Being A Human Barometer

godhasa plan

To quote a dear friend of mine, who also has lupus: “Mother nature be like:
“the cold weather is coming. Here Lupies wrap yourself in this barbed wire blanket while I make acid course through your bones and veins and don’t even try to blink or move your eyeballs or your hair. That’s right… your hair hurts! Try to imagine one thing that doesn’t hurt. Even your lungs hurt as you try to fill them with air.”
We should be able to hover. Then it wouldn’t hurt to walk! Haha…ugh! ”

I couldn’t have put what the weather changing feels like into any better words than what she did, and it makes perfect sense.   As this latest snow storm moves in, my body is screaming in pain.  Everything hurts.   Spent a good portion of my afternoon in tears, because yes I am in remission, yes I know I was given this disease for a reason.   But I just don’t want to hurt.   I just want to be normal somedays, because being strong all the time fighting this isn’t exactly easy.   I want to be normal, and not broken.

As the barometric pressure changes, the disease reminds me it’s still here.   Acid rolling through my veins, and my skin feeling like its on fire.  When moving or doing anything hurts.  You just want to sleep but you can’t.    Breathing hurts, and it doesn’t help that I got a cold last week.   So basically hacking up my lungs.

This is part of the disease I truly don’t like.   You would think after 9 years of being with the lupus, I would get used to it but I haven’t gotten used to this.   Yes these spells of hell are small and fewer than they used to be, but when they are here, it makes life a living hell for the time being.   Medicine doesn’t help, nothing helps.   So I write.

I write so I can maybe explain to others what it’s like.   I am sure it’s not easy to understand when I say even my hair hurts.   You may ask how can hair hurt??   Words can’t explain that part.

The most frustrating part of all this is I want to be deep into training for my next year’s events.  I should be running everyday and lifting.   When all I currently have had the strength to do today is survive.

I need to continue my training, but today is not that day.   Today I have to cave to the pain that is surrounding me.     The constant reminder that I have a disease that has no cure.

dear lupus

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