The Comfort Zoneless Advantage

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!

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Summer Activity Ideas for Chronic Illness

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!

What are your favorite summertime activities?

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Summer travel tips for chronic illness

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!

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Tips for beating the Heat: Summer 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
  • Unexplained tiredness
  • Irritability
  • Rapid breathing
  • Dizziness

Come on back next week when I’ll be talking about summer travel tips for chronic illness folks!

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Summer health risks for chronic illness

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.

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Food and Chronic Illness

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 health issues). 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.

Here is an article I found that speaks about 4 Foods That Help Prevent Chronic Illness. Here’s a bit of what they talk about:

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.

Another article I found was specific to Fibro. Here’s one called Foods to Eat and Avoid with Fibromyalgia from Medical News Today.

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!

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Protein and Fatigue

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.

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Doing Time: Life on the Inside…of Chronic Illness

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.

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Chronic Illness: Better Prepared to Handle Social Distancing or Overwhelmed Enough as it Is?

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?

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Social Distancing: Tips from the Experts!

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!

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