Lived Experience Forum

[PinkFlamingo]

Hey there @creative_writer 🤗🌺

Yes, that does sound like a really good idea, with gentle pilates and walking, instead of anything too taxing 🙂 

Compression clothing really does make a difference I think, too 🙂 Electrolytes is a really great idea, also xx

Thank you kindly re the cardiophysiologist, the loop recorder should give us some really good data over the coming months, and Im really interested to see what kind of heart rhythm issue is present, and how they are going to approach it 🙂 

Ok that sounds like things are heading in the right direction regarding the appointment today? Hopefully they can explore more into what is happening for you, and then look at exploring what might be helpful.... how do you feel about it, if you dont mind me asking? 💜🌺

[creative_writer]

@PizzaMondo it certainly is easier to take off the mask with those you can relate to. It is so true females find more subtle ways of stimming, I have done a lot of hand rubbing at uni, but trying to cut down on that, it's not good for my already sensitive skin, and hypermobile joints. I have the bamboo scarves in different colours like black, navy and grey-green. I have got some viscose ones that are soft as well but not as soft as bamboo. It's a better option to play with scarf as opposed to rubbing hands. The soft touch can feel soothing.

I absolutely hate nailpolish going in my mouth, I don't wear it often, but the idea it's going to go into my mouth puts me off, I eat with my hands a lot.

I hope you have a relaxing night and get lots of rest 🫂💖

@Shaz51 totally get what you mean about the proper diagnosis. It does take time and is expensive which is why I haven't gotten one for ASD. There is pros and cons for getting a full assessment. I think for assessing supports from NDIS a full diagnosis is needed.

@PinkFlamingo I start my day with coconut water, seems to help me with fatigue in the morning.

It does sound like your cardiophysiologist is very thorough in their work. I think you are in good hands, and I wish you the best 🫂💖

I think things are headed in the right direction, it would be helpful to know if I do actually have ADHD, i've known for a while that I have many of the symptoms. I am still sort of wary about taking meds for it in case it triggers manic episodes, and I'm already on so much meds I don't want more. i know it's just the early stages of figuring things out, I guess I'll cross the bridge later

[Jynx]

@creative_writer just chiming in briefly to say that most ADHD medications might cause agitation/heightened energy in neurotypical folks, but is cited to have a calming effect for those with ADHD. Well... not so much calming in the way a sedative is calming but like... slows down thoughts, facilitates clarity and focus, stuff like that. Having said that, it is definitely something to discuss further with a pdoc (hopefully one at least familiar with, if not trained in, treating ADHD). I believe that there are also some non-stimulant medication options you could also explore. 

Also hello! Lovely to see you round tonight darlin 😊💜

[PinkFlamingo]

coconut water sounds a very nice way to start the day @creative_writer  🙂💜

Thank you kindly regarding the cardiophysiologist, I really appreciate that xx

Yes it would be really helpful to know about diagnoses, for the reasons of NDIS, and also to see if medication adjustments might be helpful when taking into consideration which symptoms relate to which health concern 🙂 xx Thats totally understandable and very wise regarding taking additional medications without doing a comprehensive review first, however I think that might come up naturally later on, after the time is taken to have a look into what's happening for you, and seeing if there is a diagnosis that is reached using quality methods and tests  🙂 

The only thing is that it can take some time, however hopefully your psychologist has a few connections to get you to where you need to go xx

I hope things are going ok this evening for you, and you get some good rest tonight 🌺🙂

[creative_writer]

@Jynx I know with caffeine, I can have it in moderation and it calms me, but once I consume too much (what's too much for me is not too much for many) I am agitated. My brain's delicate balance can be thrown up very easily. Same thing happens with antidepressants, I cannot tolerate normal doses of most of them. Maybe that's just the nervous system of my HSP brain. My brain is so weird. That's why I fear a lot of ADHD meds will make me jittery in normal doses. I think the pdoc is the best person to talk about this with.

It's lovely to see you too. How have you been? 💖

[creative_writer]

@PinkFlamingo I know a lot of people find NDIS helpful, I'm not looking into applying for it right now but I do know the option is always there if needed. I guess it's still early days, I have my pdoc appointment next month so will wait and see what he says. I'm going okay this evening, a bit stiff though, but my congestion is clearing up, so hopefully I will feel more like myself again soon. Are you up to much this evening 💖

[Jynx]

Aye totally feel you on the caffeine @creative_writer I often feel more tired after a coffee hahaha. Yeah hope that you can figure out a good balance with support of your pdoc, and idk maybe there'd even be like a plan to scale back on dosage during times of heightened risk of mania or something. Also, something to be mindful of (pdoc never told me this, I had to learn from a friend studying nursing) is that the meds can be effected by mensturation cycles cos of hormonal fluctuations, so if you've got anything impacting your hormones (like endo or PCOS for instance) that might be worth discussing too. But I'm getting ahead of myself! Wouldn't you know it, neurodiversity is one of my special interests 😂

I've been ok, dealing with some tension in one of my close friendships but I'm hopeful it will lead to us working through it and thereby strengthening our relationship. Just a bit stressful in the meantime. So I've been playing LOTS of video games lately to distract my brain haha. 

How's everything with you? What's next in your uni journey, just gearing up for placement? 

[PinkFlamingo]

Yes indeed NDIS can be very helpful @creative_writer 😊, and I think when the time is right, having a look into it when you feel like it will be worth it xx

I hope the pdoc is open to further investigation, that would be really great 🙂

Thats great to hear youre doing better this evening, and the congestion is clearing, and I hope the stiffness goes away and youre feeling much better tomorrow xx

I was going to check on the resilience of my window of tolerance by watching the Real Housewives of Beverly Hills 😁🙌 .. its my informal window of tolerance thermometer haha 😉👏

Then I think an early-ish night, as I have some more research reading to do tomorrow 🙂 

How about you? 🌺

[creative_writer]

@Jynx it just shows how everyone’s body is so different. I actually can’t handle much coffee with a sensitive gut, I end up getting most of my caffeine with matcha which I prefer since I don’t get the crash. Caffeine doesn’t really make me sleepy, just relaxed. I do have a lot of brain fog, that makes me feel sleepy. I’m not sure what happened to my brain cells, I feel the chronic stress has affected my body. Or maybe it’s my meds?

I hope you are able to work things out with your friend, things happen sometimes. I do hope it makes you closer 💖

Im finishing up with my last assignments for the semester before I head for placement, it’s a busy time.

@PinkFlamingo sometimes an early night is what you need. I do find TV can be a good distraction. I wish you the best with your research reading 🙂

[PinkFlamingo]

thanks @creative_writer  🙂 xx

Good luck with finishing up assignments before placement, and I hope placement goes well too 🙂

Night night, looking forward to catching you next time sweetness. Till then, take good care 🌺💜