Apr 3, 2018

You Don't Have to if You Don't Want To - Chronic Life



My boyfriend said these words as I struggled to stand up to get dressed. It was Easter morning. His side of the family were all gathered in the front of the house. I was surging through the pain scale where a pain level 10 was no longer accurate.

"You don't have to if you don't want to" was a knife to every part of me that was hurting that morning. Overall, that was every part of me except, weirdly, my elbows.

When I went for the HIDA scan was my last day of manageable pain. After that it was a major flare up where it felt as if my flare up was having a flare up. Yesterday my pain level was down to a 7-8 which was relief.

I sat next to my boyfriend and was "I'm no longer at a suicidal level of pain." he goes, "What? Don't make me have to remove all the guns and knives from this house." I explained that it felt as if death would the best pain reliever because that is how high my pain levels were the past week.

It wasn't that I didn't want to do any of the social things for the holidays. I could not. I could barely hold a thin plastic plate and the fork to eat the food. He put small amounts of food on the plate and it physically felt too heavy.


I ate what I could but I struggled to even walk to the bathroom and back. He's been with me for the most of my pain adventure. So, this sentence stung and it's still bouncing around in my head I can't get it to stop.

By the end of Sunday I told him, "Well, I'm not going to be able to go up to my sisters tomorrow." He seemed surprised about all of this as if he's new to this.


Sometimes I forget that those in my life who don't experience pain every day forget that it does remove the fun things I can do. I worked two days last week and did my exercises like I normally do and my body is not happy.

I am on medication for my RA, muscle spasms and to manage my pain levels. I don't have health insurance so I haven't been able to sit down and talk with my RA doctor to switch my medications. 

I feel very stuck in my health situation at the moment. I don't want to not be able to do the things that I enjoy such as family get together's, holiday celebrations and just doing normal every day things. 

In conclusion, just please pick better word choices when you're frustrated with someone in your life that has physical ailments and it can't be helped. 

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