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Life in Lockdown

15 July, 2020

Bethan’s Story: Life in Lockdown

Like all with a serious lung condition, I received the government shielding letter at the beginning of the COVD-19 crisis, early in March. My situation was particularly challenging with two lively young children, and shielding from the rest of the family wasn’t going to be possible, but we decided we’d have to be a sheltered bubble from the start. We’re now 3 months since receiving those letters, and lockdown is tentatively being lifted in Wales, at a slower pace than in England, but still the uncertainty for schools, work places, public places and life as we knew it continues.

Sheltering, and distancing isn’t a strange concept either for the army of those suffering with illnesses, we always have to be careful of crowds, winter bugs, small children’s snotty noses, and work places with open hot desks. In some ways suddenly maybe the world can sympathise a bit more with those of us who were already cautious about these things.

I’ve been living with Sarcoidosis and oxygen treatment for some time and at the beginning of 2020 was also told that there was evidence of fibrosis on my lungs and thus, I was also diagnosed with Pulmonary Fibrosis. I am close to being listed for a lung transplant, managing but limited by energy, strength, and resilience. It was at the height of the COVID-19 crisis, that I received a ray of sunshine, a ray of hope.

The ray of sunshine was an email from the Pulmonary Fibrosis Trust alerting me to my successful request for assistance in purchasing a battery operated, electric oxygen concentrator. The latest model too, an Inogen G5. I first became aware of the machine last summer when trying to hire oxygen abroad for a family visit to the USA. In looking up options for travel, I’d ended up hiring a machine from the UK, and travelling with it on the airplane, staying for a wonderful holiday with family in the Chicago area, and being a bit of a convert on my return. The fact that you can travel with it via air travel is one of the biggest draws, it’s lightweight too, so no need to carry bulky cylinders for any time away from home. We’ve packed a car to France or gone camping with a boot full of baby gear and oxygen, and very little room for anything else. The machine is still slightly on the noisy and ‘conspicuous’ side but hopefully design improvements will address these issues in future too. I’ll never forget I was in a museum lift in the US, it was full, I was wearing the oxygen, and the whole stainless steel lift sounded like it was going to take off! Thankfully my kids were in hysterics so it broke the ice for the other awkward looking lift passengers! The batteries last about 4 hours, and aren’t too big to carry another with you around if sight seeing. As you hopefully can see, just having a smaller, more portable machine, can give people like me, a little more of the freedoms that we’ve lost due to our condition.

During lockdown, we’ve had glorious spring weather, and I live near a marina, bay, and estuary for plenty of options for gorgeous walks, and safe activities with the children away from the crowds. It can be a bit hilly sometimes, but I’ve felt the benefit of these gentle walks, and at a fairly slow pace while the children play along the way. We’ve enjoyed these warm days running in the wind, discovering the wonder of trees, tripping through new park pathways, and found solace to the chaos and madness of the situation in each other and the beauty of nature. It’s all we’ve got right now isn’t it?

Each day has been filled with challenges, heartbreak, breakdowns, and juggling home schooling, working from home, missing family and support networks, and missing our lovely small town community, but there are golden moments too where the family unit and the bonding time with the children feels very special.

In thanks and appreciation to the trust for supporting me with a gift of vital freedom at such a challenging time.

Bethan Hawkins