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lady.elea

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Well, now that you have been sufficiently lured (and oh the laugh I will have at myself if this comes to nothing but lonesome tumble weeds and errant dust devils), please endure this merciless onslaught of words and show yourself to be the steadfast victor by sharing your thoughts.

This is my attempt to either bolster my courage through anecdotal confirmation and see a doctor, or indulge in my most loved and over-utilized coping mechanism, analysis paralysis, wherein I obsessively research under the self delusion of "preparing" and confidently take no action whatsoever all while feeling wildly productive. It is creative avoidance, except you can trick yourself into believing you are not procrastinating indefinitely.

Background/Health:

Single mom since my daughters birth with no family to help. She is 6, wildly active, and brilliant, but she got a basket of mommy's junk genetics which can be draining for both of us. Lots of therapy in this family. I am diagnosed with PTSD, Bi-Polar Disorder, oodles of anxiety, and ADD because co-morbidity is a dream beyond measure. I realize the mental disorders make me immensely more vulnerable to stress and the PTSD = terrible coping mechanisms when stressed. I endure all forms of discomfort with humor and lots of words. One of these is likely debatable in quality, the other is unquestionable in quantity.

Average health, used to exercise several days a week, but exhaustion has gotten the best of me. Active on my good days, which actually turn them into GREAT days. I have a desk job but MUST get up at least every hour and a half or I lose feeling in random parts of my body (if I'm lucky, when I'm not the pain blooms like a thorny rose). I smoke and drink coffee, and yes I am fully aware of how absolutely moronic that choice is in general. I try to balance it out by healthy eating, drinking water, and avoiding buildings with asbestos and gremlins. I've been tested for hypothyroidism in the past, negative. I do have this party trick where I randomly take a "floor nap". Some call it fainting. Doctor kind of sort of shrugged and said it sounds like Vasovagal syncope. My vagus nerve attacks me, because apparently it didn't get enough hugs as a child. I did have a 3 day heart monitor test done, because apparently random floor naps since childhood are not what the cool kids are doing. My heart is fine. I am hypotensive, but that is assumed to be the vagus nerve picking another fight. My average basal waking temperature is 96.6 which is less corpse-y than you'd imagine. Also I very very rarely ever get sick. It is shockingly rare. Seriously, I can keep going with the health stuff...I just don't know what is or isn't relevant.

Many of the issues down below have existed to varying degrees for as long as I can remember; the last few years have really taken the full body breakdown bonanza to a whole new level.

Lovely, here comes the vulnerability induced anxiety.

My fear is being ridiculed or discredited if I am diagnosed. I have been encouraged to look into it by two separate friends who have it as well as a nod of recognition from a friend whose MIL has it. It did not click in until this weekend that I may have been missing the forest while running into all the trees.

Enjoy these Examples:

"I'm just a 60 yr old in the body of a 30 yr old. That is why I can't walk sometimes if I've been sitting for an hour or two. Hahahaaaaa *groan*"

"I'm just feeling lazy...that's all. Lazy and exhausted are pretty much the same thing, right?"

"Oh I just didn't sleep well...I know I never sleep well. But hey, some people just don't sleep well. It doesn't mean anything is wrong. What were we talking about? Wait, where am I driving?"

"Everyone's body feels like there is a nest of fire ants in the muscles and joints from time to time, right? No? Liar..."

"You know how you wake up and feel exhausted so you try to sleep in, except your joints and muscles cramp and burn? Isn't that the worst!? What do you mean that isn't a thing? Yes it is! Like...like how you wake up throughout the night sometimes and have to shift around because you've been in one position too long so every part of your body that had weight on it feels like frozen fire. How long is too long? Well an hour or two. Anyway, I mean it is like that except EVERYWHERE, so you...so you have to...get up? What? Are you backing away from me?"

"Dang it, give me a minute...I hit my (insert body part here) against (insert literally ANY solid object here) and now it is numb. Ugh, feeling is coming back, yup this is gonna hurt. Anyway, what were you saying?"

"OW! Oh, sorry cute-face, please don't hug mommy right now. My body hurts. Oh honey, no its ok. I know you didn't mean to hurt me. My body hurts. No sweetie, I'm so sorry, a hug won't help...*sigh* How about if you just sit very very carefully next to me, just please promise not to wiggle. I know, I know...I always say that...please accept this ice cream as a token of my unbridled guilt and sense of parental failure" <---said so many times I'll cry if I try to count them. At least the bribe isn't always ice cream.

"Meh, this isn't the first time someone has passed out at work, why do you all act like it is such a big deal? I woke up! *Mutter* Drama Queens..."

"You know how standing too quickly or too long makes you nauseous and like you will pass out? How do you handle that? Wait, no? Uh, jk LOLZ..on an unrelated note, I need to sit down. Now."

"Sorry I'm late. I sprained my neck, back, and shoulder while putting on my shirt. Don't look at my like that! Seriously, could you move a bit more into my line of sight? I can't turn my waist, shoulders, or neck"

"It is so cold my whole body hurts, shut up, I know it is 60 degrees (about 16 Celsius) how are you not wearing a coat? I've got fleece thermals on under my clothes to stave off this arctic misery!" <---COLD WEATHER = SHARDS OF FROZEN GLASS...so glass that was in the freezer? I don't know, I'm not a glass scientist!

"Look Doc, I just really need to get a handle of the molten pit of death in my stomach. How long has it been? Geez, years...since childhood? But really that isn't the problem, it is the tightness in my chest and neck from inflamed esophageal tissue. I can breath, but the sensation is not pleasant. I figure that means it might be getting bad, worse than normal. Burning stomach pain isn't normal? I knew that...*whisper* I didn't know that" <---Yes, real conversation. My doctor judges me and I have made peace with that.

"Sure X is always hurting (X being anywhere on my body at any given time), but of course it is probably a bruise, pulled muscle, hex...or um...my unconscious husk moonlighting as a tri-athlete in training while I think I'm asleep? Cause yeah...that...clearly..."

"My eyes hurt. Light hurts. I hate the sun. I hate light bulbs. I hate lamp. The dark is scary though"

"I'm so sorry kiddo, mommy is all out of batteries."<---Feels like I say this everyday for nearly every request

"Is it me or is everything in the world too much of what it is? Sounds are too sounding. Sights are too sightful. Smells are too smellish. Taste is too tastely. DON'T TOUCH ME! Please get out of my bubble. I can feel your exhalation on my hair and it hurts. Hair can too hurt! You aren't a hair scientist!" <---There is nowhere to hide.

And countless other fun conversations including the ER visit that resulted in expedited gallbladder surgery. Why did I wait so long? Because I always hurt...so it didn't really stand out amidst the cacophony of pain. It certainly perceived, but not enough to register as an emergency. The assumption of high pain tolerance has recently been giving way to "if you hurt all the time, pain that shouldn't be there gets mixed in with all the rest. You are feeling it, there is just too much else going on to pin point it"

I indulged in a little self exam based on the tender point test. I included random push points as well to mindfully gauge overall sensation. This gave me a base point for "neutral" and then the real fun began. It was awful. Just. I can't even imagine having someone push down on any of them (note: I dutifully applied the recommended pressure, undesirable sensation was registered prior to that point). All 18 either felt like I was jabbing a bruise , caused the whole area or a corresponding area to blossom in pain, or caused a line of weirdly cold yet numb yet much ouch to shoot out in either direction. The discomfort would last for at least 5 minutes after the fact.

Despite those few, and seriously those are just a very few, examples, I have always perceived Fibro as a legitimate diagnosis for everyone else, but surely not me. By that I mean, clearly I don't DESERVE to be diagnosed with an actual ailment. In my mind I am weak and my body is junk, the only thing wrong with me is that I cannot maturely cope with perfectly normal minor discomforts that everyone experiences daily with the dignified dismissal such inconsequential sensations actually warrant. Meanwhile, there goes attention seeking Lady Elea, hobbling around, kneading her back, constantly grimacing and fidgeting and gasping, oh look! Is she about to "pass out" again? She needs to grow up, toughen up, and just deal with it like the rest of us.

But worse than the pain.. what if it is true? What if this actually comes down to my inability to deal with something very normal. God how crushing that would be. The longer I don't say anything, the longer I can let the pretty butterfly of hope flutter around carrying the unfulfilled dream of some small relief. That is more appealing than the risk of finding out I'm weak and muscle relaxers or an anti-inflammatory (I won't even dream such far fetched dreams of pain killers) are not an option because either they won't help or I don't actually need (deserve) them. I'm not ready to put that butterfly in the killing jar just yet.

So then, friends and neighbors, questions? Comments? Does this sound like anything at all? I can list off geez, just so many more examples of body fails. Is this worth looking into? Did I mention I'm a single mom? Money is not plentiful. I really cannot afford to bounce from co-pay to co-pay via the web of unending referrals. Is there a way to circumvent that nonsense, schedule with a specialist, get the tests lined up, knock them out, and have a verdict? If it is a negative on the fibro and I'm a hopeless case, fine. Insert butterfly into jar, drop cotton ball doused with ether, screw on the lid, and set that lovely hope on the shelf to die.

Um....*Jazz Hands* The end...
 

moe1959

Very helpful member
Joined
Sep 13, 2014
Messages
708
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
wa.
Wow I feel about oh 1/16th of an inch high right now. What wit, what creative writing. You are brilliant! Have you ever though of putting your skills to work? I can Imagine you standing in front of a crowd sharing your gift? You nailed it!
For me, I will be saving this for a long time, and if I can ever remember to hook
up my computer to a printer, I will be printing this off and sharing with My Doctor's, and whoever will listen. This is by far the best writing I have read since receiving my pink slip of life, I mean diagnoses.
You go! Where have you been? Where ever it was, don't go back!
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
sounds like fibro to me. get to a doctor that beleives in fibro. better to get some releif now and play with your child then wait until you cant do it anymore.
 

Dizzyray

Member
Joined
Jun 1, 2015
Messages
25
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
CO
That was very entertaining and spot on. I have had so many similar conversations to your examples! I would highly encourage you to head straight to the Rheumatologist!

I hate lamp. you cracked me up!
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
The first few lines and I said to myself she's got bi polar lol.
Shame is even if u are on fire with your writing skills the bubble burst as u say and u do sod all. Ps I have it to.
But I loved your story even if I did need to stop for a tea break winks.
And yes u do sound like u have fibro to me.xx
 

wisgrl

New member
Joined
Jun 24, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
00/2008
Country
US
State
WI
lady.elea, I have had fibro for several years. I'm no doctor but I have to say it definitely sounds like fibro to me. You describe exactly how I feel most of the time. I think you should go to a medial doctor as fibro is a physiological condition. My PCP diagnosed my with fibro after one appointment, but my rheumy took his time.

Don't be surprised if doctor does not give you fibro diagnosed right away - some doctors need time to rule everything else out. My rheumy took years of doing tests, trying different meds, follow up appointments to assess me before starting to discuss fibro. Unfortunately I do no think fibro will be fully accepted in the medical profession in our lifetime, so you need to go with your gut feeling on which doctor to stick with.

You truly have a gift with words...if you wrote a book about your personal journey with fibro I would buy copies and hand them out to everyone I knew!
 
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