Monthly Archives: July 2014

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How to Count Your Blessings When You Have a Chronic Illness

It requires bravery to count your blessings when it seems like your body is falling apart. When you have a chronic illness, it’s easy to ignore the good. When things around you are in a natural state of decline, you can get sucked into the sentiment that everything is going to “heck in a hand basket.” And when we fall into these thinking traps, it is difficult to recover. In this state, we see scarcity in the world.

Thought it can be difficult at first, I believe you can learn to count your blessings. You can learn to see the abundance in the world. Here are a few tricks that I use to help me get started:

  1. Thankfulness – I can choose to be thankful for the little things and the big ones. Whether it’s rain for the grass or a diagnosis that helps guide my healthcare, I can choose to count those as blessings.
  2. Comparison – Though comparison is always a game of subjectivity, when I compare my life to that of others, it’s always possible to find someone with pain or symptoms worse than mine. I can count my lesser symptoms as blessings.
  3. Wisdom – I have learned a ton through being chronically ill. I can choose to count all my new knowledge and wisdom as a blessing.
  4. Strength – I have gained physical, intellectual and emotional strength over the many years of my illness. This hard-earned strength has become a blessing that now spills over into other’s lives!
  5. Friendships – Because of my illness, I have gained new friends…others who have similar symptoms and parents of children who have chronic illness. What a treasure it is to count those blessings!

I could go on…but you get the point.

Sometimes what starts out as pain, ends in a gift: blessings you can count. Choose to count your blessings today. You are not simply lucky. You are blessed!

 

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Difficult Days Happen…When You Have a Chronic Illness

If you don’t have a chronic illness, if you’re not the one with a rare disease, if you don’t have an invisible illness, then you likely won’t relate to what I’m about to say. But I hope you’ll listen. I want to tell you that when you have a chronic illness…difficult days happen.

People with chronic illness might be jumping and running, laughing and playing one day. Then the next be at home in bed feeling like they got run over by a truck. Your child might feel fine one minute, and the next be struggling with an incredible amount of pain. Your friend, who was perky when she arrived at your party, might feel like the world is spinning by the time she leaves. Or your wife might be fine one week, but really struggle to contribute in any way to the household the next. That’s because…

Difficult days happen!

No one in the chronic illness community wants to experience a difficult day. Yet, we all know these days are destined to come. Why do they hit? Maybe because we overdid it the night before. Maybe because the seasons are changing. Maybe because the man who lives down the street has a hangnail today. (Okay, that’s not a real reason…but you get the idea.) Occasionally difficult days happen because we chose to use our energy on something that was really important to us the night before. Sometimes they happen because our environment is out of whack. Other times, who knows why they happen? But they do.

As someone with a chronic illness, I would like people around me to understand that I want to be cautious with my energy on the good days (to make sure I keep a reserve), and at the same time I want to have a good time. And I want them to know that I need a bit more space and compassion on the bad days, because on those days I’m working extra hard to just maintain.

During my healthcare journey, I attended a program for people with chronic pain and illness in which we were encouraged to have a difficult day plan. We could put this plan in writing or make it a verbal agreement with the family. But the plan needed to include the things we would continue to do, start to do or stop doing when the times were difficult. For some, exercising (maybe at a lower intensity) is still important on a difficult day. For others stopping all activity is what needs to happen. Some people need to watch a funny television show or movie to get the endorphins going. Others need to have time to meditate or stretch. We each just need to know (or explore) what works for us.

If you’re trying to support someone with a chronic illness, find out what works the best for them. Then you know how to help (even without being asked) when the day is hard. And if you’re someone with a chronic illness, make a difficult day plan. Choose ahead of time what you think will help distract you from the pain and illness. And choose two or three healthy activities you could participate in to help you recover some strength. (Me…for the really bad days, I have a few television shows I wait to watch on Netflix so I can do an occasional difficult-day-marathon. And I try to get up, get showered and do as many normal things as I possibly can. I also use these days to pray and meditate.) Each plan will look as varied as the individual…but it helps to have it in mind. That way when the difficult days come, you have already decided how you’re going to react.

Difficult days happen. What’s your plan?

 

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5 Ways You Can Still Make A Difference When You Need to Lie Low

Sometimes I feel useless when my chronic illness flares up. Most people that know me would be partly surprised with this statement. But then if they stopped to think about how activistic I can be, they’d see the frustration in needing to stop and rest…to do less.

To be clear, I do NOT like doing less. I would rather do more. I’d rather go, go, go. Not stop, slow down or rest.

I’ve heard from quite a few people who live with chronic illness that they feel the same way. As their productivity goes down, their frustration goes up. And an impatience to just feel better sets in. But alas, chronic illness has a way of telling your body that rest is a priority. And too, importantly, I’ve learned if I rest when my body asks for it, I recover my strength so much faster!

So, I do. I stop. I slow down. I rest. And then I feel…well, useless.

After participating in this cycle for far too long, I decided to make a list. Ever heard of the idea of a “bucket list?” The term that became popularized through the cinema represents a list of those things you’d like to do someday…before you “kick the bucket.” I’m still working on my life bucket list. But I’ve got my bedside bucket list further along.

Sometimes when I’m feeling bad, I’m too sick to check anything off my bedside bucket list. But other days, I spend that forced time in bed or at home to make a difference. I can always send up a prayer. And I can encourage people on Facebook or via email. I can spend time with my kids, or watch a movie with my husband. I can even check the family finances or research something I’m interested in.

I’m sure you’ve got many ways of dealing with your forced down time. What are your favorites? What’s on your chronic illness bedside bucket list?

 

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3 Reasons I Embrace My Struggle with Chronic Illness

A few of you who have chronic illness are shrieking inside at this moment…”how could you ever suggest I embrace my struggle?” Then you might add, “You have no idea what my life is like…what I’m going through.” And on that point, you would be right. I don’t fully understand your reality.

But here’s what I do understand about chronic illness. I know the kind of pain that makes you feel like you absolutely do not or cannot think of moving. I know what it’s like to have parts of your body move without your control. I understand what it’s like to watch your child struggle for breath or writhe in pain. I know what it’s like to get extremely ill in a matter of minutes in a highly unpredictable way. I know what it’s like to have doctors say it’s all in your head. I understand what it feels like to be afraid of what each day or moment could bring. And I know what it’s like to have a loved one with mental illness in the family. I don’t know your particular struggle. But I know that even though the details are different, our journeys likely look much the same – we have some form of struggle.

Daily I read Facebook posts from people who have questions about their illness, who are sick and tired of being sick and tired and who are sometimes doing everything in their power to escape the hold illness has on them. Of course, for anyone who has an illness that is truly curable, these thoughts are not for you. The thoughts that follow are for those of us whose illness has no cure and will not go away. I write this for those who are dying to escape their illness and who push against it so hard that they’re declining instead of improving.

Here are three reasons why I choose to embrace my struggle with chronic illness:

  1. I can spend my time feeling sorry for myself OR I can spend my time feeling joyful for the good in my life. It’s really easy to feel sorry for yourself. I have moments when I feel alone and incredibly sad about this darn illness. Sometimes, it’s even the illness speaking, as chemistry wages war inside my body. When those moments come, I breathe deeply and remember that things do not always look so bleak. (If you are someone who has not just moments of sadness, but days and weeks without end…please, please go see a doctor or therapist. There is a better day.) But aside from those moment of distress, daily I choose to look up and find the good in my circumstances or relationships. And even when money has been tight or when I’m in an illness flare, I can be thankful. Even when I can’t make sense of my medical bills or I have to stay home from a special event at work because I’m not okay, I can find happiness. It is possible to CHOOSE an attitude of joy…and the feelings will follow.
  2. I can spend my life wishing for what I don’t have OR I can spend my life living out of the abundance I do have. Every time I watch my family leave for an evening of entertainment without me because I am sick that night, I have a choice to make. I can wish my life were different, or I can spent my time enjoying what I do have. Sure, it’s difficult to miss out on things. That’s real. But when my family leaves and I am alone, would it help my illness more to spend the night crying or to spend it laughing at a bad movie? I choose laughter. I choose to appreciate what I do have. A great puzzle on my phone. Or a Facebook session. What do you do when you’re confined to your house or bed? You can make a choice that promotes personal health and live a life appreciating abundance.
  3. I can spend my energy frantically seeking a way out OR I can spend my energy peacefully creating a way through. This one is the clincher. And to be clear, I am absolutely in favor of personal health research, self-advocating for the best care, and periods of trial and error with appropriate treatments. But each of us has a choice when we face illness. We can choose to act as if life is squishing us like a bug…and we need to struggle with all our might against a force much larger than us. Or we can choose to act as if life is gently holding us…and we must only find the rhythm with which we need to move. One picture leaves you exhausted, anxious and afraid. The other leaves you searching, moving and resting. I choose the latter. I choose to work hard to find the best way forward AND rest hard in the knowledge that choosing peace and acceptance of my personal limits actually offers me freedom. It makes me strong!

That’s why I embrace my struggle with chronic illness. Because if I don’t, it will always get the better of me. But if I do…I am the one in charge. I am the one who is strong.

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The Perception of Invisible and Chronic Illness

It doesn’t make sense. I look fine on the outside. And, I’m so not fine.

Logically, I can understand why well-people seem unintentionally ignorant at times. Because I hardly ever look sick. The old adage “what you see is what you get” doesn’t apply to those with invisible illnesses. Some people will never understand how everyday tasks can be exceedingly difficult or even impossible for me. They don’t see me during the hours I’m at my worst, because that’s when I stay home in bed or spend time on my couch. They probably won’t see the baskets of meds on my shelves or the volumes of medical paperwork I work hard to keep organized. Well-people don’t know how long my morning routine must be to accommodate the difficulty of just getting my body going. Hopefully, people will only see me at my best…as a productive member of society, contributing in my own unique way. Because while I am sick, being sick is not my identity.

But what’s on the outside doesn’t always display what’s really happening.

People with chronic illness can get very angry when the well-people around them speak or act out of ignorance. Well-people cannot ever understand what it’s like to be sick. And the result…some well-people seem to have what might be referred to as “foot-in-mouth disease.” Even the simplest question from a well-person (“How are you feeling?”) can prompt a wave of frustration from someone whose illness can change on a dime and who thus never quite knows how to answer. Though most well-people have good intentions, their uneducated questions, not-so-helpful hints and personal “when I was sick” stories can be exhausting and enraging for the sick.

Personally, I’ve decided to counter ignorance with love. That means when I get an uneducated question, I try to respond with grace. And when I get those helpful hints on diets, exercise, vitamins or the latest treatments, I listen to see if by chance they know something I don’t that actually might be helpful (even just a sliver of helpful). And when they offer their “when I was sick” stories, I pull out as much empathy as I can find…because even well-people like to know their story is valuable.

So, go ahead and wonder what it’s like to have chronic or invisible illness. But if you ask me…and really mean it…be prepared for my honest answer. Because everything is not always as it seems.

 

 

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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?