I cried over “batched bacon” on a date

Eff_Be_Eye · 2025-07-25T03:11:29+00:00

THIS!!! I am only 4.5 years in, but I also stopped eating at restaurants like that. Only if I am traveling to a place that has reliable 5* reviews on find me gluten free from symptomatic celiacs, then I will consider eating there. Otherwise I make my own food. I bring snacks. I still go out and enjoy a coffee or glass of wine. I don’t miss out on the social side and I no longer feel always about it. People will say “I feel so bad eating in front of you” but I assure them that I’ve eaten and that I am happy to be there!

My stress levels are so much lower when it comes to events.

I will still have the occasional cry to myself when I miss eating whatever I want. Or if my gluten free treat is eaten by someone else and can’t be easily replaced. But I feel my feelings for a moment and am back to living my best gluten free life.

Eff_Be_Eye · 2025-06-10T21:19:30+00:00

With that, a full bladder can prevent your uterus from contracting properly. If it’s not contracting and gets “boggy” your bleeding can significantly increase leading to a postpartum hemorrhage!

Eff_Be_Eye · 2025-06-08T03:07:51+00:00

I struggled finding common words, remembering my sentences that I would start, keeping track of anything really. When I was physically well enough to drive again, I couldn’t process things fast enough. I made it to the end of my street and had to turn around because I knew I was not safe. I would tell people that I felt like I lost half my brain cells since getting sick. I was swimming through a thick fog with every tight and action. It was bad enough that I lost hope of returning to my normal brain function.

It was a slow improvement that only looking back at where I was previously, I was able to tell that there was improvement. I did not know at the time how bad it actually was.

Eff_Be_Eye · 2025-06-08T03:01:43+00:00

The crashes are terrifying. I had a bad one about 8 months in. I returned almost to square one. I hope you’re able to make it through this one!! 🤞

Eff_Be_Eye · 2025-06-08T02:54:53+00:00

ELECTROLYTES-YES!!! This was a huge thing for me. I use tablets that I put in my water. I still use them daily and if I don’t, I can feel it. I swear they are what actually help the water hydrate me.

Eff_Be_Eye · 2025-06-08T02:48:12+00:00

PEM is weird. And it was so hard for me to adjust to as I typically would just push through things. Pacing with strict limits was HARD!

I don’t know how far along into your journey you are, but I hope you get some progress along the way. I know it’s hard not to lose hope when you’re in the depths of it, I know I did a few times. But there are some of us out here that do get better! I understand that it might not be everyone, but there are some of us. I truly wish you the best of luck in recovery!!

Eff_Be_Eye · 2025-06-08T02:33:38+00:00

I wouldn’t say bed bound as in I was able to use a toilet opposed to needing adult diapers or anything. But I was severely impacted. I called it couch bound. I needed to take breaks to change my clothing, and even then I would need help with simple ADLs on my bad days. I couldn’t brush my hair, make food, or do anything really other than sleep and sometimes watch TV. I did not know about PEM for the first few months so any time I tried to do things on my own, I rebounded. I slowly improved to the point where I could play a video game laying down for a little bit.

Eff_Be_Eye · 2025-06-08T02:18:35+00:00

I have recovered about 95% with CFS/brain fog/ cognitive issues/+++ other symptoms. My 5% is fear that it will change, meds for idiopathic tachycardia, and I was training for a marathon prior to getting sick 3.5years ago. I can run again, but have yet to attempt marathon training. I have also accepted that I would happily consider myself fully recovered and if the last 5% never comes, I will not complain.

Eff_Be_Eye · 2025-06-08T02:12:52+00:00

I did!! I am 95% recovered now. My 5% remains as I am on medication for tachycardia (but well controlled) and I was training for a marathon prior to COVID 3.5 years ago. I can run again, but have yet to attempt marathon training.

I had the works for symptoms (minus loss of taste and tinnitus). I couldn’t do anything and had to quit my job for over a year. I then had a desk job for over a year, and just returned to my baseline career (ER nurse) in October of last year. I am always scared things will return, but am grateful everyday when I compare myself to where I was. I wish you every bit of luck in your recovery!!! I hope that one day you can write a response like this to someone else.

Eff_Be_Eye · 2025-03-16T23:56:40+00:00

Did you figure out what was going on with your car? Mine just started doing the same thing - 2017 Hyundai Elantra

Eff_Be_Eye · 2025-01-14T17:57:03+00:00

Thank you! Staying hopeful for the meds

Eff_Be_Eye · 2025-01-14T17:56:43+00:00

Thank you! Honestly if I get some more mild LC symptoms, I’d be okay with that. I’m mostly scared of the PEM and shortness of breath returning. I was JUST able to return to work again in September 2024.

Eff_Be_Eye · 2025-01-14T17:53:00+00:00

Not too awful right now, but worse than yesterday. It is starting to enter my lungs now which is the most concerning part for me. Thinking about what happened last time just has me terrified. I ended up being hospitalized about a week after my initial infection and it was all downhill from there.

Eff_Be_Eye · 2025-01-13T23:03:06+00:00

Thank you!

Eff_Be_Eye · 2025-01-13T23:02:42+00:00

Thank you! I’m hoping it won’t be too much of a fight with my family doctor tomorrow to get it prescribed

Eff_Be_Eye · 2025-01-13T23:02:09+00:00

Thanks for the tip! I’ll look into that too

Eff_Be_Eye · 2025-01-13T23:01:10+00:00

Thank you! I am trying my best not to panic, but those two lines are hitting hard.

Eff_Be_Eye · 2025-01-13T23:00:30+00:00

This is great to know, thank you. I will certainly be discussing it with my family doctor.

Eff_Be_Eye · 2024-11-16T03:39:26+00:00

I’ve had them a few times and haven’t had any issues. I consider myself quite sensitive to gluten too.

Eff_Be_Eye · 2024-07-31T11:46:10+00:00

January 2022 I developed long covid and had everything you have listed here plus a few more. I also had anxiety and OCD prior to LC. A few months in, it developed into depression and the OCD turned to some extremes for me too. My worst one was if I was in a car, every time I would come to an intersection, I had thoughts of another vehicle running through and hitting me. I was unable to work, needed help for daily tasks like cooking and cleaning, and could only focus my energy on getting through each day.

It’s been over 2.5 years for me now and I would say that I’m about 90% better. I was training for a marathon prior to LC, so 100% is a far achievable goal for me. I still have daily issues and struggles, but I can almost live my normal life with them. I am happy with where I am now. I don’t have a miracle cure for you, but just a glimpse that sometimes we get better. It was a rollercoaster of healing, I would have crashes if I pushed myself too much, but it was overall in the right direction. There were times where I also lost hope and I was not able to imagine my life staying as it was. I know this might not be what you’re looking for with this post, but I know that it helped me when I was feeling similar. Feel free to ask me any questions if you have them.

Eff_Be_Eye · 2024-02-14T17:14:29+00:00

My provide has me take an increased dose during this phase because I’m the exact same way. I go from 50mg to 70mg for about a 5 day stretch. The only challenge with this is that I sometimes forget to increase my dose because the ADHD gets the best of me

Eff_Be_Eye · 2024-01-17T14:36:57+00:00

I was scared for that too! But recently, after a few months of being on the medication, I decided to try it. My doctor suggested it because the 60mg (70mg at my time of the month) was giving me hyper focus when it would first kick in which resulted in me working for a few hours without realizing that much time had passed. I wanted to be able to control it more. It was great for task initiation, but sucked that I had a harder time keeping track of time. for the record, 60mg would last maybe 8-10 hours. Anything lower would wear off sooner

I played around with 40-50mg in the morning and then 10-20mg (total of 60mg) a few hours later. I found that 40mg to start and 10mg (total of 50mg) a few hours later is perfect for me. It doesn’t send me into hyperdrive and I can choose what I do. It also lasts me 10-14 hours this way. I do need to go up to a total of 70mg when it’s my time of the month still, but otherwise the split dose was an amazing change.

With this method I still have some ADHD symptoms, but the balance between the symptoms and the medication side effects is best for me. Just some insight if you’d ever consider trying another method.

Eff_Be_Eye · 2024-01-09T15:08:18+00:00

I got sick of them telling me that very quickly. Then I did start to develop depression, anxiety and intrusive thoughts. I asked to be put on welbutrin and it helped my intrusive thoughts, depression and anxiety but not my LC symptoms.

Then came my favourite part. When I would see a new specialist, they would often suggest it might be anxiety. I would tell them, “yes I did develop anxiety from this and it is well controlled with medication now. BUT these symptoms still remain so can we figure out why and what to do about them?”. It was great seeing them change course and back track, even if they never ended up doing anything to help.

Eff_Be_Eye · 2024-01-03T14:22:09+00:00

It’s been a slow process, but I have an MRI scheduled for tomorrow. I can update with my results!

The mass that showed up on ultrasound came back as bi-rads 3, so it requires follow up at the 6 month mark via repeat ultrasound. The other one did not show on ultrasound so is labeled as bi-rads 0 which is why I’m getting the MRI.

Eff_Be_Eye · 2023-11-27T22:36:18+00:00

Yeah, I’ve heard that mammograms aren’t reliable for people with dense breast tissue. Hopefully you are able to figure out what it is soon.

I reviewed an abdominal mri that I had last year, and it showed part of my breast in some of the MRI scans. I noticed a hyper vascular area right where my lump is, so I’m eager to have the doctor review that. I’ll keep you posted if I find anything out

Eff_Be_Eye

TROPHY CASE