to hear people’s approaches.
    I did chuckle, however, at the stereotypical reactions to your coughing. I get them all the time! I used to live in Spain so I constantly got the ‘you should stop smoking’ one. I do also love your response to the “I hope you’re not contagious” – I may throw that one out there next time! I encounter a similar problem when on my ‘month on’ of Toby neb. It makes me almost totally lose my voice. Explaining why without it requiring a life story always calls on the imagination. I try to think of a new one each time…!
    Keep up the good writing 🙂

    Philippa

    • Tim Wotton says:

      Dear Philippa,
      Thanks for your candid reply and I’m touched that my post resonated so much with you. Yes, the comments you hear at work and the retorts you would love to use are plentiful.
      Despite the difficult moments, being busy does take your mind off the daily grind of CF…

      Take care
      Tim

  12. Lucy says:

    Tim,

    I worked in CF research both in the UK and States for 10 years and it never fails to amaze me what Cf sufferers have to go through on a daily basis. In might not be much solace but there are a fantastic team of researchers out there working very hard to not only find a cure but to improve your quality of life. readingyour blog is really an inspiration to those of us who work long hours in a lab and sometimes lose sight of the importance of their work. I hope I am reading your blog for many years to come.

    • Tim Wotton says:

      Hi Lucy,
      It was refreshing to read your comments and kind sentiment. I’m glad that you and your research colleagues are so motivated to help cure us CFers – we need all the help we can get!

      I certainly hope you will ready my blog and forthcoming book for years to come!

      All the best
      Tim

      • Lucy says:

        Tim, In the States I worked with most of the main researchers/doctors who discovered CFTR. If you ever need more information for your book on the research/upcoming treatment etc side of things just let me know, I would be happy to put you in contact with them.
        Lucy

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