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Let's get talking!

How much of your day do you spend thinking about the disorder you live with?

Somedays it's hard not to spend your whole day focused on the disorder. That's what I find anyway.

Today I had 5 #Seizures and the #fatique hit me really hard. So hard, I had to have my underwear cut off to use the toilet! And then almost fell of the toilet!

So today, I've spent alot of time thinking about #FunctionalNeurologicalDisorder
It's been hard not to.

But on good days, I try to focus my energy on something else. Like my family, friends, creative writing, drawing, raising awareness. Anything.

The disorder you live with doesn't own you. No matter how hard that is to believe at times. Your personality is who you are, spend your time being you.

I would love to hear your thoughts on this if you're comfortable enough to share.



How do one deal with not stop fatique. It’s getting worse and I find I am getting depressed about it. #fatique


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Good Morning #Giggles

Morning Mighty Family

I slept most of yesterday and I mean slept. I'm on new meds and I think they are making me very tired. Yawn.
As soon as I wake up I want a nap.
So yesterday I gave in to the tiredness and slept all day. Guess what I'm still blooming tired.
Time to speak to my Doctor I think. 😂😁🤔

I'm awake now but give me an hour and all I want is to go back to sleep. I suppose this is a good way to pass lockdown but ......how long will it last...

So from being an insomniac to being asleep all the time is very strange indeed. A very strange situation indeed. They are helping my cluster headaches a bit.

Mmm what to do?
😴😴😴 I'll catch you when I'm awake next. Yawn . I need match sticks to keep my eyes open
And something to stir my brain to make it work. 🤯
🤗😘🧡❤Tj love n hugs
#Yawn #tired #fatique #sleeping #RareDisease #ClusterHeadaches #Bekind #checkonyourneighbours #Love #Family


I was recently diagnosed with fibromyalgia. The fatigue is killer no me. I sleep all the time. Any suggestions #Fatiqueis4REAL #fatique

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Fatigued to The heavens and bad! ##fatique #CFS ##ohsotired !

Well I made it to my pain dr today so let’s see what he says. God only knows that I can’t keep going on what I’m on. He’s gotta change it up or add to it. Sumin I don’t care I’m so tired of being in pain and tired that I dread every day only bc of who I’m letting down bc of my sickness.
I sing for the Lord in a group and most days my faith is so tested and strung out that most times I just feel hopeless alone and lost in my own body!
I told my husband yesturday that I wished I could walk put into the woods and just disappear! Seriously! Am I alone in my feelings?