I'm onnawufei, aka The Onnawaffle which explains the running waffle jokes throughout my blogs.

I'm 29, married and work as a requirements analyst, which means sitting in my cube all day and poking at a database. I also do meeting minutes, which means more sitting in my cube and poking at my brain.

I was diagnosed with fibromyalgia in... 2009 I think. I also have hypothyroidism which as far as I know is under control. I take two Lyrica twice a day and am coming off Savella. I take Tramadol when the pain gets too bad, and sometimes I take more than I should.

I have massive brain farts, I hurt, I get tired, I whine, I cry, I feel sorry for myself and then I pick myself up and pull myself together.

Things that aren’t there.

So yeah, I see things out of my peripheral vision that aren’t there.  A lot.  At least once every couple of hours or so maybe?  Usually I tend to think it’s a spider or something, though by now I’m used to it enough that it doesn’t make me jump anymore.  I just sort of pause and watch where I thought the “something” went.  The something is generally moving, and will disappear under some random object.  (For instance, this just happened and it disappeared under a bag I have on my desk.)

For the most part I chalk this up to being “just one of those things” but there are days when it’s really frustrating.  And so help me God if anyone tells me I’m seeing ghosts I will hunt you down purely for the sake of hitting you with a fish.  I believe in ghosts and all, but what I’m seeing is all in my head.  I’ve got that one down already.  Unless I’m seeing ghosts of spiders past, in which case… fuck.

Anyway, I more or less just wanted to vent my frustration.  This isn’t something I talk about because when I have in the past people have assured me it’s all in my head, which y’know… I know.  That doesn’t make it any less aggravating.  If someone were to say they were aggravated because of a cough I wouldn’t tell them “oh, it’s all in your lungs” because that would be dumb.  

That’s really it I guess.  Just had to vent.

May 22nd, 2012

So a few minutes ago I was sitting in my cube with a tissue to my nose because the woman in the cube next to me had way too much perfume on.  But then I started to wonder if maybe I was the problem, not her.  I’ve heard several times that people with fibro can have hypersensitive senses, but I’d never really looked it up.  The following quotes are from this website.

For those that experience fibromyalgia hypersensitivity, one of the most common symptoms is a sensitivity to sound. Many patients often find that they find noises more troubling than ever before. If the patient is highly sensitive to pain and/or pressure in the body, it is quite likely that they will also be quite sensitive to the sounds that surround them.

Simple sounds such as the television, the radio, people talking, children crying, dogs barking, and even a phone ringing could result in not only an intense degree of pain in the FMS patient, but also an intense level of stress and anxiety.

I’ve noticed for a while now that certain types of noises make me feel incredibly anxious. I never thought it could be related to my fibro though.

For example, Ryan and I were in line at Wal-Mart and this person’s motorized cart thing kept making this very loud beeping noise.  I think it was an alarm to signal the person isn’t on it (they could have fallen) because the woman didn’t turn it off before she got up.  As the beeping continued it went from annoyance to me being incredibly anxious.  If given the option I would have just put down whatever I was buying and run out of the store.

There are many patients that have fibromyalgia that have a keen sense of smell. When the central nervous system of the body is hypersensitive, it typically involves all of the senses. Just like with the characteristics of being sensitive to sounds, those that have a very low pain threshold will often experience sensitivity to smells.

In many cases, the individual that experiences this form of smell will discover that this is a new symptom once diagnosed with the condition. The instance in which this is especially troublesome is when the individual is subjected to chemicals and other items that have an especially strong scent. This is especially true when an individual also experiences multiple chemical sensitivity.

I don’t know that my pain threshold is low, but I’ve definitely become more sensitive to smell.  I can’t tell you how many times I’ve complained about smells and whoever I’m with tells me they don’t smell anything.  

Perfume (as mentioned before) and car exhaust are the worst.  Both of those can make me nauseous in minutes.

When it comes to fibromyalgia hypersensitivity, pain is the most common symptom that is experienced when sensitivity to smells, sounds, and even light may experience it in the form of pain. In addition to this, simple touches, clothing, and even something as simple as taking a shower or walking in the rain may result in pain to the individual that experiences this type of complication.

This one was kind of a no brainer since as it says, it’s the most common symptom.  There are definitely times when a simple touch can hurt terribly.  And sometimes my shirt rubbing against my back will hurt to the point where I have to take it off and either sit without a shirt on or find a really really soft one and just deal with it hurting a little less.

That’s pretty much the end of my babbling.  I was most interested in the sound anxiety thing, which is why I decided to post about it.  

Oct 25th, 2011

I bet my depression is what makes my fibro kick my ass so much.  They’ve joined together in some unholy union and have vowed to make my life as difficult as possible.  In my mind they’re sort of like super villains.  No capes.

Aug 30th, 2011
Relevant.

Relevant.

(via acesecrets)

Aug 18th, 2011

Not at all related to fibromyalgia.

If hearing about “alternate” sexuality bothers you then just pass this one by.

Read More

Aug 17th, 2011
"Devastation was my usual reaction to things I couldn’t comprehend. It would start with mild anxiety if the answer wasn’t at the ready, and would progress to full-blown terror, physically manifesting in sweating, yelling, crying, hitting myself on the head, and chanting, “I don’t understand” until I was exhausted and on the verge of collapse."
Portia de Rossi (via onnawufei)
Aug 11th, 2011

Fatigue

When I was younger I’m not sure I ever even used the word “fatigue”.  If I was tired, I was tired and that was that.  Body tired?  I’m tired.  Head tired?  I’m tired.  No need to bring fancy words into it, and by fancy I apparently mean “more than one syllable”.

Unsurprisingly (lots of syllables there!) I’m pretty well acquainted with fatigue now.  It’s like that creepy uncle who shows up at family gatherings and though you’d really like to be anywhere but in his presence, it’s pretty unavoidable.  Fatigue isn’t quite as easy to get rid of though, which is saying something because I distinctly remember trying to get away from family members and it not being easy.

Once upon a time fatigue wasn’t even in my vocabulary, but now I know it well.  It’s immense and it’s heavy.  It turns everything into a chore and even just sitting around doesn’t help, because fatigue sits down with you and reminds you that your limbs are made of bricks and your head is a lot heavier than you remember it being. And there is absolutely nothing you can do about it.  There’s no pill to get rid of fatigue.

I would love so much to go back to the days where I was just tired.  But I can’t.  

Fatigue sucks.

Aug 3rd, 2011

Attention difficulties and… bamboo pens?

See how I cleverly made a title that actually included a question mark so people could “answer” reply if they wanted?  I’m quite proud of myself for that… which is a little sad.

Anyway, I was relating to Laura how stupid my brain is, and I thought why not put it on tumblr?  Makes sense… I guess.  

I quite often make comments about my ADD brain and the problems it gives me.  I have never been diagnosed with ADD, but I’ve never asked the doctor about it either.  By the time my mom learned that ADD even existed I was already a senior in high school so neither of us really saw the point in me being tested, even though I displayed multiple symptoms.  And now that I’m an adult, I know that fibromyalgia can cause your brain to be kind of sketchy, and on top of that Lyrica can cause issues such as difficulty concentrating so I’m not sure there’s any point in mentioning it.  I’d love to get it under control, but at the same time I’m not in any rush to add another pill to my daily routine.    So to make a short story long, I have self diagnosed ADD, possibly brought on by fibro or medication.

I write in a physical journal.  Today I was looking some things up online and thought I’d get a few thoughts about it out of my head, so I started to write about it in my journal.  I reached into my pen cup and grabbed the bamboo pen I got from the Atlanta Zoo.  This is the first page of today’s journal entry:

Why do I still have this damn bamboo pen at work?  It’s so crap to use, my hand keeps sliding down on it so I have to hold it tighter, which hurts.

Okay, I switched to my Ripley’s Aquarium Lethal Weapons pen.  Supposedly me and Maus are going to Ripley’s this weekend.  I’m trying not to get my hopes up just in case.  But that’s not why I started writing!  This has all been a product of that damn bamboo pen.  I should just take it home and stick it with my other souvinere (whoa I misspelled the shit out of that) pens.  Why is misspelled so hard to spell?  I’m always leery about using it because you look really dumb if you spell it wrong.  But that is not the reason I started writing.  DAMN YOU BAMBOO PEN!  I should tweet about this.

Yeah.  And when I went back to writing I first wrote about how I told Laura about this and that I may make a tumblr post relating to it.  Though for the record, I did finally write about what I was originally going to write about.  (That sentence seems redundant.)

I’m really not sure what the point of this was, other than to relate a bit of derp to others.  So if you have fibromyalgia and/or on Lyrica and your brain is pudding then you are not alone.  I guess if your brain is pudding for any reason you’re not alone.  I’d say that we should unite, but we’d probably get distracted before we actually got there.

Jul 27th, 2011

stochasticlife answered your questionGo ahead. Bring it.

I know several people with Fibro, including myself, with multiple tattoos -including myself- often in especially painful places.

Maus was getting a tattoo on her upper chest area, which is the area that generally hurts the most for me when my body decides that being touched should hurt.  I did mention that I wasn’t sure I could get a tattoo there because of the sensitivity.  

Jun 23rd, 2011

Go ahead. Bring it.

Recently my friend Maus and I have been discussing tattoos quite a bit.  She was getting her first and like most everyone getting their first tattoo, she was trying to get an idea of what the pain would be like.  I told her what I tell everyone else, that it reminds me of cat scratches.  Of course it can be pretty painful sometimes, but I’m not really sure I even take that into consideration anymore.

When people talk about the pain, I’ve always said that it’s a temporary pain for something permanent, but recently I realized something else.  Fibromyalgia is painful.  Really painful sometimes.  Really really OH MY GOD MAKE IT STOP painful sometimes.  So what on Earth is a tattoo artist going to do to me that my body hasn’t already done?  I’ve been in so much pain that all I could do was lay in the floor stare at my ceiling and cry, but even crying hurts because heavy crying generally involves some movement.  Unless I end up in a horrible flare after getting the tattoo, I don’t see a tattoo artist being able to top that. 

So uh… thanks fibro… I guess.  If nothing else you’ve definitely changed the way I look at pain.  Oh, and the two or three (it depends on how you look at it) tattoos I’ve gotten on my arms since developing fibro?  No serious pain at all.  I didn’t even get a flare afterwards.  Woot.

?

Jun 22nd, 2011