Today’s post is about chronic illness and pacing for pain management, and since today – September 28th, 2015 – kicks off Invisible Illness Awareness Week 2015, I thought it might be the perfect time to explain what pacing is, and why it’s important to people who are chronically ill, like me.
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 Chronic Fatigue Syndrome, and most recently in February 2017 with CRPS (Complex Regional Pain Syndrome).
Follow the link to read more about my invisible illnesses.
These are the meds and supplements I have to take each week to keep my immune system in check. I will be on them for the rest of my life. This is my invisible fight. I am fighting for awareness.)
Pacing 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.Every single chronically ill person knows the importance of pacing, and they also know the importance of saying no and setting boundaries. Click To Tweet
It can be tough to say no, though, and it is really 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, and while it might look that way on Facebook, the reality of my life is far from it. You can’t tell from my Facebook activity that I’m flaring right this second. 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.
Luckily, I am a natural planner. My friend Hannah calls me Carrie “has a plan’ Kellenberger. I don’t know if this is a good thing or a bad thing, but for me health-wise, it’s certainly important that I plan each day out by trying 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.
Most times, it’s bad enough that I can’t hold my upper body up, and the fatigue makes it impossible to get out of bed. Plus I get a host 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 unbelievably easy for me to surpass my energy levels, and then I end up right back in bed – experiencing all of the above – sometimes for days or months at a time.
Earlier this month I wrote a post about how good I’ve been feeling lately, which is true – I’m better than I was.
Now that I’m feeling a little better, of course I want to catch up on all the things I wasn’t able to do when I was feeling awful. It’s natural for anyone to do this, but the unfortunate thing with my illnesses is that catching up and doing more lead directly to more bed rest.
This is known as a boom and bust cycle in the world of the chronically ill, and it is a cycle of life that I haven’t quite figured out yet.
I have to pick and choose what I can do each day. My activity levels never really improve, despite the fact that I continue to try and improve them. If anything, more activity makes me worse. One productive day can lead to two or three days in bed.
Plus I hate to think of people thinking that I’m lazy because I don’t get involved with physical activities. You know that person who doesn’t chip in when everyone else is? That’s me, and I’m acutely aware of it any time we’re out. I’m pretty sure I overcompensate by doing more than required in other areas of my life, but that’s a different story.
This is really tough for me to accept because up until last year, I’ve always led a fairly active lifestyle.
My dad is a coach; I grew up on sports. Not being able to go out and run or dance or go to Zumba class are things that I try not to think about too much anymore. Those days are gone, gone, gone.
- I avoid stairs like the plague. Nothing tires me out quicker.
- Standing for long periods of time is torture for me.
- Sitting for long periods of time is also torture for me.
- Simple household chores that most of you take for granted are difficult for me, and they drain my energy levels really quickly. For example, I make sure that all of the bedding and towels in the house are clean each week, but making the bed isn’t an easy task for me to do. It’s John’s job now.
- Mopping floors is out of the question. Carrying heavy loads of laundry or the simple act of bending to collect wet laundry to hang is really hard for me, so we each do our own laundry. I space out the household chores throughout the week to avoid spending too much energy on one single day.
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 quite a few eye rolls and snarky comments, but as my health has gotten worse and he has seen the toll that physical activities (and stress) take on me, he has become more understanding and a stronger advocate for me and for my health.
Naturally, anyone would be this way at first. I can’t imagine how he feels about all of this, but I can imagine that it is really, really hard on him.
One of the things that has been really hard for me to deal with this year is to say no to an event or to cancel at the last minute.
Some days I push through events or activities when I know I shouldn’t.
A few weeks ago, for example, wedding festivities began for a good friend of mine that culminated in a fantastic superhero bachelorette party and a weekend wedding celebration at the beach.
These two events, despite preparing ahead as much as possible, really set me back health-wise. I knew I wouldn’t be able to do it all without paying for it. I spent most of the following week in bed, but it was worth every second.
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.
This week, I will be resting up for a big show that I am performing in on Friday night. I am worried about how I’m going to handle work and practices this week.
Luckily, it’s a holiday in Taiwan today, so I’ve been able to rest for three days. I hope it is enough rest to get me through until Friday night. I already know that I will be recuperating in bed next weekend.
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 and I have to know my limits. For example, I know which activities impact me the most and I know that I have the most energy from 11am to around 5pm, so I try to plan my activities into this timeframe. 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 generally stick to doing just 2 or 3 activities each week. I work from home, so when I talk about doing 2 or 3 activities, 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.
These are some of the questions I ask myself as I’m thinking ahead for each activity:
- 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 pure torture for me. Someone needs to help me out if I have to sit on the floor.)
- Do I need to carry anything with me? (I moved to tiny purses a long time ago. You’d be surprised what I can fit in there for necessities.)
- What will I wear on my feet?
- How much medication do I need to bring with me to get through X amount of time?
Working from home allows me some freedoms, but not everyone has that luxury. I have plenty of chronically ill friends who can’t even 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.
#AnkylosingSpondylitis #Fibromyalgia #CFS #invisibleillnesses #autoimmuneillnesses #healthadvocacy
Here are some additional resources for pacing for pain management that you might find helpful.
- Princess in the Tower is one of my favorite blogs. Princess has Complex Regional Pain Syndrome, also known as CRPS. Here is an article that she wrote about pacing for pain management.
- CFIDS & Fibromyalgia Self- Help: Pace Yourself – A non-profit organization offering low-cost online self-help courses and other resources for people affected by Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM).
- Pacing 101 from Chronic Fatigue About.com