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Stories from December, 2013

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The Back-Room Team

This was tweeted on the 16th September by Breathing Matters (@BreathingMatter): ”Imagine not being able to breathe and imagine having no cure! Help us find a cure for #IPF #Pulmonaryfibrosis http://t.co/B1AqJTAVkm

140 characters focusses the mind and that pretty much sums up the fear and frustration experienced by people living with IPF, as well as their loved ones. As a medical writer, I’m no stranger to tight word/character limits and it’s amazing how much science you can communicate when you put your mind to it, but I found the level of accuracy contained within that tweet impressive.  Even more so because those 140 ‘tweeted’ characters made me cry. Powerful stuff, social media.

There is a tiredness associated with the day-to-day living with the symptoms of any illness, because everything becomes contingent on ‘Illness’ being held at bay to a suitable degree to let you carry on with living. The frustrating thing being that nothing is mindless any more: You have to travel after or with the appropriate medication and adapt your schedule to accommodate any necessary timescales and dietary requirements as well.

The stark reality, death is something no one wants to face, so when it’s thrust upon you as an almost-certainty then a Countdown-style clock begins ticking for you and those who love you. Everything becomes a rush and urgent and possibly-the-last and it would be great to make sure that everything gets done at speed so nothing gets missed off. It’s really important to do things quickly and (this is important) in the same way as before so no one is worried that things might be getting worse.

If only you weren’t so tired, then you could get all these things done. If only it was a tiredness that could be fixed by a lie down rather than by a rather frustrating inability to fill up your lungs with air. If only you could get your breath enough to walk, do what you used to do, so neither you or your loved ones have all the memories of how ‘it used to be’ thrown at your hearts.

That all came to mind when I read that tweet. That’s why I cried.

Everyone gets used to routines in time, even a schedule of doctor appointments, hospital visits, and lung function tests – humans like habits, and routine is comforting. As a relative, the lack of knowledge is incredibly frustrating and, as each specialist runs out of options, it can feel like another door closing. This may be aggravated by my scientific background, so a more helpful way of looking at it may be that, as you acquire a new specialist, or leave one behind, you are making proactive and empowering decisions to grab a new opportunity to own your illness and its treatment.  I’ve experienced the effect that this feeling of control can have on both the patient and their closest family. Strong words and feelings for an ongoing battle: It’s why you ‘fight’ cancer and ‘beat’ a virus.

If knowledge is power, then mindset is the mould to shape it, with and family and friends are the ‘back-room team’ to help put it in place. Andy Murray is a team of one out on court, but the pictures of him in the changing room post-Wimbledon included several others who all  felt every twinge and psychological dip with him during that match. Taking back control from IPF is an incredibly brave and difficult thing and may also feel incredibly lonely. As one of those in the back-room team, I know that we’d give anything to help (along with any additional specialists brought into your entourage to replace those you decide you no longer need). You’ll never be a burden; you’d actually be doing us a favour too!

Join Our Choir: Have Fun and Exercise Your Lungs!

It is a known fact that choristers report higher levels of well-being than solo singers.  This suggests musical experiences are enhanced by feeling part of a cohesive social group.

It is also a known fact that singing is full of health benefits. 

  • Singing increases breath control.
  • Singing strengthens diaphragm and other respiratory muscles.
  • Singing reduces stress (due to singing on an outbreath).

It is also a known fact that singing is a lot of fun!

At Breathing Matters, we have decided to set up a choir for patients, relatives, friend and staff in the London area.
 
If you are interested in getting involved or have any queries, please email either Beatriz Santos at beatriz.santos@btinternet.com (mobile: 07545 328644), or Donna Basire at breathingmatters@ucl.ac.uk
 
 
 

It’s never too early to start thinking about New Year’s Resolutions: Just Quit

It is coming up to the New Year, so it’s time for start thinking of some self-improvement. Have you made New Year’s resolutions before, but failed to keep them? I would argue that a resolution is too restraining and negative, I would prefer to focus on adopting habits that keep you healthy. Let’s concentrate on the smokers amongst you. You know who you are?  Have you tried quitting before or have you persuaded yourself that your genes will protect you from the ravages of cigarettes?

First, think of why you should stop smoking and then, when you have decided to (and this might be the difficult step), take the first teeny weeny step. You do not have to throw all your cigarettes away for good – although that might be one approach. Take a small step, develop a new habit and, once it is taken, you are on the road to being an ‘ex-smoker’.  Keep taking little steps that help you develop little habits and you will achieve your aim.

Take Small Steps

What small steps can you take?  Try these:
1.  Develop a disgust for cigarettes. Spend 5 minutes each day imaging the toxic smoke filling your lungs and turning them black, and large globs of fat being deposited in the blood vessels of your brain, heart and legs. The surgeon teeing you up for an amputation operation, etc. Remind yourself of this every time you smoke.

2.  Toss a coin each day. Heads you smoke that day, tails you don’t.   Or, if that is too difficult, ‘tails’ you don’t smoke until midday or something similar. Keep this going for a year and you may reduce your intake by 50% (provided you don’t smoke twice as many on the smoking days).  On smoke-free days, have a shower, wash your hair, put on clean clothes and enjoy the fresh smell that you exude.

3.  Take fewer draws from each cigarette (you are going to have to be honest here).

4.  As an incentive, you could get yourself sponsored for giving up smoking and help a charity at the same time – a ‘Charity Quit’, if you will!

5.  Make the first step to getting expert help.  You can get excellent help from the following:

No matter how small your first step, it is a first step and it will be difficult – if it wasn’t, everyone would do it.  Keep in mind the pluses of being an EX-smoker.  Reward yourself for even a small achievement (not with a cigarette please).

Here are some of the reasons why you should quit (this is taken directly from http://smokefree.nhs.uk/why-quit/health-and-confidence/

Health Benefits

  • You will reduce your risk of developing illness, disability or death caused by cancer, heart or lung disease.
  • You will reduce your risk of gangrene or amputation caused by circulatory problems.
  • You will protect the health of those around you by not exposing them to second-hand smoke.
  • You will reduce the chances of your children suffering from asthma or glue ear.
  • You will improve your fertility levels and your chance of a healthy pregnancy and baby.
  • You will improve your breathing and general fitness.
  • You will enjoy the taste of food more.

Your lifestyle WILL improve (after the short term discomfort)

  • You will save money – as much as several hundred pounds a month, if you’re a heavy smoker.  Perhaps some of this ‘spare’ money could be given to charity!
  • You will no longer smell of stale tobacco.
  • The appearance of your skin and teeth will improve.
  • You will feel more confident in social situations – you won’t be worrying about the second-hand smoke you create anymore.
  • As a non-smoker, you may even find you get approached more often by potential new friends and partners when out socialising.
  • Your home will smell fresh and you will no longer be staining your walls with tar.
  • You will reduce the risk of fire in your home.

Share your own stories with Breathing Matters. We are adding a page to our website to celebrate smokers who have quit.  If you would like to join our gallery of successful quitters in 2013, email us on info@breathingmatters.co.uk with your story and a photo.

GOOD LUCK!