Fatigue: What Works For You?

[PrimeTimer]

No matter our illness or situation, we all suffer from fatigue at some point or another. What do you like to do to cope with it? What helps you? Hubby has ESRD and is on dialysis and I'm on oxygen for Pulmonary Sarcoidosis. Both of us struggle with fatigue. Some days are better than others but when fatigue strikes, it's a monster. I don't want to lay in bed or just sit and rest. We both have things we need to do and want to do. We pace ourselves and that helps but fatigue always wins. Anyone have a strategy they'd like to share? No offense but I really don't want to talk herbal supplements or lab tests, just want some practical ideas. TIA. 

[Simon Dog]

What do you like to do to cope with it?

Biphasic sleep.

[MooseMom]

Biphasic sleep?  I'd never heard of that!  That sounds interesting.  Do you have experience with this, Simon Dog, and if so, does it help?

When I feel fatigued but don't want to sit down the rest of the day, I do some gentle stretching.  I have one of those long stretchy bands and use that, but they are not necessary.  I do find that just sitting outside helps.  There's something about breathing fresh air that invigorates me.

I hope you both find something that helps.  Let us know, OK?

[Simon Dog]

Biphasic sleep?  I'd never heard of that!  That sounds interesting.  Do you have experience with this, Simon Dog, and if so, does it help?

https://www.healthline.com/health/biphasic-sleep

I stumbled into it - I often fall asleep on the couch after dinner, get up around 11PM and am active until 2AM or so.  When I get up after a couple hours napping, I feel great and not sleepy for a few hours.

It happens more often when my wife insists on watch a "we are pretending to pick a home" show; Life after Lockup or 90day fiance.  When I get tired, I fall asleep easily if I am not mentally or physically occupied.

[PrimeTimer]

I call biphasic sleep "fragmented sleep". Thanks to Prednisone and fatigue, I get a lot of that and hate it. I want good quality sleep at night and during the day, a good QoL. I am getting neither. MM's stretching is often mentioned amongst Sarc warriors. I wonder if it helps to relieve stress. A long nap feels good but with fatigue no amount of sleep helps. Unless I get deep REM sleep I do not wake up feeling refreshed. But if I lay in bed or sit for too long it makes things worse. Coffee doesn't help and neither does skipping the caffeine. Because I'm on Methotrexate I can't sit outside too long so that's out. The other day I went for labs. Walked from the apartment to the car and from the car to inside the clinic and back again. Next thing I know, hives! Was told that in addition to having Pulmonary Sarcoidosis I also have Skin Sarcoidosis but the Methotrexate also plays a number on me.

Anyways, I will give stretching a try. The biphasic sleep seems acceptable among sarc warriors, they say to do what feels best and that when you feel you need a rest, then rest. But I want to be able to be up and about several hours before needing another power nap. Hubby gets a good sleep and then does better but a good sleep for him is rare these days too. Stressss....

[UkrainianTracksuit]

Good evening Pea Tea,

I won't be the first to tell you that a lot of remedies are out of the window when there are health impediments and it is (mostly) the health issues that are the root cause of the fatigue. You know this intrinsically. It sucks. Like you noted, time outside isn't something workable, just like a caffeine boost or hydration might not be applicable for your husband. It's a lot of trial and error.

One thing I know for sure is that when people lack oxygen, they are just plain tired and exhausted. I don't know what your stats are running these days (not my business either) but I think anyone would expect you to feel more than a little exhausted. This whole situation makes me sad not that you came here for stranger pity.

I'm exhausted all the time. Sleeping is better lately as I can get up to 5 hours a night now. Just can't sleep. I find myself in like 17-18 hours-awake days. Most days I don't take a nap. But you know what? On those days that it feels unbearable? Take the nap. No one would blame you. Sometimes you just need a little recharge to get over the next section of the day.

Like MM said, gentle exercises like stretching help. Even a little dancing in spot helps though it looks silly. Whatever movement that you can do to recharge.

When I feel tired, I listen to some upbeat music or something I put on heavy rotation because I like it so much. Energy often comes that way. More psychological but physical, but it helps.

Not sure how this would influence your husband or you, but a cold drink or a cold piece of fresh fruit or vegetable gives a bit of energy. Sometimes with a cucumber in the house, I like to take some chilled slices and rub them over my face from time to time too.

Still on the topic of food, I find spacing my food out in little portions during the day helps. It's probably more psychological too, but the whole, "oooh, I get _____ *something I like* in x mins/hours, I better keep at my task to make the time fly by" helps for me.

Probably nothing helpful here, but the struggle is real!

[Simon Dog]

One thing I know for sure is that when people lack oxygen, they are just plain tired and exhausted. I don't know what your stats are running these days (not my business either) but I think anyone would expect you to feel more than a little exhausted. This whole situation makes me sad not that you came here for stranger pity.

Fingertip O2 sat meters can be had on Amazon for about $25.

[UkrainianTracksuit]

Already have one from a home health care shop (don’t shop at Amazon) and pretty sure OP knows about oximeters with her condition. 

[MooseMom]

"Pea Tea" (I'd forgotten about that!  Thanks to You Tea for that nickname!), I knew nothing about methotrexate so did a bit of research, and I see that it can make skin more sensitive to the sun.  Is that correct?  If so, I can tell you this, that while I do like being outdoors, there are times when bad weather keeps me in.  On those days, just stepping outside and getting a few breaths (however constricted they may be) of fresh, rain washed air is very nice, not only for my energy level but also for my mood.  I don't think it is necessary to sit outside for hours.  Actually, I keep my windows open for as long as possible throughout the year.  Just having some fresh air in the house is helpful to me, but I realize that with your pulmonary problems, it may not be an ideal way for you to go.

I'd bet that you've already worked out that chronic stress/illness really does a number on your head.  And when that stress is almost a constant in your life, well, there are few things that are more enervating.  What do you and your husband do for simple pleasures, for taking your minds off your troubles?  What little things make you happy?

But, like You Tea has said, sometimes you just need the damn nap.  Also, I like her idea of a cold drink.  I'd never really thought about it, but when I do feel fatigue, some cold water does help.  Most of us are probably a bit dehydrated, anyway.  I remember reading somewhere that older people sometimes simply forget to drink.  It made me think of my father when he was old.  I don't remember ever seeing that man drink a glass of water.  He'd have a half glass of milk with each meal, and then he'd sip on a couple of cups of coffee during the day.  That was his entire fluid intake in a day.

Anyway, I hope you get some more suggestions and are able to try them out.  I'm curious to find out what works for you!

[PrimeTimer]

Thanks MM and UT. And yes Simon D, I have an oximeter. I watch my O2 closely. We live in a 963 sqft apartment. By the time I walk from one end to the other I am exhausted, feels like I've lost my legs and my O2 goes from 94 to 88. And that's with the O2 on. Really sucks. But I want to keep plugging away to gain physical strength and exercise my lungs. Fatigue is getting in my way and it's depressing. Hubby is use to being active so when he has fatigue he's really depressed too. We don't want to be Superman but it would be nice to get thru the day without suddenly feeling like we are going to die.

I am especially bad at keeping myself hydrated but admit, when I do I feel better. Hubby of course has to watch his fluid intake but eating small fruit cups seems to be helping him. I use to do that, perhaps I need to get back into the habit and make that part of my daily diet. I like UT's idea about music, too. Haven't done that in a while. Don't really know why I stopped. We both got very sick last Christmas and a Christmas CD is still in the boombox. Guess I never played anymore music since then. How pathetic is that?!

If I could I'd beg to be taken off the Prednisone just to sleep at night...but know better. Some call it "the devil's tick tac's". Well, that's one way of describing it.


 

 

[UkrainianTracksuit]

Pea Tea, I just want to say that I in no way completely understand your situation and equate my experience on the same level as what you deal with on a daily basis. I just have a little minor insight into your oxygen stats and know that your fatigue is very real.

No pulmonary sarcoidosis but I was left with some lung scarring after an infection. I was on heavy duty oxygen requirements for a short period. Anyway, it took physiotherapy to get me walking again, and from oxygen in the mid-90s sitting down on my bed to simply walking a few meters, it dropped into the 80s. Not only was there like an elephant on the chest, but everything felt heavy and dragging. It's like a whole other sort of exhaustion.

I know that you want to exercise your lungs and gain your physical strength and you can surely do that. It might seem to defeat the purpose to lay in bed and not want to have a nap, but have you considered some bed exercises? These could work for your husband too. (Um, I realize this sounds wrong, but don't take it to be.) But, I did some things like slow snow angels, leg raises, etc, that helped with exercising muscles and left me energized because I felt as though I accomplished something. And hey, sometimes snow angels are fun, even on a bed. If you are interested at all, drop me a line. I've got a PDF or two with these basic moves.

[MooseMom]

Ooooh, yes!  I love You Tea's bed exercises suggestion!  Actually, even for healthy folks, I've seen some recommended bed exercises to do before beginning your day.  Also, I remember reading about some gentle exercises for people who are wheelchair bound.

And when I say "exercise", I don't mean the kind that would make anyone huff and puff.  Just small, gentle movements that keeps the blood flowing, as they say.

I'm really sorry you are having to deal with this level of fatigue.  It must be frustrating.  I'm hoping that after a period of trial and error, you'll come up with some solutions that work for you.  I don't want you to become inert.

[kristina]

Hello,

Fatique is very difficult to deal with and always "accompanies" a chronic disease. Unfortunately there is no answer at all, but sometimes some little tricks can help a little.

One of my favourite pieces as a "wake me up please" is by Georg Friedrich Händel and it helps me sometimes and, if the fatique is not too bad, it may even invite a little to try and dance - despite everything.

https://www.youtube.com/watch?v=vdAgwlM1hJw&list=RDvdAgwlM1hJw&start_radio=1

[MooseMom]

Handel IS good "wakey wakey" music!  It's amazing how music can affect our mood and energy level.

[PrimeTimer]

I'm liking all of these suggestions. Thanks SO MUCH everyone! I knew I would not only get support but offers of doable and real solutions here at ihd. You "kidney" people on here always rally 'round each other and talk things out and come up with some very good ideas -no matter the subject. While I don't want to knock them I have to say that there is not much support (at least not like there is here) out there for people with sarcoidosis. They talk a lot about their symptoms and frustration but not a lot about how to cope. So thank you very much for your help! You guys are not only masters at coping but LIVING. And that's what me and hubby both need; to learn how to keep moving and going forward. 

[kristina]

Thank you PrimeTimer for your kind thoughts ...

... and here is another little "wakey wakey", an Italian version of an evergreen in the English language and perhaps this version is a little more invigorating?

https://www.youtube.com/watch?v=cnU_hgFp8G0

P.S. Sorry if one of those youtube-adverts "creeps" in ...