For the first time since I became a mother in 2003, today is both Mother’s Day AND International ME/CFS Awareness Day. Juggling CFS and motherhood is something I’ve got used to over the years, but it’s far from an easy juggle. Most of the time I do pretty well, but today is not one of those days – ironically!
Being a mother is the most fulfilling thing I have ever done and my daughter brings me joy daily. She is the light of my life, and my love and devotion to her have kept me going through some pretty hard times. BUT being a mother and having CFS and electrosensitivity can be hard. Very hard!
If you haven’t already picked up from my previous posts, I’m one of the most positive people you’ll ever come across. I have plenty of down times, but they don’t last too long before I bounce back up (with a few notable exceptions which I have written about before). I wanted to deliberately write this post while I was feeling down about my struggle with CFS and motherhood, rather than put the normal positive spin on it – which I’m sure will happen by the end of the post anyway.
This morning when I picked my gorgeous, bright, bouncy 9 year old daughter up from her Dad’s work, I was greeted by her normal 1000 watt smile before she exhaled and the chatter began. It rarely stops. Most of the time I just marvel at the ray of sunshine that is my child, but today, on Mother’s Day of all days, I didn’t marvel. I felt overwhelmed, angry, frustrated and guilty. And I felt like crying.
I’m in the middle of a VERY fatigued fortnight (after 8 months of feeling much better), and the responsibilities of motherhood today feel totally overwhelming. I want to lay down like a toddler and kick and scream, while yelling “I don’t want to! I don’t want to!”. But you don’t get to do that as a Mum. I don’t have a choice. I AM a Mum. I don’t get to choose whether to BE one or not. I only get to choose what quality a Mum I want to be.
And I want to be a great Mum – like most Mum’s out there do. But with the tiny reserves of energy I have available to me right now, I barely feel able to care for myself, let alone another human being (Oh, did I mention I’m a single Mum too, so it’s me or no-one in our household – though her Dad is great and very involved in co-parenting). Frankly, today, and on many days when I’m juggling the pain of electrosensitivity and the fatigue and other symptoms of CFS, I want to be selfish.
Selfish? As a mother? How horrible. Wash your mouth out Louise! It’s not often seen in parenting books – “Today you need to be selfish!” Our society does not condone selfishness in any way. But maybe I need to change the word. It’s not really selfish, it’s self-care. You hear of people taking “mental health days” off work. Today I need to take a “self-care” day off mothering. Shame you can’t really take days off being a mother when you just don’t feel like turning up for the job.
But if I don’t look after myself, both mentally and physically, then who else will? And if I’m not physically and mentally able to care for my daughter, who else will? Of course, there’s her Dad and step-Mum, all her grandparents, aunts, uncles and the whole clan who’d step up to the mark and look after her if need be, but it would take a pretty HUGE relapse for me to relinquish care of my girl. And so it’s a matter of needs must. So I do!
I feel immense guilt at times that my little 9 year old doesn’t have a healthy Mum who can do all the great things healthy Mums do with their daughters on Mother’s Day and other days. I feel guilt because it is all she’s ever known, and she sometimes has to take on a carer role to me when I’m really unwell. She is incredibly intuitive and picks up when I need a hug or need her to be quiet. Even writing this is making me uncomfortable as I reflect on how it must affect her little mind at times.
Oh, she’s definitely not hard done by, and has learned to be a very caring and thoughtful child from seeing my struggles first-hand. I hope too that it is teaching her resilience, and that no matter how hard things get, there are always ways to get through them and bounce back. But when my physical reserves are low, so are my mental ones, and today I feel like crying for all the things I can’t give my kid because of CFS. Stupid, irrational thoughts pop up and I even sometimes apologise to her that I’m sick and that she doesn’t get to have a healthy Mum.
The really stupid part of all this is that my daughter loves me just the way I am. Just like me, she sometimes gets frustrated that my health restricts us from doing certain activities. Just like me, she sometimes wishes I was totally healthy. Just like me, she sometimes resents that I’m not. BUT we have an awesome relationship, quite possibly the envy of many others.
So there, I’ve got to the positive. I knew I couldn’t hold the negative stuff too long. It’ll pop back up, but I’ll get past it every time, mostly because I have a smiley, chirpy, effervescent little girl calling me forth to be the great mother I know myself to be :-).
I plan to write a series over time about CFS and motherhood, so stay tuned for that. I have almost completed a series on CFS and pregnancy after a reader inquired whether I had written about that. THAT is a much harder one to write about because it was far from positive, but I’ve decided to write it anyway because someone might get something for themselves out of it. I just need to type it up now (I hand-write most of my work, then type it later, due to the electrosensitivity) and post it in a number of blog posts.
Happy Mother’s Day everyone!