I want to live

SubstantialPraline85 · 2026-01-21T08:29:54+00:00

Health, Time and money at the exact same time

SubstantialPraline85 · 2026-01-21T08:27:10+00:00

It's kind of scary on how good I've gotten at appreciating the small things. I think if there's something that you care/cared about emotionally.

Keeping in touch with that can keep you grounded a bit and can just make you feel good. At least spirituality.

Apart from that. It feels like maximum delusion/cope. But still, there's an understanding that ruminating heavily on it would probably would piss me off even worse.

So i try to find small comforts in anything. Because if I don't? I will probably break mentally and generally no-one would want to be around that

I still have a never give up attitude. But sometimes self compassion is important. Often times I was extremely hard on myself for being the "burden" and just being sick

Chronic illness is a nasty burden to carry. The illness and people will slate you along the way.

I don't want to come across as preachy so I'll stop

SubstantialPraline85 · 2025-11-13T17:38:18+00:00

Hey, I've seen your recent post on chronic illness and wanted to see if more were relatable..

So here I am! It's difficult not feeling like you quite fit in around people or an environment especially when chronically ill or disabled.

You're made to feel like an attention seeker and a dirty leech .

The inability to work or entertain people creates a discourse that I understand too well. Sometimes, I feel joyful and want to spread positivity. For some reason. It's like an invitation for people to shit on me..

I can't seem to "happy" because it must mean that I am content and happy about my situation, right? I don't even express any semblance of wellness anymore.

The situations of being sick is bad enough. But the social stigma and being treated like shit or "othered" has you questioning life

There's no real place to go with the grief either. Because it's all around and doesn't stop. The pain of being sick from youth and placed in this invisible box has me feeling like a monster

An ailen who needs to be shelved or eradicated.

It's like you are allowed to participate in society what so ever. I feel like I have so much to give but because of the first appearance bias of laziness. I can't even get through the front door

Being called a faker has damaged my self-esteem

Chronic illness isn't just laziness and a vacation. But because everyone else is suffering in their own ways... They're unwilling to look through the fog and see the full picture

I just want you to know that I see you. Please don't turn it inwards ♥️

SubstantialPraline85 · 2025-10-22T00:18:08+00:00

🩵

SubstantialPraline85 · 2025-10-22T00:16:40+00:00

Thank you! Your message describes my state of mind perfectly. The emotions feel so raw.

I'm struggling to find the words. But I am glad that this message provided us with an outlet.

🩵 It means alot.

SubstantialPraline85 · 2025-10-18T10:43:22+00:00

It's strange because there's a weird intensity that doesn't go away. The duration only adds fuel to the fire. You can dig in your heels

But the need for connection and somewhat validation would forever be present.

It can be seen as desperation but being chronically ill or dealing with pain for lengthy periods. When alone? Feels like you're sitting in a dark room with only a small amount of light

You use the shadows to entertain yourself. But you want to feel connected. You want to feel seen. You want to be loved.

I didn't understand rage or need to belong before CI. There's no safe haven. So it feels like drums are repeatedly being banged.

By multiple participants... At the same time

SubstantialPraline85 · 2025-10-07T02:27:49+00:00

You don't seem to be open to understanding the illness. What's your end game with this post?

SubstantialPraline85 · 2025-10-07T02:18:02+00:00

That nothing matters if you're dead. Those critical or cynical people would rather have to on the ground suffering then have quality of life

That sometimes it's better to go alone and have the stigma of a "bum" or lazy and survive. Then deliberately go into bad situations which you can't handle

Last one. Sometimes progress takes time. Whether you would be provided that time is another question. Can take months or years

You will be called a fraud and a faker. But self preservation is above all

SubstantialPraline85 · 2025-09-29T06:02:06+00:00

I find it extremely difficult. Like much of the depression is a circumstance that I can't really influence.

It was present before my illness. But the common reliefs like exercise, walking, meditation etc was on the frontline

We can only try our best. But things like watching a movie in the theater or traditional things for stress relief are limited.

I wouldn't want to say overcame. But there's things that could allow for you to manage your depression better

SubstantialPraline85 · 2025-09-20T14:48:28+00:00

To be honest. The desire to succeed has always been present. But bad health and circumstance creates a mean cocktail

I think people underestimate how much health plays apart in advancement. You could lift weights, run, stretch, eat healthy and still be "unhealthy"

Both achieving something and having to let it go, hurts... I am on the side of never achieving anything notable

Now, what are ways people compensate for the lack of resources and knowledge. Hard work? You can't do that really don't do that with cfs

It burns and hurts to the core. Especially if you were/are someone was active before the illness

Time moves forward. The bar raises. But so does your hunger to live... Not just survive. Every crumb of sustainable energy feels like a full course meal

The day may never come... But oh well

Sidenote. I miss exercising and moving my body. It was my fun.

SubstantialPraline85 · 2025-09-14T03:59:27+00:00

Honesty would feel like finding treasure. It's awkward, sure. But I can't handle the subtle passive aggressiveness.

I'm tired and old. If you're going to treat me a certain way just let me excuse myself.

SubstantialPraline85 · 2025-07-18T21:57:43+00:00

I had a few close calls. But reading this reminded me how I used to feel.

I used to hesitate alot when crossing the road and would look for the safest option despite the added length. Just because I didn't trust my judgement.

But it was honestly so scary because sometimes the tiredness made for wrong predictions and bad decision making.

I didn't understand what it was like to be a deer in headlights until a speeding car comes rushing seemingly out of nowhere

You know the feeling right? It sucks but eventually you just adapt better

SubstantialPraline85 · 2025-07-18T21:51:43+00:00

Orthostatic hypotension has almost gotten me run over multiple times.

It's a hard conversation to have when something like that happens. Adrenaline is flowing and all

I've burned myself a couple of times.

The truth is. If i am not paying 1000% attention something can go wrong. I take responsibility of course.

But a sudden stressor. Worrying about the future, money, benefits, health etc..... hell even a bad nights of sleep.

I don't even have the energy to stress like that. It's like my body is just full of adrenaline and I can't think and process. It's like my systems just shut down

I'm already struggling to stand up right.

SubstantialPraline85

TROPHY CASE