Tag: chronic illness

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A Different Way to Look at Trials

Whether or not you have a chronic issue/illness, you will face trials in your life. It’s not a matter of if, but only when. And most of us face trials multiple times in our lives–some of us, more than one at a time.

It’s sometimes hard to find the joy inside things that feel like the end of your world as you know it, isn’t it? I’ve noticed that there are different ways in which we can see trials and, that one fact alone, can determine how we face them.

When we’re at the bottom of our trial mountain, it can be hard enough to see a way up let alone how we can get there. But if we look at that mountain in a different way, we can see that there is a way up. You see that mountain up there in the picture? One side of it looks straight up. It looks hard to climb. Hard to navigate. But look at the back of that mountain? There’s a slope. It’s a steep slope, but a slope is better than straight up any day of the week!

Sometimes that slope on the other side is NOT as easy to climb, but that only means we should look at it a bit cockeyed. See how tilting the picture of the mountain gives us a better view of the slope in that picture? It may be harder to climb than turning the picture will make it appear, but what I’m saying is that there is your best shot. By being able to see that other side of the mountain with a tilt and enlarging the terrain allows us to learn better how to navigate our way up and over.

God often allows obstacles in our way to strengthen us-to build us into the person who can fulfill our purpose. Sometimes the storm clears the way. Sometimes storms are there to prove to us that we have strength we didn’t think we possessed. And that strength always comes in handy, if not for our own needs, then for the needs of our friends and family.

When we go through trials, we often feel they are a big part of our identity or, worse yet, ALL that we are. We are so much more than just the struggles we go through. God often builds us through our struggles, but He wants them to create a stronger soul able to reach and inspire others because nobody escapes this world unscathed. EVERYONE will have trials and those trials are more easily lived if we have others to look to who go before us and pave the way.

We are so much more than our struggles. We are so much more than our pain. We are shaped by them, but we are not defined by them alone!

The road to success is often paved with rocky terrain, u-turns, detours, and mountains to climb. Look at almost any success story and you’ll notice that the success you see is only the snap shot from the top of the mountain. When you read the book or watch the movie of their life, you see the rocky road they had to take to get there. And isn’t that a more inspiring story anyway?

Isn’t it inspiring to know that you aren’t the only one who struggles? Isn’t it nice to know that you, too, can achieve? That your struggle is what MAKES your success and not the reason you CAN’T succeed?!

I created this meme a while back when I saw a topic on social media talking about race and how it identifies who they are. I disagree. It’s only part of who you are. Who you are is SO much more than that and it’s so much more than a condition or illness you have. You are so much more than the struggles you have. God made each of us an individual-uniquely designed for such a time as this. He wants us to use the gifts and skills He’s given us to help others. If you can’t help others directly, you can inspire them with who you are and how you handle the trials you face.

So many with chronic illness believe they have nothing to give, but that couldn’t be further from the truth! Inspiration is worth so much more often times than giving a million dollars to a charity. It’s worth so much more than physically being there to help someone up because you can lift them spiritually!

Remember, “If you give a man a fish, you feed him for a day. If you teach a man to fish, you feed him for a lifetime.” -Matthew 4:19. If you lift someone up off the floor, you help them get up once. If you lift them up spiritually, you may lift them up for a lifetime. That is what this blog is all about. That is what I strive to make my entire life about.

If I can inspire just one person, then my struggle has a higher purpose, doesn’t it? That higher purpose has another purpose because, in living my life to inspire others, it also inspires me to keep going! It gives me a purpose where I may have believed I had none.

Living with chronic issues or trials isn’t necessarily an end to your purpose here on planet Earth. It can be THE purpose you were put here by God to serve: an inspiration to others so they don’t give up on what God put THEM here to do!

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How Best to Support Someone with Chronic Illness

I’ve done a post about this before, but this one is a bit different. If you have chronic illness or know someone who does, this is a post that will help you communicate your love and support. You might also want to share this with those you love.

Not Supportive:
“You don’t look sick!” (He/She’s heard this a thousand times! What it says to them is “You don’t believe me.”)

“It could be worse!” (While this is true, it isn’t helpful. It’s like telling someone who just lost their child that it could be worse because they could have lost both of their children.)

“Must be nice not to have to go to work!” (Yes people have said this! It’s like telling someone who has the lost a leg, “It must be nice not having to walk and have others push you around all the time.”)

“It’s probably just stress!” (Stress isn’t diagnosed as Fibro of Chronic Fatigue. Saying it’s JUST stress minimizes what they feel and says they could feel better if only they’d do something different. Trust me. They have probably already tried.)

“Are you sure you just can’t __________?” or “Have you tried ______?” (They’re sure. Whatever it is you think they haven’t tried, they have!)

“Call me if you need anything.” (While this sounds helpful, people with chronic illness are usually too proud to ask for help or they don’t want to burden anyone. They won’t call.)

“Feel better soon!” or “Hope you feel better.” (The chronic part of chronic illness means they most likely won’t be feeling better. Saying you hope they feel better isn’t supportive because it implies that they should be thinking more positively about their chronic issue. While they may find something that helps down the line, it probably isn’t as easy as this statement sounds.)

“Just think positive!” or “Have you prayed about it?” or You’re always complaining!” (It’s not a matter of thinking positively and God sometimes doesn’t answer our prayer. Paul prayed for God to take away the “thorn” in his side and God told him that His grace was sufficient for him. Telling someone with chronic issues to pray or think positive is like telling them they are a bad person or a bad Christian because they weren’t healed yet. They may be healed by the Lord sometime in the future on this earth or they may need to wait until they are on the other side of Heaven.)

Supportive:
“I’m so sorry!” (Then let them share with you, cry with you, and be uplifted by your support. They don’t need you to try to fix them. They need a friend to support them. They’ve got doctors, other chronic illness friends/groups, and God for that!)

“What is it like?” or “How does it affect you?” (This tells them that you are interested in listening and allowing them to vent a bit. Venting isn’t the same as complaining. Venting to someone willing to understand is helpful. Once the person is allowed to share, they feel a bit better and can actually be at least to some degree more positive.)

“How’s your pain/fatigue level today?” (This tells them you get it. This tells them you care. This tells them they can open up to you without being judged. This is helpful.)

“Wow! That stinks!” (This says you get it and you aren’t trying to shove another “cure” on them. This may actually open up a discussion that may lead to something that helps them because they feel more comfortable with you.)

“How can I help?” (This tells them you really care and are willing to really be there for them.)

“I’m getting a coffee. What can I pick up for you while I’m there?” (This tells them you’re serious about the help you are offering. This way they don’t have to ask. You are offering.)

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Distraction Ideas

If you struggle with chronic illness/conditions, you know all too well how many times we need a distraction. From the pain. From the boredom. From the fatigue. Here is a list of ideas that may help. I’d love you to share your favorite method of distraction.

  1. HUMOR:
    The best way I’ve found to distract myself from the pain or fatigue of chronic illness is with humor. I watch funny reruns of tv shows, funny movies, funny memes on social media. All these get me to laugh, have fun, and help me to cope with the fatigue and pain of fibro and other issues I deal with.
  2. CONVERSATION:
    Another of my favorite ways to distract is to engage in phone calls with friends and relatives. Catch up, reminisce, and engage. You can have a great time with people even if you can’t get out and even if they are 3000 miles away!
  3. CREATE:
    I am a creative soul and I love to create new and unique things. I write JoJoisms, blog posts, and I’m working on some books I’d like to get traditionally published. If writing isn’t your thing, you can turn to art, crocheting, crafting, music, running a YouTube channel with your passion… The possibilities are endless!
  4. INSTRUCT:
    If you have a talent or skill, why not set up a blog or YouTube channel or other way to teach others how to master something new? You have no idea how much your knowledge of history or science or math or any art form might help others and give you an outlet and a reason to bounce (figuratively) out of bed each morning.
  5. CREATE A BUSINESS:
    Use any of your skills or talents to start a business! You’d be surprised how many YouTube sensations started off just sharing a passion. There might be things you can do that wouldn’t be too energy taxing that could bring you some income! You may not know until you try.
  6. PRAY:
    If you can’t think of anything that you could do that excites you, you might try praying. Pray for others. Start a prayer group, a support group, a texting ministry. Start a prayer ministry on Facebook where you pray for your Facebook friends and their families. Prayer is powerful and it can be a powerful way to both minister to others and fulfill a purpose here on earth as you struggle with chronic issues.

    Can you think of any others? How do you distract yourself?
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Three ways to beat feeling useless with chronic illness

So many times those of us with chronic illness feel useless because we don’t have the energy to do things with our kids, to help around the house, or to contribute to the family finances. We’re often too tired or in pain to do the things we think we should do. While we may not be able to do certain things, we can, indeed, contribute to others lives in so many other ways that we probably don’t think matters.

  1. Lower Your Standards for Usefulness
    The first thing I did that helped me to feel as if I had a purpose to my life may sound a little defeatist or wrong. I had to lower my standards of usefulness.

    My idea of living with a purpose and making a difference in the world was HUGE! When I was a kid, it was being a famous singer. As I got older it was being the BEST homeschooling mom and helping others to do big things for God. When I found I wasn’t able to get out of the house much (or off the couch often), that made me feel useless. The house wasn’t clean, the kids couldn’t run and play with me and I wasn’t changing anyone’s life.

    But when I began to see the little things that I COULD do, I realized that they made a difference in other people’s lives…and sometimes a BIG difference! Instead of hosting big events in person, I hosted an event online. (Before that was a real thing!) Instead of running with my kids, I concentrated on teaching and training them with knowledge and helping them discover who God intended them to be. Instead of writing a best seller, I wrote a little blog that helped others with chronic illness live with more joy.

    Those things turned out to be much more rewarding!
  2. Be Virtually Useful
    Just because we can’t reach out in person, doesn’t mean we can’t help especially in the Information Age! As I mentioned before, I ran an online convention for a few years before online events were even popular. I also took to social media to help others deal with every day issues. I had a texting ministry where I’d text a few people daily to uplift them during a difficult time. I also found ways to earn money online via websites and various original products/services.

    So, I was contributing to my household’s finances even though I wasn’t able to hold a job!
  3. Take Up a New Hobby or Purpose
    Sometimes God will allow you to do the same things you’d like to do in a different way (virtually). Sometimes God gives you a whole new purpose! I have a degree in Speech Communication so when I wasn’t able to do in person speaking engagements, I did them virtually. Later on other things became more important to me.

    One of my passions is purple. I’ve always loved the color. About 11 years ago, I started a fan page on Facebook for purple lovers. That page grew to over 10K fans. The page was just for fun. It doesn’t sell anything and I just share and create and post pretty purple things. That’s all. But I can’t tell you how many times I’ve received a comment or message about how important those pretty purple things uplifted someone during a trial in their lives!

    Sometimes you have no idea the importance of something you do for someone else!
  4. See How God Can Use You
    My advice for you if you are struggling to find a purpose because of chronic illness or a chronic condition is to pray to have God reveal to you how He can use you where you are right now. It doesn’t matter what you can’t do. It only matters what you CAN do! So…

    What can YOU do…right now?!
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When Things Happen While You’re Not Looking

When we’re going through something difficult, we often don’t see much progress. We don’t feel God near us or we don’t see an answer to prayer. Most of you, like me, have lived with chronic issues for a lifetime. My fatigue started when I was a child. I could never understand how other teens and pre teens had the energy to run around and even do chores.

As we go through difficulty, we get used to dealing with it as best we can. That’s good, but it’s just as often, bad. What I mean is, we get so used to being fatigued, to not being able to take a shower without having to rest, that we don’t even consider that anything could change and we may not even notice when it does!

Case in point, my weight loss journey. For those who are just joining me, here’s the background to get you up to speed:

I’ve been packing on the pounds for over twenty years. After delivering my son at the ripe old mom age of 37, I was thrust into peri menopause. It was both frustrating and frustrating.

What I mean is, it was frustrating because I was slowly adding poundage. I was a different kind of frustrated because that’s when the Hellish Hot Flashes started. I was all kinds of frustrated that my doctors (plural) would NOT believe I was actually IN peri menopause! And I was frustrated because no matter what I did, what I didn’t eat, how hard I tried to exercise, and how hard I tried, I just kept gaining!

After the hysterectomy four years ago, my weight gain took on Olympic proportions! I was now a whopping 152 pounds! That might not sound like a lot to YOU, but if you consider my stature or lack there of, is only 5′ nuthin’, it was quite astounding.

It took me 21 years to add the weight and I really had no idea how bad I looked til one day I got a glimpse of myself in the mirror. How could I be gaining all those years so much weight and having it make THAT much of a difference…and I not NOTICE??? It happened while I wasn’t really looking. A little at a time. Then, one day, I saw it and BAM!

So, I found my health coach and Mary and I got to work. I began losing weight but just a wee bit at a time so…I didn’t notice. My husband kept telling me that I was looking great, but when I looked in the mirror I still saw a fat me. Until…one day…

It was interesting to me how it went both ways, but that’s not the end of the story. While I was trying to lose the last five pounds of my menopause weight, I was pretty frustrated that my thighs and upper arms still had wagging rights.

However, as I was contemplating the pain level of squats and modified pushups, something amazing happened! My thighs were discovered social distancing! Yes! While I wasn’t looking, my thighs actually responded to…

EXERCISE!

I’ve been exercise intolerant for about 58 years, the sum total of my life here on Earth ever since the space stork dropped me off here. How could it be that I was FINALLY able to do some that actually worked? Answer? I dunno. I think it was just the combination of the incredible job Mary did with my weight loss that allowed me to have enough energy to actually DO any exercise and my husband’s suggestion that I try squats and modified pushups.

I’m both proud and ecstatic to announce that my thighs (and even my calves) are thinner than they have been since I can remember! I’m still experiencing more energy and fewer/less severe flares since my 31 pound weight loss. Meanwhile, I’m working on my upper arms and turkey waggle neck. Film at 11!

What I’d like you to take away is how many times we are actually MAKING progress, but not actually SEEING it. God works that way sometimes. Sometimes we are working hard at what we feel God has asked us to do, but we are not seeing the fruits of our labor. Sometimes we are doing something that WILL have a positive effect on our health, but we don’t see any progress.

Sometimes, we just have to keep looking before we can see it.

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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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You are more than your chronic illness

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!

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Look for the good and you will find more

Last week, I talked about how 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!

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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!