Coming Out Fighting

Wow, I really did disappear off the radar didn’t I? Again, I plead forgiveness. There would have been no coherent way to articulate just how much of a struggle life became. I slipped under the relentless waves for the longest time, not sure how I could facilitate my own survival, only knowing I had to for my family. That in itself felt too much on more days than I care to remember.

I tried so hard to look after them, after me and feeling like I was failing all the while. I know this isn’t true but the weight of mental health when you’re in distress is incredible isn’t it? I didn’t know how to find my way through to the apparent light at the end of this tunnel I’d stumbled into.

I have cried, sobbed, shouted and screamed more times this year than I can admit. I have been so close to absolute defeat several times, scared out of my mind because I couldn’t comprehend what that looked like having been fighting my whole life to stand up on my own two feet. I have become such an overwhelmed and shouty mum. I began to hate myself, wondering if/resenting that this was all I was going to be forever. Because I knew my girls (& I) deserved better. I have had tension everywhere in my body for months, my poor husband has wondered where the woman he married has gone and I’ve been horribly convinced she was never coming back to rescue us all.

First, some universal truths about this disabled mummy as a person, a mum & the world at large:

● Parenting a child is hard. Parenting more than one is undeniably insane

● I love my children endlessly. They are the light of my life and make my soul whole.

● The process of parenting however, that is, the endless life admin and responsibility is incredibly draining. Of course I do it but I feel increasingly that there’s a reason no-one clues you in about its sheer volume and weight. If anybody did, it’d scare the human race into extinction.

● I am still not at peace with my physical limitations as a disabled parent. I am 5-and-a-half years and 2 children into this journey and it still breaks my heart that I do not feel brave or safe enough to physically play or carry my children to bed. I am acutely aware there is nothing to be done about this but it does not lessen the pain of being cheated in this way.

● I am a control freak. I have always been because my independence was so hard won. I cannot relinquish it now. So I take responsibility for so much in my family. Probably more than I should. Not because I have to but because I cannot let it go because if it’s not done the way I have learnt to, then it is a failure on my part and I cannot fail those I love the most. The mental load I have therefore found myself carrying is unsustainable.

So something has to change right?

This month, we took the girls to the Isle of Wight on holiday. It’s a beautiful place, the birthplace of my late mum. It felt special to be there.

But in the same breath, it felt incredibly hard to maintain the necessary care of home (brushing teeth, washing hair, eating well etc) in a foreign environment when everyone wanted to feel the fun of holiday. It was exhausting. I did not feel much like I was having fun at all and I felt so guilty. Being the grown up isn’t that much fun after all. Trying to get little ones to listen or behave was exhausting. I was tense and constantly found myself snapping and getting exasperated with everyone. Totally not the parent I wanted to be. I thought to myself: “There’s no way through this. May as well get myself some anti-depressants when I get home.”

I actually got food poisoning on holiday and ended up sleeping for 13 hours not long after this thought so thank you tummy bug, Mummy was restored! Our last day on holiday was at an adventure park and it was the nicest day I’d had in a while.

But the truth that became starkly apparent was that this was not a sustainable way of living. Surviving is not enough. This family deserves love and fun.

And so, changes are afoot. It has only been a week since we came home so it’s by no means flawless, there’s still a way to go, but I feel it’s important to share positive choices because I rarely make them for myself. But this week I feel better than I have for the longest time.

● I am logging my fluid intake. I am usually chronically dehydrated because CP gifted me with incontinence issues in my childhood that made me scared to ingest too many fluids. It’s only recently I’ve realised that my banging stress headaches and terrible sleep are trying to tell me something worth listeningto. So now I’m logging (at least) 1.4l a day and actually it has been surprisingly easy. My body is clearly glad of it as I’m sleeping better and (shock of shocks!) I haven’t really fancied the wine I’ve poured in the evening.

● The beige food of holiday means I have put on 5lb that just wasn’t worth it. Last year I studiously got my weight down by 24lb. But at Christmas I gave up to enjoy the season and simply couldn’t make myself care when 2022 rolled in, I think because so much hard work had already been done. And until holiday my weight held steady. But I’m no longer happy with it, as I have a beautiful dress to get on for my university graduation at the end of the month, where I had to buy a size 10, not because of a trim waist but because my post baby boots were so deflated and sad they couldn’t hold the size 12 up. So I’m back to calorie counting via My Fitness Pal. I’m grateful for the mindfulness it brings back when it comes to food. I am no longer out of control.

● I have also made the decision to start taking St John’s wort, a herbal antidepressant. For 3 months daily in the first instance, just to give it time to see if I feel the benefit. I have always been so resistant to conventional antidepressants because my parents both seemed unable to cope without them. I figure there are other ways they didn’t feel able to explore. I don’t expect miracles. In fact, I’d be perfectly happy with a placebo effect, because that in itself gives me back a sense of comfort and control. I inexplicably have been able to keep the shouty mum mostly at bay. (Note the mostly, but the sense of relief at not feeling overwhelmed with guilt when I look at myself in the mirror is honestly palpable.) This week, I truly believe I am a better mum. And that belief so far has produced the best me of a long while.

● Having things for me is no longer a dream I feel like I’m chasing. I’m moving more again. I’ve begun playwork qualifications courtesy of our local council (something I have always wanted to study purely out of interest.) Out of it may come the opportunity to provide and facilitate some lovely play opportunities for little ones & their parents in our community. I can suddenly see that not everything the stay at home life can offer me is domestic chores. I am very slowly accepting that those can wait a day longer. I am allowed to want to see friends or improve my mind for a few hours or take care of myself with a much needed and appreciated massage or more recently acupuncture. It feels a lot but I have to feel able to say I am worth it or else, how can I give my girls my best? Without the amalgamation of all these things, my best cannot exist to give to them.

I know there is still so much work to do but suddenly the challenge doesn’t feel so insurmountable. At last, this tunnel doesn’t feel so dark and I think… I think I see the light at the end. Hello old friend, it’s been a long time. I’m so very glad to see you.

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