Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly – “listen to your body and pace yourself”. It’s a technique designed to help us manage our complex symptoms and restricted energy levels. But what if you find pacing challenging? What if your body and mind refuse to let you rest? This is the problem I face and I’ve been looking for ways to address this.
My poor body has been throwing out very clear signs that I’ve been overdoing it recently. Tremors, palpitations, migraines, muscle spasms, cold sores, headaches, increased pain, to name a few. My body is screaming at me to rest. I’m very in tune with my body and I’m fully aware that I need to rest. So why do I find it so hard?
For those of you who haven’t come across the term “pacing” let me take a moment to explain what it means.
What is “Pacing”?
The core principle behind pacing is that you work within your energy envelope. When you have a chronic illness your energy levels are limited and simple tasks can be exhausting. Therefore it’s important to manage the limited energy you have by spreading out tasks throughout the day or even breaking down bigger tasks to smaller ones, taking regular rest breaks, and most importantly listening to your body.
Why I find pacing so hard
It’s recommended that you rest before you reach you energy limit. This means stopping an activity you enjoy or one you’ve been meaning to do for days or weeks, before you get exhausted, even if you feel able to complete it. This is the part I find frustrating and hard to grasp.
I’ve never been a controlled and sensible person when it comes to my energy levels. Even when I was relatively well I would often have periods where I would push the boundaries of what my body and mind could take. Telling myself to stop and rest when I’m feeling relatively “ok” is an alien concept and my mind refuses to listen. “Just 5 more minutes”, “Just one more paragraph”, “I will finish this, then I will rest”, are all excuses my mind tells me.
But this is not surprising because the clear message portrayed in the media and enforced by society as a whole is to “push yourself beyond your limits”. Resting is seen as being lazy and we are encouraged to test our boundaries and constantly strive to do more. This is a message that can be damaging to those who suffer with a chronic illness.
See, the thing is with a chronic illness like ME/CFS we can often push ourselves to complete tasks but the payback is a bitch. We suffer, sometimes severe, deterioration in our health and increased symptoms if we push ourselves too far. The “crash” following increased activity can last for hours, days, weeks or even months. This is why pacing is so important, the stakes are so high.
This, to me, is a such a cruel aspect of ME/CFS and also an area which is the most misunderstood by people outside the ME/CFS community. People will see us carrying out tasks and assume we are ok, but they don’t see the consequences of our actions.
I think it would be easier if I COULDN’T physically do something, rather than being able to push myself to do something only to cause myself harm. It’s a constant battle between my body and my mind. It’s a balancing act between what I want to achieve in life and the limitations my body puts on these aspirations. I spend so much time weighing up each activity; Is it worth the payback? How much energy will it use up? Are there more important things I need to save my energy for?
And here’s the kicker; you may complete the same task multiple times over years and the payback each time is different, sometimes mild, sometimes severe. Just because you could do that task last week, doesn’t mean you can today. We never really know how our bodies are going to react.
But resting is boring!
When I have lots of exciting projects on the go, or I have friends visiting or my loved ones need me, I find it almost impossible to calm my mind and put everything aside to rest. I find it difficult to switch my brain off and concentrate on giving my body the time it needs to heal. And the physical symptoms of my illness like pain, muscle spasms and palpitations create another hurdle. My body is in a constant agitated state.
But it’s not just that. Resting is boring! There are so many other things I want to or need to be doing. I know rest is vital to give my body and mind time to recharge and renew, but it feels like such a waste of my life.
It’s not your fault you are ill
If you also find pacing hard please don’t beat yourself up about it. Our minds and bodies are designed to be kept busy. We crave activity and interaction. I used to blame myself when my health deteriorated as it was often because I had pushed myself too far. But this isn’t a weakness and it’s not my fault my body is broken, just the same as it’s not your fault. Try to work with what you have and rest when you can. The added guilt and frustration triggered when we blame ourselves just adds to the exhaustion we feel, and the severity of the “crash” we experience.
How do you pace yourself?
Just because I find pacing difficult doesn’t mean I don’t try. I know very well the principles of pacing and what I “should” be doing. I just struggle to find the motivation to rest. I find “doing” easier than resting. Pacing and resting take discipline.
I do however find mindfulness meditation a useful tool when I want to calm my mind and focus on my wellbeing. Meditation is a simple and effective way to steady the mind, give clarity to your thoughts and help you to manage stress. This could be in the form of a structured ‘body scan’ or a guided meditation using an app, or simply practising breathing techniques. It’s the most effective method I have found for calming my overactive brain enough to allow myself to rest.
I could talk you through standard pacing techniques but as I’m crap at pacing myself it seems a bit hypocritical. So instead here are some links to excellent articles written by fellow spoonie bloggers, that give practical advice and simple techniques that will hopefully assist you in your resting life.
Practical pacing tips from fellow spoonie bloggers
10 Top tips for pacing when you have fibromyalgia. By February Stars.
To do or not to do? That is the real question. By My Med Musings.
The Importance of pacing and fibromyalgia. By Counting my spoons.
Free ebook download including practical pacing techniques. Take Back Your Life & The Fibromyalgia Coach. By Tami Stackelhouse
You may also find this article useful. Pacing with Fibromyalgia & Chronic Fatigue Syndrome.
But the truth is simple; I’m just doing too much and my health is suffering due to this. I need to try and back away from the stresses of life and prioritise rest and pacing. I’m fully aware of the importance of rest and I know many techniques that help with pacing, but I’m not giving myself time to practice them.
Therefore, I’m going to be taking a bit of time off from my blog. It could just be a few days or maybe a couple of weeks. Knowing me I won’t be able to stay away for long but please bear with me while I take the time to heal. Take care x
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This is so accurate. My #1 complaint about pacing is that is makes life boring!
I have the exact same problem as you…when I start something, I tend to become obsessed with it and ignore everything my brain and body is screaming at me, until I actually feel unwell. It’s really dumb, but I struggle with it even though I’m aware it’s a problem! I hope you have a good rest away from your blog for a bit. Can’t wait to read your next post though, love your writing 🙂
Thank you Sheryl.
I love your honesty. Pacing is so tough. I try to keep up with the rest of the world, but then I just get more exhausted and in a flare-up. Sometimes I set timers, other times I remind myself if I take breaks I will achieve more than if I don’t and end up in bed. But, it is hard to stop a project when started. Good for you for taking the rest that you need! will be thinking of you.
Thank you Deborah. I will try your tip about setting timers.
Pacing is difficult when you are dealing with the illness completely on your own. No partner to help with the chores, cook the meals, deal with the bills and utilities, sort out household repairs as well as a multitude of other day to day tasks that form part of running a household. Throw into the mix a parent with dementia on the other side of town who can no longer handle finances and shopping and I soon found myself running two homes and two lives. Pacing? There aren’t enough hours in the day to allow for rest periods. Things need to be done and I refuse to lose my grip on keeping on top of things. So far, I’m surviving – just. Pacing looks good on paper but unfortunately life gets in the way.
I’ve had ME since ’87. Since turning 61 a year ago, I have an extra layer of problems. My energy envelope gets smaller and smaller no matter how much I pace. I believe aging adds to our misery. There are times when I feel I have to finish something (eg. run too many errands) or it will never get done and I pay the price, but then again if I have to break it up into multiple tasks, I pay for it in another way because it’s prolonged and I have to schedule more rest days in between them. It’s true that you never know what will cause a crash and that’s the hardest thing to accept.