9 Comments

  1. Hi Gary, congrats on your impending nuptuals. I got married 5 years ago. I’m afraid I copped out and did not have any evening celebrations as I figured that the ceremony, meal, photos would be as much as I could cope with (it was), but you’re right, you will get through it all on adrenaline. The rests between activities may help. The most useful thing will be to plan nothing at all for the weeks after and, yes, don’t beat yoursef up for deciding to look after yourself first.

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  2. Hi Gary, thank you for sharing this, I have also been ‘pacing’ not that it had a name! I have always been keen to see and read others stories, it makes you realise you’re not alone in this journey. I did notice you spoke a fair bit about coffee and I just wanted to give you my experience. Unfortunately I lived in a high paced lifestyle for 4 years and caffeine played a big part in that, day in day out. I crashed massively last January and realised that the caffeine was actually masking the symptoms, but the moment I became intolerant to it, and stopped drinking it, that is when the crash happened. You may be fine but I didn’t know if you were aware of the amount of stimulation caffeine has on your somewhat ‘frazzled’ nervous system. I hope you see this as helpful and not me having a go. Keep doing what you are doing. Enjoy your wedding 😊

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  3. I was thinking you said you just became sick about a year ago? Was that right or maybe I just thought I read that. Anyway, if so you are amazing in what all you have figured out that is helpful, like pacing. It took me several years to just know I had to even though I still suck at it I know I have to or will pay dearly. I really hope your wedding goes well and somehow your energy levels will stay up and that you don’t have a bad time of it after. I’m very excited for you.

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    1. Thanks so much, Gloria. Yes, it all started at the end of 2016 but I ground to a halt a year ago in Jan 2017. It’s been quite a year and I’m still learning lots. I’ve come to the conclusion we each need to become our own specialists to manage this cruel illness. Take care.

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  4. I love this vlog! I’ve had ME for about 22 years and been pacing for 20 years but have never thought about categorising things in my diary as L/M/H – that’s a great idea! I now have mild/moderate ME but am finding it very unstable and all over the place despite pacing as much as I can so I’m definitely going to try and give each activity an energy rating and put it on paper as I guess to do this in my head but it will be so much easier to track on paper.
    Good luck with your wedding – complete rest the week before will definitely help and so will the Adrenalin on the day but I’m sure you will manage to relax and rest on your honeymoon – I hope you are going somewhere warm as I find that always helps my symptoms too.
    Thanks again for all the awareness raising you are doing and for all your tips – it’s great just knowing other people are the same 😊

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