The song “Summertime,” made famous by the incomparable Ella Fitzgerald, starts like this:
“Summertime, and the livin’ is easy…
Fish are jumpin’ and the cotton is high…”
“Summertime, and the livin’ is weezy…
Joints are hurtin’ and the fever is high…”
With the changing of the seasons, comes some welcomed activities: the children are out of school and the weather is warm. There is camping, boating, BBQ’s, summer camps, swimming, birthday parties, and fireworks…just to name a few. But with it, comes some challenging activities: the children are out of school and the weather is warm. There is camping, boating, BBQ’s, summer camps, swimming, birthday parties, and fireworks…just to name a few. Get where I am going with this? Let’s face it, the sun, the activities and the travel, can be enough to make you want to close the shades and hibernate until Fall.
We at Kaleidoscope Fighting Lupus, know the struggle is real. And we want to help you navigate these summer months and turn the “Summertime Blues” into the “Summertime you-do-you’s!”
The Sun / Heat
Statistics show that more than half of all lupus sufferers are sun and/or light sensitive. An even more alarming statistic is that 40-70% of those with lupus will notice an increase in lupus symptoms or the severity of symptoms after exposure to UV (ultraviolet) rays. This can come from both the sun and artificial lighting and can be made even worse by some lupus medications.
For those who have photosensitivity, the warm summer months can be a major dilemma. But, does having photosensitivity mean that you cannot go boating or swimming? Of course not. However, it is important to be smart about your sun exposure.
- The best rule is to avoid midday sun between 10am and 4pm. Even if the day is overcast, those powerful UV rays are not completely filtered out by cloud cover. It is actually possible to get a sunburn on a cloudy day. Stay in the shade if you can during that time frame.
- Wear sunscreen with at least an SPF (Sun Protection Factor) 30 that blocks both UVA and UVB rays. When applying sunscreen, be generous and re-apply often. An 8-ounce bottle of sunscreen is enough for only eight applications to cover your entire body. I mention your entire body, because all skin, not just skin directly exposed to the sun needs to be protected with sunscreen. It may seem like over-kill, but apply sunscreen over your entire skin surface, as clothing does not offer the skin protection that you might think it does.
- Regarding clothing, it helps to cover as much of your skin as possible with long shirts, long pants and wide-brimmed hats. When you are in the sun for long periods of time, consider protecting yourself with clothing that is rated to UPF 50+, as it “allows just 1/50th of the sun’s UV radiation to reach the skin” according to the Skin Cancer Foundation.
- It is also important to be conscious of the amount of time you spend in the sun. There are wearable UV meters that can measure your exposure and apps for smart phones that can will let you know how long you’ve been outside.
- Remember, it is not just the sun. The heat can also cause problems, particularly if you have blood pressure issues or lupus fevers. Stay hydrated and use ice packs to stay cool.
For me, the only time I am not tired during the busy summer months is when I am exhausted. Trying to stay upright with each crashing current of activity can be very difficult. Personally, this issue is one that I struggle with weekly during this time of year. I yearn to be part of the “land of the living” but know I have certain limitations. I’m constantly playing “catch-up” with my illness, trying to recover from the day before while starting something else that will probably drain me of all my spoons before 10:00 AM. Sound familiar?
My motto: Let your “yes” be “yes” and your “no” be “no.” This is another way of saying, commit to things you think you can follow through with, but try to not overcommit. That way you are not overwhelming yourself physically, and might actually enjoy the things you have said yes to.
Here’s some tips:
- Make sure if you are putting your time and effort into something, that it is important to you and those you care about. Don’t drain yourself because you are trying to keep up with other people’s priorities, agendas and expectations. Choose the best “yes.“
- Simplify the activity.
- Be truthful with yourself and others about how you are feeling.
- Stay ahead of the curve and anticipate how you might feel based on prior experiences.
- Instead of focusing on what you don’t feel you can do – for example running a 5K – and focus on what you feel you are up for, like sitting in the shade and passing out water.
Many people enjoy traveling and taking vacations over the summer months. Exploring different places, cultures, foods and sights can be inspiring and life-changing. However, the stress of travel and the physical toll it can take can be extremely difficult for someone suffering from lupus.
So, how do you enjoy your summer travels without causing yourself to go into a lupus flare? What can you do to make traveling less stressful and more enjoyable? Here is are some highlights to help you from our Kaleidoscope Fighting Lupus Travel Guide!
- If you will be traveling for an extended period, you may need to refill your prescriptions ahead of time. Allow a few extra days for this process because most pharmacies need an additional approval from your insurance to do so.
- Regarding packing your medications, make sure to have them securely in a pill box that you are able to keep in a briefcase, purse or carry on. Never put your medications in a checked bag. If your checked luggage gets delayed or lost, you don’t want to be in a major medical bind.
- Write out on a card your in-case-of-an-emergency person, doctor(s) names and phone numbers, allergies, major health concerns and medications you take. Keep it in a briefcase, purse or carry-on bag.
- Ask your doctor if you are ready for a flu shot or need any vaccines before traveling.
- Most people take Airborne or other “immune boosting” supplements before traveling. Remember, you are not “most people” and need to be careful about taking anything that supposedly “rev’s up” your immune system. Check with your doctor before taking anything like that, especially if it contains echinacea.
- It is always best to do pre-board check in. This allows you to select a seat that hopefully has more leg room. Aisle seats are nice, particularly since it gives you the advantage of being able to get up more without feeling like you are inconveniencing the person next to you.
- When you are on the plane, try and get up as much as you can when the seatbelt sign is off. Going to the restroom is a great way to stretch your legs, do a small back bend or twist, some wrist and shoulder circles and stretch your neck.
- Also, for those who suffer from nose sores, ask your doctor if vaseline is safe to use on the flight to prevent your sore from getting irritated from the dry recycled air.
- Ask the flight attendant for extra water. Staying hydrated is important.
- If you are on a long flight, ask your doctor if it is safe to take a mild sleeping pill. It may help you rest before your vacation starts!
The Hotel Room
- Ask the hotel check-in staff for a non-smoking room.
- Ask for a room that is close to the elevator and in a convenient location. It is good to stay at a hotel that meets ADA standards. That means that they have wheelchair accessible rooms, with amenities like shower & toilet hand bars.
- The bed. Oh… the bed. This can make or break your hotel stay. Don’t be a hero, ask for more pillows if you need them. Bring your own pillow if you know that will help you sleep better.
- Bring a gel hot/cold pack and stick it in your mini-fridge. Use it at night on your sore muscles or joints.
- If you suffer from joint pain or immobility, many airports, museums and other public attractions offer wheelchairs and motorized scooters.
- Take this opportunity to relax. Take a taxi, a carriage ride, a rickshaw. Don’t wear yourself out the first or second day!
- You probably know what foods make you feel crummy. It is important to stay away from symptom-trigger foods and most definitely be proactive about avoiding food allergies. If traveling to a different country, learn how to say “shellfish” or “egg” or whatever your allergy may be in that country’s language.
- Ask your doctor if it is safe for you to take probiotics. Those can help with “traveling belly.”
- Ask your doctor about adding motion sickness pills, anti-diarrheal, Benadryl, Tylenol or ibuprofen to your “in case of…” bag of medications.
- Keep all medications together in a clear bag (zip-locks work great) to make things easier for you and to make things easier at any security checkpoints.
In Case of an Emergency
- Before you leave on your trip, research where the closest hospitals are around the location where you will be staying. Be sure to check that they accept your insurance.
- Always wear a medical alert bracelet if you have allergies or any other life-threatening conditions.
- In your phone, create a new contact that begins with ICE. ICE stands for “in case of emergency.” If something were to happen, a first responder would be able to check your phone and contact that person. Examples would be “ICE = TAYLOR” or “ICE = JAMIE.”
Whether it is summertime or any other time, managing other people’s expectations of you can be one of the hardest hurdles to overcome with lupus. People will never understand what is like to live with this illness, because they are not living in your skin. Just like you will never understand why others think and feel the way they do, because you are not living in their skin.
So I am going to give you one word of advice…“stop.” Stop trying to manage other people’s expectations. You cannot control other people’s thoughts, feelings and opinions about your illness. You cannot control other people’s expectations either. The only thing you can control is how you respond to others. If you are open and honest about how you are feeling and what is going on with your lupus, then that is on them, not you. Moreover, if you cannot follow-through with every commitment, and if from time-to-time you have to break plans, those that truly care about you will understand. They might be disappointed, but they will understand.
- Remember, guilty thoughts are not facts. Don’t get weighed down with guilt, you are tired enough already.
- Be honest. Be honest today, tomorrow and the next day. Some people need to be reminded of the truth to debunk their incorrect assumptions about your illness.
- Creating different expectations doesn’t mean you are lowering them. Show grace on both sides; some people don’t know they are being measured to certain standards.
- If your frustrations are getting the better of you with certain people, take some time to direct your energy elsewhere. Try an art class, time with the family, yoga or movie night with friends to reset.
Hopefully, these tips with help carry you through the next few months, and allow you to kick off the blue’s and create some wonderful “Summertime you-do-you’s” memories.
Geis, P. & McLennan, A. (2012) Everyday and high-UPF sun-protective clothing. The Melanoma Letter 30(2). Retrieved from https://www.skincancer.org/publications/the-melanoma-letter/summer-2012-vol-30-no-2/clothing#panel1-1
Kim, A., & Chong, B. F. (2013). Photosensitivity in cutaneous lupus erythematosus. Photodermatology, photoimmunology & photomedicine, 29(1), 4–11. doi:10.1111/phpp.12018
Author: Kelli Roseta (2017)
Updated by the Kaleidoscope Fighting Lupus Team (2019)
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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns