Archive | August 2019

Sick & Tired : Chapter 7

“But You Don’t Look Sick!”

Preparation: Read Chapter Seven this week.
After reading, begin answering the questions at the end of the chapter. I will list the questions at the end of this post. We invite you to share your insights and experiences, and how you responded to the questions. We will encourage one another in the process. You may have chronic illness(es), but you do not have to bear them alone. Let’s be here for one another.

Note: Except for quotes in italics, words in the post are Marie’s.

Today I took our granddaughter Sophie to lunch and shopping for her 9th birthday. She wanted to go to Red Robin for lunch, so I drove around the restaurant until I found a handicap parking spot. I left the one for handicap van parking vacant. I walked in with my arm crutch, limping my way to the restroom before being seated at a tiny table. My crutch awkwardly leaned against the wall. I had to adjust my hearing aids to minimize the restaurant noise, then it was a struggle to hear Sophie’s words. I took out my reading glasses for the menu, then my distance glasses for the remainder of the meal. Without my glasses, I have double vision. When we finished the meal, I had to make another stop in the restroom before limping to the car.

We drove to Kohl’s where I found another handicap parking spot. This time I lifted my SmartScoot® out of the back of my Subaru Forester, and drove into the store to look for birthday items. Before I reached the back of the store, I had to find a restroom again. While Sophie shopped, I struggled with double vision, but managed to keep up with her. We then moved down to Five Below where she found many low priced goodies. My energy was flagging, but I could keep up with my scooter. After I dropped her off at her home, and parked in my own driveway, I could barely shuffle from the car to the front door. I was thankful that the bathroom was close to the front door. These precious three hours spent with my granddaughter will probably cost me two days worth of energy, but it’s worth the cost to me.

Such is my life with Multiple Sclerosis. I have a sign on the back of my car that says “You can have my handicap parking spot if you take my MS.” I have HCP tags on the car. I limp with an arm crutch or a walker, I drive a scooter for distances and places wide enough to accomodate the radius of its turns. It’s obvious that I have some disabilities. Yet still, after nearly forty years of living with MS, I feel people judging me if they see me climbing out of my car after parking, or standing from my scooter to move to a chair or sofa. I can see the doubt in their eyes. I overhear the muttered remarks such as “Yeah, brain handicapped maybe!”.

Honestly, it’s easier to stay home. And it’s tempting to avoid going out. If you live with chronic illness, either personally or as a caregiver, you have probably faced the same kinds of judgment.

Author Kimberly Rae speaks about it in Chapter Seven. Here are some of her words:

“No one likes being judged or misunderstood, which is why we want to defend ourselves when people say the very common phrase, ‘But you don’t look sick!’ Sometimes they say it out of bewilderment, sometimes out of a judgmental attitude, and sometimes they actually think they are being encouraging by letting us know we don’t look like half-dead drowned rats, considering we are so sick.”

“Here’s my point. There are always going to be people who don’t understand. Always. We can make ourselves sick trying to prove our conditions to them – which isn’t fun since we’re sick already – or follow them around whimpering for their approval. We can even become angry and bitter about their lack of it. Or we can leave them be, understanding this very important truth: We are not responsible to keep everyone from thinking the wrong thing. If someone wants to be judgmental and think we’re faking it or whatever, that is a problem between them and God, not them and us.”

“Please don’t apologize for what your body needs. Most people like to help, they just don’t know what you need. And God blesses people when they help others, so you’re actually providing opportunities for a blessing for them.”

How about you? What do you think? Let’s talk about it.

Group Study Questions

1. Do you feel a sense of guilt that your condition is not obvious enough to warrant everyone’s belief?


2. Do you find yourself responding with:
– Defensiveness, ready to argue?
– A need to prove to everyone how bad it is?
– Sensitivity – they shouldn’t have said that?
– Pity party – nobody understands?
– Hiding and avoiding anyone who doesn’t get it?


3. Again, do you think if you had a sense of confidence about your condition, it would transfer to those around you?


4. Do you think we are responsible for what people think of us? If so, to what extent?


5. How does not communicating what we need lead to misunderstanding?

Activity

Find a loved one or friend who has a stable, solid personality. Ask that person if they will help you see clearly when you are struggling. If they are willing, those times when you are worried about what someone might thnk, call your friend, tell them the situation, then choose to believe them if they say that person’s feelings are not your responsibility.

This entry was posted on August 28, 2019. 1 Comment

Sick & Tired : Chapter 6

“When the Well-Meaning Annoy You”

Preparation: Read Chapter Six this week.
After reading, begin answering the questions at the end of the chapter. I will list the questions at the end of this post. We invite you to share your insights and experiences, and how you responded to the questions. We will encourage one another in the process. You may have chronic illness(es), but you do not have to bear them alone. Let’s be here for one another.

Note: Except for quotes in italics, words in the post are Marie’s.

Over the years I’ve spoken with many chronic illness sufferers. There is a common bond among us, a common language, a common understanding, even when we experience widely varied illnesses. We “get” each other. We also understand one another’s widely varied symptoms of pain, isolation, fatigue, sleeplessness, brain fog, and more. In addition, we know the experience of being misunderstood or not believed when we have made the effort to explain what is happening to our bodies.

On the other hand, we all know well-meaning healthy people who genuinely want to help us, but they don’t understand. We have all have heard “helpful” platitudes similar to these:

“But you don’t look sick!”
“Oh, I understand! I’m tired, too.”
“It must be nice not having to work.”
“Have you tried such-and-such a diet/exercise/pill?”
“All things work together for good.”
“God will not give you more than you can handle.”
“Just be positive, you’ll get through this.”
“There are a lot of people worse off than you.”
“Illness is caused by stress. You need better coping skills.”
“If you prayed and believed, you would be healed.”

No wonder we answer “I’m fine” when asked how we feel!
Here are some of Kimberly Rae’s comments on the subject of well-meaning friends:

“The truth is, there are some days I don’t want to hear the right answers. I already know the right answers, but I’m so tired…so very, very tired. and I’m tired of being tired. I’m tired of being so out of control – of not being dependable anymore. I’m tired of having to fight and fight every day in a war I know I can’t ever fully win.”

“Those times, it’s almost as if I’m tired of being strong and I just want to be miserable for a little bit. I feel yucky physically and I’m tired of the energy it takes to not feel emotionally yucky too. “

“I’m going to give you my theory on the yucky times…The two most obvious options are to stuff the feelings or go with the feelings. Neither choice works out very well.

“It goes back to the accepting and adapting idea. First I need to accept that I feel this way – to God, my husband, or a good friend. Just saying it out loud has healing properties in it. Then I need to adapt to the situation.”

“I get away by myself and focus on something else, and somehow just a small break of a couple of hours makes a huge difference…Giving yourself some kind of a break from the stress is a coping mechanism. It doesn’t mean you can’t handle your condition, or you’re a failure. It means you’re human and you sometimes get overwhelmed by a problem that never goes away.”

Let’s talk about this topic. Tell us how you feel. We understand.

Group Study Questions

1. What phrase do people say that gets to you the most?


2. Why? What do you feel it implies about you or your condition?


3. How do you want to respond? In your flesh? Be honest.


4. How do you usually respond (outwardly)?


5. Do you feel it’s wrong to admit you are feeling frustrated with you condition? Why or why not?


6. What would feel like a break to you?


7. Who can help you get a break? Would they be willing?

Activity:

Give yourself permission to take a break sometime this week. When you do, enjoy it without guilt.

This entry was posted on August 19, 2019. 1 Comment

Sick & Tired : Chapter 5

“Running the Yellow Light”

Preparation: Read Chapter Five this week.
After reading, begin answering the questions at the end of the chapter. I will list the questions at the end of this post. We invite you to share your insights and experiences, and how you responded to the questions. We will encourage one another in the process. You may have chronic illness(es), but you do not have to bear them alone. Let’s be here for one another.

Note: Except for quotes in italics, words in the post are Marie’s.

Okay, ‘fess up. How many of you have taken on way too many activities when you were feeling better, only to pay later with pain and disability? Guilty here.

Most of us have heard of the Spoon Theory by Christine Miserandino. She narrates a personal story and analogy of what it is like to live with sickness or a disability, and uses spoons to explain how people with chronic illness have to make choices about our activities, based on our store of energy.
You can read Christine’s “Spoon Theory” here:
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Even when we KNOW the cost ahead of time, we still want to ignore our energy levels and pretend, for a time, that we live normal lives with freedom to participate, serve, travel, host, vacation, shop, handle housekeeping responsibilities, school activities, and so on. These are the things we used to be able to do with ease. So we may choose to spend ourselves at the cost of our health. And that cost can be exhorbitant in terms of pain and suffering.

So what should we do when we are at the intersection of deciding whether to push through the warning signals our body is sending, or slow down and consider the cost. How about you? What do you do?

In chapter five, author Kimberly Rae speaks of these warning signals as “Yellow Lights”.

“I can’t tell you the number of times I’ve chosen to ‘push through’, to keep going and hope my symptoms somehow fixed themselves, or I’ve mentally argued with myself, trying to decide if I’m making it up, trying to get attention, or just jumping the gun before things really needed to be dealt with.”

“I am now at the point where, when I see a yellow light, not only do I slow down, but sometimes I even pull over to the side of the road – symptomatically speaking – so I can make sure the brakes work before I get to the intersection.”

“My point is, our bodies were made with a phenomenal amount of intricate and amazing functions, and when one, or several, of those functions stops working as they should, the body very resourcefully gives us a message. The message is usually in the form of something unpleasant, like pain, to let us know something needs to change. Something is wrong. If we ignore these warning signs, the body will send more and more signals, more and more pain, until something important shuts down and we have big-time problems.”

“In the same way, symptoms should be respected. They are trying to help us effectively respond to what our bodies need at the moment. Don’t ignore them. Don’t hope they will go away on their own. Just slow down and stop if need be, until you assess or deal with the problem.”

Group Study Questions

To make reading easier, kindly refer to the question number when commenting.

1. Are you a risk taker by nature, or more cautious?


2. When you feel symptoms, which way is closest to your natural reaction?
– Ignore them and they’ll go away.
– Anger this is happening and refusing to respond to the symptoms.
– Panic that a serious and dangerous problem is coming.
– Pop a pill and move on.
– Jump on the internet and do research, or call a doctor.
– Medicine fixes everything – give me more.


3. Do you think symptoms are a good thing? What might happen if we didn’t have any?

Activity:

Start a record of your different symptoms. A calendar is a good way to record how you’re feeling and when. Mark how you dealt with them and the result. Then the next time they happen, you can go back and check what worked and what didn’t.

This entry was posted on August 13, 2019. 1 Comment

Sick & Tired : Chapter 4

“It’s Not Fair!”

Preparation: Read Chapter Four this week.
After reading, begin answering the questions at the end of the chapter. I will list the questions at the end of this post. We invite you to share your insights and experiences, and how you responded to the questions. We will encourage one another in the process. You may have chronic illness(es), but you do not have to bear them alone. Let’s be here for one another.

Note: Except for quotes in italics, words in the post are Marie’s.

Let’s be honest. Is there any one of us who hasn’t said “It’s not fair!” when thinking about our chronic illness? If we haven’t said it aloud, we probably have felt it in our thoughts and emotions. Some people seem to glow with good health, strength, and energy. Why, then, are some of us burdened with accumulated diseases, weaknesses, handicaps, limitations, and sufferings?

This takes us right back to Job, the Biblical model of suffering. Job was certainly verbal with his feelings about the unfairness of God!

Read Job 30:20-23:
I cry out to you, God, but you do not answer;
I stand up, but you merely look at me.
You turn on me ruthlessly;
with the might of your hand you attack me.
You snatch me up and drive me before the wind;
you toss me about in the storm.
I know you will bring me down to death,
to the place appointed for all the living.

Job actually asked God to come and explain His actions concerning his miserable life. Instead, God asked Job if he understood how the world works, or how to take care of it and keep it running. Job was left in a place of humility. He never did learn why he was suffering.

Most likely, in this lifetime, we may never know the reason for our chronic illness and suffering. Like Job, we see from a limited perspective. If we could see the whole picture of what God manages, perhaps we would understand why we are suffering.

In the meantime, we have several choices in how we respond to our suffering. We can say, “It’s just not fair!” or we can choose a better way. The choices we make will be determined by our faith, our attitude, and, like Job, our humility.

Here are some of Kimberly Rae’s thought about choices we can make:

“The way I see it, anyone unfortunately ushered into the world of chronic health problems has three choices:

1. Refuse to Accept It – Run away from the reality in protest, hide from people, complain, get bitter.
Result: You and everyone around you becomes miserable, and it still doesn’t make the problem go away.

2. Accept but Don’t Adapt – Decide to live with this new condition, but don’t change any habits.
Result: You end up even more unhealthy, you begin to feel like a victim and see yourself as helpless, and you and concerned loved ones are still miserable, but more of a confused miserable as opposed to an angry miserable.

3. Accept and Adapt – Recognize this is your new world and try to learn how to live well within it. You change things – some big, some small – to make the everyday struggles easier.
Result: You likely will never love having a health condition, but you will learn to live with joy within the condition.

So what do you think about these choices? Share your thoughts with us. No judgment here. We understand.

Group Study Questions

To make reading easier, kindly refer to the question number when commenting.

1. Do you believe your attitude is your own choice? Why or why not?


2. What would you say your attitude was when you first started having problems?


3. How would you say it is now?


4. Do you know someone who has chosen to become bitter about life’s disappointments? How do you feel being around that person? Does this attitude make anything better for the person or their loved ones?


5. Did you go through a stage where you accepted your condition but didn’t adapt? Are you in that stage now? Do you see how this is good, but not good enough?


6. How do you get from just accepting to accepting and adapting?

Activity

Find someone you trust and tell them about the three choices. If you are willing to hear the truth, ask that person where they see you right now. You may learn some things to help you move forward, or be reassured you are on the right track.

This entry was posted on August 5, 2019. 1 Comment