I got caught in the rain on Sunday doing my daily walk and instead of cringing or shrieking or running to my car I just grinned, exulted to be out in the elements and feeling alive. I strode on down the path and put my face up to the falling water and felt happy and hopeful. It was just a little thing and a fleeting moment, but two years ago I was too sick to enjoy much, let alone find the bright side in getting rained on. And it’s little things like this that tell me I’m getting better.
Before I got sick I used to walk and run around the parks near my houses with what approached religious fervour, so that rain never stopped me, I just put on a raincoat and hat and strode through the wet. In fact, as crazy as it sounds to non-runners, running in the rain is pretty special, your body is hot from your exertions but your exposed skin is cold, you’ve normally got the park to yourself and you know there’s a warm house waiting for you when you get back. So for me to get caught in a rainstorm on Sunday was really a glimpse of me being fit and active again and not caring that I was getting soaked to the skin by a surprise rain arrival. I think there’s also something childlike about it, that same urge to splash in puddles rises up in me as I feel the water spitting against my face, hear the wind screaming and my footprints squishing out behind me. Anyway, this rain I was caught it made me feel alive. Sick people don’t get caught in rainstorms, sick people are stuck at home or in bed, but people who are getting better, who are increasing their graded exercise regime ever so slightly might get caught in them, potential chronic fatigue conquerors too…
So when this rain came down to slap hello I tilted my face up and enjoyed each drop hitting my skin. I’m alive, I’m better than I was this time last year, I’m loved and have friends and family and I’m well enough and determined enough to do my graded exercise therapy. I think those five minutes in the rain were far more entertaining than any of the copious tv series I’ve watched this year! And even the act of lacing up my insanely bright runners makes me smile now; it reminds me of past sporting adventures and allows me to think of future ones; no ugg boots for me this morning, it’s exercise time! Sure, I’d prefer to run up and down the track at home, but I’ll stick with what I can have right now and be happy with my walk.
In addition to enjoying things more lately, I’ve been finding myself being more present in the moment – thanks mindfulness meditation – and able to stay in the now and not worry about the future. I think it’s this shift in my thinking that has helped me enjoy things more. I sat down by the river today after my mini-walk (up to 520m for those playing along at home) and just watched the water and reeds and trees and birds and sat there, in that moment. Whenever my mind started to wander and I was thinking about future or past events I just focussed on the sound and sights in front of me. I looked at my watch after a while and realised I’d been sitting there for 15 minutes, not really thinking about anything, just enjoying the moment. Now, this might sound like hippy waftiness for some, but when you have a quick thinking brain like mine that prefers to anxiously open ten doors at once rather than be still it’s quite something.
When I stop and be present I don’t worry about whether this drive through the countryside is going to result in massive payback once I’m home, I just drive. I enjoy the twists and turns and gear changes and watch the world around me – rather than the ceiling of my bedroom… If I’m going to pay for the drive then I’m going to pay for it, my body will scream “rest now you idiot” and I will rest; thinking about the possible variations of awfulness that are involved in a CFS crash isn’t going to make them not happen, in fact with the mental energy involved in worrying it’s more likely to bring a crash on quicker.
I’ve been thinking about this idea of fear and anticipatory thoughts a lot lately and think they are definitely holding me back in my recovery. If I know I can do something – such as my walk – then there’s no need for me to ruin it by stressing. If I know I can do something like bake some biscuits then I shouldn’t anxiously check the time in worry that I’ve been standing for too long; stick to your plan and rest between ingredient measuring and actual mixing and you’ll be fine, as evidenced by the countless biscuits you’ve baked this year!
It’s a tricky concept to explain, it’s not at all that this illness is “in my head”, it’s truly a multifaceted physiological illness, it’s just that my body has become conditioned to any use of energy beyond TV watching resulting in a crash. So if my adrenals kick in and my thoughts start racing and I start to feel nervous about what if I overdo it, then I’m probably not going to get to do, let alone enjoy, the actual activity. It makes sense to me that if in the early stages of my illness I had to sit on a stool to shower as I got weak and dizzy that showers became associated with overdoing it and crashing. I now shower easily – thanks to the progress my body has made and how much less overstimulated my nervous system is – so I know it’s not a big deal for me today. But on a bad day the same fear creeps in, what if I faint in the shower? Well, I’m more likely to faint if I’ve expended my allotted shower-energy in fearing the tumbling of water on me.
And this fear isn’t stupid, this fear is learnt from failing time and time again to do what I want without paying for it; to do things I absolutely took for granted before getting sick. This fear is learnt from swaying at Christmas carols towards the wall of the church because I’ve been standing for too long in a hot room. It’s learnt from going to a dinner with friends and not getting out of bed the next day until 2pm when you know you have to eat as ‘food is fuel’, but the idea of food repulses you. The fear is learnt from switching your alert self on to drive down the coast and then spending the rest of the day drooling into your pillow upon arrival at your destination as your head hurts so much. This is the tricky part, fighting against this Pavlovian conditioning to do something you are capable of without cutting yourself off at the pass by being scared to do it. And this is made all the more difficult because the pain and payback in CFS is awful, it’s not about overdoing it for one hour and needing to rest for one hour, it’s more like overdoing it for thirty minutes and the next day being wiped out.
So, today as I sat under some gumtrees by the river I just smiled. I smiled at being outside, dressed in real clothes not PJs, strong enough to sit cross-legged on a slope and clear-headed enough to do a new meditation. I looked up at the gums and was content; yes I’m still sick, no I haven’t recovered yet, but those 15 minutes under the tree, they were better than most 15 minutes I spent working before I got ill… After two and half years of CFS enjoying just 15 minutes with no symptoms from this illness is bloody brilliant.
So happy for you! I am at such a similar place in my recovery and it makes my heart swell to hear you echo many the same sentiments. I too am in the process of truly letting go the fear…my body and mind are stronger, but also I know the cycles inside and out now after 2 1/2 years. It’s not fear of the unknown anymore, I know what will or will not happen so I can just let it go. And just try to be present, sick or not sick…like you on that gorgeous rainy walk. I am heading out for a six minute rainy walk myself. Joy! Thanks!!
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Oh this comment makes me so happy! Well done on all your progress, we do sound like we’re at the same point don’t we! It’s amazing how good solidarity in this illness is 🙂 hope your rainy walk was as special as mine! All the best in your recovery Xx
Just stumbled across this lovely post. Love the way you write and can so relate to your words.
I’m in a bit of a setback at the moment, after many months being SO much better. Thank you for helping me tune into memories of progress from earlier this year. Those little moments are just wonderful aren’t they? This illness makes us so grateful for the small things…and for that…we are (in a strange way) blessed.
Look forward to having a read of some more of your blog tomorrow 🙂
Oh thanks so much Emma! Lovely to wake up this morning and read this. It is so so hard being in a setback when you’ve been doing well so I hope you bounce back soon. Totally agree that ability to be grateful for the small things is a blessing from CFS.
Hi! I have cfs too! I’m coming up to almost 3 years. I’ve never met anyone with cfs before nor talked to anyone with it through the Internet. I related to your every word and it was very comforting. So happy your posting about your experience 🙂 much love from, England
Hi Jodi, thanks for your comment, I love to hear that people can relate to what I’m writing about, writing my blog has been such a good way to connect with chronic fatiguers around the world! Makes me pretty happy too as I love writing! There are some great support pages online if you’re interested, some terribly negative ones too so be careful. I so hope your health improves this year xx from Australia