How do you describe "our type of fatigue" ?

[inga]

I can't sleep.....that is, I can't fall asleep easily.

I would describe my fatigue as the 'Jimmy Hoffa Syndrome'....mired in concrete.  I literally can not move.  Whether this relates to my neuropathy or not, I dunno....regardless, it is akin to experiencing the gravitational forces of Jupiter.  I force myself to move and even make myself have responsibilities that make me move, but, I can't say I move fast.  Outside....I am finding myself increasingly attached to my garden tractor to get around my property!  Sheesh.  Never the less, I do get a substantial amount of stuff done, living on a small farm....no option but give it all up.  Last evening, I managed to shock myself on the electric fence and hey....I slept pretty darn good....had a few nightmares, but other than that....I slept all night....and no palpiations!

I just bought expensive 'trekking poles', but I have not resolved the issue as to hang onto them with my gimpy hands....oh...whatever.

When I get to 8pm, I commence my lucid coma state and stay that way until the wee hours of the night....when the few hours of sleep I get, start.

[lynnmarie219]

Oh Inga...what a way to describe your fatigue...mired in concrete, huh? That pretty well sounds familiar too!

Oh and please be careful of those electric fences...ouch!!!

[bob212]

Mine is like a bad case of jetlag with headache.  I am not "sleepy" just totally exhausted and, of course, that wonderful brain fog.  I am fortunate that  don't (yet) have the joint pain.  So I do try and force myself to do some physical activity and find that it does help.

[JannaLee]

Inga, you are hysterical!

When I was a child I ran into the electric fence 3 times in one evening!  My grandfather told me even the dumbest cow learns faster than me!

Janna

[harlin]

How do I describe fatigue? Well I feel like someone opened my mouth and sucked all the life out of me. It is so undescribable. I know I just have to lay not sit down and in time it will go away. I have done this twice watching my grandkids, pretty scarry.

You just get this overwhelming feeling that you can't go on. Sometimes my mind wants to go but my body just won't keep up. It is saying whoa hold on now, I am not doing that.

I like the "mired in concrete" term, it is just exactly how I feel. Sometimes I am so tired but my eyes won't close.  I don't know why when you are this tired you can't sleep. It is like the brain and body are disconnected.

I don't know if I am making any sense, I think the fog is moving in.
love to all, harlin

[lynnmarie219]

When I was a child I ran into the electric fence 3 times in one evening!  My grandfather told me even the dumbest cow learns faster than me!

Janna....you are too funny...or should I say your grandpa's comment is too funny!  Thanks for the laugh!

And yes Harlin....you made perfect sense.....at least I understood it......maybe "sjogrens brains understands sjogrens talk"?? 

[kwolfsheimer]

I had a really sad moment today.  My son was home from school. He's been tired lately and has been taking a nap in the afternoon. He came home today and said, "I'm not going to take a nap today. Dad told me that I should avoid sleeping during the day because I'll turn into you."

That really hurt. I'm not sure his father actually said that, but I know my whole family doesn't understand what I am going through. I do nap during the day and there are some days when I can barely come home from work. I find that I have one night during the week that I have to crash, where I fall asleep early and stay asleep.  I have severe sleep problems and I don't go into stage three sleep. I wake up every fifteen minutes (not completely). 

I am so tired!! My "brain fog" is so bad that I can't remember simple things anymore-- like people's names. I'm not sure how long I can stay this course.  It is hard to explain to people how absolutely tired I am.

[lynnmarie219]

(((((((((kwolfsheimer))))))))))

I can certainly understand how a comment like that would hurt you...I would feel the same way. And the thing of it is...it was probably said as a joke or in passing, but when you hear it back...it doesnt feel very simple or funny.

We definitely understand how the fatigue feels here....so if others can't understand it.....you know there are people here who do! 

[SassieCat]

kwolfsheimer

I think too that your husband may have intended this to sound 'cute' but it felt anything but.  It is sad that even tho the people who live with us and see what we go thru evey day don't always understand how we feel and how some off hand remark can hurt. 

Hugs from those who do understand!!!   

[Seeker]

G'day all,  Here's my offering. (I even have a name for it.):  Jacob Marley's Syndrome.  Just like Jacob Marley in, A Christmas Carol, I feel loaded down with chains..   

[rose24]

It happens so fast. Like someone unplugged me. I can't speak or turn my head. I've always thought of them as episodes    My kids call it the "mommy can't talk time". It is so intense that I couldn't explain to my so doctor weather I couldn't speak because I was neurologically unable or from a fatigue so deep it trapped me inside my own body.

Rose

[tomsmom]

I like all of these descriptions.  I just wish these episodes could be more predictable.  One moment I'm my version of fine and the next I have to find somewhere to lay down because my body just quit on me.  Going to the store is like playing a game of beat the clock.  How many things can I get before I feel like I'm going to pass out from exhaustion?  How are there medicines to help erectile disfunction and none to adequately combat autoimmune fatigue??!

[kwolfsheimer]

Thank you lynnmarie and Sassycat for the understanding. I don't think that most people understand what we go through, which is why it has been SOOOOO helpful to have this forum where I can listen to people who are just like me.  It validates how I feel and makes me realize that I'm not just lazy or crazy when I want to break down and cry because I can't do anymore-- can't take anymore.

I was talking with someone the other day and realized that I wasn't making sense, I was so dadgummed tired.  I haven't had a moment that bad since my first child was born and I had that postpartem fatigue!

[meow]

I had been feeling really good since January, but this past month I'm starting to drag. It's been an especially hard week at work, a lot of administrative bs, and I had a student cuss me out--first time ever, in 19 years. It's the end of the year, which is stressful---but I'm finding myself falling asleep as soon as I sit down at home. 

[notwavingbutdrowning]

I'm new here and can relate to all your descriptions. I describe myself like a tyre with a slow puncture which should be filled with fresh air every night, but never ends up full as it's leaking out almost as fast as it's being pumped up, so I start each day deflated and it just gets worse as the day goes on.

Not waving but drowning pretty much sums it up too!