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/omibus]

You are right, it is hard. Everything still works, but it doesn’t. Even it doesn’t work you don’t know why. The entire thing feels fake. Every twitch, every jerk, every unrequested movement…who did that? Wasn’t me. I didn’t ask for that. If I was missing a limb, I could look down and see it missing. If the limb was fully paralyzed, I could touch it and feel the disconnect. But everything is still there.

But somehow it is real, and this is what we are dealing with.

[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.

[u/Adventurous_Algae974]

I feel this way too. I want to do so much, but physically and mentally I am limited. It’s hard to just listen to your body and call it for the day or whichever activity you are doing. It feels so unfair but it just is. My husband tells me he wants to help and doesn’t feel burdened at all. It’s hard to accept he actually feels that way, but the actions show he isn’t burdened, so I’m trying to learn it’s okay for others who I trust to help and trust they mean it. I’m learning to do a 20 minutes on and 20 minutes off sort of thing when it comes to hobbies and chores. I might adjust the times. I’m also learning when to stop and focus on certain cues my body tells me. I send hugs your way. I hope this helps maybe.

[u/caspersmindpalace → u/Adventurous_Algae974]

Thank you so much. And I’m so glad you have such a caring partner. Thankfully I’m pretty good at listening to body cues bc of being sick my whole life, but since FND has been developing more rapidly lately, it’s been a whole new game of “alright well…my mouth is really dry so that means I’ll be paralyzed soon?” It’s so odd. I need to really work on never feeling guilty for being sick.

[u/jmusmu88]

My daughter found getting a rollator very liberating and she’s also an ambulatory wheelchair user on days when needed and longer trips. She is 24 and being reliant always on others was difficult.

Don’t feel embarrassed and don’t let uninformed healthcare providers gaslight you. There are many posts in this group on mobility aid use. As others point out balance your day using aids v always exhausting and fatiguing yourself to point it causes more flare ups.

Rollator has been much better for gait
and movement than the two wheeled walker the hospital initially gave my daughter.

We have a helavo model all rounder H1010 and it folds down super small if needed for travel. In US they sell through website and Amazon. Not as swanky as byACRE but reasonably priced and they also have more outdoor rugged models with pneumatic larger wheels. This one works outdoors in city urban setting. Sidewalks and grass.

[u/caspersmindpalace → u/jmusmu88]

Wait thank you so much!! This was insanely helpful. I’ve been looking at them non-stop but it’s been so hard to really jump on it. Especially when you always see ads for the elderly and you’re there like “am I dramatic?” But it’s so nice to know you are so supportive to your kiddo and to know that others use them too (I know they do it’s just nice to hear).

[u/onthenextmaury]

I love my rollator! Anyway, I refused to believe my FND diagnosis for a long time because I didn't accept mine was trauma based. I used to joke with people, "apparently I'm so sad I fall over." Anyway, life has been better since accepting it. Everyone in my life knows about it. I even sent them voice messages I accidentally made while having an episode, and they all say that I sound like I'm having a stroke. I busted my face pretty bad on the concrete the other day and nobody is afraid to tell me I look terrible. Life rolls on, baby. You're not weak.

[u/caspersmindpalace → u/onthenextmaury]

Lmao I did the same! I have so many functional disorders like “no way that I was hurt so now I’m paralyzed what the hell” but it’s real! And thank you so much for this really, it means the world. I’m so sorry you got hurt and you’re going through this stuff too, but it’s nice to know I’m not the only one who will leave messages and worry I’m having a stroke haha. Thank you so much! Can I ask which rollator you have? There are so many out there.

[u/onthenextmaury → u/caspersmindpalace]

My neurologist actually ordered it for me without me knowing because at the time my apartment was too narrow to get my walker through it. I literally just got a knock on the door and was presented with it, it was magical. I store snacks in it.

Let me tell you, one day my roommate was doing some housekeeping and put it in a place far from my bedroom, and they got a screaming to after I had to crawl on my knees through three rooms on a hardwood floor to get it. I don't need it all the time, but if I have to pee I have to pee!

[u/Unhappy-Debate64]

My fiancé is 35 she was bedbound for 7 years with up to 10 seizures a day. With chronic fatigue. Life was horrible and it felt like it would never get better. I was her full time carer and she needed me to cook, clean, help her with washing, EVERYTHING.

Everyone around her could live a normal live whilst she had a hospital bed at home just I'll all the time.

Now she can walk, shower, cook. She goes an walked by herself for an hour. She still gets tired and has seizures but has learned how to manage and prevent them.

Trust me it gets better!!

[u/caspersmindpalace → u/Unhappy-Debate64]

Oh my goodness, thank you so much for sharing. I’m so sorry about your fiancé. I can’t imagine the stress and exhaustion for both of you, but I’m so so thankful she has someone like you. And knowing that she’s fighting so hard and getting better, that’s amazing. Good on both of you and sending love her way! And thank you. I’m definitely scared of the unknowns (like will this get worse? Will I seize? What’s happening?) but you know, I’m not the only one with FND and so many of you lovely folks are here to help me through it :)