First, please take a moment to read the “Spoon Theory”
It is an amazing explanation of lupus. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

This is a pretty personal blog entry. Those of you who know me, may not be aware of all the struggles someone diagnosed with lupus deals with. Some of you may have even uttered the statements listed below to me…maybe you were not aware of how hurtful they are-this is just an explanation.

Some of you know that I am a “go-getter” and “to the hilt” organized. To many, these traits do not go with someone you think has lupus.

People with a diagnosis of an auto-immune disease go thru many different stages before they get to acceptance. Most of this process includes a “looking at self” aspect. We all get thru this process at our speed, and I might add, with our own attitudes.

Most of the looking at self process is looking at where your priorities are and eliminating or changing what isnt a priority. This priority list changes depending on energy levels….And there is no doing “more” because if you try to do too much, you will pay for it days on end.

Since people who do not have lupus cannot begin to fathom how limiting it CAN be, we cannot blame them for not knowing what they are saying hurts.

So here are some statements Ive heard and a couple comments

-What do you mean, you are tired? You havent done anything today.
For those with lupus/FM, we DO get tired, just doing nothing. You can wake up and just HURT. Every bone, every joint, every muscle. Its just the way it is. We HAVE to accept this.

-You just had a cold, why are you still sick THREE WEEKS later?
Our bodies just have a way of destroying anything…even stuff that makes us better. So while your body is fighting your cold-helping YOU get better, my bodys immune system attacks even the good cells-keeping ME sick.

-What do you mean your cold, injury caused a flare?
See above explanation.

-What in the world is fibromyalgia? Ive NEVER heard of that!
Simple explanation- aches and pains everywhere, anywhere, at any time for any length of time. Your body just HURTS.

-What do you mean you have insomnia? I thought you said you were tired!
Well, I cant say that I understand this myself…all I know is that there are times when I lay in bed all night long, tossing and turning – never have slept before the alarm goes off.

-What? Youre not going to come to _______ to see us?
Sorry guys. If I cant come, its because the total drive time involved takes a toll on my energy levels and soreness. Did you really want me to come and hurt all night – wanting to lay down?

-I know someone who has lupus and they are hardly ever sick. Whats wrong with you?
Everyone who has lupus is different. The disease may manifest itself as a rash, arthritic pain, cramping, UV sensitivity… More serious cases of lupus even include organ failure-mostly kidneys. Also note, not all people with lupus have symptoms during periods of remission.

Im sure I could list more….but I think you get the drift.

I was diagnosed after the birth of my son (now 13) and an experience with a pulmonary embolism that Id rather forget (rather, I have no recollection of). Ive had a mix of flares and remissions during that time, recently going 6 years almost symptom free.

I have learned that I do not have to make excuses for how I feel. I choose to educate those who are either misinformed or just dont understand. Even after 13 years, there are things I do not fully know the WHY or HOW.

And yes, there are days when I feel up to doing something -like cleaning – its just more enjoyable to surf the internet or jam out with Guitar Hero!

Cant be all bad because, According to GH, I rock!
And…..Im still the GH queen in this house…but I gotta practice because Matts catching up!

For those of you still waiting on my Lost theory – Part One will be posted Monday, Part Two Tuesday, Part Three Saturday. I promise you will want to go re watch it from the beginning to see if Im spot-on!

Advertisements