Chronic Tonic at VOTS-Napalot

I used to be pretty active. I was never what you would call athletic, but I did recreational things, I traveled, went camping, went out and about, you know, did things, went places. These days it seems like there's only one place I ever go, only one place I get to regularly and that's Napalot.

Napalot, the land of Nod, Siesta, whatever you want to call it, almost every day for two hours or so I'm going to need to lay down and go to sleep if I can. This is usually going to happen sometime between noon and three because that's when my kids are in school and that's how it works out, but I've been known to be flexible and grab the odd nap after supper or even mid-morning if need be.

Because I am exhausted. There's a kind of tired that comes with Fibro that is hard to describe without sounding melodramatic. If you tell people, "Look, that whole Thanksgiving meal and the aftermath? That took a lot out of me and I'm having trouble moving today." They look at you funny. If you try to explain how you have to break down the housework into manageable bits and pieces or what things your husband does for you so that you're not out of commission for several days over it--you get "the look." And I'm sure some of you know what look I'm talking about, they might as well have the word "dubious" stamped on their foreheads. So, it's not like they'd understand that daily trip to the land of Nod. Here's the thing--I don't care.

I used to care, used to feel judged and try to convince people that I really was sick or I really was doing what was best for me, but you know what? What anybody else thinks does not matter. When you have an invisible disability there are always going to be people who do not understand, who will never understand, they may not want to, am I going to let that affect what I do or feel? I can't. So, some people think it odd that a grown woman who looks healthy enough needs a nap every damn day, that's a shame, but I don't have to justify my nap to them--I just take it.

 

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omg - i resemble this post...

poligirl's picture

with my fibro, the pain is a PITA, but the real issue is the endless exhaustion. and yeah, i look fine yet feel like crap.

i really really really try hard to regulate my sleep. i try to go to sleep at a fairly regular time every night. with OTC meds,  I fall asleep much easier. the regular time can be screwed with a little on the weekend, but I'm mostly still pretty consistent.

ahhh but the weekend... i let myself sleep as late as i can, which truly varies wildly, as fibro screws with the brainwaves. and i always take a nap on each weekend day. this is the only way i can get energized enough to do the work week the next week.

and of course, life gets in the way sometimes. the past week has been brutal. a TStorm shaved almost an hour off my sleep last night so I'm extra tired, and between cats and *forgetting* to take my meds the night before (first time evah forgetting), i had about 4 hours. to top it off, i worked all week last week including the holiday, my only day off was Saturday and now I'm working til Saturday. i'm exhausted and it's only Tuesday. /whine

as far as doing things, damn, i have no energy. i have to drag myself to the store if i must go, and if i have a little energy, a wild night for me would be going across the street to my neighbor's house. i just don't have the energy to do things. i have to save it up and it takes me a while to recover if i do anything big...

napalot - i'm a big fan. i like to travel there as often as possible.... 

great post triv!  :D

 

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Napalot is a fabulous place!

triv33's picture

And I don't even remember most of my dreams anymore. That kind of sucks, I miss remebering my dreams, one of my meds wipes them out. If it wiped out all of my pain along with them it might be worth it, but it doesn't.

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i'm a frequent flier... :D

poligirl's picture

i don't remember my dreams most of the time either. but i sleep better than i used to...

this is about as well regulated i've been with teh fibro ever... it's workable...

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Am jealous of the two of you!

NY brit expat's picture

I think because I process memory visually, I have very vivid dreams, which I would love to not remember, but always do. :D It would be nice not to wake up saying what?! once in a while. :)

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weekend sleep

nemesis's picture

That's what look forward to all week.  Chronic leg/back pain drives me crazy.  They say I have to learn to live with it.  Dr. Feelgood needs to make an appearance soon.  Muscle relaxers and painkillers don't really help.  Just ice and rest.  Recently I'm using an old Nordic track to build muscle, so we'll see how that works.  

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Having to learn to live with it

triv33's picture

really sucks. Up until the point you get one of those you kind of get used to saying, "fix it." and then they do. Onced they can't it takes years to learn to live with it.

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i had to learn to ignore some of it as best i can...

poligirl's picture

i'm always in some kind of pain, but with as bad as it can get, teh normal everyday pain i have been able to, for the most part, learn to not think about....

and of course, now that i'm thinking about it, the skin on my legs hurts, my hip joints have a dull ache, and my back muscles on my right side hurt... GAH!  back to trying to ignore it, lol...

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brain fog and cold

northsylvania's picture

I'm sure your doctors have tested for thyroid function, but the one I go to now did blood tests and, though the thyroid numbers came back low normal, she prescribed 30mg of Erfa thyroid. I used to think I had Reynaud's, and had a horrible time getting out of the brain fog, but unless it's extremely cold things have gotten much better. 

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yes, northsylvania,

triv33's picture

on my mom's side of the family there are several on synthroid and my mom takes it as well, so naturally mine gets checked, but it's in the normal range so far. I wish I could blame this fat butt on that, but no~

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i had a wonderful rheum in SoCal that i went to...

poligirl's picture

for 10 years - til i moved. he used to do blood work every year. i got lucky on my thyroid... just fibro and osteoarthritis for me... and i do have Reynauds... can't tell you how much i hate the cold...

glad you got the Efra scrip and it's working!  :D

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