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