What Is in My Lupus Flare Kit: Comfort for a Tough Day
Does anyone know how to get a flare to check the calendar? That would be so much more convenient for me.
The reality in my life is that flares show up no matter what is on my calendar and no matter what goals I had for the day. There are some things that help on tougher days that I have sourced throughout the years.
This is not medical advice. It is one person with chronic illness showing you what is in her kit, in case it helps you build yours.
If you are in a flare right now, I am so sorry. Be gentle with yourself today.
The basics I keep within reach
A big water bottle. Flares and dehydration are not friends, and getting up for water is the last thing I want to do. I also am terrible at drinking water which is why this is top of mind.
Fluids. Can you tell that water and fluids are important? Ha! There are days where it is really hard to drink water. Sometimes its just being nauseous and sometimes its that we have decided to sprinkle in a med that makes water taste like metal. On these days, I follow my doctor’s advice to get fluids however I can which can involve bottled drinks, soups, fruit, etc.
My medications and a little notebook to track symptoms, so foggy-brain me does not have to remember. This can be digital or paper-pencil. I used to track symptoms in an excel sheet but now I tend to track them with ChatGPT or Claude because it is a little easier for me to manage that way and report to doctors.
Easy snacks that take zero effort. Crackers, nuts, whatever needs no prep. If you’re often nauseous in your flares, make your best guess ahead of time about what won’t upset your stomach. I’m not that great at this but it needs to make the list because it’s a really important way to take care of yourself.
A heating pad (or three). I don’t know how to survive without these.
For the achy, exhausted body
The softest sheet I own, the one that lives on my side of the couch. I also love a soft blanket but the reality with life on prednisone is being hot all the time so a sheet works really well for me.
Cozy socks and loose clothes.
An eye mask is just kind of nice to have. A lot of people who have migraines navigate toward these.
Sunglasses that are comfy on your face. Because I have migraines, my OT told me to get sunglasses with different shade levels. I have also found that I prefer sunglasses that have a thinner sides for days where my face is swollen.
For the long day
A flare day is a lot of waiting it out.
Headphones with a calm playlist or a familiar show I do not have to follow closely. I like the ones with noise canceling to focus on work and also for days where a migraine is trying to be the main character.
I like a good, supportive setup if I have to lay down in bed that day. I bought some of these wedges a few years ago and I think they are used almost every day. These are also essential to me if I am trying to manage pain and working at the same time.
A fun movie to watch with the kids is one of my favorite things. Before I dealt with chronic illness, we used to do a lot of outdoor exploring, family walks and things like that. It’s hard to explain to someone who doesn’t have a chronic illness why that is such a rare occurence but the reality is that it comes with consequences for my health. So we have found ways to create wonderful family memories together in other ways. Like a good family movie. And making everything a party.
For my heart, not just my body
Keeping my mind sharp is important to me. I want to keep learning and I also want to stay focused on what matters (Matthew 6:20). The pain, ER visits and today’s health crisis special can wear me down mentally if I am not careful.
I know that if I want to be all I’m meant to be, I need to protect my mind with true things that renew my mind.
Reading scripture. Even if all I do is read one verse today, I know that it is beneficial to me.
Set a timer for social media. Sometimes I’ll set a 10 minute timer for tiktok so that I remember to close the app.
Friends I can text and beg to pray for me.
I wish that a flare kit could erase pain and hardship. It really can’t but it does add little sprinkles of happiness throughout tough days. Weeks. Months. I have to be really intentional about adding sprinkles to my life and I hope that this gives you some inspiration for adding them to your life, too.
