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When Tired Runs Deep in Chronic Illness

When you have a chronic illness, chances are you get tired. Very tired. I know I have days when I’m lying on the bed, and it still feels like I could collapse. Does that make sense? Not unless you’ve had this feeling. Chronic illness can be just plain exhausting.

God says, “For I will satisfy the weary soul, and every languishing soul, I will replenish” (Jeremiah 31:25). That’s a truth I cling to on days when it feels like the weariness just won’t end. Because when the tiredness goes beyond affecting my body to affecting my very spirit, I know I need help. And even though it’s not always in my own timing, God does replenish my soul!

Wherever you’re at in your personal journey with faith, know that God loves you and cares about the weight you carry. So next time you’re tired, or your soul feels weary, maybe lift up a prayer. God does care. He wants to love on you no matter what you’ve done, no matter what your background and no matter how much you’ve rejected Him in the past. Maybe it’s time to turn your heart toward God and just see what He can do to replenish your soul.

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There is No Magic Pill That Will Cure My Chronic Illness

This is a post for the newly diagnosed. The ones who have just realized there is no magic pill that will cure their chronic illness. Those who have suddenly and sometimes frighteningly hit a health wall they never wanted to run into. Some of us have been sick for years, trying to find answers. And some have suddenly become ill or injured, when they had lived an-until-now healthy life. No matter what end of the spectrum you fall on, receiving a medical diagnosis is kind of a big deal.

A medical diagnosis means everything changes. You must reoriented your life around an illness. Every day you live life with the moment-by-moment knowledge that all is not well inside your body. How you get up in the morning, how you go to work (or don’t), how you eat, how you take care of your home…everything changes. And when you’re first diagnosed, it can be a scary time. Just the label chronic illness carries a weighty ring to it. But it also carries a meaning that it’s not going to get better. It will be with you for life.

So if you’re reading this and feeling that all-too-familiar tightness in your chest, strain in your stomach or tears welling up in your eyes, it’s possible that you’re moving through the stages of grief. We all know these stages, whether or not we know them by name. First comes denial (this cannot be right or this cannot be happening to me). Second comes anger (who is to blame?). Then it’s bargaining (If only I had not… or if I could just find the right doctor). Fourth is depression (I need support or I’m so incredibly sad). And last is the stage of acceptance (I can move on and I will still have a good life). Sound familiar?

And by the way, people living with chronic illness or their caretakers don’t move through these stages cleanly once and are done. Sometimes we have to revisit a stage or even go out of order in our personal grieving process. Sometimes we sit in one stage for a really long time. If this is your case and it’s not the stage of acceptance, you might want to look for a counselor who can help you move forward. Each time chronic illness takes a little more of our life, we must revisit the stages of grief.

Today, if you’ve just been diagnosed with a chronic illness, take a moment to breathe. And remember a few things:

  • You’re (or your child is) the same person you (they) were before a phone call or appointment with news changed your life.
  • You will figure this out. Give yourself time to acclimate to your news and to a new way of life.
  • Chronic illness means medical things move slowly. Unless you’re having an emergency, learn to plan and learn to wait. Trying new treatments and seeing new specialists takes time.
  • Chronic illness is not the end. Though it changes how you live your life, it does NOT mean you loose your life. You are allowed to have dreams and pursue them!

It’s true there is no magic pill for those living with chronic, rare or invisible illness. That’s reality. But when you get to a stage of acceptance and learn to stay in that emotional space, you’ll find chronic illness helps you appreciate the most important things in life…while putting the rest in perspective.

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Masquerading as a Well Person Day After Day is Exhausting

The truth is most people don’t know how bad I can feel or how much I can hurt because of my chronic illness. Even my family is somewhat unaware of these vital facts…because people who live with chronic illness become very good at ignoring their pain and illness. Some people do it because they don’t want to feel different. Some don’t want the attention. Some mask their symptoms out of guilt. Some push them away because they have been ridiculed or told they are crazy. Some even hide them because their loved ones do not believe they are really sick.

Turns out that living your life without focusing on your symptoms is actually psychologically good for you. Have you ever heard of the old adage that “what you focus on grows?” Well, it’s true of our chronic illness and pain as well. Now, I am NOT saying your illness is all in your head. But have you ever had a stomachache you were sure became worse because you were so worried it was something awful? That’s the connection between our mind and our body. It’s a strong little guy. Despite our best efforts, we can’t break the connection if we try. Thus, what we focus on does grow. Focus on pain, and it’ll likely get worse. Focus on joy, and it’ll likely increase.

Somedays it’s all I can do to just focus on the basics. On a really bad day, I focus on relaxing and enjoying the latest on television or Pinterest. Because I know that if I try to do more, I will simply prolong the time in bed. So, instead of dwelling on how bad I feel, I distract myself with a story or a mind game. And if I can do nothing more than watch television to get my mind off my illness, that’s what I do. On a better day, I avoid talking about my symptoms. Why? Because it doesn’t really help anyone. No one around me can do anything to ease my pain or illness. (Unless they’re helping distract me from my illness.) So, while I will ask for the help I need, I leave talking about my illness for about two minutes in the evening to my hubby. That’s my personal allotment of “sick talk,” unless I’m having an emergency.

The fact is: masquerading as a well person day after day is exhausting! But it’s kind of a great idea.

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Chronic Illness and Everyday Bravery

Today, I performed an everyday act of bravery. I got a haircut.

I hate getting my hair cut. Because when you have a chronic illness, everything changes. With my particular illness, fragrances and chemicals can set off a reaction that will cause me to feel ill for hours or even days. So, it’s a commitment to walk into a salon and sit next to perfumes, hair products and chemicals. Alas, everyone needs a haircut now and then.

Probably, I could find a stylist who has a home shop, who would use special shampoos and who would work hard to ensure her space is aired out properly. Maybe, someday I will need to go to those lengths. But today, I can still walk into a salon and walk out without calling the emergency response team. I will pay for my decision at least through this next day. However, I have to say…it’s super cute. And better yet, I got to go with my teenage daughter and banter with the stylists about Halloween costumes and how our family took home the best Disney costume award on our last cruise.

But I digress. Today if you have chronic illness, I’m pretty sure you performed several acts of everyday bravery too. Take time to notice what you did. Notice that you achieved something, no matter how small. And when people say “it’s all in your head” or “aren’t you better yet,” recall that you’re doing something brave everyday…just by living with chronic illness. You are amazing.

So be strong and courageous!

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You can experience hope in the midst of chronic illness!

Albert Einstein said, “Nothing happens until something moves.” That’s true in much of life, but perhaps even more so in the chronic illness community. The truth is that unless we are willing to put ourselves out there…to hope for a better future AND then move toward it, nothing will happen.

It is HARD to hope. Sometimes, it would seem that we hope and wish for a diagnosis, a treatment or even a cure. And each time we don’t achieve our goal, we can loose sight of a better tomorrow. It takes a ton of emotional resources for someone with chronic illness to hope. Because chronic illness, rare disease, invisible illness, undiagnosed illness and chronic pain each require most of a person’s daily emotional resources. Meaning, it’s just plain hard to deal with decreased capacity, whether it’s physical, emotional or intellectual! Our spirits get tired.

Yet good things happen when you dare to hope and then choose to act. A new, better physician can be found. A medication trial can begin. You CAN make it out of bed and have the pain melt away when you don’t think it can get any better. Your son or daughter can make friends despite their unique medical needs. You can make a difference, even if you can’t do everything you used to or even everything you want to. Action matters.

I’m not sure where you are at today – just hanging on by a thread or feeling full of personal power. In either case, do what you can to embrace hope. Embracing hope is the best thing you can do for yourself. For when you hope…you eventually act! Moving forward requires a vision for a better future AND action toward that future.

What can you do today that will stir up hope in you or move you to action?

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With chronic illness, you are the expert in your own body!

I don’t know about you, but sometimes I wonder if doctors are listening to me. Sometimes, it seems like what I say is being heard (i.e. – my body is making sound waves that travel through the air to the doctor’s hear). But at the same time, the doctor is not really listening (i.e. – concentrating so the brain processes meaning from words and sentences).

Or maybe doctor’s are listening to me, but the meaning they understand from my words is not really the meaning I wish to convey.

Perhaps doctors don’t listen because I’m not being clear. OR more likely, perhaps the meaning a doctor understands is not full and complete because THEY HAVE NEVER LIVED WITH MY ILLNESS IN MY BODY. So when I say my face flushes, for example, they might take that to mean my face gets red. When I might really mean, my face gets red, feels like it’s on fire, and causes the rest of my body to feel like it might burn up from the inside out. Same word: “flushing.” Very different understanding.

So today, consider how you’re communicating with your physicians, but also remember that you are and always will be the expert in your own body! Just as we must learn to communicate with doctors so they really hear what we’re trying to say, we also need to learn to do so with a sense of self-advocacy. A doctor’s job is to understand the science and technique behind wellness. But that doesn’t make them omniscient. Sometimes, even within illness categories, what works for one might not work for another. It’s okay to tell a doctor something isn’t working for you. (Of course, give it time if it’s a treatment that needs it!) And if you have suggestions, gather the courage to bring them to the table. You are the expert in your own body. Live that way!

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Why My Child with Chronic Illness is My Hero

The day before her 11th birthday, my daughter was diagnosed with a chronic illness. Since a child, she has dealt with a chronic condition, and often experiences debilitating symptoms. Certainly her life has been good, but her childhood has looked different than most kids’…because everything changes when you’re sick.

Chronic illness isn’t for wimps! That’s established. But when everything changes in your life due to a diagnosis, you can either choose to be brave or you can choose to let symptoms control you and your life. How you live with chronic illness is a choice.

That’s why my daughter is my hero! Here’s why:

  • She lives courageously! Whether it’s summoning up the strength to make it to school, to face another medical appointment or to use her creative gifts, she does it with courage. She knows her limits, yet she pushes her boundaries to have the life she wants. She doesn’t quit on life when it gets difficult or even overwhelming. Every good day is used to its full (to say, go to school or even visit Disney World), and every bad day is an opportunity to regain her strength (and perhaps to check in on the latest adds to Netflix).
  • She acts bravely! Though she is sick, her actions toward others rarely reflect a sense of self. She reaches out to friends in need, serves her community and stretches herself in order to provide for others. Right now my daughter is coming alongside a pregnant friend, volunteering every weekend at church and training for a half-marathon to raise money for Hope Water Project to provide clean water for the Pokot tribe of Kenya. And none of these things were my idea! She is putting aside (or working through) her own chronic pain and illness to make a difference in others’ lives!
  • She embodies strength! Sometimes, for someone with chronic illness, strength is conquering your fears. But sometimes strength is just getting out of bed. I have seen my daughter display strength in both situations! If you know what it’s like to live with chronic illness, then you know what it’s like to be afraid. Afraid of not being able to function. Afraid others won’t understand your limitations. Afraid a good day will quickly turn to bad. I’ve seen my daughter manage her fear and embody strength simply by dealing with each moment as it comes.

That’s why my chronically ill daughter is my hero…because she is uncommonly brave!

 

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Three honest reasons you can face chronic illness with bravery

No one sets out to be sick (unless you’re a hypochondriac or have some other similar psychological impairment). We just don’t welcome illness like we do a best friend or a long lost loved one.

Yet, chronic illness snuggles up next to those it chooses with little regard for their thoughts on the matter. And it can be daunting to face. No matter where you are on your journey with chronic illness, having less control over your body and thus less control over your life can be frightening. Fear is an insidious thing. It gets in our heads and hearts and works hard to convince us that we ought to lay down and just stop…stop trying, stop living and even stop loving. Fear can paralyze you.

That’s where uncommon bravery comes in. Being chronically ill isn’t for sissies! It often requires more strength and more courage than the average man, woman or child musters up on a daily basis. It forces us to become above average…to be brave.

So, what are the three honest reasons you can face chronic illness with bravery? Easy.

  1. You survived life thus far. A diagnosis doesn’t change that.
  2. Your strength (though it may waver) can only get stronger as you learn how to navigate your unique illness.
  3. You still have a contribution to make to the world. Sick or well, you matter! And what you bring to the world is still very much in need. Being sick doesn’t need to define who you are, so don’t let it.

Become brave…the easy way or the hard way! Because one way or another, you must face your illness. I choose courage. I choose the easy way.

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How to Stop Pleasing People

It is impossible to please everyone. Yet, when you develop a chronic illness, this fact seems more powerful than it did in the time before illness. Because sometimes when you spend your days simply hoping to make it out of bed, you feel like you cannot please anyone…even yourself. But that doesn’t mean we don’t try!

So, let’s commit to making a change. Let’s work on living from our own personal priorities, instead of working to make everyone happy. Don’t have personal priorities? Now is the time to decide what you value most. Because our values help us make good decisions when we’re feeling great and when we’re having an incredibly hard day. Pleasing people = no. Living by our values = a resounding yes!