u/peaisquick

I want to create some accessible art tutorials for people with chronic illneses and it would help me a lot to understand what are the most common challenges for making art in the community,

Multiple choice option for people with low spoons today;

1. Low physical energy
2. Low Mental energy
   3.Hand coordination
3. Lack of skill or training
   4.Lack of tools
4. Financial reasons
5. Lack of experience
6. Hand strength
7. Difficult instructions

Additionally, it would help me to hear what kind of creative things you guys are already doing or wish to do, so that I know what interest and skills already exist, thank you!

Hello, keeping the post short for accessibility.

What are somethings you wish knew when your symptoms started?

I am new to CFS and everything i've read says i need to start "managing" my symptoms as early as possible to protect my baseline.

It's hard to get doctors to help me beyond prescribing fist fulls of Tylenol. I don't know if I actually have ME-CFS or if this is something else, but I share your symptoms and i would appreciate everyone's advice on pacing and pain management.

Thank you.

This is a follow up post, i wrote a few days ago about what remission has been like for me and i got comments to post about my recovery steps.

1. Therapy; I know a lot of us here are already in therapy. A few things about mine, Something that really helped me in particular was having specific goals for what I wanted to do. You will be tempted to believe that your life and mental health will improve once you start going outisde, so your every effort should be to getting you across the door, but i think focusing on improving my general over all mental health and well being while inside is what gave me the strength to be outside. Personally, i experienced a lot of anxiety and panic just being on my own in my room. I couldn't ignore that to just focus on going outside.

2. Exposure;
   2a. Stage one: --was about reducing intensity. I would get up, get dressed, walk to my door, open it, take one step outside, then come back in. The goal was to help my brain not panic every time i dressed up.
   I progressed to then stepping out of the building, then to a nearby store. Sometimes i had to go far for therapy or because my family dragged me. Those times became less intense the more i practiced.
   2b. Stage two: -- was about finding things that forced me to keep going outside, or in other words, giving my self commitments. For me it was volunteering, to be honest this was very hard to keep up with, and it would hurt my self esteem every time i didn't show up and people were expecting me to, but if going outside was easy i wouldn't need to practice it. Sometimes id' make it half way there and turn around. 😭😭

3. Medication; i've tried many, the one that worked best for me is Lexapro. Everyone's experience will be different. Many pharmacies have an option to get your medication delivered, depending where you are in your journey this might be a good option for you. I also have a panic attack medication that i take as needed, thankfully my panic attacks went from being almost daily back then to now, I haven't had one in months.

4. Keep track of triggers; is it easier for you to go outside alone or with people? Do you prefer to blend in or does wearing flashy makeup/clothes help you feel "protected" ? I noticed a ton of tiny things; like that I felt better if i had something in my hands while outside, an umbrella, a cup of coffee, a box, a bag, anything. I also have an easier time outside if i'm alone, and it's easier when i'm going to places i've been to before. Some people like blending into crowds but crowds are suffocating for me so i prefer to commute out of rush hour.

5.Escapism; headphones and podcast / music while outside.

6. Recovery; You will be drained when you come back inside, rest, decompress. There is no such thing as a 'failed attempt', every attempt is a win. To be a hones it took a LOONG time before i was even ready to start trying. To try at all is a huge step.

7. Improve your time indoors. If punishing and hating your self healed humans then therapist would be out of a job. It doesn't work. Making your self a cup of tea, watching videos about interesting things, making your curtains a color you don't hate is the kind of thing that helps a lot more.

I spent a few years unable to leave my home because of the intensity of my agoraphobia, with only sometimes making it out for therapy or being forced outside by my parents. I won't talk about recovery, i think there are a lot of post here like that already, but I want to share what remission is like;

I don't have to hype my self up for days before being able to leave the house, but there are still days were I have to take a 5-10 minute pause before i exit the building. I'll be on my way out and then suddenly the door seems intimidating, I'll give my self a few minutes on my phone and/or do some breathing exercises before I step out. This is happening less and less now that I'm on medication, how often it happens seems to be related to stress.

The outside world is still deeply overstimulating and exhausting. I still have to spend time recovering once I'm back inside. I don't relate to people's ability to be outside 24/7 only coming back in for food and sleep, however, this level feels like it can pass for a quirky personality trait, 'oh she is a homebody' and "oh she is an introvert" as opposed to what it once was.

My mindset is still to maintain 'exposure'; for example, getting my medication delivered would be more convenient for me, but picking it up forces me to get exposure, so i pick it up. I try not to go too long without socializing / going outside, although it would be my preference, because I know the longer i go without it the harder it is to do it the next time. That being said, I don't push my self to the braking point either, and will opt for virtual therapy for example when if i'm going through something else and don't want to add stress!

Going to places (Stores/restaurants/etc) during the times of the day were they're mostly empty is still ideal. It makes a huge difference, takes me from tolerating being outside to actually enjoying it and having a good time.

--If you're also in remission, what has your experience been like??

--If you're currently in the thick of it, I'm so sorry, and i hope my experience can paint an image for you of some better days to come.

Edit: If anyone DOES want to hear about some of my recovery steps lmk and I'll make a follow up post,

Hi, I've been reading through this subreddit as a way to work on the cognitive dissonance i experience in relation to my intelligence.

As a child, my neuro-divergence made it difficult for me to understand i couldn't/shouldn't correct people, that i was answering questions too often, that i was asking questions too often, and so young me was often bullied, harassed and physically attacked by students. I also had some teachers target me, which at least twice led to my parents and the school administration having to get involved.

I developed a lot of complicated feelings around the idea of intelligence. Performing well felt really really bad (read above) and performing badly felt really really bad (Affected my self steam).
I spent many years teaching my self not to think of my self as smart, which was VERY easy to do, but came with a lot of cognitive dissonance. Specifically because despite my efforts, people often assume i am smart ( which by the way is super embarrassing when it then turns out I'm an idiot in whatever topic they are asking about). In my defense, i truly do try to project as much stupidity as I can, but i don't understand how neurotypical brains work, so my attempts to control how they perceive me often fail.

So yes, i came to this reddit as a way to work through some of these issues, but i'm concerned..

I see little strands of eugenicist thinking, and the clear signs from some of you in thinking in isolation, which is to be expected, but nevertheless results in the type of faulty reasoning someone else could have corrected if you were thinking out loud. I worry this subreddit might have the opposite effect of what I want, and increase my negative feelings around intelligence, have you guys found it helpful? if yes, in what ways?

Also, for anyone who has worked through similar issues, do you have any advice?

in my personal experience somethings that has helped is surrounding my self with people who are smarter than me, (usually older people) because then i don't have to worry about intimidating them. Additionally, I get the satisfaction and enjoyment of becoming smarter through them.
Also, switching topics of interest means that I can make my self a novice over and over again, and therefore avoid the discomfort i feel whenever i'm becoming too good at something. That being said, these are all ways of avoiding my feelings around intelligence and excellence, instead of working through them.