“You are not negative, ME has thrown something negative at you that you are forced to deal with.”
I’ve been thinking about doing this for a few months now. I’ve wanted to share more about my life with the illness ME, but I wasn’t sure of the best way to do that. Someone suggested a while ago that I start a blog. I ummed and ahhed about it for ages then I eventually floated the idea past a few friends recently and they were encouraging, so, here we are.
A few facts to get you started.
ME stands for Myalgic Encephalomyelitis, it is also sometimes known as Chronic Fatigue Syndrome (CFS). Many people believe that ME and CFS are two different distinct illnesses, and some people believe they are simply different names for the same illness. I don’t know for sure, in fact, I don’t believe anyone knows for sure. However, I personally was diagnosed with Myalgic Encephalomyelitis, so that’s what I call it. ME is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. Defined by the World Health Organisation as neurological, it affects an estimated 250,000 people in the UK, and around 17 million people worldwide. It is classed as a disability under the (UK) Equality Act 2010.
Why I want to do this.
I share articles about ME on Facebook every now and then but I’ve actually shared very little about my own experience. The truth is, no one, apart from maybe my mum and my counsellor knows the true impact that this illness has had on my life. I am still the same person but my
life existence is unrecognisable. I want to inform and educate people, I want them to understand. Without a greater understanding of the true impact of this illness I don’t see how the situation regarding (the lack of) funding and research will ever improve. I wish my illness came with the confidence that there were the funds and the people out there trying to find the cause, a treatment, a cure, but ME research desperately needs investment. It’s mind-boggling that such a debilitating illness that affects so many people is still such a mystery. I figure all I can do is share my experience. Maybe if the people around me know more about ME then the next time they see a petition asking the government for funding they’ll think of me, and sign and share it. Maybe if someone I know is thinking of doing a run for charity they’ll remember my blog posts and consider choosing a ME charity. As long as people know nothing about ME, how can it get the funding that the 17 million sufferers deserve.
I tend to be very private and I don’t like sharing personal stuff on Facebook. I have opened up a bit more recently but I still don’t feel too comfortable doing so. I’m afraid about being seen as overly negative. I also know that no-one has much time for anyone who goes on and on about their illness. Although, thanks to something I posted on Facebook not long ago on this subject a lovely friend responded with “You are not negative, ME has thrown something negative at you that you are forced to deal with.” That made me feel better, she is right of course.
I’ve hidden the true face of my illness. Living with an invisible chronic illness is lonely and isolating. But I fear that if people know/see just how bad it is then they will never want to spend time with me. So when people do see me in person, I pretend. I’m not sure that people truly understand that I am feeling unwell in one way or another ALL THE TIME. But I still want to see my friends and have a social life as much as I always did, so when I’m having a ‘better’ day (and this just means a day that I’m still unwell but less unwell than other days) I pretend for an hour or so. I will suffer afterwards (post-exertional malaise – I’ll write about this in more detail at some point) but often the emotional benefits of human interaction outweigh the ‘payback’.
So, while I desperately want to educate people about this mysterious and misunderstood illness and its impact on my life I also don’t want to shove my illness in peoples faces, or on their Facebook newsfeeds. Hence the blog. I’ll post links on Facebook and Twitter, if you are interested you can follow the link, but if you aren’t then ignore and keep on scrolling. I have various topics in mind to write about, I don’t intend for all the posts to be directly about ME. It does however have such a huge impact on every aspect of my life that it’s hard to avoid completely. For example, my eye-opening experience as a benefits claimant – I wouldn’t have had to claim benefits if I didn’t have ME. My love of music, specifically Icelandic music – listening to music at home is the one interest I have that I can still do with no consequences. My favourite bands and musicians are helping me through this more than they’ll ever know (maybe they will know if I bombard them on Twitter with links to my blog?!).
I don’t know yet how frequently I’ll post. Like I said, I’ll put links on Facebook and Twitter. Otherwise, just check-in every now and then. Thanks.