As we edged ever closer to lockdown, I noticed how notably little my life was changing compared to everyone around me. I spoke to Nick Parker yesterday, who's self-isolating while living beyond the odds of a cancer diagnosis. We both noticed that perhaps the upheaval in our own lives in recent years had somehow prepared us for this.
On the first day of 2016 a virus that developed into ME/CFS turned my world upside down. I was often confined to my bed, sofa and house as weeks lapsed into months and eventually years. I was forced to let go of my career as my social life and much else I used to enjoy slipped away. As my mobility improved, my physio set a daily walking limit of 20 mins a day to stabilise my activity levels. At first, I felt as if I was under house arrest. Over time, I understood that limiting my activity was actually getting me closer to walking further again. And it did.
If you are self-isolating (and I know how lucky we are to be even talking about this given the reality of Coronavirus out there), this is what my experience taught me that might be helpful right now.
You are a highly adaptable and resourceful human
It's biology, even if you don't 'feel it'. You will adjust. You will start developing new habits and values that you will take with you long after all this is over. When every spoonful of energy my body possessed was rationed, I was forced to take on my grandfather's military preoccupation with the 'laws of time and motion'. And I've noticed how efficient that has made me now my functioning has returned. I had to transform being able to ask for help. I went from struggling to ask someone to carry my bag up some steps to being able to ask strangers to carry my backpack around the entire world for me. You are creative and inventive and more capable of finding solutions than you know. You have probably already adapted far more than you have even realised.
Connecting with family, friends (and strangers too) will be your life raft
In the end this was most of what life boiled down to for me. Being chronically ill is incredibly isolating and I survived because of my family. Some old friends slipped away, lost in their own busyness, others showed themselves in iridescent colours. My guitarist Maitreya and I would send each other long recorded monologues... it meant I could speak to him any time I needed to while he was in the studio... "I'm lying on the floor and I can't move....", He would press record to chat while he drove home. Now as I listen back to copies of our recorded 'letters', they show me how far we've both come.
Today I am watching people becoming paradoxically more connected than ever, despite the physical distance. I much prefer Esther Perel's description of 'cocooning' rather than self-isolating. We are nesting and keeping safe. We are not hostages. Some of us are longing for solitude - we have no choice but to make our relationships 'work', to get through this experience saner, healthier and with friendships intact. While there will be some very real exceptions to this, if you are getting through this on your own, the likelihood is that you are not actually alone.
Your sense of time will drift
Lockdown may feel like a new kind of forever. We regress into a new feeling of eternity in situations like these, and it can be deeply disquieting. Once the initial shock and confusion subsides, time can start to pass frighteningly quickly. Without the demarcation of location, one week can race into another, perhaps leaving you wondering what you've really achieved. The uncertainty can leave us feeling somehow adrift, lost or even sinking. All I would tell the version of myself that lived what felt like day after day on the square distance of a blanket on the floor of her flat four years ago, is that things will change. You will find a way through - one moment at a time it will be given to you - until one day, you will be looking back at this experience and finding something in it that was worthwhile.
Routine and discipline will get you through
Even if it's only one practice, do it every day. Mark some key actions to do at a certain time and stick to them. Find structure where you can, even when it feels almost unbearable. Do it kindly. Keep doing what needs doing. Be realistic about your expectations. Meditating was nearly impossible during the early stages of ME/CFS, until I found the most basic guided practice that I could build on as my mental state improved. I'm currently starting my day with Wim Hoff's breathing and now my parents are too.
Many of us are living through a certain amount of anxiety and anticipatory grief, even if it only sneaks up on you occasionally when you thought you were coping perfectly well. But you can control most of your behaviour, you can choose what you make this time mean and you can choose your response. And the power lies in simple, repeated actions.
Let yourself grieve the losses
Whole aspects of your life might fall away from you... hopefully for now it's only for a time. Dance classes, football practice, festivals, meetings, book groups... whatever it is that made you 'you'. And you might have other losses. A business, a career. There isn't a quick answer - the fact that I still physically struggle to sing in public after 20 years of near constant performing before illness hit still gets to me sometimes. But the grief has subsided. And I have been given so much in return; a completely different appreciation for who I am and what really matters. I have no interest in wallowing but you have to let yourself feel it. And mourn who you used to be and the world you knew, before a new self can emerge.
You might find a new comfort in the ordinary and the domestic
As I let my old self, and the existence I knew fall away (I loved much of my London life - I was dragged away from it pretty much kicking and screaming) I started to find a new contentment in the profoundly ordinary.
It took years to get over the struggle of trying to do every day tasks. I'd sometimes need 2 hours rest from getting dressed. Eventually I found comfort in the moments that would have left my pre-chronic illness self bored out of my mind. Maybe that was the point. I had to do everything so slowly. I would sit and stare into space, study the birds, feel the water drip down my arm as I methodically washed up. I found a new appreciation for the everyday that I hope I have never lost. And that has been more pronounced in recent weeks.
Right now it can feel laborious too; the endless hand washing, constantly thinking through what you've touched on a walk.... But all of this can help drag us, however reluctantly back into the moment, until the beauty of it might even sneak up on you too.
Don't put too much pressure on yourself
If you're not being your greatest or most productive self right now that's OK. You are surviving. Perhaps you are the reason your whole family is surviving. Rest if you can, when you need to. Wake up a bit later if you need to. Give your body what it needs. Ask for what you need. Prioritise your immune and nervous systems. Dance the dance between determination and self-compassion because there are times when being determined and single-minded is the kindest thing you can do for yourself (the thing that gets you out of bed in the mornings), in other moments it definitely isn't. Experiment with the wisdom to know the difference. Try it and see where you end up.
There is so much more to us then what we 'do'
It took all my 'doing' to be taken away from me to really understand this, and I still forget all the time. That what I 'do' out in the world doesn't matter half as much as the way I do things. That and who and how I love. I used to be something of a high achiever and that's far from a priority any more. It's not that I've let go of ambition, it's more that... I've already won a one in 400 trillion ticket to life as a human on planet earth. Being able to walk whenever I feel like it is a great start. If you're responsible for anything it's to make sure you don't get so wrapped up in yourself and attempting to prove that your existence is worth something that you forget to join the party.
Coming out of this will be just as, if not more challenging as getting in
Accepting a new reality of lockdown is one thing. Recovery and reentry is rarely straight forward. Even with a full recovery, my life will never be the same after CFS/ME. I very much doubt somebody will press a button and life will immediately return to 'normal' for us all after Covid 19 either. I kept giving myself 6 months to get back to full health - perhaps that felt both reassuringly close and realistically distant enough for my nervous system to cope with.
In many ways I hope we never return to business as usual. To a world that constantly leaves the lights on, prioritises productivity above all else and has forgotten that life is cyclical. We're going to have to 'dance' our way out of this too. It can be difficult to get a taste of what you've been so desperately missing and then restrict your activity levels again. It may be that we see multiple lockdowns that vary in length until this is really over. But one day lockdown will be over. We will come out of this with losses, and we will come out stronger too. But what we make of this time is up to us.
It’s the last day of 2019. I've been lent a friend's London flat for New Year. I’ve just jumped onto an overground heading West to Highbury for a last coffee with my brother before he flies back to New York. I’m enjoying how good I'm feeling today. Slightly more energy moving through my system. A few lose plans for the evening but nothing definite. Perhaps it’s old habits; London can bring a return of the speediness I used to live by... but like a reflex I'm opening up Facebook in a brief moment between stops.
And there it is.
"Jessica, we care about your memories on Facebook...we thought you'd like to look back on this post from 4 years ago..."
I had completely forgotten. It was 4 years ago to the day my life changed. I was surfing in southern India, and as I paddled out to catch the waves, my body stopped behaving normally. I struggled to move my arms, as if something in me had snapped broken and my cells were cutting out. I somehow carried my surfboard up the steep cliff side path and collapsed. I woke up the next morning with the virus that turned into ME/CFS. That was the last morning my body had any real power.
I realise how for those who live with chronic illnesses, the grief never completely goes away. It can knock you sideways at any time. There is a sense of bereavement for the life you used to know. And the anniversaries can ambush you just as this one did.
The day improved. I said a proper goodbye to my brother. And ended up spontaneously heading to an event last minute at a yoga centre in Camden, bumping into some important people from my past life. It was perfect... there was nowhere to sit down in the packed hall and as I moved towards one of the few remaining empty cushions on the floor, there was Claudina, who used to perform with me. It was a special and uncanny afternoon.
I made it home. Despite three different invites, including something low key around the corner, by the evening my legs weren't taking me anywhere. No more juice. The bells chimed midnight as I had a little weep from my bed on my own. A few important messages. It wasn't so much that I was in my pyjamas while it felt the whole world was partying or that I was alone, as much as how much that freshly-forgotten-about anniversary had shaken me.
If you know anyone with a chronic condition, even if they don't know it yet themselves, it's likely that they are living with at least a small amount of grief.
I've been very quiet with blogging.... because it's all going into keeping up with a Post Grad year in Psychodynamic Studies at Oxford. The first year of training to become a qualified therapist if I decide to. So far, the most valuable thing about this year is the other students and a small experiential group on Wednesday evenings. I feel as if I don't know anything. I'm so lucky I can do this. I have challenges with concentration and getting through academic work... but the point is I am getting through. And it has transformed my mental health having this to focus on and move life forwards. I've just handed in an assignment in time. Physically I had a challenging time in September and my body has been steadily avoiding any crashes so far.
These beautiful wheels made Glastonbury 2019 possible for me. And this year has shown me how differently I think about disability now.
When you see this photo, or read this, I don't want to think for a moment that I'm anything except remarkably, resoundingly better. I'm so much better in fact, that I've walked 10K two weekends in a row and have been completely fine afterwards, even if I might not be able to get to the pub the same night. In many ways I'm now probably far more ‘well’ than many people.
Equally, as it turns out, I wouldn't have safely managed a day at Glastonbury Festival without mobility assistance this year. Welcome to my fluctuating world. And life in recovery from an invisible neuroimmune condition.
I was hoping I could get away without wheels and nearly didn't have a scooter booked at all for the busiest days which had sold out. I had had a few physical dips in the run up to Glastonbury including my first small crash in 10 months. Luckily there was a last minute cancellation for the whole five days because as it turns out, my body found the whole week really challenging.
I'm part of a project called Replay, run by volunteers, that teaches children music. I work with a family of musicians, including my brother Bernard who lives in New York and had flown in especially to join us. We teach for roughly half-day shifts in 2 large open tents, one strewn with small guitars, ukes, violins and cellos and another next door filled with electronic drum-kits, keyboards and electric guitars (and lots of headphones). Along with the rest of the crew, I teach guitar and uke and often end up helping the children write songs. We sometimes take them into a fully equipped mobile studio to record what they've created. I played keys with two music therapists who improvised dubby space operas and groups of children joined in. On the last afternoon everyone performs a song we've written on the main stage in the Kidzfield. It's a completely wonderful thing to be a part of.
And, it is, on the hottest week of the year, along with sleeping in a tent on an incline of a Somerset hill, surrounded by all the musical, creative and pleasure-seeking amazingness you'd ever want to experience all happening - all around you - all at once, and still needing to manage what remains of a chronic health condition... beyond exhausting.
My scooter meant I could dance occasionally - and still be ok. And get around full stop. I have such a desire to party right now, I took my body to its outer reaches of possible hedonism (which it turns out, currently - is about 11 centimetres) and mostly coped. The hard part was peeling myself away, back to my tent to rest after the last act. Everyone else went off into the night, into an adventure. I miss the freedom to have those late night adventures. One of the most dangerous things I can do right now is push through on a second wind, let alone go to alcohol, coffee, chocolate or drugs to help keep me going.
What mattered was that there were plenty of moments of real joy: when I danced with total freedom along with everyone else as the midsummer sun went down, at least for a song or two. I danced a tiny bit more to the bands in the backstage bars. I was mesmerised by Jon Hopkins. I saw some of our crew, including the cellist I have performed with for years perform on a main stage with Rodney Branigan. It was significant for many of us.
I sat on the top of a steep golden hill looking down as IDLES played a loud, thrashy set with a musical brother/soulmate sat either side of me. And I was surprised by some sadness about the fact I'm not performing (yet?). Because I know this isn't my time. The last thing my body needs. And that I also know it's ok. That this is a time to be receptive and inspired, and still enjoy being a part of this festival - that I'm not aware of having missed since 1999.
Glastonbury is impressively well set up for people with disabilities. On the viewing platforms I saw again how far removed what I'm currently managing is from people with really life-limiting conditions. On the last night I properly discovered the access routes that mean I can avoid the crowds and move between stages in as little as 10 minutes. The most glee inducing discovery of all was finding myself zipping around backstage of the Pyramid Stage as The Cure played - apart from actually walking into their dressing room you can't really get any more behind the scenes than that.
On the Monday afternoon as we were packing up to leave, Bernard and I walked to pick up the car and drive it back onto the site as we always do. I had handed back the scooter so had saved my steps, or so I thought. It turned out that they weren't letting any crew cars back onto the site until 9pm. We'd walked about 2 miles in the heat and ended up back at camp where we'd started. My legs gave way. Something inside me broke. My world wobbled and my body was flooded with the deepest physical exhaustion you could imagine. I can't walk another step. And I'm back in a small crash again. As usual, the upset comes - quietly. I'm offered a rest in a caravan and an apple. I manage it, as I've managed it countless times before. Still hard, only I know that this isn't a big deal any more, only a small revisiting.
The intensity of the worst that exhaustion was how it used to feel for most of the moments of my life for at least a couple of years. On many days every minuscule action or activity was a challenge. This is how far we have come. While anyone would expect to be tired, much milder crash symptoms lasted a week or so after Glastonbury. I am definitely recovering now.
Disability is a spectrum. It isn't straightforward. And recovery isn't either. I often feel I have fully or nearly broken free - and then get hit again.
Mostly what I experienced at Glastonbury was a huge amount of kindness. People constantly apologising for getting in my way when I was the one with a space-hogging set of wheels in a crowd. As I bombed around (OK - less when I was in a crowd - I don't think I hit a single person I'll have you know) I found my own way of almost dance-driving my machine, sometimes almost standing up, elated. I heard one comment; 'they're not really disabled'. And it didn't hurt (though I wonder what a ‘properly disabled’ person looks like, sitting down and looking miserable perhaps?). Not everyone understands. But I understand this better now. And I have hope that the world is changing with me.
I haven't felt the need to post for months. Perhaps, on a positive note, as I've been feeling better the compulsion to write hasn't been so strong. MECFS can be so weird to comprehend and live with, I've often found writing about it incredibly helpful in the past. Perhaps my creative energy is going into different things now. Here's a summary of how the last year has gone. I'm already wondering if it will read a bit like a bad Christmas letter - a real one, I hope, even if it's a bit messy.
August 2018 had some really tough moments. My lowest point was lying on the landing, trying not to cry, holding in my pee because I wasn't able to move a few metres to get to the bathroom. After all the freedom, excitement and, how can I put it - nourishment? - of completing the most memorable trip of my life, it was a bumpy landing. I was confused by what was happening to me again, in another physical crash that it took weeks (seven?) to find a way out of. And I was trying to make a more settled life 'work' whatever that means. I lived with my parents (I still do) and thanks to my family will always be sheltered in many ways. I was doing bits of freelancing, falling between the gaps of Universal Credit because I had taken myself off benefits to go on my trip. I was hardly earning enough to cover my medical/recovery costs and going ever so slightly under each month.
I saw no clear way of moving forward with either my recovery or my life in general. By Autumn 2018, having endlessly applied for jobs I was over qualified for but in hindsight not well enough to do, and having recently gone through a very mutual but still painful break up (yes I've kept very quiet about that one - we were together for a year - his support had helped to propel me around the world), I knew something wasn't right. I referred myself to a local counselling service specially designed for people managing chronic illnesses. I was assessed as having an 'extremely low mood' - with a score in the danger zone as far as depression goes and was referred for help pretty quickly. Something in the system worked. The other thing that worked was that, completely separately, with the help of all my medical notes I was properly assessed as having a limited capacity to work. That was a game changer for me.
And... well, things got better. I found a small job I still love, looking after a five and eight year-old after school a couple of days a week. And they're such wonderful kids they give me energy rather than taking it away. We play strange versions of hide and seek together where I stay in one spot without walking on bad days - and still all manage to have a good time. I looked after myself while home alone for much of January and here's the major part - narrowly avoided a crash. I got close - a worrying moment where I stopped being able to walk around the kitchen to cook for a bit even though the neighbours often had me round for supper. I swerved. I didn't crash. That moment was hugely significant.
And as I have often found, if I manage things carefully and gradually, I can keep building up my mobility levels. Making changes to my immune system remained a major challenge - but I had to as I was almost constantly ill, not with the 'phantom' flu-like symptoms of CFS this time but with secondary, actual infections and viruses my body seemed to have no hope of fighting off. Since April I've been making even more progress combing herbalism, Ayurveda and diet to improve how my lymphatic system functions. And it's working. It can be a full-time job to manage but I feel increasingly less rubbish. I have had dips I can't always make sense of - but they are an inevitable part of doing more. Overall I am brighter, fresher, more active. A little bit busier. Able to stay up later. There are real changes happening here.
I am being quietly creative again. Doing small sewing projects on my grandmother's erratic 1960's machine. I put on a small community event that brought different sacred chanting traditions together and it was a success. I spent a huge amount of time thinking it through and applied to a couple of courses to continue training to become a therapist. There may well be other things I end up doing professionally - I'm open. But I've accepted a place on a Post Grad at Oxford University to study Psychodynamic Counselling. It excites me because I'm fascinated by the unconscious mind and relationship dynamics but also because of the importance EMDR and other therapies (especially those addressing hidden stress and childhood trauma) have had in my own recovery.
Even if MECFS isn't completely over yet, there is loads to look forward to ahead. I'm definitely on my way out of here. I haven't found a miracle cure yet but perhaps miracles can happen slowly too.
I'll leave you with a picture of what an increasingly well person looks like. If you've read some of my blogs from my round world trip - you might remember that I couldn’t have made it without wheelchair assistance for every airport and flight. Strangers also made the journey possible by carrying this backpack I was hardly able to lift, all~the~way~around~the~planet. Well here I am in Mallorca seeing friends in June. And the backpack? I happily strolled with it on my back, through Gatwick, Barcelona and Palma airports the entire - freakin - way.
Today's the day I finally get to tell you about Dorothy. And her place in my recovery.
By Summer 2017, things were getting marginally better but weren't exactly great either. Walking was very limited, my world still wobbled and strange flu-like symptoms seemed never ending. Despite project managing my recovery as sensibly as I could, I had been ripping through my savings in doing my best to turn the corner on ME.
I stopped being an advocate of anything that could smell like a Protestant work ethic a long time ago, but losing your ability to work has turned out to be one of the greatest losses of chronic illness. It was sweet and wonderful that I was now well enough that everyday tasks like washing my hair or making a meal no longer presented a major challenge. But one of the flip sides of getting slightly better, is that while you're now well enough to miss the structure, community and sense of purpose work can bring, you might still not be well enough to do much more about it (yet).
I remember almost willing something out loud, 'please God' (the more important point is that I believe our words and intentions can have a lot of power in them). 'Please God, find me something I can do'. And I randomly threw a number out there as I have heard that the force of life appreciates precision: '£120 a week would be great'.
And that same week a close friend rang and asked if I would help look after her mother. Dorothy is in her mid-80s, has severe dementia and at that point lived only a few yards up the road. My job entailed shuffling up Pooles Lane in the early afternoons, letting myself in to Dorothy's house, and many days curling up in an armchair so that she had someone next to her while she napped. I was keeping her company while her live-in carers had a couple of hours off. For exactly £120 a week most weeks. Yes, I found a job where I got paid~~to~~sleep!
Other days were less straight forward. If I opened the front door and saw fruit bowls and shoes stacked inside each other in strange places, it was usually a sign that Dorothy would be having a more anxious episode. Perhaps her carer hadn't had any sleep that night because Dorothy had been continuously walking up and down the stairs, locked in a state of distress she couldn't find her way out of. I would take her out, hoping that a change of scene might loosen something tangled in her mind. One of our more memorable outings, mostly prompted by Dorothy, involved both of us trying to climb a giant tree in the church yard, spying on people as they walked up the hill from the station and her drinking directly out of the spout of a teapot in the local Deli. On good days I could deliver her home in a very different emotional state.
We'd cuddle up on the sofa and watch TV together. Spend hours sat there, doing nothing more than listening to music. And we would both laugh until we cried. Dorothy can be, and can find things, hysterically funny. We would sit there in tears of laughter, our bellies aching.... her saying 'I can't, I can't'.
I was nearly always nameless to Dorothy. I became someone whose role in her life changed vaguely and intermittently, moment to moment from best friend, to colleague, to mother, to daughter and occasionally, a stranger. And who I was to her didn't really matter half as much as the simple fact that I was there.
I wasn't always able to be very active. In contrast, Dorothy was robust and very fit. I would keep one eye constantly on the door; Dorothy could disappear in a flash and cover a huge distance before being found. I'd often ask her to look after me. Tell her when I wasn't feeling very well (which was far easier than my hanging on to her). And she would hold my hand tightly, keeping me safe as a car narrowly skimmed the pavement.
I spent 6 months as Dorothy's respite carer. When at its worst, chronic illness forces you to understand that you have an inherent value as a human being - you don't have to be turning the cogs of capitalism to have a sense of belonging in the world. And it's often painful getting to that point, to lose the way you always operated out in the world. And at the same time, finding a sense of purpose and somebody who I could make a difference to, I believe, played a big part in my walking and activity levels gradually increasing. You have to find a daily structure that supports you, as soon as you are strong and able enough to carve one out for yourself.
It's rather strange writing about Dorothy now, knowing that she will never be able to read this. You need to know that she has had a remarkable life, worked as a teacher and had four children. Dorothy moved to a home for specialist care with a large vegetable garden and chickens in the early summer 2018. She is surrounded by company and well cared for. I'll be visiting her again soon.
Dorothy taught me two things; firstly to be present. Much of our time together was a bit like being inside a cross between a Beckett and an Alan Bennet play. Where we were, what sentence we were in the middle of was constantly in flux. My job was to dive in and be with her, wherever she was, inside of each unfinish-able moment. It was a game of constantly improvising. And we both often found our own kind of rhythm and quite often even joy in it.
Dorothy also taught me how lucky I was: while her mind was unraveling, I had all my lucidity and my whole life in front of me. My situation was get-out-able of. And there were moments when because of the circumstances I was in, we understood each other more than many might. There was a time when she so wanted to swim but whenever we approached the pool, kept feeling too dizzy and nauseous to step into the water. We kept trying.
That day we decided to give up on the idea. It was too much. She had an occasional moment of near lucidity; "Something's happening to me, I know it. This isn't right".
And I didn't know what I could truthfully say, except, "I know Dorothy. I promise, whatever it is, you won't ever have to do this all on your own".
Paddy got in touch and asked if I would be on the show.... and talk about living with and recovering from MECFS. We talk about learning to live within your physical limits, when to push through those limits and Paddy's Marathon run (!). We also discussed the grief of chronic illness and what might be waiting over the other side once you've fully allowed yourself to go through it.
Here's my Chippy WellFest talk, focusing on the lessons ME/CFS have given me that could apply to anyone.
Video by Luke Koch de Gooreynd
I've become part of a small movement that has set out to help my local community in a corner of North West Oxfordshire to become medically proven as one of the healthiest in the UK.
Here's a taster of Chippy WellFest, a full day of talks, discussions and getting people's bodies moving to challenge the way we all think about and prioritise our health.
The project is being pioneered by Nick Parker, who has managed to keep a terminal cancer diagnosis at bay. Nick had an especially aggressive form of prostrate cancer, but last Christmas became one out of the 17,000 people who are living into their third year from stage 4 of the disease. While Nick will never be able to be complacent, there are currently no indicators of cancer in his body. He did it through relentless experimentation and along the way has doggedly pursued what it truly means to be healthy. Nick is on a mission to transform the way we all think about our health - something that now reaches far beyond the medical.
Inspired by the Blue Zones Project in the US, Chippy WellFest is focusing on the role of community in transforming wellbeing. The focus isn't only on longevity but also what it really means to live well.
My own take on all this comes from the way that ME/CFS has forced me to build a life that fully supports my health. And to see that I can be 'healthy' even if I have a chronic illness (luckily for me, it could at long last be a rapidly diminishing chronic illness). A while ago I had the sense of what I needed to create, and imperfectly started to describe it as 'A Spacious Life'. For all of us, it means not only being more conscious of what we put in (and on) our bodies, but also our activity levels, making sure we get enough recreation whether that's moving fast or rest and down time. It involves our sense of purpose, work we have the headspace to enjoy and the feeling of belonging in a community. It means fully accepting the immense pressures some of us face - work, children - and yet still building a lifestyle that has some give in it. Time to STOP, to slow down, room for self care, enough minutes to stop and chat to someone and participate locally. It requires extra slack in the system for when things go wrong. In reality it is as much about what you choose to let go of as what you to take on.
I was one of the 12 speakers at Chippy WellFest and the day wasn't only informative and inspiring. Catharsis was the last thing on my mind as I walked onto the stage to share the wisdom that living life with ME has given me, but catharsis is exactly what happened. I've turned a page in my recovery story and can start giving much more back now.
It’s over 3 months since I stepped off my last plane at Heathrow and I took a break from blogging for a while. This first chapter of putting together a more settled life has been very up and down. But I was never expecting things to be easy. And it's been hard to even write a progress report because even I haven't had the clearest idea of where I'm at. The good news is, I am still a lot better. Parts of me are more well now than they have ever been. Very little hurts any more. And it has been a warm summer full of family.
I had this real hope when I landed back in the country that a large part of ME/CFS was ‘over’ for me now. That was how the story was meant to go. Instead, my immune system soon decided that now I was home, it was safe to allow my body to catch what felt like every infection imaginable. And then my mobility took a little nose dive.... I finally left Oxfordshire with a crew pass for WOMAD and rapidly ended up in a mobility scooter on the hottest day of the year. I was forced to come home early. While it's a far from accurate interpretation of events, I couldn't help but see this as a failure. 3 weeks ago I was lying on the landing for almost an hour, doing my best to forget that I needed to pee, while I built up the strength to walk to the bathroom. I had seriously crashed again for the first time since I was in the South Pacific at the very end of April. Every time I crash I am surprised at how upset I get - part exhaustion, part deep disappointment. But if you were to stub your toe really badly once every couple of months, no one would expect it to hurt any less each time you do.
I know this just a blip. Some friends (yes more kind friends) asked me to house sit while they were away. And I looked after the garden. I was happy to be a bit more independent again... only the experiment proved that right now I still need looking after. By the evening it has been hard to put my own food together while living on my own. All the basics of life started to become a challenge again. I'm back with my parents, wondering how on earth I made it around the entire globe.
I'm describing this next challenge as 'building a life', which sounds a touch over-dramatic considering I’ve never stopped living one! I'm working towards being settled somewhere, finding a way to make things work financially. Ideally being totally independent. And the financial bit is crucial - I don't think I've ever made it clear, as I galavanted round the planet, that I have never fallen into a giant vat of money. The last of my savings made it all possible and apart from my flights, I lived off less than I often used to in the UK. And of course it was the right thing to do. I don't regret an instant.
I’ve started a bit of work, helping out one of the most experienced yoga teachers I know update the copy on her website, perfect considering yoga and meditation has become such a crucial part of my recovery. But starting more work again came with another surprise. About 20 mins in to sitting down at my computer, to edit something, or post some photos or write an email, my symptoms started to flare up again. The harder challenge is that my mind often went fuzzy to the point that it was hard to think. And I don’t understand it at all yet but it seems to be connected to any type of concentration - this is a neurological condition after all. It doesn't seem to be stress related - it even happens when I’m super relaxed and playing with some paint.
But I can feel how much my soul needs to work now. To write, tinker away at things, make things, paint. I can feel it all coming. I've since made loads of progress with the headaches and managing work. For a while my recovery seemed much slower now I'm working but I really need to do this. And - in much the same way as I gently coax my body back to activity, I think that so far I might have cracked it. I usually write for 30 mins and then take even longer resting away from my screen. And this last week things started to get a lot easier. And on top of that, I've started to walk around more and feel better again.
I've been asked to give a TED-style talk about what I have learned through living with ME at an event in a couple of weeks. I had no idea how to describe myself for the programme... until I found out the organiser had already billed me as a 'Chronic Fatigue Thriver'. Oh, so that's who I am! As it has turned out, if travelling around the world was a declaration of anything, perhaps it was about how richly and wonderfully we can all live, whatever the circumstances. Doing it all with ME/CFS, giving my body exactly what it needed for much of the time. The distance I travelled wasn't nearly as relevant as the experiences, the lessons and the people I met. I will always remember ME as the thing that galvanised me to complete the journey that formed one of the fullest and happiest 5 months of my life. Whatever happens next, I know exactly how good life really can be.
An ME/CFS Thriver