People with chronic illness, particularly fibro are often sensitive to temperature and temperature changes. Heat can aggravate pain and fatigue and cause other heat-related illnesses like heat stroke and heat exhaustion as we talked about last week. This week, I’d like to share some tips for beating the heat of the summer for chronic illness. Here’s mine. Feel free to comment and share yours!
1.Stay hydrated and avoid alcohol and caffeine Caffeine and alcohol can get you dehydrated more quickly which is a bigger problem when you add heat to the mix. Stay hydrated by carrying a water bottle or thermos with you in the car and even from room to room in your home. The AC can cool things off but it is also drying the air so hydration is key.
2. Avoid direct sunlight for too long As I pointed out last week, heat issues kind of sneak up on you. Make sure to limit your time in direct sun or heat to avoid the heat illnesses or fatigue creeping up on you.
3. Eat smaller meals Eating smaller meals allows you to avoid getting hungry which can contribute to fatigue. It also allows you to eat more frequently. This keeps you from eating too much at one time which can bring on a food coma. 😀
4. Luke warm showers instead of hot showers Taking luke warm showers instead of using hot water helps keep you from those huge temperature swings. I’ve had to adjust to those. I love taking HOT showers. The kind that my husband says burns his skin! ROFL The heat can help my muscles but it also contributes to my fatigue after a shower.
5. Wear layers especially when going in and out of ac, lightweight light-colored clothing If you’re like me, you can go from freezing to burning up in two seconds flat. I always wear layers to help keep myself regulated. Sometimes I even get both at the same time. I call that FROT. Freezing Hot!
6. Keep medication cool. Some meds are sensitive to the heat and some make you sensitive to heat. (Lupus) It’s best to keep meds out of direct sunlight and away from humidity. Many people keep them in their bathrooms, but that room can get quite muggy from showers. I keep mine in the pantry in the kitchen.
7. Know your limits don’t do too much I’ve said this many times. I have no idea what my limits are and they change from day to day and week to week. But this is something many doctors and articles tell you so I’m including it here. Do the best you can with it. I’ve almost given up trying to figure my body out in this area. LOL
8. Know the signs of dehydration:
Loss of appetite
Dry skin (you no longer sweat)
Decreased urine volume or abnormally dark urine
Unexplained tiredness
Irritability
Rapid breathing
Dizziness
Come on back next week when I’ll be talking about summer travel tips for chronic illness folks!
So, I was on Facebook this morning when someone posted one of these type sayings in the spirit of If You Give a Mouse a Cookie. It occurred to me that there’s a chronic illness version of that and here it is…
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If you give a chronic illness person a bit of energy, she’s going to want to clean the house. When she begins to clean the house, she will remember that she’s probably better off using her energy to cook some meals ahead of time.
When she begins to cook, she will realize that it’s time she ate something. When she gets to the refrigerator, she will notice she needs to go food shopping.
When she gets back from the store, she’ll realize that she left the stove on and the pot is burned. When she goes to throw the pot into the sink to cool, she’ll have remembered she never ate lunch.
When she returns to the refrigerator, she will remember that she left the groceries in the car. When she finishes putting away the groceries, she’ll notice that the house is even messier than it was this morning.
When she thinks about cleaning the house, her body reminds her that she is out of energy.
And this is why she is found sitting on the floor near the couch in a house that looks like it was ransacked with the ice cream melting on the ground beef that is running down the kitchen counter.
Summer can be a difficult time for those with chronic illnesses. I found an article that shares some Summer Health Risks for Chronic Illness. Some of the things they talk about that will be aggravated by the heat of the summer are migraines, MS, autoimmune conditions, Rosacea, and respiratory illness.
When I was a teen in high school, I used to grab a piece of floor in my bedroom that got the afternoon sun and took an hour nap after walking home from school. I felt better afterward which may have been from the vitamin D in the sunlight. However, too much sun exposure or too much heat can have a negative affect on your fatigue.
Those of us with Fibro or other chronic issues that cause fatigue often don’t realize how much we may be affected by the heat/sun during the summer. I lived in Phoenix for five and a half years so I know first hand how the sun and extreme heat can cause my fatigue to worsen. I had no idea why few ever attended outdoor activities for their kids in Phoenix until I was sitting outside the soccer field (no real shade) and felt a wave of heat stroke come over me. I had heat stroke or heat exhaustion a few times each of the first three summers I was there in ARIDzona!
However, even those in states where it doesn’t get to 120 degrees probably need to be careful of the heat during the summer months. Both heat and humidity can take its toll on those of us with already decreased energy levels.
I can tell you that the affects of heat can sneak up on you. Heat stroke and heat exhaustion came over me suddenly–not slowly. I never knew it was an issue until it suddenly kicked into high gear. So my cautionary tale is one of precaution. Make sure you limit your time in the sun, heat, and humidity.
I’ll be back next week with some ideas on how to do just that.
So far this month, I’ve shared my experience with exercise, weight, and, chronic illness as well as my discoveries about protein and fatigue. (By the way, I asked my doctor and she said that it makes sense that someone with fatigue could use more than the RDA of 40 grams of protein especially when that person has Essential Tremors which uses more energy, though it’s never been studied. She said you could do as much as 70 or more depending upon your other healthissues). This week, I’d like to share some of the foods they say to cut out or add that might make a difference for those with chronic illness.
I realize that everyone is unique and that each combination of diagnoses and conditions will contribute to what might be good or bad for you. I’m just going to throw out some articles I found that might help some of you out there to find what might work for you.
The first article I found was from WebMD which listed 10 Amazing Disease Fighting Foods which included berries, dairy, fatty fish, dark leafy greens, whole grains, sweet potatoes, tomatoes, beans and legumes, nuts, and eggs.
Anti-inflammatory foods 1. Fresh produce. “For anti-inflammation, you want to think red,” she explains. Food like berries, cherries, red cabbage, red onion and red apples contain quercetin, a flavonoid (plant pigment) that fights inflammation.
2. Herbs and spices. Consider adding turmeric (a yellow Indian spice), thyme, oregano, basil and parsley to your dishes to boost flavor and inflammation-fighting properties. “If you use a lot of herbs and spices, you’ll be cutting down on the fats and oils in your food,” says Komar. “You’ll also be getting a lot of chlorophyll and other anti-inflammatory properties.”
3. Healthy fat. Extra virgin olive oil is a healthy fat with an anti-inflammatory agent. When cooking with fat, avoid soybean and partially hydrogenated oils, as well as butter whenever possible.
4. Fish. Eat fish rich in omega-three fatty acids, such as salmon, tuna, sardines, mackerel and herring, on a regular basis.
Eat eight to nine servings of fruits and vegetables per day: Eating a variety of colorful fruits and vegetables can ensure the greatest range of nutrients. Foods that are particularly rich in nutrients include broccoli and berries.
Choose whole grains: Whole-grain foods include barley, buckwheat, oats, quinoa, brown rice, rye, wheat, and spelt. These foods provide vitamins, protein, and fiber.
Choose healthful oils: Olive oil is a good choice.
Incorporate herbs and spices: Many herbs and spices contain antioxidants, which may help reduce inflammation. Turmeric, bay leaves, cinnamon, and many others can offer benefits.
And lists foods to avoid as meats, dairy, additives, and gluten.
What foods have you added or avoided that has actually helped your pain or fatigue?
Don’t forget to come back next week because I have a special treat for you this month! I have a special guest post with a special message for you!
2020 has been a blur, hasn’t it? So much has happened and I can hardly believe it’s all been packed into five months! While our nation and the world is in all kinds of chaos, there are certain things that have not changed. Chronic illness stops for nothing. So, I will continue to support you by bringing you some new insights and information as I find them.
This month’s topic has been near and dear to my heart for over twenty years as I’ve struggled with my weight, diets, and exercise that all promised great results but delivered bupkis.
I’ve been steadily gaining weight since I had my son almost 21 years ago and I began my perimenopause journey. However, a little more than three years ago, I had a total hysterectomy and that’s when my body decided to make up for in width what I lacked in hight! Since I was mostly a healthy eater and had no issues with cravings, stress eating, or portion control, I was at a loss to find something that actually worked for me.
As I mentioned before, limiting calories to 1200/day had not worked AT ALL for me because left to my own devices, I was only eating 900 – 1000 calories/day. So, my attention next turned to exercise. BUT…there’s a HUGE problem with exercise for those of us with chronic illness. Here’s an excerpt from an article I found online:
“It’s basic physiology—when you feel sluggish, unmotivated and fatigued, getting up and doing some exercise causes changes in your body that boost your energy. Exercise also releases endorphins in the brain, and endorphins are great pain killers. So when people say those of us with Fibromyalgia and chronic fatigue syndrome would feel better if we got “more exercise,” there’s something to it, right? Actually, no. In normal, healthy people, yes—exercise creates energy. Problem is, we’re not normal and healthy.”
And what are these endorphins people speak of? I’m pretty sure they don’t have those on my planet. My husband always told me that he feels GREAT after exercising and taking a shower. I never had enough energy after exercise TO take a shower. The best I felt after a “work out” was slightly more tired than you normally feel when you have the flu!
In my experience, even as a teen in high school (after eight months of doing two back to back 30-minute aerobics tv shows), I couldn’t get off the floor to take a shower and go to school. As I got older, it only got worse. In recent years, I have never gotten past two or three weeks of “gentle walking” on the treadmill without having a flare and giving up for a month…or several.
The dangers of exercise for chronic illness sufferers are flares and injury. Doing too much can cause a flare in your pain and/or fatigue and that flare can last anywhere from a few hours to a few weeks or longer for some. Injury is a concern even for those who don’t have a chronic illness but don’t exercise regularly. After walking on the treadmill a while back for as much as three weeks, I injured my foot requiring six surgical procedures!
The most difficult part of this for me is knowing when is too much. I can have no problem for weeks and suddenly, in a matter of a few seconds, I’m done! I’m exhausted. No warning. Nothing telling me it was coming. Anyone have this? And further, when something is too much, I have no idea how long my recovery from a flare will be. Sometimes it’s a few hours. Sometimes it’s seven weeks.
I have no way of knowing, but some people can feel it coming on. Some can tell when they are going to need to stop and some know that doing X will likely cause Y amount of time to recover. Some know when it’s too much but have no idea of how long recovery might take. I have no indication of either.
If you can start slow, build slowly, and you can find what works for you, there are many benefits of exercise for chronic illness. For some, exercise is a way of feeling healthier or building strength or even easing some of their pain symptoms. For some, the goal was weight loss.
I was never able to exercise enough to contribute to any weight loss. I was way too fatigued to do enough of it to yield any weight loss results. After gaining 50% of my weight in FAT, I thought I’d never lose it.
Everyone gave me lots of ideas, but nothing worked for me. I heard about the Keto Diet but found it too complicated even for those who lost weight with it to explain it to me in four sentences or less. I had all but given up when I found a health coach that was able to tailor a plan just for me and tweak it along the way when things went sideways. And that’s how things work on my planet so that happened a LOT!
I think most of the issues we, as chronic illness folk, have with traditional programs of any kind are that we aren’t your typical, average person. We may not even be typical for whatever diagnoses we have! I know I’m not!
Just like I was blessed to find a doctor who not only understands my chronic illnesses but who is willing to listen and tweak my treatment, what made all the difference for me was my health coach. I found one that knows her stuff and also is open to listening to the issues I was having that weren’t normal. If someone had told me what the average person needs to do to lose weight and left me on my own to figure it out, I’d have quit after my second week!!
After losing 15 pounds, I finally began to notice an improvement in my fatigue, sleep, and a decrease in the number and severity of my flares. Fatigue is still the BIGGEST issue I deal with even more so than the pain. It’s no where near gone, but there is a noticeable improvement!
Each one of us has to find what works for our individual needs. My coach, Mary, has been such a blessing! At the time I’m writing this, I’ve lost 15 lbs and 17 inches so far. If you’ve had a tough time losing, check her out. She’ll talk to you about how she can help with no obligation whatsoever! If you do, tell her JoJo says hello!
What diet, eating program, or exercise have you found works for you?
Make sure you check back next week when I’ll be sharing some insights I found about food that has proven very interesting to combat fatigue!
No series on COVID19 and Chronic Illness would be complete without pointing out the differences between what most will experience as social distancing and what we, who struggle with chronic conditions, deal with.
You’re not sick: Many of you who are dealing with limiting your social interactions and confining yourselves to your homes don’t also have to deal with having chronic pain or fatigue or a host of other issues that go along with our everyday life dealing with illness. You’re free to spend your time cleaning, reorganizing, cooking, exercising, or a myriad of other activities that we find exhausting.
Many of us find that we are doing even more activity as our children are home from school and our spouses are home full time. This means more laundry, more cooking, more dishes, more cleaning, and thus, more pain and more fatigue than we usually deal with.
You’re not sentenced to life: Your incarceration is short term. However long you think endless social distancing means, it’s likely much shorter than we who have been on the inside already. In the past few yrs, I’ve been home alone most of the time until my husband came home from work (which was often pretty late) or my son had been home on spring or summer break (which he had to spend some amount of time attending to his own life) or when we went to church or out to dinner on the weekend.
Most of us with chronic issues have spent months or years at a time alone or without the ability to leave our homes. As so many on social media had been pointing out Anne Frank and her family’s isolation, we who have chronic illness, have experienced this to a great degree first hand.
Others will understand: As you face time sequestered in your homes, many others who have to do the same understand what that means for you. You have friends and family who “get it.” We don’t. Most of our friends and family have no idea what it means to be alone in our homes for years. Or what it means to be fatigued or in pain on a chronic level. You can commiserate with others. We don’t usually have that luxury unless we come together with other fellow chronic illness sufferers online.
You’ll get back to normal one day: One day soon, Coronavirus will be handled and life will go on about as it has been prior for most people. However, the very nature of chronic illness is the chronic part. It means there is no cure at present. There is no parole for good behavior. Our sentence will not be commuted and we will likely only get worse with age.
A small percentage of people with one chronic issue will only have one chronic issue in their lives, but most of us have been collecting diagnoses like some collect stamps. I, myself, have several chronic illnesses and conditions to contend with.
You may have economic difficulties that last well beyond the time when we will no longer be confined to our homes, but there will be those that understand and will make allowances. There already have been. Many companies are not requiring payments for a while. Some landlords have told businesses to pay their employees before the rent. Most universities are being lenient with grading. Most employers will understand and not hold it against you if you were unemployed for a while. The government is sending out checks for relief.
Most employers and most people don’t understand what it means to have been isolated for years due to chronic illness. Most of us with chronic illness have a large debt due to medical bills. That’s not something widely understood.
You’ll get back to normal one day. We will still be here.
I was thinking a lot about how those of us with chronic illnesses have had to socially distance ourselves for one reason or another over the course of time. It got me thinking. In some ways, we are more prepared for the social distancing of COVID19. However, in other ways, we are already stretched thin and the added difficulties arising from Coronavirus could overwhelm us and put us over our tipping point.
So I asked myself, “Are we better prepared for social distancing than our non-chronically ill neighbors or are we isolated enough and overwhelmed as it is?” I’m still not sure, but here are some of the things that weighed in:
How We are More Prepared:
Those of us dealing with chronic illness may be more prepared for being socially distant because we are used to it.
We have all kinds of different limitations (health/mobility/solitude),
We are used to relying upon other people
used to relying upon God
How we are already overwhelmed:
Now those once a week activities that helped keep us sane are gone.
The people we used to rely upon are no longer able to visit
Now others are also now relying upon us more such as our children and spouses since they are home all day.
Our limitations may be the thing that broke the camel’s back to overwhelmed.
Now with so much out of our control, we feel like too much is out of our control: overwhelmed.
What about you? Do you feel more or less able to handle the COVID19 social distancing?
Many of us with chronic illness have been socially distancing ourselves for quite a while now. We have been doing it because we are either too tired or in too much pain to make it to social events. Speaking for myself, I have often been too tired to go visit people and my Essential Tremors make it difficult for me to drive so I have been mostly alone in the house for at least a few years.
Those of us with chronic illness often feel we have nothing to offer others. However, what we know about coping with social distancing could fill a blog post and so here it is!
I’ve put together a list for you and I asked my Life Beyond Surviving group members to weigh in on this and here’s what they said to those who are struggling with social distancing during COVID19:
Since I cannot go out much, I have found social media invaluable for keeping in touch and connecting with others. Reach out to others online who have similar interests and discuss them, share your ideas and your creations with others. I do this by sharing my humorous JoJoisms on social media and in my groups.
“To keep in contact with family and friends, we’ve been using a lot of FaceTime, Google Duo, and the video option on Facebook messenger.” -Amanda O.
A great way to keep in touch with family and friends is by phone. Now that everyone is at home and fewer are working (or are working from home), you can reach out to family on the phone. Want to see their faces? Do Zoom calls with family or friends!
“Develop hobbies (Reading, painting, crochet, knitting, needlework, coloring, dancing freestyle to music), learn to enjoy silent times of peace and quiet reflection, enjoy music, movies, have a routine, do certain things on set days still not just through each day, reach out, do some sort of physical activity if it’s stretching, walking or exercises, Livestream tv and movies, FaceTime or video chat, Facebook lives, declutter your house, cook and freeze meals ahead, read stories to kids in person or record and send to them.” -Angela W.
Watch some educational things on YouTube or some documentaries on TV. Get closer to family now that you are spending more time with them (if you are) and why not do Movie Nights with popcorn like a theater!
“Don’t sit for more than about 45mins, set a timer if you need to and get up and move around, get a glass of water. Set out healthy snacks for the day, plan your meals, add in some treats!” – Amy W.
Have small children? Check out some fun crafts or games online to do at home! Have games in the backyard. Do puzzles. Spend quality time!
“Gargle with warm salt water, especially after being out and up your vitamin c. Make sure you get out and exercise.…cleaning, reading. I talk to my daughters through the Facebook chats. Listen to my Spotify music list.” – Cynthia P.
One thing I love to do is to minister to others. Why not help someone. For example, text an inspirational message each day to someone who is needing some joy. Post the beauty of God’s world or scripture on social media or text or share it over the phone.
“Reading, writing snail mail, and doing virtual field trips. I am traveling via shows, virtual tours of various places I had dreamed of going to. My husband and I are listening to various music via Concerts on TV, on YouTube, Instagram. There are live streams of symphonies, ballet companies, dance shows, etc… Our son clued me in, that you can find some Broadway Shows on various platforms! I felt isolated but truly, the world is available to me! I feel blessed.” – Becky P.
I hope that helps you all out there! Please share this post and leave a comment on the blog with any ideas you have!
This week we’re wrapping up my series based on the Six Things God Uses to Encourage in one of the sermons by Charles Stanley. We’ve talked about God’s Word, Music and Fellowship, Thankfulness, and Humor. This week, I’d like to talk about the last one, Prayer.
Prayer isn’t just a way to communicate with the Father, but it can be a way in which He encourages us. This is especially important when we are struggling in trial–particularly a trial that is chronic.
Not only can we pray to the Creator when we are in need, but we can pray to commune with the Lord to hear His voice that will guide us and encourage us not to give up and that He allows the things He does for a higher purpose. Knowing this can help us to accept things that we cannot change, keep strong for things we can change, and encourage us along the way no matter what is going on because our home is not of this earth but in Heaven.
It may be hard to feel the Lord near to you when you’re in the midst of a trial, but the more you look around and see all He has put here for you to encourage you, the more you will feel Him near and that is a HUGE encouragement!
For this reason, I encourage the Life Beyond Surviving Facebook group to share their prayer requests each Sunday (and at any time a member has a need). Sunday is already a day of rest and to commune with the Lord so Sundays are a day we pray for each other on the group.
If you are on Facebook and would like to join us, we’d love to fellowship and pray with you. I pray you have found some encouragement from this series.
We’ve been exploring six ways in which the Lord encourages those of us with chronic illness/conditions. We’ve discussed the Word of God, Music, Fellowship, and Thankfulness. This week, I’d like to talk about Humor!
I have always loved humor. It’s become part of my personality. I even enjoy the dreaded pun and I adore making others laugh. What I discovered is that the more difficulties I face, the more important humor is to me. It has a way of disarming the anxiety and adding lightheartedness to an otherwise dreary day of fatigue and pain. Humor has gotten me through a ton of difficulties as I’ve found that God usually hides a little humor inside the struggle.
“A cheerful heart is a good medicine.”—Proverbs 17:22
I didn’t realize it until I started looking, but there is a lot of humor in the Bible. God invented humor as a release, a way of teaching, and a way of coping with the difficult things in our lives. I read a great article about how God uses humor in His Word.
Here’s are a couple of passages from that article:
“But I think Hebrews 11:12 is the funniest verse in the Bible: ‘Therefore there was born even of [Abraham], and him as good as dead at that, as many descendants as the stars in heaven …’ (emphasis mine, NASB).”
“Of course God’s humor is never cruel the way humans twist it to be at times. In fact, God is entirely pure and untainted, thus so is his humor. Such a God inspired the author of Proverbs to write, “A happy heart makes the face cheerful” (15:13), or seen from the opposite point of view in verse 30, “A cheerful look brings joy to the heart.” Proverbs 16:24 says, “Pleasant words are a honeycomb, sweet to the soul and healing to the bones.” Aren’t you glad?”
