Imagine the isolation you’ve been living with became your new normal. You’re unable to meet a friend for coffee, go to your favourite restaurant or travel on holiday. Your job becomes uncertain, and you live your life on permanent lockdown …
This is what life is like for many of the 21,000 adults, children and young people in Scotland living with the serious neurological condition, Myalgic Encephalomyelitis.
Niamh, 21, from Gullane, says the illness has robbed her of being a normal teenager: “I was academic and very sporty. At the time of my diagnosis I had competed in national and local squads. I got ill at 12, so the biggest change was missing out on teenage and school years. I still miss sports an awful lot.”
M.E. affects people’s bodies and brains ability to recover normally after any activity, physical and mental, and however small. On top of the significant daily challenges this presents fluctuating condition presents, much of the support and services people with M.E. in Scotland have come to rely on – such as supermarket deliveries or carers providing personal care – have disappeared overnight.
“We have been contacted by people with M.E. in truly desperate situations,” explains Sonya Chowdhury, Chief Executive, Action for M.E.
“So we set up our new Crisis, Support and Advocacy Service to meet this urgent need, sourcing practical local assistance such as help with shopping and picking-up medications, connecting people with peer-support, and advising on the ongoing changes to welfare benefits.
“So far, we have seen a three-fold increase in requests for urgent support – all at a time when our income is expected to drop by at least 50%. Like many other organisations and charities, we made the difficult decision to furlough several staff. We are continuing to make critical decisions to ensure we are here for people with M.E., now and in the future.”
For M.E. Awareness Month throughout May, the charity is encouraging people with M.E. to share their insight and experience when it comes to living with uncertainty and isolation, with the aim of shining a spotlight on this hidden condition.
Niamh added: “Chronic illness feels like lockdown – but being able to see your friends run around, go to parties, graduate from high school and grow up.
“For lots of people suffering with chronic illnesses, this lockdown may not end when the pubs start opening back up. For them, lockdown does not have a start date and an end date.”
Rhona Barton from Blackburn, Aberdeenshire is someone else who understands living in lockdown as normal life. Diagnosed with M.E. at 21 years old, she had to find a way to get through each day.
“What helped me when I was unwell included things such as hydrotherapy, very gentle massage, few people in a room with me at one time, no loud sounds/music/voices, hot water bottles to help with joint and muscle pain; a double duvet cover on a single bed to stop it falling off in the night and to keep me extra warm; a wheelchair for trips out to save energy; small meals but often; keeping a sense of humour and learning to balance my energy levels.”
Rhona has been well for 14 years now and puts her experience to good use.
“As I am now classed as well, I have been volunteering as a mentor for Action for M.E.’s Mentor M.E. project, and as a Coach for Age UK. My health has been steady and I’ve been able to build my own business around a work/life balance that’s right for me.”
As a mentor, Rhona shares her insight into living with a chronic illness with her mentee Charlotte, who says: “Talking to someone who has experienced M.E. for themselves and can really understand my condition and concerns has been an enormous help. Regular contact with Rhona, especially at the moment, has given me something to look forward to and enjoy.”
Rhona hopes the experience of lockdown will lead to a greater understanding of people, like Niamh and Charlotte, living with chronic illness.
“For all of those individuals that have never had to restrict their lives to their own homes, I’d like them to know that what they are experiencing during Covid-19 is the normal for those with chronic illnesses.
“The isolation, the low mood, the lack of structure, the inability to see others or just to do as you please, is our normal everyday life. I hope that, when this is past, those who are hidden, will be more visible to the rest of society.”
Anyone living with or caring for someone with M.E., of any age, can contact Action for M.E.’s Crisis, Support and Advocacy Service by email at questions@actionforme.org.uk or call on 0117 927 9551.
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