Vent Post: I Just want my life back

Hotlongs

Hotlongs

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After attempting a large breakfast today, I've hit what feels like a major crash, and I'm left feeling completely defeated. For hours I've been lying in bed, utterly exhausted and spaced out, as if I might pass out at any moment from sheer fatigue.

It's hard to accept that this is my reality. I had been so near to turning my health and my life around. Over a month ago, before I fell ill, I was actively working to improve my health. I've struggled with being overweight for basically my whole life, but lately I'd been putting in real effort to be more active, build my stamina, and stick to a healthy routine. I had more energy... and then I got sick. Now all of that seems like a different lifetime. My life is in ruins, and it feels hopeless, no matter how much I rest, take supplements, drink water, or follow any other guidance my doctor has offered so far.

I long for time with my partner that doesn't mean sitting together in the ER or at home in bed, watching TV while anxious about my health. I miss being close with him. I miss playing video games. I miss taking walks and playing Pokémon GO. I miss creating art. I feel like an empty shell, and when I see myself in the mirror, it's like looking at a stranger.



During a crash, my brain feels swollen. I can't think clearly. My health anxiety and fight-or-flight responses dictate my life. This has been straining my relationships and isolating me more each day. After developing post-viral issues, I am not myself.

I just want to feel better. I'm suffering and desperate for any hint of improvement. Desperate for answers. Wishing for some magic cure to fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this coming Monday, but I'm fairly sure it's just a consultation and no tests will be done. So, more waiting and uncertainty. I'm really eager to rule out heart damage or anything serious. I still haven't had an MRI of my head, even though I've been to the ER multiple times with head pressure, fatigue, and shortness of breath. I recently started seeing a neurologist to set up a sleep study soon, so I might try to get their opinion on a possible MRI.

Sorry for the long rant. I feel like I have no one to really talk to about how I'm feeling without making them feel guilty or stressed out, and I need to feel less alone in my head. I appreciate anyone who reads and comments. Thank you.
 
Living with a long-term condition wears you down and leaves you feeling alone. It's awful that you're going through this. From what I understand, there are cases where a social worker gets assigned to patients to assist with figuring out the system and available services. Could that be something you can access? I'm not sure whether that's limited to people being sent home from a hospital stay.

Asking my PCP about supportive care is something I would do without hesitation. You're worthy of that.
 
I've been in that spot too, and it's awful. If I were you, I'd keep pushing my doctor to sort it out and lend a hand. Fingers crossed you get some clarity before long.
 
What you're carrying sounds unbelievably heavy, and feeling drained by it makes complete sense. Anyone would be overwhelmed by what you're describing. The person you were isn't gone — you're simply caught in an extremely difficult stretch that's demanding a lot from you.

Grieving the routines you used to have, your partner, the hobbies you loved… that's genuine loss. It doesn't turn you into a burden. It makes you human.

Those appointments coming up are something I'm glad about — moving slowly is still moving toward answers. Clarity and relief are things you deserve.

Right now, you aren't facing this by yourself. We're here alongside you, and you don't have to carry all of this alone.
 
FlowerFairy said:

I understand what you're going through, Shug — sending good thoughts in your direction!
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I appreciate the kindness. I'm just attempting to handle things one day at a time, though certain days are extremely difficult.

SeaGypsy said:

I've been in that spot too, and it's awful. If I were you, I'd keep pushing my doctor to sort it out and lend a hand. Fingers crossed you get some clarity before long.
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My PCP seems indifferent and just tells me to do graded exercise. Before the pandemic, even though I was slightly overweight, I was very fit — I cycled across China, over the Tibetan Plateau, all the way to Lhasa, and I rode daily, practiced pilates, and was a dancer. These days, even simple cardio or yoga leaves me dizzy. When I try to push through, it feels like a massive weight crushes me. Despite my best efforts to keep training, I feel as though my muscles have vanished.

HereKittyKitty said:

Living with a long-term condition wears you down and leaves you feeling alone. It's awful that you're going through this. From what I understand, there are cases where a social worker gets assigned to patients to assist with figuring out the system and available services. Could that be something you can access? I'm not sure whether that's limited to people being sent home from a hospital stay.

Asking my PCP about supportive care is something I would do without hesitation. You're worthy of that.
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I'll look into what options exist. My partner is wonderful and speaks up for me when what I say goes in one ear and out the other with certain doctors. I've had panels done and the blood tests show nothing, so at times they treat me as if I'm fabricating it. Having someone present who witnesses how my illness affects me is the only way I've managed to get more referrals.

AcadiaPeptides said:

What you're carrying sounds unbelievably heavy, and feeling drained by it makes complete sense. Anyone would be overwhelmed by what you're describing. The person you were isn't gone — you're simply caught in an extremely difficult stretch that's demanding a lot from you.

Grieving the routines you used to have, your partner, the hobbies you loved… that's genuine loss. It doesn't turn you into a burden. It makes you human.

Those appointments coming up are something I'm glad about — moving slowly is still moving toward answers. Clarity and relief are things you deserve.

Right now, you aren't facing this by yourself. We're here alongside you, and you don't have to carry all of this alone.
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Thanks. A few of these doctors leave me questioning how they ever passed medical school.

My T-cells are slightly below normal, but the trend keeps declining and my doctor appears completely unconcerned because it's only just under the normal range. I catch illnesses far more easily. Standing in a hot shower is hard. Foods that used to be fine now make me terribly ill.

It's all just a mess.
 
Some of what you're going through looks familiar to me. A lot of different things could be behind it, but there's a real chance that lifestyle adjustments would fix it — or at minimum let you get through the day more easily, which buys you room to hunt for what's actually causing it.

A lot of doctors only look at numbers on a page. They don't ask how or why your body is struggling, and whether your particular case matches the template they were trained to spot decides everything: you either walk out with a prescription or you're sent home, still not knowing what's really wrong with you. In all their years of training, physicians devote under 1% of lecture time to nutrition. If they don't grasp what fuels the body or how it responds to food, can they really claim to understand how the body works?

What you're describing sounds like what I went through — severe crashes and feeling ill after eating. Around that time I also had other digestion issues, before and after. Changing my diet cleared up most of them. It took a while since I wasn't changing things in any organized way, but you can get there quicker by picking one of the more restrictive elimination diets. So what's your diet like, and which foods set off your problems?
 
Flexon said:

Some of what you're going through looks familiar to me. A lot of different things could be behind it, but there's a real chance that lifestyle adjustments would fix it — or at minimum let you get through the day more easily, which buys you room to hunt for what's actually causing it.

A lot of doctors only look at numbers on a page. They don't ask how or why your body is struggling, and whether your particular case matches the template they were trained to spot decides everything: you either walk out with a prescription or you're sent home, still not knowing what's really wrong with you. In all their years of training, physicians devote under 1% of lecture time to nutrition. If they don't grasp what fuels the body or how it responds to food, can they really claim to understand how the body works?

What you're describing sounds like what I went through — severe crashes and feeling ill after eating. Around that time I also had other digestion issues, before and after. Changing my diet cleared up most of them. It took a while since I wasn't changing things in any organized way, but you can get there quicker by picking one of the more restrictive elimination diets. So what's your diet like, and which foods set off your problems?
Click to expand...
After giving FODMAP and the elimination diet a shot, I'm now doing keto. Loads of vegetables and carb-heavy foods now wreck me. Keto has me feeling better than I have in ages, and I hadn't eaten anything loaded with carbs except for a "keto tortilla" with 10g net carbs, which never bothered me before. My meal was just eggs, bacon, and a few sugar-free, carb-free sauces. I've prepared that exact meal in the past with no problems. To cover whatever I'm lacking as best I can, I take methylated vitamin complexes.

Fasting is when I feel my best.

Oh, and I've stuck with keto for 3 months and dropped 30lbs without glps.
 
Hotlongs said:

After attempting a large breakfast today, I've hit what feels like a major crash, and I'm left feeling completely defeated. For hours I've been lying in bed, utterly exhausted and spaced out, as if I might pass out at any moment from sheer fatigue.

It's hard to accept that this is my reality. I had been so near to turning my health and my life around. Over a month ago, before I fell ill, I was actively working to improve my health. I've struggled with being overweight for basically my whole life, but lately I'd been putting in real effort to be more active, build my stamina, and stick to a healthy routine. I had more energy... and then I got sick. Now all of that seems like a different lifetime. My life is in ruins, and it feels hopeless, no matter how much I rest, take supplements, drink water, or follow any other guidance my doctor has offered so far.

I long for time with my partner that doesn't mean sitting together in the ER or at home in bed, watching TV while anxious about my health. I miss being close with him. I miss playing video games. I miss taking walks and playing Pokémon GO. I miss creating art. I feel like an empty shell, and when I see myself in the mirror, it's like looking at a stranger.



During a crash, my brain feels swollen. I can't think clearly. My health anxiety and fight-or-flight responses dictate my life. This has been straining my relationships and isolating me more each day. After developing post-viral issues, I am not myself.

I just want to feel better. I'm suffering and desperate for any hint of improvement. Desperate for answers. Wishing for some magic cure to fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this coming Monday, but I'm fairly sure it's just a consultation and no tests will be done. So, more waiting and uncertainty. I'm really eager to rule out heart damage or anything serious. I still haven't had an MRI of my head, even though I've been to the ER multiple times with head pressure, fatigue, and shortness of breath. I recently started seeing a neurologist to set up a sleep study soon, so I might try to get their opinion on a possible MRI.

Sorry for the long rant. I feel like I have no one to really talk to about how I'm feeling without making them feel guilty or stressed out, and I need to feel less alone in my head. I appreciate anyone who reads and comments. Thank you.
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I'm really sorry that you're dealing with all of this. Chronic illness truly is the worst thing. Anything I might suggest would probably be awful and come from someone with no qualifications, but one thing I can say for sure is that you made the right call by sharing here. It takes real strength and courage to reach out when you're at the very bottom, and that is what convinces me, with my whole heart, that you will make it through this. You have both my empathy and my admiration. Sending you all of my good thoughts and well wishes.
 
Hotlongs said:

Flexon said:

Some of what you're going through looks familiar to me. A lot of different things could be behind it, but there's a real chance that lifestyle adjustments would fix it — or at minimum let you get through the day more easily, which buys you room to hunt for what's actually causing it.

A lot of doctors only look at numbers on a page. They don't ask how or why your body is struggling, and whether your particular case matches the template they were trained to spot decides everything: you either walk out with a prescription or you're sent home, still not knowing what's really wrong with you. In all their years of training, physicians devote under 1% of lecture time to nutrition. If they don't grasp what fuels the body or how it responds to food, can they really claim to understand how the body works?

What you're describing sounds like what I went through — severe crashes and feeling ill after eating. Around that time I also had other digestion issues, before and after. Changing my diet cleared up most of them. It took a while since I wasn't changing things in any organized way, but you can get there quicker by picking one of the more restrictive elimination diets. So what's your diet like, and which foods set off your problems?
Click to expand...
After giving FODMAP and the elimination diet a shot, I'm now doing keto. Loads of vegetables and carb-heavy foods now wreck me. Keto has me feeling better than I have in ages, and I hadn't eaten anything loaded with carbs except for a "keto tortilla" with 10g net carbs, which never bothered me before. My meal was just eggs, bacon, and a few sugar-free, carb-free sauces. I've prepared that exact meal in the past with no problems. To cover whatever I'm lacking as best I can, I take methylated vitamin complexes.

Fasting is when I feel my best.

Oh, and I've stuck with keto for 3 months and dropped 30lbs without glps.
Click to expand...
Going keto is likely a solid overall approach, though fine-tuning may be necessary before you see the complete benefit. I went through multiple versions of low carb and keto myself, and it took time to reach my current state — not flawless, but mostly okay. There are so many sensitivities and digestive conditions that vary from person to person. The most rigorous elimination diet might be what you need: only beef, salt, and water for 1 to 2 months, after which you reintroduce items in a methodical way, 1 at a time, gradually. A lot of products marketed as 'keto' contain assorted ingredients that could trigger issues for you. Pesticides — both synthetic and the natural ones plants produce to fend off creatures that would eat them — are abundant in vegetables. Some of us simply don't tolerate certain of those defense mechanisms well. Take eggs: the albumin in them is problematic for some individuals. Fat from different sources can act differently. Even medications or supplements may be an issue, not only through their active ingredients but also via binders or fillers.

I get where you're coming from — I've been through this as well, and it can push you toward despair, but I believe you'll identify what's triggering your problems. Lots of people have done it, and you will too.
 
This reminds me so strongly of my

Mom's situation. She lived with chronic fatigue immune dysfunction, and it took years before she found a doctor who specialized in it and could offer a little help. Not much made a difference, but having a doctor who understood her condition and specialized did help. I would get so angry when nobody listened to her. I felt useless, since there was almost nothing I could do for her.
 
Being sick is awful. I've dealt with recurrent depression that at times was severe, plus an autoimmune condition, so I have some familiarity with this.

When you're unwell and nobody can tell you what's wrong—much less offer treatment that actually works—it can be maddening. Still, the reality is that some health issues are simply difficult to figure out. A clear-cut diagnosis isn't always available, and the only path forward may be waiting, observing, tracking, and testing until the picture gets less murky.

One possibility that comes to mind is that depression could be the core issue, or one piece of it, or a reaction to feeling sick. I have no way of knowing—there's far too little information for me to judge—but it may be something to think about, particularly if this has occurred before. Another option is that your distress and stress about being ill without answers is entirely understandable and appropriate.
 
It hurts to hear what you're dealing with, and my heart goes out to both you and your partner. I recognize that helplessness of seeing a loved one struggle while the doctors remain clueless about the cause or the cure.

I don't have anything informed to offer.

Have you tried communities for ME/CFS patients? A friend's mom had a strange cluster of symptoms following a viral infection, and she picked up some helpful coping strategies from reading there. She isn't at 100% anymore and has made peace with that, but she can function again.
 
myopicmystic said:

It hurts to hear what you're dealing with, and my heart goes out to both you and your partner. I recognize that helplessness of seeing a loved one struggle while the doctors remain clueless about the cause or the cure.

I don't have anything informed to offer.

Have you tried communities for ME/CFS patients? A friend's mom had a strange cluster of symptoms following a viral infection, and she picked up some helpful coping strategies from reading there. She isn't at 100% anymore and has made peace with that, but she can function again.
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There are a few people in my circle who've received an ME/CFS diagnosis. Right now, both of them appear to be dealing with a lower quality of life than I am. I've deliberately avoided going deeper into symptoms or resources with them, since my plan was to wait until the cardiology and neurology appointments produced something concrete, so I wouldn't add stress before that.

A moment ago I looked at MyChart, and it turns out my POTS tilt-test is scheduled for this week. Whatever the outcome, that gives me some hope.
 
Hotlongs said:

After attempting a large breakfast today, I've hit what feels like a major crash, and I'm left feeling completely defeated. For hours I've been lying in bed, utterly exhausted and spaced out, as if I might pass out at any moment from sheer fatigue.

It's hard to accept that this is my reality. I had been so near to turning my health and my life around. Over a month ago, before I fell ill, I was actively working to improve my health. I've struggled with being overweight for basically my whole life, but lately I'd been putting in real effort to be more active, build my stamina, and stick to a healthy routine. I had more energy... and then I got sick. Now all of that seems like a different lifetime. My life is in ruins, and it feels hopeless, no matter how much I rest, take supplements, drink water, or follow any other guidance my doctor has offered so far.

I long for time with my partner that doesn't mean sitting together in the ER or at home in bed, watching TV while anxious about my health. I miss being close with him. I miss playing video games. I miss taking walks and playing Pokémon GO. I miss creating art. I feel like an empty shell, and when I see myself in the mirror, it's like looking at a stranger.



During a crash, my brain feels swollen. I can't think clearly. My health anxiety and fight-or-flight responses dictate my life. This has been straining my relationships and isolating me more each day. After developing post-viral issues, I am not myself.

I just want to feel better. I'm suffering and desperate for any hint of improvement. Desperate for answers. Wishing for some magic cure to fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this coming Monday, but I'm fairly sure it's just a consultation and no tests will be done. So, more waiting and uncertainty. I'm really eager to rule out heart damage or anything serious. I still haven't had an MRI of my head, even though I've been to the ER multiple times with head pressure, fatigue, and shortness of breath. I recently started seeing a neurologist to set up a sleep study soon, so I might try to get their opinion on a possible MRI.

Sorry for the long rant. I feel like I have no one to really talk to about how I'm feeling without making them feel guilty or stressed out, and I need to feel less alone in my head. I appreciate anyone who reads and comments. Thank you.
Click to expand...
It's truly heartbreaking to hear what you're dealing with — that level of overwhelm is so much to hold 😔

Having the crash and the exhaustion and the foggy thinking, while also fighting off worry and irritation… carrying all of that simultaneously is enormous. And of course you long for how things used to be — that line really struck a chord with me.

There's a good chance I'm off base here, so treat this only as one person's perspective, but certain things you mention echo a pattern I've lived through, in which bodily struggles and a form of depression kept amplifying one another.

I don't mean that in any dismissive "it's imaginary" sense — rather, your body is under strain, your mind is grappling with something genuinely difficult, and each one can drag the other down further.

What helped me was to approach both gently, with tons of patience, and to stop demanding that I "solve everything" at once.

Waiting like this wears you down, I know, but you're already giving it everything you've got.

Even when it doesn't feel that way, you aren't facing this by yourself 🫶
 
Mara_aa said:

Hotlongs said:

After attempting a large breakfast today, I've hit what feels like a major crash, and I'm left feeling completely defeated. For hours I've been lying in bed, utterly exhausted and spaced out, as if I might pass out at any moment from sheer fatigue.

It's hard to accept that this is my reality. I had been so near to turning my health and my life around. Over a month ago, before I fell ill, I was actively working to improve my health. I've struggled with being overweight for basically my whole life, but lately I'd been putting in real effort to be more active, build my stamina, and stick to a healthy routine. I had more energy... and then I got sick. Now all of that seems like a different lifetime. My life is in ruins, and it feels hopeless, no matter how much I rest, take supplements, drink water, or follow any other guidance my doctor has offered so far.

I long for time with my partner that doesn't mean sitting together in the ER or at home in bed, watching TV while anxious about my health. I miss being close with him. I miss playing video games. I miss taking walks and playing Pokémon GO. I miss creating art. I feel like an empty shell, and when I see myself in the mirror, it's like looking at a stranger.



During a crash, my brain feels swollen. I can't think clearly. My health anxiety and fight-or-flight responses dictate my life. This has been straining my relationships and isolating me more each day. After developing post-viral issues, I am not myself.

I just want to feel better. I'm suffering and desperate for any hint of improvement. Desperate for answers. Wishing for some magic cure to fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this coming Monday, but I'm fairly sure it's just a consultation and no tests will be done. So, more waiting and uncertainty. I'm really eager to rule out heart damage or anything serious. I still haven't had an MRI of my head, even though I've been to the ER multiple times with head pressure, fatigue, and shortness of breath. I recently started seeing a neurologist to set up a sleep study soon, so I might try to get their opinion on a possible MRI.

Sorry for the long rant. I feel like I have no one to really talk to about how I'm feeling without making them feel guilty or stressed out, and I need to feel less alone in my head. I appreciate anyone who reads and comments. Thank you.
Click to expand...
It's truly heartbreaking to hear what you're dealing with — that level of overwhelm is so much to hold 😔

Having the crash and the exhaustion and the foggy thinking, while also fighting off worry and irritation… carrying all of that simultaneously is enormous. And of course you long for how things used to be — that line really struck a chord with me.

There's a good chance I'm off base here, so treat this only as one person's perspective, but certain things you mention echo a pattern I've lived through, in which bodily struggles and a form of depression kept amplifying one another.

I don't mean that in any dismissive "it's imaginary" sense — rather, your body is under strain, your mind is grappling with something genuinely difficult, and each one can drag the other down further.

What helped me was to approach both gently, with tons of patience, and to stop demanding that I "solve everything" at once.

Waiting like this wears you down, I know, but you're already giving it everything you've got.

Even when it doesn't feel that way, you aren't facing this by yourself 🫶
Click to expand...
I appreciate the kind words. Depression isn't my baseline, so a psychosomatic factor doesn't seem likely to me, and my partner feels the same way. The real struggle comes when you keep hitting dead ends.

This week I've got a lot of testing lined up, so I'm genuinely optimistic about being able to cross some things off the list or, ideally, find a lead toward a meaningful dx.

Today it's my cardiology/tilt table test!
 
Hotlongs said:

Mara_aa said:

Hotlongs said:

After attempting a large breakfast today, I've hit what feels like a major crash, and I'm left feeling completely defeated. For hours I've been lying in bed, utterly exhausted and spaced out, as if I might pass out at any moment from sheer fatigue.

It's hard to accept that this is my reality. I had been so near to turning my health and my life around. Over a month ago, before I fell ill, I was actively working to improve my health. I've struggled with being overweight for basically my whole life, but lately I'd been putting in real effort to be more active, build my stamina, and stick to a healthy routine. I had more energy... and then I got sick. Now all of that seems like a different lifetime. My life is in ruins, and it feels hopeless, no matter how much I rest, take supplements, drink water, or follow any other guidance my doctor has offered so far.

I long for time with my partner that doesn't mean sitting together in the ER or at home in bed, watching TV while anxious about my health. I miss being close with him. I miss playing video games. I miss taking walks and playing Pokémon GO. I miss creating art. I feel like an empty shell, and when I see myself in the mirror, it's like looking at a stranger.



During a crash, my brain feels swollen. I can't think clearly. My health anxiety and fight-or-flight responses dictate my life. This has been straining my relationships and isolating me more each day. After developing post-viral issues, I am not myself.

I just want to feel better. I'm suffering and desperate for any hint of improvement. Desperate for answers. Wishing for some magic cure to fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this coming Monday, but I'm fairly sure it's just a consultation and no tests will be done. So, more waiting and uncertainty. I'm really eager to rule out heart damage or anything serious. I still haven't had an MRI of my head, even though I've been to the ER multiple times with head pressure, fatigue, and shortness of breath. I recently started seeing a neurologist to set up a sleep study soon, so I might try to get their opinion on a possible MRI.

Sorry for the long rant. I feel like I have no one to really talk to about how I'm feeling without making them feel guilty or stressed out, and I need to feel less alone in my head. I appreciate anyone who reads and comments. Thank you.
Click to expand...
It's truly heartbreaking to hear what you're dealing with — that level of overwhelm is so much to hold 😔

Having the crash and the exhaustion and the foggy thinking, while also fighting off worry and irritation… carrying all of that simultaneously is enormous. And of course you long for how things used to be — that line really struck a chord with me.

There's a good chance I'm off base here, so treat this only as one person's perspective, but certain things you mention echo a pattern I've lived through, in which bodily struggles and a form of depression kept amplifying one another.

I don't mean that in any dismissive "it's imaginary" sense — rather, your body is under strain, your mind is grappling with something genuinely difficult, and each one can drag the other down further.

What helped me was to approach both gently, with tons of patience, and to stop demanding that I "solve everything" at once.

Waiting like this wears you down, I know, but you're already giving it everything you've got.

Even when it doesn't feel that way, you aren't facing this by yourself 🫶
Click to expand...
I appreciate the kind words. Depression isn't my baseline, so a psychosomatic factor doesn't seem likely to me, and my partner feels the same way. The real struggle comes when you keep hitting dead ends.

This week I've got a lot of testing lined up, so I'm genuinely optimistic about being able to cross some things off the list or, ideally, find a lead toward a meaningful dx.

Today it's my cardiology/tilt table test!
Click to expand...
Hearing that depression isn't your baseline is genuinely reassuring—thanks for making that clear.

Running into dead ends? Yeah, I know exactly what that feels like, and honestly it might be the most maddening piece of all this.

Still, having tests on the schedule is a real positive. Even that step can move things, because you're no longer stuck in the unknown—you're actively chasing answers.

Good luck with the tilt table test today, I'm pulling for you!
 
Got an official POTS diagnosis today. They put me on Fludrocortisone, and I'm a bit nervous about whether it might clash with the tirz I've been on. I looked through the forum and found a thread indicating there shouldn't be any interaction, but if there's anything I'm missing, please tell me.
 
I get those feelings completely, and it breaks my heart that you're going through this as well. Mine began when I was just 22 — these crippling, long-term health problems. There are so many days I'm stuck indoors since even moving brings pain. A "normal" life isn't something I have either, and that's awful. My heart goes out to you.
 
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