Day in the life of…

What would be the image that conveys your daily life? Here is mine showing my battle with the chronic illness cystic fibrosis (CF)*…

DSCN0669

They say a picture paints a thousand words and this ‘day in the life of’ really hits home.

Every day, without fail, this is the ‘day in the life of’ someone with CF and diabetes.

My daily pick n’ mix of 40 tablets comes in all shapes and sizes, including some extremely colourful pills, which break up the monotony. I employ many shrewd tactics like bundling a lot of the smaller pills together for just one swallow and taking my time for any horse size pills!

This smorgasbord of medication includes antibiotics, inhalers, nebulised treatments, insulin injections, steroids, supplements and vitamins.

By the way – this is not a complete picture because it does not include the physiotherapy sessions at least twice a day (each lasting over 15 minutes) and the horrendous intravenous (IV) therapies which account for four to six hours of a day.

There are no days off this regime, no remission; it is relentless and all-consuming. Think of it as a scary rollercoaster ride that you can never get off.

“One more bloody thing!”

This phrase is often screamed by me internally or shouted out in frustration when this regime feels never ending and gets the better of me. After all, nobody is perfect and I defy anyone to have this quantity of daily treatments and to never get annoyed.

To take this many pills throughout the day has required me to form strong habits and station the different medication around the house and in my work and social bags, so that I have consistent triggers and reminders.

It’s sad to note that even if I am 100% compliant with this regime, it only gives me the health and lung function that the majority of people would despise. I certainly never take the health I maintain for granted.

Imagine trying to fit this quantity of medication into your day? Envisage how these treatments would be compatible with your daily life, work, family and exercise?

Another integrated factor is the effect that this level of medication and unstinting regime has on the energy levels and mental health of a sufferer, especially on special days of the year like one’s birthday, Christmas and anniversaries. It’s therefore understandable that it regularly becomes all too much for us and can feel depressing…

A new hope

Now imagine adding more pills to this mix?

There is some new medication (called Orkambi and Symdeko) from the biotech company Vertex which is available in the UK. These ‘precision treatments’ focus on the underlying cause of the illness rather than just treating the symptoms. Because of that, they are more likely to improve my lung function, reduce chest exacerbations and limit the need for expensive and time-consuming IV therapies.

But alas they are not currently funded by the NHS, although talks are ongoing to break this deadlock or should I say dreadlock.

As most people with chronic conditions have a dark sense of humour, the crucial thing for the CF population is that these Vertex treatments are ‘just’ pills (and pretty coloured ones to boot) so it will be an absolute doddle to take them and easy to add to our ‘forty-a-day’ habit.

I can certainly find some space on my ‘day in the life of’ image for four more tablets!

Picture perfect

I am not publishing this post to seek pity from the non-CF community who read this blog, but just to improve the understanding and appreciation of CF, what we go through and the incessant maintenance required.

One of the biggest hurdles in this CF life is our interactions with the non-CF community. When I reveal my condition to strangers at work or socially, the majority just glaze over with what I’m telling them. Perhaps this ‘day in the life of’ image should be shown in the future?

 

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 (on the right hand side tab) if you have not already done so.

Yours cup half full.

Tim

Tim Wotton (author of Award-Winning CF Memoir ‘How have I cheated death?’)

 

Worth a watch> My illuminating interview with the marvellous Adam Cox on Modern Mindset video where I share more about my medical regime, as well insights about my survival secrets, positive thinking, how living in the moment enables my life & lessons learned at work.

 

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.

 

Advertisements

About Tim Wotton

I live with my lovely wife (Katie) and spirited ten-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
This entry was posted in Postcards from Earth and tagged , , , , , , , , , . Bookmark the permalink.

8 Responses to Day in the life of…

  1. Olivia says:

    So glad you posted something, Tim. I’d been thinking of you the last week wondering how you were doing.
    I’m seeing a lot of familiar meds on that table. The Novolog pens, the e-inhaler thing — I never remember what it’s called, Advair, and you even have the Tobi podhaler!
    Jeff’s CF nurse was kind enough to come over and pick up a number of these unopened meds and his machines to donate to those in need. His Vest went to a young man in Serbia, I think.
    I’m sure whoever received his month minus only two days of Symdeko was over the moon. Poor Jeff only took it for two days before he was admitted in the middle of the exacerbation that turned into his last fight. He had been hanging on all 2017 waiting for the spring to obtain it.
    I wish you all the best, Tim. Love to you and Katie and Felix.

    • Tim Wotton says:

      Dear Olivia, you are such a kind-hearted person that you take time to respond to my blog and share how you are doing. I can only imagine how all these reminders of Jeff’s CF life can bring a mix of emotions for you. You had a special bond with Jeff and he loved you and the twins very much and he is like an invisible cloak around you all.
      My warmest wishes as always
      Tim

  2. Denise Exon says:

    Hello Tim

    The picture is very powerful and a good way to help us understand CF and its implications.

    Love from Denise x

    Sent from my iPad

    >

  3. Richard says:

    Moving post and one I can sympathise with.I think though your taking to much on board eg trying to live a normal life with a abnormal condition which puts you under stress.
    For me Ive had years of dealing with CF and know that aiming to keep a good lung function can drain you emotionally.What experience has taught me is its good to have a day off eg once every 2 weeks of treatment.Hence were all going to die and we need to enjoy the ride

    • Tim Wotton says:

      Good to hear from you Richard and I appreciate your sentiment and suggestion. I dare not take a day off the regime as I would feel too guilty and would worry that my health would dip even with just one day off the meds. I’ll give it some thought though.

      All the best
      Tim

  4. Ann Hirst says:

    Hi Tim, even though I’ve known you for more than half my life and I’ve (thought) I understood your illness to a degree, until I saw this picture, the extent and volume of meds you need on a daily basis still comes as a shock. It’s testament to your strength and resilience as a person that the rest of us are in the dark about this. Simple things, like, when we chat on the phone, you can be so lovely and relaxed and not be like BLOODY HELL HAVE YOU ANY IDEA HOW MANY PILLS I JUST TOOK BEFORE BREAKFAST? is beyond me tbh 😳. Thanks for reminding us what’s going on behind the smiles and the laughter. Much love xxx

    • Tim Wotton says:

      My dearest Ann, your comment made me smile, laugh and feel proud that after 29 years of knowing each other that I can still surprise you! The trick is that I have had all my 47 years to get used to this regime and hence not be a BMW (Bitcher, Moaner, Whiner) about it. If this was all you knew, no doubt you’d be just like me (though better looking of course).
      All my love back at cha xxx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s