Book giveaway!

This was meant to happen last month during ME awareness week, but life, or namely, ME got in the way!

Catherine Saunders over at @Severe_ME on twitter and I have teamed up to offer a free copy of her excellent book, Understanding Severe ME.

Take a look at Severe ME (@Severe_ME): https://twitter.com/Severe_ME?s=09

Catherine has lived with severe ME for many years but thankfully recovered to such an extent that she has been able to write about her experiences and offer insight and support to others.

If you’d like to be in with a chance of winning a copy of her book, please email me at:

thelowsidespoonie@gmail.com

You do need to do a little work however! We want to know what percentage of those with ME fall into the severe category?

So that’s it, answer the question in your email and the winner with the correct answer will be chosen at random.

Closing date is Sunday 30th June.

The winner will be announced on my twitter page @talmandaniel shortly afterwards!

You can access Catherine’s blog here

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The life in things (and reconstruction)

My previous blog contained a video reading and text from a poem I wrote at a point in time where I was starting to wonder whether my situation was going to be longer term and I was having to process this dawning bleakness.

It’s grim indeed. The poem used imagery of dark caves and animal excrement. I’m not sure many people fully understand the extremes of life that we have to face. In my poem, I used an analogy, that what I was experiencing was like old age, “enthused and coming to greet”. I wrote that line after leaving the phlebotomy clinic at my local hospital. This was long before I considered the possibility of using a stick to help my walking and being ok with the social stigma that comes with it. But I was struggling that day when leaving the legalised vampire den. A very old lady with a walking frame was making better pace up the pavement than me!

Sometimes it is hard to really reconcile the reality of our situation, to realise our limitations when the past and our future collide in some sort of mining explosion. For me it was the 24th January 2018. Boom.

So, how do we live with this daily grind of exhaustion, neurological pain and a myriad of symptoms which could invade at any time of day or night? That’s not a question I can answer on behalf of the ME community. We all have our ways of managing. Sadly some can not, and suicide is a considered option, especially when there is no end in sight.

I have to say, almost a year ago, around my birthday at the end of May, there was one moment in time where I felt I could get in my car and drive off a bridge. Only once, and only very briefly. My world was collapsing. I know I would not have done that, but that fleeting moment gave me a huge insight into the experiences of those who are brought low by ME. ME leaves us feeling powerless. We have little agency. How can you plan anything when you don’t know how you’re going to be tomorrow, never mind next week?

Yet, I’ve learnt to, as an old Sunday school song I used to sing went… “smile at the storm”. Where everyday we lament the death of things, we have to also celebrate the life of things.

When I worked as a Supervising Social Worker with foster carers to support them in caring for some of the most vulnerable children in our nation, we used methods of positive psychology to help carers deal with challenging situations. It sounds like something you might find in the bargain basement self help section of your local discount bookshop.

Positive psychology isn’t just thinking positive thoughts, but neither is it some impenetrable theory.

Mindfulness, gratitude, encouragement, seeing the bigger picture, empathy, vulnerability, self-care, seeking and accepting support, realising self-worth, knowing our limits and being content within them (acceptance), verbalising the problem, reflection, and embodiment are all things that come under this huge and slightly vague banner. Sometimes utilising personal faith traditions is really beneficial in these times, however its good to recognise when they may be weighing us down further due to unfulfilled expectations.

So with all this knowledge, you’d think I’d be in a good position to work through my own travails and life turmoil. Not so. But in time (and with a great therapist who gives me a great deal) I have been able to recognise and name my own feelings and the often resulting behaviours of stress and grumpiness that come out of these feelings of powerlessness.

For me, being thankful for the all the positive things that have come out of my illness is really important. We had to sell our house and move from city life in the East Midlands to my parents’ farm in Northumberland. Our children have a much improved quality of life and seem more carefree. As a family we’ve laughed more together in the past 9 months than in the preceding stressful years. The life of things.

One of the greatest ways, for me, in managing the huge life and health change has been meditation and mindfulness. Now, rather than stressing about when I’ll be able to get back to some form of my career (after the summer? after Christmas? when I’m at THAT level of consistency), I choose to live each day as THIS day, in THIS moment, to recognise that striving doesn’t help, but to be present with my pain and weakness.

Today I collapsed while reaching for a laptop charger on a shelf. My legs just gave way. When I was an adolescent living with ME this used to happen quite a bit. Sometimes, that version of me feels like he was living in a distant universe of fuzzy memories, and I can analyse my teenage self like I might a child on my old social work caseload. I’ve often wondered whether my younger self sometimes collapsed as a form of behaviour because back in the mid 90s ME (much like now sadly) was disregarded. In my desperation, did I exaggerate to get people to see my plight?

After collapsing today and grazing my knee, I feel like I have to apologise to my younger self for doubting my memory of his lived experience. Somehow I wish I could get in a Tardis, hop out and spend some time with my weary 13 year old self and say ‘dude, it’s going to be ok, just take it one day at a time, watch the rain drops on a leaf, listen to the evening blackbird song, stay in THIS moment rather than striving for THAT which is currently unobtainable, and for goodness sake, when you do feel a bit better, don’t go crazy’. I might also have a sneaky game of sensible soccer on the Amiga 500!

For me, in letting go of my attachment to desire for something that is currently out of reach, I’m able to deal with the grief of what I’ve lost, and to acknowledge the present for what it is, a moment in time, a story, a construct (Please don’t misunderstand, I’m not negating the horrific reality of our lived experiences through this way of seeing). Tomorrow may be a better day. This is all a bit abstract, I know, but I’ve found that these tools for seeing and knowing are really helpful for me.

Yes, we need righteous anger at the neglect and disdain we’ve experienced as a demographic of real life individuals, which is why ME awareness week and Millions Missing are so important. we need to hope and expect change for better research and treatment and an improved standard of compassion from professionals and politicians. Yet, we also need to survive the day, and then the next one. For me, it may be mindfulness and meditation which enables me to lay down my striving and just be. For you, it may be a Game of Thrones box set and a call to an old friend.

I hope you find your own coping mechanism to enable you to find purpose in the mundanity, and the inevitable passing of time.

What do you do to manage the frustrations and mundanity of each day? Do you feel able to smile at the storm? If you can’t and just feel anger, that’s OK. Be present with the anger and then release it to the wind. Open the door and let it out, like a cat who won’t stop asking. The anger might be back tomorrow, or next week. That’s OK. Be present with the anger and then release it to the wind. Again.

My mum has MS. She’s doing really well, however around 4 years ago my dad finished his project to convert part of the old barns on the farm into a single storey home as a way of supporting her into the future. What used to be the area where the fleeces were stored at shearing time became the dining room. The workshop is now a kitchen and the old kennels, the spare bedroom. My dad reconstructed the building and created something new and beautiful from what was slowly falling apart.

Dear friend, may you find a way to reconstruct this life, creating beauty from the little messy corners, and may you really and truly experience and savour an awareness of every moment of those rare and wonderful days when there’s blessed relief.

The Wilting Way

Please note, this video contains mild swear words.

I wrote this poem in the summer of 2018, around the time of my re-diagnosis of ME. I was in a pretty dark place, however I think it helps highlight how terrible this illness really can be and how it impacts on those of us who live with it. I’ve recorded it here for ME awareness week 2019.

THE WILTING WAY

Too many steps. I’ve gone too far. Enticed beyond my boundaries, an invisible bungee hauls me back, makes me crash. Tortures beyond my limits. My pack is empty yet heavy, holds nothing to sustain my walk. The journey is no longer the bright sun-dappled path, no longer the winding and peaceful summer’s climb.

This is the wilting way.

The wilting way is the fork in the trail I did not choose, the dark route with an alternate destination. The wilting way drags me to quarter-life and fractions reduced. The way looks covered with roots and boulders and very wet moss. There is music in the trees but it’s garbled and dross, taunting as I long for the hymn and the song in my heart, it fuses with the downpour.

The wilting way closes in. Perhaps if I’d done this, or rested like that, I’d still be on that steady warm path… But somehow the wilting way was always going to find me, like an escape from Alcatraz, I’d always be back.

It’s brought me to the caves this time. I’d gamble against this, take another hell instead, but the odds were never in my favour and the caves were always reeling me in. I could hear them in the bitter tone of the music that’s incessant in my head, feel them in the fizzing feet and in my wrinkled fingers, like old age, enthused and coming to greet.

The caves echo, even repeat my empty cry. I’ve come too far this time that I’d rather have the darkness, it hurts to walk in light. The occasional shafts of sunlight attack my every part, I’m crawling on my knees this hour and the mud and bat shit fill my lungs, oh what a wretched sight.

Don’t give me twee platitudes as you watch with your smartphone and vice. Don’t speak down to me with sympathy, this was not my bloody choice. Don’t tell us we’re not worthy as you picnic on the heights. Come, sit in the bat shit and stagnant water and try and understand this plight.

We professionals with first class honours aren’t lazy, it isn’t in our mind. There are others who didn’t even get that far and have existed only in their beds.

There’s a black spot on our hands and the exhaustion came as if by spite. So come stagger with the missing and find us in these caves, truly see us in the clarty mess, listen to how we got here and furnish us with grace. If you could help us out a bit and off the wilting way, we would join you on the mountaintop and revel on that day.

Walking3

(photo from a mens walking weekend up Kinder Scout in the Peak District in January 2015)

The death of things…

Growing up on a farm is a unique experience. The fragility of life is shoved in your face whether you wish to see it or not. Like tiny cold lambs fighting for life in a heater box minutes after their birth into a downpour, or once a cat had kittens somewhere and then walked them through the cow shed with disastrous consequences.

My parents went to Australia recently and I somehow ended up becoming a default farm manager who didn’t have the energy to farm. We had cover for all the work, but in that first couple of weeks lots of things went wrong, from machinery breaking down to a whole barn of cattle escaping on a dark Sunday evening. The vet ended up here more than I’d have liked.

On one afternoon Jack the vet was here seeing to a pregnant ewe who’s lambs had sadly died. Jack worked hard to get the lambs out in order to save the ewe as I leaned against (held onto) a cattle barrier while going into a depleted energy overdraft. I wanted to know the outcome. In this moment the sheep meant something to me. Jack achieved the goal but the ewe was worse for wear and she sadly died late the next day. I was starting to see a small improvement in my own health and I, probably stupidly, decided that I wanted to be the one to take the sheep to the end of the farm track on the day after she died, to be collected by the people who collect the dead.

So there I was, scooping the sheep onto the telehandler bucket and taking her on her final journey down the quarter of a mile track. My energy counter ticked away as I felt the cab shake when I hit a pothole and as my body drained with vibrations of the engine. I went straight to bed as my energy was depleted and I stayed there for a while. The death of things.

Yesterday I had a twitter interaction with Carly from Southampton after I lamented the loss I felt from no longer being able to go to gigs or play music with others. Carly shared that she used to be in a band which played gigs most weekends, and that now she struggles to listen for more than 10 minutes. If you’ve played music in a band with others, you’ll know that there is a synchronicity and synergy that resonates something deep within us, especially when you end up going somewhere you hadn’t planned musically and everyone’s together. Good times! Like Carly, I miss those moments.

When you live with ME you have to journey through lots of little and some big deaths. Friendships, work environments, sports, music and other leisure and faith activities. Sometimes you have to grieve the loss of family, even though they haven’t died. Processing these deaths isn’t easy and if you’re anything like me you’ll wrestle with these losses and go down kicking and screaming.

Thankfully my parents returned from Australia and I resigned my proxy overseer role on the spot! The good news is that our lambing time went really well and the weather has been good. No other sheep or lambs died and we had a number of triplets who have thrived. Since that ewe died on a dull and muddy day in early March, spring has truly sprung on the farm. There seem to be lambs and calves everywhere, blossom is in the trees and everything is turning green at an incredible rate. New life springs where death was found.

Living with ME is soul destroying. It eats away at our identity. It seems hard to know who we are at times. What I’m finding is that I have to look for tiny shoots of life within my limited ability. I’ve found a new joy of reading, especially nonfiction. I never really read nonfiction before. My mind was too full of work reports and panel meetings and case conferences and policy and legislation and health and safety and data protection and reviews and HR staffing issues and… Now I enjoy learning and reading for reading’s sake, even if my brainfog can’t withhold much of what I’ve read.

I truly hope that you can find little shoots of newness this spring in the rubble of a lost life.


A new blog for the ones on the low side of life

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.

DSC_0016

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.