u/Embarrassed-Bug-2430

Hi,

I don’t really know where to put this, I just feel like I need to share it somewhere with people who might understand.

Last year I suddenly got very sick and couldn’t breathe properly. I ended up in intensive care and spent a long time there. Later I was diagnosed with diaphragm paralysis caused by nerve damage (Parsonage-Turner syndrome).

Now I’m living with a ventilator. I use a Löwenstein Vent 50 (non-invasive), and I can only be without it for a short time, so I carry it with me in a bag everywhere, even when I work.

I’m a carpenter and I’m still trying to work, but it’s really hard like this.

Around 4 months after I got sick, my twin daughters were born. They turned 1 this February. That part is honestly the hardest mentally — I can’t be the father I used to be.

The first months were really tough, I lost a lot physically, and even now simple things are not easy. I’m trying to rebuild myself step by step, but some days are heavy.

I don’t really expect anything, I just wanted to share this. If anyone has experience with diaphragm paralysis or long-term ventilator use, I’d really appreciate hearing from you.

If anyone wants to know more, there are more details on my profile.

Thanks for reading.

I don’t really know how to process what happened to me, so I just need to get this off my chest.

Last year I suddenly got very sick and couldn’t breathe properly. I ended up in intensive care and had to fight for my life. I was on ECMO and spent a long time sedated.

When I finally woke up, everything had changed. I had lost a lot of muscle, I was extremely weak, and even breathing felt like hard work. Later they found out I have bilateral diaphragm paralysis, which explains why I couldn’t breathe normally.

Now I’m living with serious limitations. Even simple daily things are difficult, and I can’t be the active father I used to be for my two young children. That’s honestly the hardest part for me.

I’m trying to stay strong and rebuild myself step by step, but mentally it’s very heavy sometimes. I just needed to say this somewhere.

Thanks for reading.

Hi everyone,
I’m a father of two and I’m trying to rebuild my life after a severe illness. I now live with 72% disability and everyday tasks are much harder than before.

I’m looking for practical advice:
– how to manage daily routines with limited physical capacity
– ways to stay mentally strong during recovery
– any resources or communities that helped you in a similar situation

I’m doing my best to move forward and take care of my family. Any advice or shared experience would mean a lot.

Thank you for reading.