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Living with Chronic Pain: The highs and lows
There are a few things that a person NOT living with chronic pain find difficult to comprehend. The Highs and Lows are one. I understand why it’s hard. It’s no different than it being difficult for me to understand what it’s like to live without an arm or having type 1 diabetes.
One of the main things I have encountered that has been a struggle for me is helping people in my life to grasp the highs and lows of chronic pain. I have to tell you, highs and lows f***ing suck. Talk about riding a roller coaster everyday. One day I am fine. I can bend. I can walk. I can type. I can take a shower. Other days I am lucky if I can pick up my arm enough to brush my teeth. Seriously.
I have been in a flare since last October. That’s a pretty big low. I thought for awhile that it was the weather. I don’t know about where you are in the world, but here in IL the weather has been nuts. Temp fluctuation is my kryptonite. My body puts up the surrender flag and tries to force me into hibernation until Mother Nature comes to her senses. It doesn’t matter if it’s hot or cold. If it changes drastically from one day to the next I am toast. So I finally was in a place where I could drag myself to the docs and she looked at some of my symptoms – yup new diagnosis. Psoratic Arthritis along with my fibro, panic & anxiety, PCOS, IBS etc etc. Another diagnosis of something that they could give me meds to help alleviate the pain but no magic cure.
I know a lot of people handle the highs and lows of chronic pain in different ways. Some like people around to help. Some like to talk about what’s going on with them. I don’t. I am a uber independent person. I hate seeing pity on someone’s face. I hate when people tell me they feel bad for me. It makes me feel like I am losing this stupid battle. Literally my husband is the only one I like to talk to about it. He goes through it with me. He’s in the trenches. I don’t have to put makeup on to hide the welts on my face or worry that embarrassing things will present themselves around him. He doesn’t care. The people that have to go through any kind of invisible illness without a partner or someone you can trust…..you deserve a medal. I don’t know how you do it.
Here are a few things I want you to know about living with chronic pain.
- We don’t always want to talk about it. It can be a constant reminder. It starts to define you. When it’s the first thing everybody asks you about every time you see a friend or family member you start to wonder if there is ever going to be a part of your life that isn’t defined by your pain.
- Just because I could do something yesterday does not mean I can do it today. Sometimes I push myself because I know I can. Other days I sit in my chair and work or binge watch Game of Thrones because I know if I push that day I will end up in bed for 4 days. I know my body. I don’t need people telling me I need to take it easy or that I should just “get up and shake it off”.
- I know you worry about me, which is your right, but I don’t always need to hear about it. I don’t need the pressure. It’s hard enough having your body basically dictate your life without having to worry that telling someone you can’t do something that day will set them off on a google search to find you a new “cure”.
- I cannot plan things more than 1 day in advance. Seriously. Even then it’s iffy. I can tentatively plan something. I can hope that I can do something. I can pray to the fibro gods to let me go to that concert or party. It’s not always possible. My body says what I do. It’s why I have stopped making plans with people. It’s too hard to explain over and over that it’s not personal. My body just sucks. The only thing I can kinda plan is work and even then I am begging people for days or weeks extensions. Pain laughs at deadlines.
- Living with chronic pain makes you appreciate your life even more. On those days that I can move, I can think and I feel light, I want to hang out. I want to sit on my patio with a fire going drinking margarita’s and laughing with friends. The days I am moving I feel awesome.
- I personally think people living with chronic pain or any other invisible illness are the funniest people I have ever met. What else can you do but laugh? Sarcasm seems to run deep along with our pain. I know my humor gets me through the toughest days and the inappropriate memes my friend text me can make me forget what is happening for 5 minutes.
I know not everybody is me and my husband is constantly reminding me that I am original, no one else like me in the world, but some of these things seem to be universal among my chronic pain friends. We don’t want pity. We just want understanding on those days or weeks or months that we are low. We know it’s hard to understand. To be our friend or family member though you need to take us on high days or low days. It’s our new normal. I think we are worth it though, don’t you? 🙂