chronicallyillcloud

[chronicallyillcloud]

I’m sick of just trying to get through things.

I want to enjoy things. I want to look forward to things instead of just dreading being tired and in pain.

[chronicallyillcloud]

Hey, if you’re not as mentally quick as you used to be because of your illness- that’s okay. If you’re can’t think as fast or handle as many tasks that’s okay. You aren’t stupid, you aren’t unintelligent, and you aren’t less worthy of love or respect. It’s okay that your brain won’t or can’t go back to how it used to be. It’s different now, but it’s okay.

[chronicallyillcloud]

Being chronically ill is a fulltime job.

Since I can't do a lot while being disabled, I just have to sacrifice the things that costs the most energy. When I get even less energy, I have to try it again and again and again, until there are a very few things I can do.

For the most part I've come to terms with it, even if I need to have a few weeks to adapt, but some days I just want to do more. Even the things that I can do are limited to do 2 things a day if I'm being lucky.

I want to have a passion about something, but I know that I'm unable to keep it up for a long time. The pressure that comes with productivity and 'succeeding' is mentally draining when I get a flareup that lasts for weeks. That feeling of failing something again is demotivating.

So I want to do something that is a passion without any expectation of selling something. I realised that I never did something in my spare time just for the heck of it. I feel guilty for wasting my time. Even the media I consumed had to turn into content by reviewing it in my old blog or using it as material to write stories or references to make an art piece.

This year I started to read. Got myself a new ereader and it's reasonably light on my hands with gloves on and it's been great. I had a period in the past where I wanted to be a writer, but I didn't read much so I jumped in on classics and books I didn't enjoy. It felt like I wanted to impress people by getting into literature. Overall, I didn't have a good time.

But now I'm reading whatever I feel like without getting anything out of it. I guess it does have mental benefits - it's calming my mind. I explore my love for stories, I feel a sense of accomplishment whenever I read, which is a miracle to me.

While I love doing my other activities, they feel like I'm passing time. It's as if I'm distracting myself because my only job is to survive. I do enjoy myself while I'm doing it, but it doesn't feel similar to when I'm reading. My soul feels more and more enriched as I finish more books.

The thoughts that are at the back of my head that makes me feel guilty to enjoy my life is slowly fading.

After reading 100 books this year, my eyes are definitely exhausted, so I need to take a break and listen to audiobooks for a while.

I wish I could implement this feeling into anything I do and I think I can. I think I need to keep seeing this in a hopeful manner. I need to remember this feeling.

[chronicallyillcloud]

[chronicallyillcloud]

There are ways people isolate disabled people and it's by over protection and neglect.

My mom has hidden important events before because she's afraid I'd feel bad, since I already have much going on, but now she 'forgot' to mention that a relative has died. She casually mentions it 2 weeks later, remembers every detail of who has been to the funeral, what everyone wore, etc. We've been video calling 2 weeks before, she saw how fatigued I was and I'm guessing that's why she didn't even say anything.

I feel grief, that he's passed so suddenly

I feel horrible for not being able to pay respects

I feel horrible for not being there for other relatives to give my condolences

I hate that I'm making someone's death about me, because nobody in my family says anything to me anymore. I don't exist.

My mom really cherishes it when I visit her during the holidays, but I think I'll stay at home this year and maybe for a long time. I don't think that giving me stress for the entire year should be rewarded. She feels like she's getting away with it because I let her.

Whether I'm able to go or not, she took the opportunity from me to choose, again. I still have a wheelchair, I'm still able to travel with some support. Ironically, I talked about this very subject a week before to her and she has learned nothing. She knew I wouldn't like this behaviour. At this point I might as well assume that she's ashamed of me.

If she thinks I'm unable to go to a funeral, then I'm unable to have a party with her.

[chronicallyillcloud]

Also, if you only have 30%, and you give 30%, you didn't give 30%. You gave 100%. You did your best. Your best is going to look different each day, and even from moment to moment within that day. And some days really are just about making it to the next one. That counts, too. If all you did today was breathe, you did enough.

[chronicallyillcloud]

Disabled and chronically ill people are allowed to enjoy things and do things they like (if they’re able) while still being sick and disabled. Yes, even if they aren’t employed. Hope this helps.

[chronicallyillcloud]

Being 90% bedridden feels like torture if I love being productive. I'm reading more books lately to stop being online all the time, but I'm barely able to focus and after a few hours I'm unable to focus at all. I'm basically dissociating for a large portion of my day. I could watch TV and such, but I'm just 'consuming' and I feel empty when I do this for a long time.

I need to reframe my thinking on 'productivity', 'usefulness', 'wasting time', but it's really hard. I see people enjoying their life, the world keeps spinning and I'm just alone in the same bedroom. It's lonely, isolating and everything I do feels useless.

I feel like entertainment is never meant to be watched for 24/7, it's meant to be a treat after a day of productivity.

[chronicallyillcloud]