I was stopped by a gentleman in a coffee shop yesterday as I went to do a half-day shift reporting for ITV News.
“It’s brilliant to see you up and about and looking so well.”
I made my usual joke about wearing make-up on TV, but then got into a reasonably serious conversation to explain how I’d spent three days of the past week mainly in bed.
Today is another one of those days. I woke early this morning, around 4am, and spent til 8am on the sofa listening to podcasts. But, since then, I’ve been back in bed dozing on and off – generally wiped out.
It’s a gorgeous sunny day out there but I need the curtains closed and any stimuli ‘turned down’. I’ve just put the radio on, nice and quiet, and I’m laid in bed typing this blog post slowly onto my phone.
I thought it may be helpful to plot the good and not so good days of my week:
Sunday – out for breakfast, an afternoon and evening in bed
Monday – in bed all day
Tuesday – up and around in the morning, on the sofa for the afternoon and evening
Wednesday – a day at work
Thursday – a gentle morning, a coffee with a friend, an afternoon in bed
Friday – a coffee with a friend, a morning on the sofa, an afternoon at work
Saturday – in bed
This isn’t a pity party blog. It’s simply a rough sketch of the week just gone. And it’s fine. I’ve spent time with my husband. I’ve seen a couple of people for a cuppa and a natter. I’ve done a day and a half at work.
But I thought it worth sharing the other side of the smiley face I often show on TV and social media – and that it’s important to me to continually listen to my body to manage the symptoms of my ME.
This is Zonked Club 
Thank you Gary. I struggle through working days too and although I love my job it is pure torture getting through each day. Make up and a smiley face masks the reality. Thank you for sharing your feelings, it really helps.😊
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I love this post. It explains in easy to understand terms, the amount of rest we need to appear “normal” and partake in “normal” activities, albeit limited.
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Thanks so much for this, so relate to this…..was explaining to a friend recently how the “snapshot” of the hour or two when I’m with her or doing a chosen activity is not representative of how I am.in general. For those couple of hours I will need about 2 days of complete rest….and even then feel under par ALL.THE.TIME!!! take care of yourself and thanku again for using precious energy stores to share this with us. Xx
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I have been to my sons retirement from the Army celebrations over the weekend probably stay in bed now recovering
It’s so hard when people say to you you look so well , they really don’t understand
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I spent a few years like that Gary working part time bed days off Tuesday and Thursday’s and Saturdays and Sunday’s maybe getting some food shopping no time. For friends little for family then two years ago unable to get up three weeks my condition deteriorated severely now have mobility and daily living struggles and have probably caused irreversible damage now spend 16 to 18 hrs in bed only go out 2 hrs once a week if well enough what a life but I’m still smiling as little things like being able to wash and dress myself may be a massive struggle and use all my energy but it’s my daily goal and dosent matter if it doesn’t happen I’m not guilty for letting my body repair I enjoy reading and listening to your roadshow
Thankyou
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Hi Gary, thank you for sharing that with everyone. I wish more healthy people could read that to get some idea of what a person with M.E. has to do to have some semblance of normality in their lives. And if only the people who say “you look so well” could see us when we are crumpled in bed, in pain and feeling awful but we all put our game face on so I guess you can’t blame them, but sometimes it makes you feel like a fraud when you say that you are really ill. Still I suppose it is marginally better that everyone saying to you that you look dreadful 😃! Take care Gary and keep fighting on. X
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That is the difficult side of the illness. People often tell me how well I look and see me for a fraction of the time. They never see the frequent days I need to stay in bed or where I am at work or busy but feeling absolutely dreadful due to my symptoms. Thanks for sharing your experience as it definitely makes others like myself feel less isolated 😊
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Dear Gary,
Have just read’ A week with ME and me’ having pulled out of a family birthday celebration this evening following a horrible week of back pain. I’d rested as much was able this week but am in too much pain. I had my sensible head on making this decision but it doesn’t stop the heartache.
Thank you so much for sharing your life with ME, it makes all the difference knowing there are so many of us in the same boat ( strange analogy that a sinking ship comes to mind!!)
Best wishes
Jane
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Please do not say, “you do look well”,
it puts us in a huff.
In fact we feel quite wretched,
and really pretty rough.
Perhaps just say “I understand,
you’re having a hard time”.
Be kind, be gentle,
and if you spot a sign
that we are flagging when we talk,
say, “won’t tax you more, I’ll walk”.
It’s so exhausting to explain
that every little move
Can make us ill, in pain,
and not improve our mood.
We love to see you, love to chat
for little moments, true,
but please allow, we are not ‘well’,
and really that is that.
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grateful for this post
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