Hi there! I’m Emma. I’m the shit-head in the picture.
A picture can say so much about a person, whilst also saying nothing. Well, nothing in this case other than: I clearly like lipstick and poo hats. So, now we’ve established how tasteful and stylish I am, allow me to tell you a bit about myself.
I was hidden away from the world, housebound, and unable to care for myself independently for 3 years due to having severe cases of two chronic illnesses: Postural Orthostatic Tachycardia Syndrome (POTS for short – a type of dysautonomia) and Myalgic Encephalomyelitis (ME for short – a complex multi-system disease with a wide range of disabling symptoms). ME is sometimes referred to as chronic fatigue syndrome/CFS. Personally, I can’t stand that name as it sounds a bit like ‘Very Tired Syndrome’ – which completely undermines the seriousness and complexities of the condition.
Needless to say, being housebound, dependent on others, and so unwell for so long was very isolating and at times, lonely. I had to cope with a lot during that time – the loss of everything I enjoyed, like my career (which I had worked really hard for), exercising (I had been a gym-junkie for many years), socialising (which I loved) – and essentially, the loss of my identity. I was no longer an active member of society; I was invisible to the world outside my home.
I wasn’t well enough to blog about it at the time, but I often thought about whether I could one day. Now, 5 years on, I’m happy to say my condition is much improved, albeit I’m still sick (what with it being chronic and all), and I am finally well enough to write about my experiences. As such, this blog is partly a tribute to my sicker self during the housebound years; making myself ‘seen’ if you will, albeit in retrospect. Doing something proactive now feels better than continuing to feel invisible and disconnected from society when I look back at that time in my life. It will also serve as a place for me to record my journey since then, through to my (thankfully, visible again) present day.
I’ve never done anything like this before. I did a brief scan of what other chronic illness bloggers write about, and fuck me, they’re good. It’s overwhelming how much sophistication and class these people have. Not to mention how helpful and inspirational they are. Genuinely. So much so, that I had to stop reading because it almost put me off trying to set up my own blog. Almost. But I’m not that easily defeated, and I do believe that what I have to say also holds value for anyone currently suffering a sense of disconnect from the world due to chronic illness. If sharing my story and what I’ve learned (and not learned) along the way can help one person to feel even just a tiny bit more connected, less alone and/or normal in what they are going through, then it will be worth it. Therefore, I’ve decided to pull on my ‘big girl’ pants and give this blogging malarkey a go.
SOME THINGS TO KNOW ABOUT ME:
- I am neither sophisticated nor classy. You may have guessed this already.
- I am, however, honest and kind, and my intentions for this blog come from a good place, born out of my own experiences of mild through to severe chronic illness. A place of empathy, encouragement, humour and hope, with a sprinkling of compassion… and a pinch of profanity.
- I have a BSc in Psychology and a MSc in Psychological Research Methods. I was working as an Assistant Clinical Psychologist and pursuing a position on a doctorate course in my quest for a career as a qualified Clinical Psychologist, when I became seriously unwell in March 2017. I have been too unwell to work ever since.
- I like to write. I find it cathartic. I kept a journal during the first year of my decline, as I searched relentlessly for a diagnosis and treatment – and some understanding of what the hell was happening to me. I then stopped writing for a few years as I became too severely unwell when I fell pregnant (and beyond). This has gradually been rectified as my health slowly improved after finding the right combination of medications to help manage my POTS. I may refer back to my journal in some posts, to remind me of the ever-present raw feelings that have sailed alongside me through the eye of the storm.
- I am a stay-at-home mum to one beautiful little boy, who makes me smile every single day. He is my best buddy. We enjoy going for walks in the countryside, playing in the park, socialising, baking (we are both beginners in the kitchen – I pretend to know what I’m doing, he believes me, and it usually works out vaguely edible), and laughing at the many different types of farts that Alexa has to offer. We do these things as and when my health allows, and my son understands that Mummy needs to rest a lot in between.
- I have a very supportive family and a fiancé named Pete. He also understands that I need to rest a lot. Likewise, he understands that despite my illnesses, I am still human, and sometimes when I ask him to do something for me, it’s not always because I’m too ill to do it for myself. Like when I ask him to feed me grapes and fan me with a massive feather. He is yet to ever do this, but a girl lives in hope.
- I am British. For any non-Brits, I hope this goes some way towards explaining my sense of humour and some of my strange expressions.
MY AIMS FOR THIS BLOG ARE TO:
- Share my day-to-day experiences with POTS and ME, both past (when I was severe) and now.
- I hope that in doing so, I will bring a sense of belonging to other chronic illness sufferers going through the same things I have, and if I happen to inspire anyone to keep on keeping on, then fantastic.
- I will try to address the ugliness of chronic illness with relative lightness, because really, it’s depressing enough without reading a depressing blog about it on top.
- I also hope I will raise awareness for anyone who stumbles upon this blog, be it deliberately or accidentally, and wishes to increase their understanding of living with chronic illness.
For me, finding reasons to smile has been pretty compulsory for getting through the shit-show of chronic illness. And it is a shit-show. I have been very lucky to have an amazing support system behind me. I know that many aren’t so lucky. Being sick all the time is chronic and crap… but I still have plenty of things to be happy about. My life is therefore, chronically craptastic. If you’re still with me, then thank you for reading – and please feel free to take a look at my other posts.