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.
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.
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 back in bed sometimes for days or months at a time. Click To Tweet
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.
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. Click To Tweet
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
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.
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 music performances has proved impossible and I’m devastated about it. I never thought I’d lose the ability to be on stage. When I wrote this article, I was resting hard to perform in a show. I was worried about work and rehearsals. Now I can’t do it at all.
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.
*Weddings are impossible. I hate to make the choice not to go, but it’s always the best decision.
All of these things have 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.)
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:
- How many flights of stairs will I have to climb?
- How much walking will I have to do?
- Is there a shorter route that I can take that will make things easier on me?
- Do I need to bring a cushion because I’ll be sitting on a hard chair?
- Will there even be any chairs? (Standing events are impossible.)
- Do I need to carry anything with me? (I carry tiny purses now. We have a medical kit in our car.)
- Absolutely wear proper footwear. No bare feet or socks. I have house Birks that I bring if I’m going somewhere.
- 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.
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.