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Thursday, 11 June 2015

'Payback' or Post Exertion Malaise

Hello!

Well, there are 36 days left!! So much has happened in the past 11 months, Foggy (and Sally's) heads are spinning in the whirlwind! Foggy starts the long trek back from the Philippines now; he'll soon be back in the UK. In the meantime Sally has written a blog for you all to read.

Hi,

This blog is about something every M.E. sufferer will be able to relate to. We call it 'Payback' but doctors call it post-exertion malaise. Essentially, it's when the body pays you back/tells you off/chastises you for doing something even remotely interesting or out of your usual routine. Any additional exertion sends M.E. affected bodies into hyperdrive and causes all consuming flare ups of symptoms.

I can usually predict when my payback will come and occasionally take time off work to allow for it. It's a waste of holiday time but makes my life so much easier to cope with. PJ day anyone?! My own personal payback occurs 2 days after any event. This is a pain! If I have an enjoyable Saturday I will ALWAYS be feeling dreadful on the Monday...in work. Now, I'm not talking about partying until 3 am, going to the gym or spending the whole day shopping with friends. The 'event' could be something as basic as spending a little too long out grocery shopping or visiting family and sitting/chatting in their living room.

To demonstrate what I mean I will talk about yesterday and today. It is a busy week for my family as my mum retires on Friday, and we have a number of parties and presentations to go to. Yesterday was the first of them. So, I worked in the morning and made my way to where my mum's presentation was being held. Mingling was required, which of course means standing up. I was stood up for around and hour and a half. At the time I didn't feel unwell; probably because I was enjoying myself! After everyone had left we made our way to a bar and enjoyed a few lovely cocktails before enjoying a celebratory meal. Half way through the meal I began to feel my energy slipping away. The best way to explain this feeling to a non sufferer is to say that it felt as if the plug had been taken out of my energy sink and the energy drained away down the plughole. We went home and within 5 minutes I was in my pj's, chilling out in front of the TV. I was laying on my bed by 8pm and shivering very badly, so much so my teeth were chattering. I was asleep by 10 - hardly a late night. 

I was expecting to feel fine today, as I have already said, my payback usually occurs day 2 post exertion. However, today, I felt tired as soon as I woke up and went downhill from there (doesn't bode well for tomorrow!!). I have had dead legs, brain fog, slurred speech, sore throat, flu symptoms and overwhelming tiredness all day, the severity was at least 3 times my usual daily level. For once, someone commented on my M.E. today. They told me I looked like **** and said they could tell I was feeling poorly. It was actually nice for someone to notice! I feel as if I have dragged myself from A-Z today. I have also been feeling sorry for myself; par for the course unfortunately. I want to be able to live my life and M.E. is stopping me from doing that to the best of my ability. Unfortunately, the next 5 weeks is going to be full of various events and 'payback' is going to be horrible....just means I have to make sure the 'event' is definitely worth feeling ill for! Oh the pressure!

Love,

Sally xx


6 comments:

  1. I'm sorry that you are dealing with severe payback. I can relate to everything you said. I recently saw a new doctor and I could tell by her questions that she wondered if I was exhausted because of depression... sigh. Unless someone has ME or a thorough understanding of it, they simply don't understand how doing something fun can be bad for us. But exertion is exertion; ME-CFS doesn't care whether it's fun or not. Please take care of yourself and PLEASE try not to overdo it (I know, easier said than done).

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  2. hmmyeah that's recurrent EBV for ya ;/

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  3. whoops and forgot to ask how Foggy is doing! not travelsick yet? ;-)

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    1. No, Foggy is fit and well...his paws are getting a little bit tired now though

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  4. Like you my payback is 48 hours later. For me, I have the added worry that each payback can potentially carry a sting in its tail - it can permanently lower my ability level.
    I find that rest in the 24 hours after the event (no matter if I am still feeling "well") is very important.
    Great blog!

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    1. You have great wisdom my friend 😊. My energy reserves are so low that it feels impossible for me not to over-extend myself. My stepson was visiting this weekend. I did really well the first day he was here. Then, this evening, while already feeling quite weak, launched into a 45 minute philosophical debate (which normally I would have loved)! I knew I was talking too much but just kept going...sigh. When will I learn?? LOL

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