GUEST BLOGGER: Coping with Unexplainable Fatigue
Something that a lot of us chronically ill people have in common is that we have limited energy. A lot of us can only do a small fraction of the thing that “normal people” do. Personally, I only have a couple of good hours each day where I can get out and meet with people, or do work for the SPCA, or even have lunch and shop with my Mom. And if I do that one day, then I’ll probably need to rest the next. And maybe even the one following.
For me, I know a lot of the reason I need so much rest (and have so little energy, a.k.a. “productive time”) is because of the side effects of my meds. I take seven different meds each and every day, and fatigue is a side effect of at least four. Another side effect that comes from individual meds, and the combination of meds that I take, is that my mind is sluggish. I often feel like I’m pushing my way through quicksand when I try to think, to process. That is pretty exhausting, too.
I sleep a lot. I mean, A LOT. I used to sleep for twelve or thirteen hours at night, be up for two, then nap for four or five, and stagger through the last few hours of the day. And when I was awake, I was so foggy, so mired in the quicksand, that my “awake” hours were not really awake, in an aware and able sense of the word.
Now, I have a new med (fairly new, I’ve been taking it since the spring) that helps to banish some of the murkiness and feeling of slogging through quicksand. It doesn’t take it away, but it allows me to have at least a couple of hours a day that I can write, or go out, or do housework, or whatever. And I don’t need to sleep so much: about ten hours at night, and I usually go two or three days without needing a nap. It might not sound like much, but it’s been a huge improvement to the quality of my life.
When I first had my breakdown, I didn’t sleep at all. I rested a lot, and I did probably fall asleep for wee catnaps, but I was desperate for sleep. Psydoc finally found a combination of meds that let me sleep (forced me to sleep) on a regular basis. My sleep today is not particularly restorative, despite how much of it I do. I think that my need for ten hours of sleep to be able to function is like the “normal” person having five or six hours of sleep a night for a protracted period. They can manage, they can get through their routines, but damn, what they’d give for a good night’s sleep. For me, a “good night’s sleep”, in terms of quality and not quantity, is hard to come by.
I’ve also found that I resent having to sleep so much. Not so much at night, but I fight and rail, tooth and claw, against having to nap. Another issue for me to work on. It’s a struggle to accept, especially when I was always on the go, constantly, before my mind finally forced me to stop.
It’s hard for many people to understand that I don’t have an unlimited well of energy to draw upon. My well is rather shallow, actually, and I have to save up the energy for a lot of days to be able to spend five or six hours at someone else’s house, or at a fundraiser, or wherever. And then the well is dry, and I have to spend a number of days letting the water rise again so I can do even the basics, like have a shower or cook a nutritious meal.
Anyway, something that I found immensely helpful, not only for my loved ones, but also for myself, was something called The Spoon Theory. Christine Miserandino of www.butyoudontlooksick.com is the one who created it. It is a way to explain to people who don’t have a chronic illness what life is like when you have one. It is a fantastic story, and I would really, REALLY encourage you to go here and read it. It will truly help you understand, and is better expressed than I could ever hope to do. So go. Now! Read it!
A former lawyer, Linds of The Muse Asylum spends her days carefully. She balances chronic depression and anxiety with her love of written and oral advocacy. Her passions include promoting animal welfare, preventing the abuse of children, and using her own experiences with mental illness to educate others.
TOO UNEXPLAINABLE FATIGUE BLOGGER;YES I KNOW WHAT THE SLEEP ISSUES OF CHRONIC PAIN(RSD/CRPS)ARE.I HAVE DEALT WITH THE FATIGUE FOR OVER A DECADE.I ALSO STILL WRESTLE WITH SLEEPLESSNESS.BUT IT HAS IMPROVED SOME.I TOO TAKE MEDS THAT FATIGUE BUT MINE IS MORE DISEASE ORIENTED.AS OUR NERVOUS SYSTEMS CONTROL SLEEP MINE HAS BEEN DISTURBED SINCE I WAS ELECTROCUTED AS A POLICE OFFICER IN 97WHICH INCLUDED 15 OPERATIONS ON NERVES AND TENDONS,JOINTS.BUT AS MY SYMPATHETIC NERVOUS SYSTEM IS OUT OF WHACK I HAVE TOO CALM IT DOWN.HENCE MORE FATIGUE.IF NOT I WILL GET WORSE TREMORS,SPASMS,CONTRACTIONS, ETC.I ALSO GET A FEW HOURS A DAY I CHERISH WHERE I CAN GET OUT AND ABOUT WITH A NEAR NORMAL LEVEL OF ENERGY.SO YOU SEE THIS IS A COMMON THING AMONGST PROBABLY MOST CHRONIC PAIN SUFFERERS.I STARTED TAKING A MULTI VIT AND MINERAL AS THE PHARMACY ADVISED ME OF THE DEPLETION OF NUTRIENTS THAT HAPPENS WHEN YOU TAKE MEDS.I CAN TELL A DIFFERENCE.MY PAIN MANAGEMENT DR.HAS ADVISED ME TOO TRY CQ10 ENZYME.IT HAS AN ENERGY AND HEART PROTECTOR AGENT TOO IT.IT ALSO PROTECTS THE CELLS SOMEHOW.IN CONCLUSION IT IS GOOD TOO KNOW WHEN WE GO THRU ALL THIS THAT THE LORD IS RIGHT HERE AND WE ARE NOT ALONE.EVEN READING THE BIBLE HELPS SLEEP.YOUR ARTICLE IS VERY GOOD AND GOES INTO DEPTH WHICH I AGREE WITH.I WOULD BLOG MORE BUT I START STIFFENING UP AS I WAS TOLD BY MY SURGEON I HAVE ARTHRITIS OF THE SPINE WHICH WILL DEFINTELY LIMITS YOU.BUT THAT IS WHY WE ARE HERE CONVERSING AND THE WHOLE POINT IN REST MINISTRIES IS TOO “BEAR ONE ANOTHER `S BURDENS”.I WOULDN`T CHANGE ANYTHING NOW IN GOD`S PLAN FOR MY LIFE.AS PAIN IS SCULPTURING A MORE CHRIST LIKE PERSON AND I KNOW IF I DIDN`T SUFFER I WOULD DRIFT INSTEAD OF GETTING SPIRITUALLY STRONGER AND KNOW “PEACE THAT SURPASSETH UNDERSTANDING AND JOY UNSPEAKABLE”I FEEL GROWING ON THE INSIDE AND SCREAMING ON THE OUTSIDE IN BURNING NERVE PAIN AND SOMETIMES CAN HARDLY WALK FOR THE PAIN AND MY SKIN IS ON FIRE.TAKE CARE AND MAY GOD BLESS YOU AND ALL OF US WHO ARE IN THIS BATTLE OF “BLESSINGS OF BROKENESS”TOM
TOM
November 12, 2008
I too use the Spoon Theory, and it helps a lot! It’s things like this that make the giant task of helping someone understand a lot easier on the mind. ~Bella
Bella
November 13, 2008
Great post! I totally understand exactly what you wrote about fatigue. Huh, I’m not alone! lol, I knew that but it’s always a validation when you hear someone else’s story and can relate. I was wondering what medication helps you with being more alert? I would love to know so I can ask my docs about it.
take care and be well,
Michelle
Michelle
November 13, 2008
MICHELLE;HELLO THIS IS TOM.I AM RESPONDING TOO YOUR BLOG ON FATIGUE.THANK YOU FOR THE COMMENT ON THE BLOG.ALSO YOU INQUIRED ABOUT WHAT MED HELPS WITH THE FATIGUE.I WOULD HAVE TOO SAY TWO THINGS.ONE THE ANTI-INFLAMATORY ARTHROTEC(WHICH HAS A MED TOO CALM YOUR TUMMY IN IT)75MG TWICE A DAY.IT TAKES THE CRUSHING STIFFNESS OF RSD DOWN .ALSO ONE ADAY MULTI VIT AND MINERAL HEALTH FORMULA WORK FOR ME.WITH ALL THE SYMPTOMS I HAVE THIS IS GIVEN ME MORE CLARITY AND NOT NODDING AS MUCH.I HAVE NOT TRIED THE CQ10 ENZYME MY DOC HAS ADVISED ME OF YET AS I DON`T NEED IT YET.I HOPE THIS HELPS MICHELE.I WILL LET YOU KNOW WHEN I START THE CQ10 IF YOU LIKE.TAKE CARE AND GOD BLESS,TOM
TOM
November 14, 2008
There’s also a drug called Provigil, which I couldn’t tolerate. Similarly, fibro folks can be helped into regular sleep w/lyrica, it just zonked me beyond belief w/all the other meds I’m on. I love the spoon theory, I should use it moreo w/people, especially when people just can’t understand why I can’t get out or do things no matter how much I’d like to sometimes. I think the struggle for sleep w/out being dangerously out of it is really key to anyone ill. I have been through all the phases, sometimes it’s just that I’m so sick I have to be taking some med or another every few hours. Sometimes I hurt from being in any position for long, and wake up from hurting. I hope someone starts really researching mctd, esp. lupus. I loved this group when it was on yahoo, I hope some of the same people are still around here!
aquariusrizing
November 22, 2008
Boy can I relate to this. It could have been my own words. It is hard for others to understand chronic pain and chronic fatigue. Sometimes I believe it is an excuse for not going somewhere or doing something. Nothing could be further from the truth. Jerry Ann
Jerry Ann Haynam
January 14, 2009
Thanks, everyone, for your great comments. I just now realized they were here, so my apologies!
Michelle, the med I was referring to is Desipramine. I have found it to be particularly helpful in counteracting the extreme sedation I experience on Seroquel.
themuseasylum
March 17, 2009