How do you stay positive as a disabled carer?
Lewin, Author, Speaker, Young Carers and Disability Awareness Campaigner. I've
been my husband's Carer since 2003 and I have Ehlers-Danlos Syndrome (EDS) and
“I don’t know how you cope!”
“I couldn’t do it!”
“How do you stay so positive?”
If I had a pound for every time I’ve heard these phases I’d be rich now.
My journey of becoming a carer overnight
In truth, I have a myriad of ways I cope which depending on what the day brings. With my husband’s brain illness and brain injury I never know what the day will be like. A seemingly ‘good day’ can turn into a bad one within minutes. Yet I’m so used to dealing with it now, it’s become my norm.
Our children were only five and two years old when he became poorly back in 2002, so they grew up being young carers. Nowadays we share the caring role between my daughter, her fiancé and myself.
However, I’m disabled and so is my daughter. We’ve never had good health, before finally being diagnosed with Ehlers-Danlos Syndrome in 2016, just before my 43rd birthday! In fact, that’s what I’ve always found ironic, my husband was never ill. Never! That’s why it was a real shock to the system when he started with this rare incurable brain illness. How could this be happening? I was the one who had poor health, not him! But this was really happening and overnight I became his carer, at 29 years of age.
Juggling being a carer and staying positive
I became both mum and dad to the children, doing my best to be everything to everyone. This led to me ignoring my own health to a great extent, after all I couldn’t be ill, could I? My family needed me! Maybe if I’d had the diagnosis of EDS back then I’d have taken my health more seriously, but I didn’t know. Eventually my body couldn’t take anymore of me ‘pushing through’ and I became completely disabled by my EDS in 2014. Since then my life has become about balancing my needs with my husband’s needs and learning to say no to people, which isn’t easy when you’ve always been a people pleaser.
In answer to the question ‘How do you stay so positive?’ there are lots of little things we need to do each day. You can’t go from feeling sad and angry to positive just by telling yourself to be positive. It’s much more complicated than that and it’s a gradual process. Firstly, it’s vital that we are kind to ourselves. As carers, that’s easier said than done. All too often we give every ounce of energy to those we care for, leaving precious little for ourselves. Trying to be everything to everyone takes a massive toll on you, both physically and emotionally.
So, how do we get the balance right?
The changes I have made in my life
By making lots of small changes in the way you perceive your life.
Start with appreciation. When we give gratitude either mentally or verbally it creates a vast shift in our perception of life. If you’re struggling to do this, try listing 3 things you’re grateful for each day. You could even think about it as you brush your teeth in a morning. Keep it simple to begin with. If you’re worried about something, redirect your focus to what is working in your life, instead of what isn’t. Whenever I focus on the positives in my life it makes it easier to cope with the negatives.
I rest whenever possible, even if it’s in short bursts, I always put my feet up and put my heat pad on if I can. I sleep as much as possible too, it allows your body to re-charge ready for the next day. It sounds so obvious, but I never respected sleep before I became disabled, and I think that’s true for many carers. We soldier on with little or no sleep, running on empty, when it’s vital to our wellbeing.
The final change I made was meditation. It’s been life changing for me, and I never thought it would help. I also listen to Gabby Bernstein’s spiritual podcasts and read her books.
If you want to follow Victoria’s journey, then you can read her blog. You also can buy her book, ‘Happiness; How to be happier, no matter what’ by Victoria Lewin
So, what small change do you think you can make today to look after yourself? Are there three things you are grateful for? Let us know in the comments below!