” If you‘re too tired you just don’t do it – it doesn’t sound like rocket science “

This was a rather impatient comment from a friend.
I was trying to explain to her how difficult it can be to do or complete things with CFS. Not because I wanted to bore her or to get sympathy. I just wanted her to understand why I can’t always manage to do things at times, or need to stop for rests. And crucially why I have often had to cancel arrangements with her after doing too much the day before.

But she couldn’t get this – and I was trying to explain how it is often impossible to tell in advance with CFS what is “too much” until after. Sometimes hours later or more often the next day. Either way too late. And how CFS fluctuates so much therefore can make it very hard (if not impossible) to tell what is going to be “too much” on any particular day.

But I got the impression she was bored and impatient. Hence this comment.
Re the “you just don’t do it . . . “ – gosh, where do I start !

I mean how do you “just not do it” when :

a) In middle of trying to cook dinner : do you just leave it to burn and go to lie down ? Or remove from heat and abandon it half-cooked to just throw out later ? Or are you more likely to push yourself on to try to finish it ? (So you have something to eat !)

b) Driving on a busy road or even motorway – you can’t normally just stop when you feel yourself getting weak . Usually have to keep going on for a bit at least. I mean you want to try to get home.

c) In middle of having a shower : do you just turn off the water and get out to rest maybe half-washed with shampoo still in hair ? Or do you keep under the running water but just stand and rest arms etc for a while ? In which case the water will probably run cold (as not an electric shower).

d) In the middle of a long difficult phone call perhaps with an Indian call-centre : do you just terminate the call mid-conversation and hang up ? Knowing that you will still have to make that call and start all over again. Or do you push on to attempt to complete the issue you have called about ?

e) When an online grocery shopping is delivered : if too tired/weak to put it away – do you just leave it all out in the kitchen ? In which case the frozen stuff will defrost and the fresh stuff may go off if its a hot day. Or do you try to push on to get it all packed away even though energy is poor ?

These are just a tiny amount of examples of day to day difficulties. I can only do my best – but do often end up with that energy “crash” a few hours later or next day. It just isn’t easy – even after all the years I have had CFS.
I just sometimes wish that people would be a bit more patient and try to understand.

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