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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Don’t they know…

I just had to share this because it’s just too funny. Last week I shared about how my daughter and son in law got me a set of weighted silverware to keep my food in my mouth and not on the floor. Well, I just had to share how it came because I don’t think they quite understand their target market:

If your fingers shake enough that you need a set of weighted stainless steel utensils, you might want to get your husband to help you get them out of the box for you.

Yes. They come with each utensil hard wired in! Each of the two forks and spoons and the one knife comes with TWO twistie ties double twisted (yes in BOTH directions)!

If we didn’t laugh…

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Essential Tremor Tips

If you have Essential Tremors, you probably have a few tips and tricks up your shaky sleeve, but I thought I’d share some of mine.

So, I’ve been posting about my health journey to inspire others to begin their own and I’d love to help you reach your health goals if you’d like someone (a coach) in your corner who’s been there.

Part of doing that means taking some selfies to post and show how my life has changed (and it has SOOOOO MUCH). Selfies are kind of hard when your hands shake but I have found a work around.

My first tip is to hold the thing requiring the most dexterity in your hand that is affected the least. For me, that’s my right hand and happily, I’m right handed. 😀

However, if I needed to do something with my right hand, I had a terrible time trying to hold the camera still and press the button so I enlisted the help of the 10 second delay. After setting the delay, you click the button to take the picture and wait the designated ten seconds. Just make sure you’re not shaking or it might turn out like this:

One way I was able to get a good picture with my left hand was to hold my arm as close to my body as possible, thereby giving it something to rest on. Since Essential Tremor is an action tremor and not a resting tremor, this works pretty well.

Ok. On to other tips I’ve found useful.

I’ve noticed that typing on a normal sized keyboard like on my laptop is a bit tricky, but not quite as difficult as typing on my iPhone or my iPad’s screen. However, if you get yourself a purple stylus, you increase your dexterity quite a lot. I guess it kind of fools your brain into thinking your finger is further away from its target thereby not increasing the rate of tremor.

The last tip I have is to use weighted utensils. I’ve been known to toss a salad on the floor and all over the counter so my daughter and son in law bought me a set of weighted utensils. Having the weight is a bit difficult to get used to at first, but it does weigh down your hand so it shakes less and keeps the olive on the spoon or fork from rolling off into your lap. Ask me how I know.

Got any Essential Tremor tips? Share.

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Does your wedding dress still fit?

Mine does!

So our 34th wedding anniversary was on January 24th. After losing 36 lbs last year, I decided to take the dress out of the box to see if it still fit! I was about 103 when I first wore this dress and I’m about 111 now. I wasn’t entirely sure this was going to work, but after 34 years, I thought I’d give it a whirl!

To my utter amazement, I could get into it though I do fill it out just a tad differently than I first did. However, it’s not entirely a bad thing. 😀

Please excuse all the wrinkles (in the dress that is!), it has been through 34 years, survived eleven moves, and three states! And so have I!! ;D

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My Silly Selfie Situation

Life Beyond Surviving was created to help those dealing with chronic illness or other chronic issues to deal with trials more productively by pointing them back to the joy that is often hidden inside the struggles. Part of seeing the light INside your tunnel is being able to see your difficulties as funny. Case in point:

This started off serious and quickly deteriorated into a giggle fit! So, I’ve had this outfit hanging up on the back of my closet to fit back into when I reached my goal weight. I’ve lost 36 lbs and found I could finally fit back into my jeans and size small purple flannel shirt.

I was trying to take a selfie—but things didn’t go according to plan. I have no real experience taking selfies so I stuck my iphone in my left hand so I could gesture with my right. I’m right handed and my left hand is afflicted with more of the Essential Tremors than my right. Gesturing with my left hand might have yielded some awkward results.

The following is what happened in chronological order.

By the end of this little activity, I was laughing so hard I was almost on the floor. I decided to post them as is and everyone on Facebook found it hilarious.

Clearly JoJo needs some selfie tips! Got any to share?

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When Even Your iPhone Gets Frustrated with Your Essential Tremors!

Anyone need a giggle break in the midst of 2020? I’ve got you covered! I call this installment of Weird Stuff Happens to Me: When Even Your iPhone Gets Frustrated with Your Essential Tremors!

Yesterday’s cooking event was not without incident. Famous last words: “I don’t need my ‘Kevlar gloves’ to make zoodles!

So, I proceeded to prove myself wrong by cutting into my nail. This morning while attempting to fill my water bottle, it overflowed onto the counter and the floor. While trying to clean it up, I had an unusual time trying to get the paper towel in my hand and it wound up flying through the air like some Bugs Bunny cartoon.

I decided to write a post about my exciting life with tremors, but while trying to take a picture of my right hand, Siri had a message for me! It’s on the top of the last picture. It says “Hold Still.” 😅😂🤣

I couldn’t make this stuff up if I tried! ROFL

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Some encouragement from the Bible

So this month, I have shared how those of us with chronic illness seem to have been born without a comfort zone and how that has actually strengthened us both spiritually and mentally. I shared how our strength can be an inspiration and lesson to those who haven’t yet developed such strength. Then, I shared one of the most loved of my articles that spoke of the blessings of pain.

Now, I’d like to turn it over to the Lord. Here are some of the most inspiring scriptures from the Bible:

Philippians 4:13
“I can do all things through him who strengthens me.”

Isaiah 41:10
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”

Deuteronomy 31:6
Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.

Isaiah 40:31
But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

1 Corinthians 10:13
No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.

Exodus 15:2
The Lord is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father’s God, and I will exalt him.”

Ephesians 6:10
“Finally, be strong in the Lord and in the strength of his might.”

Deuteronomy 20:4
“For the Lord your God is he who goes with you to fight for you against your enemies, to give you the victory.”

2 Corinthians 12:9-10
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

Joshua 1:9
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

I pray this has inspired and strengthened you…

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The Blessings of Pain- Revisited

I wrote this article several years ago now. It’s one of the articles I refer people to who are just starting or who are growing wearing in their chronic illness journey because it’s so uplifting to think of your trials, your struggles in this manner.

If you’ve read it before, take another few minutes to read it through again. I promise it will help you put things in a more positive light and a better perspective.

The Blessings of Pain

Okay. JoJo’s gone off the deep end!  Brain fog has taken over and she’s completely out of her mind!  I hear ya out there.  You’ve stuck with me through some of my other unusual posts, but this one’s gone too far.  Stick a fork in ‘er, she’s done!  As someone who is in a fair amount of physical pain as I’m typing this, I understand your horror at this title, but give me a few minutes of your time and I think you’ll see my sanity returning and you’ll be blessed.

This idea started as a debate topic.  You see, (those of you who may not have known me long) in a former life I was an author and speaker on communication skills at www.ArtofEloquence.com.  I used to teach speech, debate and communication classes both online and off. Nowadays, I’m too tired, overwhelmed and in pain to run my business much less teach so I only do that on rare occasions.  This month was one such occasion.  I am teaching a homeschool co-op class on debate.  One of the topics I picked was Pain is Good.  I figured it was something with which most teens would be unfamiliar and would be a good life lesson as well as a great debate topic.  Pain keeps us from more harm.  Even babies would remove their hand from the fire, right?

As I began putting my week’s lesson plan together, it occurred to me that, while I am not a fan of pain (emotional or physical) itself, enduring it can bring some blessings that I’d never have had the opportunity to experience had I been healthy. There are some lessons you only learn from pain.  There are some lessons life cannot teach without it.  There are some blessings you will never notice unless you’ve been through a day where you felt your head would explode or years when you thought if you woke up without pain one day, you would HAVE to be in heaven.

Pain itself is bad, but enduring pain can be a good thing and bring blessings you’d never have known-but you have look for them.  They can’t always be seen by the naked eye or heard above the white noise of the TV.  But as soon as I reveal to you how pain can bring blessings, you’ll never look at it the same way again. There are several ways in which pain can bring blessings into your life and the lives of those you touch.

1. Pain makes you compassionate.

The people who have suffered the most, tend to be the most compassionate.  The more struggles a person goes through, the more they have compassion for others who are going through difficult times.  I’ve known some amazingly compassionate people who consistently take time to support, uplift and help others.  I almost always find that they have suffered a great deal in their own lives and have a calling to be of help to others. There is a saying,…

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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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Were you blessed to be born without a comfort zone?

It’s not easy having chronic illness, is it? Nope. It’s not something I’d wish for nor is it something I’d wish upon even those who “done me wrong.” I’ve written several times before about how I’ve found blessings inside the struggles: joys that were there inside the trials right along side the pain and fatigue. However, what I never wrote about before is how the struggle itself has strengthened me and my faith as nothing else could have!

Just like how working out builds a strong body (unless you have chronic illness lol) or how an athlete trains to be strong enough to win the big race, our struggles can strengthen us and mine have!

I’m sure you’ve seen those memes on social media about how “Nobody ever accomplished anything while in their comfort zone.” “You gotta get out of your comfort zone if you expect to do anything with your life!” Well, I’ll bet you were thinking, “I have chronic illness. I don’t HAVE a comfort zone!” And you’re probably right!

If you’re one of us (chronic illness/issues sufferers), you don’t think in terms of comfort. You think in terms of what is the least painful, the least energy zapping. You just work to make sure your pain or fatigue or discomfort isn’t as bad as it could be because there isn’t any real comfort inside the Chronic Illness Zone, is there?

Well, this got me thinking that so much of my life has be filled with not only pain and fatigue, but difficulties of various kinds. I was blessed to be born without a comfort zone. I was a painfully shy kid. What’s the worst thing for a shy kid? Having to meet new people! But that’s exactly what I had to do every few years. New town, new state, new school, new neighborhood…

I couldn’t look people in the eye when I talked to them. Shy people usually stay in the background: The Comfort Zone of the Socially Awkward. But not me! I couldn’t. I was always the new kid. The one dressed different, the one who called jeans “dungarees.” The one who pronounced SePULveda Blvd as SepulVEda. The one who was 4′ 10″. The one who had a NY accent in Virginia. I stuck out like a sore thumb.

And shyness wasn’t the only area of my life that was difficult either. As I’ve shared many times here on Life Beyond Surviving, I’ve had chronic illness and other chronic conditions most of my life. What I haven’t written about much is all the other ways in which life has been challenging for me.

I’m one of the only Christians in my family. I’m of Jewish heritage, but most of my family is either atheist or agnostic. Some are/were Jehovah’s Witnesses. It has always been a bit challenging at family gatherings.

In the 33 years we’ve been married, my husband and I have had quite a number of issues to deal with. My husband was born in Mexico so we’ve had some issues with racism and early on in our marriage we had some financial issues we had to overcome.

Several years ago he lost his permanent job and he’s been doing consulting work ever since. It is rather challenging, especially when the economy isn’t doing well or, say, a pandemic hits and jobs aren’t as plentiful. He’s had a lot of times in between assignments where we had to find alternative ways to make extra money.

Once, during a year of his unemployment, we had to work quite hard in our own business buying HUD homes and reselling them to real estate investors to fix up and resell. It was especially difficult to invest in real estate this way because HUD doesn’t like investors and they made it increasingly difficult for us to make a profit, but we persevered. We did earn a living doing this for a while.

We also worked for a while selling our own products on Amazon until we found that Amazon, while a FABULOUS platform for buyers, is very biased against sellers. I was constantly on the phone with a lawyer trying to resolve oversights where Amazon allowed scammers to spoof our listings and then sell subpar versions of our products or send none at all to the customer.

I’ve had to work 10x harder than most at just about everything. Maybe you have too. And yet, I’d still say I was blessed to be born without a comfort zone because I never felt hard work was an option. It’s just part of life. Knowing that made my adjustments easier because most of achievement is mindset, isn’t it?

Not having ever had a comfort zone has benefited me greatly because I assume I’ll have to work hard…at EVERYTHING! I expect it. I plan for it. I embrace it. Life with challenges has taught me to endure, but also to see the joy not only in what hard work brings, but in what hard work does. It builds character and it builds trust and faith in the Lord to bring you through just about everything the world can throw at you!

I’ve said it before. God uses everything for our good and we can use everything for our own good as well. Just like the butterfly struggling to get out of its cocoon builds strength in its wings, our own struggles build strength in US. I choose to look at life’s struggles and difficulties this way and it has helped me to see more of the joy in life and build my own strength to be who I need to be while I’m doing it.

God is my comfort zone. What say you?

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