Learn to rest

English isn't my first language. She/her/ -You never have to do today again-

[myjourneywithfnd]

About me:

I'm in my early twenties.

I got sick in early 2019 and got my suspected fnd (functional neurologic disorder) diagnoses in may 2025, after my symptomps have been worse.

I've started this (side)blog cause I noticed I need a place to vent and to hopefully meet people like me or who have similair symtomps.

So send me a message if you'd like to talk! :)

#my journey to find my regular experiences and the hospital stuff. #my (wheelchair) journey and #my (eating) journey for those specific stuff. Easier to find if maybe you are also struggling with that :)

About me: Last updated: 08/07/26

So maybe we can chat or if you're just curious :)

I love to read (Slowly been able to again the last 2 months)

I like horror/thriller movies, but also Romcoms because ✨️balance✨️

Favorite artists are Olivia Rodrigo, Sabrina Carpenter, Elvis and Harry Styles

- Going to try scrapbooking as a new hobby! Because I can do that in bed :)

NEW:

I have started treatment in february 2026! :) I'm on a waitinglist since june.... because the other thing didn't work

[myjourneywithfnd]

Sometimes I think about that scene from House in one of the last episodes; where he snaps about how he's always in pain after a collegue says he can't abandon his friend for not wanting to live because he doesn't want to be in pain.

I don't know why, but that really struck me. I'm not in pain every day, fortunately. I do experience discomfort and fatigue and stuff, it's different of course. But House was so valid for that reaction.

[myjourneywithfnd]

The referal place only has a waiting time of about 20 weeks (5 months) which isn't that bad.

I fully expected it to be a lot longer, it can be a little longer due to vacations but I still don't think it’s awful. So now I'll contact the hospital monday for a plan for in the mean time.

[myjourneywithfnd]

The referal place only has a waiting time of about 20 weeks (5 months) which isn't that bad.

I fully expected it to be a lot longer, it can be a little longer due to vacations but I still don't think it’s awful. So now I'll contact the hospital monday for a plan for in the mean time.

[myjourneywithfnd]

I needed this positive so bad!!! I'm so happy about it.

I'm officially back at 50 kg!! A healthy weight, I am really happy :)

[myjourneywithfnd]

Sometimes I really really wish I could just take a pill that would fix (some of) my symptomps.

[myjourneywithfnd]

I just gave my friend her graduation present, it made me so so happy to see her get so happy/excited from it. She such a sweetheart! (It were 2 books with some color matching tabs and corresponding bookmarks :). )

My mom helped me walk to get to her front door. I don't know why but my legs are really terrible today, they keep buckling.

[myjourneywithfnd]

I managed to read a little (so so happy and grateful about this new development).

And my door was open and my mom walked by and she told me she found it so nice to see me with a book.

I don't know that made me weirdly emotional, because I know my health stuff hurts my parents a lot too so for her to say that...I don't know.

[myjourneywithfnd]

So a little overview of the suggested things so far (getting back on my last post);

- Laying with your feet in the air against a wall for 10-15 minutes every day. Calms the nervous system. I did already do this when my legs were restless

- Massaging your feet with warm (unroasted) sesame oil

- Yoga Nidra (? I don't know)

- Certain herb mixes. Don't know which because this is not something I can try with my swallowing issues right now

I'll get back on this, but I thought I'd share just in case

[myjourneywithfnd]

So my mom talked to an acquaintance and my health came up (she was a little shocked). And she suggested some things that helped her when she had 'vague' symptoms.

It's more eastern medicine focused. I thought I'd share. I'm on a waiting list and so far none of the hospital things have worked (except the nutrition drinks), so I'm just open to try. Even if it helps just the tiniest bit.

[myjourneywithfnd]

It doesn't happen often that I'm alone at home for dinner, but my parents were still at a birthday party and I couldn't get a hold of them... (were they coming home, should I just eat something, etc)

I just wanted to burst into tears and then felt annoyed because of that feeling at the same time and I didn't understand why.

But I think I just realised even more that I depend so much on my parents for stuff. I can't cook a meal for myself. If I want to eat a warm meal.. I'm 'well' enough right now that I can heat something up if it's left in the fridge, but I can't make myself a warm meal and it just makes me so sad.

[myjourneywithfnd]

Yesterday I cleaned just the smallest thing in my room. Some pillows and clothes that laid on the ground.

I felt very satisfied after I did that (my room has been such a mess) but today I regret it so much. I feel terrible. So I'll not try that again any time soon.

[lupusbaby]

Hey, if you’re not as mentally quick as you used to be because of your illness- that’s okay. If you’re can’t think as fast or handle as many tasks that’s okay. You aren’t stupid, you aren’t unintelligent, and you aren’t less worthy of love or respect. It’s okay that your brain won’t or can’t go back to how it used to be. It’s different now, but it’s okay.

[myjourneywithfnd]

Well that was disappointing. I'm not that suprised though.

They did not contact the referal place about the waiting time. So now I have to call the place to ask, and then call the hospital back. And if it's longer then 6 weeks (which it probably is going to be) I have to make an appointment so we can then discuss a plan.

Why do they do that? I get a feeling they like 'wasting' your time... when you're chronically ill you just have to wait and wait and wait and be endlessly patient..

[myjourneywithfnd]

Tomorrow I'm getting a call from the hospital about the referal, the waiting time and a plan to cross said time.

I really enjoyed not having appointments this month. And with enjoyed I mean not having to drag my body anywhere and push through symptoms.

[myjourneywithfnd]

I think I'm starting to feel sick from this heat, despite that I've been in front of the fan the last few days. Just 2 more days and then it's getting a little cooler, a bit more bearable.

Are my fellow spoonies surviving the weather?

[myjourneywithfnd]

This heat is not okay...

Brain is so foggy, I feel like my brain has melted. My fatigue is heavy and the heat is triggering my legs weirdly enough. Heat helps but not this kind of heat. No logic whatsoever.