ME & Me shares a monthly life story of someone living with ME in Yorkshire. Bill’s story is the fourth instalment in the series.
Bill Clayton founded York ME Community in 2016 after years of illness. The group quickly became a hub of support and information for many people with ME in the city. The group has grown over the past five years and now has a website, Facebook and Twitter page where sufferers can access information 24/7.
I love living in York and have done so since I chose it as my last posting in the Army around 1994. At that time, I had a pretty good, healthy, routine life. I loved most sports, running marathons for charity, enjoying badminton, archery and coaching a girl’s football team for Fulford Football Club in York.
This was as well as a great social and family life and a very busy job. I was also part of one of the local Business Networking groups, so let’s just say life was busy, but good.
Out of the blue…
Then out of the blue, things were to change. In April 2006 I was hit with ME (Myalgic Encephalomyelitis) during a short family trip to the Lake District. On a warm day I came over so cold and shivery that I had to go indoors and put everyone’s jackets on me to get warm. The next day I awoke feeling like I had been hit by a train.
Feeling bruised and sore to touch, I struggled to move very painful limbs and my brain seemed steeped in a very heavy sludge, making every thought a struggle and every word hard to find. During the five years it took for a diagnosis of ME, I tried to carry on with everything I was doing previously.
As things became harder, I firstly dropped my social life, then all my sporting loves, then finally I had to give up working. This was hard to do, and I kept pushing myself to keep going, so firstly went to part time, then just working some hours from home. I found that it was so mentally and physically draining that I was in effect unable to function.
I was to later try again on a part time basis, but this only lasted a couple of months before I had to admit defeat. Maybe I should have realised things weren’t quite right when I’d worn out a pair of new shoes in just over a month as I hadn’t realised I was dragging my now very heavy legs just getting to and from work !
One thing I found strange and difficult was when applying for jobs when you have a chronic illness. Life has taught us to be proud of what we can bring to a job and a new employer by saying ‘yep, I can do this, that and the other’.
It turns completely on its head when you have ME and have to explain that you might not be able to get into work on given days, or find the noise from the photocopier is draining, or being near a window is too bright for you to manage. You’re suddenly a different person, and it takes so very long to understand and accept the new you.
My biggest wish is that I’d been diagnosed earlier and told not to push through, to rest more and pace any and all activities. This is a must do for anyone new to ME or such as Long-Covid.
I was soon to learn that there was very little support for those with ME. No cure, and limited, sometimes harmful ‘treatments’. What was even more surprising to me was that many within the medical world don’t believe that ME is a real physical illness, making it so much harder for patients to be believed by family and friends, which makes me feel so sad, frustrated and angry. This leads to family not believing, which creates very difficult situations for many.
People really need to understand what ME is all about.
The crushing fatigue that is like nothing they will have ever experienced. The brain being so tired and fogged up that you can’t recognise words coming at you, and you can’t respond because you can’t find or form the simplest of words, and even when you can, your jaw freezes up, unable to speak without slurring your badly formed sentence. How light and noise can beso painful, how reading can make your legs hurt, how do you get people to understand this craziness?
Being housebound for a fair time, I put my frustrations into some word doodling, putting my thoughts into a bit of ‘poetry’ that I pushed out through social media. Surprisingly, people started asking if they could send them to family and friends to help them understand what living with ME is really like.
This gave me a bit of a boost, realising that I could still do something worthwhile and so I’ve written a number of poems on the subject that people around the world have surprisingly taken to, and getting a number of reads on radio and published in the odd book. I’ve posted them all on the website.
Founding York ME Community
Not being able to work, but wanting to change our situation, I now put my limited energies into running The York ME Community. This is a Support and Awareness Group reaching out to let people know that there is support in the York area.
This is for those with ME, their friends, family or just for those who wish to learn more.There is a website at giving lots of information as well as a great mix of local and general stories of interest. Outside of the Covid era, there is a Coffee Club that meets every two weeks for those able to make it, with a chance to natter with those in a similar situation.
For those from the York area wishing more daily interaction, there is also a Facebook Group called ‘The York ME Community’ where members ‘meet’ to talk about all sorts of stuff, not just ME, as we like to remember that this illness doesn’t have to define who we are.
The biggest satisfaction I’ve got from running the group is seeing people coming together, supporting each other, and becoming friends, something that has gone beyond my original hopes of running the group.
Although I get a kick out of the likes of the Inter-Company Fantasy Football League that has brought awareness to businesses in York, and will be forever grateful to the York Inset Scooter Club who had a ride out to the coast raising money and awareness of ME for us, I will always be so very grateful for the guys who actually raised The York ME Community Flag at Everest Base Camp for us!
There have been many great days during my time running the group, but I hope for the day when it’s not needed, when we have raised awareness so much that we have found a cure for this terrible condition.
Having ME has also opened my eyes to other disability issues which I’m working to improve upon, and maybe that’s where my future lies on that lovely day when ME is no more, but that’s a story for another day!
If you’d like to share your life living with ME in the ME & Me Series please do get in touch below.