M, I'm right there with you.
My boyfriend is very loving and tries his best to be supportive; I have to give him credit for attempting to understand a very confusing disease that I am often overwhelmed and confused by myself! However, when he wants to do a lot of fun activities on a Saturday and I feel like crap I tend to suggest, “why don’t we do ONE fun activity and then relax around the house the rest of the day?”. He’ll constantly try to negotiate with me, tell me to take an ibuprofen and I’ll “be fine”, etc. He just absolutely doesn’t understand the severity of the symptoms I’m experiencing despite his best efforts – mostly because I rarely “look sick” to the outside world! It is very frustrating. The other thing is just like you said above -- you tell them you have a fever and they immediately think, oh you have a "bug!" when we know that its the Lupus. I get joint pain and muscle cramps every few days or so REAL bad, and he'll ask me EVERY TIME without fail, "what did you do to bring THAT on?" As if we're climbing mount everest in our sleep or licking bathroom door handles to get sick.
After the 100th time explaining myself I just feel like not talking about it with anyone else except for fellow sufferers anymore....I’m excited to start posting on this blog! After spending most of my life with unexplainable symptoms that no one else understands, can relate to, or wants to hear about – I’m looking forward to a little “bitch-fest” once in a while with Lupus ‘friends’ who can truly relate and understand! We all need a little empathy once in a while. Hang in there. I understand you too.
30/f California. Diagnosed November, 2011
Plaquenil, Xanex, Ibuprofen, Omega 3 complex, Iron, Vitamin D, Calcium, Cranberry
I get joint pain and muscle cramps often but they are almost always more severe or isolated to my right side. In fact, sometimes when I drive my right foot and/or knee starts to have stabbing pains and I either have to put the car on cruise control, or drive with my Left foot to survive on long car rides! If I don't, the pain can be excruciating! Today the joint pain in my wrist and hand was so bad, I ended up controlling the mouse on my laptop with my left hand, and typed most of my emails with just one hand today. It's truly crazy how the pain just settles on one side of the body like that. I've searched medical sites and none seem to mention this phenomenon but if you look at this and other Lupus/SLE message boards I've seen comments like these relatively often.
I wonder if/when they'll figure out why??
My boyfriends lack of understanding also usually makes me doubt myself as well. I'm constantly thinking to myself.. well maybe I'm not that sick or maybe the doctor was wrong. I had a realization last night while getting ready for bed. It was that unfortunately I am sick and the doctor was right! It's not normal to constantly not feel well and be exhausted, to have mouth sores, to have purple feet, to have sores of your feet, to have a low grade fever every night, etc etc etc. I went for a "jog" with a boyfriend this past Saturday. I put jog in quotes because even I have never jogged so slowly, but my boyfriend set the pace and deep down he must know I can't do it. But we did this 3 days ago.. and my legs have never hurt so badly, still. Every day it's something new.
I read your post and I am so sorry that it took so long for you to finally get diagnosed. I can't even explain to you how angry it makes me. After reading post after post of people saying that it's taken 15+ years to finally be diagnosed it's almost enough to make me go to med school. Your daughter is very lucky to have you so proactive in her life. Since you are her biggest advocate I am sure she be able to find health.
Look forward to more of your posts!
Oh and happy Lupus Awareness Month!