The Struggle as a Lupus Mom
Somedays I lose the battle to push on through. I hate those days. I end up lying around thinking any moment I will revive enough to keep going, but I don’t.
There are some very bad, painful hours spent hating my condition and myself. I hope my kids know I am fighting to be better. I hope they realize how hard I fight — and that I do so mostly for them.
I struggle to make the memories with them that I hope outshine the bad days. Hopefully my kids will remember me cheering them on, the amazing birthday parties I put together no matter what, and all the crazy inventive cakes I create to go with their theme, the tasks I take on to make holidays, parties and everyday moments special for them.
I hope they treasure the small adventures I plan; like random scavenger hunts and picnics in the park followed by ice cream. I want to be known for these things, not my disease.
Recently, I have been in a lot of pain. I have gotten too much sun (this is where a sun protection kit comes in handy) and it shows. I have been doing too much as I try to keep up.
I confess, I have wanted to surrender more than once in the last week. But I didn’t. I desperately want to be remembered by my kids for that strength as well. If they are going to think of lupus, I want to be thought of as a warrior, not a victim.
Lupus Mom Survival Tips
I have found a few tricks in meeting my motherhood expectations:
- Eat healthy. I cook complete meals 95 percent of the time, even if it means using the crockpot. Real food is vital to avoid flares.
- Lupus moms are people too. Though I really do try not to complain too much, typically hiding most of what I endure each day, I do try to keep it real. Mommy gets tired. Sometimes everyone, even I, needs to take a break. I have limits and though they may be caused by lupus, they are a part of life for many people, not just me.
- I must say no sometimes. Simply put, children do not have to participate in every single sport, group or activity that exists. I am not “super mom.” My kids pick their top interests, but moderation is key. I must say no to some activities and commitments and not feel less of a person for doing so.
- Plan for everything. I always create a strategy to help me endure. If it is cold, I utilize chemical hand-warmer packs (found at home improvement stores) tucked into my coat pockets, gloves and boots. For events or parades, I secure a viewing spot near a store, café or my car, so I can escape inside if the pain becomes too severe.
My kids don’t focus on my lupus. They simply have an understanding of what is happening when I can’t do something with them.
I know they are aware it has impacted who I am and how much I can do sometimes. That is our reality. The positive side of this is they have learned compassion from seeing someone struggle and persevere. They have learned to support me and be there for each other too, and that is not such a bad lesson for them to learn.
