Having a Parent Care for Me
Last updated: December 2022
I was 21 years old when my AS started getting bad. It's been almost two years since my condition has worsened. I've found some treatments that keep my condition more stable, so it doesn't get any worse but it hasn't been getting any better either. This means that I need a lot of help doing things. I live with my mom and she helps me a lot.
More often than not, my mom helps me shower. I've got a shower that helps prevent worsening pain and fatigue, but it can still be exhausting to wash my hair and body in one go. My mom usually helps me wash my hair. On days when she can't or she's at work, I wash my hair and body separately (sometimes even on separate days depending on my pain and energy levels). At first, it was really hard for me to ask my mom for help. It made me feel really vulnerable and ashamed to need her to help me. Especially since she works full-time at a physically intensive job and it would make me feel like I am taking time to rest away from her. However, she has been more than willing to help me and has never made me feel bad about it.
Another way my mom helps me is by cooking. I don't have the energy to stand and cook. I've tried getting a little kitchen stool to help with this but it proved ineffective. I would have to keep getting up to get things from all over the kitchen. I've tried gathering all the materials beforehand and then cooking while sitting but the gathering often tires me out. Another aspect of cooking that makes it difficult for me is that it is time sensitive. I need regular breaks of varying length depending on my pain and energy levels and it is hard to coordinate that with recipe times. So my mom does the cooking.
She will also bring me breakfast in bed. This used to make me feel really guilty and ashamed because it is usually considered a luxury or a treat. Because of AS, my morning stiffness is really bad. I basically cannot move much for the first hour and a half after waking. So, I can't get to the kitchen and even if I could, I wouldn't be able to get something to eat. Before my condition worsened, I would grab myself something for breakfast. Or have breakfast with the family. But since my condition has worsened, my mom has been bringing me breakfast in bed everyday. I am so grateful for it because otherwise I would regularly miss breakfast.
My mom will also drive me to doctor's appointments and financially helps me as well. Sometimes it breaks my heart that she came to Canada and worked so hard, hoping that one day her kids would take care of her. But now, even as she gets older, she takes care of me. It's hard not to get wrapped up in thinking like that. But I know it's not my fault that I have chronic pain and my mom knows this too. I wish she didn't have to help me so much so she could take care of herself more but I truly appreciate everything she does for me.
Do you have a parent that helps care for you? What has your experience been like?
Have you ever had to take a leave of absence from work due to your symptoms?
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