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.

Beware the balance

So yesterday I went for my follow up to see how the meds were helping and make adjustments as needed.  When I started out on the Provigil I was very nervous that I would get that jacked up, cracked out feeling and luckily I did not, in the beginning.  I say in the beginning because a week and a half into the treatment I came down with an awful stomach virus.  I had been reading Narcolepsy forums and other sites and had read that some other PWN(people with Narcolepsy) would take what is called a "drug holiday" in other words they would not take the stimulants on the weekends.  You see we need these in order to help function at work and make it through the week but on the weekend it is easier to stay at home and listen to your body and take naps.  I must admit I still don't know how exactly Provigil works, but from what I understand the medical profession really doesn't either.  So I have this stomach virus, I'm on a drug holiday, I wind up having to miss one day of work due to the illness but decide it is Monday and need to continue on with my normal routine and start taking the Provigil again.  This is the first time I take it and go back to sleep and sleep for a couple of hours, but I wake up and all is good, or so I think.  Later that night I start to develop mild anxiety.  Now I am no stranger to anxiety, it has visited me a bit in the past but being a fairly intelligent person I can usually distinguish that I am in fact having anxiety and not say a heart attack or some other emergency. (of course after the first few times of swearing you are dying and then coming out the other side and realizing you didn't, it's scary to think I might one day actually be and brush it off due to the amount of anxiety I have lived through, but again that is something that deserves another day and it's own whole topic) Well unfortunately the anxiety begins to become more frequent to the point it becomes a daily thing with the Provigil.  This mostly hitting me at the most inopportune time, like right as I am driving home from work.  Wednesday I am at a marketing meet and greet through the local Chamber of Commerce and I go to the ladies room to blow my nose and realize my nose is bleeding, which of course triggers a anxiety attack because here I am at a social event with 90 strangers that I am committed to staying at for the next hour and a half and my nose has just randomly started bleeding.  Luckily I make it through get back to my office and call the doc.  He then tells me the nose bleed is most likely caused by allergies and it is quite normal at this time of year and can be cured with a simple saline solution.  This has a huge calming effect and we agree that I will keep my Friday appointment.  So yesterday we decided, increase in the Provigil to keep me from falling asleep in the bathroom and car on the way home. Oh yeah, forgot to mention still doing that, possibly the reason for anxiety. He also gave me a mild anxiety pill to use in a pinch.  We don't want to use it if unnecessary since it will make me tired.  Luckily even after I got back to work and it was so hectic yesterday no anxiety so that was a good thing, but the downside, it drained all of my energy so as soon as I made it home, and let me tell you it was a struggle, I fell asleep 3 times at the same light due to the time it took to make it through the light and people were honking and cussing, but as soon as I made it home I laid on the couch and was right out for 3 hours.  Woke up to poke around on the computer for about and hour or so and then right back to bed.  This had me up and down all night in excruciating pain from the Fibromyalgia. You see the more sedentary you are the more stiff you will become and the pain increases, but the Narcolepsy makes you want to sleep. Here I am this morning stiff, sore, joints and muscles burning and still a   bit tired.  So for everyone there is a balance to be found, a balance in the meds for me and a balance between the syndrome and disorder that plague my life daily.

Something I can relate to

I was trying to explain to my fiance what it is like to be me and how I feel and I don't think he ever really got it.  One day I was trying to figure out if the pain from my fibro was really related to or should I say caused by the Narcolepsy and I came across this article that almost perfectly describes me and just like the writer states in the article every narcoleptic has their own experience and own set of symptoms.  Every narcoleptic experiences these symptoms at different levels.  Some of us have some of the same symptoms but experience more of some and less of others, but one thing is for sure it is really hard to explain to a non-narcoleptic what it's like and apparently it's hard for them to understand.  If you are a non-narcoleptic and you are interested in a great explanation check out this article.  If you are a narcoleptic and would like to direct a non-narcoleptic to a great explanation send them this link or if you would just like to read it so you can have something to relate to I would suggest taking the time to have a good read.  You'll be glad you did!  I was.

http://voices.yahoo.com/narcolepsy-narcoleptics-explanation-disorder-3708382.html?cat=70


Oh, and as far as the pain, who knows which came first, guess it's like the chicken and the egg.  Do I have pain because I don't get the proper restorative sleep my body needs or do I not get sleep because my body is in constant pain?  That is probably a question for a philosopher or a medical professional, neither of which my muddled brain will ever be able to train to be, but that is probably a subject for another day.

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