About Myalgic Encephalomyelitis (ME)

Monday, 11 May 2020

‘Leave No One Behind’ - ME Awareness Day 2020

There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease.

Thoughts on ME & Covid-19 by Corina Duyn

Woman in wheelchair seen from behind- facing a gate. “Leave No One Behind” ME Awareness Day 2020

‘Leave No One Behind’ 

For the past seven weeks - 55 days - life as we knew it has changed forever. A virus which nobody can see, but is very much lurking in every corner of the world, made us stay at home. Many people had to adjust to this sudden change in their daily routine. Ways had to be found to work from home. Schools closed. Many teachers had to learn in record time how to bring their classes online. Zoom is the new buzzword. The undervalued and often underpaid arts became the lifeline for many to deal with lockdown. Theatres, museums, concert halls and art centres opened their doors to the virtual world. 

Many people experienced what it is like to be housebound. For many, the first few weeks were certainly a mixture of fear and a sense of novelty. Suddenly there was time for all these jobs which for years had been put on the long finger. Homes were tidied, fixed up and painted. Gardens were attended to, and vegetable beds were created. Although the duration of this lockdown is not set in stone, we all know at some point it will end. 

For the many, many people with chronic illness and disability, this time has been of mixed emotions. For me personally I spend many of the last 22 years housebound due to becoming ill with Myalgic Encephalomyelitis (M.E.). The start of this long journey was a viral infection in my brain during the summer of 1998. 
I googled the timescale to compare with the current lockdown which started in Ireland with the closure of schools on the 13th March. I have clocked up just over 8000 days, which is the equivalent of 1143 weeks. Unimaginable, even for me, although I’ve lived it.

The first few years I was mostly bed and house bound. I had a few years of gradual improvement in which I partook at life outside my wall at times. I believed eventually I would recover and return to my pre-illness life. It never happened. Before my illness I was a full time Doll Artist. I made sculpted figures and puppets for shops, exhibition and corporate commissions. I taught students from Ireland and abroad in my studio. The months before the sudden unset of illness I was teaching a wonderful group of teenagers in a group-home. It is hard to imagine that these amazing young people are most likely now parents themselves of teenagers.

So, lockdown...

Why did that bring a sense of unease in my heart and mind? Possibly because after a two your long battle with the HSE I had finally managed to be awarded full PA hours (Personal Assistance) to have control over my life and to also be allowed to leave my home with my PA. Due to the bizarre thinking of the HSE Disability and Social Care services I had been held ‘hostage’ in my home by them. My Home Care does exactly what it says on the tin: Care in the Home - not outside it. (See https://meadvocatesireland.blogspot.com/2020/01/pa-hours-to-regain-level-of-independence.html) for a synopsis of this long senseless journey.

The irony is that a week after I finally secured full control over my care the general lockdown started. So my newly found freedom, my re-emergence into the world, was halted before I had the opportunity to fully experience it. 

In terms of Covid-19, I had great concerns that my PA Support might be curtailed or even canceled. What if my one of my carers get ill? What if I get ill? The worry of ending up in a care home again, was very real. The memory of suddenly being taking into care last year still tightens my heart, and brings me close to tears. 
However, with my two wonderful PA/carers we found ways to talk about the possible scenarios. We managed to all stay well. We settled into a new routine - including reconfiguring some of the living spaces in my home and studio.

The other unease is deeper, is older. 

During this lockdown time the world became accessible via video links. A lot of the requests I made especially during the past two years are now suddenly possible. Being ‘Disabled’ became a mainstream concern. Disabled by being unable to leave the home. Disabled by having to wear mask. Disabled by not being able to be among friends and family, or to attend work or college.

For a long time I requested if my neurologist appointment could be done via skype. I was too unwell to travel the long distance. The two to three hours waiting time at the hospital for a ten minute consultation were just outside of my reach. This wasn’t possible. I asked again 6 months later (February), and it was kind of agreed but it never happened. Now people have consultations over the phone...

During the two year senseless, frustrating fight with the HSE to obtain PA hours to support me to live independently at home, I requested access to online counselling support. This was not possible. It could not be done. The fact that I could not travel, that I had no accessible transport, that I had no access to a PA, that I could not sit up in a chair for an hour all fell on deaf ears. Online counselling was simply not available. End of story.

Enter Covid-19 and the HSE is spending over a million euro to roll out online support for mental health. Suddenly there is an understanding that being stuck at home is actually very challenging to one’s mental health. 
I am pretty good in my own company and take great pleasure from nature around me and having access to my creative mind. But yes, I too climb the walls at times and long to be part of a more normal world. 

I feel that many people with chronic illness or disability have been screaming at the government and the HSE that directives and supports need to be put in place for this neglected part of society. Nobody listened. 

In 2013 I took the brave step to go to college one night a week. Disability Studies at UCC. It required more travel than my body was capable of doing.
After a few weeks my body gave up, I got extremely ill. But as I had truly enjoyed the course so far, I made the request if I could partake in the course via video link. Oh no! This could not be done under any circumstances. Privacy was an issue. So, as one of two people with a disability on this course, no access changes were made possible. Now, of course all courses are possible via video link.

So, yes. My thoughts on this current lockdown are in a state of confusion.
On the one hand I hope that people might understand our lives often lived in isolation a little better. And yet I can’t see this truly happening. Being ill and housebound is still very different from being healthy and housebound. 


I do hope that the online access changes made in our global society remain in place so many people with disabilities and illness can be part of the greater world. For me, I have not been taking part in this global change as my energy is not sufficient to spend many hours online.

The 12th of May is International ME Awareness Day. Maybe more people will stand still for a few minutes and imagine how being housebound for months, years or decades feels like. As I am a co-founding member of ME Advocates Ireland, I very much advocate for our motto “Leave no one behind”. We are asking those in power to learn from this Covid-19 experience and start to listen to people who have lived in lockdown mode for a very long time. Please keep the virtual access open after life turns back to some level of normality for the majority of people. “Leave no one behind”

ME Awareness Day Ireland: How to be part of it:

Corina’s Creative Journey through ME www.corinaduyn.com

UPDATE (12-5-2020)
Hear an interview on Community Radio Castlebar talking about this article

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