If M.E has taught me anything, it’s that time is not a given.
Not because anyone is dying, but because the unpredictable and fluctuating nature of M.E means I never know if I will be well enough to do the same things with O in future years, as I can now. Like going on the Santa Train.
I don’t know how many years I’ll have of O believing in Santa; but what I do know is … it’s not enough.
I couldn’t have predicted getting Severe M.E the first time around – which robbed me of three years of my life. And I can’t predict how long the improvements to my health over the last few years will last.
And that scares the shit out of me.
Fear of relapse. It’s a tricky one to manage. On the one hand, fear of relapse is what drives me to be really careful not to push my body too hard. Yet, on the other hand, fear of relapse is EXACTLY what pushes me to squeeze every drop out of life that I possibly can – while I still can … just in case I can’t in future.
I know the latter is unwise, as that’s precisely the sort of behaviour that could lead to a relapse. But seriously, do I want to look back on my life from my death bed and know I only lived a half-life, and only experienced half the things I wanted to, for fear of a relapse?
No, I don’t.
But on the flip side, do I want to look back on my life and wish I HAD led a half-life, because that would have been more life than I ended up with, as a result of pushing myself too hard and relapsing?
Also, no.
Do I wish I could see into the future, so I could make better decisions now?
Fuck yes.
So, I guess what I’m saying is … I’d like a crystal ball for Christmas please. Ho ho ho.
Large image: O gazing up at Santa. On the Santa Train. That I blatantly wasn’t well enough to go on, but pushed myself to anyway, in case I can’t in future. Because, I wanted to experience the magic of Christmas through O’s eyes; something precious that I will commit to memory for life.
… Unlike my horrific M.E flare up afterwards that nearly had me vomiting in the car, and bedridden upon arriving home; an experience I plan to most definitely erase from memory like a fucking etch-a-sketch.
Merry Christmas and a happy and healthier New Year. Thank you. I discovered your blog about 6-8 weeks ago. Had a bad few months with my ME/CFS July to November(Started after viral Laryngitis November 2006). You have cheered me up no end. I’m pacing better and breaking down tasks but will still push myself beyond for special events. Pink in Hyde Park in London in May, with my 2 daughters, was amazing, but travelling from Wales and 2 nights in Hotel and walking and standing all day on the Saturday was gruelling, painful and exhausting but worth every second of the worst week recovering in ages. Also spend day in Cardiff for Christmas shopping with daughters in December. Worth the post exceptional fatigue and malaise (PEM) for the memories and its a Christmas tradition.
My mood, outlook and cognitive abilities I feel have improved through your positivity and funny rude words and stories.
Attempting long haul travel this year!!! Wish me and my long suffering husband luck
Here’s to 2024 🍸
Hi Karen – Happy New Year! Thank you so much for your really lovely message – it makes me so happy to know my blog has had such a positive effect on you! Glad that you are pacing and breaking down tasks, but also glad you are able to push yourself for those special events. I’m sooooo jealous you’ve seen Pink. I would LOVE to see her. I can totally imagine how hard it must have been on your health though – both at the time AND with the PEM afterwards. I’m still too scared to try a concert, as I know I would struggle too much with all the standing. But hopefully one day (fingers crossed!). Aww, that’s lovely you also managed your Christmas shopping tradition with your daughters. Sometimes it really is worth all the pain, fatigue and PEM when we get such precious memories to keep in return – and the memories your daughters will also get to carry with them as they grow older.
Again, I’m so happy to hear my blog has helped you. I feel like I’ve achieved what I set out to achieve with this blog when I get messages like yours 🙂
Oooh, long haul travel! Exciting! Hope the travel itself isn’t too gruelling, and especially hope you don’t suffer too much PEM while you’re away! Good luck!! 🙂