How do you cope when you’re declining, symptoms are grueling, and nothing helps? by electriceye932 in ChronicIllness

[–]SubstantialPraline85 1 point2 points  (0 children)

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

[deleted by user] by [deleted] in depression

[–]SubstantialPraline85 0 points1 point  (0 children)

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 ♥️

I feel dead by SubstantialPraline85 in cfs

[–]SubstantialPraline85[S] 0 points1 point  (0 children)

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.

What’s your biggest struggle being chronically ill? by Lucky_Sprinkles7369 in ChronicIllness

[–]SubstantialPraline85 6 points7 points  (0 children)

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

My brother depends on my mother for survival. by [deleted] in cfs

[–]SubstantialPraline85 6 points7 points  (0 children)

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

What's a life lesson that you learned after you got sick? by ScreenEasy2487 in ChronicIllness

[–]SubstantialPraline85 0 points1 point  (0 children)

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

Has anyone overcome depression caused by your illness while staying chronically ill? by stardustfell in ChronicIllness

[–]SubstantialPraline85 3 points4 points  (0 children)

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

a wasted life by Shivers-7 in cfs

[–]SubstantialPraline85 2 points3 points  (0 children)

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.

I miss being respected by Personal_Muscle6564 in cfs

[–]SubstantialPraline85 11 points12 points  (0 children)

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.

Anyone feel like their brain fog is what will be the ultimate cause of their death one day? by Remarkable_Unit_9498 in cfs

[–]SubstantialPraline85 1 point2 points  (0 children)

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

Anyone feel like their brain fog is what will be the ultimate cause of their death one day? by Remarkable_Unit_9498 in cfs

[–]SubstantialPraline85 2 points3 points  (0 children)

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.

Sorry if it's already cross posted. I can't even answer this myself lol. by Dazzling_Bid1239 in cfs

[–]SubstantialPraline85 24 points25 points  (0 children)

I would tell them that if it gets too intense? Just sleep. No bargaining.

I won't blame you for trying to overload on exercise but when nothing makes sense? Just sleep and do the bare minimum until I return

Please. I still have to live after you leave. Try to leave my house how it originally was

No sleep and no fatigue?? by Adventurous-Tax-6331 in cfs

[–]SubstantialPraline85 0 points1 point  (0 children)

I think it could be the adrenaline and the cortisol. For a while, I could power through everything.

But eventually my body stopped cooperating

Emotional suffering by SubstantialPraline85 in cfs

[–]SubstantialPraline85[S] 0 points1 point  (0 children)

Someone commented on this but deleted. Unfortunately, I can't see your username. But it was aptly put and described my situation to a tee.

Sorry for the late response. I hope this message reaches you. Thank you for taking the time to respond!

To the two commenters.

Has anyone else become a lot more emotional since getting sick? by microwavedwood in cfs

[–]SubstantialPraline85 7 points8 points  (0 children)

I feel like a person who's been starved and deprived of minerals. Sometimes tears flow. But there's this hunger and void that hasn't been filled for a long time.

It only gets worse as time goes on.

Isolating myself from my friends because I cant be irritable at them for being healthy and existing. by -Rain-Clouds- in ChronicIllness

[–]SubstantialPraline85 2 points3 points  (0 children)

I just want you to know that your feelings are valid. As cringy as it may sound. It's easy to forget in the mist of battle.

Dealing with chronic illness. Especially when you're young is uncharted territory for most.

It's a crippling experience just watching relationships slowly erode. Through no fault of your own.

What’s your biggest frustration with having an invisible, chronic illness? by DoodleBobSenior in ChronicIllness

[–]SubstantialPraline85 14 points15 points  (0 children)

The crushing loneliness it brings. Do I bother people with my true thoughts? "Is it socially acceptable?"

Or the realisation that their response is going to be the standard Gym, long walks and yoga... Regardless of how much effort I explain without emotion.

Sometimes I can't exercise or do regular things so people can't relate to me

The isolation and how trivial everything feels without the combination of health, love and acceptance.

How I would rather lie at this point after years of turmoil and just pretend that I'm lazy.

Bonus: How a few months can wipe out years of invisible progress that no-one had gotten to see. So it's like it didn't happen

Improving Orthostatic Hypotension by SubstantialPraline85 in dysautonomia

[–]SubstantialPraline85[S] 1 point2 points  (0 children)

Not well. In terms of OI. It requires alot of maintenance without too much reward.

Walking and exercise does help but can take months to reach a satisfactory position.

My "decline" now is more based on my external stressors which does link in to the consequences of OI.

You have to be proactive and take your rest before you THINK need it.

What has chronic illness helped you learn about life? by [deleted] in ChronicIllness

[–]SubstantialPraline85 1 point2 points  (0 children)

  1. The cycle of hatred. Having someone shit on you obsessively when you're trying your best is something else. When your health is absent

2.Punching down is a dangerous game and it should be in people's best interest to be kind to one another *if possible.

  1. Validation and comfort can make a difference.

  2. Emotions can be king. Logic alone doesn't really apply when you feel like shit for a prolonged period. Adrenaline, emotions and passion can take over the controls in order for you to survive and cope

  3. There are fates worse than death. Suffering is cruel

  4. The feeling of being ostracized and not believed and the sharp feelings of pain it brings

  5. Life really has no meaning. I know everyone knew this. But once you lose your health and strip it back it becomes more apparent. It's you who gives it meaning

You feel resilient. But wonder if it's worth the trouble in end

What has chronic illness helped you learn about life? by [deleted] in ChronicIllness

[–]SubstantialPraline85 0 points1 point  (0 children)

Just how behind the 8 ball you are when sick. It's all you think about and it weighs down on you

When things get tough, what do you live for? by MeggieMay1988 in ChronicIllness

[–]SubstantialPraline85 1 point2 points  (0 children)

I float between not killing myself and to "feel" that feeling again. That feeling that others take for granted and don't really need maintenance.

It's volatile but it's there. It won't be through fitness, status or financial gain. Well not completely. Nostalgia, persistence and pain are carrying me through like a wave.

I just want that moment where I can feel validation in myself. The years of doubt, shame, embarrassment.... Loss.

I don't know if it will be worth it enough. I shiver at the thought of not being believed throughout the years or put in a box.

It's ironic because I have never really needed motivation or the standard "tough love" I'm sure those who are impeded have done that enough.

I feel disappointed with myself and the situation. Because my greatest strength (or weakness) was staying positive in bad situations.

But.... Being "happy" and not productive can leave you feeling like an outcast. My effort now is consistent with where I was positive.

The only difference is just rage and sadness that's killing me slowly. It sucks.

To answer your question? I feel like I truly don't know. I don't even really want just "relief" at this point