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Chronic Fatigue makes me angry!

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Chronic Fatigue Syndrome
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Posted 12/10/2009 6:07 AM (GMT 0)
I have never had a doctor specifically say I have CFS (probably because I have never specifically searched out a hard and fast diagnoses for the problem), but I *know* that I have it, as do other members of my family. I also know why I have it: I have a repaired heart birth defect (one side functions at 58% and the other at 64%, but I am able to do all normal activities), I have recurring anemia, and I suffer from depression (although it is managed through meds, even when I am happy, I think something is there dragging my energy down).

Anyway, I HATE it! I always feel like I'm sooooo lazy. I feel like no matter how hard I try, I can never accomplish as much as I would like to in a day. And getting out of bed in the morning is the worst! It feels like such an impossible task. Then, I start feeling depressed because I feel like a lazy bum who can't get anything done. And I am the kind of person who has so many hobbies and interests, I feel like I could live a hundred lifetimes and still never do everything that I wanted. Oh, and the icing on the cake is that I married an early bird who is also the world's most energetic man. He doesn't even drink caffeinated anything because it makes him act like he is on speed or something (I once witnessed this, after he accepted a dare to drink a 2-liter of Pepsi. I couldn't even understand what he was saying because he was talking so fast.), and he can't take naps during the day even if he feels tired. He can't comprehend my level of tired at all. So, next to him I feel like I'm a super lazy slacker, which often triggers my depression. And he doesn't help! He tells me, "Well, if you want to get more stuff done, just get up earlier and try harder. If you really want to do something, you can do it.". He thinks that my "reasons" for fatigue are just "excuses", and then I start thinking maybe I am just lazy and it is all in my head. And no, he's not pushing me to get more stuff done. I am the one who wants to do more. I just feel so depressed right now. I wish I could fix it and make it go away. Why can't I just have the energy of a normal person (or 10,000 suns for that matter)?
Posted 12/25/2009 6:19 AM (GMT 0)
OMG.. We are sooooooo the same! Even marring the early birds! He drives me crazy! Love him to death.. but crazy!

I have been seeing a counciler for over a year now do to feeling so low about myself. It has been one of the best things I have ever done! She is slowly putting my head on straight when it comes to my bad days and feeling like I don't do enough. You might want to try it. It has helped me in so many ways.

For Christmas I asked for 10 million candy bars laced with any type of energy drugs! LOL

Hope this helps a bit :)
Posted 2/16/2010 10:46 PM (GMT 0)
have you ever had a sleep study? I had one and it turns out that I stop breathing about every 5 minutes in my sleep. who would have known? SO now I sleep with cpap machine and the fatigue is slightly better,(just restarted cpap) so maybe look into it.

also there are drugs that may help. Ritalin, adderal, and provigil come to mind.
Posted 2/26/2010 7:05 PM (GMT 0)
LittleBee,
I've had fibro and the accompanying fatigue for most of my life. I have learned a lot in my 58 years and one thing I can tell you is that although you can't always change the way your body feels you CAN change the way you react to the disorder. You are a valuable and caring person. IF YOU WERE A SLOB YOU WOULDN'T BE ON THIS FORUM! You'd be reveling in your laziness.

Learning to accept and handle our disease is a step toward personal growth. Teaching others who love us (and just wish we would get better!) that this is the way it is and the way it's gonna be is another step. Love yourself, look at what you get done every day, not what you don't get done. And most important, KOKO! (Keep on keepin' on!)

Oh, and for further understanding remember that "Housework is the only job in the world that doesn't get noticed unless it isn't done."
Posted 3/13/2010 7:29 PM (GMT 0)
HI, I AM NEW TO THIS FORUM AND LIKE ALL OF YOU ABOVE I AM MARRIED TO A CFS AND FIBRO SUFFERER, BUT I AM THE WIFE!

I JUST JOINED THIS FORUM TODAY BECAUSE I FEEL LOST, LONELY AND ANGRY. WHLE MY HUSBAND HAS NEVER BEEN A "BALL OF FIRE"......HIS ILLNESS AND LACK OF WILLINESS TO TRY ANY SOLUTIONS HAS TAKEN A TOLL ON OUR MARRIAGE AND MOST OF HIS FAMILY RELATIONSHIPS.

WE HAVE 3 CHILDREN AND FOR THE MOST PART, I AM A "SINGLE MOM".....I DO EVERYTHING WITH AND FOR THE KIDS. I AM EXPECTED TO MAINTAIN THE HOUSEHOLD INSIDE AND OUT, CARE FOR THE CHILDREN, JUGGLE SCHEDULES AND ATTEND ALL SOCIAL OBLIGATIONS BY MYSELF. IT GETS TIRESOME AND OLD AND MOSTLY LONELY.

MY HUSBAND HAS BOUTS WHERE HE CAN BE IN BED FOR 11 DAYS STRAIGHT WITHOUT EVEN COMING OUT, NOT EVEN TO EAT, HE JUST LIVES ON THE SNACKS THE KIDS BRING HIM.

HE DOES HAVE SMALL AMOUNTS OF TIME, MAYBE 3 DAYS IN ROW (AND THAT IS HUGE) WHERE HE DOES FEEL "FUNCTIONABLE" AND THAT TIME HE SPENDS DOING ONE OF HIS HOBBIES, NOT SPENDING TIME WITH ME OR OUR KIDS, NOT HELPING OUT AND WORST OF ALL HARDLY COMMUNICATES WITH ANY OF US. IN ADDITION, HE HAS TIMES WHERE HE SLEEPS ALL DAY AND THEN GETS UP AT MAYBE 8:00 PM WHEN THE HOUSE AND KIDS ARE DOWN FOR THE NIGHT. WHEN I ASK HIM about THIS HE GETS VERY VULGAR WITH ME. I FEEL I DO NOT DESERVE THIS AS I AM AN HONORABLE PERSON, A GOOD WIFE AND AN EXTREMELY EXCELLENT MOTHER ON MOST DAYS! I HAVE ALWAYS BRUSHED HIS CRUEL WORD OFF AS PART OF HIS PHYSICAL CHALLANGES, BUT NOW I QUESTION THAT.

I ATTEND WEDDINGS, HOLIDAY FUNCTIONS, SCHOOL FUNCTIONS AND SPORTING EVENTS ALL BY MYSELF, EVEN IF HE IS UP AND HAVING "FUNCTIONING DAYS", HE DOES NOT COME WITH ME FOR THE SIMPLE FACT "HE JUST NOT WHAT TO GO."

HE IS MISSING HIS KIDS GROWING UP AND DOES NOT EVEN REALIZE THAT.

IF IT WERE NOT FOR ME, THE KIDS WOULD NOT HAVE A RELATIONSHIP WITH HIS PARENTS, THEIR GRANDPARENTS, AND AGAIN THAT IS JUST EXPECTED OR HE CPOULD CARE LESS IF THEY SEE THEM OR NOT. HIS REALTIONSHIP WITH HIS FATHER IS ALL BUT GONE AND HIS MOM TRIES TO BE SUPPORTIVE.

THE KICKER IS I AM ALSO NOT 100% HEALTHY, I SUFFER FROM ANXIETY (IMAGINE THAT), TMJ, RA AND LUPUS....ALL OF WHICH GOES UNNOTICED BY HIM.

THE CHILDREN ARE GETTING TO THE AGE WHERE THEY ARE SEEING DAD IN BED ALL DAY ALMOST EVERYDAY AND NIGHT AND STARTING TO ACT OUT. I HAVE BEEN TAKING THE OLDEST ONE TO A THERAPIST.

MY QUESTION IS, IF SOMEONE IS UNWILLING TO SEEK MORE HELP LIKE MY HUSBAND WHO SEEMS CONTENT IN HIS OWN LITTLE WORLD, WHILE THE REST OF US RESEARCH ALL OVER TO TRY TO FIND THINGS TO HELP HIM, WHAT DO I DO?

I HAVE CONVINCED HIM TO GO GLUTEN FREE WHICH HAS REALLY HELPED. BUT HE GETS ZERO EXERCISE AND NEVER SEES THE DAYLIGHT. HE HAS BEEN TESTED FOR A VITAMIN D DEF....AND THE RESULTS CAME BACK 2 WEEKS AGO AND HE HAS NOT CALLED THE DOC BACK TO GET THEM.

I HAVE SUGGESTED HE ASK HIS DOC about VIT B AND OTHER NON MEDICATION WAYS, BUT HE IS VERY STUBBBORN AND AGAIN HIS RESPONSES TO ME ARE LESS THAN PLEASANT....IN FACT I MAY GET KICKED OFF THE FORUM IF I USE THEM. AAHHHH

I AM 44, WITH A 12 YEAR OLD SON, A 6 YEAR OLD SON AND A 1YEAR OLD DAUGHTER...SHE JUST TURNED 1 A FEW DAYS AGO AND HER DAD STAYED IN BED FOR BOTH OF HER CELEBRATIONS....AGAIN WHEN ASKED about THIS HIS RESPONSE WAS UNFORGIVABLE.

I LOVE HIM AND HAVE BEEN MARRIED TO HIM FOR 15 YEARS, BUT THE LAST 10 HAVE BEEN A BATTLE. I AM COLLEGE EDUCATED AND AT ONE POINT HAD AN EXTREMELY WELL PAYING JOB, BUT I QUIT IT BECUASE I COULD NOT BALANCE IT ALL....NOW I REGRET THAT BECAUSE I FEEL TRAPPED EVEN IF I CHOOSE TO LEAVE (WHICH I DO NOT NOW).

CAN ANYONE PLEASE HELP ME TO MAYBE BE A BETTER SPOUSE, ANY IDEAS FROM YOUR OWN PERSONAL EXPERIENCES WOULD MEAN SO MUCH TO ME.

WARM WISHES,

MY GRACIE GIRL
Posted 3/14/2010 8:18 PM (GMT 0)
All i can day is that I agree 100%....IT SUCKS BIG TIME....grrrrrr!
Posted 3/14/2010 8:24 PM (GMT 0)
any suggestionson how to handle him?
Posted 3/15/2010 1:24 AM (GMT 0)
I have had fibro for 23 yrs. His behavior is not acceptable no matter how terrible he feels. He seems rude and uses his illness as an excuse. His behavior is even abusive. Have YOU seen a counselor? You may not have control over the way you feel, but you do have control over the way you make someone else feel. Misery does not like company, misery likes miserable company. Stand up for yourself - you do not have to tolerate verbal abuse! Good luck to you.
Posted 3/17/2010 1:18 AM (GMT 0)
Gracie,

I too am the wife of a man with a chronic illness (hemi-cranium continua).  My husband, too, spends a lot of time in bed, and I often feel like a single parent.  And it is so very hard.  My husband, unlike yours, is not vulger.  Yes, he gets crabby and withdrawn because he is in pain, but for the most part, he is a great guy.   I  suggest you get counseling.   For your sake, and for the sake of your children.

 

Posted 3/20/2010 5:41 PM (GMT 0)
hi thanks for your response......it is good to know there is someone else out there. i am not familiar with your husband's illness, could you explain it if you have time. it sounds like some kind of brain related thing. my mom had a brain tumor and a full cranionony a few years back and is 65 years old woorking full time at a factory job. she is doing ok, but the tumor took 100% of her eye sight in her left eye. that is a sore subject with me when it comes to my husband as millions of people function with what his ailments are.....especially since i suffer from many of the same chronic symptoms and DO NOT JUST OPT OUT OF LIFE!


are you healthy? I HOPE SO.



i am not trying to tp pry. just trying to get a better understanding of what my expactations should be. does your husband attend your childen's functions, celebrate b-days and holidays and attend social obligations with you? as i stated my husband does none of the above, that added with his verbal abuse on all of us is taking a toll.....i just question if i am being fair ir selfish.



fondly.



my gracie girl
Posted 3/20/2010 7:38 PM (GMT 0)
Hi, Gracie,

Currently my husband is in a medication induced remission.  It has only been about three months.  Prior to his remission, he suffered from a unilateral (one-sided) headache 24/7.   This is a very rare disorder (though there are two other people on this forum who have it).  It was only in the last six months that he was correctly diagnosed.

My husband's headache was accompanied by a loud buzzing behind his left ear, and at night he would wake up irritated because he thought someone was out mowing the lawn in the middle of the night.  We suffered through many diagnosis' and many drug treatment plans, many side effects and withdrawls.  The withdrawls for me were the worst, because during that time he would become verbally agressive.  We also struggled through perscribed drug overdoses that caused him to make some pretty stupid decisions.

During all this time, my husband was able to continue working, but only because his job was quite flexible.  He also has a great boss.  But the times when he was home, he was largely out of commision.  For me, this meant I had to be a single parent to our four kids.  I prayed about it a lot and just decided to be the best single parent I could be, and I leaned heavily on a lot of people for help.

I did seek counseling, and for me it was quite helpful.  In addition to my husband's illness, I suffer from Post Traumatic Stress disorder.   Currently I have it under control.  It was at its worst when my husband was at his sickest.  The combination of the two illnesses drove me to get help.

My husband still struggles  with some things.....and me too.  But thing are better for us...in part, because I got help, learned to lay boundaries.

I hope this helps. 

 

Posted 3/22/2010 12:47 PM (GMT 0)
Hi Gracie,

Your post is difficult to address in whole because there are or could be several different things going on within the context of the illness and/or the relationship. What you truly need to do is to separate who the man is (characteristics of personality and life patterns prior to illness) from who the man CURRENTLY is and then make a determination as to whether or not the traits you are seeing now are a result of depression or grief in suffering the illness OR if he was this person all along, and you, as we have all done in at least one relationship, ignored the red flags. It's imperative you be able to determine which attributes are a result of the pain and exhaustion he is suffering with in his illness and which are simply personality traits he owns regardless. As the late Dr. John Lee once said, “Just because you see seagulls on the beach whenever dead fish wash up; it does not mean that the birds killed the fish.” Dr Lee had quite a way of putting things into perspective with bizarre analogies.
There are quite a few books to help you through the process. Here are but a few:
su.pr/2Htkyw
su.pr/2RCSnX
su.pr/29GctH
www.facebook.com/note.php?note_id=171501796615


What's most important, whatever you decide, is that being needed and depended upon, does not negate your responsibility to YOURSELF. If you are not mentally, physically and spiritually intact, how can you be the best Mom you can be to your children? Isn't it your duty as their Mom to take care of your own health and well-being? Maybe you hire someone a few hours a week to help care for the kids and you use that time for a pedicure or a matinee with the girls or even some out and about time with your hubby if he is so inclined. Whatever happens, please take care of you, and know that EVERYONE is entitled to feel joy in this life. It is our right as a child of the universe to receive and give joy, love, tolerance, giggle filled moments and teary eyed memories. It is possible your husband is not going to be a participant in raising your children. If that proves to be true then at least swear that you will be, by first taking care of yourself. You'll see that once you have more respect for your own needs, it becomes difficult to have respect for those who don't support your best interest. Caring for yourself, shines a magnifying glass on the souls of those around you. It will be easy to weed out those who truly foster your self growth and those who hinder it. Surround yourself with those who foster it.
Posted 3/22/2010 2:08 PM (GMT 0)
Wow, what a great answer!!!!
Posted 3/22/2010 5:28 PM (GMT 0)
gracie,

I dont think anyone should be verbally abused. with that said, I think I sound a lot like your husband. Everyone with chronic ilness handles it differently. Sometimes its not easy to handle at all. It sounds like you "suggest" a lot of things like gluten free etc to him. maybe that makes him feel bad about himself. I know when someone tells me that Just lose a few pounds and your be better, it makes me angry and resentful. maybe your husband is depressed as well as the other problems. Depression is a terrible illness. I also get snappy with my husband and kids when I am in pain. I also avoid functions and events. I think it is mostly because of depression.

there are definitely moments in life that you have to put the effort into (like your daughters bday) I think counselling would be a good step. I also think that if you use the fact that you are coping with yo0ur illness "better" than him, it is going to cause problems for sure.

I hope you figure it out and both get well.

melissa
Posted 3/26/2010 3:47 PM (GMT 0)
As Jasmine said, lots of people find help in the CoQ10 stuff. (Didn't do anything for me but Malic acid worked.) And as with all supplements, vitamins and over the counter medications, keep a list and take it with you each time you go to the doctor. This will aid him/her in your diagnosis and prevent problems from drug interactions and over medicating.
Posted 4/15/2010 8:56 PM (GMT 0)
I have suffered from chronic fatigue syndrome and Epstein-Barr virus for 18 years (since I was 33)!  So I understand . . . my energies were low, I suffered from anxiety attacks, headaches, fevers, dizzy spells and could absolutely not excercise.  People think you are crazy . . . I am finally in complete remission (after trying everything out there) and have incredible energy . . . I can share with you if you'd like 
Posted 4/19/2010 6:38 PM (GMT 0)
Cocoa,
Share away, PLEASE! As long as you aren't selling the product or don't work for the company who produces it we are all about sharing information on this website. That's what forums are for.
Posted 4/21/2010 5:08 AM (GMT 0)
 iam new to this sight, not to Healing Well, i diagose my self, then went to my dr and he agrees with me i have Central Pain Syndrome! from a brain injury. i have been trying to get daigose for years. OHSU tested me and they never said any thing like this. they did not know. i have done alot of research year after year! my brain injury was in in 1991. and not much more they can put me on but he did put me on a anti in flam. for get how to spell. and not much more they can do for me. i do have a qeustion would you go back to a dr and let him know with what i was diagose for he told me i was making it all up to get some pain pills what would you do? love packey/wink never give up!!!
Posted 4/21/2010 5:01 PM (GMT 0)
Moderator says we can not share a product we are selling . . . how are people supposed to get well?  I suffered for 18 years w/ a myriad of debilitating immune illnesses (Chronic Fatigue, Epstein-Barr virus) I was introduced to a botanical product that put my illness into full remission.  I have tried every single "hyped up" product on the market -- nothing worked for me!  My girlfriend suffering from Lyme disease, Chronic Fatigue, EBV and fybromyalgia is symptom free after traveling the world and spending tons of $$$ with specialists all to no avail until I introduced this product to her.

To make a long story short, I opted to NOT return to my lawfirm and 6-figure income because I am on a mission to help people on this forum and anyone else .. . The suffering is HORRIBLE especially when no one believes you or thinks you are "lazy."

Anyone out there suffering please call me at 707-652-2604.  There is hope!

Posted 4/23/2010 10:26 PM (GMT 0)
Hey all,
Saw the thread and think it must have been fate. Ive suffered with CFS/ME for around 6 years now, but was only diagnosed recently after years of been poked and prodded by doctors.
Tonight i went out for dinner for a friends birthday, its the first time ive been out of the house on a social occasion in almost 12 months. It has taken me a week to prepare for going out. All was going fine, but after eating it all started to go wrong. My stomach started to cramp, the fog descended on my brain and the person that turned up to the meal feeling slightly chirpy and chatty had gone. For about half an hour i sat, not able to converse with anyone so avoiding talking to people. Eventually, my best friend (whos birthday it was) insisted i go home. He has been such a support to me throughout my illness and he knew that if id have stayed any longer, id be in bed for a week recovering. I think he was probably right, but it still sucks. Its embarrassing to be this way at 26, and yes i know i shouldn't be embarrassed bcoz its not my fault, but it is embarrassing knowing that everyone round a table can see how ill you are. its like the elephant in the room.
Does anyone else ever have the problem of when your in a room full of people the sound goes fuzzy and your eyes start to blur or is that just my particular peculiarity ? Anyway, im home now, have taken some anti sickness tablets and some pain killers and i saw this chronic fatigue makes me angry thread and needed an outlet to share the suckyness my CFS/ME.
Anyway hope everyone is feeling a little less sucky than me
xx
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