NARCOLEPSY…

Why haven’t I written?  Just found out another piece of the puzzle of issues.

I am so tired, no really, I am so tired, but I can’t stop.  It doesn’t matter, but if I don’t give in to the naps, will I make it worse eventually?  No clue.  

It’s not a surprise, it’s not a big deal even, I mean it is, but it’s not (doesn’t make sense, never claimed I made sense).  It’s just “another thing to add to my list of crap” and on to the list of meds I take.  I don’t need a medical alert bracelet – I need a med alert tatoo arm sleeve! (at least then I’d have room for additional or inevitable changes) Or better yet… my own Squire! Yes, thats what I want (not really) my own Squire (in green tights) with a scroll, so I don’t have to carry all this with me.  I just have to pick the Squire up before appointments, and can wear a medical alert bracelet with the Squires name and number (incase of an accident).  Ta Da!!!

Pathetic. Yeah, I know, but as I said I’m tired, need to stay awake and needed to say out loud that I am a Narcoleptic along with other things.  I’m NOT lazy!!  I’m NOT making everything up!!  It has a name, not my name, but the disorder!!  I have it (the disorder), but I am not the disorder, no more than I am any of the other disorders I have (I hate the word disorder, but disease is worse).  I do NOT have these things by CHOICE!!  

Am I angry?  Yes.  I’m tired! I’m tired of everything around me, from the doctors calous way of telling me to the years prior feeling like i was going crazy and still not knowing anything more than – Hey no cure, this med works for you? ok, keep taking it for now. If I had no insurance I wouldn’t know any of this, I’m actually “old” to be diagnosed with this.

Every “disorder” within a family unit affects the WHOLE family unit whether they have the disorder or not.  So, the more the family has illness-wise the more the family needs to pull together to give each other support. Or it can rip the whole apart.  Friends are affected by it, social lives, everything we do as individuals – affects the whole.  You really don’t know what you have until you are in this kind of position.  

If I didn’t have my faith, I couldn’t stay as calm and passive about everything on a daily basis.  There are many websites to search and for those that have several different disorders together, support groups, and writing – hoping that there are those whether they read or not, there might be someone that understands.  If you are a care giver as well as patient, your on double duty.   

I hope there are others out there reading this, understanding.  I hope there are others out there reading this, finding solace that they aren’t alone. (and yes, i’ve dozed a few times in writing this)

May you find peace within yourself, balance within yourself, and lifes journey worth the effort everyday.

Jane

 

 

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About janedoe68

I am anyone, everyone, and no one. I have lived many lives, under many different names. I could be your best friend, your sister, a neighbor, your boss, your daughter, your mother, an enemy, a confidant, even your grandmother. Yes, I have lived and I have been all of these things at one point in time to someone. I am a multi-faceted woman. I write anonymously, to be heard not for who I am, but for what I have to say.
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