Lupus and the Holidays
The holidays can be a stressful time for many people but especially for those living with a chronic illness like lupus. I find the holidays to be one of the most stressful times for me personally and also a time when my lupus flares become more active.
Dealing with holiday events, cooking, decorating, and planning a holiday with kids always seems to stress me out but even more so since I was diagnosed with lupus a few years ago. Last year, I dealt with a horrible trigeminal neuralgia flare at the holidays and was weeks out from my kidney cancer surgery. Needless to say, I didn’t get a lot of decorating done and just didn’t feel good for most of the holiday season.
Lupus and the Holidays
Since being diagnosed with lupus in 2016, I quickly learned that one of my biggest flare triggers was stress. I also suffer from bad anxiety these days so the stress and anxiety usually work together to create an unfavorable lupus flare for me. It is extremely important to recognize flare triggers so that you can take measures to help reduce your exposure to those specific triggers. Stress is no different.
The holidays are supposed to be a happy time where you are living your life carefree and with a happy heart. I love the holidays, especially Christmas. There is something so magical about sparkling lights and glittery snow falling on cold winter nights. Of course, I prefer to spend my time admiring this beauty from the comfort and warmth of my home LOL. But I am telling you, the holidays are soothing to my soul.
Yet, every recent holiday has sent me into a flare. If you deal with a chronic illness, you may relate to this. The stress of the holidays seem to trigger my lupus to flare often. If we are being honest, there are probably many reasons this happens to me personally. I know that I do not sleep as well or as much as I should when stressed and everything I feel I have to do for the holidays.
It also seems to be the time of the year that I always catch a virus of some sort. Being sick is another flare trigger for me and it seems those flares are the hardest to recover from. When my flares are triggered by a sickness, I not only have to recover from the sickness (and that takes me a lot longer these days!), but I also have to then deal with flares that go on for weeks and sometimes months.
As a lupus warrior, I have realized how important it is to prioritize your time and the activities you agree to participate in. This becomes a lot easier when you begin to take steps to organize your life. I may be a medical hot mess, but I’m kind of a hot mess in general LOL. I had to implement ways to really gain some order in my life now that I have multiple health issues.
Learn to say NO
One of the most important pieces of advice I can give a fellow lupus warrior is to learn to say no. This is still something I find myself struggling with some days. I completely get what its like to not be able to tell those you love and respect that you just can’t help them with what they need or attend an event they are having. I feel as a chronic illness warrior that I try to ‘prove’ myself a lot of the times in dealing with my capabilities.
I am stubborn in that sense, but the truth is, we can’t do everything. No one can. Its not necessarily just a chronic illness warrior thing either, I mean…. we are only human. Sometimes, we HAVE to say no and take time for ourselves.
If you find yourself saying ‘YES’ to everything, especially things you really have no interest in, you may want to re-evaluate for a moment. Ask yourself if this task or event is going to benefit your life or well-being in someway.
If it is not mandatory, ask yourself is it something you would have seeked out yourself, had they not asked you? How are you feeling physically and mentally right now? What does your current task list look like? These are all important things to consider when someone asks you to do something or attend an event.
The holidays can get overwhelming with work, school, doctor appointments, scans, labs, etc. This is the best time of the year to really learn to say no when needed.
Using phrases like:
- “I am sorry, I am already booked for that day or week.”
- “I would love to and appreciate the offer, but I am going to have to pass at this time.”
- “Thanks for considering me but I have been dealing with a lot of health issues lately and am not able to commit to this at this time.”
- A simple “NO” will also suffice. You really don’t owe anyone an explanation to anyone unless you feel it is warranted.
Set reminders on your cell phone calendar
One of my favorite tips is to start using the calendar on your cell phone. Almost every phone has a built in calendar, but I personally prefer to sync it with my Google calendar. With the kids attending remote school right now, I get a lot of notifications and assignment emails that are really important for me. I feel this makes it a lot easier to keep things on one calendar. This is also helpful because I can still access my Google calendar from a device other than my phone if it were needed.
I also find it really helpful to set up reminders when I add an event to my phone calendar. I set up an email reminder for the day before the event and a phone notification reminder a few hours before the event. This ensures that I get a double notice of the event and not forget about it.
With so many things going on during the holidays, having a calendar with set notifications makes life A LOT easier for me as a lupus warrior. Brain fog is a legit issue for me and having all of my events in one place makes it less likely for me to forget about something.
Get a large calendar
I also find it incredibly helpful to have a large wall calendar that coincides with your cell phone calendar. I recommend placing this large calendar in a room that you spend a lot of time in. That way each day you are able to get a visual of the tasks at hand for the week. I find the large calendar really helpful for the rest of my family as well, maybe more so for them than me LOL.
I can tell them about all the plans or due dates we have for something, but they will usually forget as well. Having a large calendar makes it a lot easier for them to understand the plans for the week as well and help remind you of events when they may slip your mind.
Organize your mail
My least favorite part of life these days involves the mail LOL. There is nothing worse than feeling overwhelmed with utility bills or medical bills, especially around the holidays. If you find yourself hating to even check the mail, you may want to consider organizing it.
Why should you spend time organizing your mail when you don’t even want to think about all the due dates piling up? Let’s just say that things don’t seem as scary when you take the time to organize them. Financial issues are something that many of us chronic illness warriors deal with. When you just ignore things, they only pile up and get worse. Not to mention, many places will tack on late fees the longer you wait to deal with a bill.
Start by organizing all of your bills according to their due dates. Once they have been separated, then group them into piles by your closest pay period. This can help you figure out what bills should be paid with what paycheck during the month. This can help you pay your bills on time and save yourself some money and stress.
I also like to write all of my bills on my large calendar. This also helps with a visual que as to when those payments need to be paid. If you do this each day you get a bill, it will feel so much less overwhelming! It can also help you manage a better budget when dealing with an illness like lupus and the holidays.
Organize your medications
If you have not already organized your medications, you probably should consider doing this as soon as possible. I am not sure if you are like me and have ever wondered if you already took your medicine…or are you thinking about last night???? Medication brain fog has happened to me more times than I care to admit. Then I get scared thinking I may take too much if I already took it or I will suffer if I actually didn’t take it.
Getting a pill organizer off of Amazon is probably the easiest and most affordable ways to organize your medications. Having your medication separated by days makes it a lot easier to tell if you took your medicine or not. It also can save you a lot of time on hectic mornings or busy days.
Meal Prep Weekly or Bi-Weekly
One of my biggest resolutions for the New Year is to get better about meal prepping. I love to meal prep but find myself falling off the bandwagon a lot. Yet, I know how much easier life is as a lupus warrior when I do meal prepping. If you have never heard of meal prepping, Meal prepping is preparing meals on a certain day, then portioning it out to create grab-and-go meals for later.
Most of the time, I prepare meals for the coming week when I meal prep. This helps me by having meals on hand and easily accessible in the fridge. Recently, I came across freezer meal preppers. This is where you can make large foil pans of different meals and freeze them. I am excited to start planning some freezer meals in addition to my normal meal prep ideas.
Not only is meal prepping a great idea year-round, but its an amazing idea for dealing with lupus and the holidays as well. If you are in charge of creating a holiday feast, you may want to check out some holiday meal prep ideas that can help you save time and energy this season. Who says you have to prepare everything the day of? Break up your cooking and baking tasks into different days and utilize the help of meal prepping.
Track you lupus symptoms
I am a big advocate for tracking your symptoms when you are a lupus warrior. Tracking your lupus symptoms can help you identify triggers and also help you keep track of symptoms you are experiencing. During the holidays, you may experience many flare triggers.
Keeping a record of these triggers can help you identify them and hopefully prevent them if possible. Tracking flares can also make discussions with your doctor a lot easier and more in-depth. Using a lupus journal or lupus symptom tracker may be beneficial for you if you experience flares during the holidays like I do.
Apply for a lupus HealthWell Foundation Grant
The holidays can be tough on lupus warriors who struggle with finding medical assistance. If you are in need of lupus financial help, you may want to consider checking out the lupus HealthWell Foundation grant. Every December, they open the grant to applications for the lupus fund. For many years, they offered a medication co-pay assistance program to help lupus patients cover many medications.
As of 2020, they have also opened a grant to help pay for insurance premiums for lupus warriors. The great thing about this grant is the fact the income guidelines are A LOT higher than most programs available. You may be surprised to find out you may be eligible for this grant. It is definitely worth checking into if you are a lupus patient needing some financial help for the new year.
While the holidays are a beautiful and magical time of the year, they can sometimes be difficult for lupus warriors. If you can identify triggers for your lupus flares, you may be able to help manage your symptoms better. Being proactive during the holiday season can help when dealing with a chronic illness. Learning to say no, organizing your life, and getting financial help are all ways you can stay ahead of lupus and the holidays.
Most importantly, take a rest day if needed. Self-care is extremely important as a lupus warrior and we all need a break at some point. I hope some of these tips help you to have the best holiday season. I hope you and your family have a wonderful holiday season and stay safe and healthy!