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Living with Narcolepsy

Family and Friends


#1

It is the hottest day ever ...yet I could get myself to this point... and will drag my body through to the end of this very hot March day. My mind is filled with lots of thoughts, I will try to focus long enough to make sense in this paragraph.

I work for my brother in law and my mom lives with me at the moment, not because of me but because her husband died a few months ago. I can't remember when last I saw or spoke to a friend. I don't even think I know someone who will ask me... how I am...

Seems weird when I type it... yet it is true...

I stopped telling anybody how I feel or what I go through because they say I look good and healthy they can not believe I go through what I am telling them. If I dose off everybody around me will do anything to wake me up... if they see my eyes are drooping... they all shout... go to bed you are tired... sleeping on the couch is not sleeping...

The other side of it is... my mom says if she worked like I do she would also look and feel the way I do...

And here I am... on Ritalin 40mg LA am and before 13h00 20mg LA... and believe me I still battle. The neurologist told my family I have Narcolepsy...I have been tested..the meds work just not long enough...I have explained Narcolepsy over and over again...NO ONE hears me... they don't SEE me...

If there is anybody out there that can help me to understand or even to help me on how to detach from family neediness - Please type as much as you can...

I don't get lonely without people...I am a writer... silent focus is the best gift I can have in any day...

But - I don't feel I should support my family and friends...I take responsibility for my space... surely they must do the same..or am I selfish?


#2

Janria,

It is not selfish to take responsibility for yourself and expect others to do the same, but it doesn't appear to me to be the norm these days and society in general has become much more egocentric.

Please find someone with whom you can discuss this safely. This site may work for that purpose but if it doesn't, please find a counselor. I pay someone to hear me even though my husband is very supportive. And I expect my counselor to not only hear me, but to also be supportive of my emotional well-being and to tell me the truth.

And shouting is not acceptable behavior on anyone's part unless hair is on fire, or some other harmful calamity is about to happen. Waking you up to go to bed is not one of those things.

I have found that expressing my needs very plainly, almost at a third grade level of understanding, calmly and yet strongly (it helps delivery if you can think lovingly about the person(s) as you are doing so) sometimes works. However, I do my best to keep in mind that the only one I can even hope to control is myself, so once my needs have been expressed, I must let go whatever it is that they choose to do with that information.

I've had family, friends and even medical providers make ignorant remarks. They'll continue to do so, if they choose to. I can't make them change.

I lost most of my friends during all of this, and I'm open to reconnecting with them; but I only have so much energy because I am very careful with where that energy is expended. Why waste it with those who don't hear or care?

To summarize, find someone who does hear you, even if you need to pay them, don't allow unacceptable behavior in your own home; make your needs clearly known but realize that you can only control your own reactions, not anyone else's; and please know that we hear you and you are not alone.

Kathy


#3

Wow..I have no words just a sigh of relief... thank you kwoman...in the kindest way possible I verbalised today...I will not take stronger or more meds because it makes others feel better to see me work harder or longer hours or even seeing me awake for longer ...i will find someone ...thank you very much for your insight when I lost focus of the bigger picture...;-)


#4

I just found out that apparently my neuro is now not able to confirm my diagnoses…and that another specialist will be sending me for my 4th sleep study…I want to run…and my sister is the one who had discussions…do some of you also feel an intense need to be able to just make your own decisions. …anyway everyone means well. …


#5

You have narcolepsy, a sleep a neurological diagnosis. Then you've got "tired", regular. There's an allowance many of us have to make for the medication helping us to stay alert, a balancing act that requires energy to manage. That's enough, plus whatever work you like to do. Your mom needs help by a coach to find a place of her own and to help her work with depression or whatever grieving she's experiencing. Can you enlist the help of family here? You're a compassionate person. It's okay to have limits.


#6

Very well said. Experienced everything said here. No one gets it unless they have it!