Coping with Chronic Illness

Maintaining balance as a #spoonie

"I think I get to a point where I find a happy balance and then something else sets my health issues off and everything goes haywire and I can’t get my body back on track regardless of what I do."

Read the full article by Sandy at FightingFatigue.org.

This is me this week. This is me right now. I've been having a rough time of it and I can't seem to get through this flare because it seems that every single day something else happens that pushes me right back to where I started. Tonight I'm debating with myself over whether or not I should attend a class tomorrow morning and I think I'm going to have to accept that I shouldn't because if I do it's going to set me right back to where I was at the beginning of this flare and all my recovery will have been for nothing.

In a way, I've become ruthless in my prioritizing. Today I did nothing. I turned off my phone, didn't check messages or answer emails, I just rested. I had to because for the past week I've been neglecting my healing in favor of achieving and all I really achieved was a harder, longer flare than before. I'm even getting past the guilt for not being always available, much as people seem to expect me to be. Sometimes things can't be dealt with in one day. Sometimes they can't even be dealt with in one week. 

Other times I think I show a complete disregard for my health. As soon as I show the slightest improvement my instinct is to jump right back into things. For instance, I was very nearly doing math homework at midnight tonight because it was the first time I've felt well enough in days. That isn't good for me. That sort of behavior will knock me down and leave me in bed for days.

It's a process, right? I hope it's one I can learn to navigate.

Pacing.

How many times have you had a good day only to drive yourself right back to bed by completely overdoing it and tackling everything on your to do list and then some? One of the great ideas [Diana Lee] learned about at The Lemons Center for Behavioral Pain Management is pacing. The idea of pacing is to stay within a reasonable range of pain and exertion at any given moment so you don't drive yourself toward a crash. The way The Lemons Center illustrates this is by an idea they refer to as "checking your gauges." Just like when you're driving a car and monitoring the gauges on the dashboard for speed, fuel, oil and other messages the car gives you, pay attention to the messages your body gives you.

On a scale of 1-10 rate your pain, fatigue and emotional state in that moment (these numbers can change rapidly).

• 1 - 6  Continue your activities; keep checking your gauges.
• 7-9   Slow down; keep checking your gauges.
• 10    Stop and take care of yourself

Keeping track of your numbers can be helpful in tracking patterns in your pain, fatigue and emotional health and for illustrating your symptoms and their impact for your doctors. Checking your numbers also keeps you honest about how you're actually doing. As sick people we often tend to minimize our symptoms, which doesn't do anything to help how we're feeling.

[Somebody Heal Me]

“Practice the pause.”

We don’t have to stop or move forward. We don’t have to make any decisions. Take a few days, a few weeks, or a few months; let things percolate; listen to our guts, bodies, and smarty-smarty friends; and see what direction the Universe takes us in next. Because if we don’t practice the pause when we need to, life as we know it may come crashing down around our feet.

[Dancing with Pain]

Spoon Theory & Spoon Ratings

Spoon Theory by Christine Miserandino at ButYouDontLookSick.com

This might be the most important thing the friends and families of people with chronic illnesses should know.

A Balancing Act: How I'm managing the daily currency of spoons

My husband, Simon, hit on the idea of developing a series of Spoon Ratings, whereby I’d rate each of my activities according to the number of Spoons they’d use. He went on to speak about something else but I couldn’t take it in; my mind was racing, a Spoon rating system! I quickly realized that using this system; I could develop a far clearer picture of what I could and couldn’t do in any given day or week.