ME Awareness Week:
More to experience during Lockdown – Karen & Mike’s ME story

I live with my husband in mid-Wales and we both have ME, having met because of it 23 years ago (through the ME Singles Group) despite living 200 miles away from each other at that time.

Little change during lockdown

Our lives during the Coronavirus lockdown haven’t really changed day to day as we are pretty much housebound for most of the time anyway.  We do get out occasionally but only for a very short time, possibly once or twice a week and only if we are both well enough, of course.

“lockdown has brought more things within our reach”

If anything, the lockdown has brought more things within our reach as there is now so much more online – museums to ‘visit’, shows to watch, and virtual tours of places I would never be able to visit and see normally.  Our days are ‘full’ as it takes so long to accomplish anything, having to break it down into small manageable chunks with lots of rest in between.

Having Mike with me does ease any feelings of isolation and loneliness but, of course, as many ME sufferers know, feelings of missing out and poignant memories do hit us from time to time, especially as we have always found it so difficult to get others to understand ME and how it affects us.  At least Covid-19 sufferers are believed.

ME changed our lives more

The lockdown does remind me of when I first became ill and my whole life radically changed, as it has now for so many at this time of Coronavirus.  However, most people still have their health. even though the future is uncertain for them.  I think ME sufferers are well used to adapting as we have had no choice.  I have heard of some people’s experiences with Coronavirus which remind me of  ME, especially in the early days when you don’t know what is happening to your body and brain – crushing fatigue, brain fog and confusion, whole body weakness, headaches, pain, and myriad other symptoms.

One major difference between ME and Coronavirus

One glaringly obvious difference between now and when we became ill with ME is that people’s health problems with this virus are being taken seriously.  Becoming ill with ME is devastating not only for what it takes away but also for how others, especially the medical profession, treat you.  We have both been to numerous doctors for help over the years but there have been few tests or referrals offered, with symptoms sometimes attributed to psychological reasons which, I find, most insulting.

Doctors also seem to misdiagnose patients with ME when they don’t have it, so more education about what ME is and is not is definitely necessary.  We are not believed so we tend to keep quiet and suffer largely alone now.  In this pandemic people are listened to and the Coronavirus is taken seriously as the devastating illness it can be; but ME is equally devastating and the isolation associated with disbelief makes it even more so.

It will be interesting to see if there are any long-term consequences to having Coronavirus and if patience and tolerance persist over the coming months for those who find their symptoms linger.

Lockdown readjustments

On a practical note, the two supermarkets in mid Wales we usually use to deliver food to us on a regular basis have let us down as we can no longer get delivery slots with them.  However, we have found local places who deliver and so still get regular deliveries of food.  I aim to continue to use these places in the future after the lockdown to repay their great service.

In addition, we have found two other supermarkets who do deliver to us, as well as to my elderly in-laws in West Wales, even though getting slots has been quite a challenge.  I have had emails at 10pm from a friend to tell me to go on a particular shopping website “now!” as there are slots, which has been rather trying but also funny in a way!

Of course, the weather being so lovely over recent weeks has been a bonus as we like to sit on the patio by the back door and listen to the birds, and watch the flowers and trees. We don’t have a lot of contact on a daily basis with others so haven’t found it too onerous to be alone.  We have, however, ‘adopted’ two birds – a blackbird and a robin – or rather they have adopted us!  They have us well-trained in putting food out for them whenever they want!  It’s lovely when the robin sings quite near to us and I find it amazing how loud a song emits from such a little bird!

Let’s hope that, once this pandemic has eased, ME sufferers will get their voices heard by those who hold it in their hands to help us find a cure for this terrible illness.

Karen Rippon, Mid Wales