For #MEawarenessHour this week I wanted to address something that happens a lot: getting asked how I am. The answers I give are simple & often given to avoid embarrassing the asker, but I realised today that sometimes honesty is better. So here's Hugh's guide to how I am doing:

"I am fine"
This means I am at my normal baseline level of fatigue, pain and 'malaise'. E.g. I could close my eyes and sleep for another few hours, my legs are sore but it's manageable & I feel a bit weird but I am functional. It doesn't actually mean I am fine.

"I am feeling a little weary today"
Even though I slept for 9 hours I really shouldn't have left my bed. I am struggling to walk, my brain is going slowly & anything I do today will be paid for tonight and/or tomorrow.

"I am a little sore"
My legs haven't stopped aching all night and my feet feel like I have been walking barefoot for a week. As a result I can't stand for very long and I can't really concentrate on anything else right now.

"I am not feeling very well today"
I actually feel so tired that I feel sick. Every movement makes it worse. Even talking. I can't seem to get enough oxygen and my muscles are shaking, even the ones I haven't used. I can't get myself out of a chair & contemplating stairs is scary

So, if I give you one of these responses & your reply is "so am I" but the explanations above don't fit what you're experiencing, I am going to feel somewhat frustrated. Welcome to living with (moderate) #MECFS

BTW, the reason I often give these responses (rather than the full explanation) is because I have been told to "cheer up" or been on the receiving end of "wow, that's depressing" or (somehow worse) "I don't know what to say to that."

And also, "so am I" when that person is on their way home after playing five-a-side football (I have had to give up all sports, including karate, running, cycling, swimming & playing volleyball in a top national league side)

But, as I said, today I understood that my responses are a little dishonest & misleading. So, as an early new year's resolution, I will endeavour to be more honest about how I am feeling when I am asked.

(and because I forgot for all except my first tweet, here's another #MEawarenessHour to add to the pile)