When we finally found it, I felt like there was hope again. There are very few clinics set up for treating people with M.E. and Linus and I heard about a clinic in the Breacon Beacons, near where we live.
It looked amazing, set amid parkland, with an on-site nutritionist, physiotherapist, occupational therapist and pain management experts.
People whose job it was to help me live, to encourage my body to heal and hurt less.
Quickly, where do I sign?
But then the fine print; you couldn’t go unless you were “self-caring”.
I care for myself – I love myself – I really, really care about my well being. I really, really want to keep on being alive (please).
Not that kind of self-care.
Unless you could get up and get dressed alone, climb up and down all the stairs, get your own food and eat without assistance as well as using the loo and the bath without anyone helping, you were not considered self-caring and so would not be accepted into the facility. Even if you could bring your own carer with you, that wasn’t allowed.
And no, I am not making this up.
Caring in sickness is something else.
It can be hard sometimes to see blithe exhortations around different blogs or on social media urging me to practice self-care.
It’s not all bubble baths and telling yourself you are beautiful 5 times every morning.
Caring can get all tangled up when it’s something we desperately want to do for ourselves and can’t.
Or when we are aware that for our basic care needs to be met someone else – sometimes an unpaid carer, sometimes a care worker – has to work hard to meet those needs. And honestly, do you know a carer who isn’t overworked and underpaid?
If for us to explore a new adventure of, say, going for a walk each day, someone else has to change their routine to walk beside us, steadying us, it doesn’t exactly invite innovations.
When you are very ill or grieving, when your life is in a crisis or if you have a carer, it can be easy for you to lose your voice. The doctor, the surgeon, the new expert on TV, everyone listens to these people over you.
Can your self-care then be around finding your own voice under all of the books and advice?
Can it be listening to yourself and moving towards acting on what you need?
You are not your disease. Self-care can be caring for the you that’s living in your body.
This has been so so hard for me to reach. My symptoms have been so overwhelming everything else was engulfed by them. Because honestly, when all you are doing is vomiting, what you are wearing to do it takes a back seat. But when I got more used to being ill and was no longer shocked and floored by the whole living-in-pain thing, I started to unpick the tangles and find myself under the pile of diagnoses and symptoms.
If you love rock climbing and you can’t currently climb, well that’s still a part of you. I couldn’t sit up, but I could choose the music I wanted playing as I lay in bed. Small steps worked for me.
Illness gave me an opportunity to look at what I really wanted to do.
Sure, perhaps it was the wrong time to do that, what with not being able to move out of bed and all that. But you know how sometimes you want to do something really different, but you can’t rock the boat of your life? Well, when crises rocked my life for me and knocked everything down I just decided to put things back together in a different order.
And it just so happens that my carers are coming along with me. Linus loves green juice, my assistant enjoys yoga classes. There were good things I didn’t see and we hold on to those to balance out the harder parts.
I decided to bring my voice to the forefront of whatever I did.
What my self-care really looks like.
I see self care as practicing what I already know – not the latest self-help fashion.
I see self care as tuning in enough to know what feels good for me and then moving towards that.
Self-care for me starts with space and “enoughness”. It’s possible to overload ourselves with what we think we should be doing to the point where it stops being caring and starts becoming overwhelming. Self-care isn’t about adding another item to our to-do list.
Self-care is as much about letting go of what’s not serving you as it is about bringing in new things into your life that do serve you. Adapt your self-care to fit you, not the other way around.
If I watch myself, I notice that on most days I don’t feel like doing exercise – I hurt most of the time.
But you see, once I am doing the exercise, some of that hurt eases, I come out of my head and into the movement of my body. My right hip, for example, hurts less after I do yoga and lots more if I don’t do yoga.
I work better, I move more happily, live more freely when I’m warm and in movement. Lying still does very little for me. I get stuck and can’t move.
So my self-care is noticing that I need warmth and space to move about and making sure I get that.
And sometimes that looks silly.
Like going to college in 4 layers of skirts and a full length faux fur coat, because the heating was broken in the classroom, but I can’t sit for still 3 hours in the freezing cold and study. I can’t sit for 3 hours and do anything but be in a great deal of pain.
It also looks like doing yoga in a car park – because we’d had a long drive. It was so long that I’d started having muscle spasms which were painful on their own, and more painful because they threw my aching limbs everywhere. I couldn’t carry on with the day like this, so out came the yoga mat and I stretched.
Did people stare? quite possibly. I can’t say I noticed. I was too busy focusing on me and, well, when a person is as beautiful as you and I (and all of us) are, people do stare. That’s ok.
My self-care struggles
I am learning a lot of trust, and to let go of micro-managing myself and my entire world.
Sometimes the laptop beckons, sometimes it’s a novel.
There are days when I tell myself a story about hurting too much to move my body or feeling too sick to take my pills when really these are just what I need.
Maybe I need to adapt those practices, maybe I need gentle dancing not rebounding that day, or a slower yoga practice.
I can come up against resentment too – why must I do these things? If I leave my practices I feel it in my body, I can’t skip out a day without struggling. My body is my reminder.
These are practices I may well carry with me for the rest of my life, some days it feels like they hold me back from running in life, but they allow me to live my life.
I am learning to state my needs without justification. In a society which can consider exercise, good food and sleep as luxuries not essentials, time and time again I create space and just do my thing.
Every day I wake up, get up and turn up at the mat is another blessing.
Self-care begins on the inside and with internal shifts, rather than with outside activities.
If you want to add self-care activities to your practice, perhaps begin by choosing one self-care activity and focus on deepening rather than progressing.
What I wish everyone on this planet understood about what it means to care for yourself gently and kindly
It’s really about you.
It’s not about what I say, or what anyone else says.
It’s about the tangles in your head and what self-care looks and feels like for you. My opinions are only as useful as you consider them to be.
This is your experience, and I am just happy that we are on this journey together.
Originally published in The Pillow Fort Magazine
Photo courtesy of Stefan Kunze