Introducing, well … me
Hello my lovelies and welcome new subscribers!! I realised that I haven’t introduced myself properly in a very long time, and although you can read about me in the aptly named ‘About Me’ section of the website, I thought it might still be nice to give a little wave and tell you a bit more about myself here too:
My name is Emma. I like cake, writing, online shopping, and a nightly glass of Rioja to keep my sanity intact. I also like swearing. A lot. I have had ME and POTS for over 8 years now, ranging from Severe in the early years, all the way through Moderate and back up to Mild currently. My mornings generally start with bleary eyes, a murderous feeling towards whoever or whatever it is that woke me up and sent my fight or flight system into overdrive, and a general grumble of ‘For Fucks Sake’ as I haul my fatigued arse out of bed, ready for the school run and another day of playing energy fucking roulette.
… As I’m sure you can tell – I’m an absolute delight! A real treat for my darling family. Speaking of whom:
I am wife to Pete, and mum to O, an absolute legend of nearly seven-year-old status. They have both had to adapt their lives on a regular basis to accommodate my ME/POTS, for which I am very grateful.
Like everyone with chronic illness, I used to have a career, hobbies and dreams. I used to be a total gym-junkie; I was one of those weirdos you hear about who hits the gym at 5.30am to get my weight training and cardio endorphins in before going to work. I loved my job as an Assistant Clinical Psychologist in a service for adults with learning disabilities. I busted my ass for two degrees, and had aspirations of being offered a place on the Clinical Psychology doctorate one day, so I could eventually drop the ‘Assistant’ part of my title. I was also a social butterfly and loved meeting up with friends for a good old natter – often with wine. I dreamed of yearly holidays abroad and good books on sandy beaches while handsome foreign men brought me endless top-ups of sangria and lied to me about how beautiful I am.
Then, I rather rudely lost it all in 2017 after becoming seriously unwell with Severe ME/POTS.
Something very wrong
Myself and Pete were in the throes of new love, having only been together 3 months – when it became apparent that something was very wrong. My health quickly deteriorated that year, leaving me unable to live independently anymore. Pete and I had talked about moving in together, and we ended up doing it sooner than planned because of this. As such, Pete quickly became my carer as well as my partner.
Soon, I was housebound – often bedridden, needing an electric wheelchair on the rare occasions I could leave the house (usually for medical appointments). I couldn’t watch TV, or even be in the same room as Pete and his kids talking, because I was too sensitive to the noise. I couldn’t read a book, or message friends (or at least, not often) because my brain had lost the ability to concentrate. My body felt like cement and I was often nauseous.
I spent a lot of time just staring out the window at the world carrying on without me. Actually, that’s a lie; I was actually staring out the window at the brick wall of next doors house, as that was the only view from my bed when I was lying down.
Scream if you wanna go faster
It’s fair to say that life was hard – made even harder by Pete mansplaining to me the best hair washing techniques, as he shampooed my head all wrong on the rare days I was well enough to get in the bath.
… Wouldn’t mind but … Pete is bald.
Pete wasn’t forced into life as my carer though: he was free to leave at any time and my mum would have had me go live with her instead. But he made the choice to stay. And I’m glad he did. We love each other and found joy in just being together. Even though I couldn’t physically speak at times – being together was better than not being together.
Our son O was born during this very difficult time. And no matter how I am feeling – one look at his beautiful face always makes me smile. O doesn’t remember life back then, but he knows that Mummy was very poorly; he’s seen pictures of himself as a baby on my lap in my wheelchair, and with me in bed or on the sofa. And he’s heard the stories. For example:
We had a stairlift fitted, as I could no longer manage the stairs in our house. I’ve told O that this was his very first fairground ride.
‘Scream if you wanna go faster!’
… I mean, we never did go faster. But it makes us chuckle anyway.
And now …
Thankfully, my health has improved dramatically since then and I now consider myself at the Mild end of the M.E spectrum. Or at least, most of the time. It fluctuates. It’s still no picnic at the Mild end, but I am eternally grateful for everything I am now able to do, regardless of how inconsistently. For example, I am now well enough to be the kind of mum I could only dream of being when I was Severe, and I count my blessings every single day for that. Pete and I FINALLY got married last year, after being engaged for what felt like eternity. And I can wash my own hair again and ignore all of Pete’s ‘wisdom’ about how to do it ‘properly.’
Life is still challenging, and my ME/POTS continues to fuck things up on a regular basis – but it’s SO much better than it used to be. There are no words to describe my gratitude for a second chance at having quality of life again, regardless of my limitations.
I think my improvements probably had a lot to do with finally finding the right medication to help manage my POTS. Because once the POTS improved, it then placed less strain on my body – and consequently – my M.E. Or at least, that’s the only plausible explanation I can think of for my improvements. Just like I don’t always know why my health gets worse at times, I also can’t always say for definite why it improves. It’s mostly luck of the draw in the daily game of Energy Roulette.
Finding the light
I’ve learned that writing about my experiences with chronic illness helps me to make sense of them and, where possible, find the light – and ideally humour – in the darkness. And it makes me really happy to know there’s people out there who enjoy reading my ramblings. If I can help even one person to feel more seen, less alone, and more ‘normal’ in what they’re experiencing, then I’ve done what I set out to achieve with this blog. And if the drastic improvements in my health over the years can offer some hope to others that they too might improve – then that’s amazing too.
If you’ve managed to read this far, then thank you!
I hope this intro has given you a better sense of who I am and what my blog is about. You’re all so bloody lovely and I feel very lucky that you’ve chosen to follow me. 🥰
Thank you!
