I constantly seek comedy. It’s a great way to pretend for a moment that the world is a happy and fun place.
I recently saw a meme that kind of stuck in my head. It said “when life gives you lemons, you make lemonade. But what if life gives you onions? I don’t like onionade.”
It made me laugh but also it was strangely profound to me. You see lately, I feel like I complain too much. I let things accumulate and get to me. I get upset over things I can’t control. I can’t control my child’s behaviour. I can’t get more sleep. I can’t stop seizures. I feel like I am having a constant mental battle to pretend that so much of all of this is okay when actually it causes us all a lot of grief. None of this is anyone’s fault.
I remind myself over and over that this is our life now, you have no choice but to accept it. Sure, I can research new medications, get involved on forums and so on. But there is only so much I can do. But sometimes life keeps on giving me onions.
I feel that amongst my peer group, and in our community in general - mental health has taken a bit of a nosedive. With the pandemic it was inevitable.
There are many of us that pre corona, were just about getting through to bedtime each day. But then the rug was pulled from under us and we are suddenly surviving in isolation without any proper respite services. Routine is out of the window. I used to complain that some days even popping out to get milk was a mammoth task - in this current situation that’s even more the case now.
This month I wanted to write a positive and uplifting blog. I wanted to try and make everyone feel hopeful and that amidst all of this chaos we will actually overcome it and life will become normal again - whatever normal looks like to each of us.
But for some reason, a few of my closest friends have had some exceptionally terrible things happen and all I’ve been able to do is dwell on how unfair it all is. Unfair that people have to suffer, unfair that our children need to undergo horrible procedures in order to stay alive or have quality of life. It’s easy to get sucked in. I’m like an emotional sponge - I soak in all that is happening around me and absorb it. Until the weight of the sponge is so heavy I can’t move.
It isn’t something you can just shake off. I think it’s something you learn to grapple with as you get older, wiser and more experienced. I’ve been too low to even have my phone counselling sessions (mainly because I find being on the phone hard and much prefer face to face - again, the pandemic forcing it’s way in and disrupting us).
Often when down, I will turn to social media. Cute dog videos, funny cats, silly existential memes (that probably cause concern to various folks who don’t get my humour!). The problem with social media is the constant barrage of political posts and news articles.
In normal life, I would find myself contacting organisations campaigning for accessible changing places facilities to be installed. I’d be signing petitions for more recognition of parent carers. I’d be trying to change the world in my own little way. I bounce between “I’m only one person, I can’t change the world” to “I might not be able to change the world, but if I can change it for one person then I’ve done my job”.
Lately those feelings have diminished and I find myself thinking “wow, if people can’t even have a socially distanced trip to the beach without taking their rubbish home, what chance do we have in making the world a better place for our children with disabilities”. I find myself getting so angry about it. How can people have the gaul to visit a beauty spot and leave it in a mess?! If they could bring the stuff with them surely they can leave with it too until they find a place to dispose of it? I felt sick seeing some of the pictures of packed beaches. Or the waste left behind from illegal raves in our area.
An important person in my life once said to me “you are wasting precious energy resources on things that you can’t fix”. It’s hard to choose where your energy goes. But she was right. And it would account for the feelings of exhaustion, fatigue, sadness, general lethargy that I feel at the moment.
So, I know this post hasn’t been the uplifting morale boost I was hoping to deliver, but I thought I could offer a few little pointers that hopefully I can listen to as well.
You might feel trapped and isolated. Reach out. There are others like you and you are not alone.
Things will get better. You might feel hopeless. But there’s always hope. Cheesy as it sounds. We will hopefully look back on this a year from now and be so much more grateful for those simple things we have missed.
You are not your situation. You may face some pretty distressing daily challenges that would leave anyone reeling. Remember that you are a person too, with interests, and hobbies and likes. It’s easier said than done but if you can catch any moment to stop being selfless, then grab it. These little nuggets of sanity will hopefully restore you and remind you that you are more than mum, dad, carer, whatever.
The world is indeed an awful place at times, where inexplicably unfair things happen all of the time. Be there for others, just sit with them in their grief, be present and listen.
Think every day about what you are grateful for. Sometimes it can feel like groundhog day but I like to remember that first coffee of the day, that evening cuddle with the dog, every smile my daughter gives us.
I find myself in any spare moment wanting to get back into bed. I am aware this is a dangerous path so am trying my best to keep active.
When life gives you onions. You don’t have to have onionade. Maybe look up a cool new chilli recipe. There’s more you can do with what life throws at you and whilst it may temporarily knock you down, you’ll figure out what to do with it and what works for you. And if anything else - this post includes a photo of an alpaca, and how great are they!?