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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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wow this is getting tough for me

I

Invisible Woman

Senior Member
Messages
1,267
@Johnskip it's a tough time and 3 kids will make it all the harder!

Lots of great input from the folks above.

My tuppence worth: one of the hardest lessons I had to learn was that it actually takes more self discipline to STOP. Seriously. Before I became ill and things weren't going my way, I conformed to our culture and pushed, worked harder, smarter for longer. I was very proud of my discipline and strength (when needed- I had fun too!).

Now, when I stop before I have to, because I know I need to, I pat myself on the back in the same way. For me, psychologically, it's far tougher to stop & much easier to physically to push myself into a crash (let's face it, it doesn't take much).

It also takes time....it's a whole new reality to adjust to. So don't be too hard on yourself.

@Countrygirl - we the Monstrous Women's Regiment (or is that the Regiment for Monstrous Women?) will leave no gal behind. We'll come get ya! My spare room is at your disposal!
 
purrsian

purrsian

Senior Member
Messages
344
I agree with @Invisible Woman , the self discipline and ability to recognise when to stop are important. I find it hard to recognise when I need to stop, but my fiance is excellent at noticing the signs. He notices things like when my eyes are glazed over, I'm sweaty and clammy, pale face, not speaking as clearly or understanding things as well. If you can find someone to help you recognise the signs, it's a great help.

Also, I don't have kids but I've read on here before about people educating their kids about their illness so they understand what's going on a bit more. Nothing too extreme, but just being open with them about what's going on and why mum/dad can't do everything they used to. I think there's a children's book called something along the lines of "Mummy can't dance", it's either related to POTS or CFS, but it's designed to help small kids understand.

Like Invisible Woman says, don't be too hard on yourself (I know it's hard not to be!). And when it does get too hard, we are all here to listen and be there for you :thumbsup:
 
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