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Lungevity

For COPD, Asthma or Respiratory sufferers

How to survive travelling with COPD

Almost 2.5 years on since I’ve been diagnosed and I’m still learning every day on how I can better accommodate to my condition. I don’t think there’s an end to that journey, like everyone with everything else, whether it’s your career, relationships, health- the beauty of being a human being is being able to constantly learn and adapt.

There has been days I wish I knew the answers instantly and didn’t have to deal with anymore uncertainty and then I realise, life would be pretty boring!

Having moved away from London because of my condition, you would think I’d avoid going there, but the fact is, there are many people living in urban cities and polluted environments with this condition and need to be able to cope. I was lucky enough to have the option to move away to somewhere less polluted and I did- Scotland- fresher air! If I wanted to go to the extreme, I’d have moved to Iceland (one of the least polluted cities in the world), but let’s just say, I still wanted a ‘life’! But not everyone has this option.

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Pick me ups and lessons learned

It’s been a while since I posted!

And in complete honesty, the last two weeks have been quite tough for me where I’ve been fraught with infection, illness and generally feeling down. I haven’t had the motivation to do much.

But these are the things that make us human as we go through the ebbs and flows of life. It’s what gives me the inspiration to write about these experiences and what we can do about them.

Any other COPD sufferer will know, inside-out, what it’s like when you first get infected and re-infected, whether it’s the common cold or some type of influenza. It’s safe to say, it doesn’t go down like any ‘normal’ healing process. It takes double the time as an ‘average’ person because your immune system is already compromised. And half the time, it’s battling to breath properly, never mind fighting an infection. It really is tough-going.

So what does that feel like?

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I look fine but…

I’m not. This pertains to the concept of ‘invisible illnesses’ and the huge discriminatory issues surrounding it. From personal experience, I’ve had many pass off judgement with either snide comments such as ‘can’t you just use inhalers?’ or people making me feel like I committed a crime for parking in a disabled space.

I do my hair and I do my make up every day. Of course I look fine! I have a mask on, but behind that mask, it may take me longer to get ready in the morning because on some days, my breathlessness and wheezing can be out of control. I remember being in London and even when I first moved back home to Aberdeen – the sheer effort it took just to get ready, to shower or to get on the tube to work felt like I was in a marathon with half the lung capacity as ‘normal’ people. Constantly coughing and trying to get oxygen was a task in itself. Walking on lunch breaks with colleagues also felt like a massive effort and I have a distinct memory of returning to work on lunch break and stopping at the bridge because I felt like ran out of oxygen. A kind colleague stayed with me until I could get my breath back from what was already a slow walk. Oh and fainting at work and being wheeled off to the medical room! The struggles are real and no one should be in a position to judge anything.

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Air pollution is affecting everyone, not just sufferers

You will have seen the recent coverage and London making headlines for its toxic air and breaching its annual air pollution in just five days. Even more so, it triggered further action by London’s mayor Sadiq Khan to issue their first ever ‘very high’ air pollution alert to the public. It was claimed it exceeded levels in Beijing. It is so severe in fact, air pollution is linked to 40,000 deaths in the UK. 

And everyone, from the most vulnerable to physically fit is affected. To stress its damaging and sometimes irreversible effects is critical and speaking from experience, I went from being hospitalised 11 times over 1.5 years in London to 1 time in Scotland. If you live in a polluted city, of course it is not always possible to relocate or have the opportunity that I had, but there is advice out there that you can follow to minimise the effects. I have no doubt that the Nitrogen Dioxide (NO2)and particulate matter largely contributed to my deterioration. It was after the damage had been done, that I had wished I was more educated on the topic or paid more attention. So I think it is very important to spread the word to your loved ones, especially those living in cities. Not to scare them, but to help them become aware and take measures to minimise the damage.

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Leonard Nimoy and his battle with COPD

Next month marks the 2-year death anniversary of Leonard Nimoy (Spock in Star Wars)!

Some people may know his death was ultimately caused by COPD and Nimoy himself, despite having quit smoking 30 years before, he tweeted ‘not soon enough’. To his credit, in his final months before passing, he took precious time from his last days among us to issue a warning through traditional and social media. With smoking being the major cause of COPD, Nimoy wanted us to take more care in our younger years before the eventual realisation that we’re mortal, and that we need to take care of our health.

He took this often undiagnosed disease amongst many, to light, as much as he could.

The trouble with degenerative lung disease is that it’s impossible to know at what point enough damage has been done to the lungs that they will continue to degenerate, eventually resulting in a COPD diagnosis. It’s known as a ‘silent disease’.

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The misconceptions of COPD

As an opportunity to provide not only tangible and practical advice, I decided that this blog would also be dedicated to mental health, reassurances and spreading knowledge or awareness.

Added to that is the therapeutic effect of being able to write about all of this and really illuminate the path for myself and others, find our way, express and get it all out! It also means others going through a similar thing can either do a nodding of the head and feel understood or to become better educated so we can all deal with it together. It may also teach others to understand better, remove the stigma and judgements that go with it.

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Massage therapies

Massages are no longer available solely in luxury spas and are now used in clinics, sports institutions, beauty salons, workplaces, shopping malls and in holistic therapy clinics!

They can range from the regular £10 back massage in a salon or the full works in a kitted out spa store.

We’re all aware of the general benefits of a massage, which include stress relief; reduced anxiety;managing low-back pain; sleep better; relieve tension headaches; eliminate toxins; ease symptoms of depression; promote relaxation; lower blood pressure; reduce muscle tension; enhance exercise performance and many more.

But what specifically can massages do for COPD sufferers?

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Diet and weight management for COPD

As stated in my bio, I’m in no way a replacement for doctor’s advice or the go-to person for nutritional and dietary help.

BUT, one thing I do have is the experience of how COPD affects weight and eating habits. I’m also lucky enough to acquire the wisdom from my Chinese father, qualified dietician cousin and generally have in interest in health and fitness anyway.

My cousin kindly referred me to an article in her medical journals at work which exposed the prevalence of malnutrition amongst COPD groups. Written by Jo Banner, a senior respiratory dietician, she spoke about integrating nutrition into the care pathway of COPD patients and stated:

‘ There is no reason why a nutritional review cannot form part of routine review of a patient with COPD and this should not be seen as an extra, isolated piece of care’ 

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How to deal with COPD anxiety…

Sitting in a work meeting. Crackling away. At least I can hear my own crackling inside my throat, from bubbles of Co2 and used oxygen trying to escape my damaged airways, but it can’t. I’m worried now. And embarrassed. This was a regular occurrence as I tried to abstain from coughing so not to be a pain in the ass or interrupt people, or god forbid, spread germs.

COPD makes it difficult for sufferers to get rid of C02, it makes us breathless, it makes us tired, it makes us frazzled. It makes us cough, wheeze, splutter and emit, sometimes in the most uncontrollable ways you can imagine. Then you start to worry about what others think.

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