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Don't Be a Pain in My AS!

Last updated: November 2022

When you become ill it seems like everyone around you all of a sudden becomes a "doctor." They want to tell you what you should be eating, how you should be dressing, how to wear your makeup, how you should act, how you should be resting all day every day, how you shouldn't party or drink because "you will cause more pain," what medications you shouldn't and should take, and the list goes on.

I understand that some people have good intentions and truly care about your well-being, and they really don't know what else to say to you. However, what they don't understand is that all we really need is for them to be normal with us, because all we really want is to feel normal again.

Some people basically want you to stop living life

If you vent about your pain and you went out the night before, you will be judged because you went out and enjoyed time with friends or family or your partner. What they don't understand is that no matter what we do, the pain is always there.

Of course, yes, the pain increases if we overwork our bodies, that's why it's so important to take breaks or use your mobility aids when you are out and know there will be lots of walking or standing in lines. I myself have to rent a wheelchair when I go to a theme park. I use the motor carts when I go shopping and I always have my cane with me in case I need it. I don't use my cane often because it causes too much pain in my hands and wrist, but if I really need it I will use it with my arthritis gloves on.

When I go out I make sure that I prepare my body

I take my meds, I ice and heat, and I take a gel pack in an isolation bag with me so when pain increases I can ice the affected area. For some people, drinking alcohol does cause a flare, but you don't have to drink to have a good time.

When you go out to party, drinking water, or a virgin drink will do you just fine so don't feel pressured to drink if it causes you to flare. Some ways to not feel left out of drinking are: You can ask the bartender for a virgin drink, and if your friends are taking shots, you can ask for a water shot! You determine the fun you have when you go out, not alcohol.

When you're on the dance floor and you get tired, sit for a few, and dance from your chair or booth if you don't want to feel left out. Most of my friends also have chronic conditions, so they understand when I need to sit. I'm not saying go get a bunch of friends with chronic illness, but having people who can relate makes it easier for you to not feel so left out.

Some people don't understand

We expect our friends and family with or without chronic illness to be understanding, but some are not. Some make you feel bad when you can't do what they can do and that's when you tell them: "Don't be a pain in my AS!" Only we know what our bodies can and cannot handle. I mean we are the ones living with this illness! Some for years, others are newly diagnosed, however long you have been living with this horrible disease don't let anyone ever dictate how you live your life. And never feel ashamed because you can't do what others do, because guess what? They can't do what you do!

Daily fights with excruciating pain and fatigue--it takes a special kind of person to battle this condition, and you my friends are all special in your own unique way!

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