The classic view of summer — for normal, healthy people — is that it is a time for relaxation and fun, with long, easy days of leisure and exciting vacations. When you are chronically ill, though, the lazy days of summer can come with all kinds of extra challenges, but it can bring some unexpected pleasures, too.
Let’s take a look at some common challenges that people with Lyme disease, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), and fibromyalgia may encounter during the warmer months of the year. Plus, let’s look at how to manage chronic illness and summer symptoms and ways to cope.
The Challenges of Chronic Illness and Summer
Challenge 1: School Is Out
For parents who are chronically ill, having kids home from school for almost three months can be absolutely panic-inducing. Healthy parents can fill their summers with trips to the beach, amusement parks, museums, and more, and enjoy active time with their kids outdoors at pools, parks, and playgrounds. What does the chronically ill mom or dad do with those energetic kids all summer? Try these tips:
- Sign your kids up for summer camps in areas that interest them. Forget the traditional summer camp model — now there are arts camps, sports camps, computer camps, and more. Get your kids excited about trying new things or indulging in their favorite activities this summer.
- Plan ahead for quiet time at home. Stock up on books, DVDs, music, and more from your local library. Find quiet activities that you can do with your kids so you can enjoy their company this summer and reduce your chances of increasing your chronic illness symptoms — watch movies together, color or do art projects, play games, or learn something new together, like knitting or vlogging, with YouTube videos.
- Lean on Friends. Most friends and family members of those who are chronically ill really want to help but don’t know what to say or do. Ask a friend with kids the same age as yours to bring your kids along to the pool or playground. Ask if your kids can play at their house. Be honest and upfront about your illness and your limits – most people really do want to help.
Challenge 2: The Heat
Summer means heat in most places, and many of us may experience a chronic illness flareup with high heat and humidity. Do what you can to keep yourself cool and comfortable this summer: drink lots of fluids, dress in cool, breathable fabrics, and stay inside with air-conditioning during the hottest part of the day. If you have access to a pool, lake, ocean, or creek, cool off in the water — this helps orthostatic intolerance (OI), too!
Challenge 3: Hitting the Road
For healthy people, travel means excitement and fun, but for many people with chronic illness, travel means struggles. If you are traveling this summer, these tips can make it easier on you:
- Consider what kind of travel you tolerate best. For me, this means driving rather than flying. Airports are exhausting for me, but I do very well on our family road trips. I take it easy while my husband drives. We listen to audio books or podcasts, I flip through magazines, and we stop for healthy meals. Being in the car keeps me from being on my feet, so car days can actually be very restful for me.
- Stick to your routines. My afternoon nap is sacred, even if we are traveling or with extended family on vacation. In the car, I lean my seat way back (or lie down on the backseat) at naptime and come equipped with pillow, light blanket, earplugs, and eye mask, as well as valerian (a mild herbal sedative similar to chamomile). Same goes for meals – I feel better when I stick to my diet. And even if we are with family, and they are staying up past midnight, I politely say good-night and hit the hay no later than 10 p.m. because I know I will feel better the next day if I stick to my normal sleep routine.
- Make your travel home as much like your home as possible. For us, this means traveling with our little pop-up camper. It’s our home away from home and feels comfortable and familiar to me. If you’re traveling with others, make sure you have your own space, where you can escape and keep things cool, dark and quiet when you need to. Cottages or rental homes are usually better than hotel rooms (and often cheaper), with the comforts of home, plus kitchen facilities. Check vrbo.com and airbnb.com.
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It’s not all about challenges and struggles, though! Here are some of the pleasures of summer that you can indulge in and enjoy:
Ways to Cope and have Fun in the Sun with a Chronic Illness
Coping 1: Keep Cool in a Pool
Or a lake, ocean, or creek! Floating in cool water not only feels nice and keeps you cool, but it is also great for OI, a condition that is an integral symptom of ME/CFS and affects about 75% of those with fibromyalgia and many people with Lyme disease, too. The cool water helps to constrict blood vessels and apply gentle pressure all over your body, helping to circulate blood more effectively to your heart and brain, alleviating many symptoms. So, grab a pool noodle and float away!
Coping 2: Get Out
Although the heat can be a problem for some, summer is prime time for enjoying the outdoors. Avoid the hottest part of the day and get outdoors in the morning or evening. Join your family at a park or the beach (bring a bungee or lounge chair so you can lie down), read a book in the hammock, or even just lie on your deck, enjoy the breeze, and look up at the clouds. I find that being outdoors — even just 20 minutes on my back deck — is rejuvenating and peaceful. Leave the iPad and laptop inside and tune into the birdsong while watching the leaves move in the wind —instant relaxation.
Coping 3: Go With the Flow
Summer can be less stressful than the rest of the year, even when you are chronically ill. If you have kids, there is no schedule to keep, no homework to be done, no after-school activities to arrange. Even if you don’t have kids, everyone has a more laid-back attitude in the summer. Take advantage of this season of relaxation! Carve out time with your partner or a friend to watch a movie together or sit outside in the evening. Indulge in some good books and relax in a hammock or lounge chair outside. I actually find that I feel better on vacation, away from all the daily to-do’s and stresses at home. Stick with the routines that you need, while also allowing yourself that summertime ease.
So, pace yourself, relax, and enjoy this season of summer fun. It doesn’t last long, so make the best of it!
This article was first published on ProHealth.com on July 26, 2016 and was updated on June 9, 2019
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college, also dealing with three tick infections. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) and Book By Book. You can follow Sue on Twitter at @livewithmecfs.