I’m sorry I haven’t been keeping this blog up to date, but I was ill over Christmas. My first priority is to wish you all a happy and healthy 2010.

The thing that’s prompted me to write on here is a poll on the Daily Mail website entitled: Is ME A Genuine Illness? Readers of the site are invited to select Yes or No. I’m not only incensed about the callous poll, but about the caustic comments left by some people following various articles on the topic.

So people don’t understand ME? Neither do we and we suffer the day to day (or hour to hour) effects. Neither do the doctors. Just because we don’t understand something, must we dismiss it as false? I would never be so arrogant.

It was the Press themselves who created this stigma for ME sufferers. It began in the 80s (when I was first diagnosed) and they coined the term Yuppie ‘Flu’. Since then, the Press has continued to paint a negative view of those who have to live with a condition that can neither be treated nor explained. Some of the comments left state that they saw someone from ME doing chores or going shopping. How dare they? I, like many other sufferers, often hide how I am feeling in order to maintain some level of normality. Only close family and my dr saw me at my worst because I don’t WANT people to think of me as fragile or incapable. I still have my pride. 90% of my life is spent at home.

There are always going to be people who abuse the term or are misdiagnosed (and recover miraculously) or self-diagnose; this happens with many conditions. Don’t take it as red that someone who has ME is one of those people who simply doesn’t want to work. Most of the people I know who have the condition have lost a lot: jobs, friends, homes, marriages, social lives, etc. We try to do what we can, when we can DESPITE M.E., rather than use it as an excuse to do nothing.

Someone suggested that ME sufferers just whinge all the time: why would we if there was nothing wrong with us? Touche!

I could rant for ages but, ironically, I’m too tired. I actually had an update about my writing but that will have to wait!

I know I haven’t posted for ages, but I was hoping to do something with this out-of-date website. As you can tell, nothing’s happened with it.

I’ll let you know what’s been happening: I spent a LONG time contributing to an interview that was to be featured in Psychologies magazine in their January 2010 issue (out now). It was all about teenage diaries (like in Karma) and how it felt to re-read them. It was also about how things had changed and what the person you were then would think of the current you. I did a telephone interview and many email follow-ups. It was quite emotionally exhausting to revisit the past, discussin things like my ME/CFS and my enforced changes in career. The journalist told me I the mag would send someone to get my photo (if they wanted one) but lady from Psychologies emailed me to ask about me coming to London for a photoshoot. Obviously, this was out of the question. I explained that it would be a 3.5 hour journey there and a 3.5 hour journey back (that was just the train part of the journey) - I wouldn’t have been able to function at an afternoon photoshoot. They came back to me and said they’d arrange travel for me and there’d be somewhere I could ‘rest’. Still no go, so they relented and said they’d send a photographer and a hair stylist to me. Yay! I wouldn’t miss out!

They said they’d be in touch about the shoot, so I curtailed my activity (basic though it is) so that I could participate fully in the photoshoot. I waited and waited. Eventually, I emailed the journalist, who didn’t even reply to me. A few more weeks went by, and I realised that they probably weren’t going to get in touch. I emailed the Psychologies lady, saying, “Have I been dropped from the article due to my ME/CFS?” The only response were the following words, “Yes. Sorry.” She didn’t even address me by name. It made me feel bitter, as they’d always been aware that I had the condition. Perhaps if they’d even contacted me, so that I wasn’t resting up ALL November…

Speaking of disappointment, I’ve heard a lot of people talking about Gumtree, so when I decided to sell my netbook (barely used it, despite thinking I’d take it everywhere and write every day) I posted an ad. Within a few hours, several people had already decided to try and relieve me of my netbook in a non-legal way. Fortunately, I’m quite savvy to various scams, and didn’t fall for them. However, it has made me very cynical about selling on the internet (ok, MORE cynical).

As for the writing, what writing? A New Year’s resolution? Thought I’d made some progress in getting paid by Discovered Authors (almost 3 years since Karma came out and they still haven’t managed to pay my meagre royalties). It’s now a principle. Would be nice to get it before Christmas, but I have my doubts.

So, it’s ME/CFS Awareness Day today. Were you aware? I’m disappointed to say that I have seen nothing in the media today about ME (or CFS, the now preferred term for the condition). Surely the entire point of having an Awareness Day is to raise the profile of the condition among people who don’t know about it. Sufferers are well-aware already. Everyday is ME Awareness Day for us, and our families/friends.

It’s ironic that that day seems to be invisible, as that’s how many people discribe the illness: an invisible disability. Look at my gallery, for example: do I look ill to you? No? Yet, some days it is hard just to get out of bed. Some days it is hard to hold a conversation. Some days are just plain hard. However, some hours are fun. Even knowing that you will ‘pay’ for those hours, they are still worth while. Our lives are one long balancing act: balancing rest and activity; balancing rest and too much rest; balancing need for company and need for solitude; trying to be ‘normal’ while trying to get people to recognise that we don’t feel ‘normal’.

A difficult thing to take is the misconception that ME/CFS tiredness is like being tired. It is not. It is an, often overwhelming, physical and mental fatigue that will not be helped by a nap, pulling ourselves together, or getting some exercise/fresh air. It can be exacerbated by activity, but is not necessarily in proportion to that activity. It is unpredictable, making it difficult to make plans, and making it difficult to socialise (although the internet has been a Godsend in this respect). There are other physical symptoms that sufferers experience to a lesser or greater degree - perhaps this is one of the reasons why we are so disheartened when people describe ME/CFS as a mental illness or liken it to depression. Whose mental state would not be affected if their normal way of life was snatched from them? Anger, frustration and sadness is not the same as depression; depression is a different, and common, condition, which some sufferers do experience.

That’s the way I view the condition, and if you want to chat about it, feel free to join our Facebook group.