Your post was really touching. I am sorry for your Mother too.
John "JC" Colyer said:
I'm 50, growing up I knew the word Lupus because my mother had it but didn't know anything else.
I'd come home some afternoons and find my mom sleeping on the couch in the middle of the afternoon, that wasn't my mothers way ,now I realize it was the Lupus. I had no clue and my mother didn't understand, Dr's had no clue,seeing the support you give each other makes me realize how alone my mother struggled.
Hey think I missed something I saw above that here's a link on an article on fatigue. But I didn't Find a link
Can someone repost
Rob
Ps on John my mom was never diagnosed my oldest sister was and pased from complications...my mom like me always had blood clots so I kinda think everything else she suffered from would lead a Dr today to call it what it is.. I first thought you were another male with this dmmm thing but I realize now that it was your mom...nice way to honour her. She would be proud
Here you go Rob:
http://www.hss.edu/conditions_understanding-fatigue-lupus.asp
Hey think I missed something I saw above that here's a link on an article on fatigue. But I didn't Find a link
Can someone repost
Rob
Ps on John my mom was never diagnosed my oldest sister was and pased from complications...my mom like me always had blood clots so I kinda think everything else she suffered from would lead a Dr today to call it what it is.. I first thought you were another male with this dmmm thing but I realize now that it was your mom...nice way to honour her. She would be proud
I have had few friends, who either got sick themselves or worked now with Rheumatolgist as counselors. They talk with patients about their emotional well being so doctor can concentrate when he sees them on medical....then later the counselor and Rheum discuss both and help doctor to decide what might be best treatment to present to patient.
It has been working excellently....but my friends have all called or emailed and said how come you never said how bad you really were feeling. Well i did not want to sound like whiner...also i have felt this way about all my life so it is my life ...and i did say some things as i pointed out to them. Plus..both had seen me sick but just not my worse....so they knew i was pretty sick...they just did not want to see it..i think.
even my husband who was wonderful about me when i was sick..hold my hair as vomiting and much worse things...he did it without complaining and with sense of humor....or say compared to brains on road i saw it was nothing! to try and make me feel less a burden.
BUT even he said until he got sick himself he did not have clue how hard it was or painful.
So old saying about until we walk mile in other person's mocassins...do we fully know them. this is so true, for many things in life!
Lupus taught about that and to try very hard to see things from other persons point of view...since who knows what is going on in their lives.
As all things...we can learned from it all....i am glad you now know and i hope that she is still alive so you can say these things to her!
I also think hopefully, that your mother had friends she spoke with..you meet them in waiting rooms and libraries reading on them..back at your mom's age about mine..we had to go to the hospital libraries to find all research on lupus. I made many friends there over the few years till computers finally came out.
So i sincerely hope your mother did not suffer alone...as that would be so lonely...hopefully she did make friends...even my doctors became my friends. I have been truly blessed by having some really gifted and with huge heart doctors in my life. I only hope i can once again tell them all this. hope you can tell your mom too....if not sure she is hearing you now!
What a wonderful story to share...so wonderful that both of you are willing to share these episodes.
DeAnne
Hi mj, having this LUPUS stuff is no fun !!! we never know what the days will be . Relaxing helps alot and also try not to STRESS. Try not to do so much in one day , hang in there - it comes and goes !!! When am hurting , i go get on the heating pad and shut down for a couple of hours . hope that this pass for you , take care and talk with you later... Beverly L.
Having fatigue is very common. I sleep at least 8 hours at a time and am still tired. When I have bad nights, and sleep less, it’s even worse. I’ve always been like this. It’s just sort of something you have to work around. Every once in a while if I know I’m somewhere that I can’t get in a nap, I’ll take some B12 and that helps some. B12 works better on some people than others. I know people it works miracles on. For me, it just makes me able to push through. Hope you figure out what’s best for you!
This was true of me for a long time after the diagnosis. However, with time and learning to cope with it ...the right meds prescribed...vit D....and a great supportive doctor...I feel somewhat on a level plain right now. I am not sure of your age; however, could you be dealing with hormonal issues as well? Or do you have young children? I find the less stress in my life...has helped.
But I do not apologize for my daily nap after lunch. I need it and all of my friends respect 2 - 4 for me!