Good points to having FND?

[DNE92]

Hi Peeps

Well as my day began as usual around 3am with nausea and I haven’t had a good night’s sleep like now it feels forever I thought could I think of anything positive about having FND. NO 😢

Why do doctors etc think chronic sleep deprivation is just “oh well”? Oh well what?

Hmm I’m still in bed - waiting for the miracle of some kind of sleep 🤞

What’s the definition of madness: doing the same thing over and over again but expecting a different result. Oh dear now I’m mad as well 🤪

Happy hunting for something positive- we should run a bookies on it 🐴

Cheers

Lou

[andyglasgow2016]

sorry To hear you’re sleep problems. I wake up everyday around 3/4 despite having 30mg amitriptyline (hate spelling that word!)

For the good things of Fnd I have come up with a few so I hope others will agree or even add to them!

1) easy to spell

2) the car parking with blue badge is sweet

3) a free carer to the cinema

4) you can get drunk quicker with your meds

5) if you get asked out but you really don’t want to go- blame it on the Fnd

Feel free to add 😉

Andy (Scotland)

[DNE92 in reply to andyglasgow2016]

Didn’t know about the cinema one. Thanks. They said NO to my Blue Badge application so I am going to get a horse and park it where I sodding like. Ah thought of another one very appropriate for me - swearing like a trooper. You know FND - it makes you jumble up your words 😂. Thanks for your list - made me laugh which is excellent considering my early morning trips to the kitchen today included cleaning up dog poo 😱. Cheers Lou

[andyglasgow2016 in reply to DNE92]

Yeah the cinema card is a CEA card ... costs £6/£8 and just hand it over and they issue it without embarrassing you. Just keep applying for the badge or get your Physio to refer you- the more evidence you have the better.

Yeah Fnd and words are great

[DNE92]

Thanks, that’s incredibly insightful. Yes I think perhaps that I am still in denial of having FND - somewhere deep down - and so keep pushing harder and harder to find the old me. Maybe I need to say “ she is gone forever, stop searching”. That will take time and courage. Cheers Lou

[pickleweed]

I take over-the-counter Benadryl/diphenhydramine when I feel that I need to fall asleep. Crying helps me get tired to fall asleep.

[cshubert]

Beautifully said!

I have 3 children (currently ages 12,10, and 8) with special needs (Autism, Sensory Processing Disorder, severe and mild ADHD, anxiety disorder, and one with visual tracking difficulties). I've always said as a parent of children with special needs, you really value and appreciate the little accomplishments your children make! My children are all high functioning with a minimum of an above average IQ all the way up to a genius level IQ. Yet growing up, we celebrated even little things like my son being able to initiate a conversation on his own. Having children with special needs made me much more sympathetic and empathetic to both children and their parents. The same thing applies to me with my disorders!

I have have found that living a life filled with chronic pain and (at best) a host of very annoying symptoms (at worst, disabilitating symptoms) has made me both more empathetic to others who suffer as well as much more appreciative of the good things in my life. I recently took my family on a hike to see a local waterfall. I had to use my cane to assist me, and it took a long time to get there, but once we reached the top, I felt such joy and pride in myself for the journey and such wonder at the beauty of the falls. It made me sad to see how many people who walked up, snapped their selfies, and walked back down the trail. They truly did not take in the beauty and serenity that nature has to offer. How could they? They were still being pulled by the need to play the games society as set forth for us.

I find myself on a much more concentrated journey towards peace and inner stillness. When life forceably removes your distractions, it really does allow you to see what bullshit the "rat race" is and just how much joy and beauty other people are missing out on.

I'll freely admit that not every day is like this. Today being a prime example. I had a very bad night, due to extra back pain, and woke up feeling very unrested and angry. "Why me? I'm only 38! It's not fair that I feel 80!". So I decided instead of starting my day as usual, to soak in a hot bath (water is very cleansing for the soul!) and plan to do some Tia Chi with my kids this morning before we start school. Some days, it's harder than others to remember the positive. But like my therapist said, even if there is only ONE positive thing that day, no matter how small, you hold tight to that one thing with all your might!

I, too, have found great solice in increasing my artistic output! I am naturally artistically inclined in many areas, but have never spent much time developing those skills outside of my music. So I have begun to paint more, draw more, design more, write more...and it gives me a great boost of self confidence and contentment when I do. It allows for the expression of who I am and what I go through in a way that others may be able to understand.

FND, and the mirriad of other afflictions we as a group suffer with, is not a gift. BUT. The insight we CAN receive if we choose to, CAN be a gift! When I think of how many people I have been able to help in the last 8 years specifically because of my illnesses, it makes me proud! Time is going to pass anyway...and with it, your life. The question that remains is what will you do with the time you have left? How will you choose to live the life you have been dealt? Will anger, resentment, and malice in your heart take you to where you need to be? Can you change what IS? To quote my therapist one last time...you cannot control what someone else does in their own boat. Nor can you control the winds and the waves around your own boat. All you can do is control what is in your own boat and in which direction you steer your boat. Let go of the need to control the boats and waves around you and instead, focus on steering your boat to calmer, stiller waters!

Hugs to you all from The States...

-Christy-