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Living with Narcolepsy

R U STILL in bed?! lazybones


#1

Love the judgement from loved ones. I think I prefer, "How are you today?" LOL

How does one deal with criticisms? I fear telling people because they don't understand, & yet I feel I need to justify my actions/behaviours when typically I'd like to be left to my own devices. It's a catch 22.

Generally, I live in quiet denial of my sleep disorder hoping not to be found out. However, accusations of not pulling my weight or doing enough lead me to excuse myself with a REALLY good REASON...n'est -ce pas

How do you deal with other's negative assessments?


#2

It’s very hard and I haven’t got used to dealing with it yet. I am a volunteer mod and don’t have narco but for four years have had another condition which has me up in the night for hours. It’s a neurological condition which makes my extremities red and burning but I get told that I should employ ‘mind over matter’ and anyway they too have hot feet and they don’t refuse to go out in the evening. If I was younger they would be telling me to pull myself together but instead have implied that my nocturnal wanderings to cool my feet and my need to sleep in the mornings imply either early dementia or perhaps a mini stroke. I never get the impression that more than a couple of them have looked up the condition and really tried to understand it and that includes members of the medical profession.
At first I attempted to fit in with people’s expectations and suffered for it. Now I just say ‘Sorry, wish I could but no can do’ and try not to care what they think.


#3

Yep, I’m still in bed! I did a charity walk on the weekend (overnight) and finally feel perky today (Wed). I learned on the walk of yet another group that works together for support, to change society, to fund research. Without understanding a disorder or illness, friends and family can do us harm without knowing. Sometimes destructive words are said to stop the conversation. Let it stop. Asking for help from family means having to listen to their situations too, because, like us, they always pretend everything is okay. Great news is that some relationships survive this test. This discussion topic brings much to mind. I would like to hear from others.


#4

NO. That's a novel idea! Perhaps I should try it ;)


#5

Oh my, this is my biggest problem. The biggest fights my dad and I have are over him not understanding my disorders. He says, "Oh your tired? Maybe you should not stay up so late!" I am not up late because I choose to be, I just can't sleep at night. Even if I do, I am still tired. Then I go out, I sprain, dislocate, subluxate, etc a joint or something and I am irresponsible for being out with my friend when I know I am sick. My doctor told me to continue going out and leading a normal life. LEARN ABOUT MY DISEASE GOSH DARN IT

Sorry that was not directed at anyone. Just frustration. Oh and the worst. My friends have now coined me the nick name "Porcelain Doll/"


#6

I really appreciate and respect friends and family who support and understand. It’s important to connect with those sorts as so many are judgemental and not helpful.