Lived Experience Forum

[creative_writer]

@PinkFlamingo invisible illnesses are hard but can have a profound effect on the body and mind. It is true so many meds are experimental and doctors don’t understand how they fully work. I would say being on meds is probably better than burning brain cells due to high levels of stress. I know untreated MI can create havoc, so can many physical illness. I’m better than I was earlier, it’s been a crazy day with emotions. Sometimes you need to let them ride out. I try so hard to not feel or think about things, it sort of builds up and becomes harder to avoid.

I hope today has been kind to you 💖🫂

[creative_writer]

Feeling restless but not sure why. I can’t concentrate, I can’t sit still and I’m barely progressing on my uni assignments and wasting time jumping from one thing to another. Too much is going on my mind

[tyme]

Hey @creative_writer ,

What has helped in the past when you've felt restless? I know this is an annoying 'go-to' question, but I'm genuinely interested.

I wonder if a clean break from studying can help you re-focus? Sometimes, trying for too long can just make things worse.

Have you ever read something again and again and again, and you still have no idea what you have read? When this happens to me, I end up taking a break and coming back to it instead of wasting time.

I wonder if this is helpful?

[creative_writer]

@tyme relaxation exercises can help. I feel like I also do better on structure and getting out of bed sooner rather than later is a better start. I wake up early, but waste so much time in bed, I sort of wake up feeling emotionally paralysed and then don't feel like getting up because bed feels safer. I know I will get more studying done if i get up sooner, but it's hard to motivate myself at times. I work better in the morning than later in the day

[PinkFlamingo]

Hey there @creative_writer 💜🌺

im so sorry I hadn’t posted my reply - I’ve just returned to the page and it was still sitting.. so sorry sweetheart 🫂🌺💜

I’m really sorry thing have been so fluctuating in terms of how you’re feeling - have things settled down at all for you? 

I can relate very much to trying to set aside how things feel and then not being able to avoid it when it won’t go away.. I used to draw and write when I felt this way which was a kind of externalising of it.. is there stuff you do to help get those feelings out or to make sense of them? 🙂🌺

here with you, and again I’m so sorry I didn’t click post to reply to you earlier.. I didn’t mean anything by it - it’s just my lack of checking to see if it had posted afterwards 💜🌺🫂

[creative_writer]

@PinkFlamingo i'm doing better, a bit achy. I'm a bit congested today. I've been trying to figure out what works for me in terms of externalising. I know poetry help. I have tried scribbling too which probably doesn't look all that great but gets the frustration out. No need to apologise, it happens, I hope today has been kind to you 💖 🫂

[PinkFlamingo]

Glad to hear you’re doing a bit better there @creative_writer 🌺🙂

I hope the congestion clears for you before bed so you can get some good rest tonight 🙂

Yes it’s not always easy to find a way to express what’s going on to externalise, is it sweetheart 💜

Personally, I don’t think it matters as to whether it’s messy or not - as long as it helps ..what it’s designed to do, instead of being designed to look nice or acceptable. Some of the stuff I would scribble looked really stark, very strong to the eyes, but it got things out within the action of making those lines and shapes 🌺💜

thanks heaps for understanding - I have some visual changes so sometimes I don’t quite catch what’s happening with functionality on screens (they’re a bit hard to see at times 🙂).

Today has been a gentle day, taking things easy as I adjust to health changes 🙂 

I did 10 mins of exercise today which was so much more than I’ve done in such a long time - extra oxygen is really helping 🌺.. however I’m laying down now for a little bit! 😉🙌🏻

take good care sweetness, and know that you have peeps here with you while you walk this rocky road 💜🌺🙂

[creative_writer]

@PinkFlamingo I’ve been drinking lots of liquids, I’m hoping it settles down soon, it’s been lingering for a while, I’m guessing it’s a virus since the hayfever meds didn’t do anything.

Sometimes I write poems, other times I feel like there is too much chaos to think of anything to write. It guess it all depends. Scribbling comes into action when I have nothing to say.

10 mins of exercise is decent, I would be proud of myself if I was in your situation. I hope things are getting easier for you health wise 💖🫂

I didn’t leave the house all day, I did lots of pacing. I stim a lot, sometimes when studying which isn’t always helpful. I’m teaching myself to remain seated lol, but I feel like a kid 😂

[PinkFlamingo]

I hope it does settle down very soon for you @creative_writer 🙂🌺

Yes, that does make sense regarding times when it’s just a bit too difficult to get things down in words to scribble 🫂

thank you so much - I felt really proud to make it to 10mins 🙌🏻☺️ things will get better, I’m sure 💜🙂

Aw, hehe..I do understand re stimming 💜🙂 Hey I was wondering ..you know those foot rollers, they look like little abacuses 🧮 or are a single roller that is a curved cylinder, and you can put it under your desk (or where your feet are while studying) and with socks on, can place feet on, or roll feet over them, which helps sometimes to do tasks? 
I used to use them to help me concentrate some years ago.. I thought I’d kindly mention it in case it’s helpful in some way 🌺🙂💜

[creative_writer]

@PinkFlamingo I think the congestion is settling, I think the tea helped 🙂.

You can slowly, slowly do things, I’m sure you’ll get there slowly 💖🫂💖. I want to start slowly exercises, just have to be careful with POTS. I have compression leggings and socks which help with circulation, so hopefully that will help prevent the blood pooling. It’s not exactly safe to exercise if eyesight goes dark, I’m lucky that I’ve never fainted at least.

Foot rollers sounds like a brilliant idea. Even in my sleep I move a lot, I think I just move around a lot naturally 🤭