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.