Appreciating those special people

It occurred to me recently how very fortunate I am.  I have three beautiful children, just added a beautiful granddaughter and the most amazing man I think I could have possibly ever met.  I don't know what I must have done in a previous life to deserve such great fortune but perhaps I don't let them know quite as often as I should how absolutely amazing each one is and how truly blessed I am for them all.

My fiance is a true super hero but maybe one that is conflicted and doesn't know yet that he has these super powers.  The man works very hard, averaging 6 days a week, comes home and continues to work hard.  Unfortunately for him, not long after we met, I started to become not so well.  I always had little pangs here and there but the pangs turned into pain, and developed into chronic pain.  He complains sometimes that I am always sick, but other than all his complaining you would never know living with and being with someone like me who is chronically unwell was anything but exactly where he wanted to be.  I can't imagine Royalty could be lavished with more love, attention and affection from their subjects.  He daunts on me.  He is my morning alarm clock, my medicine dispensary, my personal chef, personal trainer, butler, chauffeur and of course amazing lover! All that and he's super sexy!  If I'm having a bad day just knowing that he's there to protect and love me is all I will ever need.  I believe I would never be able to face all that I have gone through and all these illnesses have done to me if it weren't for him.

Do you have someone who you truly love and depend on?  Someone who you may not feel you can express your appreciation for them enough?  Tell me your love story and how that person has affected your life.

Not so unbelievable

I would love to say it's hard to believe that I haven't posted in over a year but it's really not that surprising to me.  It's probably not too surprising to anyone who really knows me either.  What might be surprising is that even though I don't log in here to post I have notes, spirals, a memo app on my phone and countless other places that I keep notes and collect info for no purpose or end game other than chronicling those little things that remind me that something is not quote right or that my body is off at the moment.  The thing about it is, my symptoms sometimes subside, leave altogether or take a long sabbatical leaving me to forget what it was that was concerning me in the first place.  The problem for those around me is that they witness and hear about those times that I know and feel something is off since I have a tendency to not only write it down but also voice it whether to myself or whomever is sharing oxygen with me at the time.  What this interprets to for those people around me is constant whining, whimpering and complaining.  It seems as though the doctors have labeled me as depressed and having anxiety.  I may have to agree with anxiety but I will have to respectfully disagree with any reference to depression.  I know that many will say that chronic illness and depression go hand and hand and I suppose it makes sense but for me I just cannot accept it to be.  Yes I would absolutely love to stop being in pain, yes I would love to have answers and be "fixed" but to try to label me with some general anxiety or depression term in order to explain away any symptoms I have I will not accept that.  To say someone is depressed because they would like to get back their quality of life is no more accurate than the days of old of blaming everything on dehydration and hormones.  Our bodies are complex and just like any machine can have multiple systems that are affected by something quite simple.  Why does the health industry look for a long difficult explanation and when incapable of narrowing down to one item blaming general things like anxiety and depression?  Hopefully I can keep coming here to keep a diary of these feeling, my symptoms, test results, diagnosis and other silly things I find out along the way, and hopefully one day this will help someone else who might feel lost identify with another lost, but not depressed soul :)

Please don't call me lazy

All of my life I have been told that I have so much potential but I am just lazy or I don't apply myself.  Well maybe that is true, maybe I am lazy.  Think for a moment if you were sleep deprived and if it were a chore for you to make it through the day, to struggle to stay awake through an eight hour work day not to mention the hour commute there and then hour commute home, collapse for a 30 minute nap and then wake for a few hours of you time just to go to bed with many different episodes of waking in the middle of the night, never getting that deep sleep that your body much needs to re-charge.  Now imagine going through this for 41 years, 3 children, 2 divorces and countless other life changing events.  I know, lot's of people go through all sorts of things every day and that is what I told myself for years, the difference is that I don't ever get to regenerate.  I am a Narcoleptic and my body doesn't allow me to.  So if I seem to be lazy it's not intentional, it's sheer and simple exhaustion.  Imagine your most exhausted state, do you want to get up and do those things that really need to be done? Can you always do them?  Sometimes your body just doesn't allow it.  So please the next time you feel the need to judge someone, take some time and ask them if maybe they need some help or if there is something else going on.  Maybe they're not lazy, maybe they just need a moment, maybe they need just a 25 minute nap to re-charge.  That might be the best they can ever hope for in this life, because that might be all that they can get!

Do you see me?

Prose for the compassionate judgmental types:

When you look at me what do you see?  Do you see a bitch?  Do you see a faker?  A complainer?  A whiner?  An attention seeker?  Someone making something out of nothing?  Do you know what it is to be me?  How scared I am?  How alone?  What I feel?  How I hurt?  How exhausted I am EVERY FUCKING DAY with no explanation, no relief?  Do you think I WANT to feel this way?  I WANT TO BE NORMAL!  I want to be perfect!  I want to be like YOU!  You, who sits in your ivory tower watching, judging and whispering about how fucked up I am.  Can't I join you?  Won't you let me join YOUR club and quit this one?

dedicated to all the people who have "invisible" illnesses