I know many of us have a hard time maintaining the energy needed to do day to day things. It seems an insurmountable task at times to think about travel. However, if you can, it’s often a great idea for lifting spirits.
I actually found a great article on the topic and just thought I’d leave that here for you to peruse. It emphasizes talking to your doctor and planning! Planning is a HUGE part of chronic illness life, but just know that as they saying goes…the best laid plans of mice and folks with chronic illness… You may need to make changes as you go.
My only advice to you is to share how I felt when traveling by plane. Plane travel is very difficult with chronic illness. All that waiting in line while standing is very hard. Lugging around luggage is much easier if yours has wheels. Also bring snacks because the food at airports is expensive and you’ll need to wait in another long line to get it.
Long car rides can be difficult too as you’ll be sitting in a cramped environment for a long time and that can wreak havoc on your muscles. I’d suggest stopping often and stretching your legs every few hours if you can. Even an hour car ride for me is a bit hard at times so do what you feel you can.
I can’t really add much more to it other than to say that every individual with chronic illness will be different and may have different needs and limitations at different times.
What are your best travel tips?
Check back next week when I finish the series with summer activity ideas for those of us with chronic illness!
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
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…
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.
I have a lot to say about chronic illness because I’ve had it ever since I was a kid and I have had several different diagnoses in my 57 years on this planet. However, I find some of my fellow chronic illness survivors to be so inspiring and their stories share such important perspective and wisdom that I thought I’d share some of them here from time to time.
Tanya is a social media friend. I met her on Facebook and she is also a writer, blogger who shares some wonderful insights about chronic illness and Fibro in particular. She had a post on her blog that she has consented to share with us here.
People have asked me how can I smile while dealing with a lot of health issues. It isn’t always easy yet experiencing twenty- one years of chronic, intense pain, I have learned to use tools that are available to me. I have been in a chronic pain management program, been through tons of Counseling, and researched a lot about the pains and disease such as Fibromyalgia and Chronic Pain Syndrome that I deal with. I have learned what medications work or don’t work for me due to trial and error. I have a huge list of meds that I have a bad reaction to.
Another thing I do is when I’m in intense pain, I tend to keep to myself and try to rest and take care of me. I fought doing that for years but when the pain and symptoms became worse, I realized that I need to take care of me, speak up, and be an advocate for me because no one else will do it.
There are days that I’m not smiling but I try to keep my spirit and emotions up by watching funny videos on U-tube, spending time with friends in person, on the phone, or even on Facebook and finding humor in my pain or brain fog I get a lot. Yet the most important thing I have is my faith in God in whom I lean on for daily strength. Without Him, I would be way worse off then I am now. I can’t say it’s been easy or the road I’ve traveled was great. There were times I was mad at God for not healing me but I’ve learned that He is using all this pain I go through so I can identify and encourage others who are dealing with major health issues, as well. So for that, I am grateful.
NOTE: If you are a Chronic Illness Survivor who’d like to share your story of how you got diagnosed, what you learned, what you think people should know about chronic illness, or something else you’d like to share, contact me! I’d like to include one guest post per month if that is possible.
Ephesians 2:10 says, “We are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them.”
So, long before we were born, God knew what our lives would look like and He gave us what we needed to do the good works that we were created for. The challenge for us, then, is to seek His guidance in how we do that because life can change drastically for us. While that’s not news to the Lord, it may require some tweaking on our part.
Some Background: I was perusing Facebook the other day when I came across a long time friend’s post (Cindy Rushton) talking about being an overcomer. She posted, “You are designed and destined to be an overcomer!” My first instinct was to be sarcastic so I said, “Well, I certainly have been given enough to overcome!”
As the discussion went on, I relayed how I had to make some adjustments over the years in order to keep writing. The limitations of chronic illness had a profound effect on my ability to write from the thinking process to the physical act of writing. However, I have found workarounds and even changed what I wrote about over the years-lending my voice to different passions I’ve had…and I’m still writing!
I’ve written a lot about my life on this blog and all the adjustments and limitations I have had throughout my years, but I had really never thought much about the ways in which I had to make changes in order to continue writing until one of her last comments to me, “That was powerful!
As I looked at her words typed there to encourage me as she so often does, it suddenly hit me that my writing testimony really IS powerful. Right then and there, I felt the Lord leading me to write a part of my testimony that I had never considered much up until this point.
I was born a writer and I started writing even before I knew the Lord at the age of nine. I wrote poems and songs in my youth. In my teens, I began writing humorous one-liners about life I called JoJoisms. I’ve got well over 700 of them now. When I began homeschooling, I wrote books about communication skills and articles for homeschool magazines. And my most recent writing passion is here writing in support of those (like me) with chronic illness.
Now, when God gives you a passion for something, He doesn’t usually give you a clear path to success. You may have noticed that people who have gone on to incredible things have usually had a lot of struggles along the way. The Lord allows struggles: heartache, difficulties, and trails because many times that is exactly what it takes to get them done.
Have you ever heard of an accomplished pianist, a professional basketball player, a famous band, an accomplished actor, or a prolific writer who went from zero to hero in a straight line? Everyone has struggles to overcome on the way to where God leads them. It’s not the absence of trials that brings success; it’s what you do with them. It’s how you handle them, how you overcome them that defines you.
When God put a calling (writing) on my life, He factored in my limitations, my frailty, my stupidity, my fatigue, my pain, and my stubbornness! And my stubbornness is one of the reasons I didn’t give up my calling, my dream, my purpose, and my ministry! The other is Almighty God. Because…I AM an overcomer. …And I’m still writing!
Pain and Fatigue: One of the first things that began to impact my writing was pain. Arthritis, neuropathy, and Fibromyalgia made my fingers and wrists ache. In addition, God only made me 5′ tall so, when sitting at a normal-sized desk, I was unable to reach the keyboard properly.
My first adjustment was to sit on my legs as I typed. Unfortunately, after doing this for many years, it took quite a toll on my lower back as well. Not too long ago, we solved that problem by switching me over to a laptop computer that I was able to use on the couch.
As the fatigue from Fibro began to increase, I was forced to let go of some of my other online activities in order to have the energy to continue writing. I had begun a copywriting service only to abandon it shortly after it launched as I didn’t have the energy to pursue that stream of income. However, that was for the best as I felt the Lord leading me to write in my own voice. …And I’m still writing!
Broken hand: About six years ago, I broke my hand in three places after a roll-over car accident. My left hand was in a splint for months and when it emerged, I found that my middle finger had decided to hug my ring finger when I made a fist. Not thinking that this was a big issue, I decided not to have another surgery to fix it as I thought it only was an issue of aesthetics.
Not too long after physical therapy, I realized that I would have to relearn how to type! It took me several months to get decent enough to go back to my blogging and about a year for it to become natural. I still can’t snap my fingers with that hand, but fortunately, that’s not a skill that is required to write! …And I’m still writing!
Essential Tremors: A little over a year ago, I was diagnosed with Essential Tremors. That’s what doctors call it when they can’t find a cause for your shaking. I had always had what I called jitters, but I had been told it was a sugar issue. It’s true that it was worse when I was hungry, but in the last few years, those jitters had followed fatigue and stress as well as JUST BECAUSE.
Further, they had spread from my left hand to my right hand, both legs, and my head when it was particularly bad as well as internal tremors that feel like I’ve just been asked “Your money or your life!” As you might have guessed, it’s even more difficult to type when your fingers have a mind of their own.
Part of the challenge for me now is that I like to write my notes for an article or book in a notebook, but it’s a bit hard to read my writing–even for ME! Lastly, it takes me 10x as long to type (or mistype) or write than it used to. I’ve been known to backspace and retype something six times and still have it come out wonky.
Final Thoughts: The Lord’s call on our lives is still the same, even after the heartbreak of trials and the limitations of this life. It might not look like we expected it to, but it can be even better if we stay the course and cling to Him.
So, it’s been a bit of a journey to overcome these obstacles, but with God’s help, I’m adjusting. …And I’m still writing! What are you still doing with God’s help?
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!
I’ve been talking about exercise and diet as it relates to chronic illness this month. Last week I talked about my quest to find something that would allow me to lose weight. This week I’d like to share a sort of discovery I made that added more energy to my day.
I was talking about trying to find an eating plan for weight loss with my aunt when she mentioned that she was told to have protein shakes in place of meals. After looking into the kind she used, I found that there was some research that suggested that older women should have more protein than the RDA recommended.
Here is just some of the of the information I found:
“The current recommended dietary allowance (RDA) for protein is 0.8 grams per kilogram (g/kg) of body weight a day for adults over 18, or about 2.3 ounces for a 180-pound adult. But research is showing that higher levels may be needed for adults age 65-plus.” according to an article on Feb 12, 2018, called: How Much Protein Do You Need After 50? – AARP“
Further, the above article goes on to say: “In our older years, we are at risk of sarcopenia, which is the loss of muscle mass, strength and function. The essential amino acids in protein are key nutrients for muscle health, but older adults are less responsive to low doses of amino acid intake compared to younger people. A 2016 study from researchers at the departments of Food Science and Geriatrics at the University of Arkansas found that this lack of responsiveness can be overcome with higher levels of protein consumption. The study says that protein levels in the range of 30 to 35 percent of total caloric intake may prove beneficial, although the researchers acknowledge that level could be difficult to reach for many people.
People with sarcopenia may need 1.2 to 1.5 g/kg of protein a day, according to the Mayo Clinic; that’s 3.5 to 4.3 ounces for a 180-pound adult. It is also important to eat the right type of proteins, including some that include the amino acid leucine, which has been shown to preserve body muscle. “Leucine is found in higher amounts in animal foods: beef, lamb, pork, poultry, fish, eggs, milk and products made with milk. It’s also found in soybeans and, to a lesser extent, other beans, nuts and seeds,” according to an article on the Mayo Clinic’s website.”
From anther: “Researchers say that the percentage of protein in the diet had a positive relationship with pain threshold, meaning that subjects who ate more protein had higher pain thresholds. The pain threshold is the point at which sensation becomes painful, and a low threshold is associated with fibromyalgia” . according to an article, Vitamin E, Protein May Improve Fibromyalgia Symptoms, from Sept. 6, 2015
Armed with this information, I decided to have a high protein/low carb shake instead of breakfast and a high protein/low carb protein bar for one of my healthy snacks. What I found surprised me! After a short while, I began to feel more energy! Energy I hadn’t felt in many, MANY years!
As I mentioned last week, I had asked my doctor for her ideas for losing weight and she suggested I limit my calories to 1200/day. When I began keeping track of calories, I found I was only eating 900-1000 calories/day. Simply adding more protein, I began to feel more energy.
Something else I found was that actually eating more calories (the right kind of calories/foods) helped my weight loss program with my health coach. This got me thinking that those of us with chronic illness/conditions might actually need more protein or certain foods or kinds of calories to have more normal energy levels. I’m no doctor and I haven’t been able to find articles about this, but I plan to talk to my doctor about this when I go and this is why.
How many people with chronic illness fatigue have trouble doing normal activities? How many who are having good energy days fall off the energy wagon when they attempt to do exercise or housework or walking?
I also have Essential Tremors and I have noticed that, when I’m especially shaky, I feel especially tired. I’ve also noticed that many of my hot flashes are followed by an immediate lowering of my energy level. What if those of us with chronic illness fatigue need a higher amount of protein or a higher amount of calories from certain foods?
Has anyone else had better energy by eating more protein or more calories from particular foods? Is this a thing? Could this help Fibro? CFS? What say you?
Check back here next week for a look at food and chronic illness.
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!
When you have chronic illness, it’s easy to feel alone in the world because you tend to be more isolated than most people. I hope that this blog series has helped you to see yourself as a unique child of God with your own unique story.
Now that you know how truly weird I am, I have one last little bombshell to drop on you. It’s actually a miracle or series of miracles, but if you think about it miracles tend to be WEIRD, don’t they?
I didn’t even have cancer like a normal person…and I’m very grateful to God that I didn’t!
I Was a Cancer Survivor Before We Knew I Might Have Cancer: Most people either feel sick or feel a lump and go to the doctor after which they are referred to an Oncologist who does some tests and probably performs surgery. Most or at least many, have to go through chemo and/or radiation.
Not me! Cuz I’m weird! I was a cancer survivor before even my doctors suspected I could have cancer! My diagnosis came as a result of several miracles. My doctor decided to go looking for a fibroid tumor that she knew probably wasn’t there and found a cyst on my ovary instead. During the surgery, the surgeon called an audible and decided to remove my entire fallopian tube on a whim. She said later that she just felt like she should do it because, “cancer likes to hide.”
Here’s the link to My Miracle Story with all of the odd details of how I survived a rare and aggressive cancer that, most often, takes the life of the woman.
I hope and pray that by now you’ve been able to see your weirdness less as something that isolates you and more as something that makes you, you…makes you unique. Don’t forget that miracles do happen and they are usually pretty weird! Wouldn’t you agree?