Overnight my blog received its 1 millionth visitor. It’s gobsmacking to me. Seriously gobsmacking. Here I am in the middle of nowhere, surrounded by sheep and farmers, spending 17 hours of every day in bed feeling like road kill and over a million people have read something I’ve written, including someone from Vatican City and one of the world’s leading MCAD doctors. Mind-seriously-blown.
I started my blog because I felt like I was the only person in the world to be diagnosed with not only M.E., but also hEDS, HIT and MCAD. I had no clue there were thousands of other disease-triad sufferers out there and finding you all has helped me feel less alone. And there have been many times that I have felt utterly, utterly alone not least because I’ve lived on my own since I developed ME back in 1994 and have never had anyone to care for me no matter how sick I’ve ever been.
My blog has always been a bit like an online diary – a place where I could offload because in real life I had no-one to offload to. I include information on my diseases I’ve found along the way which I hope you’ve all found useful, but in essence my blog is written for me. The fact that anyone ever bothers to read about my shitty life and my even shittier illnesses is simply the icing on the cake 🙂
I know I’m not everyone’s cup of tea. I loathe when people come on my blog and tell me I should be doing this, or I should be doing that – unless you have access to my medical records and are menopausal, 51, have M.E., HIT, MCAD, hEDS, Endometriosis, Adenomyosis, Polycystic ovaries and severe migraine disorder for over a quarter of a century you and I are not the same and you have no clue what I should, or should not, be taking, eating or doing. So I know I get tetchy with some of my visitors but that’s because they’re giving me advice that I absolutely did not ask for.
It’s also been levelled at me that I don’t like anyone to disagree with me. Quite correct. It’s like reading someone’s diary and disagreeing with their thoughts because they’re not the thoughts that you have. I can think and feel any fucking way I like and just because it’s not how someone else might think and feel doesn’t make it wrong. I wish more people got that and gave each other space to express their own unique and individual opinions and thoughts without feeling the need to constantly challenge them with a “yes, but……”. These days, if someone writes a comment that starts off evenly remotely negative I simply don’t read it.
My blog has evolved just as I have evolved. My knowledge has changed and grown over time and I think differently about many things in 2019 than I did back in 2013 when I was newly diagnosed. I don’t pretend to know everything about everything. I know enough to manage my diseases and that’s all. Having said that, I’ve survived meningitis, cheated death twice, got back on my feet after being bedridden for a decade, fought for my hEDS and MCAD diagnoses when they were relatively unknown illnesses, survived countless anaphylaxis attacks and am fit enough to do a hobby I love, to live independently and to occasionally walk my lovely little dog – and all without any knowledge of genetic mutations and methylation cycles not to mention eating gluten, sugar and dairy every day of my life alongside Pringles, Starburst and a few gallons of tea 😉 However incorrectly some people think I’m living my life I’m obviously doing something right, for me at any rate.
Blogging so openly and publicly about your life is not for the faint hearted. You make yourself vulnerable to spammers, stalkers, weirdos, the angry, the depressed, the dismissive, the judgemental, the just plain nosey and the downright bloody rude. But in return you also open your life to friendship, support, knowledge, encouragement, understanding and laughter – and it’s that which keeps me going 🙂
Thanks to you all for caring about me and my struggle. For sharing in my journey and for sharing yours with me. You’re one in a million and I am thankful for you.