I don't know for sure if I have Lupus or not. I see a specialist on Wed. But my symptoms have continuously gotten worse over time.
Anyway, lately I feel as though hubbage thinks I am faking or using my problems as an excuse to stay in bed or call in sick to work. It is so depressing and lately all I do is cry because he just doesn't understand how much pain I am in every day, every hour!
I try so hard to be a good Mom and wife. Then, he says well, you slept for 3 days how can you be tired? etc. I say I have an illness.....I am sore constantly, every joint in my body, even my toes are swollen and sore. Sometimes I can't get out of bed. I wish you would just try for one day to understand, I am doing my best. BLAH!! He just doesn't. THese types of illnesses are so mysterious and since people can't visibly see a problem then they think you're fine and you shouldn't complain. I am so tired of crying and being upset and stressed. How do I make him see what I'm going through. I need his support and caring right now, not insults! I just don't know what to do.......I'm so upset and sad....I hate this illness, I hate it so much....I can't even go down 3 steps without pain.....I work 2 jobs, I have 3 kids...Man, what more can I do?
I am sorry to hear your husband does not understand what you are going through. My mother was diagnosed with Lupus back in 94 and my father also didnt undertsnad how she could feel so bad yet look healthy. He still doesnt seem to understand what she is going through. They have divorced due to other circumstances and my mother has remarried a wonderful man who goes to her doctor visits with her to better understand what she is going through. What I suggest you do is take your husband along with you to one of your doctors appointments so he can hear what your doctor has to say about you sickness. That way he can better understand it and also ask any questions he has about. I hope things get better for you. Have a nice day.
I feel for you and your situation. You need to figure out some way for your husband to be more supportive, or keep his mouth shut. If you're doing the best you can, what else can you do? Feeling bad because you can't do the things you used to do, or want to do, will NOT help. My Lupus symptoms were directly related to intense stress, and my understanding of the disease is that stress makes it worse. Until you get your symptoms better under control, you should think of all the ways to minimize the stress you are under, so your body can start to heal. Rest and relaxation are very important. Good Luck.
It took my husband years to realize what I go through. I also go through cycles of utter exhaustion. Pace yourself. My doctors finally explained it to my husband and to me this way -- you have only x number of chips to get you through each day. If you use more chips than your body has to spare for each day, then you start to get more exhausted. Each day you use more chips, you get "in debt" and get more tired. The only way to "get back your chips" is to sleep.
Doing too much will deplete your resources, so will stress, and many times - just enduring the day!!!
You need to find a doctor who understands what lupus does to families to talk to your husband. Everyone in the family must learn to help you. This does not mean that you are to become dependent. But, everyone close to you must understand how you react to stress and exhaustion -- and they must be made to understand, that unless you re-charge your batteries, you may become extremely ill and may even die!!! Lupus is a serious disease!
The problem most people around you will have is that you will look "fine", when you feel aweful. They just can't understand that your immune system is attacking yourself -- inside of you. They can understand someone with a broken leg, because they can see it. Your loved ones must become aware that just because they cannot see what hurts you, you are still sick. And you are much more severely ill than someone with a broken leg. Lupus can decide to attack any part of you.
Lupus attacked my unborn babies! I had 9 miscarriages out of 10 pregnancies. Then, it decided to "eat" my ovaries, altogether until I had to have a hysterectomy.
I feel very lucky that lupus has not "turned" on my kidneys or other major organs. But I get tired very easily, get depressed, and get arthritis and migraines.
My husband does finally, "get it", and he still has days when he thinks I am using my lupus to get out of doing things. This is just the way it is. You must get your husband to understand, but it will always be hard for those not afflicted to sympathize with you.
There will always be people who think that you are not really sick, that it is all in your head. But, you need to get your doctor to help make sure that your husband is NOT one of those people.
Also, go to doctors at teaching hospitals, where they have the latest information -- there is so much about lupus that no one understand, so new info is always coming in. Finally, these doctors see so many of the worst cases, that they recognize problems early. Many of the mainstream doctors do not see enough lupus patients and do not study enough about lupus -- that they cannot help you as well.
In lupus, prevention of problems is a better solution that fighting them after they have become severe!!