Two sides

I spent a little of my spare time at the weekend looking at the narcolepsy forums I've recently discovered and read one of the nicest posts I've ever came across.  It was written by someone who was in the early stages of a relationship with a narcoleptic.  He wanted to give his new partner support in the areas which would help her out the most and also to understand the condition more.  I commended his desire, offered what little bit of advice I could and ended with a statement which reminded me of the reasons I began this blog.

Sometimes the tiredness over rules EVERYTHING and a seemingly normal conversation can rapidly turn the narcoleptic into the world's most argumentative, angry person.

As a wife and human being, that is the side of narcolepsy I have had the greatest problem understanding.  It rarely escalates to that point and when it does it's generally because I'm beyond tired myself.  A throw away comment from either of us at moments like that can rapidly become a lit fuse.  The rational me is able to shrug off the barbed comments.  The tired me takes the bait.  The tired me wants to sleep.  The tired me resents that an argument has been started and the hubby can just fall asleep while the pointless, childish argument has robbed me of that opportunity.  That's when I HATE narcolepsy with a vengeance.

Last time was different though.  I'm far from a needy, whiny person but occassionally, just like everyone else, all I need is a pair of strong arms around me especially when I'm thrown into a gross situation.  With my extended family that seems to be just around the time when we have finally put the previous imposed drama behind us.  We argued, I felt crap, he fell asleep, I stayed awake worrying.  My eldest son was missing, considered to be a vulnerable person, a risk to himself.  I reminded myself that sleep is the Mistress above all, that after a nap he would remember that he loved me enough to see he had acted unreasonably.

After his nap I tried to explain how his narky narcoleptic side had made me feel, how I had to remind myself it was the narcolepsy and that I understood the narcolepsy made him behave in ways that the husband I loved never would.  His reply devastated me.  I didn't understand anything about this wretched disorder, that the narky narcoleptic and him were impossible to seperate into the two pigeon holes held within my mind.  I did what I do best and withdrew into myself, pulled my big girl pants on and worked through the whole missing son/pointless argument/hurtful statements on my own, in my own way, music and internet research.

Keeping my 'normal' narcoleptic husband seperate from the black narcoleptic was always my safety net.  His lack of empathy, along with his insistence that the two sides were inseperable, along with my own stress, anger and tiredness were all making me question my sanity.  I began searching for support groups created by people like me, then turned to narcolepsy forums, then to blogs written by narcoleptics.  I eventually stumbled across the Narcoleptic Wife's blog.  Finally, after 12 years, I was reading it from the other side, my side, the partners side.  This was the first entry I read.

I resisted voicing the big, fat HA! I felt as I read it.  But I suddenly realised I'm not alone.  I felt a new invigoration reading her blog entries.  I carried on reading and eventually came across these interviews from narcoleptics.  And suddenly, I saw things completely differently.  The last 30 months have been pretty hard on an emotional level.  Family stuff beyond our control but stuff that still had a huge impact on us both.  Sure I'd managed to deal with most of it myself but in doing so I'd lost sight of us as a couple.  Neglected one of the most important people in my life.

Through that blog and reading more and more posts written by narcoleptics I realised that it wasn't just me who had felt alone but the hubby has been too.  We were able to talk properly about it all for the first time in far too long.  I've never been able to tell him about the negative impact the "narcolepsy" has on my life before unless it's been shouted in anger.  I knew the negative impact it had on his life but I had forgotten how that impact affects him inside. I had been wanting to talk someone who truly understood how I felt for 12 years, he had lived with his diagnosis for 25 years and never talked to another narcoleptic.

I'm hoping that he'll read some of the forums/blogs written by other narcoleptics.  25 years is a very long time to never meet or talk to another narcoleptic and only another cataplectic can understand what an attack feels like.  Tomorrow we are meeting up with Lily for a get to know you chat before her hospital appointment.  Lily has endured years of no-one understanding that she's not lazy or idle.  Her overwhelming tiredness has left her too sleepy to even consider socialising just now.  The isolation and ignorance about the disorder makes me feel an immense frustration.  There are other spouses and sufferers out there who are still feeling that isolation.  I don't know where all this is heading but I do know that something in me has changed.  The N.H.S. broke my spirit 6 years ago over their repeated ignorance.  Life stuff kept that spirit broken.  Narcoleptic's Wife helped restore it.  Let's see if the N.H.S. is ready for the new and improved spirit.  I'm certainly ready for them.

Stepping into the unknown

Narcolepsy.  It's been a big part of my life for the last 12 years.  I don't have the illness, my husband of 7 years does and has had for the last 25 years.  In some ways I'm grateful that I've only known the narcoleptic husband because I know how much the illness has changed him even in the time that I've known him.

So, why a blog after all these years?  The answer is simple.  Some days/weeks are harder to get through than others and this week has been particularly difficult.  After yet another argument when the soul destroying demon narcolepsy overtook my husband's reasoning skills, I suddenly realised that there was no-one that I could really talk to.  No-one who understood what it was really like to live alongside "narcolepsy".  Sure, my husband knows what it's like for him but what about me?  The resentment and frustration that I occassionally feel.  The fact that I put his illness first all of the time and when I needed him to put me first, the seduction of sleep won every time.

Just as I was ready to scream the frustrations away I discovered a blog.  Not just any blog though.  A blog written by a narcoleptic's wife.   A wife who I could relate to completely.  Someone who not only expressed the same frustrations that I was feeling, but felt the same guilt at expressing them.  I drank in her posts about the mood swings, nodded my head at her post about feeling isolated and felt her pain when she blogged about the affects of living alongside narcolepsy when tiredness/sleep is the mistress above EVERYTHING.  Not only that but she had replies to her blog posts, replies from other narcaleptic spouses, all able to relate and reassure.

And suddenly I realised that I was not alone. 

I was also reminded about all the different ways that narcolepsy makes my husband feel, something that is ever present but something that I'd also became complacent about.  Sadly, there have been no updates from The Narcoleptics wife for over a year.  In one of my darkest moments, her blog shone out as a beacon of hope.  I hope that this blog can maybe help someone in the future, just like The Narcoleptic's Wife helped me.