4 months agovayu.love
Don't concern yourself with being miss positive. People have this annoying quality of not being able to perceive beyond their own experience. Don't worry about them.
6 months agofreya_mecfs
I find the ups and downs of what you can/can’t manage the hardest part of it. Sending love ❤️
6 months agoaevumplanners
I feel this it’s like what will I wake up to today, this week, or next even hr to hr there is just no consistency other then multiple symptoms
6 months agojulietlockett
This 100%. I was asked by a doctor (nothing to do with ME but isn't everything to do with ME when you have it?) 'what's your baseline energy?' I replied that I didn't have one...every day is different and however much you try to pick it apart and rationalise it there's no rhyme or reason. Always dreading the crash that doesn't improve...terrifying. And people say we have to live in the moment 🤷🏼♀️
6 months agoanna.k.wood
Agh I have this conversation all the time . Mentally it's often easier when I know I can't do a thing, then I don't think about it. But obviously it's nicer to be able to do the thing occasionally
6 months agorecovermovement_
Lovely to hear your voice Rachel. This touches on such a hard thing with the variability in chronic illness. I think it is best to be able to do things sometimes, but it’s such a shame it comes at a cost. Well done and I hope with time you’ll regain your former baseline. You’re doing well to stay positive ❤️
6 months agolearningitsnotlinear
I can absolutely relate to this. I am so, so sorry you’re dealing with these cruel, unspeakably difficult illnesses and the situations they place you in. At one stage, I actually thought it was easier (in some aspects) when I was severe, as the choice was absolutely taken out of my hands. There was no going anywhere or doing anything; I had no choice but to lie there and accept my fate. As you transition to moderate or a little more able, it’s the most difficult trajectory because it’s like someone offering you a chunk of chocolate, and then, before your hand reaches out to grab it, it’s gone. You can smell it and taste it, but you can’t yet eat it. It’s the wanting and knowing you can—but also knowing how harrowing the suffering is that comes thereafter. The to-and-fro between is excruciating because you get a small taste of what life could look like before you’re plummeting down into the darkness again. I am absolutely of the belief that grief and gratitude can coexist, though, and we can live between the two. I am grateful for all I am able to do, yet I have a longing for the parts I can no longer do. I think that’s human, and you need to give yourself a lot of compassion and grace. What you’re enduring is unimaginable to anyone who’s not had firsthand experience, and even then, we all have our own individual journeys. Pour your love into yourself. You’re doing amazing, warrior xoxo
6 months agolisandradez
Totally get this, and I think it's normal, well normal for those of us who are living with ME. I totally understand. Been there so many times!!
6 months agosloth_mecfs
Love your video! Sorry that the lower baseline has been going on for a while. Soooooo hard dealing with the fluctuations and not being able to take anything for granted, and the optimism and disappointments over and over. 🫂
More posts
