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.
It was my wife’s 40th birthday party last weekend. I’d spent most of the previous week in bed, partly because I was trying to minimise my energy output so that I was in a good place to go, and partly because I didn’t have any energy to do otherwise!
This was the first time out in the evening for me past 8pm for a very long time. I soon realised that I was running on adrenalin. After half an hour of trying to converse with old friends against the DJ, who had already been asked to turn it down, and my words coming out slowly, I retreated to the car with my pint of cider in hand. As I escaped inside my noise cancelling headphones I could feel my heart thumping in my chest. This was not good. I did enter the fray again to hear a dear friend play his guitar and sing a song he’d written especially for the occasion, and to eat some good food. I seemed to acclimatise a bit but the environment still felt like a head-spinning torture of sensory overload. Instead I spent time in the foyer of the rugby club sitting on the stairs and people joined me to chat on the way to the toilet!
The ‘Post Exertional Malaise’ or ‘Post Exertional Neurological Exhaustion’ is still hitting hard and I’ve hardly left my bed since the party three days ago. However, my wife was so pleased I was there as so often she has been out with the kids and felt sad that we’re not able to do things as a family. There was no way I’d miss her 40th. We’ve been together for twenty years this year!
There are two big takeaways for me from this experience:
1) A little bit of grief at how far away I am from being able to go to a gig and enjoy live music in a busy venue.
2) How hard it is to be a people person when you can’t really be a people person.
Point one is what it is. I can only hope that I can work back to being able to at least go to an acoustic set in a quiet venue one evening.
Point two has deeper, more profound implications. I’ve often heard it said anecdotally that most people with ME tend to have been active, outgoing individuals before they became ill. I have no idea whether this is statistically true or just a bit of a myth. However, I must have decided to go into social work as it suited my character and desire to help and interact with others to bring about positive social change. I spent seven years of my adolescence with ME before recovering, so I got used to spending time alone. I can hack it because I had to, and those years were probably good preparation for being able to deal with the isolation over twenty years later as an adult with ME. Don’t get me wrong, I have my wife and kids and my parents close by and I know so many heroes with chronic illness who may not interact with anyone in person for days or weeks, so I’m fortunate. Yet, I love engaging with people, hearing their stories and walking with them, both physically and metaphorically! It feels so hard not being able to relate in a truly meaningful way without the risk of repercussions to one’s health.
In rural Northumberland we have some of the best skies for star gazing and I was recently sat outside in the cold just looking at the stars and thinking how wasted my skills were. Not in any proud or arrogant way, or even in profound grief this time, but almost in a detached, pragmatic way. I ploughed 18 years into building a career and skill base. I hope I was always looking to improve at what I did, and increase my knowledge, communication skills and learning. I’ve always been passionate about supporting foster carers to be the best they could be in helping the kids in their care and I feel that I was quite good at it. If I’m struggling to even find the words at a party to tell someone about some carpet the fitters laid in the spare bedroom, how could I possibly competently do the things necessary to be a paid professional in a complex role? The reality of that career loss hits home. It’s a quieter and calmer sort of sadness now though: just a recognition that the universe is missing my contribution.
So what if you’re really a people person but this living hell has given you the worst job ever: caring for your own body on a lone working basis?
I don’t really have any 12 point list or snappy catchphrase. “Be the change you want to see” feels contrived in these circumstances because just getting to the toilet can be an achievement for many of us, so making efforts to build community takes energy we often just don’t have. On Maslow’s hierarchy of needs, a psychological model used in teaching most caring professions, it’s acknowledged that an individual’s basic needs have to be met before they can start to truly consider any meaningful purpose-led activity, or reach the top tier of ‘self actualisation.’ For example, on a basic level this helps explain why children cannot learn effectively without having eaten breakfast! When living with ME, we have to cheat the model: scrape the energy barrel and find a way to ensure our basic needs for food, warmth and shelter are met, while also finding meaning in something.
For me, Twitter has been massive in helping to develop friendships and stem the isolation. It feels like a different beast to Facebook as my online communities are so different. I feel like Twitter is where I find my chronic illness tribe who just understand, while Facebook is full of people who appear to be moving on with their lives: holiday snaps and family outings.
One thing Facebook is great for is groups. I’m part of a few non-ME related groups for specific interests. While these relationships are far flung, I do find these online friendships are really important to me now. Last night I took part in a video conference call with about eight others. We had a shared interest and although I was in bed, I felt able to engage in a meaningful way without all the exertion of going out of the house. It was a great time and made such a difference to my psyche. I’m wondering if there’s a way we can bring these group video calls into our wonderful ME community.
Beyond utilising online services to develop relationships, for me, life is about dealing with the emotional frustration of being dumped out of society by this illness.
Prolific blogger Jo Moss recently wrote an excellent piece about self-care which is definitely worth checking out. For me, meditation is really helpful. I know I bang on about it, but If I can come to a place of contentment, acknowledging my grief and exhaustion and metaphorically letting go of it, then I find I’m in a much better place to interact joyfully with my wife and kids at the end of the day. A few months ago I drew the words Be Here Now and got it framed. I’m no artist but it hangs in our kitchen as a reminder, not only of Ram Das, the recently deceased guru who popularised the phrase, but to remain present, to focus on the relationships I do have and can manage, and so as not to strive for something which is out of reach.
Reframing negative thought pathways can also be helpful. Rather than regret my lost career, I can be grateful for the career I have had and hope that my work made a lasting difference to some of those children and young people I worked with. If I matched even one child with some foster carers I’d assessed, who made a profound lasting impact on the child’s life, then maybe the whole thing was worth it. Some days the grief enters and it’s not as simple as just thinking positively, as sometimes it’s all encompassing and far beyond just making a choice. Maybe then, we don’t have a choice as to how we feel on some days, but perhaps we do get a choice as to how we respond to those feelings.
Finally, one thing I love to do is be an encourager. If I see someone post on twitter that they’re struggling and no one else has commented in the last hour, I jump in there with a comment or funny gif. Sometimes it’s hard to motivate ourselves to encourage others when we’re in a tough place but I think it helps to develop a positive culture and its good for us!
The reality is, being a people person when we cannot be is tough. Conversation can be acutely exhausting but it’s also something we need for human flourishing. We need each other because deep down most of us need relationship. My hope is that we’re able to creatively find ways to continue to build community when the odds are stacked so heavily against us.
As I write this, fires are spreading quickly across numerous states all over Australia. Those living near a spreading fire are doing what they can to protect their homes and remove valuables, not knowing what the next few hours bring. Ultimately the raging inferno decides what happens, and of course, the climate, as people can only hope for rain. My phone tells me that the forecast for here in the North East of England is rain.
My uncle has been a dairy farmer in New South Wales, Australia for over forty years. He recently sold his herd because water to keep them hydrated and irrigate the land was just too expensive.
These issues make us realise how fragile our existence really is and how our lives are dependent on so many outside factors. A bitter political war has been fought here in the UK over recent months leading up to a general election, and in recent years, as Brexit has continued to distract from important domestic issues. It’s like the whole nation has been living in a state of perpetual ambiguity. Will the rain fall any time soon? No one really knows.
Like with the weather and politics, living with a chronic illness means we are in a constant state of not knowing what tomorrow brings. For many, new year is a time of looking back, and then looking forward. What bright future will the year ahead hold? For some of us, these questions are too painful to even ask of ourselves. One of my favourite songs of all time is by the band Counting Crows. ‘A Long December’ is a song I’ve listened to at the end of December probably every year for the last twenty years.
I can’t remember all the times I tried to tell myself to hold on to these moments as they pass. A Long December and there’s reason to believe maybe this year will be better than the last… The smell of hospitals in the winter and the feeling that its all a lot of Oysters and no pearls. Its so long since I’ve seen the ocean, I guess I should.
We could reasonably ask ourselves if there are any reasons to really believe next year will be better. The political climate spells a bleak future for those of us with chronic illness and disability. For those of us with ME, it can feel like there hasn’t been much progress with doctors and other medical professionals in understanding and empathising with our situations. Twitter hashtags over the past year, such as #DoctorsAreD*ckheads and other online initiatives, while sometimes a little crude, have highlighted how marginalised many of us are made to feel.
Some in the mind/body crusade may say that it’s all about attitude and positive thinking. If we have a positive outlook then there’s an improved chance that 2020 will be a better year than 2019. Targets, lists and resolutions all hold little water though when you come to learn that knowledge of reality isn’t negativity but actually just cold hard survivalist pragmatism. But then we can quite easily slip from reality into a negative headspace if we’re not careful. I know I can.
As I write this, I look out onto the front field of the farm where I grew up. The sun is shining on the dewy grass as a pheasant preens herself. The same sunlight hits the poinsettia on the window sill and lights up its greens and reds. I can’t help but be inspired. These days can be long and we can easily slip into despair, but right now I’m just thankful for the warm sunlight on my chest. It feels like a while since the sun shone. For me, this mindfullness and medatative approach to life is what keeps me going. I remember how fortunate I am to be alive and try to employ gratitude. Taking time to focus on my breath and visualise breathing in light while breathing out those dark and negative thought processes can bring me to a more peaceful place. If this all sounds like woo to you and not your thing, that’s fine. Each of us can develop our own way to find the inner peace that we need. So really, we cannot know what the future brings, and there’s little point of trying to figure it all out. This moment is all we really have anyway. Eckhart Tolle talks about ‘The Power of Now’… If we remain solidly in the present then maybe we don’t have to measure last year with the one before, or set expectations for the year ahead. We can take each moment as it comes.
New Year can be huge for us in experiencing grief we weren’t expecting. It can remind us of what we’ve lost and what we might miss out on going forward. There’s a new anxiety-laden phrase that’s popular these days in the ‘fear of missing out’ or FOMO. Many people’s lives are self-assessed by the outward identity of who they’re with or what they’re seen to be doing. Over the past year I’ve learned to find peace in the present moment. I still avoid facebook at times for the grief it can trigger in seeing families climbing hills or hitting the beach together, and I still feel frustrated by all I’ve lost but experiencing the power of now finds me like an anchor. Maybe at least I can be that anchor for my wife and kids, unswayed by yesterday, or what tomorrow brings. Unswayed by the ambiguity.
I hope you continue to find your own ways of dealing with the ambiguity of the future and experience peace in your present moment. May you be surprised by the sun through your window this week.
This morning I attended my son’s school Christmas production ‘Lights, Camel, Action!’
There were around one hundred kids and eighty or more parents and family members squidged into the little village school hall. The heat, the hubbub, the crying baby (It wasn’t Jesus). If you live with a chronic illness I can imagine you imagining this scenario. In come the tiny four year old angels for their amazing rendition of Twinkle Twinkle. Its quintessential Christmas… Something that can’t be bought or bottled. I didn’t come for that though, I came to see my son as a wise man doing a funky camel dance (whatever happened to the sanctity of the classic Nativity eh?)
I’d pushed myself hard to be there after tremors and restless legs kept me awake until sometime after two AM last night and I’d been out the Sunday afternoon before for my only social gathering of the season. This school event was important for me though as my son leaves first school at the end of this year, and my daughter already had her final Nativity two years ago. So it’s the end of an era, the last Nativity.
Through the various segments of line dancing by Nazareans and Ballet by angels we went, all being judged, ‘strictly style’ by an innkeeper’s wife, a cow and a donkey. One of the children held up a huge board encouraging the audience to cheer the acts, or boo the final judge, Caesar, for ordering a census. It was all wonderful and really enjoyable. The kids put so much effort in, especially Mary and Joseph who sang a duet together. Then came my son’s funky camel dance. I’d spent the previous twenty minutes feeling like I was crumpling inside. Do you ever have that experience of being detached from yourself, like you’re computing reality through a lens attached to a 1990s pentium processor? Or watching on a giant screen? Yet seeing this hilarious camel dance was so worth it. My son nailed it, especially the John Travolta dance fever move. The show moved on. More clapping, another baby behind me crying, the heat rising.
I had a decision to make. Do I endure the rest of this, including the raffle at the end, knowing that every minute in the place was exhausting me further or do I just get up and walk out? Thankfully I was close to the door. The next time the ‘cheer’ board went up, I made my move. Like a ninja with a walking stick, I kept my head low and dived for the door. Great, I was out of the hall. Next I had to leave the building and finally out of the gates. Thankfully I didn’t set any alarms off and before I knew it I was sat in the car. What made things worse was the fact that I’d totally not had breakfast before I left! I never functioned well without breakfast even before ME. It had been one of those mornings. My evacuation was complete though and I’m now back in bed.
Sometimes I have those weird moments where I wonder how it came to this, not being able to survive a school Nativity. Rather then feel down about it though, I feel really proud of myself, that I put my health above my pride. For me it took guts to walk out of a Nativity, but I saw my son as a rather unconventional wise man and for that I’m so pleased.
I feel like someone reading this needs to know, it’s Ok to walk out of something when you need, it’s OK to look a bit unusual, it’s OK to quit while you’re ahead, it’s OK to let go of other people’s expectations of you, it’s OK to let go of your own expectations of yourself.
Recently I went to a retail park discount shop but forgot my walking stick. They were selling plastic chairs for 6 quid at the entrance. I put one in the trolley and sat down on it three times around the shop and then at the queue for the tills. I would have felt so awkward doing something like that a year ago. I knew I was getting some funny looks but it was either that or risking my legs going to jelly or choosing to not even enter the shop once I realised I didn’t have my stick.
These oddities are all moments on the road to self acceptance and more effective management of ME.
If you need to leave a social event or family gathering early this Christmas, just do it. If you need to send apologies because you know if you do go the repercussions might last months, then please know, you have permission to not go. You have permission to do whatever you need to do to get through Christmas unscathed.
I’ve previously blogged briefly about my own traumatic experiences as a hospital in-patient as an 11 year old following diagnosis of M.E. It was the early 90s then and I only received an ME diagnosis because my parents read an article in the local newspaper about a footballer who had developed ME and then, supported by our wonderful, rural family GP, took me privately to see a specialist 40 miles away. Some months later and following a decline in my health I found myself admitted to a children’s ward. A psychiatrist had me lifting medicine balls and pedalling hard on an exercise bike. I’d been there a week but my parents decided enough was enough, that this treatment was damaging me and so signed a discharge form and walked me out of there. The psychiatrist wrote later in notes (which my mum demanded to see) that I was a ‘school refuser’. He never spoke to my school to gain feedback about how much I enjoyed school and engaged in my learning. A term previous to becoming ill I’d been to France on a school trip and raced my friends up the Eiffel tower.
I count myself fortunate that a social worker never came knocking. Many others found themselves amidst child protection procedures and parents accused of fabricated illness (previously known as munchausen’s by proxy). Some still do. While my seven year stretch of adolescent ME didn’t become severe like Jessica’s (although I did miss five years of school), I knew that reading Jessica’s book would drag up some distant memories. I’d wanted to read it, I just wasn’t sure I was ready.
A girl Behind Dark Glasses creatively tells the story of
Jessica Taylor-Bearman’s life between the ages of 14 and 19, whereby her severe
M.E. invaded every part of her existence and hauled her to three hospitals for
long term stays as she was too ill to live at home. The journey through those
years feels excruciating as Jessica narrates one medical emergency after
another as her body progressively shut down on her. Use of diary entries
narrated to her mum and on her electronic Dictaphone add colour to the memoir
but it’s Jessica’s skillful weaving of her own story which made this such a
page turner of a book. I felt like I was on the hospital wards, as a witness,
intruding on some incredibly personal moments. However, Jessica asserts that
her story must be told and she gives us permission to see her at her most
vulnerable. She declares from the pages that we must see her, we must hear her
I read this book over two days and I’m still processing it. It was an unusual
experience for me, as there was much I could identify with in Jessica’s book.
I’m 10 years older than the author, but looking back, I also had the same
irrepressible hope that I would recover, or at least that one day things would
be different. Things would be better. Maybe it was the ideal of youth. Jessica
writes that she wanted to scream at professionals that she wasn’t depressed. I
also felt that I had to persuade every doctor, tutor and education psychologist
I came across that I wasn’t depressed. Yes, I got ‘down’ some days, but never
depressed. See me. Hear me.
So I come to the second lens through which I read Jessica’s
book: that of being a social worker with 11 years of experience behind me.
While I ached in solidarity as a fellow ME body, it was my social worker self
who was on the verge of tears, my social worker self who was silently shouting
‘No, No, No!’ at the book. A Girl Behind Dark Glasses is about Jessica’s
journey but it’s also ultimately telling a meta narrative about the dire need
for person centred care and compassion in our health and social care services.
While I was sitting in university lectures and learning about evidence based
practice, social models of disability and holistic solution focussed
intervention in 2006, Jessica was being subjected to some of the most inhumane
treatment possible. The author tells of her experiences in a slightly
off-kilter comic way via the creative names ascribed to her captors, sorry,
carers. Some of the various workers on the ward remind me of characters from
one of my daughter’s favourite books ‘The midnight gang’ by David Walliams, where
a young group of hospital in-patients get up to a lot of mischief during the
night by evading their lazy and sadistic nurse. Except, Jessica’s experiences
were all too real and she paints a picture of staff who were ego driven, just
did not care, or sought to actively harm her. Jessica was blamed for her own
lack of progress. As I read, I had to remind myself that what I was reading
happened in the mid naughties, not the seventies or eighties. The contrast
between the staff and atmosphere of the second, abusive, hospital and the
third, caring hospital couldn’t have been starker. With my social work hat on I
couldn’t help but note some of the important themes for professionals to
consider when caring for vulnerable and severely ill and non-verbal young
How do we work to establish competency of young
people, to enable them to make decisions for themselves when they have
difficulty communicating? (Are they Frazer competent?)
How hard are we trying to genuinely communicate
with young people who cannot do so through usual means? How can we be creative
in establishing a young person’s needs, wishes and feelings?
How do we demonstrate true person centred care
which places the young person as the co-author of their care plan?
How do we challenge established cultures of
respect and hierarchy whereby it is presumed that doctors always know best,
when really there needs to be genuine partnership approach to care and openness
Can we admit that sometimes we don’t know,
taking a holistic and cautious approach to care rather than a plan of action
which could cause harm?
How can we convey difficult news clearly to young
people and ensure they understand the information?
Are we willing to take the time to notice very
subtle changes in a non-verbal young person which may indicate they are subject
Are parents and siblings utilised as part of the
circle around the child or young person to meet their emotional needs? If not,
why not? Are the reasons documented?
Are we demonstrating compassion, unconditional positive
regard and ensuring that we’re doing everything possible to avoid de-humanising
a young person?
Really, this stuff isn’t complicated. While cultural norms
of apathy and institutionalisation of staff within caring frameworks can become
entrenched, it doesn’t mean that change cannot and shouldn’t be a priority.
Jessica has every right to be angry about her experiences, yet throughout the
book she draws the focus away from the terrible thing that she’s just shared,
to the possibility of a brighter future. The word that consistently came to
mind whilst I read this unique book was ‘fortitude’. It’s a really old
fashioned-sounding word which was a criteria by which I used to have to review
foster carer’s progress. Did they demonstrate fortitude? That is, ‘courage in
pain or adversity’. Jessica showed with humility and warmth that she has
fortitude by the bucket load.
This book may make painful reading for some who are still working through
memories of childhood trauma, however I believe it is essential reading for
every professional who works with the most vulnerable children and young people
in society. Hopefully it will be an important part of a process of personal
reflection for many and a further tool for challenging ableism. There is still
a long way to go.
[A few months ago my Dad and I were on the way to an event
and we drove past the site where I’d been in hospital when I was 11. I hadn’t
been up that road for a decade or more. Most of the hospital has been knocked
down and the rest appeared to be being used as office space. I felt strangely
satisfied about this. These symbolic moments are sometimes helpful for us in
putting the past to bed. Have you had similar moments which have helped you to
move on from difficult childhood experiences? Feel free to share in the