Time Out

‘There’s always someone worse off than you.’ Taking time out to manage my debilitating illness cystic fibrosis (CF)* has allowed me to evaluate this saying…

Just like a greyhound chasing and finally catching the rabbit, my CF has caught up with me again. My lungs have deteriorated enough that I required some intravenous (IV) antibiotics. Though only a moral victory, this is the first time I’ve had to endure an IV for 16 months, which is the longest period I’ve gone without such an intensive treatment since my teens.

However, it means taking time out from the real world and my busy life in London as a business consultant, husband and father for a spell of recuperation time with my mum in Southampton. It’s proved to be a real shock to the system. Being away gets harder with every year that passes. This was reinforced by Katie relaying to me that Felix had recently said “I want daddy!”

It serves as a harsh reminder for this 42 year old that I can run but cannot hide from my unforgiving illness. One always feels hunted down by this condition.

In the last two weeks I’ve been through the mill. As well as feeling very washed out, the IV drugs have given me a few nights of delirium; one in particular was so fierce that it gave a new meaning to ‘Saturday Night Fever’.

As these IV treatments can take up to two hours three times a day and I’m still maintaining my usual CF and diabetes medications, a significant chunk of each day is medical related. It feels at times like a tag team event between each different drug.

I’ve also had to put up with a persistent pain and discomfort where the PICC IV line goes into my arm which recently had to be re-dressed at the local Southampton General Hospital.

Yes, it’s been rather a torrid time to be honest and it’s initiated in me the first really depressive thoughts for quite some time. At such times there is a natural tendency to really cover oneself in the bubble wrap of despair.

I have been able to utilise the little downtime to spend quality time with mum, see my brothers, my elder brother’s family, local friends and I did have a form of day-release to meet with Katie and Felix half way between Southampton and London. I’ve also been able to visit the rest home of Betty Lacey, the wife of Ken whom I featured in my last post ‘Always there’.

In this departure from reality I’ve had more time to view the outside word from within. See below a snapshot of CF news I’ve heard from local friends in Southampton or seen on social media, TV and in the press:

- A mystery CF diagnosis of an infant storyline on the UK TV programme ‘Call the Midwife’.
– A local Hampshire girl, Sarah, is responding well to the new lungs following her much needed transplant last November.
– A 31 year old mum in Ireland is belatedly diagnosed with CF following the diagnosis of her own child. She had been treated for chronic asthma all her life and CF had been missed.
The UK CF Trust have kick-started their 50 year anniversary activities with CEO, Ed Owen, on BBC Radio 2 talking about lung transplants but also launching their ‘No Party’ theme – highlighting that CF is no party as well as mandating that they won’t party until all CFers make it to at least 50!
– A 38 year old CF adult from London, Nick Talbot, is hoping to climb Mount Everest in June. Nick is an experienced mountaineer and is boosted by the wonder CF drug Kalydeco.
– A worried dad in Australia asking for help and advice for his recently diagnosed two month old daughter.
– A girl, claiming she was not a CF sufferer, on an online CF forum berating all CFers for making light of their illness with their ‘gallows-style’ humour.
– CF adult advisor for Scotland, Yvonne Hughes, taking part in a trial to see if singing can help lung function for CFers and separately signing up for the Great Scottish swim later this year.
– Danish scientists have discovered a natural garlic compound, ajoene, which could help fight CF infection. Tests are being carried out on rats. (Apparently, the male rats claim their lungs have never felt healthier but the females have stopped kissing them!)
– The British actress Jenny Agutter featured in a Daily Mail article that focused on her niece who has CF and the possibility that two of her siblings could have succumbed to the illness.
– My cousin from Oxford, Sarah McNaught, has sent out a donation website ahead of her wonderful commitment to run the London marathon in aid of CF.
– A wife asked for prayers as her husband was rushed to hospital in America to receive his donated lungs.
– A much loved 15 year old boy in America and a beautiful 23 year old girl from the Faroe Islands sadly passed away due to CF.

This full spectrum of news demonstrates that CF is a global condition and engulfs many people – from the sufferer, to their immediate family and associated friends. The last two sad stories are pretty commonplace on the web and provide the quickest antidote to any self-pity I might ever feel.

The news highlighted that there are very few winners with CF and helped me to re-set my mind set to the truth that even though I may be having a tough time in my microcosm of IV frustration, that there is always someone worse off than me. I can never be grateful for my suffering but I am deeply appreciative of every breath I take and any extra time I have in this world.

Taking time out is never going to be easy but it is vital to help galvanise my health so that I can return to my fulfilling life in London. However difficult it is to achieve, perhaps we can all benefit from occasionally taking time out to see the bigger picture around us?

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

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.

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About Tim Wotton

I live with my lovely wife (Katie) and spirited seven year old son (Felix) in Morden, Surrey; working full-time as a Principal communications consultant at the Fifth Business. 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 43 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 that was published on 30 April 2014 and available via e-book and paperback at Amazon and to order from UK bookstores.
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53 Responses to Time Out

  1. Sara Bowery says:

    Yet another fantastic read Tim.I’m feeling pretty down on CF at the moment(Oliver has a cough) but reading your story picks me back up, stay strong and hope the IV boost keeps up longer this time.👍

  2. Sarah Young says:

    Hi Tim, a friend of yours who lives opposite my grandad in Pinner told me about your webpage and have been following your posts. I have a 5 year old son with cystic fibrosis and early onsets of liver disease. Really sorry to hear you are having a bad time at the moment but you seem like a really tough person I hope my son is as tough as you when he gets older. Get well soon.

    • Tim Wotton says:

      Hi Sarah,
      Thanks for taking time to comment and for sharing about your young boy. John mentioned you when we met a few weeks ago. If ever you want to chew the fat about life with CF please don’t hesitate to connect with me.

      All the best
      Tim

  3. Denise Exon says:

    Hello Tim You have an amazing outlook – what a great guy. Love to you, Katie and Felix. From Dennis and Mike x

    Ps as you know, we are not too far from Southampton in Wareham, so if we can ever help with accommodation for you, Katie and Felix do let us know x

    Sent from my iPad

    >

    • Tim Wotton says:

      Dear Denise,
      Thanks for the compliments – at this tough time they are much appreciated (likewise the kind offer of accomodation in Wareham)
      Hope to see you both soon.

      LOL
      Tim x

  4. Emma Nicholson says:

    you’re a dynamo Timmy and an inspiration!  I hope your darker thoughts have now passed, and that you’re back to your jolly self!

    Sending you hugs from Mexico where actually I’ve just realised that it’s not very good for respiratory problems.  The dust kicked up by the wind for six months sees lots of asthmatics leaving for the states.  

    See you in March!  I’m back for 3 weeks!   Emma Nicholson

    T: + 44 (0) 207 993 6975  T: +1 206 407 3732 Mex cell: (00 = UK/011 = US/Canada) 52 1 624 151 2381

     

    ________________________________

    • Tim Wotton says:

      Dear Emma,
      Dynamo eh! Well thanks. I need some dynamism right now. I’m sure by the time I see you in March I’ll be back on good form!
      Looking forward to seeing you again
      Timmy x

  5. Michael Rossiter says:

    Echo all those comments left so far. You continue to inspire so many and help us all contextualise our own lives, fortune and priorities. Another articulate, compelling and thought provoking blog. Keep smiling. Spring is coming and the sun will be shining soon. God bless mate. Michael

    • Tim Wotton says:

      Hi Michael,
      Thank you for such a lovely tribute – I feel rather overwhelmed! You’ve seen some of my highs and lows and are used to my happy-go-lucky mind set.
      I’ll make sure you receive an invite to my book launch in Southampton in Spring!
      All the best
      Tim

  6. Stewart Jones says:

    Always half full buddy! Keep inspiring!

  7. lescarletpimpernel says:

    Hi Tim

    The classic, ‘hi hope you are well’ opener can be kicked to the curb!

    Read your post, sorry you have had to go through the IV mill again, but great news that it has been so long since your previous one.

    I do know that the treatment, even if it is more spread out, gets harder each time, especially with being away from the family thrown in the mix. But surely a night out in Salisbury is a close match in the ‘Suffering’ department.

    Just want you to know me and Lulu think of you a lot, and if there is any truth in strength by telepathy you should be feeling some warmth right now.

    Take care as ever.

    Arch and Lulu

    Xx

    Julian@gomassif.com 0033 (0)613 31 71 57 Airport Transfers

    • Tim Wotton says:

      Dear Arch and Lou,
      Bless you for your kind ‘telepathy’ – I’m sure it all helps!
      Even though you are out of sight yourselves, you are certainly not out of mind!

      All my love
      Tim xx

  8. Mairead says:

    Thanks Tim, you write beautifully and I love reading your posts.
    Best wishes,
    Mairead

    • Tim Wotton says:

      Dear Mairead,
      I’m touched by you taking time to comment about my writing and blog posts – that definitely spurs me on to keep writing and sharing.

      Best wishes
      Tim

  9. Best wishes Tim and hope you are back on the hockey pitch soon!

  10. Patricia Ross says:

    A great post. Best wishes for your recovery.

  11. Jeffrey Levy says:

    Dear Tim,

    I wish you well and hope the antibiotics work

    My friends who’s son died of C F have set up a trust fund with Bromton hospital

    Which we donate to.

    This is to help research treatments and to improve suffers, lives

    Tim Wott

    • Tim Wotton says:

      Hi Jeffrey,
      Good to hear from you – not sure if you managed to finish off your message or not?
      Your connection with CF is a sad one but the fund you support will help many others – good on you!

      Best wishes
      Tim

  12. Chris Wotton says:

    I saw my brother first hand over the last 2 weeks at mum’s house, being waited on amazingly by a caring, nursing mother. However, being away from your family, feeling spaced out on another planet and not being able to help them is a hard fact of life for a CF sufferer to come to terms with.
    My thanks to all his friends who contacted him, spoke to him and visited him during this difficult time. I know it makes a massive difference.

    • Tim Wotton says:

      Cheers Chris for sharing your first hand thoughts. Yes, support from family (particularly my mum) and friends is often the thing that keeps my head above water during the IV struggle!
      LOL xx

  13. Lucy Watson says:

    Hi Tim,
    Thanks for your great blog! Sorry to hear that you’re not too well at the moment.
    I am 39 years old and have CF too (DD508) and despite already passing the average life expectancy for CF people, thankfully I have managed to reverse the ‘downward spiral’ and am now at the healthiest of my life. I have a degree in Physiology which has certainly helped me to understand my body and the processes involved to keep it healthy! If you are interested, I share some of my tips and experiences on my blog http://www.CF and Healthy.com
    I hope you’re feeling better and are back at home with your family soon :)
    Best wishes,
    Lucy

  14. Victoria says:

    Dear Tim I do hope that you are how back with your family….thank you for writing so honestly and openly … I hope my little boy (6 with cf) is able to deal with all life throws at him as you do …. Hope the ivs have worked their best… Sending you all the best love Victoria xx

    • Tim Wotton says:

      Dear Victoria,
      It means a lot to hear from you and thanks for the kind sentiment. I send my best wishes to your son who should look into a brighter future medically than when I was his age. Your job is to guide him and provide his love and care… I’m sure you do a marvellous job!

      Best wishes
      Tim

  15. lesley porter says:

    Glad to hear the Iv’s are working for you Tim. Here’s to a long period of better health for you. You are in our prayers. Lesley

  16. Helen says:

    Tim, I think your the first person to articulate my feelings, almost to a ‘t’. Your blog certainly strengthens my resolve to keep smiling, even when my recent IV didn’t seem to have any affect :(. Saying thank you really doesn’t seem enough

    • Tim Wotton says:

      Dear Helen, Your reply took my breath away (not literally, we need all the breath possible). I’m delighted that you could resonate with my words and feelings to such a degree. If you’d be willing I’d be delighted to email you separately to this blog.

      Keep hanging in there!
      Best wishes
      Tim

  17. Smolik, Sam L says:

    Hello Tim. Sorry to hear about your bout with the IV’s. I’m praying for my friend Wotton (that rhymes with Cotton) to get back to full speed quickly.

    Let me know when you are back in London and we’ll get together on my next trip.

    All the best,
    Sam

    • Tim Wotton says:

      Dear Sam, Good to hear from you and thanks for your thoughts and prayers.
      Just factor me in whenever you are next in London – I’ll move mountains to spend time with you.

      Best wishes
      Tim

  18. D Robertson says:

    Hi Tim
    Please check us out and spread the word.

    https://www.facebook.com/groups/teamcysticfibrosis/

    As a CF parent and a passionate cyclist, this is how I cope. A charity cycling team full of wonderful people started over a year ago by Martin Dainty (also a CF parent). We run the 65 roses sportive up here in Yorkshire. First time last year and raised around £35000, hope to raise more this year. Many of the team members are not cyclists but they are the doer’s and makers….raising funds and awareness is the Teams aim. Please join our page and help raise awareness.
    Keep up the inspiration, my 9yr old daughter starts some IVs tomorrow…
    Thanks David Robertson

    • Tim Wotton says:

      Hi David,
      Thanks for your reply and congratulations on your fantastic fundraising work up in Yorkshire – your funds are really going to make a difference to the life of CFers now and in the future. I’ll certainly view your page and where possible give you some prominence.
      Do send my best wishes to your daughter as she starts her IV – it’s a tough time for everyone – try to look ahead to her improved health post IV rather than focus too harshly on the current treatments (easier said than done I know).

      Kind Rgds
      Tim

  19. Liz O'Connell says:

    Hi Tim, I have read your last few posts, as a mother of a nearly 18 year old daughter who lives with CF I love the fact that you always come across as cheerful and living life to the full. We have always encouraged Megan to do what ever she wanted to do and for some years she even played for Reading football club in their academy, unfortunately due to her health and the fact that she is so small for her age she had to give up. At present the nearest thing she gets to having exercise is deciding what she is going to wear and what she will be doing at the weekend!! She is now trying to decide whether to go and study Business and Economics at Uni in September or to live her dream and go travelling!!! Whilst I know we will worry so much if she does go I really hope that she attempts to at least give it a go. Anyhow hope you are recovering well from your IV’s and I look forward to reading your future blogs.

    Thank you and wishing you all you could wish for,

    Liz

    • Tim Wotton says:

      Hi Liz,
      Thanks very much for taking time to comment and I’m glad that my posts have resonated with you. Good luck with Megan’s decision on what to do next year. I found that first year away at Uni a real challenge for maintaining my health and I learnt some harsh health ownership lessons that have kept me in good stead. I might be concerned to be abroad if my health deteriorated. One option might be to go to Uni and get better at managing the health on one’s own and then use the longer summer hols for some form of travel adventure??

      Kind Rgds
      Tim

  20. Ajmal Mehvish Khalil Malik says:

    Hello Tim, I’m 33 and also have CF (DF508,DF508). I recently completed some IV’s, having a PICC line for the first time since I was 15. Thankfully I completed them with little trouble although the discomfort remained thoughout the course. I have IV’s routinely every 6-12months. So I understand how completely how ur feeling. I’m sure you’ll be back to your best soon.
    Your post is articulately put, and echoes the very way I feel sometimes, reminding myself to ‘take time out to see the bigger picture around us’ and it most definitely helps to reset the mind knowing that there are people in worse positions than me.
    You have got a new follower in me, definitely found your words to be inspiring.
    Take care, stay strong, positive and above all healthy.
    All the best, Mev Malik

    • Tim Wotton says:

      Hi Mev,
      Reading your feedback motivates me that what I’m writing is hitting the mark and making a difference. I’m touched that it resonated with you so much.
      My IV course will come to a close soon and I can then claw back my previous working, social and sporting life – something I am very focussed on!

      Best wishes
      Tim

  21. Philippa says:

    Hi Tim – another wonderful post which echoes my every thought and feeling, not only when on IVs (my PICC line caused me so much pain in November), but towards life with CF in general. Only today I was talking to my friend and saying how CF makes my life perspective differ from that of those I grew up with and allows me to keep in touch with the bigger picture – something I’m strangely grateful for. At least that’s the positive spin I like to put on it…
    Thanks for sharing – it’s so comforting to know you’re not alone in these thoughts and feelings.

    Take care and good luck with the treatment – chin up!
    Philippa

    • Tim Wotton says:

      Hi Philippa,
      Bless you for your comments that echo my feelings towards our situation and how at times CF can immerse you in such a different way to our healthy friends and as a result offers us a unique lens on the world (good and bad). As hard as it gets, having that positive spin is sometimes the difference in our survival.
      Take good care
      Tim

  22. Paul Birch says:

    Hi Tim. I was very moved by your blog. To take that broader perspective when you are clearly dealing with a lot of pain, disruption and uncertainty yourself is truly amazing. I guess its testament to your strength and character that over the years when I saw you in the pub and in the hockey pitch (the only 2 places our weekends were spent!) I never even knew you were battling CF. So I just wanted to pass on my best wishes, positive vibes and huge admiration. Keep fighting the good fight and stay strong. Please pass on my love to Katie too. All the best, Birchy

    • Tim Wotton says:

      Hi Paul,
      Good to hear from you and thanks for the truly kind words – they meant a great deal to me (and Katie)! As you have worked out, I was always pretty keen to keep my health secret from the hockey and social world that we inhabited for so many years. That way, people get to know me first and my CF second which has been my desire. Just imagine how good I could have been at hockey with a working set of lungs!! :-)
      Thanks once again for taking time to get in touch and I hope our paths cross soon…

      Best wishes
      Tim (and Katie)

  23. Hello Tim,
    I am a Mom of three CFers and its great that you are keeping a bright outlook.
    They are 20,16 and,in Aug of 2012 my ten yr old lost his battle with CF.I live in the states and it seems that your treatment differs from ours.When my 20yr old was just 5 or so she received a port for all IV meds.It was torture for her to lie on that table while they snaked that picc up her vein.To this day she doesn’t like anyone touching the inside of her arm.
    Each of the children had them put in around the same age.Its a small port just below their collar bones.When in the hosp it can be accessed for blood draws.The procedure was easy as they could tolerate intubation and the removal because they were young.The port took half of their pokes away and were changed onc a week.

    They also try to put J tubes in asap to get the most nutrition in the kids at the earliest points.
    Do they do any of that in the UK? I wonder what other differences there are compared between us? Has anyone ever put the regimens of our CF docs next to any other countrys’ to find out? That would be interesting.

    Wishing you well
    Kathy Pearson

    • Tim Wotton says:

      Dear Kathy,
      I was touched to hear from you and stunned to hear of your story (especially having such a seismic connection to CF through your children. My heart goes out to you all on your sad loss in Aug 2012 – how tough that have been for you and the siblings who still combat the condition.
      Ports tend to only be put in if the veins cannot handle a long line / PICC line insertion in this country, which is why I’m 42 and have never had a port. I’ve also never had a j tube fitted.
      That would lead me to believe that the CF drugs available might not differ across the world but the maintenance and care would differ across the countries and you might even find that in the US it could vary immensely between the different States.

      Thanks for taking time to comment and I appreciate your kind sentiment – apparently it takes less muscles to smile than frown, but sometimes with CF the smile is worn heavily behind a frown!
      Do give my best to your children and do keep in contact.

      Best wishes
      Tim

  24. sue kruk says:

    Hi Tim, It’s rotten weather, and you’ve certainly been going through a bad patch, and I am truly sorry for that, and hope you’re now on the mend. In my chaotic filing system, I keep coming across a cutting from CF News, where a 13 year old hockey ace— (you)—encourages others. It makes me smile. So keep going with your good work. Keep battling on. ( That’s not exactly what Churchill said) And remember spring is round the corner., and you’ll be back at work and with the family. I’ve just got round to reading CFT’s time line- it’s so encouraging. X, who has had his ups & downs, is 44 now.

    • Tim Wotton says:

      Dear Sue, Thanks for your message – meant a lot to me! Yes, I’m looking forward to getting back on with my life post IV’s. Glad that the piccie of me as a 13 year old makes you smile – I have a recollection that my haircut back then was rather naff!
      Give my best to X and I’ll let you know when I hold my book launch in Southampton!

      Best wishes
      Tim

  25. Siu says:

    I do not know if it’s just me or if perhaps everybody else experiencing
    issues with your website. It appears as though some of the text on your posts are running off the screen. Can somebody else please provide feedback and
    let me know if this is happening to them as well?
    This may be a issue with my web browser because I’ve had this happen previously.
    Appreciate it

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