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I often hear other chronic illness patients say they are trying to find their new normal. But what happens when your pain and symptoms change more often than the weather? The only consistent thing about living with a chronic illness is that it never remains the same! The chronic pain I experience with fibromyalgia, psoriatic arthritis, and endometriosis is never the same.
Pain levels differ hourly, daily, weekly, monthly, and yearly. Although the damage each illness has created cannot be undone, there is an ebb and flow to the pain and discomfort I experience from each one. And if having an ever-changing chronic pain level wasn’t frustrating enough, injuries, trauma, and stress take it to a new level.
For years, I was either living it up with low pain levels or flaring so terribly that there was no life beyond the pain. Wanting to stop living life on the end of a yo-yo string, I had to learn how to adjust to the changes. The first step was to accept my new normal.
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What is normal?
So what is normal? There is no normal. No normal is normal when you have one or more chronic illnesses. Adapting to higher chronic pain levels or worsened symptoms is necessary. There is no getting around it. With that said, don’t expect that change to last!
Living with fibromyalgia, psoriatic arthritis, psoriasis, and endometriosis has taught me to never get used to living one way. From the very beginning, no two days or months have been the same. It was extremely difficult to find my normal because there was nothing normal about having a body that never felt or behaved in the same manner for an extended period of time.
There are periods when I look and feel like a healthy individual. Some days require a mobility aid such as crutches or a rollator, while others demand the use of my power wheelchair. There are days when I can keep up with or even outperform my friends and family. Then there are days when just leaving the bed to use the restroom is a major accomplishment.
Why chronic pain changes
Understanding why my chronic pain changes, has helped me adapt. While it is impossible to figure out every trigger, knowing just a handful of them can make a huge difference. For example, I know that heatwaves that bring a 20-degree bump in temperature within a day or two will trigger swelling around my spine. I know how my body reacts to this symptom and can plan with it in mind.
Pain may increase when our bodies no longer respond to medication or pain relief treatment. Progression of some chronic illnesses includes higher levels of pain.
The truth is there are many things that can cause a disruption to your new normal. Other common chronic pain triggers include weather, stress, and the environment. Additional chronic illnesses, a virus, or physical injuries also have the ability to turn the tables upside down.
Adapt to change
For many years I struggled to adapt whenever something triggered a severe flare or when dealing with a new symptom or pain. Mainly because while in that moment, it is impossible to see ahead or imagine the pain letting up. A big part of adapting is accepting what is happening right then and there.
What friends and family thought was another reason adapting to change was difficult. Some believed that purchasing a mobility aid was a sign of giving up. That assumption is incorrect and dangerous to the person living with chronic pain. I wasn’t giving up or into my chronic illnesses when I received my first wheelchair. Instead, all I was doing was adding a tool that would allow me to keep moving when my body refused to cooperate. Without my mobility aids, I would have missed out on some of the most important and amazing moments of my life, or I would have severely injured myself trying to keep up.
Adapting to change is not the same as giving up, it is acknowledging a need and doing the best you can to address it.
Build a personalized care kit
I did not go out and purchase every possible pain relief product or mobility aid I could ever imagine needing when I was first diagnosed. Instead, my care, or as I like to call it my survival kit was built based on my needs as my illnesses and chronic pain have changed throughout the past 20 years.
I didn’t purchase a wheelchair because of one instance or day, but instead because my body had begun presenting a pattern of needing assistance. Recognizing that pattern and acknowledging that it will happen again, made it possible to see how a wheelchair could benefit my life.
How I treat chronic pain has also changed since my first diagnosis. In fact, it changes daily based upon the needs of my body. This is why I don’t have just one go-to product. I use many different pain relief products.
There is no one-size-fits-all pain reliever. Having multiple products on hand helps me address symptoms individually and provides an alternative when my body becomes accustomed to another.
Begin building your survival kit with a journal. Keep track of pain levels, how they change, and how long the changes last. Express your emotions! A pattern of sad, lonely, and depressed posts tied to a particular type of pain may trigger an idea of what could help you through next time.
There is no right or wrong way for adapting to the changes that chronic pain creates in your life. It is a never-ending learning process that our friends and family who aren’t chronically ill will never understand. With that said, do you!