I can really relate to a lot of what you are talking about. I think the biggest problems is, when we start feeling good we think we can start doing everything that "normal" people do. We over do, and then we start having small symptoms, that we choose to ignore because we've been feeling so good, if we just ignore them we know we won't get sick. Haha

one of my tip-offs is always ulcers and fissures on my tongue and in my throat. Have you ever heard of geographic tongue? They say it doesn't hurt, they are wrong! If I avoid spicy, vinegar, tomatoes and citrus it usually gets better (though toothpaste and mouthwash kill me too).

As I sit here writting this, there are tears running slowly down my face. Yes, I experience depression that comes with this. Can it be attributed to the pain, the pain killlers, the randomly occuring sense of helplessness, the doctors who ignore half of what you say or the fact that by the time you can get an appointment with the doctor so many of your symptoms have dissappeared because you have done nothing but lay in bed.
But we don't look sick, so why are laying around?

Just thought i'd gripe back,

mia

i could have written all of the above. Every spring i'm almost certain to take a little 'vacation' to the hospital. Even though it has a great view and roomservice I really would prefer to stay at home. Now I try to remember not to go out when the weather is changing unless I really have to, and then I try to remember to take som extra rest even though it doesn't feels like I need it.

And to the drepression-issue - since july I have been taking anti-depressive medicin and it has been great. It doesn't affect the fatigue - is still awful - but now I feel I have more ressources to use the rest of the time and I can better cope with all the frustrations that lupus can cause in everyday life.

What is "normal?" I don't even know if this word exists! What is it. What does it mean?

Always,
sandy
p.S. I totally here what you are saying! I have fibromyalgia, chronic fatigue syndrome, rsd(crps) and peripheral neuropathy sometimes it is hard to get up in the morning or go to work or even get anything done & most of the time I have to kick myself in the butt and when I get real down I have to tell myself that their is a lot of people out there that are a heck of a lot worse off than I am.

You know I am not entirely sure what normal is.
But you know today is a little better than yesterday...
And tomorrow might be better and it might be worse...
No way of knowing...

I am always reassured when I come here.
Sometimes I cry because its hard to know that so many
people suffer with this. However, let me tell you one thing
for certain, this is not something you can tackle alone.

This forum is my link to understanding. I know some people
around me try to understand. They try to be supportive and
it gets hard for people to understand that you just can't
"get over it". Its hard for people who don't know what this
is like to understand that sometimes this is overwelming.

This isn't something that goes away. Even when its "inactive"
it isn't gone. Its the first fearful dread you have when you
wake up with a little more ache than the day before. It is
the worried look of the people who love you when you say
your are tired. It gets discouraging sometimes when you
think "god... Please not again." even when the flare is over,
you are left with the damage it created.

With any grace you can be a good as you were before the
flare, but this thing is the wave crashing on the shore.
It comes and goes with the inconstant moon.
Sometimes it is predictable and sometimes it crashes on
your shore with a storm. One thing for certain... It will
return.

I'm so glad you have someone who trys to understand, mostly I would say that I have people who ignore the fact that I am sick or dissmiss that I even have an illness. One of the people I work with says she does'n't understand why people take medication or don't just "shake it off". She doesn't even take aspirin for her headaches, they just go away by themselves, so other people should do the same. As if what we have wrong with us could be cured with an aspirin or "shaken off".


Even my family is not very understanding and I have been diagnosed for 11 years. My older sister, when she calls to ask how I am, compares her occasional headache with lupus. Last month when I was in a serious flare my husband was really wonderful. But when I start feeling a little better, and i'm expected to be able to do everything around the house.


So even though my rhuemy told me to stop working 9 years ago, I work 4 days 10-12 hours a day to pay for my health insurance ( my husband and I are both self employed) I take care of the house, cook and clean (even though I have a cleaning woman that comes in once every two weeks for the heavy cleaning) and when i'm feeling up to it, I like to work in the yard. Of course, I never have enough energy to see friends or go out much. Blah blah blah

i have really appreciated coming to this site to see what everyone else has to go through. And the usually upbeat postings and encouragement from others. And only occasionally do I drag myself down into self-pity, get things off my chest and then feel much better.


Thanks

mia

--> mia

it sounds incredible that you can handle all of that!

I'm studying to take my master, but have to do it parttime. I go to classes thursdays and fridays and being out 2 days in a row makes me sleep all saturdays away.
My wonderful mother helps me with eiter cleaning or babysitting 1-2 a week (have a nearly 3-year old boy), and I wouldn't know what to do without her support.
Often my husband has to cook dinner when he comes home because i'm too tired, and I must confess that our boy's toys often are all over.





I think you should be more than proud of yourself and all that you accomplish!



Sulu

Sorry - the last link doesn't work. It keep changing some of the letters in the adress to capital letters. But if you go the thelupussite.Com and into their forumsite, then they have a room called 'family and friends', and there you can find the letter pinned.