Giving up on getting better and/or acceptance of disability?

@Chris75_ I'm so sorry you don't have any hope for recovery. So you don't even hope for a new science cure?

@Kimi87 I'm sorry that you had to give up hope, but it's so good to hear that you're adapting. Awesome! I too have stopped seeing specialists as they can't do anything more for me now. What they've said is to contact them if there is a significant change for worse, and that to keep doing my massage and exercises and stay off my feet as much as possible so as to possibly improve or at the least possibly slow down the progression. So I'm just seeing my family doc now. The last time I saw a specialist physician was in Feb 2024. And since then I've done a ton of things to adapt. A ton. And that's why now I'm considering letting go of hope of a cure. Perhaps a cure is just a red herring, meaning a falsehood that only serves as a distraction to keep my eye off adapting. Maybe the false prize is a cure. Maybe the real prize is adapting? It seems that's what you might be saying that you've experienced?

Thank you all so much for opening up about this subject. You're really, really helping me clarify my situation, through trying to understand yours.

@Chris75_ oh I wish they would step up the funding, as I'm sure you do. I can see that your hope would be minimal if nonexistent with little research. I hear, though, that you have hope for the future of upcoming generations. That makes sense to me because what they have now for treatment of illnesses and management of disabilities wasn't always here. So the future may well be different for others. I like that thought, that I can still hope for the next generation. P.S. We have a donkey sanctuary here that's on my bucket list. 😊❤️

@Kimi87 it sounds counterintuitive to say that giving up hope can make you happy. But I totally get it. That makes complete sense to me. Good for you to have arrived to that place. That is encouraging. What would you say was the biggest difference in how you focused on life without hope for a cure?

@Santosha12 I did the same - pushing through for one opinion after another. I'm so sorry that you have long COVID. One of my besties in Canada has it and spends most of the days just sitting in a daze in his armchair. Another one of my besties here has a son who has it, which is tormenting her as a helpless witness. You know there are lots of forums online specifically dedicated to this disease? I love how you have redefined what you hope is, and I think that's the bottom line with all of you - that you have shifted your focus of hope from hoping for a cure for you to hoping to adapt. I really, really like that.

Having pondered all your posts today, I've come to realise why it's so confusing for me to hope for a cure. First of all, I'm trying to put my past life as able bodied into my future life. But I've changed so much emotionally and intellectually through this disability that even if I could walk easily and stand easily again, being able bodied would be different. I really have no idea what it would look like. Or at the most, just a vague idea. So it's really of no use to think about it. Or at least it's not a good idea to make that my focus.

The other thing that has become really clear to me is the danger of building up myself around the hope of getting better. The danger is that eventually what I build will all come crumbling down if I don't get better (which is what I think might actually happening now). So why not prevent that collapse by building a life right now without that hope? The other thing is that I'm making a life with conditions. So when I massage my feet, for example, I am telling my feet to get better and that is why I am massaging them. How about massaging them just for how they are now? When I buy a pair of comfortable orthotic shoes, I say to myself that it's only temporary, and eventually I can buy beautiful shoes again and maybe even heels. How about saying it's okay to not have the shoes I was able to wear in the past, and learn to enjoy the new types of shoes I wear? So I'm living my life on conditions and I'm giving myself conditional love. Yeah. Of course love with conditions is not healthy. So that lightbulb went off today, so thank you for your guidance.

So my focus now is to focus on the here and now, and really put to practice my mindful living, hoping that I can enjoy the here and now with my disabled body, and hoping that maybe, just maybe, I will learn some more ways to adapt to the world as a physically disabled person. I will also focus on letting go of the hope of reclaiming the able-bodied life of my past.

I've been listening to this song on and off the last several years, and it's become more and more a part of my day. It's by Daniel Lanois, called 'Not Fighting Anymore.' BTW, there's a song for everything. ;)

@Santosha12 thank you for your kind words. Mind you, what's articulate to one person isn't to the next. I'm pleased that I make sense to you. But what points I may gain in articulating could be completely lost in points for brevity. 🤭 😁 My oh my that was a long post for this forum! I'm sorry for that. I look forward to your thoughts whenever you're up for it.

(BTW, my writing varies a lot depending on my frame of mind. I have lots of frames of mind. Teehee.)

Good night.

@Kimi87 in my experience having hope in a cure and accepting your illness aren't necessarily mutually exclusive. But if hope is inappropriate, as it is in my case here, then it's a waste of energy and it can even get in the way of acceptance, as I'm describing here.

I've been sick with one illness after another since my teens. Some things have been curable and others not. I am so positively exhausted from constant illnesses that have consumed my life over and over again. Just exhausted. A hamster wheel comes to mind. I've plum run out of ideas.