Get Inspired!

So this weekend has been hectic so far and will be all the way until Monday morning when it's time to go back to work, but I wanted to get at least one post in because I found inspiration in an unsuspecting place on Friday and can't stop thinking about it.  One of my co-workers who also has an auto-immune disease is doing something about it!  She is involved in an organization call ed Take Steps.  While promoting this event we got to chatting and I'm so glad we did!  As another sufferer of an auto-immune I understand how it is when people don't understand that you are sick because you don't have something like cancer or heart disease and they don't necessarily understand it.  People generally only care or ask or seek knowledge about what directly effects them.  This was a perfect conversation starter as I am the "new girl" there and don't know many of my co-workers.  We didn't have any in depth, eye-opening, philosophical type of conversation that would move Heaven and Earth but just getting to know a little bit about people in your work, community and neighborhood deeper than just your name, age and race is nice sometimes.  It's inspiring in a world where we are so attached to our electronic devices and just rush past each other in the grocery store.  It inspired me and took me back to a time when I was younger and people knew each other better and where more empathetic to each other rather than being so automated all of the time.  It gave me hope!

If you are interested in her cause the link can be found below and donations of any kind are always welcome year round!:

http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-NorthFlorida?px=2337255&pg=personal&fr_id=3852

If you have problems with the link or if expires for any reason please message me and let me know so I can get an updated one.

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!

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

Some privacy please

Well not sure about the whole Provigil thing.  I just don't know if it's helping.  I mean it might for an hour or two but when it wears off it takes every bit of energy I have with it.  I mean it sucks the life right out of me!  I just don't know if it's worth it!  I think I might rather drink 5 Zipp Fizz and get too much potassium and take my chances with the heart repercussions.

Yesterday I fell asleep in the bathroom stall and was jolted awake to the bathroom door being ripped open.  I gave myself whip lash as I flew into an upright position.  I honestly do not remember how it happened but there I was head between my legs like a drunk girl at a Frat party, out for the count, dreaming.  Cant't remember what the dream was now, guess I was so shocked and full of adrenaline from the "whoosh"of the door and the fresh air circulation that lifted my hair off the nape of my neck, but it's early afternoon and I feel myself headed in that same direction this afternoon.

This morning was harder than usual, it was cold and I was hurting so always makes it hard to get up!  Finally dragged myself up and out and on my way. I waited to take my meds figuring the later I took them the longer they would last and I really need them to work while I am working.  Well upon reflection, this may not have been the best idea.  I used to joke to people that I slept in the car on the way to and from work, and it's half true. I mean of course I am not snoring but you do get into a rhythm, and by rhythm one might say auto-behavior.  Well you can follow all of the other cars for quite some time pretty well if you pay attention every once in a while.  You can't tell me PWN are the only people who do this!! I am positive that others do it as well! Either that or there has to be a lot more undiagnosed cases than we could ever imagine, but I digress. While following along I guess I wasn't paying attention in just the right places and wound up taking the wrong exit!  This wasn't the first time.  I have lived in this town 6 years and it is quite spread out and easy for me to get lost in.  Luckily this time I realized it quickly enough and made the adjustments to make a U-turn and get back to the high-way and back on track.  I promptly cracked open a water, prepared a zipp fizz and took my meds.

By 11 am took the 2nd half of my pill and now it's almost 2 and it's COMPLETELY warn off!  I am afraid I am gonna fall asleep again today!  I don't know how I am going to make it through this week!  I am going to have to stay on this dose for a full month and it's going to be so hard! I think I was better off before the Provigil/Modafinil!

Can I do this?

So up until now I have kept a manual/written sort of journal.  Okay, it's only been a couple of months and I'll admit I don't do it everyday, but sometimes I do have more than one entry per day. Well going back reading that and even reading my first entry here I realized my thoughts don't relate to paper the way they quite do in my brain.  Maybe it's because I have so many and they overwhelm and flood my brain and trying to convey them is just impossible.  Maybe it's because I think NO ONE can possibly understand so what exactly is the point??? For whatever reason, at this time I feel that I MUST do this or attempt to or I will slip over the ledge and go completely insane.  At any rate I will try to keep pushing forward and continue to do so. I have decided the best way is just to keep doing both with hopes that somehow there will be some organization to all of it in the end.

I started my meds yesterday, generic form of Provigil, Modafinil it's called. It seems to be pretty uneventful so far.  I will have to admit I was terrified, thinking I would be all "cracked out" on it, but since the alternative was falling asleep at my desk I gave it a shot and much to my amazement I was a bit alert.  The problem was it was very short lived.  I wonder if everyone has this same issue or if maybe it will build up in my system and start working wonders.  We will see.  I am currently on day two and it was even shorter today but hoping that eventually it will build up and I will have better days.  Of course that is my life anyway, some good some not so good and some down right awful.  Well here's hoping tomorrow is GREAT!

Hello, my name is_______

Hello my name is ___________, and I'm a Narcoleptic.  Doesn't it just seem like I should be standing up in front of some 12-step program somewhere?  Not that I am making fun of those but just saying/typing those words feels as though it comes with some kind of label, stereotype and you can just imagine what the person hearing/reading them is envisioning.  Now I have never seen Deuce Bigelow, I will have to admit, but I keep hearing people relate to it and someone falling asleep in their soup.  I imagine it was probably quite hilarious. Having said that, when my PCP(primary care physician) alluded to me being narcoleptic due to my complaining of being exhausted at work and falling asleep in my car on the drive home, I thought surely at least one if not both of us was crazy!  I had heard of it, but like I imagine they portray it in the fore-mentioned movie, I only knew of the cartoon-like symptoms that the media, TV and well cartoons had provided me.  I never thought for a second this could be me! I mean I had a hard time staying awake but I am a mother of 3 and had started that at such a young age and had done it by myself for so long.  I did try to pursue higher education as I come from a long line of ambitious over-achievers but I could never make the classes because between work and taking care of kids I was just too tired.  Something had to give and well the kids weren't going anywhere and we all had to eat, so classes just were not high priority.  Looking back teachers would always say, and I hated hearing this, maybe because I knew it to be true maybe because I was just as rebellious as the next kid, "You have so much potential, but you are just lazy."  I guess why that stings so much now is that I am 41 years old, my youngest is 16 and I still struggle EVERYDAY, what if someone, somewhere took the time to say, "You have so much potential, but you are just TIRED or EXHAUSTED?"  Where would I be today?  Would it matter?  Does that make me bitter?

I am newly diagnosed, I am starting this blog to organize my thoughts as I have previously only done this on paper, for about 2 months now since I first started on this journey and was told I needed to work on my sleep habits.  I kind of got in the habit of journaling and thought that this would be the best way to document MY journey.  I have read some of the others, sometimes I nap at work during my lunch break but sometimes it's too hot.  I hope to meet more people like me since there doesn't seem to be ANY where I am and sometimes I feel like I am going insane and no one understands!

Looking forward to meeting YOU!

Sleepy Siren