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!

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.