5 survival ideas for folks with vasculitis

I have had symptoms of vasculitis and fatigue for the last 14 vacation periods.

In the early years, I was so concerned about disappointing my family and friends that I tried to be the old me and achieve anything. This behavior always led to a series of disasters. I would feel too exhausted to enjoy those special days with family and friends and instead curl up in bed and hide. Hoping no one would know I was missing.

My family noticed and no one seemed to be enjoying their holiday celebrations. I had to break this cycle. I had to stop overdoing it every year.

I’m happy to say I broke the cycle. The following simple tips can help you make your vacation more manageable and less stressful.

Use paper plates and plastic silver

This is my main survival tip. Our illness limits energy. So why should I waste these energy washing plates and utensils? My family doesn’t care if we eat on the fancy dishes or on paper plates from the local warehouse.

The amount of energy I save with disposable tableware means I can stay up late and watch this quirky vacation movie with my family. Having more time for the family makes the decision easy for me.

Don’t forget “half homemade”

Years ago, a cook in the food network named Sandra Lee made her slogan: “Semi-Homemade – fresh ingredients with specially selected, store-bought items.” whisper to me: “Remember half homemade.”

There’s no shame in buying pre-made batter for that vacation pizza or using sushi take away for your seven fish festival. The cooked chicken from your local deli is a great meal when you add a few side dishes.

Due to COVID-19, many restaurants have fantastic take away dinners for the holidays. Maybe it’s time to relax and order for the holidays.

Ask for help

I find this to be the easiest to say, but the hardest to do yourself. I am a micromanager, it is very difficult for me! It’s hard to give up control but it’s so rewarding when I do.

My friends always ask me to help, and I am often too stubborn to accept their help. I never want to be a burden, but the opposite is true, especially on vacation. They want to help and I just have to ask.

I’ve learned to ask them to pick me up while they’re at the grocery store. They feel better when they help me and I am less exhausted because I didn’t have to leave the house.

Sometimes they make special treats and want to share them with my family. I’ve learned to say “yes” and then enjoy homemade tamales, pozole, or even dessert items.

I have to remember that when my friends ask me for help, it doesn’t mean that I am a burden, but that they love me and want to help me.

Focus on a few important things

For vacation must-haves, choose up to three activities. Focus on these and let the others slip away this year.

I no longer worry about decorating my whole house. I choose two rooms that I will be in the most and those are the only rooms that I will decorate. I can no longer make the whole house perfect, but I can make these two rooms joyful.

Cooking is one of my passions, so I use my energy on Christmas Day to prepare meals. I learned to use my slow cooker and organize things days in advance. I don’t want to be so exhausted that I can’t even enjoy the food anymore. Sandra Lee reminds me to use the semi-homemade principles so I don’t have to do everything from scratch.

Remember, your family is happy to have you with them

My family doesn’t care if I curled up on the couch, they just want me with them. My ANCA vasculitis tends to flicker every winter. Last week when I took my nebulizer out of the closet so I could breathe comfortably, I had the urge to scream, “Not again!” I flicker and fail my family.

I need time to get over these negative thoughts and remind myself that my family is happy to have me with them just for one more vacation season.


Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not offer medical advice Diagnosis or treatment. This content is not a substitute for professional medical advice. Diagnosis or treatment. Always seek advice from your doctor or other qualified health care provider if you have any questions about a medical condition. Never ignore professional medical advice or delay your search because of something you read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are designed to encourage discussion of issues related to ANCA vasculitis.

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