I think it is, once again, time to educate others. Mainly educate those who give ignorant responses after asking how you are.
LUPUS OVER-VIEW (copied from ISSY'S LUPUS INFORMATION CENTER)
Systemic Lupus Erythematosus (SLE, or lupus) is a chronic, incurable disease with four classifications:
* Autoimmune Disease
* Connective Tissue Disease
* Collagen Disease
* Inflammatory Disorder
and all four are accurate.
As the lupus patient knows, this disease can affect virtually any -— and every part of the body: joints, muscles, organs, and entire body systems. SLE involvement ranges from mild to life-threatening; from slight fever, fatigue, and joint pain -— to disorders of the nervous system, blood and blood vessels -— to permanent organ damage, such as kidneys, lungs, heart, eyes, and gastrointestinal system.
In short, lupus is the result of an over-active immune system in which the body produces too many antibodies. These agents, designed to fight invading organisms (infection/virus) turn against the body and attack healthy cells and tissue, causing inflammation and ultimately, irreparable damage. Thus termed "auto-antibodies" meaning "against the self". The effects can be devastating, disabling, and even fatal.
Individuals with mild SLE find their symptoms are easily controlled, allowing them to continue a relatively normal life-style while experieing long periods of remission.
For those of us who suffer severe disease activity and organ involvement, our conditions may be regulated, but symptoms are rarely ever absent.
We live with constant pain, muscle weakness, disabling fatigue, frequent infections, and an endless variety of multi-system complications.
Most lupus patients also experience any number of secondary conditions, such as Asthma, Diabetes, Fibromyalgia, Sjogren's Syndrome, Raynaud's Phenomenon, Thyroid disease, CREST syndrome, and Anemia, to name a few. These conditions have over-lapping symptoms and it is often difficult or even impossible to know which disorder is responsible for the patient's current problems.
From............ Fatigue In Lupus
Around this time of year, when just about everyone is gearing up for the holidays, the severe, debilitating fatigue that plagues most lupies becomes one of our biggest liabilities. Who wants to go shopping, decorate or wrap gifts when you feel like overcooked spaghetti and frequently choose napping over bathing or eating?
The fatigue that most of us feel on a daily basis isn’t your run of the mill “Gee, I should turn in a little early tonight” sort of tired. It’s more of a “Five whole feet to the bathroom? I guess I can hold it a little longer” tired. Getting enough rest isn’t just difficult, it’s impossible. I call it having a “sleep tapeworm” – No matter how much you get, it isn’t going where you need it to!
Add to your daily fatigue: Holiday dinners, school pageants, shopping for gifts, putting up decorations, cooking, cleaning, keeping up with Christmas cards, late-night parties....Geez, I’m exhausted just thinking about it!
Fatigue in lupus isn’t something that we can just ignore, or shake off. It’s a warning from our bodies, telling us that we cannot keep going at this pace, and that we need to recharge ourselves. Being in a constant state of inflammation is draining in the extreme, and sucks up a lot of our energy without us really realizing it. Additionally, we don’t always get the quality rest that we need at night because of various symptoms and problems of lupus -- Restless leg syndrome, chronic joint pain, fever, Raynaud’s, the list goes on and on.
From............. Educating Ourselves and Others
Lupus is a disease that steals from you. It takes your strength, your self-esteem, your optimism and sometimes even your friends. It gives you pain, fatigue, rashes and fuzzy thinking in return.
I am learning to no longer worry about what other people think about my illness, but I can live with it. I try to surround myself with people who take me as I am, believe me and support me. And I laugh every day. Education and laughter. That is a wonderful prescription!
From......Lupus Mayo Clinic article
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Even the distinctive rash that gives the disease its name — "lupus" is the Latin word for "wolf" because doctors once thought the rash resembled a wolf bite — doesn't occur in every case.
Most people with lupus have one thing in common, however, and that's the tendency of the disease to get decidedly worse in episodes called flares and then to improve or even disappear completely for a time.
I could go on and on this morning. Because there are literally thousands (if not millions) of sources on the web designed to educate us about Lupus and other auto immune disorders. Here a a few things that make me feel really bad.
When I have an upper respiratory infection, don't say to me. Everyone gets those. Yup, we Lupies are not a selected group of those who only get respiratory infections. Everyone doesn't feel like this. And, everyone doesn't take weeks or months to get over it.
Don't tell me to go out, it's a beautiful day. The sun is shining. How many times does a person have to explain that for Lupies the sun is pretty much an enemy.
And, especially when someone with Lupus is experiencing horrid, acute pain. Don't start talking about your pains. It just belittles us. That goes for when there are days (weeks or months) that we need to surrender to Lupus. Those days it's usually the paralizing fatigue that has done us in. So, don't say that you are tired too. Lupus patients are not tired. They are paralized by their fatigue. There is a HUGE difference there.
Again, I could go on and on. But the worst one for me is when you ask about how I am doing and then go on to talk about how you have a headache, your period, your tummy hurts. You will get better. We won't. We live like this most of the time.
And, if a day comes that we are feeling somewhat fine. I know, for me, (and I have heard other Lupies say the exact same thing) I go out, I do things, I try to take advantage of these days because they are so far and few inbetween. But, I always end up paying for this. I pay for it big time.
Oh and one more thing. When talking to Lupies who are not working because of being sick. Don't tell them that you would give anything in the world not to have to work. We didn't wake up one day and decide not to go to work ever again. That choice was made for us when our Lupus symptoms got a whole bunch worse. We would give anything not to feel as we do and to be able to go to work again.
Just think twice when you speak.
Posts
