I’m sat here in tears. She told me she googled fnd. And told me all I have to do is retrain my brain! My sleep is very broken. I’m early in bed. And early up! I wake up at least 8 times a night on a bad night it can be over 12 times. I’m also a sleep walker!
I have at least 30 symptoms. Some easier to deal with than others.
To be told it’s in my head. And all I need to do is change all my habits. Stay in bed when I wake up. LIKE ITS THAT EASY!!! This has been going on for years.
I don’t know what site she found that information on. But it’s poor. And it paints us in the wrong light!! I only got diagnosed last week! Still taking it all in. It’s hard!
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Chihuahua_crazy
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Hiya, Im so sorry you feel like this but I completely understand how you feel I was diagnosed a few weeks ago and some of my friends and family have said the same "its all in your head" and " well there's nothing actually wrong so it'll just go away". Are you getting any treatment or help at all?
People who aren't suffering don't understand at all, I love my husband but even he doesn't fully understand but people on here do, i've only been on a day or so and its been so helpful.
You could try and educate others but from my experience it just causes more stress for you which can make you feel worse. I find it frankly offensive the way some websites define FND some people still this its all stress related...… seriously!!! Its just wrong, keep your chin up hun and communicate with people on here. We all want to help each other. x
She is looking at outdated information. You could point her to this for a relatively sane explanation of what is a complicated situation. rarediseases.org/rare-disea...
Listen...... She is right from what she read it is all in our head. All the problems and solutions are really there. Ive been 14 years clean off drugs and crime. I left the life of being a negative person and now a successful married man whose an auto mechanic who also has FND. When we have problems like not being able to get out of bed, walk, talk, focus, able to have a meal normally, or just have a normal day as what we once had, we only see what we see and not what they see.
They see "its in our head" as we know whats wrong or that we have an underlying problem we are not willing to face. That COULD be true! But what they need to understand is that there are things we dont know such as conditioned responses and motor skills.
We have neurological problems based on our brain software. And our brains need reconditioning. But that doesn't mean they will by our conscious decision.
Here go to your mom and stick up your hand like you were asking for a high five, but say high five. Same with a hand shake. See what she does. Will she shake your hand or give a high five? If she does then you tell her that it is her brain doing something with out her knowledge. Same thing as tossing a ball to someone and not saying "catch".
Dont be mad her for not knowing why you have a problem or that shes not empathetic. Have pity on her being so naive. If you look at it as her being a child (because we all are in adult bodies) then it gets easier to see that its not her fault.
Just realize you are different than other with limitations like I have but she does too.
I am sorry you are feeling so hurt. The truth is, they don't know enough to know exactly what is happening. Retraining the brain is the thing at the moment, but I don't get how that explains relapses like I am having right now.
It is really tough trying to explain things, especially if you are feeling bad already. We are (understandably) sensitive to these remarks and it's difficult to shrug off.
I hope your aunt does more research on Google. I hope she sees how upset you feel. Maybe that would help her to understand a little more?
Reaching out is the best thing to do for yourself. Take good care right now.
My Aunty Google’s everything. But she doesn’t take anything in and thinks she’s knows better than me! She knows better than the drs. She stresses me out at times!
Yeah, my Dad knows best, and knows better than the docs. He went on a juicing rant (probably still on one). When he came to visit me for 6 weeks he told me how everything i had could be cured by juicing because this guy had a daughter who died of leukaemia?!?! And was therefore qualified to tell everyone juicing was the way. (He was selling seats to hear him talk - a bit like a cult experience in my opinion and selling books etc) I got real sh#*ty when he started to say my daughters type 1 diabetes could be cured through juicing. Wrong on sooo many levels. The biggest issue being that she no longer has any cells left to make any insulin whatsoever. Cure indeed! That's like saying I can cure your blindness, even though your eyeballs are missing. Just drink this juice.
My daughter was told, at 7 years old, that if she wore a crystal she would be cured. That was devastating at the time. We had to go through the whole grief process with her again.
I understand your frustration. Taking the bits that are easy to do and leaving the facts that are hard to live with.
I told my father at the time, the only person who can ever tell me about better treatment, supplements and possible cures, is my daughter's pediatric consultant. He has spent his life working with children and specialises in diabetes. He is up to the minute in research and constantly reviewing his working practices.
Perhaps there is something like that you can think of to tell your aunt. Basically, you will listen to the experts at the cutting edge of the trials and developing the most relevant treatments.
Of course, it was much easier to say about my daughter's specialist. He had a fantastic attitude to medicine, research and the nurses who supported him. He even said they were more specialised than he was and they were the ones who guided him with each patients needs.
But maybe you can think of a couple of sentences that will reflect the same attitude, where you want to follow the latest, evidence based, guidelines. Particularly mentioning Dr. Stone and his associates. They have plenty of research available online. And you could even quote some of it.
Sorry for the rant. As you can see, it really irritates me when people read some rubbish and recite it as fact. They do not know how to research and have no idea that they are missing the point. I have a nursing background, so I have a little bit of an idea of what to listen to.
Master of all. you can Google how to drive a car or build a house does not meen you can just go jump into a car and drive to the shops or grab your hammer and become bob the builder.
people just do not think and all so how old was the article she was reading was it from a credible source of information
when i first got told my mother and father in law were horrible to me in the end i cracked and told them to sod off a doctor used Google too tell me that i had to shut down and restart my brain and reboot my system he was not amused when i said where do i insert the usb flash drive.
We have to just try and think of what is helpful to us and what is not
try not to allow people to bring you down your not fake or putting it on and trust me everything you said i get thank god for netflix i can go to sleep then at 22.00 then by 00.00 in my mind is going crazy my legs are cramping abd having there own rave and the bottom of the bed and i take oramorph and loads of ever drugs which are ment to help u sleep but nothing but in the day i still can't switch off
Thank you for your messages. I was having a Crap day yesterday! I know my Aunty means well. It’s just the way she talks to me. Like I have no control over my own mind!!
Iv been watching walking dead. And fear the walking dead! When I finish them I have no idea what to watch!
When I wake up I dive out of bed like my arse is on fire!! I get my dogs up and come down stairs! It’s not until Iv sat down with my coffee that I think what happened?? Lol.
Today I have terrible pain in my lower back and hip! 🙁
Iv not taken him out in a few months. But I have someone who comes every day and takes him out. I plan on getting back out there. But my anxiety gets the better of me!
Oh, that sucks. Can you just do baby steps? Go out the gate and back a few times. Go 5 houses down and back for a week.
Even smaller steps than that. Putting shoes on and walking to the gate and back for a week. Or just putting shoes on and standing on door step for a week.
I can't always take my dog. She is very good about it. Some dogs go nuts if you don't occupy them with a walk or playtime. Mine likes to cuddle, follow me and doesn't fuss me. I am very lucky to have her.
I have 2 dogs. One an 8 year old King Charles. She is very lazy. But she has a similar complaint as me. So not sure how Much time I have with her. But Toby is my long haired chihuahua. He’s 3 and He has tons of energy. Toby is really sensitive to me and my changes in sugar levels. It’s amazing!
There is truth that your brain needs to be retrained and it is all in your head since the issue is functional in the brain. But the issue is retraining the brain. Many people need some treatment then they are fine but others will never be able to retrain. Look here for treatment options.
My Aunty not long got up. I go make her a coffee. I’m limping too. My Aunty asked what’s wrong. So I told her Iv hurt my knee and hip. Knowing this could be part of FND. She said “it’s old age” 🤬🤬😭
Aww bless. I still have a few years before my youngest moves out! But I also live with my mum. She’s talking about getting a move from a house to a bungalow. Stairs are hard work. My mum has copd. And is oxygen dependent now. Mum says her sister will have to move out if/when we move! I can understand the excitement! 😂😂
Keep holding that thought. I have been for about 4 years, and it is finally here! He is actually my oldest. My daughter moved into her dad's last year, to be nearer work.
I'm really sorry about that. The way my providers have explained it to me is that they definitely know something is wrong. But modern medicine just might not have a lot of options yet for treatment. Ok, I know it's not the answer I want to hear, but it's an honest answer.
Yes, you do need to retrain your brain. And yes, it is not that simple. I was diagnosed in early May, so I'm a bit more ahead of you on this journey. I work in IT. The way I see FND is that a software update was sent, and my brain missed it. So now I'm trying to work through by doing patch updates instead.
Initially, I couldn't walk at all. But I remembered how to march from high school. So I would march instead. Sometimes I could do a Zumba step instead as well. If my hands clam up, I start signing in ASL to unclamp them. It is brain retraining, and it's not easy. But it's not impossible.
I highly, highly recommend PT and OT if you are able to afford them. Although my therapists weren't necessarily well versed in FND, they were invested in my recovery. They wanted to see me get better and that made a huge difference. I was able to learn techniques that work for people with similar issues. Also, my therapists were the ones that figured out that optical inputs really overstimulated me. For me, that was a game changer. Now if things feel "too loud" I can close one eye, or put on sunglasses if I really need to push through something.
I remember how I felt after being only 1 week out diagnosed. I'll leave you with this quote from the last Harry Potter Book/Movie:
Harry Potter: "Professor, is this all real, or is it in my head?"
Professor: "Of course it is in your head, Harry. But does that make it any less real?"
Try this. Play along. She say its old age. say yup its old age I should just give up now, theres no reason to keep living anymore. Oh youre just being negative. yup youre right i am this world is so dark and gloomy I think from now on I need you for answers.
Hey can you google know it alls?
Hey I think I some people arent so smart if they have to google things, can you google googlers?
I like to google. Hey you know what we should both google maybe we can make a day out of it.
Your aunt knows what shes doing, you let her win by you reacting in ways youre used to. She plays you more than you know. Have fun and experiement with new reactions to hers
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