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.