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.