I’m not a broken record

I get it. You think I sound like a broken record because my tune never changes. Everytime you ask me how I’m feeling the answer is always “I’m in pain”. Well guess what? I’m not here to annoy you. I’m not answering the same way because I’m lazy. The truth of the matter is… I’m always in pain! For the hundredth time, this does not go away! I will always feel like this on some level. That’s what Rheumatoid Disease is.

I wake up and I’m in pain. I psyche myself up to roll out of bed, and ouch! I lower myself onto the toilet, painfully. It hurts even more to get up off of it. Holding my coffee cup and plate of toast as I walk back to my room makes my hands ache. Messing with the closure on the baby gate I use at my house to keep my cats separated from my roommates dog is much harder when my fingers are puffy and swollen. Sometimes the pain is so exhausting that I can’t even take a  nap, because there is no position that is comfortable. Walking downstairs… Ow! My stress fractures in my feet hurt as I walk on the hardwood floors. I’m hungry. But am I hungry enough to go through the pain of making something and bringing it back to my room? Nope, I’ll skip lunch. Oh yay! I’m so exhausted I fell asleep on accident and got an hour of uninterrupted painless sleep! I’d dance if I weren’t afraid that the act might cause another fracture.

Do you understand yet?

I’m always in pain. And if I say I’m not, I’m lying. Because I don’t want to hear how you think I’ll feel better if only I ate more gluten free meals. Or I’d recover much faster if I ditched drugs altogether and took up Pilates. My pain doesn’t go away. Ever. I hate to be that broken record but I desperately need you to start believing me when I say “Yes, I am still in pain.” “Still”, that means it didn’t stop, it’s ongoing.

And please, PLEASE, stop getting frustrated that I don’t want to see a movie with you (I’ll just fall asleep), or go for a walk (If I’m in pain sitting, I can guarantee you that a jolting walk will not make it better), or just don’t feel like socialising in general, because all of these things are exhausting and painful. Unless you are a medical doctor who knows my case inside and out, and has all my up to date X-Rays, back off. I’m listening to the medical professionals in my life. The ones that have gone to school for 8+ years and know how to keep me ALIVE.

So if you want me to stop sounding like a broken record, then stop acting like I haven’t told you a thousand times that the answer is no. No, I do not want to do something that causes me more pain. No, I do not want to go somewhere that will cause me more pain. I have quite enough already. If I change my mind then you will be the first to know! But for the love of all things pain free… PLEASE LET ME BE.

Furthermore if you would like to help me gain financial independence and get an apartment closer to my doctors and the hospital, as well as pay off my increasing medical bills, please make a donation here:

Christine Lilley’s Life Fund

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