Lived Experience Forum

[PinkFlamingo]

Hello there @creative_writer 🙂🌺

I hope you got some rest last night 🙂

Yes - you’re right; slowly does it, and it’ll happen 🙌🏻☺️

POTS does make it really challenging to exercise…I don’t know if this helps you too, however I do most of my exercise horizontally so if I have a dramatic reduction in blood pressure or heart rate drops to 20 beats (which sometimes results in fainting if I’m upright and have been exercising), there’s less risk of dynamic shifts in blood volume away from my head. 
I also wear compression socks and leggings during the day, to prevent pooling, which does help 🌺🙂

The only thing is I make sure to rest and recover fully before standing up, otherwise my eyes do go dark, but I get up slowly and incrementally so it tends to be much less of an effect 🙂

There’s lots of Pilates-like exercises that can be done while laying or side lying, which is what I tend to do, to work on core strength and joint mobility 🌺

And the loop monitor being implanted on Wednesday should give much more information regarding heart activity over the coming months, which will be helpful in deciding which treatment to do (I feel really lucky to have found an excellent professor cardiophysiologist).

im really glad the foot rollers sound like a good idea - would love to hear how they go if you do give them a try 🌺🤗

I hope your day goes well today sweetness 🥰🌺

[creative_writer]

@PinkFlamingo pilates and gentle walks probably would be the best place to start for me. Don't think it would be a good idea to start vigorous exercise upright to begin with. I wear compression clothing everyday, it helps me get through the day, and electrolytes also help.

I am glad you have found a amazing cardiophysiologist. Having a good doctor really does help. I hope you are able to get some answers soon 💖🫂💖

I just had an appointment with my psych today. She thinks it is worth exploring a potential ADHD diagnosis with my psychiatrist. My attention span is pretty awful, I feel like not being able to concentrate has added to the stress of everything I already deal with for so long. The fact I responded to increased Matcha drinking was telling. I felt so stupid all these years, concentrating was hard, so I ended up ruminating over the past because I could not function. With the increased caffeine, I've been doing better, not perfect, but better

[PizzaMondo]

Hi @creative_writer 🙂
Just wanted to chime in here as I was late diagnosed with ADHD in adulthood not too long ago and was wondering how you felt when your psychiatrist suggested that may be worth exploring? Do you feel like you'd like to see where that may take you?

[creative_writer]

@PizzaMondo It is a bit overwhelming to be honest, if ADHD is the reason why I struggled all those years, it's just a shame it went under the radar, I could've done so much more with my life by now. I think it would be a good idea to explore it to see if there is anything I can do to manage it if I do have it

[PizzaMondo]

I can imagine it is overwhelming @creative_writer - I had these same thoughts and went through a process of grieving all my years not knowing and wondering how different life would have been if this was known to me as a kid, or even 10 years ago!

BUT, once we have gone through that process, I promise you it's not all over, we have our lives ahead of us and with the new info about us we can make our worlds more comfortable and direct it as we want. I've been able to identify 'what does PizzaMondo need?' in work settings, at home, with friends, and even with my family, that has aided overall with my mental health (something I never asked myself or .. felt I was allowed to). I guess I'm being kinder to myself and the more I learn about myself, the more I can use my ADHD brain in a way that feels good and serves me rather than work against me 😛

I am excited for you to go on this journey, I feel like you will definitely learn more about yourself and find many new strategies and skills in how to manage things that are difficult to currently!

P.S. You got me here if ya wanna chat more about it or have any questions.

[Shaz51]

Hugs @creative_writer ❤️

Diagnosed with Adhd now @PizzaMondo , how do you feel about that 

My husband has had lots of diagnosis and now they think he has ASD 

[PizzaMondo]

@Shaz51 I had been researching and learning about ADHD since covid when the world stopped for a bit for all of us.. so I was 100% sure I was living with ADHD coming up to the assessment.. and when the diagnosis happened I felt affirmed and validated, at the same time felt a little shocked.. However, now, I am very accepting and like I mentioned earlier to @creative_writer - trying to find the best ways to function that feels authentic to me. A big part of the journey has been 'unmasking' and it continues to be a focus in order to live authentically.

I recall you mentioning Mr Shaz and ASD - has there been any progress for him to seek a diagnosis/psychiatrist?

[creative_writer]

@PizzaMondo it took years for me to figure out I had ASD. I was 18 and my psych at the time told me I had ASD, I don't think I really made sense of it until years after the diagnosis. I mask a lot, it's automatic, so I think many people don't realise until they get to know me. I do often feel like I am not really authentic around people, it does get lonely.

I feel like ASD and ADHD is often under-diagnosed in girls and women, especially if they mask. I was just the shy kid who struggled to pay attention. I acted differently at home, I was the bouncy child, couldn't exactly bounce around when at school. I do stim at uni during class, and at times to my own detriment, though I'm trying to replace the unhealthy stim to a more healthy one. I now wear a soft bamboo scarf.

@Shaz51 a lot of diagnosis can be tough. Sending you and Mr. Shaz lots of love ❤️ 🫂

[PizzaMondo]

I know exactly how you feel, even with the unmasking, it still feels and does get lonely.. but one thing I have learned is that if I am able to surround myself with people who are either likeminded, share a common interest or are supportive in the sense they can listen to me without judgement, I am more likely to feel comfortable without a mask on..

I agree with you though @creative_writer - both ASD/ADHD is often overlooked! And females find ways to stim in public that is more subtle, example twirling hair with our finger, chewing gum, playing with rings (I still do this, my fave!) I feel like for some of us, when we are at home it was more of a 'safe place' to be the unmasked version of us, compared to in school where being the bouncy kid was seen as disruptive or something.

Have you seen the neurodivergent booklist I had created?!

I am glad to hear that you are finding healthy ways to stim, I know I used to chew my lips and bite my nails a lot, so short they would hurt, and now when I use nailpolish, I avoid the biting because I hate the taste and the nailpolish chips in my mouth.. lol... so I am glad you have this soft bamboo scarf now! What colour is it?!

I am heading off now, so goodnight to you both @creative_writer and @Shaz51 - hope you have a chill evening 🙂

[Shaz51]

OK good night @PizzaMondo 😊☕️

@creative_writer 

Mr shaz does not know if he wants to get a proper diagnosis,   takes time and is expensive