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TW: Anonymous question from Infobus

This question was submitted for tonight's  Infobus  but really feels it needs it's own post to get the support it deserves and needs. 

If you were the person who submitted this post, please be encouraged to log in, or make an account and use this thread to get support. Heart

 

"I've been dealing with chronic pain for over five years now. In October last year, I suddenly became unable to walk following a procedure that was supposed to reduce my pain. I've been through 3 different hospitals, harassed by my school, shoved between at least twenty different specialists and I'm only getting worse by the day. I've been diagnosed with Complex Regional Pain Syndrome (CRPS) as well as Functional Neurological Disorder (FND). I've lost my social life. I'm a burden on those around me. I'm on my bed 24/7 and can't even pass the time by sleeping because of my pain. At best, I'm lucky to get two hours of sleep a night. I feel as though I'm better off dead. I'll be free of pain and while my family may grieve for me initially, the pain will ease much quicker than the burden my conditions bring to their lives. All of their lives have been turned upside down and it's all my fault yet there's nothing I can do to fix it, other than stop existing. I've tried multiple times to kill myself with no success. What's more, I can't get a bed until June because I'm "not urgent enough" (though I cannot walk at all, let alone stand without crutches and someone holding me for more than a couple of seconds) and by that point, it'll be 8 months since I stopped walking. I fear that even if I get better, my life has been ruined too much for me to be able to pick up the pieces and outweigh the pain with happiness. If that's the case, I would rather  die and not live through any more trouble and pain. I've always hated myself but who knew I would be so weak and pathetic as to lose the ability to do something as simple as walk? I've lost faith in the world and all these so-called, "specialists". It's truely sad when you're forced to learn at such a young age how spiteful and selfish humanity really is. Empathy, basic human decency and morals are a lost art. In any case, my question to you - or rather, consider this a challenge I'm proposing to you: can you perhaps somehow convince me that there's even the slightest point in remaining alive any longer? I'm curious to see your response, as an outsider who knows nothing about me and my case other than what I've told you."

 

 

gina-RO
gina-ROPosted 03-05-2019 08:27 PM

Comments

 
Tiny_leaf
Tiny_leafPosted 04-05-2019 01:14 AM

Hi @Despair.

 

Just so you know, we have an FND awareness thread here https://forums.au.reachout.com/t5/Getting-Help/Functional-Neurological-Disorder-Awareness/m-p/353241#M35957

It was created by @WheresMySquishy (who I've found to be incredibly empathetic, especially with struggles with chronic pain and doctors).

 

I also have a chronic pain condition (but no proper diagnosis, thanks to fun times with mostly useless doctors), but I've been lucky enough to still be able to walk.. The thing is though, it's just that - luck. We don't get to simply choose to be healthy (wouldn't that be great though?), and we didn't choose to have chronic pain. Your abilities are not an indicator of your strength as a person.

 

I know how you feel about doctors... it can be so, so hard to find competent ones, but they do exist. It sucks that it takes so much searching though.... I've taken to using review sites to choose potential doctors, at least then I can weed out some of the more dismissive ones...

 

Also, I truly believe that your death would be more of a burden on your family than your life ever would. 

 

Sometimes illness can't be fixed, which sucks. Sometimes it takes years to get better, and sometimes all that you can do is make the best of it, and use what you're able to do to help cope with what you can't; but it's still possible to have a good life while being ill.

It is true that your life will not be the same as before - because whatever happens you'll come through it stronger, wiser and more resilient than you were before.

 

Anyway, this was way more wordy than I intended..

I really wish you the best though. Please take care.

 
 
gina-RO
gina-ROPosted 06-05-2019 11:47 AM

@Despair,  I just want to add as well, in case you missed it. 

@Bart-Livewire  responded to your post in the live chat on friday - you can read his response here . 

 

I'll post his response here too : 

"Thanks for this last question @gina-RO and the person asking it. It's a tough one, but something many people with chronic illness deal with at some time.

 

I’m sorry to hear about your ill health. Firstly, it’s not your fault. Not one bit. It sounds hugely challenging for you and your family and I won’t suggest for one minute it’s easy or that there’s a formula or something specific that will help. But I can say that I’ve met and worked with many people in similar positions, who felt there was nothing more they could do, or were in such a hard position it was impossible to see any change in the future. But change does come, and I understand it doesn’t come for everyone, but it comes for many and it did come for the patients I’ve just mentioned. I could give you many stories, but I’ll leave you with one. 

I worked with a young girl with major head injuries from a car accident, in which she lost all of her family. She spent over a year in hospital, recovering and with originally no hope. After a huge journey, she left hospital, well and being looked after by distant family, and I’ve seen her since, after visiting hospital two years later and she was happy. I’m sorry I can’t give you much more than that but I think there’s always hope and good luck with your journey."

 
Despair
DespairPosted 03-05-2019 09:07 PM

Person who sent the question speaking - just want to be clear that I am safe. I'm just in a very dark place right now. Feel free to respond if anyone has any coping strategies or something that may help. 

 
 
Taylor-RO
Taylor-ROPosted 03-05-2019 09:46 PM

Hi @Despair, thank you for being so courageous in sharing your story with us. Thank you for creating an account and confirming your safety. The questions that you are asking have no easy or quick answers and are unique for each human. The meaning of life, just like happiness, shifts with time and it is a journey rather than a destination. This sort of answer is unlikely to come from another person but from within. Chronic pain is something that is extremely detrimental to mental health. You have mentioned the incredible toll that this has taken which would be unimaginable for anyone to understand. I imagine that this would leave you feeling quite isolated and that your journey so far has been exhausting and challenging. You must have incredible strength that has carried you this far. It is really easy to lose focus of your recovery but know that in June, you will take a new direction which has unknown and potentially positive outcomes. As you said, June seems so distant and so it may be more helpful to take it day by day and minute by minute if you have to. You mentioned you won't be able to pick up the pieces of your life.. you don't have to, you can leave the broken pieces behind. Every experience we have changes us as a person and we cannot go back. We can only move towards a future based on how we want our life to look like Heart

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