How do you describe "our type of fatigue" ?

[Bucky]

Along this same line of fatigue . . . what do you say to people when you just HAVE to go somewhere and be quiet and rest for even 5 minutes??

I just came back from visiting my family in another state.  I did all the driving - 1,100+ miles round-trip.  Up early, go all day, stay up late at night for 10 days.  I was able to get one nap in the whole time.    There came a point one day where I just felt an overwhelming wave of "I can't stay awake one more second" in the middle of the day while visiting.  I excused myself and went to the restroom (but really sat in the recliner (it really WAS a recliner, NOT the commode!!!  heehee) in the area where we were staying for 5 minutes of closed eyes.  Oh I wished I could have squeezed in a half hour nap, but didn't know how I would pull that off or how I would explain it.  (My extended family doesn't really understand about Sjogren's.)

What do you guys say when you just have to get somewhere quiet to rest when you are out and about around other people and it's not just a matter of "going home".??

Bucky

[lynnmarie219]

Hi Beverly Jane!

Just want to welcome you to Sjogrens World. I'm glad that you found us and hope you continue to find the information here helpful. You will also find a lot of support and friendship here as well!

Isn't it nice to know you are not alone in this?? 

[Leelabird]

Wow, I am learning so much from this site about this disease.  I am all of a sudden feeling so much better (not with my body), but just knowing that I am not crazy.  Thanks to all of you for sharing.  I've tried to explain to my husband what my fatique feels like.  It is so difficult for really anyone to understand that when I am done...I am done....period.  Wiped...no return until I rest.  I leave for work early in the morning so I can put in my eight hours...by the time 3:00 rolls around I am literally pushing myself to keep going.  I find I'm better in the morning than I am later in the afternoon.  Although...I come home and sometimes nap...then I find myself up later...(like now) and can't sleep.  What a cycle. 

My fatique feels like someone has worked me for days ....I'm tired to the bone...excercised until I can't move any more.  If I lay down I feel so much better. 

Which...is what I'm going to do now.  Best, Gail

[Net]

Hi Bucky-If I'm around people, like at my lunch hour at work I throw my shades on and find an extra chair to put my feet on...and I just explain to anyone around me that I'm not being stuck up I just can't function right now and a nap is more important than lunch at this point. Sometimes even 5 minutes actually helps.---Net

[agatha]

Ha, this is an interesting thread.  I describe it as 'the feeling that a vampire has visited without me noticing - all my vital juices have been sucked out'.
Agatha

[2crazyboys]

My fatigue is feeling guilty of not getting up to wash clothes, clean house (maybe dust one room), cook dinner because the kids are home (from school), do something at least.  I want to lay down and sleep and as someone said earlier, you sleep but don't feel rested.  Then I go through phases (right now) where I don't sleep at all.  As my fatigue gets worse, I stop listening to people speak to me, the noise is so bad that I shut people out.  I get irritable and snap at everyone.  I just want to be left alone, but can't with 3 kids and a husband.  It is hard to try to look happy and calm when all I want to do is hide in a corner and rest.

[harrigan]

My type of fatigue is when I watch people speaking and nothing goes in ... when I hear in my head the words I can't be bothered to say aloud ... when the absolute best in the world is coming home to no. 3 son just putting the vac away having done all downstairs ... or when I climb into bed and its the best place I've been all day!

There is a healing power in solitude at these times.  Sleep isn't always practical, but 10 minutes alone, in a silent place, can revive me for a while longer until I'm reunited with my 1st love ... bed!!

Anyone ever tried a flotation tank?  I haven't but would really love to do it.  The thought of being somewhere dark, silent and supported by water is so appealing.  XX Ailsa

[agatha]

I think what you said about silence is very important Ailsa - I find noise sucks out my energy even if I'm relaxing in a chair - I'm so glad I didn't become a primary school teacher as I once planned - the noise of children shouting would have killed me!

is anyone else really really bored because of the fatigue - I want to read and talk and do stuff and I can't so i rest  but in the meanwhile I'm so so BORED!!!

Agatha

[Babs659]

I also can't stand loud noises.  It stresses me out big time, then the wooziness hits, and I have to sit down for a while.

[ozgood]

I worked shifts of every kind in a factory for 17 years , often working 4 days in a row at 16 hours ,  I thought I knew what fatigue was before this disease ,  NOT EVEN CLOSE !   

[Kirtida]

I strongly feel 'our type of fatigue' actually needs a NEW word to be coined... The dictionary meaning of FATIGUE just cannot encompass the overwhelming physical and mental exhaustion that a Sjs patient often feels. I have often told my docs how I suddenly want to lie down in the middle of a crowded street because I can't lift a limb... or how I feel I am being pulled out of a dark dungeon when its time to wake up after a supposed whole night's rest or how I feel like I have been wrung out of a washing machine like laundry... or how I cannot take a phone call since I am too tired to talk and how I cannot manage the children as I am just not able to think coherently...

Luckily... this doesn't happen everyday! I have learnt to LISTEN to my body...STOP and rest whenever I can and also before I am worn out. I have learnt to prioritize my life, plan my schedule to take breaks and no longer feel guilty about changing plans even at the last minute. I have learnt to communicate better with friends and family and over the years they too have learnt to accept my debilitating fatigue.

Also I have been very meticulous about my medication regime, visits to docs and monitoring tests. From not being able to stand on my feet for even 10 minutes... today I lead a near normal life thanks to medication, lifestyle changes and a positive attitude towards my illness.

One of the drugs that has been a life altering in my case is Atenol 25... a Beta blocker which helped me overcome my autonomous dysfunction. Extreme debilitating fatigue is more a thing of my past...

[jordozmom]

Hello All!  First time to this forum.  Love this thread - I bet I've used just about every one of these descriptions to try to convey to people what the fatigue is like.  But it was so neat to see them all here!  You guys are so fantastic.  It is like I found my mothership (everyone is like me instead of me being the odd one out because of my "disease").  I've used the flu one, the weights tied to my limbs, the gravity - all of them.  I tell people it is like everyone has a gas tank and mine is just smaller than everyone else's, so I run out of gas sooner.  And it is SO unpredictable.  I never feel the same way at the same time from day to day.  Right now I want to crawl up onto the desk and take a nap - by this time tomorrow I might be baking cookies or cleaning the house.  This thread made me think of last night - I got home from work and was just EXHAUSTED - I nearly crawled into the front door.  We had pizza for dinner because there was no way I could make anything, and I sat on the couch with my feet propped up watching Aliens all night.  When the movie was over I thought to myself that I needed to go lay down in bed and get some rest - but I had been resting on the couch all night!  I actually laughed out loud at myself - that I had done nothing but sit on the couch for the last few hours watching a movie and still I felt like I needed a rest!  Sometimes you just have to laugh at the ridiculousness of the whole thing!

You all take care and I look forward to more fantastic posts!

[Jesse88]

Hi all!  I've been reading your posts but I don't see what I have sometimes experienced....that is, a shaky feeling, like my blood sugar is down and I need to eat, but eating doesn't stop it.  I've just begun to wonder if this is related to the SS.  Does anyone else experience this and knows if it's SS related? 

[Scottietottie]

Hi Jesse 

Are you on prednisone? I believe it can make you feel like that. Some thyroid conditions can make you feel like that too.

Take care - Scottie 

[Jesse88]

Hi Scottie,

No prednisone.  I'm on 400 mg. Plaquenil and 200 mg. Imuran daily.  My thyroid tests were normal when last tested.  I just spent three wonderful, but exhausting days caring for my two grandchildren (3 1/2 and 1 1/2  years old) and though I started out fine earlier in the day, by lunchtime (my usual time to crash) I started getting those "shakes."  No one has mentioned this in their fatigue descriptions so maybe it's not related.