My story: going through perimenopause as a carer

Tova Gillespie is a 46-year-old single mum to Alice and Elin, who has severe disabilities and complex medical needs.

Here, she shares the moment she realised she was perimenopausal, and of the importance of looking your own health when you have caring responsibilities.

‘Ten years ago, I was pregnant with my first child.

‘I didn’t enjoy my pregnancy: the truth is I hated every minute about it, apart from feeling the baby move. I was in extreme pain with my hips, and I suffered with mood swings and fatigue.

‘When I was 10 days past my due date, I went into hospital with reduced foetal movement and from there everything went wrong. My daughter Elin was delivered by emergency C-section, and her lungs were full of meconium.

‘As a result, Elin suffered severe brain damage from oxygen depravation and now has quadriplegic cerebral palsy, complex medical needs and severe developmental delay. She needs care with everything in her life and she is frequently hospitalised due to seizures, as well as a number of necessary surgical interventions. 

‘I now have a second daughter Alice, who does not have any disabilities, and I am a single, working mum. I advocate for and support the special needs community through my YouTube channel called ParentXP, where I share the ups and downs of life with a complex needs child. I have a fantastic community of special needs families around me and receive a lot of support through a local charity, Bedford and District Cerebral Palsy Society.

Learning about the perimenopause

‘About a year ago, the charity arranged a talk by a menopause expert exclusively for us special needs mums. It was a real eye opener for me. Before that presentation, I hadn’t heard the word perimenopause and I knew very little about this period of a woman’s life, except that I could expect hot flushes and eventually my periods would stop. Yet here was an expert reeling off a long list of potential symptoms I never would have linked to the perimenopause or menopause.

‘Until then, I’d put down my symptoms to the daily challenges of life with a young child who needs care with everything – the constant manual handling, and the stress, with a hefty dose of anxiety and worry thrown in the mix.

‘Of course, I am anxious: I live on high alert for seizures and other reasons my daughter may need to go to hospital. Of course, I have joint and muscle pain, I have a ten-year-old who I lift, dress, change, feed, push a heavy wheelchair etc. And let’s not talk about sleep. What sleep? I am a carer through the night as well as the day. The night sweats I’d been experiencing couldn’t be explained away by the realities of being a special needs mum, but everything else had a logical explanation.

‘That day stayed with me though, and ever so slowly I started putting two and two together. I was recovering from burnout following my separation from my husband and being made redundant from my high-powered city job. I struggled with depression and my anxiety was through the roof. And suddenly, a few months ago, I saw a sudden increase in my brain fog, anxiety and rage.

My perimenopause lightbulb moment

‘The rage was the thing that finally made the penny drop.  This wasn’t just the effects of day-to-day life, this was something more, it went out over my children, and I needed help.

‘A friend of mine had just started HRT for her perimenopause, and when she told me about her own feelings of rage, I felt such recognition and relief. I called my GP surgery the next day, asked for an appointment, and at that appointment was prescribed HRT.

Caring for yourself, as well as others

‘When you care for others, especially someone who is completely dependent on you, it’s all too easy to forget to care for yourself.

‘And I am not talking about the bubble bath with a glass of prosecco kind of self-care here, but a tendency to dismiss and diminish our own health concerns, just as I did.

‘It can even go so far as gaslighting ourselves, questioning symptoms and whether they really are worth being concerned over, and whether someone else isn’t feeling a lot worse and so we shouldn’t make a fuss.

‘And often we have nothing left in the tank for ourselves: everything has gone on looking after someone else. I can call all the doctors in the world for the sake of my daughter, yet I’m too exhausted to call one for myself.

‘This is why having a network of support and help is so important. You can’t pour from an empty cup, everyone tells me. Well, sometimes I need someone to come and fill that cup up for me. That menopause presentation I attended did that. My friend sharing her experience did that. The stories here on balance keep doing that.

‘And that’s why I share my story, in the hope that what I share will help someone else. If you join me on YouTube, you can watch videos where I talk about my perimenopause journey; symptoms, treatment and what I learn along the way, but also the impact this part of my life has on my family.

‘Life, particularly midlife, is hard enough as it is. Together we can encourage and support each other through the challenges and look for the good bits.’

You can follow Tova and ParentXp on YouTube, Instagram and Facebook.