Chronic Illness – Pacing For Pain Management [Updated 2020]

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This article offers information on how to keep track of your energy output and how you can work on pacing to keep your pain levels manageable.

Today’s post is about pacing for pain management with chronic illness and why it’s important to people who are chronically ill, like me.

Pacing for pain management is one way that I cope with chronic illness.

It is crucial to my lifestyle, and without some sort of plan in place for each day, my life can quickly spiral out of control.

Pacing for Pain Management - My Several WorldsIt can be tough to say no and it is tough to pace yourself in a world that is constantly on the go.

Someone said the other day that they thought I had a crazy schedule. While it might look that way online, the reality of my life is far from it. You can’t tell from my online activity that I’m flaring right this second unless I tell you. You can’t even tell I’m tired or in pain most days. This is one of the reasons why fighting for invisible illness awareness is so important.

Invisible Illness

When you’re chronically ill, you need to learn how to micromanage your life.

Luckily, I am a natural planner. I don’t know if this is a good thing or a bad thing, but for my health, it’s important to plan each day out. The trick is to figure out the exact amount of activity that I can do without causing a flare-up of symptoms.

A flare-up can last a few days or it can kick things off into a month or more of flare activity. If you’d like to know what a flare is you can read my article called: What is a Flare?

When I flare, it feels like my body has filled up with cement and I’ve been hit by a truck. The pain is a sharp, burning pain that radiates throughout my skeleton and muscles. I get really sluggish and I suffer from extreme muscle weakness. This is why pacing for pain is so important.Carrie Kellenberger Wheelchair for Ankylosing Spondylitis

Most times, it’s bad enough that I can’t hold my upper body up. Fatigue makes it impossible to get out of bed. I get a lot of other symptoms that are impossible to ignore, including extreme anxiety from my symptoms and medication side effects.

If I don’t manage my activity level and stay aware of what I’m doing, it is easy for me to surpass my energy levels. Then I end up right back in bed – experiencing all of the above – sometimes for days or months at a time.

This has been going on for five years now. I came out of remission in July 2014 and never got back to a decent place of health. This has has a profound impact on my life and I am no longer the person I used to be. 

I’m sick now most of the time with a few good days each month. Naturally I resist doing more on the days I’m feeling a bit better.

When patients start to feel better, they want to catch up on things they weren’t able to do. Unfortunately, if we follow through on this instinct, most of us will get sick again. More activity leads directly to more bed rest. This is known as a boom and bust cycle in the world of the chronically ill. It is a cycle of life that I hadn’t figure out by 2015, but I get it now and it’s very clear that I must keep every aspect of my life under control.

Again, pacing for pain is important because we have to pick and choose what we do each day. You can’t do it all.

Chronic Illness is Invisible

For the past five years, I’ve followed these rules of living with pacing for pain:

  • I avoid stairs because they burn through my energy so fast
  • No standing for long periods of time since it results in leg pain
  • No sitting for long periods of time unless I have cushions for proper support
  • No sitting on stools and chairs with no backs or hard back chairs
  • Maintain simple household chores. Example, I keep the bedding and towels clean, but John makes the bed
  • No mopping although I can still sweep each day for short lengths of time
  • Keep an eye on carrying heavy loads of laundry and bending over to hang wet laundry
  • Space out chores throughout the month to manage energy reservesDisability and Dermoskeleons

Having a pacing plan for my lifestyle is extremely important for me if I want to live successfully with my diseases.

When I first became ill, John didn’t understand how hard it was for me to do these things. There were a few eye rolls and snarky comments. As my health got worse and he saw the toll that physical activities (and stress) take on me, he has become more understanding. He has also become a strong advocate for me.

I can’t imagine how he feels about all of this, but I can imagine that it is really hard on him.

One of the things that is always hard for me to deal with is saying no to specific events. I also hate canceling at the last minute, but it can’t be avoided. 

Some days I push through events or activities when I know I shouldn’t. (This happens rarely now because it takes too much of a toll on my health.)

A few weeks ago, for example, wedding festivities began for a good friend of mine that culminated in a superhero bachelorette party and a wedding celebration at the beach.

Despite preparing ahead, these two events set me back health-wise. I spent most of the following week in bed, but it was worth every second. That was five years ago. Impossible now.Sam and Rocky's Beach Wedding9_n

Just last week, I had a business meeting on Tuesday, a Chamber event on Thursday and a friend in town for dinner on Friday. That was more than enough to set me back for the whole weekend. I ended up canceling on the bbq we were supposed to attend on Saturday and on the dinner plans we made for Sunday, and instead, I spent the whole weekend on heating pads in bed with my cat and my coloring books.

Luckily, my husband is a star. He went out and got food for us and he made sure he had lots of movies and shows for us to watch.

When I wrote this article, I was resting hard to perform in a show. I was worried about work and rehearsals. I’ve retired from entertainment since then. It’s impossible now.

Plan everything in advance.

When you’re chronically ill and you don’t store energy the way other folks do, getting through a full day is daunting. I need to pay constant attention to what my body is telling me. I have to know my limits.

Recognizing which activities impact me the most is important. I have the most energy from 11am to around 5pm. I try to plan my activities within these hours. I know how much mental exertion I can handle in a day before I need to shut things down, and I know my warning signs. (So does my husband. He tells me he knows by the look in my eyes.)

In 2020, I can handle one outing a week. Five years ago, I could do maybe four outings. I work from home, so when I talk about outings, I’m talking about activities that take me out of the house, such as business meetings, volunteer events, or social outings. I plan for short activity periods and plenty of rest. I also prioritize my tasks each day and I switch tasks if I need to. In 2020, I count myself as lucky if I can even leave my home twice a month.

These are some of the questions I ask myself when I’m pacing for pain management for specific activities: 

  1. How many flights of stairs will I have to climb? 
  2. How much walking will I have to do?
  3. Is there a shorter route that I can take that will make things easier on me?
  4. Do I need to bring a cushion because I’ll be sitting on a hard chair?
  5. Will there even be any chairs? (Standing events are impossible.)
  6. Do I need to carry anything with me? (I carry tiny purses now. We have a medical kit in our car.) 
  7. Absolutely wear proper footwear. No bare feet or socks. I have house Birks that I bring if I’m going somewhere.
  8. How much medication do I need to bring with me to get through X amount of time?

Working from home allows me some freedom, but not everyone has that luxury. I have plenty of chronically ill friends who can’t  work, so I count myself lucky for what I do have.

Having an invisible illness requires a complete lifestyle change and you can’t really understand it unless you are ill or you know someone like me. I hope this helps those of you out there that are suffering from illness and those of you who have someone in your life who is going through the same thing.

I remain forever more your steadfast and relentless Invisible Illness Health Advocate.

~Carrie

For those of you who are new to this site, I am a chronically ill Canadian expat living in Taiwan, and I have Ankylosing Spondylitis, Fibromyalgia, and MECFS. Follow the link to read more about my invisible illnesses

Here are some additional resources for pacing for pain management that you might find helpful. 

 

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian expat who has been living abroad in Asia since 2003. I moved from China to Taiwan in 2006. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. Follow Carrie on on Twitter @globetrotteri or on Instagram at https://www.instagram.com/carriekellenberger/.

5 thoughts on “Chronic Illness – Pacing For Pain Management [Updated 2020]

    Christina Lowe

    (October 2, 2017 - 8:37 pm)

    This is a fantastic article, I know all about pacing. I’m not very good at it, I don’t feel like, but I know all about it. For me it’s hard having a husband that works odd hours, and I have to get my son to all of his activities, and baseball over the weekend. That is really the hardest part of my struggle. It takes so long to recover from the long weekends on the ball field, in the sun, even if I’m under an umbrella, and have sunscreen on. With Ankylosing Spondylitis, and SLE Lupus, it just drains me. I end up with migraines and it seems like I am in constant flares during baseball season. I guess it’s the price I have to pay for my kid though lol, and you’re right it is a balance of deciding what to do, when, how much you can take physically, not to mention mentally. I love reading your perspective. ~ Christina

      Carrie Kellenberger

      (October 5, 2017 - 1:43 pm)

      Pacing is not working for me, Christina. My step count just keeps going lower and lower. I used to go and watch my husband play football and basketball, but I just don’t have it in me to do that anymore. Ankylosing Spondylitis has sucked all my energy from me. I just try to be as strict as possible with my plans if I’m going out for a few days, take my emergency kit with me, and answer all the questions in the post ahead of time so I know what to expect. My friends are getting used to me asking about stairs now. Sometimes they tell me ahead of time if they invite me out somewhere and try to make other arrangements for me. One of these days, I’m going to write about how unfriendly Taipei is for anyone who has issues with disabilities. Even if my husband wanted to use my wheelchair on the road, he’d have to push me ON THE ROAD because the sidewalks are not even. Any building under eight stories never has an elevator, which means having to climb eight flights of stairs, so that’s out. And I am just really surprised at the lack of thought that goes into planning certain venues that do not take the elderly or the sick into account at all. I can say that people love it when I visit their establishment because they want my reviews, but I’m not going to review a place if it’s hard to get to, and I’m definitely not going to climb to a rooftop restaurant just to check it out. We immediately dismiss those kinds of places as options, which sucks. There are a few restaurants I would really like to check out, and when I called to inquire, they said there was no elevator, it’s four to eight stories up and maybe they can send staff down to carry me up. Sweet, but no thank you.

    Vic

    (March 13, 2019 - 11:03 am)

    I love reading your blogs so much! I also have chronic pain and you really inspired me. Keep it up!

      Carrie Kellenberger

      (March 14, 2019 - 6:35 pm)

      Hi Vic,

      Thank you so much for stopping by and for your encouragement. I really appreciate it.

    Enrique Pasion

    (May 1, 2019 - 5:26 pm)

    A very inspiring article. You have just put me to shame because with all your conditions you are a trouper who keeps everything on an even keel. Not simple, I know and you should share how you do it. Thank you for this post.

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