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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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Thankfulness Habit #4

So far, we’ve discussed looking for the joy that God surrounds us with, doing things we love or used to love, and using the internet to bring joy with friendships and fulfilling our purpose or showing our talents. This week, I’d like to share something very important as you find things to be thankful for each day. Give yourself permission to fail.

If you really can’t think or do something one day, two days, it’s ok. Start again tomorrow. Forgive yourself as God forgives us when we fail. And start again. Tomorrow is another day to make a fresh start. Each time you do, you will gain joy and strength and eventually a habit that sustains you in the darker times.

Sometimes it takes a while to find something you’ll be thankful you did in the future. Give yourself space to fail. If you try doing an activity you once loved and it just isn’t something you can do now or it’s no longer something that brings you joy, try something else. Some things are worth trying just so you know they aren’t what you need right now.

And then there are some things that you were meant to do for a time. I told you about how my For the Love of Purple page was taken from me by Facebook because I wasn’t able to prove I was me due to a glitch in Facebook’s site. I had run that page gleefully for almost ten years when this happened and I was upset at the time. However, after trying my best to recover it, I found that I felt it was time to move on.

For nearly ten years, my purple passion had not only made me happy, but it apparently got some women through some tough times. I had no idea what I was doing was bringing beauty into their world which allowed them to move forward after the death of their husbands or a divorce until I began getting messages from my fans. Just a little purple each day meant so much to them at such a hard time in their lives.

Well, that phase of my life was over, but I felt a calling to help support those going through chronic illness and that brings us to my blog and facebook group. You never know where God will lead you. I want you to remember that you can find joy inside your tunnel of trials if you look for them and work toward fulfilling a purpose even if it’s just texting a loving message to someone who is hurting or smiling at a stranger at your door.

What will you do? I’d love to hear your story!

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Thankfulness Habit #3

In the last two weeks, I’ve shared two tips for developing a habit of thankfulness. The first week I shared how to look for the joy all around you and last week I talked about bringing (or reintroducing) activities into your life that you find joyous. This week, I want to tell you about some new joys you can bring into your life.

If you can no longer do the things that brought you joy in your youth or you can’t think of any new things to do that will bring you joy. Can you make time online to do things that bring you joy? Most of us chronic folks have a hard time “doing” due to fatigue or pain, but there is one place most of us can go to find new joys and that is the internet. Whatever you think about the evils of the internet, you have to admit it has its merits.

You can do just about anything online these days including banking, gift buying, and even working. But the one thing most of us crave is interaction. The worldwide web hosts a great deal of sites in which even we, who are housebound, can go to find friendship, support, information, and distraction.

Social media is a great way for the chronically ill to socialize as well as find support, understanding, and fun! Facebook is my go-to social media site. Not only do I have over 1000 friends to share my life and experiences with, but I have several wonderful groups that support various issues I deal with. These are my people. These are the ones who understand me, who don’t ask silly questions or give me unsolicited advice. It’s also the place I can interact with my IRL (In Real Life) friends and family who live too far for me to visit with in person.

If you find yourself an empty nester or living away from family or you just can’t get out much, social media and other internet social sites are a great way to connect to others who you’ll find yourself being thankful for when you count your blessings each day.

If you’re an artist, you can display your creations on social media or on your own blog. The same is true if you’re a writer like me. You can share your insights or your stories on social media or on your own blog like this one.

The internet affords us many opportunities that allow us to be connected and use our talents without having to leave our homes. Is there any work you can do from home like writing, internet marketing, internet sales, blogging, or even a regular job you can do from home. Many companies now are hiring people to work from home. Look into things that might allow you to be productive from home given your limitations.

One last thing I wanted to mention is starting a Facebook or Reddit group. I had a very successful fan page on Facebook for purple lovers. I didn’t make any money from it. I just brought some joy to other purple lovers like me. Unfortunately, I built it to over 8500 people but I didn’t have a moderator or another admin as it turns out I should have.

Facebook started a new procedure where they demand you prove you’re you or they take away your admin status. There is some kind of glitch in their system that didn’t allow me to do that and so I am no longer admin on my For the Love of Purple page. If I did it over again, I’d have a few moderators who could reinstate me.

I now spend my time running Life Beyond Surviving Facebook group and am content to leave For the Love of Purple fan page behind me. It continues to grow without me and is now almost at 10,000 fans.

Whatever it is that brings you joy, purpose, or inspiration, challenge yourself to do it daily. The internet is a wonderous place to display your talents, serve others, or display your passion. What can you use the internet to bring you joy and fulfill your purpose? Think about it.

Next week, is my last article in this series so stay tuned!

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Thankfulness Habit #2

After finding something each day to be thankful for, there are a few more things I find that help me find joy in my life. The next one I want to talk about is ‘things that used to bring me joy.’

When we go through trials, we often find ourselves too busy or too frustrated to do the things that bring us joy. Sometimes it’s too expensive to be involved in those things. Other times, it’s simply been so long that we just plum forgot about the things that we used to love to do. After a while, we may not even realize that we are no longer doing the things that bring us any joy.

I’ll bet, after you just read that paragraph, you have identified a few things you used to love to do. What were they? Is it possible to do one of them now? Some of the things we used to love to do are not a possibility now with the fatigue or pain of chronic illness. Other things might be though. Pick one to do this month.

If there isn’t at least one thing you used to do that would work for you today, think back to things you might have considered but didn’t have the time. Or think about things you could do that might bring you some joy.

Here are some other ideas you can use to surround yourself with things that bring you joy:

  1. Old Tv shows you used to love
  2. Funny memes with silly jokes
  3. Buy things in your favorite color (hey, it works for me!)
  4. Do things that remind you of better times
  5. Take out your children’s old things
  6. I invite you to think up your own if these don’t work for you…

So your challenge going forward is not only to look around to see the joy that God has put in each day to bring you joy, but to search for things to do that will bring joy into your life each day.

Your next challenge is to come back next week for another tip on The Thankfulness Habit.

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The Thankfulness Habit #1

November is the time we celebrate Thanksgiving and no blog would be complete without a post or two on giving thanks. But for the chronically ill, being thankful can be difficult. It’s so hard to see the joy in your life when you are dealing with so much, especially when those around you are giving thanks for health, wealth, and close relationships at a big party where they are able to enjoy themselves free from the distractions and frustrations that is the life of the chronically ill.

It’s so hard to think positive when you’re struggling, but it is essential to try to do so or eventually lose all hope. Joy is found in thanksgiving but the trick is to cultivate a spirit that can give thanks. It isn’t easy, but it is possible and it may take some time. My first suggestion for you is: Start small.

The only way to start anything is to start small. Can you find just one thing in your life to be thankful for today? Just one thing. It doesn’t even have to be a big thing. Just SOMEthing. Look outside your window. What is the first thing you see that shows God’s beauty? What’s one thing you see that gives you peace?

Outside my home are beautiful purple flowers. Purple always makes me feel better. I’ve loved purple since practically before I was born. ANYthing purple reminds me of beauty and gives me peace. What is that for you? Is it a color? Flowers? A beautiful sky? Green grass?

Look around at your home? Are their reminders there that give you comfort? After going through tremendous financial issues, I can now look at my house and see security. Not that I own it or because it’s so well built or gorgeous, but simply because I’m not out on the street where I could have been at one time in my life.

If neither of those strikes you with joy or blessing, look at yourself. What could have been worse, but for the grace of God? No matter how much pain or fatigue I feel, just knowing that God could have let me die of a rare and aggressive cancer fills me with thankfulness.

Looking deeper, what issue do others with one of your diagnoses have that maybe you don’t have to deal with? For me, even though my fatigue prevents me from working a job or going out much, I count myself blessed that my pain level is so much less than what others experience with Fibro. What is that for you? Can you feel thankful for that?

Another place to find something to be thankful for is to look at your family. Do you have a spouse that tries to understand and help you? Do you have children who are precious blessings from the Lord? Is there an extended family member, neighbor, friend, online friend, who has been a blessing to you that you can count as a blessing that day?

I’m not saying this is easy because as you look at your life, Satan will redirect you to all the things that are hard in your life or even about that very thing or person you could view and something to be thankful for. But if you look for that one thing each day to be thankful for, you will find them. When you do, you can then challenge yourself to do so each and every day. Find something new or find a new reason to view that one thing as a blessing and joy in your life.

For me, this finding something new in one thing over and over again is a TV show that always makes me laugh. I love the old 50s sitcom I Love Lucy. It always makes me smile. Watching the very same episode can be a blessing over and over again.

Having chronic illness or other chronic issues isn’t fun. Almost nothing about them are even remotely fun, but even so, you can find joy, humor, beauty in the other things around you that, given time to look daily, can help you see the joy. I believe that God puts these things in our lives to help us get through the difficulties we have in this fallen world. So, look for your joys daily and build your thankfulness habit. See if that doesn’t help you find your joy.

Next week I’ll share another step to getting the Thankfulness Habit.

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Four Things Satan Uses Against the Chronically Ill: Conclusion

Satan’s ultimate goal is to separate us from God and he will use whatever he can to distract us, deceive us, divide us, and finally to destroy us, but there are a few things we can do to combat this. Knowing that this is his goal is only half the battle. We also need to know how to defeat his efforts in our lives.

“For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.” – Jeremiah 29:11

  1. Be Aware: The first thing we need to do is to be aware that this is what is happening. Most of the time we are so busy fighting for our health and struggling with our daily issues to even notice that this is what he is doing. Chronic illness is the PERFECT target for Satan. It’s much easier to attack the weak and weary. But once we know that this is exactly what he does, we can be on the lookout and be proactive in thwarting his efforts to derail us.
  2. Be in the Word: Don’t let a day go by without reading and feeding your soul. Don’t let a day go by without going into your prayer closet and spending time with the Lord. If you can’t go to church, have church come to you. When I can’t make it out to church, we watch it on TV. I love Dr. Charles Stanley. I even record his sermons to watch later.
  3. Make an effort to connect: It’s easy to let ourselves drift from our support whether that’s family, friends, or church. Make an effort to get out if you can, invite others in, or reach out over the internet. Any time with others on the phone or over text is golden when you are alone with your thoughts on a regular basis.
  4. Find your calling: Find what feeds your soul and adapt it if need be to your health/financial issues. Make art, write those stories, take those pictures, blog about that topic that inspires you. See how many you can inspire, support, help, and feed with your talents. This makes for a productive and joyous heart.

God created each one of us with a purpose. Do you think that just because He has allowed chronic illness or financial struggles in our lives that He has taken that purpose away? No. That purpose may be handled differently or you may have a new purpose.

“For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.” – Jeremiah 29:11

No matter what struggle we must endure this side of heaven, God has blessed us with the tools we need to fulfill our purpose. That starts by understanding how Satan works to derail us and taking steps to use God’s Word, God’s people, and your God-given talents to take back your joy. Who’s with me?

Next month, I’ll be sharing a new series that will go a bit more into depth on our purpose despite chronic illness/issues for a series I’m doing called Don’t Give Up! I hope you’ll join me!

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Four Things Satan Uses Against the Chronically Ill: Part 4

So Dr. Charles Stanley’s sermon on the four things Satan uses against us that I watched last month really touched me because I felt it applied in a specific way to those with chronic illness.

“The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.” – John 10:10

Satan’s ultimate goal is to separate us from God. First, he uses our chronic illness to distract us from our joy and from our purpose. Next, he deceives us into thinking we don’t matter. Then, he divides us from our support (family and friends), our church, and God’s Word in the hope that we will be distracted from God. When he does that, he stands a better chance of succeeding in the destruction of our faith.

At our lowest, we may question if God still loves us. There may be times when we may think that, if God really did love us, He wouldn’t allow us to go through all of this. At that point, we may begin to pull away from our church, our church family, and even God.

Knowing that Satan is out to destroy us, we need to be on the lookout for situations we find ourselves in that are ripe for Satan to use for just this purpose. I don’t know about you, but there are times when I’m so tired I don’t have enough energy to sit up. I am so exhausted that all I want to do is go to sleep. I can’t prevent the times when I’m too tired to go out or in too much pain to do something for someone, but I can control how I react to that.

I’m pretty ornery by nature. If someone tells me I can’t do something, I’m bound and determined to try (unless it’s something I don’t agree with anyway). I’m not saying I always recognize Satan’s tricks at the time or that I can always keep a sunny attitude. I’m just saying that I can decide to do whatever it may take for me to control my attitude and turn it around.

There are still times I am down. I still have times when I get angry and don’t recognize that I have blessings I’m not concentrating on at the moment. But I do eventually notice and I do eventually turn myself around. And I challenge you to do it too. I challenge myself to help you.

“The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.” – John 10:10

The way I look at it, if Satan’s desire is to turn me from my Lord and Savior and from my God-given purpose, then it’s my great pleasure to throw it back in his face as I cling even closer to Him and get creative to find a way to serve others according to His will however I can! Won’t you join me?

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Four Things Satan Uses Against the Chronically Ill: Part 3

So far we’ve talked about distraction and deception, two of the four things Satan uses to keep us from our joy, our purpose, and our Lord. The next tactic that Dr. Stanley talked about was division.

“But He, knowing their thoughts, said to them: “Every kingdom divided against itself is brought to desolation, and a house divided against a house falls.” – Luke 11:17

It’s no surprise that one of the most important issues the chronically ill have is loneliness. We become isolated due to the lack of energy and the pain we deal with on a regular basis. That doesn’t allow us the ability to visit with friends and family or even hold a job. Isolation leads to a dividing us from our support system, our church family, our livelihood, and can eventually lead to losing our relationship with our Lord and Savior.

Little by little, we find ourselves alone much of the time questioning if our family and friends really love us. Busyness is a staple in modern life. Parents with young children are busy earning a living and running from activity to activity. People with lots of family around are busy with family events. Working people are busy working their way up the corporate ladder and business owners are busy wearing lots of hats. Very few take the time to reach out to people who they don’t see often.

Even people who aren’t busy don’t usually reach out to those they don’t see often. Top of mind is not just a sales technique, it’s a human rule of engagement. And, by the way, it isn’t just confined to the healthy.

That’s the reason nobody calls us, but there are reasons we don’t call anyone else either.

1. We’re afraid of seeming needy.
2. We are not comfortable asking for help.
3. We may not be able to keep a date to meet others elsewhere.
4. We don’t feel comfortable inviting people over because we may not have cleaned our house in a while.
5. We may not feel like entertaining, but we’d like someone to be with.
6. We don’t have an Any Time friends who we feel comfortable having over to just cry with us.

Once we have successfully, though unintentionally, isolated ourselves from others we begin to question if anyone really loves us. We may question if we are worthy of love.

So, how can we lift our isolation if we can’t get out and be with people? Fortunately, I have some ideas and technology plays a large roll.

1. We can become active in online groups and social media. Just because you can’t see someone’s face, doesn’t mean we can’t socialize! Online groups can help us feel connected. I run one of them on Facebook called, coincidentally, Life Beyond Surviving. Come join us!

2. We can start a blog, visit and comment on blogs that speak to us. Some blogs like this one are specifically for chronic illness, but others, like several others I write, are for fun. Have some fun! Be inspired. Be uplifted.

3. Start texting with friends you can’t get to see. I do that with my children, my family, friends in other states, and even with friends nearby that are not able to get away to be with me.

4. Call people on the phone. Use Skype. Keep in touch any way you can. It doesn’t take being in person to perk up your social life. Just talking to people will keep you from feeling isolated.

5. Ask anyway! Ask a friend to come over. It doesn’t have to be a formal thing that makes you feel you need to spend three days cleaning for. Just ask a friend. Talk to them. Be with them. Don’t worry about the dust. Don’t worry about being a burden. Most of the time, they will be happy to be asked in.

“But He, knowing their thoughts, said to them: “Every kingdom divided against itself is brought to desolation, and a house divided against a house falls.” – Luke 11:17

Next week, I’ll talk about the final part of Dr. Stanley’s message, but for today, promise me you’ll invite someone over, make a phone call, reach out online, or comment on some social media or blog posts. How about starting with this one? LOL

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