Tag Archives: ME

Letters from Cardiff in lockdown: Jill Berrett

Today’s instalment for the Letters from Cardiff in lockdown series comes from Jill Berrett. We’re looking for your stories, so please contribute to Letters from Cardiff in lockdown

Lockdown for me, far from limiting my life, has opened up a certain freedom and new opportunities which have given me back something of what I had lost.

One of the strangest aspects of lockdown for me has been so many people in the UK and around the world, joining in my lifestyle – one of having to stay at home. Although nothing like COVID-19, I know how a virus can devastate and change a life beyond recognition.

Over 30 years ago I got up one morning to get ready for work and collapsed. I could not move part of my body, and was hospitalised in the Heath where they thought initially that I had had a stroke.

Eventually after blood tests a viral attack was diagnosed from which after years of struggle I have only partially recovered with my mobility becoming increasingly poor over the years. Initially I kept trying to work and be active but I kept getting more ill, having been diagnosed with M.E. There was no treatment and it was some time before I realised how much I had to give up in order to rest and try to build some energy as I was running on empty.

Following a fall five years ago, I was diagnosed with osteoporosis and despite having no further falls I now have five fractures in my spine which led to my becoming, a year ago, a wheelchair user and mostly housebound.

Lockdown for me, far from limiting my life, has opened up a certain freedom and new opportunities which have given me back something of what I have lost.

Fewer cars on the roads has made a huge difference. I am not in the shielded group, and I can get out in the wheelchair using the roads, now shared with mobility scooters and cyclists – a joy. The pavements in my area are unusable for wheelchairs, being uneven and broken, usually leaving me marooned in the house. I can still drive a little but I have to be surrounded by cushions, it’s painful, and worsens my back.

Now my partner can push me down the road from home to use the paths along Roath Brook with me shouting ‘pothole ahead’! We can be amongst beautiful mature trees, clear water, ducks, squirrels and an ever increasing range of birds in just a few minutes.  As we pass dog walkers, people with buggies etc, all social distancing, there are lots of smiles and ‘hellos’.

Visiting the park

I am a member of Roath Writers and an Ekphrastic writing group and used to love going to meetings but as I became weaker and my back became fragile and painful making it difficult to sit in ordinary hard backed chairs I could no longer go to them.

Now I can attend a poetry book launch with others on Zoom, enjoy daily readings of Wordsworth poems by a variety of people recognising the remarkable voice of Leslie Caron at 88 years, as the 250th anniversary of his birth moves online.

I will also be able to attend The Hay Literature Festival as it moves online. I used to visit regularly until my mobility became too poor and access was too difficult. Now I will be able to share this with others again.

For the first two weeks of lockdown my greatest worry was getting food, as I was used to ordering nearly everything online for delivery into the house being unable to do my own shopping. Suddenly I couldn’t get supermarket delivery slots and the Welsh organic company that used to deliver regularly could not continue to provide this service.

But gradually with a lot of hanging on the phone I got online slots restored and my local Beanfreaks have been brilliant at a busy time for staff, taking orders by phone and my partner can pick them up. And since then a lot of other companies who didn’t usually deliver have started to do so and I have a larger choice than in the past.

I have long appreciated my garden as I can get outside easily but never have I been so grateful for it as during lockdown. Freed up from FOMO, feeling that everyone else is having a busy active time that I can’t participate in and that I ‘should’ be doing more useful things. I feel that pressure less, my health has improved and I’m enjoying my third lockdown novel.

My deep hope is that as the lockdown is eased and people can return to their former lifestyles, opportunities to participate online will continue for disabled people and others.

I am a member of a global organisation called Millions Missing and this week is M.E. Awareness Week. Now more than ever we need more investment in biomedical research and treatment for this long neglected illness, and education for health workers as after this pandemic there is a real likelihood of more people struggling to recover from COVID-19 and having M.E.

Jill Berrett has lived in Cardiff for 40 years, having come from London to work in Cardiff Law Centre. She is now a writer and campaigner.

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