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Lene on learning from chronic illness

Plotting to take over the world pales in comparison to balancing life with a chronic illness.

Plotting to take over the world pales in comparison to balancing life with a chronic illness.

 

Living with a chronic illness — any chronic illness — is an excellent teacher. It may not be a learning environment most of us would choose, but once there, living through the experience can teach you some important new skills.

Balancing everything that goes into living with a chronic illness is a full-time job. You're keeping track of the right amount of medication to manage your symptoms, while making sure the side effects are down to a dull roar. Added to that is paying attention to how much rest you're getting compared to your activity level. Another ingredient is balancing your diet, not just to stay healthy, but also to help with certain side effects. If you have pain, you have to pay attention to rest, medication (dose and interval), treatments to help with pain and finding the right pillow to support parts of your body when you do finally get into bed. And don't get me started on the balancing act of being a frequent flyer in the healthcare system — there are labs, appointments with multiple specialists, physical therapists and other supporting players and the list goes on. It's no wonder that people who are new to inflammatory arthritis have the urge to curl up in a fetal position in a corner.

The good news is that over time, it all becomes second nature. Once you're through the first year, you sort of hit a groove. Life may not be a dance on roses, but you're starting to figure it out. A couple of years in and you got the mad skills of a master project planner. Plotting to take over the world pales in comparison to balancing life with a chronic illness. You're balancing everything, instinctively keep track of meds, rest, your body's messages and scheduling the miscellany of appointments and it all more or less works.

Until someone or something throws a spanner in the works.

I have a slight problem saying no to interesting things and as a result, I'm somewhat overcommitted with wonderfully fascinating projects. It requires a lot of energy, something that's a bit of a challenge between the chronic fatigue that accompanies RA and fibromyalgia. One of the essential tools in my bag of tricks is biweekly vitamin B12 shots. Without them, I wouldn't have the energy to do what I do.

Two weeks ago, I went to my pharmacist to get another vial of cyanocobalamin (the fancy name for B12) and was told they were out. Not only was my pharmacist out of stock, so was every other pharmacy in the neighborhood. It turns out that there is a B12 shortage.

And that's when the panic hit. Because without B12, I have maybe half the energy I do now. Although, calling it energy is a misnomer. As many of you reading this know from first-hand experience, living with RA and fibromyalgia means carrying around an overwhelming fatigue. Not only do you feel as if you're physically dragging yourself through molasses, but your mental sharpness suffers, too. And there's no way I can meet all my deadlines with both my mind and body lagging. An exhaustive funds of pharmacist in my immediate neighborhood came up empty. Then I talked to my doctor and thankfully, she has a bit of a stash. So does my naturopath. There are also other options, such as sprays and tablets. I should be okay.

Regardless of what the spanner is — a drug shortage, a flare, extra stress at work — keeping your carefully organized system on an even keel is essential. Your ability to keep going depends on all its individual components staying balanced. But every now and again, life throws you a curveball and you go into crisis management mode. First you panic, then you activate your mental list of every connection and workaround you know when you start solving your problem. Because that's another important skill chronic illness teaches you: thinking outside the box. You are the master project manager with the kind of resources a White House crisis team would envy.

Now, if only the University of Chronic Illness would issue diplomas, we'd be shoe-ins for all sorts of important jobs…

Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain

 

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