Sleepytime Blues

Part of the charm of Fibromyalgia is the sleep cycle disruptions.  Before I had any aches and pains I had the sleep issues.  I want to sleep all of the time but I can never sleep at night like a normal person.  I've been keeping vampire hours on and off for years.  When I was employed it was a pain in the ass; falling asleep at 6 am only to have to wake up at 7 or 8 and then being expected to be productive the rest of the day.  I was almost always running on fumes.  One would think taking a job at night would help.  Nope.  I've done that, too, I would fall asleep at 11 am or noon and have to be at work by 1:30 pm and would be equally as sleepy just in reverse. 

Good times.

In an effort to get my sleep back on normal "working" hours I attempt to reset and I stay up for 24 full, aggravating, mood swingy, Google all the things, hours.  It's as awful as it sounds.  It's actually worse than it sounds.  If you ever need any indication that you've aged in the 10 years between 20-30, try to stay awake for 24 hours.  This task was easier when I was in my early 20's.  Maybe because I was out doing hoodrat things with my friends until stupid o'clock any given morning.  It was nothing for me to say "Oh I haven't slept in a day and a half, I'm resetting." whilst sipping on the semi-permanent grande white chocolate mocha frap that was plastered to my hand.  I once pushed too far and stayed up for three days which ended in a crying spell in front of a guy that I kinda had a crush on.  I don't even know why I was crying.  It's like my brain was like "No!  No more, go to sleep right now!". 

I've tried falling asleep whenever I fall asleep and setting an alarm to wake up at a normal time.  The snooze button struggle is so real, kids.  10 or more snooze button pushes and 3:00 pm later I'm right back where I started.  I have even woken up enough to turn the alarm completely off, like cancelling the entire alarm on my phone and gone back to sleep.  The 24 hour reset is the only way that works and here lately that's only been a temporary fix.  One random night of up way too late and I'm right back where I started.  A lot of it has to do with the fact that I have no routine anymore.  I don't have anything to get out of bed before noon for.  So who cares if I'm up until 8:30 in the morning?  Not like I have a job or anything to get up for in the morning. So I get caught in this cycle. 

I'm in the middle of a cycle right now. I'm going to stay up until late tomorrow in hopes of resetting again.  I know it's probably not the best way to do this but it works.  Even if it's for a short time.  I think this go around I'm going to make a better effort to set a routine.  Even it's just getting up a normal time everyday to exercise or go for a walk.  I also will be starting school (for real.  I mean it) in January to take advantage of all my not working and to regain some semblance of a social life and routine.  Then I'll have a reason to pull myself out of bed before 4 in the afternoon and fall asleep before 8:30 in the morning. 

I've just downed my first big cup of iced coffee and I have 3 or 4 more seasons of Grey's Anatomy before I'm caught up for the new season.  It's gonna be rough around here for the next day.  I'll be live tweeting it as I did before.  I'll probably crave pancakes or chicken at 3 in the morning.  I think was french toast the last time.  There will be a lot more coffee and bouncing around to avoid napping during random times of the day.  It's going to be great. 

Yay Fibromyalgia!

....but not really.

Tummy Troubles

It's back.

Way back what seems like forever ago I started having these mystery stomach pains.  Upper right side under my ribcage.  It makes me nauseous.  Food makes it worse.  I'm not really here for it.   The only upside is I typically stop eating and I lose a bunch of weight.  Yay for that.   Just in time for bikini season.

What's frustrating is that I've been tested up the wazoo (literally, sorry for the TMI) for everything and with the exception of a small hernia my digestive tract is super normal.  I've been to the ER more times than I'm willing to admit.  Every time I think "Okay this is the time they are going to find something" and every time my gall bladder has no visible stones and I get the "go see your GP and do tons more tests.  Tests I've already done and that quite frankly I don't have the insurance to repeat.

I know I'm tired of it.  It comes and goes in varying degrees of pain.  This particular bout is a bad one.  I can deal with the Fibro pain.  That's familiar. I can still eat and it doesn't feel like the room is spinning and I'm going to vomit every single minute. I'm sitting here now taking small bites of plain pasta because I know I'm SUPPOSED to eat.  I don't want to get to the end of the day and realize I caused more harm than good by not putting anything on my stomach.

*sighs*

Is there a real life Dr. House?  I could use his help right about now.

When it Rains

This week has been kind of bananas.  I know...it's only Wednesday.  It started with my mom being rushed to the ER from work.  She'd had a very severe asthma attack.  She's doing well now just trying to get adjusted to new meds and actually resting.  I guess I'm like her in that regard.  We don't know how to sit still.  Even when we are sitting still there are 100 other things you are thinking about doing.  I won't even get into how her manager was a jerk when she met us in the hospital.

I'm still trying to adjust to my fibro meds again.  I remember why I stopped taking them.  My mouth is horribly dry and I sleep all day.  There is no getting your circadians right when you don't really fall asleep until 5am and you don't wake up until well afternoon.  Even more strange my right leg is killing me for some reason I have yet to figure out.  Fibromyalgia...*rolls eyes*.

One of my grandmother's best friends passed away today so she's really sad.  We are a barrel of fun over here this week.  I'm really not here for this week being a total loss.  Especially after Sunday was so awesome.  So I'm claiming a much better rest of my week.  Wish me luck!

Fibromyalgia Awareness Day

Today is Fibromyalgia Awareness Day.

*whispers*  I didn't know we had a day or a month or walks or anything.

One of my friends told me once years ago that there was a display in one of the bookstores marking the month and I forgot.  Fibrofog I guess.  I'm shocked and then not shocked at the same time that there are enough people with fibromyalgia now that we get a day.  I knew I wasn't the only one suffering but we seemed so few and far between.  Back when I was diagnosed it was all fibromywhat every time I mentioned it.  Nowadays everyone knows someone with fibro.  It's like being a member of an elite club that no one really wants to be a part of.  Trust me if I could get out tomorrow I would.

I'm not going to tell my story again.  It's been told you can read it here.  I'm going to try to get out today and enjoy it.  I'll be girl with the big hair in something purple.  I hope you pull out your purple and do the same.

Keep fighting the fight, ya'll!

The Walking Dead

Super not good fibro day.  Not pain.  Pain I can deal with.  Today is the worst fatigue ever.  It hit me all of a sudden and now I'm dragging around like a zombie.  I'm going to have to go back on my meds and that makes me sad.

Chile...bye.

I have a family problem.  More specifically I have a problem with family.  I think I was born into the wrong one, like most of the time.  They don't like me and for the most part I don't care for most of them.  I've tried..kinda.  They have tried less.  Take for instance this exchange with my the other person in my house who is not my mom (hereafter referred to as TOPIMHWINMM).

Mom to  TOPIMHWINMM :  What are you eating?

TOPIMHWINMM (in their short smartassy kinda way):  Soup.  What else is there here to eat but soup?!

*Note: I cooked I ginormous pot of soup last night for dinner.  I'm having a flare up now and I didn't feel like cooking.  Not to mention that there are also leftover hamburgers in the fridge from Saturday that no one at but me since everyone else went to dinner.  On top of that there is and entire freezer full of uncooked food that anyone can come into the kitchen to cook.

Me (now pissed):  There is plenty of food here if cook it.

TOPIMHWINMM (condescending):  Oh I thought you were the cook and your mom and I were the housekeepers.

Yeah I did think to myself  "did they just say..."

Me:  I'm not a cook.  And there is a freezer full of food.

TOPIMHWINMM:  No you're the cook and we clean...

Me: and you can also cook.  So if there is something that you want cook it.  Nobody here is anybodies anything.  Don't try to come for me.  (Yeah I said don't come for me to TOPIMHWINMM )

It was like a Real Housewives of Just About Anywhere reunion.  My mom, who I expected to say that I was wrong, audibly said "Oop!" as to say yeah...she tried it.

These exchanges with some member of my family and myself happen quarterly.  I know you probably would think that I'm the problem.  I probably am.  My defense is and will always be:  Don't raise a child to not take crap from anyone if you don't want an adult that won't take crap from anyone.  All of these people had a hand in raising me and now act surprised when their wigs get snatched.

I need a job.  I need to move out.  Yesterday.

Flared up

I've never really written much about my fibromyalgia.  Mostly because I hate typing the word because that red squiggly line shows up under it telling it's not a word.  Of course I've had more than my fair share of tweets and facebook statuses about bad fibro days, fibro fog and sleeping until 2 pm.  Really writing about it, though?  Never happened.  I think the real reason is because I've read a lot of other people write about it and it's basically the same.  There is the "woe is me" story or the "I'm not my fibromyalgia" story of triumph and I fall somewhere in the grey area in between.  It really depends on the day.  When I woke up this morning, something said you need to write about it.  Probably because today isn't a great day and after a string of really good days it's really easy to forget when you absolutely don't want to move.  So in the interest of actually listening to the little voice in my head when it tells me to write, here goes.

I was 16 when I first noticed the strange pain in my right foot.  I had chalked it up to working as a cashier and being on my feet all day.  I don't know why but I brought it to my mother's attention.  She's not the type to panic, this time she did.  I went to the first doctor and explained the pain, he casually brushed it off as pain related to my being on my feet, told me I needed to exercise and sent us on our way.  Little did I know this would become a recurring theme in my journey.  A year later when that pain became numbness and that numbness turned to tremors in my hands it was time to see another doctor.  After what seemed like a million tests, x-rays, CAT scans and MRIs we had absolutely no answer what so ever.  I knew a lot of things that I didn't have though.  That was fun.  Having someone tell you "well we know you hurt and we know that you're tired and your hands shake and you have all this stuff that is no denying that but we don't know what it is".  I sort of shut down.  I had decided that maybe it was all in my head.  There is no way that all these things could be happening and medical professionals had no idea what it was.  That's impossible.  I had family say that I was acting out for attention and that my mom should stop feeding into my delusions.  That was the roughest part for me.  Not having a diagnosis I could deal with eventually but the fact that no one really thought I was sick was hard.  I retreated further.  I learned to put on a brave face and simply say that I'm "fine" whenever anyone would ask.  Even if they asked specifically how everything was going with the doctors everything was "fine".  You can't judge what you don't know.  If someone pointed out that I looked tired I'd say "Oh I do?  Everything is fine."  My mom is the only one who saw me at my worst.  Crawling to the bathroom when I could barely stand to get out of bed, struggling at times to hold a pen to write because the tremors in my hands were out of control and breaking down completely in frustration because the people who were supposed to be there and make sure all was well had all but turned their backs on me.  She forced me back into a doctors office and demanded that someone figure out what was going on.

Another year passed but I finally got in with a rheumatologist.  She goes through my files and does a few more test and finally after 3 or 4 years of running back and forth to doctor after doctor we had an answer that seemed to fit.  I was diagnosed with fibromyalgia.  Nope, I had never heard of it either.  She gave me and my mom some pamphlets and information to check out to learn more and off we went again.  I found all the books and scoured the internet for all the information I could find.  It was a bit like someone knew my life.  Everything added up and finally made sense.  I had something to tell people if they asked what was going on with me.  The diagnosis was not without it's problems.  Fibromyalgia is sort of the non-disease disease.  It's the catchall term for "hey we really don't know what's causing your pain".  There is no magic pill that makes my sleep patterns normal or takes the pain away.  The best advice I've found it just to get up and move and that'll relieve a lot of the problems.  Sounds great on paper, right?  Get up and move. Ignore the pain and the fact that you haven't slept for more than 3 hours over the last 2 days and move.  That's going to happen.  Even worse than that is the fact that there was some disagreement in the medical community about fibromyalgia.  Some doctors don't believe that it's a thing.  Of course I didn't just read that I had to live it.  Shortly after my diagnosis I changed primary care physicians.  My new doctor was much older than my rheumatologist.  While I was going over my medical history I mentioned how I was recently diagnosed with fibromyalgia.  He immediately asked for the rheumatologists information to get my records from her so he could look them over.  He made a point of asking was she a "young" doctor and proceeded to rant for a few minutes about how these young doctors are too quick to diagnose people with the "buzz disorder of the moment" and that I was entirely too young to have been diagnosed with fibromyalgia.  It changed the entire mood of the appointment.  He drew several vials of blood and was determined to find out what was "really" wrong with me.  I never heard his findings because he retired the next month.  His replacement was a new young doctor who decided that the rheumatologist probably knew what she was talking about and he wasn't going to step on any toes.

I'm going to take a sidebar here to note that a few years later he grossly misdiagnosed meningitis as a muscle spasm in my neck.  I spent 4 days in the hospital. He also misdiagnosed my mom's pneumonia as a chest cold.  We have a new doctor now. 

I don't know if the older doctor ever found anything because no one ever called me with any results and the new doctor didn't seem to have any of the information from the old doctor.  He took over the practice but with new staff and apparently no access to my prior record. A seed had been planted though.  What if it wasn't fibromyalgia? I began to research other possibilities.  There were other disorders that matched me better.  I don't know if I was ever tested for those.  I was and most of the time still am a really passive patient.  I never ask what I'm being tested for when the vials of blood are drawn.  When I've given test results I never ask for specifics.  I have been saying for years that I was going to start over and get a second opinion on the diagnosis I've have for the better part of a decade.  I haven't yet.  I probably should because there are a lot of things for which I could use some answers.  The process is so tedious I think I've been avoiding it.

I have my good days and I have really not so great days.  I don't like to say bad because any day that I'm here is good.  I'm still growing and learning with fibromyalgia.  I've spent more time that I've wanted to explaining why can't always run faster and jump higher than everyone else. I try not to let it get in the way of things I want to do.  I do know my limits and I know to listen to my body.  I've missed out on a lot because sometimes sleep does sound a lot better than going out.  I'm getting better with that.  I'd like to believe that you can learn something from everything.  I've learned from this experience that there is no disease, disorder or anything else that should stand in your way.  I spent a lot of time in the beginning of this being sick.  Good days and not so great days I was sick.  I know now that I'm given good days for a reason.  I need to get up, get out of bed and do something on those days.  It doesn't have to be a lot just getting up and getting dressed and being part of the world is something.  I've learned not to isolate myself when I feel bad.  You never know when a quick phone call with a friend will do everything to make you feel like a person again.  The most important lesson that I've learned is just to listen.  Mostly to myself.  Today wasn't the greatest day for me but I'm up and I'm dressed and I'm writing because I listened.  I know that's corny and it's a lot to learn from something as simple as a diagnosis of fibromyalgia but it was my lesson to learn.  It's not the story of triumph or the woe is me story.  I haven't run any marathons, because I think running is stupid and I haven't begged you to feel sorry for me because I've done enough of that for myself and trust me that was stupid too.  It was part of my story though.  My story will probably never end with "and then I competed in a triathlon"  that's cool.  I'd much rather it ended with; I did everything I ever wanted to do in my own time.