Last week, I talked about how we, who have endured difficult health issues, have been blessed to be born without a comfort zone. I shared how I feel it has strengthened me both mentally and spiritually. This week, I’d like to share why that’s especially important these days and especially during Covid Times.
Have you noticed how even though society has so many “modern conveniences,” people complain that life isn’t easy? People seem to be offended by everything. They can’t seem to cope well with things the older generations thought were just part of life. I believe most marriages end in divorce because the younger generations no longer view relationships as something requiring work. They lost that loving feeling and so they simply move on.
Success in anything takes work whether it’s a business, a relationship, or an education. Unfortunately, fewer people these days will put forth the energy required to do so.
When I first began writing this blog post, I was doing it from my iPad because my laptop hard drive was failing and I was backing up all my work. I was typing with a stylus because my fingers shake due to Essential Tremors if I use my fingers directly. I was working on changes to my site on paper even though I had a massive headache. Why? You just do what you can with what you have.
It’s how you look at things. If you look for the bad, you’ll see it. If you look for the good, you’ll see that too! You’re not entitled to an easy life. A lot of American young people think so but it’s not true. The founding fathers knew this. We with chronic illness know this all too well.
If I go back a generation in my family, I see a much stronger work ethic than I see today. My great grandparents and my grandfather came to this country from what was then Russian to start over with nothing. My grandfather didn’t speak the language, but he worked hard and eventually was Vice President of a large Union in N.Y. He provided very nicely for my father and his brother.
My husband and his family came from Mexico with nothing not speaking the language. They worked hard. Made a life. They came for the American dream, but that dream was an opportunity, not an entitlement.
A job is hard work. A business is hard work. Marriage is hard work. Life is hard work. I think most people many years ago used to understand this. I think the younger generation can learn a lot from our ancestors. I also think they can learn a lot from those of us with chronic illness who don’t have a comfort zone. But I also think we should stop and think once in a while to learn from ourselves.
No, life with chronic illness isn’t easy. But life never promised it would be. And sometimes, if we focus on the strength it takes to get through a day with chronic illness, we can be proud of what we accomplished!
So far this month, I’ve talked about not trying to swim upstream, but allowing God to guide you and about how to look for the good in your struggles for a more positive attitude. This week in part three, I’d like to tell you something that will probably be the most uplifting thing you can take in during a time of crisis.
You are more than your chronic illness. I originally wrote this as a way of expressing my feelings about race. So many people talk about race as if that’s all someone is. But each of us is so much more than the color of our skin…or the chronic illness that affects our lives. Your life is the sum total of what God gave you, the experiences you have, and what YOU CHOOSE to do with it.
Two children of the same parents. One grows up to feel his upbringing was difficult and his parents weren’t this or that and that’s why he has trouble in life. The other grows up to believe that since he was poor and his parents didn’t do xyz for him, he learned to do for himself. Two children, same situation, two different lives.
It isn’t the difficulties we have in life that define us. It’s what we DO with them that counts. It’s what we make of them that matters. It’s what we learn from them that inspires…both us and those around us.
I wrote this poem a long time ago. I’ve shared it over the years many times both here and on social media. But I want you to really read the words this time. Take to heart what it says to your spirit.
You ARE more! If you stop swimming upstream and allow God to guide you, you’ll see that. He always knew you’d have these difficulties and He factored that in to the mission He gave you. Just as He did me. Your mission may be different than mine, but you have one. I pray the Lord show you what it is and how you can fulfill it despite or maybe because of your chronic illness.
Next week, I’ll be back to inspire you to inspire others!
Last week, I talked abouthow much more difficult it is swimming upstream rather than just letting the Lord lead you. This week I’d like to give you some perspective in re-framing how you look at things.
Have you ever played that game where you look for red cars and you suddenly noticed red cars all over the place? Or have you ever bought a new car and then noticed them all over the road? God created us with certain filters so that our senses don’t get overwhelmed. We filter out so much that we never notice because, if we did notice everything around us, we’d never be able to concentrate on anything. That works FOR us in this case, but it does work AGAINST us in others.
If you are having a bad day, or a bad year, you are more apt to get negative and see a negative spin on everything–even when there isn’t one. I once posted an adorable picture of a puppy. Most people said how cute it was. One person said it was horrible of me to post it because her cousin, twice removed, was once bitten by a dog in Cleveland.
There’s always a tendency to be a Negative Nelly when we are struggling. It’s normal to do that for a short time. What’s not normal (or helpful) is to live in Negative Nellyland. If you see that you didn’t naturally leave Nellyland, here’s what you can do to guide yourself out. I know because I’ve been on this road myself.
It sounds too simple, but it actually works if you work at it. Look for the good and you’ll find more of it. It’s not hard, it just takes practice. Look for good in all bad experiences: what you can learn from it, how much God has helped you, how blessed you are… and you will find it more and more. Then watch our Lord work and see how much more joy you have!
I remember some stories from Sept 11th about how something went wrong and they couldn’t get to work that day…in the twin towers! Or they were late and missed being there when the plane hit. Some of those stories were frustrating until you saw the bigger picture. The one God sees.
Having a baby is one of the most painful things. Know how we get through it? We know we get our CHILD at the end. The pain is worth it. No pain is worth it if we don’t see the value either in it or that comes from it.
Look back to some of worst things that happened in your life. What can you honestly say you learned from that? What can you say you gained because of it? Just as I have gained my life due to my husband losing his job for racist reasons, you can probably find SOMEthing you gained from the difficulties you’ve had or are having. One of them is probably experience that can help someone else!
Check back next week for a little pep talk I’m sure you’ll benefit from!
I pray you’ve had some blessings from reading my summer tips for chronic illness series this month. I have one more to share with you and it’s just some ideas I put together for summer activities for those of us with chronic illness.
The fatigue and pain we have in common are what may keep us from doing things. However, while they may limit the things we choose to do, they don’t have to completely keep us in the house by ourselves (for most of us anyway).
Finding things that are more comfortable to do during the summer may include things that are indoors, require little to no walking, and little to no travel. Here are some ideas I had. I’d love for you to share yours!
One of the activities I discovered during the excruciatingly hot summers in ARIDzona were the summer movie programs most movie theaters hold each year. They show older movies, mostly for children that they rerun in summer months. While you may not want to attend all of the days, you can pick and choose. Many of these movies are kid-friendly but not necessarily cartoons. I’ve enjoyed seeing them again and some for the very first time!
I don’t know if the theaters are open near you, but you could watch a Netflix movie with family or neighbors or you could view it while on a zoom call or phone with someone. Here’s one that came from my son. He loves movies, but during Covid, we couldn’t go to a movie theater so he made a movie marathon at home for his birthday. Have popcorn or your favorite slushies and invite friends or family over.
If you have a pool or live in a community with a pool, especially if it’s an indoor pool, that’s a great idea provided you’re not out too long in the sun or heat. If there’s shade, that’s a great place to sit and watch the kiddies or grandkiddies play and be with loved ones. (Covid not withstanding, of course)
Another great idea for kids activities is in the backyard where you can supervise. They can be playing in the backyard with you in the shade. Childhood games you remember from your youth can be introduced or you can tell stories of your life and ask your kids or grandkids about their favorite things. I used to talk Gameboy with my son.
Board games are another great activity to do with children, but there are some great games now for adults that can be played with visiting family indoors to keep out of the sun.
You can make up your own games for small children. Give them a letter and have them go around the house and find things that begin with that letter. If you have more than one kid, give each one a different letter.
Zoom and other online companies offer free services where you can actually see a friend or family member as you talk to them. I’ve had a weekly Zoom call with my mom, sister, aunt , daughter, and niece. Sort of a girls day in. Whoever can make it each week. It’s been a lot of fun getting to see family I’ve not been able to because we live so far. We’re actually all in five different states. Seeing their faces is sooooo much more fun than just hearing their voice on the phone–especially if you can do it as a group!
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.
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!