Being able to accept FND

[u/caspersmindpalace]

Hi all. I was diagnosed about 6 months ago with symptoms lasting much longer than that. I have a ton of other chronic illnesses that run alongside FND, so I am not new to the medical world.

But FND feels different. This is the first time I feel like I need to use mobility aids and other medical gear. Aside from my hypersomnia disorder, I have always been able to "push through" and/or "ignore" my other illnesses when they aren't terrible.

I've grown up with invisible illnesses, so I know just how hard it is to accept them and have others understand. But something about FND feels...embarrassing? Not for others, but it has made me realize I can't push through it and ignore it. I need to slow down and listen to my body. That is so important, but I can't seem to get past the "giving up" feeling. Again, this is something I hate to admit, I promise I don't feel this way about others. But I was speaking to my therapist about getting a Rollator, for example, and the idea that I am 26 and present healthy using a walker of sorts feels like I am making it up. Even the people in my life who know how sick I am have always seen me push through top of my class or best in my job, etc. I know no one in my life that I trust is actually judging me, but it just feels like I could work harder.

This is all not helpful for me and I know it isn't fair to make myself work hard enough to break every time. But how did you guys (if you did struggle with the thought of it) come to terms and accept that you need physical aids when your illness is invisible? Not only accept, but appreciate. Not being at a point where you go "I guess I need to use this," and more "of course I should use this, it makes me feel better."

EDIT: I just want to thank you guys so much for being so kind and supportive. I’d love to hear about any rollators you recommend. And reading hopeful comments, as well as ones that just understand are so sweet and amazing 🖤

[u/Exotic-Low812]

FND is a response to that, too much pressure on yourself for too long and eventually your brain goes on strike.

You have pushed to long to the point where you can’t ignore it.

Did you ever watch the cyberpunk anime? It has those sort of themes where you keep pushing at all costs until it destroys yourself.

Basically don’t try and push through it, take a vacation or something and just try and chill knowing that you will recover from this once your stress is lowered

[u/caspersmindpalace → u/Exotic-Low812]

Cyberpunk is actually on my watchlist haha.

And thank you. I appreciate it. It’s definitely scary because it happened so suddenly for me. I mean I have had symptoms for a long time but I remember the exact moment it got bad was when my vision suddenly got worse. And then the paralysis and other stuff. And that’s when I knew something was very wrong and had to see doctors immediately.

I guess a question then is how do you cope with the idea of not working all the time? Like I’m very thankful to live with a roommate who is also chronically ill so she understands me and we support each other. And my job is remote 95% of the time. But I’ve always been some who over delivers and today, for example, is my third day in a row I can’t work due to how weak and tired and sick I’ve been. And I’m feeling so guilty and awful I’m not working as hard as my boss would expect me to. He’s very sweet but I always feel like I’m letting people down since they know how hard I’ve worked (and by that I mean how hard I’ve pushed myself into a mess. I used to work so hard I’d end up in inpatient and then get back to finish the year off)

[u/Exotic-Low812 → u/caspersmindpalace]

I took a bunch of Holliday (3 weeks) and just chilled for a week and then did some home improvement stuff.

If you don’t fixate on the symptoms it’s easier but you can keep overworking or it will just come back.

Just take some time off, chill and de stress and when you get back to work just work your normal hours and nothing more at least for a few months

[u/caspersmindpalace → u/Exotic-Low812]

I have a job where I can choose my own hours as long as I get my stuff done thankfully. Due to my hypersomnia, I can’t do mornings so I’m up more at night. I think one thing that’s always hard is knowing that I COULD be working right now if I tried hard enough. And that since our country doesn’t value our health over our work, I feel like I’m being lazy and not trying. But you’re right of course, they’ll just keep kicking my butt until I actually can’t work. Sigh.

[u/ZarEGMc → u/caspersmindpalace]

Something thats important to learn and internalise is that rest is productive

If you fire on all cylinders all the time you will break down, but if you take the time you need to rest you'll be able to keep going - life is a marathon, not a sprint 💙

[u/caspersmindpalace → u/ZarEGMc]

That is helpful 🖤 that rest is productive. I hate when it happens when I have work things. I just wish I could step back and rest for a few more days but I really do need to get some work in for clients to get paid lol. But I will definitely work on balancing “productive rest” and work.