Jenny I often talk about ‘self-care’ on this blog. I might not be able to work due to my MS, but I can certainly enjoy getting my nails done occasionally. But that isn’t the self-care I do most regularly. When you’re a ‘spoonie’, self-care is less about the treatments (though I do try to enjoy these if I can) and more about the things that we do to feel as well as we can with our chronic illness.
Nothing has made this more apparent to me than in recent weeks; over the past month I have:
- Started a new gym routine (simple strengthening exercises)
- Dealt with increasing spasticity of my limbs following my HSCT treatment
- Been on holiday
- Had the pleasure of seeing my kids over half term break – although I could spend more time with them, I had less opportunity to rest
The consequence has been that I feel physically shattered. I’m not sleeping well, due to the pain in my legs and hips, but I still try to be a ‘functional human’ as much as possible – getting up with the kids, keeping on top of the house. The gym routine which I wanted so much to stick to has fallen by the wayside. How can I spend time walking on a treadmill or carrying out luxury beauty treatments when I can’t even get off the couch easily once I have sat down?
No, ‘self-care’ goes much deeper for me. It is about doing whatever it takes for me to feel as well as I can be. Some of the things are pretty basic, but, for me, fundamental to being able to function as a spoonie with a degenerative chronic illness are:
Bed days
Sometimes my body just says ‘stop’. That is when my bed beckons me and I use the opportunity to read a good book or sleep. Some times it is a ‘bed afternoon’, or even a ‘bed week’.
Feeding my soul
Prioritising the energy that I do have on spending time with my family. Reading, watching a good series on Netflix, playing brain games, crochet and Skyping with my sis in Oz are all parts of my self-care. I’m not a religious person, but I also feel like yoga and meditation help me to take time out and prioritise my mental health. Enjoying nature, just by sitting in my garden enjoying the sun in my face (when it appears!) is restorative and restful.
Saying no
Sometimes my head doesn’t want to say ‘no’, but my body does. I know that, in the long run, I will benefit more if I were to limit my plans; my body will be able to function better and I will truly appreciate the times when I do manage to make it out.
Anticipating and pacing
I have to admit to myself that I physically can’t keep going like I used to. Just last week, I tried to stick to my ‘three workouts a week’ in the gym following our holiday. But, but by the time my third session came about, I had to admit defeat. I should have anticipated that the holiday was going to take it out of me and miss my Monday and Friday gym sessions instead of pushing through, but I didn’t. This week, I’m doing less; fewer workouts (one or two instead of three) and spending less time when I am there. Maybe over time, I will be able to get back to the ‘three workouts a week’ plan, but if I don’t, that’s ok; I need to listen to my body.
Leaning on family and friends
Pride goes out of the window when you’re a spoonie. I receive so much help from my friends and family and I am very grateful. It is an important part of my spoonie self-care because it means that I can focus my energy on what I can do and not what I can’t. My kids get to have the life they deserve (running around with grandparents or going on camping trips with my husband) because I’m accepting of the support that my family and friends provide.
Not underestimating the importance of ‘boring self-care’
Have you seen Hannah Daisy’s work? She stresses how self-care isn’t actually about treating yourself but, instead, those things that we have to do to enable us to live and survive – her hashtag is #boringselfcare. Things that are as simple as eating well, showering and vacuuming, so you have a clean and cosy environment. Things that can be so, so difficult for us spoonies but maybe not for others.
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Do I still do self-care in terms of face masks? Occasionally, if I feel well enough. But I might have a glass of wine in hand at the same time. And I don’t feel guilty about it, because being able to truly enjoy a glass of wine in my PJs on a Saturday night is exactly the kind of self-care that I need.
Cheers and here’s to a restful weekend with lots of spoonie self-care!
I remember writing about ‘alternative self care’ before, I think for Valentine’s maybe, because these points like you’ve raised often get forgotten about and ‘me time’ and ‘self care’ become about face masks and such. You’ve done a great job with this post, I love the diversity you’ve covered from the ‘boring’ bits and taking your meds, to saying ‘no’ when you need to and pacing. I’ve found prioritising self care to be a bit of a challenge at times, especially with guilt coming into the mix, but it’s definitely a worthwhile investment for mental and physical health and overall wellbeing ♥
Caz xx
That’s Caz 🙂 Guilt is definitely a factor. I know in my heart that it is the right thing to take care of my health but I am also aware that putting myself first may inconvenience others at times. But I do feel so much better overall when I make sure I do it xx
Love this post, Jen. I agree that this is exactly what self care is all about. It’s not about pushing through and trying to achieve goals (though it’s easy to forget as I know myself!!). It’s about listening to our bodies, being kind to ourselves, and as you say so well, feeding our soul xx
Thanks Emma 🙂 xx