Sick & Tired : Chapter 8

“The High Cost of Going…Anywhere”

Preparation: Read Chapter Eight 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.

One of the most common side effects of chronic illness is isolation. In my own life with Multiple Sclerosis, I have found that I isolate myself more and more as my disease progresses. It’s not because I want to avoid people, or that I no longer enjoy activities. The key reason is the enormous energy cost of leaving my home for any activity.

For example, a simple 20 minute medical appointment only 3 miles from my home involves some major planning and physical costs. I try to schedule all my appointments in the early afternoon, because mornings are hard. I have to drag my achy body from my LaZBoy power recliner where I have to sleep, because constant muscle spasms require me to frequently change position during the night. I awake with my low back and my lower legs in spasm. It takes at least an hour to put on very simple makeup, and to dress in jeans and a button-up shirt. During that hour I have to use the restroom at least twice. After making myself eat food that I don’t really taste, I am ready to start my morning.

To prepare for the appointment, I need to make sure I have extra bladder control pads in my bag, my medical bracelet on my wrist, a bottle of water because my medications make my mouth dry, a small flashlight in case I am in a shadowed area where my low vision is problematic, a folding fan in case I get overheated, two pairs of eyeglasses for my double vision (one for reading and one for driving). I need my arm crutch to walk to my car, and my scooter to ride into the medical building after I find a handicap parking place. I will have to enter and exit the elevator, and then check in at the desk. After climbing up on the exam table, answering all the questions that require concentration through my brain fog, I then have to do all the above activities in reverse. Oh, I forgot. I will also probably have to find a restroom at the medical building before and after the doctor visit. When I arrive home, exhausted, I need to rest. Heat exacerbates MS symptoms, so if the appointment is in the Summer, all symptoms are heightened.

All that for a local appointment. It’s even harder if a special family event is across town. The 45 minute drive may require a restroom stop, and depending on the notorious Indianapolis traffic, it could take up to twice as long. I want to interact with everyone, and enjoy the food and company for several hours. It may take me days to recover. I have to plan ahead. I have learned that I may be able to do two, possibly three, trips away from my home each week. Sometimes I don’t leave my home for two to three weeks at a time.

How about you? Do you have to plan your calendar around your chronic illness symptoms? I think we all understand Kimberly Rae’s comments below:

“It’s annoying to do all you have to do to get out there into the world and be with people, and sometimes it doesn’t feel worth the effort.”

“Part of the problem is risk. What if we have a flare-up at someone else’s house? What if we commit to some event and end up falling apart right in front of everyone?”

“What’s my point? We have a choice to make on how much we will avoid in order to make life safer or easier for ourselves. it is definitely wise not to overdo it just to prove we’re not really sick after all. We are sick, so it’s silly trying to prove we aren’t, however, we shouldn’t decide to avoid everything simply because it’s too much trouble, or it feels too risky.”

“We sick people can’t live spontaneously, that’s for sure. We have to plan ahead for a lifestyle that fits within our limitations, and then prepare fully to have all the stuff we need to live that life, complete with a few just-in-case additions.”

Tell us how you cope with going out. Can you really have a spontaneous activity without cost in terms of chronic illness symptoms?

Group Study Questions:

1. Do you get frustrated at the lack of spontaneity in your life now that you have a chronic illness?


2. Which settings are most difficult for you?


3. Are there fun settings where you can enjoy yourself despite your illness?


4. Can you shift your schedule to do less of the difficult and more of the fun?

Activity:

Write a list of what you need to bring for certain activities. If you have different needs for different types of activities, write one list for each. Keep the lists available so you don’t have to think through what you need every time an activity comes up.

One thought on “Sick & Tired : Chapter 8

  1. 1. I do occasionally get frustrated at my inability to participate in spontaneous activities. Every single activity requires planning, checking weather, considering my energy at the time, and being aware of what it will cost me in terms of pain for the future days after the activity. My frustration directly correlates to the importance of the activity to me.

    2. Weather is a huge factor. MS does not tolerate heat, or cold for that matter. Changes in barometric pressure will cause symptoms to flare up. I ask myself important questions. How long will the event last? How far will I need to travel? Another big consideration is the setting. Will I be able to navigate the terrain on my scooter? How many people will be there? How will food be served? Will I have to walk through a line? How far will I need to walk from the line to where I will sit? How far away is the restroom?

    3. I enjoy smaller family gatherings that take place inside a climate controlled setting, where I won’t have to walk far, and where I can be relaxed with people who understand my limitations.

    4. It is not a matter of shifting schedules for me. It is a more about how painful my MS symptoms are at the time of an activity. I often schedule an activity in my planner and look forward to it, then have to cancel because of MS flare up. There is always a sense of disappointment and even guilt when I have to explain and offer excuses for not attending.

    ACTIVITY:
    I have a particular a shoulder tote bag that holds my everyday needs, and a weekender quilted tote that holds overnight needs. I have lists for each, so I don’t forget important items.

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