Talk about feeling demoralized. I just fell asleep while eating some soup in my chair. My dear husband has to help me clean up. It went all over me. I had slept earlier so shouldn't have fell asleep.
Just had to sound off after this.
susanep
Currently I have a morning nap, afternoon nap, and evening nap or more. I may nap if bad weather comes in. I may nap if I am not interested or have recently watched the TV program she has on. If I spend too much tablet reading, I nap.
This pattern has been getting worse with this disease. I do not think it is connected.
Joe that is about the way I am now. It makes me feel like I am missing out on my life, but don't know what to do about it.
I hope yours doesn't get any worse.
Thanks for your experience with this.
susanep
Susan, I know the feeling. I don't do this a lot, but I go through episodes of sleepiness that just hits me. I have been tested and don't have narcolepsy. I think that I just get overtired and have these nodding off times that will just hit.
I have spilled everything there is to spill. Mostly coffee, which can really burn, and water, ice, lots of diet Mt Dew, carbonated water and occasionally a small malt. I have caught myself more times than I can count when I will jerk and just catch myself starting to drop off and almost spill my drink. Really disgusting, is all I can say. I have learned to not hold my drinks in my hand except when I am sipping.
If you are like me, I never, ever, ever, fell asleep like that in my whole life until the past couple of years. Usually I don't fall asleep easily. Irish
I just started using a cup with a lid and a straw for cold drinks and a stainless cup with lid for hot beverages. My grandchildren think it's cool that gramma has a sippy cup like them lol.
When I drop or knock them over little to none spills out. Got tired of doing the extra laundry my spills caused.
I get sleepy too, but not to the extremes you all are talking about. One thing I must get out, Irish it is not disgusting when you fall asleep with a drink in your hand! You can't help it and I hate to see you put yourself down for anything. You are such a wonderful help on this forum and deserve only positive reinforcement. JMHO.
sixty, I am so sorry to have used the word disgusting. I did not mean it as "yukky". I was referring to the fact that I can't stay awake and it is disgusting.
I am afraid I used the wrong word and that is "disgusting"!! Thanks for the nice note. Irish
Have you been tested for thyroid disease (hypothyroidism) and/or adrenal insufficiency?
When I was in a flare, I would fall asleep on a dime. Just drop over dead. I would sleep for 48 hours pretty much straight through with an occasional 5 minute up time here and there to apologize to my husband. I couldn't explain to others how "extreme fatigue" worked. I would here, "yeah, I have that too." but knew darn well that they didn't understand exactly what I was saying by "EXTREME" fatigue. Then I would have insomnia at times that I couldn't sleep at all for 48 hours. Drove me absolutely crazy.
My muscles would be fatigued too. I couldn't even hold a pencil at times.
I would like to think that Plaquenil has been my life saver. It has helped me (or something has) for the past two years. I only get a rare occasion where I can't stay awake. Usually it is right after having a sleepless night or two. But I wouldn't call it fatigue when compared to what I had before.
I have hypothyroid and have been on thyroid meds for years. I also have been on prednisone for many years. I doubt that these have any impact on this sleepiness. I think that my sleepiness is related to the fact that I have not slept well since the year 2000 when my autoimmune issues became much worse.
I also have myasthenia gravis(autoimmune neurological disease) that causes muscle weakness. Fatigue hits me and more likely there are times my muscles may be having weak spells at the same time. Irish
I have been going to bed earlier, and getting up early in the morning to see the sun come up. Just about my bedtime now. lol..
I take meds for hypothyroid.
All I know is nothing works right anymore. ::)
susanep
Quote from: susanep on June 11, 2015, 09:05:41 AM
. It makes me feel like I am missing out on my life, but don't know what to do about it.
susanep
I would wake up and then say 2hrs later my eyes would be literally crossing.. with fatigue/exhaustion. Then back to bed.
I stated keeping a sleep.. that is what I call "crash/naps" log.
And 'yes", I felt as though I was sleeping my life away.. my own wake/sleep coma life.
In my situation ----> chronic inflammtion -----> chronic flare.
I have learned that with the inflammation the type of sleep we get is not restorative.
Cytokines --> neurotransmitters. So we wake as exhausted as when we crash. Or we only have a very,very short reprieve. What I termed not a good ROI (Return on Investment).
And missing so much of life.
Frustrating.
Quietdynamics it is frustrating. I have noticed so many things with these autoimmune disorders being so frustrating.
Here is hoping we all have a good weekend.
susanep ;)