Hi, I’m Daniel. I’ve been blogging for around a year and a half now but my blog posts cover a range of issues and topics. Often I get the idea for a blog, and then just write.
One of the things that I’ve written about a lot has been my life with ME (Myalgic Encephalomyelitis), a multi systemic neurological condition for which there is still much for us to learn. This new blog is specifically for ME related posts. I’ll still continue to blog about wider issues that are important to me on my personal blog, Talmandan.
I lived with ME for around 7 years during the 90s, ‘recovering’ for 20 years before becoming ill again in January 2018.
I’m a qualified social worker having worked for 11 years in fostering and children’s disability. My understanding of the importance of empathy and attachment has helped me come to terms with my illness and leaving my career behind for the time being, to live on the low side of life.
When I talk about the low side. I’m not necessarily talking about mental health, but the way of living necessary for survival with this illness.
Old adverts for Pepsi max used to tell us to ‘live life to the max’. Life with ME requires us to live on the low side. The phrase ‘on the low’ is sometimes used when people are doing things undercover. Sometimes it’s used in reference to something slightly dodgy that’s being hidden from authorities. Sadly for us, it’s the reality of ME as an invisible illness that has been systematically hidden from the public at large. GPs often have limited understanding of the condition and will make recommendations based on national guidelines which have been evidenced to be flawed, and dangerous. We’re living on the low but not out of choice.
When we live on the low side with ME, we really do live undercover. An international awareness campaign uses the term Millions Missing. We’re missing from society in so many ways.
The low side has another meaning for me also. It’s a field on the farm where I live in rural Northumberland. The low side has ancient woodland and is really peaceful. For me, peace can be found on the low side of life. We have Heron, Deer, Hare, Tawny and Barn Owls, Curlews and Pied Wagtails. A whole multitude of insects and biodiversity, wild flowers and mushrooms. Things grow on the Low Side.
This blog then, is about trying to see things that can grow on the low side of life. We live in a digital world, thank goodness. I’m geographically isolated but I’m tapped into a world of spooniehood through the Internet. Our low side field has two national grid pylons running through it. Yes, it spoils the vista and you can hear the crackling of electricity lines on wet days. On the very top of those pylons runs a big fibre optic cable, which when installed some twenty years ago, amazed us with how much information was being zoomed around the country over our heads.
This feels symbolic to me. Those of us with ME and other chronic illnesses live on the low. We develop skills to manage our meagre energy resources, yet we have a huge wealth of information, friendship and inclusion through Facebook and twitter and blogs and Instagram close at hand. It’s so important that we use these to reach out beyond our limited environments to gain support and encouragement.
I write this also at the start of ME awareness month 2019. News has come this week that there’s been a breakthrough for a potential test for ME. The tide of awareness is turning. We may live on the low side of life, but let’s let people know we’re here, and that we so desperately want to live life to the max.
Join me as we explore the low side of life together. This blog won’t be so much about analysing research or latest treatments, but will come from a philosophical perspective at times. I hope my blog brings hope and I hope it encourages you to keep wading through the thick sludge of existence and cherish the moments of crystal clear waters and occasional refreshment when they come along!
I’m glad you’re here.
6 thoughts on “A new blog for the ones on the low side of life”
What a great way to explain it, ‘living on the low side’, it is as though we exist in an entirely different place to others, forgotten about. So we do what we can to raise awareness and fight, that’s our battles: fighting illness, fighting stigma, fighting for help.
I’m so glad we have internet, so we have support of one another.
Really enjoyed reading this post!
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Thanks for reading!
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Great blog Dan. I would be interested to hear your thoughts on how to explain ME and the way it makes us feel to others – also any views on whether this is a single illness/condition or a collection of conditions under a umbrella term. Perhaps some reflections on those issues in the future.
Keep up the good work of raising awareness and look after yourself.
Thanks. Food for thought! I can only speak for myself but I think ME is different from chronic fatigue, or chronic fatigue syndrome. Like many others, I think CFS just doesn’t cut the mustard as a name when there’s so much else going on!
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Thank you for this! I’m recently diagnosed and also live in a rural spot so this resonated. I’m learning to manage conserving my energy and not beating myself up for what I can’t do, and what I say “no” to. Looking forward to more.
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Thanks for reading. Sorry for what you’re going through. I hope your journey with this illness provides you with some moments of light relief.