Lived Experience Forum

[creative_writer]

@Radarears I know a lot of people find expression through tattoos, but they’ve never been my thing. I do like ear piercing though, and have considered getting more. You can express yourself through jewellery. It’s sort of like tattoos in a way. I already have like 7, four on one ear and 3 on the other. My parents don’t like the multiple earring trend but my granny does, my maternal granny is one fashionable lady 🙂.

It’s hard when you don’t know where to put the pain. Sometimes the pain we experience is too deep for words. It sort of feels like I’m holding onto the pain but don’t know how to let go. Maybe I’m so used to keeping it in, I have forgotten how

[Jynx]

Hey @Radarears just letting you know I edited your post to remove the description of a self-harm method, and to add a TW/Spoiler tag. Let us know if you have any questions or concerns! 

I also love tattoos - I have quite a few now, and want heaps more. I sometimes think the sitting still is worse than the actual pain 😅

@creative_writer haha yeah I wear through my socks so quickly! I do also like dancing in my kitchen in socks - since it's a lino floor, it's suuuuper slippery, so I can do cool slide moves 😋 Maybe that's why they end up with so many holes!

Yeah I'm still figuring out all my trigger foods hey, and sometimes it's hard cos portion size also factors in and my ADHD makes self-control with food a lot harder. Always dopamine-seeking! And food certainly scratches that itch. 

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@creative_writer wrote:

It’s hard when you don’t know where to put the pain. Sometimes the pain we experience is too deep for words. It sort of feels like I’m holding onto the pain but don’t know how to let go. Maybe I’m so used to keeping it in, I have forgotten how

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Reminds me of this: 

[creative_writer]

@Jynx I find it incredibly difficult to sit still. Always feel the need to move.

Dancing is good exercise 🙂. I’m sure you are able to make some cool moves.

It’s true that pain is not meant to be buried in the body, just trying to work out what to do with it

[Jynx]

@creative_writer aye it's the neurodiverse way, innit? Wriggly lil things we are hahaha. Dance definitely helps with that! 

Hmm well, there's artsy stuff, singing, even dancing helps me move through pain - it's why it's one of my go-to coping tools. Screaming is also always allowed, and can definitely move a lotta energy through/out of the body!

[creative_writer]

@Jynx while I don’t think I have ADHD, I certainly have some traits of it. I think many ASD individuals do.

I think I’m just trying to figure things out right now. Might have to look at other ways to express if I can’t always find the right words. I have suppressed my tears for a very long time too, I think I’ve forgotten how to cry properly, I know that releases the tension in our bodies too. I would only scream, away from my home

[Jynx]

@creative_writer yeah there's so much crossover hey - I got juuuust enough ASD traits to feel like it's part of my neurotype, but not enough to pursue a formal diagnosis. The ADHD is much more prevalent for me. 

I think there's ways to release it all - I'm sure you'll figure it out. Even if you just take yourself out into nature every few weeks to have a big scream in the bush. 

I'm off for the night, take care of your wonderful self and I'll catch you next time hun 💜

[PinkFlamingo]

Hey there @creative_writer 🌺

I hope you got some sleep, and today is better for you 💜

[PinkFlamingo]

I do get vertical nystagmus (eyes bouncing up/down) when I’m tired and trying to read @creative_writer because i have permanent brain inflammation as a result of an immune/bone marrow issue I have (and an old brain injury which also reduces workload tolerance - what I refer to as bandwidth). It’s very annoying when I want to get study done! 👀 😣

I have also had it happen when recovering from the many drugs used during surgery (of which I’ve had over 30 major operations, I don’t count the ones where it’s only day surgery where anaesthetic isn’t as heavy and I bounce up and drive home like nothing happened) 🌺🙂

I have been reading through some posts (sorry I didn’t reply last night - I felt a bit unwell which kept me busy), and saw you were chatting with our ever-wonderful @Jynx about SH, and I gently wanted to say to you that my heart felt crushed that you feel so much pain 🥺💔 and I just want to hold your hand and give you the space you need to cry, and let this pain out ❤️‍🩹

Like Jynx mentioned, movement, lots of it, and floor sliding, dancing, yelling, singing, and a good ol’ scream session all help to let off the steam that builds with carrying so much pain - I do these myself (well, the ones that are possible to do on crutches ☺️) to let that boiling point simmer down a bit to manageable levels. 
I have gotten a tattoo before to see if it would do anything to distract from my deep pain I feel - talking about emotional pain here - where I told the artist don’t use any numbing medication so I could see what it feels like, and it was nothing at all; I actually fell asleep while he was tattooing me, for the entire time (even over the bony areas). For me, it was less pain than I manage to go to sleep with each evening without pain meds (I’ve experienced some pretty sore injuries over the years), so a tattoo - even a relatively large one on an apparently painful area didn’t come close to distraction/equivalent to my internal pain experience both physically and emotionally, at all for me… and I was left with a tattoo that everybody who has seen it has made a wide variety of judgements from (I got this tattoo some 26 years ago) which did contribute at times to me feeling lower self worth because they stigmatised tattoos and by extension, the people who have them. It’s a beautiful big flower, anyway. Something that shouldn’t draw judgement ☺️

I guess the point is to gently let you know there are different views, and while some things work, that same thing may not work for someone else, and the more important thing is to find ways of releasing pain (including long term frustration/anger/suppression) in ways that are the least harmful for you 💜💜🌺🌺

I had fast cars and motorbikes, and I used to do racetrack weekends at around 260km/h to get out all my pain, because it was beautiful feeling the wind as thick as water against my body, while I pushed my way through it on a thundering machine held to the earth by two small patches of rubber, which was fully under my persuasion, control, and the risk was all mine - I was my own master, and the master of a beautiful piece of machinery which worked with me like we were one entity. I would reach a complete state of flow in this environment, for which I had a very high threshold to overcome, because of the types of emotional and physical pain I feel.  
Flow is the only way I can effectively and significantly ‘vent the steam’. Since I can’t ride anymore (I have neuropathy in my arms and legs), I drive fast (I have advanced driver training) on deserted remote locations or on private roadways..forwards, backwards, and sidewards😉, but always within the legality of the public roadways (private roads I let loose with permission of the owner). 
I know if I couldn’t do this I would have lots of steam, and I wouldn’t be able to function as well as I do with a suitable outlet for what I feel. 
Please know you’re not alone, and there are ways to let out the pressure of the emotions, you just need to find it…and please gently know, with all care for you, SH isnt on that list of constructive methods of self care 💜💜💜💜 

Please do find a way to release tension that gets it out and away from you, instead of just moving it from your inside to your skin sweetness 🫂💜🌺

[creative_writer]

@Jynx I definitely think there is an overlap. I personally score higher on ADHD screening tools, so does my sister. My attention span is pretty bad rn. My sister has wondered whether she is ASD herself. I think my ASDness is more prominent than ADHD traits. I hope you slept well last night 💖

@PinkFlamingo I hope you are feeling better today 💖. I only noticed the eye bouncing recently, I didn’t know it happened. It’s more obvious when I’m reading Arabic since I’m less fluent in it than English, so I may have adapted to compensate. I’ve still had times when I skipped words even in English. When I’m reading Arabic, I mistake letters, sometimes skip lines even.

I get the stigma around tattoos, they are more stigmatised in some communities than others. It is a form of self-expression too. It’s kind of how I see piercings, getting cartilage pierced can be a bit painful but they look so nice. But I won’t say it’s the worst pain I’ve experienced, migraines can be more intense. One of my piercing did close after I left it out for a while, and I was unable to open it back. I still do have 7 piercings, kind of feel tempted to get another.

I’m feeling a bit better today, my mind is still scattered. Concentration is running low and time is ticking for assignments. I struggled to get out of bed but got out eventually. I remember trauma when I wake up in the morning, and I then distract myself on my phone to deal with the pain. My go to is distraction, which you can’t always do because you have to sometimes sit with feelings. Maybe it’ll get easier with time

[PinkFlamingo]

Thank you kindly @creative_writer 💜🤗🌺 I’m trialling a new medication for immune probs and it’s got bumps in it’s road 😉

The nystagmus may indeed have been initially noticed due to using unfamiliar eye movement (like when reading in a different direction with different characters/letters like when reading Arabic) however it is always worth catching up with your GP and seeing if it is related to life factors (diet/deficiencies in nutrition, medications, stress/anxiety, etc) or if it is an ocular issue (eye structure and function, with brain coordination) with a referral to an ophthalmologist. Sometimes people are born with this kind of eye movement, and it presents under certain conditions, but it’s best to see about it and find out if you need to do anything about it, with your GP as a good starting point 🙂
Best to always check anything neurological/visual with the docs sweetness 🙂🌺 

Yes, tattoos can be a form of self expression - I grew up around people who were tattooed and pierced in locations ranging from head to toe, as a form of describing their allegiance. I saw the responses from people and authorities, and witnessed the varieties of reactions 🙂

Personally, I prefer not to be inked, however I have no prejudice either way and I don’t mind having the tattoo I do which was my curiosity into how people had mentioned they can give an outlet or a focus of pain (which clearly didn’t work in my case, since I fell asleep ☺️). I also tried multiple piercings at a friends suggestion, and they also didn’t have much of that distraction/possibility to express emotional distress through physical pain - I just didn’t feel it that much. I have no preference for piercings besides my earlobes, which I have done myself several times at home when they heal up completely after a longer stay in hospital. I have had surgery without anaesthesia, and so I am guessing that I have different thresholds that lay outside the ‘norm’, and don’t see body modification as a personal interest or goal. 
I do have a body covered in large scars, though, from multiple surgeries to keep me going, which are I guess a form of non-selective body modification, and very noticeable by others if I was in public. Interestingly it took me some years to adjust to having these large alterations to the surface of my body, as well as the metal that is inside me in varying locations… it’s a strange feeling having to get used to things about yourself you didn’t necessarily want to happen, but are there anyway 🙂

If you feel like expressing yourself with piercings I think go for it! Do what makes you happier within yourself 💜🌺🙂

I hope today is improving for you, and the brain bandwidth is opening up a bit more so you can get some assessment task work done 🌺🙂

Those mornings waking up with trauma memories is something I can relate to, and I also use distraction, but some days I just have a good cry, and let it out, then move on to my day after letting it be ok to have sh*t starts to the day 🤗🌺

it does get easier, and after a half century of trauma (it’s only very recently I’ve been able to step away from trauma in my life), I am finding the memories are there, but the emotional fallout is becoming easier to deal with as time passes. Notwithstanding the odd bad days, of course - I think many people still have those even when living in a comfortable space of recovery - but I still do push through to make something positive if I can, each day 💜🙂

it’s not easy, but it’s worth it to keep trying for recovery 🫂🌺💜🙂