Chronic Illness – Pacing For Pain Management [Updated 2020]

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.

This post was published on September 28, 2015. I update it every year as I get further into the process of pacing for pain management.

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: 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 sluggish and suffer from extreme muscle weakness.

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 migraines, nausea, and anxiety from my symptoms and medication side effects.

If I don’t pace myself and stay aware of what I’m doing, it’s 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.

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I’m sick most of the time now with a few so-so days each month for doing something outside my home. If I know I’m going out for a while, we take my wheelchair.

Carrie Kellenberger - Living with AS and Fibromyalgia / MECFS
I use a wheelchair to help conserve energy. Once I hit 3,000 steps, I stop walking and rely on my chair to do the rest of the work for me.

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

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 was still learning about in 2015. Now I know it inside out and I know that if I’m planning something, I need to prepare for the bust! 

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

I’ve followed these rules with pacing for pain since 2014:

  • I avoid stairs because they burn through energy 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 reserves

Disability 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, my husband 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.

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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. It takes too much of a toll on my health.)

A few examples of things I couldn’t properly pace for:

 

When I was working with the Canadian Chamber of Commerce in Taiwan, I had 3-4 meetings per week, plus my full time job with my own business.

Trying to keep up with all of it made me much worse and I eventually stepped down from that position because I couldn’t do it. Every time I left my house, I’d end up spending my weekends recovering in bed on heating pads with my cat and coloring books. 

Keeping up with performances has proved impossible. 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 for me to do that now. It makes me too sick. Losing your job and the things you love to do because your body won’t let you do them is devastating. We try to hold on as long as we can, but I’ve found that eventually, I have to let go.

However, this has made me wiser in choosing what I do with my time moving forward.

Here are some tips I’d like to share with you that have allowed me to keep going a bit. At this point, I am mostly housebound. I leave my house a few times a month, but I always plan on the following:

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 pay constant attention to what my body is telling me. I must 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.)

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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’m 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. 

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. 

A handy infographic of questions to ask yourself before leaving your home if you have to pace for pain management.
A handy infographic of questions to ask yourself before leaving your home if you have to pace for pain management.
Tips and tricks I've learned from living with chronic illness for pacing for pain management. Pacing helps me track my activity and maintain energy levels so I don't burn out and make myself sick. Learn more in my article on pacing for pain management at MySeveralWorlds.com

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions. 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. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for chronic illness by WEGO Health and Healthline. Twitter @globetrotteri Instagram at https://www.instagram.com/carriekellenberger/. I also have a dedicated page for My Several Worlds at https://www.instagram.com/myseveralworlds/. Each IG feed features different content.

12 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.

    Shruti Chopra

    (September 27, 2020 - 12:58 am)

    Hi Carrie… I really admire and respect you for all that you’re able to pace . It’s not easy and definitely may not always go to plan.

    Also, I love this topic because every time I read up about pacing I’m reminded to stick to it! I’m a planner exactly like you – whether it’s planning what I need to do while working from home, house chores and when I step out which is why I guess if my schedule is changed , it suddenly throws me off – it makes me sad, which it shouldn’t because it’s not like the end of world! But I think what many don’t get is that it means readjusting the mind and hoping the body will cooperate with it.

    Thank you for sharing your process with us 🙂

      Carrie Kellenberger

      (October 5, 2020 - 1:53 pm)

      Hi Shruti,

      It’s one of those things that means the difference between being able to participate and being sick for days/weeks. It’s essential and I must do it. I blame it on MECFS because at a deep level, this is a mitochondrial disfunction and it’s always made me sick if I’m not thinking ahead. The first person I learned from is Toni Bernard at Turning Straw into Gold on Psychology Today. I don’t know if you’ve read her books, but she really puts it into the right framework for patients like me who experience such awful crashes by going over energy limits just a bit!

      Keep on going! And stick with it! I’ve also noticed that every year it gets a little harder and that’s ok. It’s all part of the process. Or maybe it’s old age?! 🙂

    Alison

    (September 27, 2020 - 3:46 am)

    Carrie,
    I really appreciate this post! Pacing is so important and a skill that I am still working on! Recognizing what you can handle and what might precipitate a flare is really necessary, and a powerful piece of self-knowledge. Acting on that awareness also isn’t easy, nor is being kind to yourself about these decisions. I have slowly been building up my self-awareness and that self-knowledge, but still struggle with over committing myself or with failing to say no when needed (and the occasional times where I have said no and may have been able to be OK if I had gone.). Still working on it all. But, I think I am doing better than I had in the past, and I know that I am kinder to myself about those decisions. Second-guessing yourself is painful, and I am glad that I have minimized that now, with my pacing practice!

    Katie Clark

    (September 28, 2020 - 2:28 am)

    I really appreciate your unflinching wisdom, Carrie. This is very helpful. I’ve saved the infographic to print and post in my office.

    Chronic Mom

    (September 28, 2020 - 4:15 am)

    Great overview. I tend to think I’m terrible at pacing, but I also do all this planning in my head.

      Carrie Kellenberger

      (September 28, 2020 - 2:28 pm)

      I’m only terrible when I knowingly exceed my limitations. In this case, I know exactly what I’m getting into and what the payback will be. MECFS really complicates things. I can always push through an activity, but the result is terrible. I’ve never been able to increase over the past five years, so now I’m working hard at keeping that baseline from dipping below 3,000 steps per day. It’s an ongoing lesson for all of us, I suspect.

    Sheryl Chan

    (October 1, 2020 - 5:21 pm)

    So difficult to pace, isn’t it?! Love the infographic you made – it’s spot on. Every little ‘normal mindless’ thing needs to be planned.

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