I wrote a new song during ME awareness month 2021 and thought I’d share a little about it in this blog.
There were so many people sharing their experiences of ME in so many ways during ME Awareness month this year. I particularly enjoyed the MEAction artist’s salon which was an honour to attend, and seeing Anna from ME, Myself and I breaking through fundraising records with her Blue Sunday Tea Party for ME initiative. I’ve also enjoyed reading ME Association Champion Blogger posts throughout the month. While some expressed frustration that there appeared little media coverage, what struck me was how important the month is in building community. I’ve made two new music friends this month and after seeing my video of a song I wrote, we’ve discussed making music together! One friend even took a recording of my heartbeat and made it fit a song I’m working on while a third ME friend is going to help with playing bass!
So for me, ME Awareness month this year has been about affirmation and solidarity.
I wrote the song ‘Dreamers in Disguise’ while thinking collectively about the global ME community.
We are finite and we are limited. We can grow but we can’t catch the light. We are crowded in but we isolate. These days they are unforgiving.
We are reduced and we are hidden. We see beauty through a darkened lens. We are hopeless but we are hopeful. We are not what we used to be.
I wanted to capture some of the feelings and universal experiences that are lived out by those of us with ME, but I also wanted the song to be a call to the medical community to not ‘hammer down the nails on us’ and to ‘give us empathy and see, just how much it means to me’. When empathy is used during an interaction with a medical professional (or anyone for that matter) towards someone with ME it makes a huge impact. I love to hear when someone shares online about an occasion when someone has acted towards them with compassion. While there may be little in the way of treatment, an ear that attempts to understand can be a soothing balm at times. Every step towards awareness is a step away from stigma and ignorance.
We are dreamers in disguise. There is so much potential among those of us with ME. And these things are said so many times, but while trying not to sound cheesy, so many of us are dreaming of the life we once had, or a new life that we are keen to get started.
This song collapses into a bridge of woahs. Sometimes I think songwriters use a woah or two to fill space in a song when there’s no decent lyrics to be found, but for me, these were cries of angst for all of us who have been impacted by ME, but also maybe cries that call for unity, and a demand to be heard. A ‘woah’ can express a lot of things.
Before the final chorus I included a spoken word insert:
My dream may be a stunted dream, but it is a dream nonetheless.
We’re allowed to dream of better things. Sometimes our dreams are as simple as making a meal or sitting in the sunlight. They can be dreams that are reined in at times. But they’re dreams nonetheless. I’ve been reading Jessica Taylor-Bearman’s new book, A girl of one room. She had a seemingly simple dream to stand up. And she got there! To others, our dreams would seem silly. My dream is to work a few hours a month in some remit as a social worker. It actually seems like that may be a possibility in a behind-the-scenes remit for me in the medium term future: something I didn’t think would ever be possible for me again. I’m excited but a little nervous about managing a small amount work alongside ME but thrilled that I could possibly salvage some embers of a career I thought might be lost.
Some in the field of psychology may say that those us with ME are choosing, whether consciously or not to escape the challenges of the world. The reality couldn’t be further than the truth. We’re dreamers in disguise.
Link to song lyric video is at the bottom of this post.
I’ve often felt that the concept of being ghostlike was particularly relevant with regard to ME. Google defines a ghost as ‘an apparition of a dead person which is believed to appear or become manifest to the living, typically as a nebulous image’. So often, living with ME, you feel like the image of a person, a dead-like person. We’re like a shade from greek mythology only a grey imprint of the person we were. Sometimes I feel like I literally look grey in the mirror.
We’re like persephone, the beautiful god who was bound to live in the underworld for so much of the year before briefly returning to the land of the living, only to have to return to her home below in an endless cycle.
I wrote a poem around the time of my diagnosis called ‘ghost of me‘ and this song builds on that theme.
The song starts with the idea of being rooted and planted like a tree, existing but immobile. For me, these lyrics have duel meaning. There’s an active frustration with being rooted to the spot (I have rarely gone beyond the end of our farm track in the last 18 months) and the isolation that it causes, but there’s also the learning and growth that comes with being rooted as a person. To know where you came from and what values are important to you. We carry on to lines about waiting while others dance and play. I think of my children who live to adventure and explore and how I can’t be part of that process, only to watch and vicariously observe. My wife had a party for her 40th last year and I left well before the real boogying began!
One of my favourite things is getting out into open countryside so walking has been an important part of my life. Growing up as a farmer’s son I remember trying my hardest to walk alongside my seemingly giant dad over the rig and furrow of the top side field and always having to half-jog with his strides on a spring morning while looking the stock. My dad and I have often talked about exploring walks in our local area, looking at maps. I’m just saddened that we never made more time before I got ill.
One of my favourite lines from the song is the idea of being a preacher without a choir. This isn’t about religion but an analogy for ME patients preaching our loudest to anyone who will listen about the terrible plight of ME and the need for funding and research. For me the choir would be the medical community as a whole who aren’t generally there to endorse and promote our message. And many of those who should be supporting us from the field of psychology are out on the streets effectively encouraging people not to even enter the building with their misrepresentations.
Yet despite the melancholy, I wanted to bring some light. I have seen some improvements over recent weeks as I’ve tried a new medication to fend off the post exertional malaise. It’s given me a glimmer of hope that there could be further milestones along the way for the ME community.
“Sew me into a new dream”
My daughter, wife and I have been watching the great British sewing bee recently. I never knew I’d become fascinated with learning about how our clothes are made! We watch intensely as we wonder whether the mens’ jacket or ladies’ dress is going to be finished on time. And when it’s not there are many tears and cutting criticism. As a community we’re desperate for a dream to be sewn into but we’re too ill to make our own dreams come to fruition. This is a call to our family and friends, to the research community, to our own GPs. We need advocates to stand up for us. We also need each other, to help us to keep believing that there may be better days ahead. If there is anything that the ME community is good at, it’s being there for each other. I’m forever grateful for those friends I’ve made along the way who keep me going with silly memes and encouraging words.
My song ends with the chorus, bringing us back down to earth and the reality that breaks through our dreams. I thought the analogy of a mirage was fitting. We look inviting, we can often look really healthy, yet get close and our lives consist of thinking that it would be nice to have fresh pillow covers but lacking the energy, of shoving a ready meal in the microwave or eating cereal for lunch because our arms are too heavy to make a salad or a sandwich.
Thanks for taking the time to watch and to read this blog. I’ve really enjoyed slowly completing this project over the last couple of weeks. It’s involved my friend showing me how to use his recording equipment in a cold garage, hours of downloading and learning new software and asking my brother to add his deep singing voice to the bridge and chorus. I’ve probably pushed my energy envelope off the table but I have a sense of achievement. My hope is that the heavy nature of the song will help people to grasp just how debilitating ME is for so many of us.
This ghost of me rages behind the front door, waits in the spaces between failure and the cost, breaches the chasm of decades fulfilled and creeps behind my weary shoulder. This ghost of me drags its feet, delays the party train and relegates me without permission. Who do you think you are, really? Who are you going to scare?
This ghost of me thinks it owns this day, haunts my set mind and tries to agitate. I’m not going to play your joy draining games. This ghost of me reminds us of graces lost and the mud at the bottom of the dene in which I’m stuck. Who do you think you are though, really?My graces are richer today than ever before. I find peace in the places you roam, this deal is not done, and whom do I fear? Not the ghost of me.
I heard that the ME Association’s theme for ME Awareness week this year was our experiences with health and care professionals. As a qualified social worker with 10 years’ experience, and another 6 working in social care, I got to thinking about my own interactions with health professionals over the three years since I became ill with ME again, and my previous experiences as an adolescent with ME over 20 years ago. There is often seen to be a divide between health and social work professionals regarding the social and medical models of disability. A medical model looks to solve the medical problem and enable an individual to move on with their lives within a society built for able people. A social model would say that society needs to adapt to enable disabled people equal access to work, leisure and services.
The reality is however that it’s not quite so black and white. We need a strong medical approach and the social model is important but I’m inclined to think it can only go so far for those of us who rarely leave our homes (although we’ve seen inadvertent inclusivity as a result of the pandemic and an increase in internet video communication, sadly this wasn’t driven by disability inclusivity but public demand for services). My wife is a qualified district nurse. So much of her specialist community degree training emphasised the importance of community nurses working in a holistic way to see how a patient’s whole life situation may be impacting on their health. On a basic level this may mean working with a patient with breathing difficulties and helping them to rethink owning a parrot and highlighting the dust and feathers everywhere in the home while acknowledging the emotional toll that a decision to part ways with the pet would have. An insight like this may be lacking for professionals chained to their consulting rooms. Sadly, so often social work, which should be the bastian of holistic care in contrast, is so underfunded that assessments become formulaic, service-led and process driven, looking to solve a specific problem and close a case rather than having the ability to walk with individuals through their challenges on a longer-term basis.
Over recent years a Scandinavian model for client engagement called social pedagogy has become more popular, but perhaps may never gain a foothold in the UK due to our established and risk averse systems. In fostering, social pedagogy is adopted to place experiential activity at the centre of the therapeutic relationship. It may mean sitting on a bed with a child who has had a nightmare when all the safer caring advice would look at risk of allegations in this scenario. With pedagogy, solutions come through relationship rather than process. I sometimes think that if professionals were able to spend more time with their clients we would see a much greater level of understanding, especially with regard to ME, where GPs have to make a judgement about what’s best for their patients without a lot of time to process what else might be going on for them.
Over the last few years, with regard to ME/CFS, this has meant referring to NICE guidelines on a condition which they may still have little knowledge of. If they don’t have time to see the whole person, they may not see the wider struggles that we face, and fail to see why recommended treatments are not appropriate. So it’s our job as patients to try and help develop the patient/doctor partnership and also do our best to educate our GPs – they can’t know everything about everything but it’s really about how we approach the relationship in order to enable them to ‘hear’ us. Sadly patients should not have to feel like we have to perform to ensure our GP believes or understands us.
At present, within the contested world of ME treatment and support, or lack of it, it feels like as ME patients we’re trapped within a divided world of opinions and I experienced this to some degree through my diagnosis three years ago (2018). I initially saw one GP at our practice who was very dismissive of my concerns regarding nerve issues I was having before I became fully ill with ME a few days later. I decided that I would book an appointment with another GP when I was hit with the post viral condition which I now believe to have been a development of mild ME that I hadn’t realised I was carrying.
Finding a GP who was empathetic was a massive deal for me and it’s only years later, having had regular therapy, that I’ve been able to see how embedded a desire to be believed was for me and how I’d buried the stigma and shame of my teenage ME years (I recovered when I was 17), of not being believed by many doctors. It’s important to understand how our interactions with medical professionals can lead to a lot of trauma when we have not been believed in the past. When I was 11 or 12 years old, a child psychiatrist stated that I was a school refuser and got me lifting medicine balls as an in-patient. My own grandfather didn’t know what to make of my illness, so just stopped talking to me. These things had become so much deeper within my psyche than I first realised, so that when I came to explain to my GP why I thought I might have ME again, despite wishing I didn’t, I was acutely aware of how much this person held power over me without fully processing why. Would he issue a ‘fit note’? Would he listen and accept when I stated I did not wish to attend any sort of fatigue clinic or take part in (now discredited) graded exercise? Would he diagnose me with ME as I wished (if it was to be ME), or CFS, which I was desperate to distance myself from, because it felt like it fed into that feeling of being disbelieved.
After months of tests coming back clear, I knew we were getting closer to the point where I would need to be diagnosed with something. My GP was great, and experienced, but I could sense a tension within him, that he wasn’t fully following NICE guidance with me, and he said that as he had not had a case of ME before he needed to speak to colleagues. It’s important to remember that while we know ME is actually quite prevalent in society, there may be many experienced GPs who still have not had someone on their caseload with the condition.
During this period of waiting for a diagnosis, I needed to update my sick note and my chosen GP wasn’t available. I had to speak to another GP to get this formality completed. I soon realised that this particular phone consultation was going to be a matter of me jumping through hoops. I was told that I needed to keep up my activity levels, that it was important to remain active. I felt my body tense as a response to decades of repressing the impact of not being believed. Being told at the age of 11 or 12 that my lived experiences were not valid, that I was somehow not in the club of ‘normal’ people and that there was something going on in my mind that I’m somehow just not mastering was devastating. For this to be inferred to me as a professional adult felt hugely patronising.
My GP did diagnose me, albeit reluctantly about six months after I initially became ill, and an MRI scan and further final blood test. He also agreed to diagnose me with ME/CFS, of which I was grateful. Within a month of my diagnosis, my wife, kids and I moved away from our city home in the Midlands to my parent’s farm where I grew up and so I never saw that doctor again after my diagnosis. And I didn’t get to thank him for his gentleness and listening ear. I do remember however that one of his final remarks to me was not to listen too closely to internet activists. I’m not sure what he meant by this exactly as he didn’t go any further. I suspect he’d come across an article by one of the now discredited PACE trial authors, or, the colleagues he consulted included the doctor I’d spoken to on the phone for my sick note that time. I am now one of those activists.
Since being welcomed back into the ME community I’ve seen very little in the way of aggressive or threatening tweets but I have found an army of people who are passionate about educating others about the realities of this condition and the dangers of CBT and graded exercise. My diagnosis, and its relative ease has led me to often ponder as social workers do, about hidden institutional cognitive biases in health care which lead to discrimination. As a white, married, cis gendered heterosexual professional male, I was aware of the power dynamic for me in trying to persuade my doctor that I had ME. Last year I was part of a twitter discussion about diagnosis for people with ME. Overwhelmingly, on an anecdotal level, women took much longer to be diagnosed than men, and I also read about the specific challenges for black women in navigating chronic illness, diagnosis and the health care system. I wonder if my GP would have been so quick to diagnose me if I had been a young black single mum? Or a young Asian man? How much do subtle ingrained institutional cognitive biases impact on a doctor’s judgement, whether they like to admit it or not?
When reflecting on my interactions with doctors over the last 3 years, I feel that my experiences could have been much worse. On the day that I went home from work at lunch time, feeling like I had the flu without the cold like symptoms, I tried not to entertain what this might mean for me. My stress levels went into overdrive which probably didn’t help. I had family and responsibilities and wasn’t 13 anymore. What I didn’t expect was that really very little had changed in 20 years since I was last in the ME world, on a macro level for those fighting faulty thinking. In fact things had perhaps become worse. I had been vaguely aware of the PACE trial (research based on bad rationale) during those years through facebook friends who had ME but I didn’t realise the aggressive extent to which ME was trying to be claimed as belonging to the field of psychology. Which makes finding an affirming therapist a tricky job!
My relationship with my current GP of almost 3 years is good. We don’t often talk but when we do, I always come away from an appointment feeling that we’ve worked together on an issue and that he sees me as the expert in my condition. I can only hope that this partnership approach becomes more widespread and that some form of creative and holistic work, if not a total pedagological approach, becomes the norm within primary care in the future. Believing someone doesn’t have to cost anything but can potentially have a significantly positive impact during those vital early months of ME when the most essential thing to do is rest.
For reference, I have a nearly 13 year old daughter and a nearly 10 year old son and I wrote this mostly before the Easter holidays. I recently tweeted about parenting with ME and asked for hot tips. I’m going to write a follow up post including some of those responses, so thanks to those who contributed!
Before I begin, I wanted to acknowledge those who have ME and for whom having children is not a possibility. By writing about my parenting experiences, I hope not to exclude from my blog those who grieve the opportunity to have children despite this particular blog series having that current focus.
Yesterday was a tough morning for me and I had one parenting fail after another. I don’t always know how each day is going to pan out energy wise and sometimes I don’t realise if I’m having an ME crash until I’ve got up and put the kettle on. My kids are great, and have a good understanding of my illness, but it’s a lot for them to carry. With them going back to school and getting used to the change in routine, there’s a lot for all children to deal with right now. There’s fatigue for them too in managing the effects of dealing with busy classrooms again, navigating friendships after time apart and adjusting to new expectations around masks, testing and social distancing. So in our house we’ve had a couple of big morning meltdowns recently despite our best planning. That’s really normal and to be expected but it can have an adverse effect on our health as the PEM kicks in.
I think mornings before school are the most challenging time of the day for parents and children to manage. It’s our job as parents and carers to help regulate children’s emotions and provide a safe space for them to be able to deal with transitions and to vent emotionally, and this job starts the moment we get out of bed. Often children don’t have the ability to put into words what they’re feeling in their body about the day ahead so it comes out in anger or a stress response. As a professional I’ve spent thousands of hours sitting with foster carers on sofas and at kitchen tables, listening and supporting them in behaviour management and helping carers to provide a secure base and a positive environment for the children in their care. If application of head knowledge on parenting was so simple, social workers and psychologists would have the most well adjusted and emotionally intelligent kids in any community. I’m pretty sure that’s not always the case. Sometimes children push our buttons, we can form unhealthy response patterns, get stuck in ruts, or end up going around in circles.
I’m sure most parents have some variation of these thoughts each morning before school…
Why can’t they just do the simple thing that I’ve been asking them to do for years?!
Why don’t they listen to me?
This is not the time for them to be getting stressed about something so inconsequential!
We need to be doing this right now, not that.
Why are they taking so long? I don’t have time/energy to drive them to school if we miss the bus!
It’s how we process and act on these thoughts and frustrations as parents and carers, and how we respond to our own stress that is often pivotal in how that busy hour or two before school pans out. Are we supportive and encouraging in our interactions, do we recognise the things that feel big to them or do we increase their stress levels by letting our own bubbling emotional messiness rise to the surface?
For anyone in a parenting role, the ability to respond to our children varies depending on our own capacity to function effectively. My greatest challenge between 6.50am and 8.16am is how I navigate interactions with my kids. With ME, the ability to respond to our children’s needs is hugely impacted by how much energy is in the tank, whether we slept well, or at all, how thick the brain fog is, pain levels and on some days, whether we can actually get out of bed. Sometimes my brain fog will mean that I think I’ve asked child no.1 or child no.2 to do something and then when I see that they haven’t done it, I’m using a firmer voice. When actually, that’s the first request and they rightly feel that I’m being unkind when they didn’t know I wanted them to do something in the first place. As parents, it’s our responsibility to help set the emotional course of the day for our children, but we can easily mess up their trajectory because of our own exhaustion. It’s no one’s fault, but we do need to think and act intentionally to achieve the best outcomes. And in the bigger picture if we can get those morning interactions right and things go smoothly, then hopefully the impact of Post Exertional Malaise on ourselves will be reduced because we’re not stressed to a frazzle by 9am and we have less cortisol, the primary stress hormone, and adrenalin flooding our system and increasing our heart rate.
Sometimes we need to find a way to step back, reflect on our own stress response behaviours and consider how we present ourselves to our children.
With ME, our condition fluctuates vastly at times and so does our ability to function. Exhaustion has a huge impact on our ability to think straight. One of the helpful things I remember from training by a child psychologist was the analogy of, as a foster carer, being an actor on the stage of your home. I think this can apply to parenting generally: the need to put on a hat and leave your own emotions backstage until you have the chance to provide self care and process them effectively. This isn’t about negating one’s emotions in an unhealthy way, but to recognise how important it is that we help our children by co-regulating their emotional journey. We’re the adults. When we respond to our children with warmth one day and bluntly or harshly the next with no changes from them, we risk leaving our kids open to forming anxious or avoidant attachment styles. This is heavy, tough stuff and we can carry a lot of guilt for not being the parents we so desperately want to be. Yet it’s so hard to feel in control at times when we don’t know up from down and we have wobbly legs!
I’m writing this blog for myself to process some of these themes, as much as for anyone else. But I also want to reflect and realise that I’m mostly doing the best I can. You’re mostly doing the best you can. When I’m grumpy with my kids, I know that’s not me, it’s the exhaustion. How do I perform as an actor when I have my hands tied behind my back?
Some days are just disasters and can’t be avoided. Some days just naturally go well and the sun is shining. I think some days, when I’m feeling rough but not too crashy, it is possible to find creative ways to navigate to a positive day ahead without too much added exertion. These are some of the things that help…
Planning: my kids have stepped up recently to making their own packed lunches the evening before. We’re being more intentional about getting them to check they have all the clothes they need for the next day as well. If they have everything they need in the morning then there’s less pressure to find socks 5 minutes before they leave the house in a messy frenzy. Of course planning also requires that we have already found the energy to actually wash their clothes or check they’ve done it when you give them more responsibility!
Eye contact, physical touch and communication: we know what it’s like to feel like an ME zombie in the morning. Everything aches and the sunlight burns our eyes. The simplest option can be to go through the physical motions of completing tasks and just get through it until we can climb back into bed. Sometimes though we can forget to really engage meaningfully with our kids. A hug, pat on the back and eye contact don’t have to take much energy but can help our kids feel seen.
Music: some mornings as parents with ME we just need as much quiet as possible just to deal with the two hundredth alcohol-free hangover in a row. But I’ve also learnt that, on the mornings I can deal with music, it can create a positive environment. I have a ‘joy rising’ Spotify playlist of happy, boppy songs which I play sometimes. My daughter might dance a bit between tasks and my son will likely insert the word ‘fart’ into lyrics.
Humour: this can make a huge difference in the morning and can turn the emotional temperature in your favour. See fart songs above. It’s important to be mindful when it’s not the right time to instigate humour. As, like Monty Python’s deadliest joke, we need to be wary of weaponising humour in our interactions with kids.
Silence: sometimes silence is good. Sometimes it’s needed. At risk of contradicting myself, natural, unforced silence can be beneficial at the right times. As a person with ME, I’ve fallen in love with silence. Moments of silence in the middle of a storm can be helpful for children and young people to centre their thoughts and all you can hear is the crunching of cereal. It’s about sensing what children need on any given morning and trying to find the balance when different children need different things.
Warmth: Being physically cold will affect most people’s mood. Creating the right physical environment can really help children and ourselves start the day in a more positive mindset.
Tag team: If you have a partner who parents, communication and recognising your strengths and weakness can be really important. Being clear about roles and boundaries helps kids to know who to go to at different times.
Modelling: Its important that we are able to model healthy emotional restoration with our kids. When I can stop and reflect and realise that I’m being unduly harsh or snappy with my kids, I’ll look to apologise and explain that I’m struggling that morning. While it’s not always easy to calm our own minds, these moments of restoration can ease tension and model positive strategies to manage stress.
Ultimately, parenting with ME is really tough. For me, lockdown and home learning was a time of experiencing huge guilt at leaving them to the laptops while I rested and my wife worked hard from home upstairs under new circumstances. While we can feel that our kids are being negatively impacted by our illness and them having reduced opportunities, it’s also important to remember that they are learning a huge amount through our illness. They’re learning empathy, compassion, emotional intelligence and a whole bunch of things that other kids in school won’t necessarily learn in the same way. Somehow gaining insight into suffering from a young age also brings maturity. It’s a burden we may not wish on them. But I think it often breeds resilience and that’s something all kids need in the uncertain times ahead.
If things are so tough that you’re struggling, please seek support, whether that’s informally through needing to vent to a family member or friend, or practically with care tasks or behavioural advice. Social care may seem like an exhausting minefield to navigate, and often it is, but there is the potential for support through direct payments and signposting. If your child supports you, they may well be a young carer and there are organisations who do excellent person centred work locally with young carers.
I haven’t blogged here for a while. I’m not sure if it’s just been lack of inspiration, or the busyness of trying to keep my head above the water with my kids being at home and trying to support them with remote learning, while trying to find time to rest and my wife also working from home so there’s always a buzz around the house. I know a lot of families have struggled, as we have at times, but it’s also been a time of bonding and enjoyment for us.
We do have the benefit of living in the countryside and the kids will often go out and take the dog for a walk without me having to worry about them, so we’re in a very fortunate environment to be living in lockdown!
While I haven’t blogged much recently, I did feel that I wanted to pick up my guitar again and I received new strings for Christmas. I felt an urge to write a song this past week, and having not played or sung much in the last year, it felt refreshing to briefly have the energy to play and record what I’d created.
My inspiration for this song came out of the recent difficulties people with long covid are experiencing in finding that they, like those of us with ME have found for many years, are often being disbelieved or expected to exercise their way out of their condition. Those of us with ME have great empathy for long covid patients and had a sickened feeling when we discovered that graded exercise is included in recommendations for recovery. So many of us were very grateful for the recent article by George Monbiot highlighting the battle those of us with ME have faced and how effective research needed to be a high priority for both cohorts.
So my song is about medical gaslighting and ME, but it could be applied to any circumstance where there is abuse of power. While we can’t be encouraged that there will be a culture change any time soon, we can look to those in our communities who shine a light for justice and hope. One of those people for me is Whitney Dafoe, a young man with severe ME who has recently been able to write his thoughts down and be a massive encouragement, that through the work of his father, prof. Ron Davis at Stanford University and his team, there just may be progress in finding diagnostic tools, and somewhere down the line, eventually an effective treatment. We can also be hopeful that the forthcoming DecodeME study will be fruitful as we post our saliva samples for inclusion in the year ahead.
So, never give up dreaming. When I think of the things I want to do if ever I get the chance to recover, they are simple things… Hill walking with my kids, a night away with my wife and maybe the odd folk gig with my brother. I’d love to return to my social work career, but that’s not a priority when compared to the desire to do the things that make life worth living.
In the meantime though, it’s our own illumination that keeps us going. I’m forever grateful for my ME friends who just get it and how as a community we keep each other going and bring light despite the darkness.
Runaway Runaway They got your head So runaway runaway You’ll keep your heart Don’t play the game play the game You can’t keep their healing
Runaway Runaway They got your head So runaway runaway You’ll keep your heart won’t you stay won’t you stay With me, tonight we’re dreaming
Tonight we’re dreaming
Skip the park and the play There’s no returning There’s no lamp and there’s no path Just our illuminating Just our illuminating
Hold true, they don’t have you where they want you Stay strong because you have it all inside you So never give up dreaming
In July every year there’s a day on the farm that conjures up old black and white photographs of English hay time in the summer. Back in the day, the villages would be quiet as anyone who was willing and able would be over at one of the farms helping to stack the hay in the fields. I have photos of this heritage in both my father and mother’s lineage. Nowadays there’s not a lot of manpower needed and most of the feed for the cattle over the winter is from silage (grass stored in a silage pit). This involves a number of tractors, a JCB and some big machinery coming onto the farm and getting the grass from the field and into the silage pit as efficiently as possible while hoping it doesn’t rain. Trailer after trailer deposit huge mounds of grass into the pit whilst the JCB telehandler compacts it and ensures uniform coverage across the pit. At the end of the day after hours in air-conditioned cabs, the contracted crew of men climb down from their steeds and help cover the grass with black sheeting, which is then topped with old tires which have been neatly stacked by my Dad over the previous winter as the pile of grass steadily shrinks to feed the cattle in the sheds. What you have is a rather large slow cooker.
The tyre throwing can be fun, but many of the tyres will have stinky old water inside and if you get your throw wrong you can end up with a welly full of cold water and old leaves. Or when removing them to reveal more silage during the winter, you can have frozen fingers and ice in your boots!
I love and dislike silage making day in equal measure. It’s like the glorious smell of your school field being mowed when you’re a child x50. A number of fields get a haircut and there’s a freshness in the air. Flocks of seagulls appear from seemingly nowhere and scavenge the newly shorn land. Yet now as a person having lived for the last two and a half years with ME I’m left with an enduring pang of guilt at not being able to help fling tyres about the place. This was the same pang of guilt I experienced as a teenager living with ME for 7 years in the 90s prior to my significant recovery. There’s something very physical and masculine about donning a pair of gloves and tossing decades-old Ford Escort tyres which land with a satisfying thud.
Silage day happened here recently and I happened to be outside when two of the silage making men walked past the house after the task was completed. I said hello and we had a quick chat. For better or worse It’s a cultural norm in the North East to talk to people. The probing question/comment I half expected quickly rolled off one of their tongues “You missed the tyres!”. Here was a man with a weather-beaten face, looking at me, a much younger, healthyish looking, if not slightly overweight man and wondering why I hadn’t been at the pit getting my hands dirty. All of a sudden those feelings of inadequacy and an embodiment of weakness and, if I’m honest, shame, tried to take over. What I found myself doing however, was concisely explaining my chronic illness in the space of about 15 seconds. If I do physical stuff, it makes me exhausted, and it is very hard to recover.
I spent my adolescence during the 90s feeling fearful of the attitudes of alpha males who had never heard of ME and seemed unable to access empathy. On this occasion, the tractor driver just acknowledged that it must be tough for me and wished me well while continuing back along the dusty track. I had pushed the shame away and won a minor victory in awareness.
A few days later, however, I did not overcome the shame. A young engineer in his twenties came to install superfast broadband via long-distance wifi from a house on the hill in the distance, which receives it’s broadband via another transmitter from the village on the opposite hill. Finally we’re a part of high speed civilisation and 4k streaming again! We realised we needed to move a sideboard to enable him to put in a new connecter in the living room. In a very short space of time I had to decide whether to call my wife from the kitchen to help and look feeble, or just help him move the thing two feet to the left. I failed the bravery test and weakly helped slide it along (I think the engineer probably did most of the work though!). This had been a particularly good day for me in terms of my energy levels, but the following week would not be, and I knew what I was doing to myself. I already spend about 80% of my time in bed, usually just leaving to go to the toilet or eat, so why would I exert that sort of energy knowing what it would do to me? I’m sure the broadband man would not have been bothered if I called someone to help but in that moment of foolhardiness I gave in to my perceived peer pressure and the shame of having to call for help.
Brene Brown is one of my favourite authors/speakers. She’s an expert on shame and vulnerability and has this to say about shame:
Shame is the most powerful, master emotion. It’s the fear that we’re not good enough.
Growing up with ME in my adolescence, I now realise this fear of not being good enough or attaining a high standard is something that I carried from that time. I wonder if it’s what drove me, after my significant recovery in my late teens to work so hard at university and gain a first class honours degree. These things bury their way inside us and we experience them popping up at tricky times.
So, living with ME, we not only have to deal with the rollercoaster of new and changing symptoms and swinging energy levels, we have to manage our response to shame triggers, to not matching up to our own expectations and the perceived, or very real expectations that others have for us. We have to make choices to be emotionally vulnerable.
A friend who has ME blogged for Severe ME week recently. She talked about the stark realities of living with severe ME and how it impacts her on a daily basis. I noted that she had been incredibly open about some really personal issues and that there’s a sense that we have no choice but to do so if we are going to raise awareness. We have to be authentic and vulnerable.
Brene Brown talks about how powerful this combination can be:
Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.
Of authenticity she says:
Authenticity is a collection of choices that we have to make every day. It’s about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen.
When I write a blog, I spend a lot of time thinking about my words, how I can best convey a message with clarity. Somehow it’s easier to be authentic and honest when time is on our hands and we can polish the final product. Yet every day life is not like that; when confronted with the requirement to physically exert ourselves we are faced with immediate decisions. We have to choose courage to be vulnerable and win a pacing victory or otherwise be aware that our physical health may suffer. This stuff is not easy. We can be fearful of how people will react, especially for those of us who live with an invisible illness.
Vulnerability is not about winning or losing. It’s having the courage to show up even when you can’t control the outcome.
As I’ve been considering this subject over recent weeks I’ve become more aware of how much my shame responses impact my physical illness. Not because of any perceived link between psychology and ME but because shame drives us to physically push ourselves beyond what is wise, risking an exertional aftershock of exhaustion.
For those of us trying to navigate the chronic illness landscape, may we be courageous in our vulnerability, bold in our weakness and authentic in our choices. We have to work hard just to stay afloat, we don’t need to allow shame to weigh us down further. This illness is very real, let’s not allow shame to lead us to push our bodies beyond what they can take.
Recently I’ve been enjoying new Dutch music. A friend has been introducing me to Dutch artists and then Spotify suggests more. It’s interesting how many write in English and often I think lyricists have to work harder when they’re writing in a second language, and sometimes I find songs which are more poetic and clever. One track in my twitter DM inbox is by the band Kensington and called Uncharted. The song was written after a member of the band lost someone close in a car crash, but could so easily be a reflection on living with chronic illness, which is why my friend sent me the link. It feels like an insight into the current global pandemic also.
No one knows just what to say
It’s like we’re in uncharted territory No one knows the proper way It’s like the ground has fallen from under me
I’ve been specifically thinking about life with ME and this idea of never really knowing what lies ahead. There’s no clearly defined path or course or treatment. There are no stats on the effectiveness of treatment or percentages for recovery as a treatment outcome because there’s no treatment for the condition, only sometimes the symptoms. And so each day we wake up not really knowing what sort of day it’s going to be or what small tasks we may or may not accomplish. There’s no precise GPS guidance or shipping route, or even a treacherous northwest passage, only small incremental stabs in the dark based on what others might have found helpful. We constantly have to adapt when our condition worsens and take extreme caution when it improves.
And all sensible words
All sensible hearts Oh, where do they go? And why do they leave us now?
And if I could go back again
I’ll go back again If the worst is happening How does anything work? Now let me please go back again I’ll go back again
For those of us with ME, the song points to a lack of basic empathy for so many who have been given damaging advice from medical professionals who often defer to guidance than really listen to the individual who’s in front of them. And then, we reflect on the mixture of emotions and bargaining that comes with the contrast of knowing the life we did lead and the seemingly non-life we’re faced with each day.
Recently on Twitter I mentioned how writing this blog helps me find meaning in life and I asked others what gave them meaning. Since becoming ill two years ago, when I’ve been able, I’ve spent time trying to make sense of this illness and how to exist with it. I’ve re-evaluated religious faith and how (and if) suffering fits within a complex Christian framework, I’ve learnt some philosophy and appreciated Buddhism and been intrigued by non-dual spirituality. On a practical level, I can attempt to manage the fatigue, try to eat the right things, experiment with medication which may alleviate symptoms, yet on an emotional, cognitive and existential level I have to find a foundation on which to build this alternative reality which life has thrown at me. It’s easy to conclude that maybe it’s best not to think about it because the grief can be overwhelming. However, I’m not sure repression is ever a good thing.
No one knows another way
It’s like all grace in life has parted from me
In discussing the matter of meaning on Twitter, I found such a range of responses in how individuals viewed their life limitations and whether they could find meaning despite the extreme challenges. Some found meaning in writing, art, family, pets. Others shared honestly that life is bleak and they really don’t find meaning in any part of their life. This really can be a hollow existence at times. I think it is important to recognise that for many within the chronic illness community it feels that life isn’t worth living unless a recognised treatment is found in the medium term. We’re all at different places and it’s important to hold space for each other, even if the conversation is difficult.
And if I could go back again
I’ll go back again (I’ll go back again, I’ll go back again).
The reality with ME and other incurable illnesses is that we simply can’t go back. I’ve often wondered how life would be if I hadn’t become ill on the 24th January 2018. In all honesty, I think my kids are happier and more settled and my wife and I have a better relationship because either one of us was often at work previously. Yet I’d still go back again in a heartbeat if it meant I could walk up a hill with my kids or stand in a busy bar with friends, or even just have a shower without having to lie down afterwards!
Recently I’ve struggled with my baseline dropping. There’s a threshold I seem to hit whereby I need a walking stick in the house. When I drop below this level my outlook and overall mood and positivity drops and it’s so much harder to find meaning as I’m someone who needs creativity in my life. It’s pretty hard to be creative when you can’t even lift your mobile phone, never mind your digital camera. When I move above this invisible relegation zone things start to give me joy again. The fog of exhaustion lifts just enough to see the water droplets on a leaf and meditate on the beauty found there. Vlad Vexler, in one of his recent video diaries said for him, it’s about something as simple as feeling the rain on his back. Those moments need to be savoured because we honestly don’t know when we might next have that experience.
A walk to an ancient Northumbrian hill fort with family on new year’s day 2018
Somehow, when we’re in uncharted territory, the baseline drops and we’re up a metaphorical creek without a paddle, we have to just hold on for dear life and wait.
May we wait with fortitude, that is, courage in pain and adversity. Stickability. If we can’t, that’s ok, but may we allow our chronic illness friends hold on to us with empathy until we can return the favour. Because on rare mornings when the fog lifts we can know that there’s something precious to be found in life itself. We can’t go back again and looking forward is sometimes too painful, so, as spiritual teacher Eckhart Tolle says, may we realize deeply that the present moment is all we ever have and that there is power in now.
I’ve spent the last six weeks with some strange form of writer’s block. I don’t know if it has just coincidentally been parallel to a global pandemic, or due to some debilitating levels of ME related exhaustion, or a combination of both. I’ve watched while chronic illness bloggers have produced some excellent content on how to manage isolation, or stressed how important it is that those who are healthy consider how those of us with chronic illness live each day. I’ve watched as comedian Miranda Hart has tweeted and spoken with passion about the difficulties faced by those of us who live a different way to those who go about their daily lives in the outside world. Meanwhile, I’ve been calling the fridge a prison and have felt my cognitive ability being sucked out of me. I used to write complex assessments and review reports as a professional, yet here I am, struggling to remember Miranda Hart’s name!
From all my symptoms and social challenges that come with living with ME, I think my poor brain processing and memory skills are somehow the hardest to deal with. I recently came out with “We could do with some of those sucky bags” to my wife when meaning ‘Vacuum bags’ to store our winter duvet. It’s like the opposite of the time I asked for ‘sparkling fanta’ in Mcdonalds because ‘Fizzy’ just wasn’t turning up for me that day and I felt like a right pretentious so and so! But here I am, writing again.
I feel compelled to write because it’s ME awareness month. There are so many things that I could say about the debilitating condition that has now taken about a quarter of my life in two separate chunks, yet the thing that has been on my mind over the last few days is the way that ME is stealing my future. A friend with ME tweeted recently that she’d had a good couple of days, and was suddenly planning ahead and even considering going back to work but as always, she acknowledged that the illness came back to bite and she was hit hard by a small amount of extra exertion.
This illness plays mind games with us. My energy levels have been swinging from one extreme to another within one day recently, so I can spend most of the day in bed in extreme exhaustion, yet pick up in the late afternoon and be able to do some tasks around the house before crashing again later in the evening. I’m still learning to pace but this is one of the greatest challenges of living with ME: as well as you know the condition, it will still trick you into a false sense of security and as such pacing your activity levels is so hard. When I have a better day, and I know I should be resting, it’s like I have this nervous energy where I can’t sit still. I know that this can be common among others.
So I was listening to the radio this week and a psychologist or someone of his ilk was talking about a new hashtag they had started on twitter: #lookingforward where people could tweet about the things they were looking forward to doing once restrictions are loosened in relation to the Coronavirus. The interviewee talked about the science behind positive psychology and how this was a great way of helping people to feel positive about themselves and to see the bigger picture. As a social worker, while talking to foster carers about challenges they would be having, I’d often try to help them step back and see the bigger picture, to look at how far they’ve come and focus on areas of work with a child to improve relationships going forwards. I loved the idea of solution-focused intervention: rather than dwelling on the challenges, we’d look at how we could get to where we wanted to be. Yet, with a condition like ME, there’s little in the way of solutions. I know I could eat more healthily, and try to pace my activity more effectively and remember to take my vitamin D, but these things are like trying to throw individual lumps of coal into a steam engine’s cold furnace and expecting it to get you to Doncaster. It’s not going to happen (unless you live in Doncaster of course, but I’m pretty sure nobody actually lives there).
So I think, along with my cognitive impairments, one of the hardest psychological challenges of living with ME is maintaining some modicum of hope. We can’t look forward to all the great things we’ll be able to do when the lockdown ends because very little will change. We can only half-plan for things, knowing there’s a good chance we’ll be unable to take part in whatever activity is planned. My son knows that when I was younger, I was ill for about seven years with ME. So he asks if I’ll get better after seven years this time. I tell him that it’s not quite like that, and secretly wonder to myself how long it will be. Is my future adult life somehow stretched out in front of me in a vast empty expanse, pottered with special moments of fun playing video games with my kids? Will I be able to take my daughter to uni in six years’ time (presuming she wants to go and there are still universities in 2026!?). Will I be at her graduation? Should one of my nephews get married in fifteen years time, will I be able to attend, and enjoy it? Could I get through my 96 year old Grandmother’s funeral should she sadly pass away in the next few months? I can feel the hard, straight-backed pews of the local village church and my torso wanting to crumple at the thought of it. Of course, these aren’t necessarily helpful trains of thought, but they are thoughts nonetheless and they’re real things that we will all consider from time to time.
So what of hope? Usually I like to end blogs with a silver lining. Almost every story written or movie made gives you at least a glimmer of hope, to keep you hooked. Yet it’s so incredibly tough to have any hope for your own health when you live with ME. And living with an empty hope can be exhausting. So I have little in the way to offer of hope. Yet maybe, rather than striving with some desire for a better future which may not come, we can simply choose not to despair and live in a neutral space which enables a better standard of mental health.
Maybe the wizard Gandalf in Lord of the Rings puts it well when he says…
“It is not despair, for despair is only for those who see the end beyond all doubt. We do not.”
So I cast aside hope for now. But I also cast aside despair and choose to live each day as it arrives and seek out peace in moments where I can find it.
Gaslighting is a word we hear a lot about these days. Diminishing another’s experience, making them question their reality, causing cognitive dissonance and redefining language. We talk about medical gaslighting a lot within the chronic illness community when medical professionals undermine symptoms, minimise what we’re going through or simply choose not to listen as they’ve already made their conclusions. For me, it seems to come down to a lack of empathy. In wider society we hear about gaslighting in relation to #metoo, harassment and sexual abuse.
In my social work career during training I learnt about how effectively this is used by an abuser to make the victim question their reality. It’s only more recently we’ve had a word to encapsulate the mechanism used and the lived experience. Gaslighting seems to come on a spectrum. It’s an effective tool for the abuser, the term comes from a 1938 stage production and later 1994 psychological movie called Gaslight whereby a husband frequently dimmed a gaslamp to confuse and manipulate his wife, saying it hadn’t happened. However, I think it can come through damaging forms of leadership in a wider societal form through group think and subset social norms where ideas are cascaded and unwittingly, individuals may not be aware that they are gaslighting others. High control religion is a good example where individuals will take a world view from the stage and lead others to question their experience of reality and personal understanding when they step beyond approved doctrine.
Having been attending therapy, either in person or more latterly via Skype over the last 18 months, I’ve realised that I have needed to explore my adolescent years and come to terms with seven years of ME, or Chronic Fatigue Syndrome as its sometimes known, between the ages of ten and seventeen (I recovered for twenty years before becoming ill again in 2018). Some psychological language can sound rather silly and talk of an inner child almost creepy but there’s something powerful in the analogy. I have had to revisit my eleven or fourteen, or sixteen year old self and try to grasp what he was going through. I’ve also had to consider how my adult self, pre-ME, viewed that chubby, curtain-hair clad, chirpy Northern boy.
My teenage experiences definitely impacted on my life choices, I chose to become a social worker out of a wider desire to, at some point, make a difference for chronically ill and disabled young people, and to some extent I achieved this. As a supervising social worker in fostering I stepped into a role overseeing a scheme to support carers who were looking after children with disabilities and in another job I worked as a senior practitioner for a local authority’s short break scheme, where disabled children had time away from home for a few hours, or overnight with specialist foster carers. So yay me, I was able to turn my awful childhood illness and lack of substantial education for six years into something that benefited others.
However as time went on and I became more distant from that young lad, did I start to lose empathy for him? Was I so busy with family and work and other endeavours that the mountains of paperwork obscured my ability to see where I’d come from? Did I start to judge parents of children who used our service or assess their experiences against those of others? In a way, yes, because it was my job to do so. We had to make sure children were safe and that takes judgement. It also takes judgement to make hard decisions on access to services based on limited resources and eligibility criteria. Yet, somehow, I think when you are process driven you can lose sight of the human element. I don’t think anyone would say I overtly did this, but sometimes that ability to see a person in their true humanity can become shrouded behind forms and process.
I think sometimes I would look back at my own younger experience and think, ‘It wasn’t that bad’.
I think sometimes I would look back at my own younger experience and think, ‘It wasn’t that bad’. My seven years of ME, characterised by positive spells and then massive relapses had been nicely boxed up and stored away. My life with ME, or selective memories of it could be edited down to a sixty minute documentary if needed. That was another life. Now I had reports to write, panels to attend and auditing to do. Not to mention get my daughter to the swimming pool or Brownies! Did I gaslight my former self, my inner child? I’m not sure gaslight is the right word because I’m not time travelling but I think I did negate his experiences.
Last year when skyping with a group of men with ME, we talked briefly about those rare few who recover and how they don’t like to revisit their time with ME. Anecdotally they often don’t seem to campaign for funding, awareness or greater understanding, when ideally they’re best placed to do that. Someone suggested that it’s almost a bodily and psychological defense mechanism to allow themselves to move on because the reality of what they went through is too traumatic to face. Maybe over time you just forget and move on. Maybe the forgetting is about managing the grief of lost years. I don’t think I liked to look back. Maybe there was always a tiny part of me that feared it would return. Those fears proved to be correct but you can’t live out of fear.
I think true empathy is most effectively expressed when an individual has lived recent experience of a situation: we’re honestly able to put ourselves in another’s shoes because we’ve walked in them and felt the pain. That pain eases over time and empathy is borne instead out of memory instead of embodiment. Maybe eventually it’s just a memory of a memory. Empathy takes conscious effort and self awareness and doesn’t necessarily require you to have lived experience of someone else’s situation. We have seen recently how many have demonstrated a complete lack of empathy through bulk purchasing of essential items in the wake of Coronavirus fears, or statements over the virus ‘only’ affecting the old and vulnerable.
There’s a lack of ability to reflect and wonder ‘what if I came to the shop and there was no hand wash?’.
I think empathy is my favourite word. It’s a powerful thing and can make a huge impact when we’re able to stop and reflect and place ourselves in another’s shoes. Recently when I was a mess on the floor having collapsed from exhaustion I found myself apologising to my younger ME self, my inner child who was gaslit left right and centre by medical and education professionals and members of my wider family.
“It was this bad, and I’m sorry for what you went through”.
It was a bit weird but it was an important thing to do. I think it released trauma I wasn’t even aware of, acknowledging the grief of lost years.
I think, living with a chronic illness we can all gaslight ourselves sometimes. We have a good couple of days and all of a sudden we’re wondering what all the fuss was about and making plans for the future, “it’s not that bad”… until we’re hit with the usual exhaustion aftershock a day or two later. So these mind games are tricky to navigate and we have to step back and acknowledge the reality of the bigger picture. It’s only through real self awareness and acceptance that we can balance all these thought processes and frustrations.
Writing about gaslighting and empathy in the same blog seems like an odd combination but I think sometimes gaslighting occurs out of a fear of the unknown, or of difference. We don’t like to admit that we’re not in control so fear is manifested and projected onto others. When we try to actually see someone for who they are and utilise empathy, maybe the need to gaslight others reduces, but self awareness is vital.
While we see an actual example of empathylessness (that’s surely not a word) playing out in the shops and online, may we be those who express empathy towards ourselves and others.