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

StarryEyed

Hi. I have peripheral neuropathy in my feet that started in 2011 and has been getting worse overall and since 2-1/2 years ago I can barely stand or walk. The reason for the neuropathy is due to many different illnesses and treatments of those illnesses.

I'm really in a confused state between giving up on getting better and accepting my disability. Can I do both at the same time? Or do I have to choose between the two? I'm trying to do both because there is the smallest chance that I might get better, but I keep getting disappointed when I don't get better, so I'm thinking maybe it's better not to hope. Maybe wanting to get better is a waste of energy. But then I feel like I'm giving up if I don't hope. But maybe giving up is a good thing? Do you have any advice?

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StarryEyed

Yes, it is really, really hard not to give up, @Chris75_ But after 14 years, maybe I'm flogging a dead horse? Maybe I should focus all my energy on adapting? And they feel like opposite feelings in opposite directions (hope and giving up), so it's really confusing. Does that make sense?

Kimi87

I had a choice some years ago, continue unhappily seeking a diagnosis which might never happen, or accept what I've been told and make the best of what I have.

I chose the latter and for me it was the best decision. I've accepted my limits and my focus is on using what I do have in ways that make me happy.

Aids and adaptions enhance life, they save energy you can spend on other fun things and make day to day life much easier.

StarryEyed

@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?

Kimi87

The path I was on wasn't making me happy.

What makes me happy is working with what I do have to the best of my abilities.

StarryEyed

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. ;)

https://youtu.be/naBoj1STVSY?si=vQuF-rBpeJrdLU2H

StarryEyed

@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.

https://youtu.be/xivjxGMbSXg?si=HiMZdSN5uZ24FDNW

Kimi87

I actually never saw accepting my illness as giving up hope, a negative.

I saw it as a positive, using what I had and working with it to build myself a happy life.

StarryEyed

@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.

StarryEyed

I watched an amazing movie last night speaking exactly to what we're talking about here - hope for a cure and acceptance of a disability. It's really thought provoking. It's about a guy dealing with losing his hearing, but can apply to any disability. In case anyone is interested, the movie is called 'Sound of Metal.' Here's more info on IMDb. It's streaming now on Prime.

https://www.imdb.com/title/tt5363618/?ref_=ext_shr

StarryEyed

Hi @Kookee thank you for your kind words. I just wish I hadn't written so much. I'll be more careful in the future. Promise!

I love to hope. Just love it. It's one of my favourite things in life, one of my favourite energies. But it can be very dangerous if it's misplaced hope. And I've lost a lot of time and energy in life on misplaced hope - from relationships, to career, to education, to diets...☺️ So, yeah, I'm a real fan of letting go of hope too, of letting other life energies flow when it's appropriate to let go of hope.

If you don't mind my asking.... Do you hope for a cure for your disability? Do you feel you've accepted your disability?

StarryEyed

P.S. Like @Chris75_ I'm going to lay all my hopes for a cure in the future for other people. Again, thanks for that, Chris. 🙏🏼

Kimi87

100% you can accept something without liking it!

My main condition historically has suffered from a lack of funding and research.

I was proud to take part in a DNA study recently, which hopefully is a step along the road to one day finding effective treatment or even a cure.

The DNA results flagged up several possibilities all of which correspond to symptoms people have been reporting for decades.

I am hopeful for future generations.

StarryEyed

@Kookee I'm in a similar boat with the docs saying some of my symptoms are due to my reaction to childhood trauma. For example, chronic pain is par for the course. So I'm putting a lot of time and energy right now - yet again 👿 - in yet another onion later. I mean, how many onion layers can there be???! Geez! Anyway, that's my lot in life. We all have our cross to bear. The thing is, since I'm not working now as I'm on disability pension (since 2014) I can work through issues at a gentle and slow pace, which is very healthy. At times I even enjoy my therapy, like the jewellery-making meditations I described to you in another thread.

@Kimi87 good for you to take part in the study. I feel grateful for previous work that others have done that helps me now, like patients, families, friends, drug companies, engineers that designed my mobility devices, marketing reps, stores set up to sell all this stuff, authors, movies, songs, forum software engineers, internet developers.... Oh my goodness the list goes on. Maybe that's a thread idea? Who are we grateful for, to have helped us in the here and now? It's an excellent mindfulness exercise 😊

Adrian_Scope

@StarryEyed, that's such a great idea for a thread. When you really start thinking about it, the list of people to be thankful for, especially the unseen ones behind the scenes, can be endless. As you say it's a great mindfulness exercise and would be really interesting. Do you want to start one off?

StarryEyed

@Adrian_Scope why thank you. 🙏🏼☺️ Yes, I would love to. Let me give it a think as to how to do it.

StarryEyed

@Adrian_Scope here is the thread

https://forum.scope.org.uk/discussion/139417/time-travelling-with-mindfulness

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