Vent Post: I Just want my life back

[Hotlongs]

Today, I've been experiencing what feels like a big crash after trying to eat a big breakfast, and I'm feeling so defeated. I've been in bed for hours, feeling so fatigued and zoned out, like I could faint at any second from exhaustion.

I cannot believe this is happening to me. I was so close to turning my life and health around. Before getting sick over a month ago, I was taking steps to really improve my health. I've been overweight pretty much my entire life, but recently I was really making efforts to be more active, work on my stamina, and I had a healthy routine. I felt more energized... and then I got sick. All of that feels like a past life now. My life is now in shambles, and it feels like there's no way out, no matter how much I try to rest, take supplements, stay hydrated, or follow whatever other advice my doctor has given me so far.

I miss spending time with my partner that doesn't involve us both sitting in the ER or at home in bed watching TV while being stressed out about my health issues. I miss being intimate with him. I miss playing video games. I miss going for walks and playing Pokémon GO. I miss making art. I feel like a shell of myself, and when I look in the mirror, it doesn't feel like me anymore.

When I am on a crash, my brain feels inflamed. I can't think straight. My health anxiety and fight-or-flight responses control my life. It has been putting a strain on my relationships and isolating me more and more every day. I am not myself after getting post-viral issues.

I just want to feel better. I'm suffering and so desperate for any signs of improvement. Desperate for answers. Wishing there was some kind of magic cure that could fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this upcoming Monday, but I'm pretty sure it's only a consultation and no testing will be done. So, more waiting and uncertainty. I'm really eager to be able to rule out heart damage or anything serious. I still haven't had an MRI of my head, despite being in 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.

 

[FlowerFairy]

I’ve been there, Shug- sending good wishes your way!

 

[HereKittyKitty]

Chronic illness is exhausting and isolating. I'm sorry this is happening. I've heard sometimes patients are assigned social workers to help navigate the system and services. Is this an option available to you? I don't know if this only happens for inpatients being discharged.

I would definitely ask my PCP for supportive care. You deserve it.

 

[SeaGypsy]

I have been there and it sucks. I would stay on my Dr to figure it out and help. I hope you get some answers soon.

 

[AcadiaPeptides]

It sounds like you’re going through something incredibly heavy, and it makes sense that you feel worn down. What you’re describing would overwhelm anyone. You haven’t lost who you were — you’re just stuck in a really hard moment that’s taking a lot out of you.
Missing your old routines, your partner, your hobbies… that’s real grief. And it doesn’t make you a burden. It makes you human.
I’m glad you have those upcoming appointments — even slow steps are still steps toward answers. You deserve clarity and relief.
You’re not alone right now. We are here with you, and you don’t have to hold all of this by yourself.

 

[Hotlongs]

I’ve been there, Shug- sending good wishes your way!

Thank you for the kind words. I am just trying to take it day by day but some days really hit me hard.

I have been there and it sucks. I would stay on my Dr to figure it out and help. I hope you get some answers soon.

It feels like my PCP doesn't care and only recommends graded exercise. I used to be so fit despite being a little overweight, I biked across China across the Tibetan Plateau into Lhasa just before the pandemic and biked every day, did pilates, was a dancer. Now I struggle to get through basic cardio or yoga without feeling dizzy. If I push myself, I physically get hit by a ton of bricks. I feel like I have lost my muscles despite trying to continue training to the best of my ability.

Chronic illness is exhausting and isolating. I'm sorry this is happening. I've heard sometimes patients are assigned social workers to help navigate the system and services. Is this an option available to you? I don't know if this only happens for inpatients being discharged.

I would definitely ask my PCP for supportive care. You deserve it.

I will see what is available. My partner is so sweet and advocates for me when what I describe goes into one ear and other the other of some of these doctors. I have had panels run and nothing comes back on the blood tests, so they act like I am making it up sometimes. Having someone in the room that sees the effects of my illness is the only way that I feel like I have had success in getting additional referrals.

It sounds like you’re going through something incredibly heavy, and it makes sense that you feel worn down. What you’re describing would overwhelm anyone. You haven’t lost who you were — you’re just stuck in a really hard moment that’s taking a lot out of you.
Missing your old routines, your partner, your hobbies… that’s real grief. And it doesn’t make you a burden. It makes you human.
I’m glad you have those upcoming appointments — even slow steps are still steps toward answers. You deserve clarity and relief.
You’re not alone right now. We are here with you, and you don’t have to hold all of this by yourself.

Thank you. Some of these doctors make me wonder how they got through medical school.

I have low T-cells slightly below normal, but the trendline keeps going down and my doctor does not seem to care about it at all since it is now barely below normal. I get sick so much more easily. I struggle to stand in hot showers. Foods I could eat before now make me horribly sick.

It is just a mess.

 

[HereKittyKitty]

Oh honey...

 

[Flexon]

I recognize some of the symptoms you are experiencing. The thing that's happening to you can be caused by many different factors, but there's a significant possibility that you can resolve your problems with lifestyle changes, or at least make it easier for you to function, giving you space to look for causes of your problems.

Many doctors see numeric values on paper, not how and why your organism is having problems, and depending on your situation, does or doesn't it fit the pattern they were programed to recognize, you will get some drugs or be sent home, without true understanding what your problem truly is. Doctors during their education spend less than 1% of their total lecture hours learning about nutrition. Do they understand how the body functions without understanding what and how fuels the body and how organism reacts to food?

Your symptoms resemble what I experienced, hard crashes and feeling sick after meal. Before and after that I had other digestive problems. Most were resolved with diet change. It took a while, because I wasn't systematically making changes to my diet, but it's possible to do it faster, by trying one of the stricter elimination diets. What do you eat, what foods are making you problems?

 

[Hotlongs]

I recognize some of the symptoms you are experiencing. The thing that's happening to you can be caused by many different factors, but there's a significant possibility that you can resolve your problems with lifestyle changes, or at least make it easier for you to function, giving you space to look for causes of your problems.

Many doctors see numeric values on paper, not how and why your organism is having problems, and depending on your situation, does or doesn't it fit the pattern they were programed to recognize, you will get some drugs or be sent home, without true understanding what your problem truly is. Doctors during their education spend less than 1% of their total lecture hours learning about nutrition. Do they understand how the body functions without understanding what and how fuels the body and how organism reacts to food?

Your symptoms resemble what I experienced, hard crashes and feeling sick after meal. Before and after that I had other digestive problems. Most were resolved with diet change. It took a while, because I wasn't systematically making changes to my diet, but it's possible to do it faster, by trying one of the stricter elimination diets. What do you eat, what foods are making you problems?

I am on the keto diet after trying FODMAP and the elimination diet. There are so many veggies and carb rich foods that kick my buns now. I have felt the best I have in so long on keto and did not eat anything carb rich aside from a 10g net carb "keto tortilla" that has not caused issues previously. I just had eggs, some sugar-free and carb-free sauces, and bacon. I have made the same meal before without issues. I take methylated vitamin complexes to compensate for what I am missing to the best of my ability.

I feel my best fasting.

Oh I also have been doing keto for 3 months and have lost 30lbs without glps.

 

[catwitch]

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.

Oh, I’m so sorry you’re going through this. Chronic illness is the absolute worst. Any advice I would give would likely by terrible and unqualified, but I will say you absolutely did the right thing by posting here. Reaching out from the pit of despair takes strength and courage, and this more than anything makes me believe with my whole heart that you can get through this. You have my empathy, as well as my admiration. Sending all my good thoughts and well wishes.

 

[Flexon]

I am on the keto diet after trying FODMAP and the elimination diet. There are so many veggies and carb rich foods that kick my buns now. I have felt the best I have in so long on keto and did not eat anything carb rich aside from a 10g net carb "keto tortilla" that has not caused issues previously. I just had chicken embryos, some sugar and carb free sauces, and bacon. I have made the same meal before without issues. I take methylated vitamin complexes to compensate for what I am missing to the best of my ability.

I feel my best fasting.

Oh I also have been doing keto for 3 months and have lost 30lbs without glps.

Keto is most probably good general direction, but you might need to tweak it to have the full effect. I tried several low carb and keto variations, it took me a while to get where I'm now, not perfect, but generally fine. People can be sensitive to so many things, have many different digestive issues. You might need to do the strictest elimination diet: beef, salt, and water only, for a month or two, then start reintroducing things systematically, one by one, slowly. Many things that are advertised as 'keto' have various ingredients that can cause you problems. Vegetables are full of pesticides, both manmade and those they naturally use as a way to defend from those who want to eat them. Some of us are just not well adapted to some of those defensive strategies. Eggs for example have albumin that causes problems to some people. Different sources of fat can have different effects. Even drugs or supplements can be a problem, not just the active components, but binders or fillers too.

I understand how you feel, I have gone trough this too, it can lead to desperation, but I know you can find what's causing you problems. Many people did, so will you.

 

[FlowerFairy]

This sounds so much like what my
Mom dealt with. She had chronic fatigue immune dysfunction and it took years to find a doctor who specialized in it and could help a little. There wasn’t much that helped, but having a doctor that knew about her condition and specialized helped. I used to get so angry when no one listened to her. I felt useless because there wasn’t much nothing I could do to help her.

 

[lessthanhalf]

Being ill sucks. Having had recurrent sometimes severe depression and an autoimmune disorder I have had some experience with it.
It can be incredibly frustrating to be unwell and get no answers as to what is going on let alone treatment that helps, but unfortunately sometimes health problems are just hard to work out, and sometimes there is no simple diagnosis to make, and you just have to wait and watch and monitor and test until things become clearer.
The only thing that springs to my mind as a possibility is a depressive illness as the main problem or as part of it or in response to being unwell. I could be completely wrong about that and have nowhere near enough information to make any kind of judgement, but it might be worth considering, especially if it has happened before. It might also be that you are completely reasonably upset and stressed about being unwell with no answers.

 

[myopicmystic]

I’m so sorry that you’re going through this. I feel for you and your partner. I know the feeling of watching someone be ill and suffering while the doctors do not have an idea of what’s going on or how to treat it.

I do not have any educated advice to give.
Have you looked in spaces about patients with ME/CFS? A friends mother experienced a weird constellation of symptoms after a viral illness and found some supportive measures from reading in those places. She’s not back to 100% and has accepted that but she’s back to being functional again.

 

[Hotlongs]

I’m so sorry that you’re going through this. I feel for you and your partner. I know the feeling of watching someone be ill and suffering while the doctors do not have an idea of what’s going on or how to treat it.

I do not have any educated advice to give.
Have you looked in spaces about patients with ME/CFS? A friends mother experienced a weird constellation of symptoms after a viral illness and found some supportive measures from reading in those places. She’s not back to 100% and has accepted that but she’s back to being functional again.

I do have some friends that have been diagnosed with ME/CFS. Their qualities of life both seem worse that mine at the moment. I have been holding off on discussing resources/symptoms more in depth because I was hoping to have something substantial from the cardiology and neurology appointments before stressing them out unduly.

I just checked MyChart and saw I will finally have my tilt-test for POTS this week as well which gives me hope one way or another.

 

[Mara_aa]

Today, I've been experiencing what feels like a big crash after trying to eat a big breakfast, and I'm feeling so defeated. I've been in bed for hours, feeling so fatigued and zoned out, like I could faint at any second from exhaustion.

I cannot believe this is happening to me. I was so close to turning my life and health around. Before getting sick over a month ago, I was taking steps to really improve my health. I've been overweight pretty much my entire life, but recently I was really making efforts to be more active, work on my stamina, and I had a healthy routine. I felt more energized... and then I got sick. All of that feels like a past life now. My life is now in shambles, and it feels like there's no way out, no matter how much I try to rest, take supplements, stay hydrated, or follow whatever other advice my doctor has given me so far.

I miss spending time with my partner that doesn't involve us both sitting in the ER or at home in bed watching TV while being stressed out about my health issues. I miss being intimate with him. I miss playing video games. I miss going for walks and playing Pokémon GO. I miss making art. I feel like a shell of myself, and when I look in the mirror, it doesn't feel like me anymore.

When I am on a crash, my brain feels inflamed. I can't think straight. My health anxiety and fight-or-flight responses control my life. It has been putting a strain on my relationships and isolating me more and more every day. I am not myself after getting post-viral issues.

I just want to feel better. I'm suffering and so desperate for any signs of improvement. Desperate for answers. Wishing there was some kind of magic cure that could fix everything. I feel so frustrated and so alone.

I have a cardiology appointment this upcoming Monday, but I'm pretty sure it's only a consultation and no testing will be done. So, more waiting and uncertainty. I'm really eager to be able to rule out heart damage or anything serious. I still haven't had an MRI of my head, despite being in 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.

I’m really sorry you’re going through this, it sounds incredibly overwhelming 😔
The crash, the fatigue, the brain fog, and at the same time the anxiety and frustration… it’s a lot to carry all at once. And it makes total sense that you’re missing your old life, that part really hit me.

I might be completely wrong, so please take this just as a personal thought, but some of what you’re describing reminds me of something I’ve experienced before, where physical symptoms and a kind of depression ended up feeding into each other.

Not in a “it’s all in your head” way at all, but more like your body is struggling, and your mind is trying to cope with something really hard, and the two can make each other feel worse.

It helped me to gently work on both sides, with a lot of patience and without putting pressure on myself to “fix everything” quickly.

I know the waiting is exhausting, but you’re doing everything you can right now.
You’re not alone in this, even if it feels like it 🫶

 

[Hotlongs]

I’m really sorry you’re going through this, it sounds incredibly overwhelming 😔
The crash, the fatigue, the brain fog, and at the same time the anxiety and frustration… it’s a lot to carry all at once. And it makes total sense that you’re missing your old life, that part really hit me.

I might be completely wrong, so please take this just as a personal thought, but some of what you’re describing reminds me of something I’ve experienced before, where physical symptoms and a kind of depression ended up feeding into each other.

Not in a “it’s all in your head” way at all, but more like your body is struggling, and your mind is trying to cope with something really hard, and the two can make each other feel worse.

It helped me to gently work on both sides, with a lot of patience and without putting pressure on myself to “fix everything” quickly.

I know the waiting is exhausting, but you’re doing everything you can right now.
You’re not alone in this, even if it feels like it 🫶

Thank you for the warm words. My baseline actually isn't depressive, so I don't think there is a psychosomatic element and neither does my partner. It just gets hard when you run into dead ends.
I have a bunch of testing happening this week, so I am actually feeling really positive in so far as to being able to rule out certain things or hopefully have a lead to a meaningful dx.

Today is my cardiology/tilt table test!

 

[Mara_aa]

Thank you for the warm words. My baseline actually isn't depressive, so I don't think there is a psychosomatic element and neither does my partner. It just gets hard when you run into dead ends.
I have a bunch of testing happening this week, so I am actually feeling really positive in so far as to being able to rule out certain things or hopefully have a lead to a meaningful dx.

Today is my cardiology/tilt table test!

I think it’s a really good sign that your baseline isn’t depressive, I’m glad you clarified that.
And I totally get what you mean about hitting dead ends, that’s probably one of the most frustrating parts.

It’s great though that you have testing lined up, that alone can shift things a bit, just moving from uncertainty to actually looking for answers.
Fingers crossed for today’s tilt table test, I’m really rooting for you!

 

[Hotlongs]

Officially diagnosed with POTS. Prescribed Fludrocortisone and am a little scared there could be an interaction with the tirz I have been taking. I searched the forum and saw a thread saying there shouldn't be an interaction but if anyone knows something I do not, please let me know.

 

[GTS97]

I relate to those feelings so much and I’m so sorry you’re struggling with them too. My debilitating chronic health issues started back when I was only 22. So many of my days are spent locked inside because it hurts to even move. I don’t get a “normal” life either and it sucks. I feel for you.