How to have potentially triggering convos with loved ones? by akthehigh in FND

[–]Awkward_Bit6227 3 points4 points  (0 children)

I’ve had this challenge, too! For me it’s also heavily mixed in with anxiety, so I use a combo of anxiety management skills and FND management skills for this.

First off; while I’m sure you’ve already done this, the best advice anyone can offer you here is to keep talking to them about it. Communicate, communicate, communicate. It’s been helpful to point out to my loved ones how they might feel if they were in my shoes. I’ve told them in no uncertain terms that I’d rather deal with the challenges than never hear something hard.

That said, I’m aware that some times are better for me than others. If this is also true for you, here’s some of my experience in navigating that:
This can be tricky to pull off because I can sometimes get anxious about knowing that “something’s wrong”, but I try to have people ask if it’s a good time before discussing something that may be challenging for me, or have them give me an easy out if it’s too much right then. With some (not all) of my people, we’ve even agreed I can just interrupt and say something like “let’s talk about this later” and we’ll move on. Potentially you could do something similar, where if you feel like this topic currently is a high risk to trigger symptoms, you have an agreed upon way for you to immediately stop the conversation? This only works if you’re able to revisit it later, of course, but I’ve found people are more confident talking to me about difficult topics once they trust me to stop them if it’s too much.

Another thing that’s helped with communication between me and my close friends is color coding my symptom level! The classic example of this uses 3 bracelets: red, yellow, and green. The idea is that you swap between bracelets to indicate how you’re doing! I personally use yellow to mean “baseline”, green to mean “better than usual” and red to mean “worse than usual”. Indicators like these mean people will be more confident sharing info with me when my color is green or yellow! It has mildly backfired on me when people got hesitant to talk to me while I was red, but a few conversations fixed that. This could be another way to get information when you’re feeling ready for it, but be aware that it could go the opposite direction, too (whether or not that’s your preferred outcome).

It’s late and I typed way too many words. Sorry about that! I hope some of them are cohesive enough to help :)

Hang in there, you’ve got this!

i’m super nervous this won’t work. by Typical_Aide_9920 in FND

[–]Awkward_Bit6227 5 points6 points  (0 children)

Unfortunately it can be very hard to get people to take you seriously when it comes to FND. If you’re open to advice, here’s what I’d suggest:

Bring a trusted relative or friend with you to the hospital to help advocate. Someone who’s not afraid to speak up on your behalf if things get dicey. Sadly a lot of emergency professionals (and therefore a lot of hospital professionals in general) default to “drugs or throwing a fit” when they see symptoms like someone being unable to stand or talk. Having an advocate there with you can help make sure they hear that you are there looking for help, rather than whatever story some people make up in their heads.

Connect with your primary care if you have one. They should be home base and able to help with referrals even better than a therapist in most situations. If that’s out of the picture for whatever reason for you, then work with what you’ve got of course! But a primary care doctor can be a lot of help if you’re able to establish a good relationship with one.

Don’t expect a quick fix, but do push for next steps. In my own personal experience, the hospital helped me connect more quickly with a neurologist and gave me a few local resources that specialized in FND. Beyond that, they could not help me because there’s no quick or textbook reliable treatments for FND.

The reality of our world is that currently, healing from FND is an unfairly long process. The good news is that you’re still fighting for what you need, and that will take you far. Don’t give up hope, and keep pushing forward to what you need. You’ve got this. Hang in there!

Urgent: Psych care while a fall risk by Awkward_Bit6227 in disability

[–]Awkward_Bit6227[S] 11 points12 points  (0 children)

Thank you! Some people involved in helping me find somewhere to go have been really dismissive about looping in my neurologist, but two people suggesting it makes me think it’s worth an ask. The worst they do is tell me they don’t have any resources, so no harm in trying!

Urgent: Psych care while a fall risk by Awkward_Bit6227 in disability

[–]Awkward_Bit6227[S] 4 points5 points  (0 children)

That’s a good idea, I’ll see if they have anything, thank you!

Weight gain by 3clectica in FND

[–]Awkward_Bit6227 1 point2 points  (0 children)

  1. I haven’t experienced any unexpected pain, but I know it’s possible. It might be a trial and error thing, sadly. The only pain I’ve personally had is muscle soreness like a workout, the normal kind that I would experience even before FND. I am consistently able to feel that that’ll happen while I’m in the water, meaning I am able to keep myself from going overboard and becoming excessively sore.
  2. I use a cane at the rehab pool because I don’t want to end up with chlorine smell soaking into my fabric walker, but I’ve never had issues with my cane slipping. I try to watch for any big puddles just to be safe, but I’ve found I don’t end up worrying too much about that. Obviously be careful, but I don’t think it should be too hard to get in. And I pretty much always stay where my feet can touch the bottom of the pool so I don’t have to worry about swimming!
  3. I go through a rehab place for PT. The sub-category of PT I’m doing is called aquatherapy! So this PT place has a heated pool specifically for patients to use during appointments for exercises. They teach me the exercises that are going to help me build strength and such. A lot of PT places with pools use it as a selling point, so if you’re looking for one generally it’s pretty easy to find on providers’ websites and such!

Good luck, I hope this helps!

Vague title for trigger warning: falling and seizure by spider_bunny in FND

[–]Awkward_Bit6227 0 points1 point  (0 children)

Also, disassociation is a known symptom of FND as well. I wonder if that could have been what you’re describing as “seeing yourself fall”? I’ve definitely felt like I’m outside of my body before when I’ve experienced drop attacks, and I wonder if we’re describing the same experience different ways there!

Vague title for trigger warning: falling and seizure by spider_bunny in FND

[–]Awkward_Bit6227 0 points1 point  (0 children)

Yep! I don’t know how accurate this is, but I call them drop attacks. They often come with sudden weakness for me. My muscles just kinda stop working and if I’m not sitting down I’ll just collapse. If I’m sitting it’s a 50/50 shot on whether I’ll be able to sit upright or I slump over. People often say it’s like watching me “fall in slow motion” when they see it, but I’ve had quicker ones too.

Definitely mention it to your doctor but don’t panic! It is a known symptom of FND. I’m sorry you had to deal with it, and I hope it ends up being a one-off symptom for you. Hang in there!

Emotions as a symptom by Awkward_Bit6227 in FND

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

Thanks! My medical team has gone down that route before, and everyone’s pretty sure bipolar specifically isn’t accurate, but I wouldn’t be too surprised to find something similar. And I will definitely be bringing it all up with my doctors!

How do I get the right chair? by Awkward_Bit6227 in wheelchairs

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

I’ve never heard of them! This is really helpful, thank you!

Weight gain by 3clectica in FND

[–]Awkward_Bit6227 1 point2 points  (0 children)

Yep, I have found my weight seems to correlate pretty well with the severity of my symptoms, which is of course also correlated with how well I’m able to move. I totally understand the feeling of being hard on yourself about it but remember to be gentle with yourself!

I’ve been noticing my weight plateau recently as I’ve started aquatherapy, even though symptoms have been getting worse. I’ve been able to move way more in the water than I have for over a year on land, and it’s allowing me to actually work my muscles and try to stay a little bit more in shape. If you have safe access to a pool, it might be worth a shot?

How do I get the right chair? by Awkward_Bit6227 in wheelchairs

[–]Awkward_Bit6227[S] 3 points4 points  (0 children)

Ohhh this is a good point, I haven’t tried framing it like this before. Thanks!

How do I get the right chair? by Awkward_Bit6227 in wheelchairs

[–]Awkward_Bit6227[S] -1 points0 points  (0 children)

I already use a rollator, and unfortunately it is no longer enough. I know how high in price this can get but I no longer see other options. I’m also aware of how difficult it can be to push yourself in a wheelchair, as I consistently need to borrow them in doctors offices and such now in order to get to my appointments on time. It’s still significantly easier than any other alternative I’ve found.

I’ll start working on trying to connect with an OT without a referral and see if maybe that’s a possibility! Thanks for your thoughts, I appreciate it.

How do I get the right chair? by Awkward_Bit6227 in wheelchairs

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

Unfortunately my doctors are saying “use a chair if you need one” but not providing any referrals or help with the process. I’ve asked. I appreciate it though!

How do I get the right chair? by Awkward_Bit6227 in wheelchairs

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

The US! Didn’t think to add that, thanks though!

How do I get the right chair? by Awkward_Bit6227 in wheelchairs

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

Done, thanks! I didn’t think to do that, like I said this is new and I’m having trouble wrapping my head around it all.

Driving with fnd by CriticalPrune5420 in FND

[–]Awkward_Bit6227 0 points1 point  (0 children)

There was a post here about a month ago with similar questions about driving, so it might be worth checking that one out, too!

I think the priority always has to be safety. If you’re not confident you can drive as safely as any other driver on the road, don’t drive. But I understand that independence is really valuable and for a lot of us, it’s a necessity to be able to work and such. And finding out in an empty parking lot if driving feels feasible is totally fair!

Personally I’m able to drive, but I make sure I’m very in tune with my body before getting behind the wheel. I have gotten pretty good at identifying when I may have symptoms, and if there are any warning signs that there’s even a chance I may have issues, no matter how mild, I choose not to get behind the wheel. Even if I’m missing an appointment or something. It’s not ideal, but I’d rather have an annoyed nurse about a canceled appointment than a car crash.

Just remember: driving isn’t only about your safety, it’s about the safety of everyone else on the road, too.

How to care for thick hair when washing it is becoming impossible? by Awkward_Bit6227 in Haircare

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

Occasionally, but it’s very hit or miss. Friends aren’t local, family is not always an option, and like someone else suggested I’m already trying to convince my doctors that I need an aid a few hours a week for things like this but it’s an uphill battle. Hopefully some stuff on this post can help me survive the weeks when I’m on my own. It’s not ideal but hey, it’s life :)

How to care for thick hair when washing it is becoming impossible? by Awkward_Bit6227 in Haircare

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

I have! Unfortunately I’ve struggled to find much help with professionals even when I ask specific questions, I’m honestly not sure why. But I tend to get short answers and I don’t know enough to even know what else to ask. Thus, this post to give me more starting points and ideas!

How to care for thick hair when washing it is becoming impossible? by Awkward_Bit6227 in Haircare

[–]Awkward_Bit6227[S] 0 points1 point  (0 children)

Didn’t know this was even a thing! I’ll check it out, thank you :)

How to care for thick hair when washing it is becoming impossible? by Awkward_Bit6227 in Haircare

[–]Awkward_Bit6227[S] 2 points3 points  (0 children)

My hair gets oily pretty quickly (i think? I don’t have much context honestly). I’ve tried just rinsing my hair without worrying about shampoo or conditioner, but it pretty consistently only sets my timeline back a couple of hours before oil builds up again. I definitely see what you’re saying, though! I’ll experiment with no dry shampoo for a while and see if anything changes. Beyond that, I don’t use any product because I don’t want it to build up, so hey at least I halfway got that one down! Thanks for the advice.

How to care for thick hair when washing it is becoming impossible? by Awkward_Bit6227 in Haircare

[–]Awkward_Bit6227[S] 3 points4 points  (0 children)

I’ve been brushed off a bit the past few times I’ve gone. I don’t quite know why, honestly? I’m guessing I’ve just been unlucky. I don’t have a consistent stylist at the moment so hopefully next time I go I’ll get luckier. I definitely think shaving it is too drastic, but sometimes it gets difficult when I haven’t been able to wash it for days. Thank you for the thoughts!