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.
An ME/CFS Thriver