Dealing with fatigue and family

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themaker75
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/11/2010 3:39 PM (GMT -7)   
For the past year I have been feeling extremely fatigued and my joints were hurting. I'm in my mid 30's and the past year I had my wife telling me I'm a lazy ****** my parents on me about sleeping too much. Since I have been diagnosed with lupus nothing has changed. It's like people simply don't understand. I'm nervous to just take a nap because I get crap from my wife. I do the best I can do everyday because I'm tough. I'm a former Marine I've endured trials most people never will. If I need a nap it's becaue I need  nap BAD! I'm ready to explode and walk out. I don't expect to be babied or have roses thrown at my feet, just some understanding.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/11/2010 3:49 PM (GMT -7)   
Hey there! I am so sorry you are not getting the much needed support! Have you read the spoon theory? it was written by a fellow lupie and it couldnt be written any better. It helps family and friends somewhat understand what you can be going through on a daily basis.

Have you looked into joining your local chapter for lupus? You can find it at the LFA's website. Support groups, in my opinion are the best thing for us lupies. They really understand what we go through and its just nice to meet men and women in your area that you can relate to!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/11/2010 10:19 PM (GMT -7)   
I know lupus is rare in men and that finding a support system when you are a man with lupus is hard. Perhaps your wife needs to be taken along to a doctor's appointment and have lupus explained to her and have your doctor tell her naps are necessary. Maybe she needs to come on here and ask about lupus fatigue. If she doesn't get the hint you may be better off without the stress of worrying what her reaction to your need for a nap will be. Stress is our enemy and it sounds like she adds a lot of stress to your life.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/16/2010 3:20 PM (GMT -7)   
I have a friend who was mildly complaining that her husband takes a nap in the living room recliner, then he wakes up and walks to the other end of the house to the den and takes another nap in that recliner in there and then he goes back to the other one.  I chuckled to myself and then explained that he isn't being lazy there are just simply days that that is all we feel like doing and that is all our body will allow.  He is 61 years old and has been dx for 3 years now.  He retired last year and has been sick ever since.  I can understand that she is afraid that he has given up and is sleeping because he doesn't have anything better to do but I also told her not to give him a hard time.  If there is something that she needs or if she is going somewhere that she thinks he would like to go also then wake him up and tell him about it otherwise leave him alone.  Last friday they found out that he has developed Sjogren's syndrome as well.  Now she is listening to me that he isn't just being lazy.  I pray that your wife realizes how life is with Lupus very soon.  I understand the guilt with all the naps, I feel that way sometimes, but I also know my limitations and if I don't go to my room and shut the world out once or twice a day for 30 to 60 minutes then I will over do myself and be worthless the next couple of days.  Lupus is a whole new way of life.  It sux but we and our families have to make the best of each day.  Good luck.
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