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.
It 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.
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.
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.
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 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, 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.
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:
- 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. 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.
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.
- Princess in the Tower is a favorite resource. Here is an article that she wrote about pacing for pain management.
- CFIDS & Fibromyalgia Self- Help: Pace Yourself
- Pacing 101 from Chronic Fatigue About.com