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Something’s not right

Don’t want to accept the pain

creative_writerSenior Contributor05 Feb 2025, 10:09 pm AEDT

Don’t want to accept the pain

Why can’t I pretend the pain isn’t real, maybe if I tell myself I’m okay and I don’t struggle with mental health I’ll be okay. Maybe if I tell myself that the traumatic memories aren’t real, then I can finally feel whole and less gross. Maybe I’ll just wake up from this dream soon and I’ll find peace within my mind when I do wake up. Maybe I’m okay, maybe there isn’t anything wrong with me

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In response to: Don’t want to accept the pain

creative_writerSenior Contributor22 Mar 2025, 7:01 pm AEDT

Re: Don’t want to accept the pain

@Jynx I need to fill my day with more productive activities. I’ve been wanting to listen to more podcast, but then I run out of motivation.

It’s more likely ehlers danlos than not. My doctor suggested seeing an OT and Physio. I’m not entirely sure how you would get diagnosed with ehlers danlos. I’m also not sure if my spine is straight, my top vertebrae leans into the left side of my body. I do get left sided pain on the base of my skull. Like I get none of us are symmetrical, but I don’t know, but is it usually like that?

In response to: Re: Don’t want to accept the pain

JynxModerator22 Mar 2025, 7:40 pm AEDT

Re: Don’t want to accept the pain

@creative_writer maybe sprinkle some lighter/less mentally taxing podcasts into your rotation? Something you don't mind so much if you zone out maybe? I get annoyed when I can't take in information from a podcast and it makes me not wanna listen at all - so I will switch to listening to D&D podcasts which are a lot more silly, and I don't mind so much if I accidentally dissociate and miss a bunch 😅

Hmm.... I dunno for sure, but it's probably worth seeing an ND-friendly physio? I gotta find one for myself too, maybe we're both a bit uneven 😬 I know I never feel quite 'flat' laying on my back. I think cos I can 'lock' my knees it has really done a number on my hips & back 😵

(Also PS, all my ND friends are similar in their ouchies. You're not alone 😉)

In response to: Re: Don’t want to accept the pain

creative_writerSenior Contributor22 Mar 2025, 8:05 pm AEDT

Re: Don’t want to accept the pain

@Jynx maybe I can start in small bouts, the one hour sort of puts me off. I don’t know if I’ll be able to hold my attention for that long and I do really want to learn about the history.

Maybe ND are more likely to be uneven. I actually googled it, apparently ND are more likely to have scoliosis. It can cause one shoulder to be higher and cause a curve. Probably should get it checked.

My dad is uneven, too but he is not hypermobile and he never noticed lol. He went for a test and was told his spine was curved. He does appear to have some ND traits. My mum probably does too. Even my siblings.

I can’t even begin to tell you how many times I’ve injured myself. I’ve ended up with swelling around my joints on multiple occasions. Once my jaw moved out of place and I panicked and moved it back. I do not recommend doing that to anyone, it was probably one of the stupidest things I did. My brain literally stopped working and I was lucky I didn’t cause much damage, my jaw did feel a bit weird afterwards but then returned to normal

In response to: Re: Don’t want to accept the pain

JynxModerator22 Mar 2025, 9:12 pm AEDT

Re: Don’t want to accept the pain

@creative_writer oh yeah deffo break it up into batches!! I don't think I could listen to a whole hour of podcast in one sitting, no way!!

omg that would have been so weeeeird!! Your poor jaw, glad it's ok!! Yeah I just wish that medical science would bloody well catch up and start realising that ND people have different medical needs at times!!

In response to: Re: Don’t want to accept the pain

creative_writerSenior Contributor25 Mar 2025, 7:12 pm AEDT

Re: Don’t want to accept the pain

@Jynx I haven’t been able to do much lately, but I’ve been in pain. We can only do what we can. I’ve been having migraines, neck and back pain along with nausea. I haven’t been on much on the forums because I’ve needed some space.

I hope you are doing well tonight 💖

In response to: Re: Don’t want to accept the pain

JynxModerator25 Mar 2025, 7:28 pm AEDT

Re: Don’t want to accept the pain

Ach so rough @creative_writer but glad to hear you're doing what you need to to look after yourself. I hope things improve soon hun 💜🤞

In response to: Re: Don’t want to accept the pain

creative_writerSenior Contributor25 Mar 2025, 7:52 pm AEDT

Re: Don’t want to accept the pain

@Jynx I sometimes do get flare ups, but I’ve been living with chronic pain for years. You somewhat get used to it, but that’s not to say it’s not hard. I’m chronically fatigued

In response to: Re: Don’t want to accept the pain

JynxModerator25 Mar 2025, 8:32 pm AEDT

Re: Don’t want to accept the pain

Ugh it sucks how you get used to it hey @creative_writer

Like my back/hip pain has been getting worse but I stopped really noticing... until it started actually making it difficult to get up in the morning 😫 Really gotta get myself to a physio!

In response to: Re: Don’t want to accept the pain

creative_writerSenior Contributor25 Mar 2025, 8:46 pm AEDT

Re: Don’t want to accept the pain

@Jynx I literally can’t sleep on my back without experiencing pain. My lower back starts hurting. Maybe I have the wrong pillow or maybe my spine is weirdly curved sideways. Lying on my right side feels different to left. People tell me to lie straight, but I’m like how.

I hope you are able to find a physio 💖

I’ve been stressing a bit over finding work. How do you get into a job with limited experience. Like I don’t have 20 years of experience

In response to: Re: Don’t want to accept the pain

JynxModerator25 Mar 2025, 9:25 pm AEDT

Re: Don’t want to accept the pain

Aye I think also maybe an x-ray to check for stuff like spine curve!! Haha how do our journeys keep lining up like this @creative_writer 😋

Yeah it's so bonkers how much experience some places require!! Like hello, how do you think people GET experience? So frustrating.

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SANE acknowledges the Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

SANE values diversity. We are committed to providing a safe, culturally appropriate, and inclusive service for all people, regardless of their ethnicity, faith, disability, sexuality, or gender identity.