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When Not To Accept A “New Normal”

When Not To Accept A “New Normal”

The challenges of rheumatoid arthritis are endless. At times I feel like I’m living in a game of whack-a-mole; as soon as I get one symptom to subside another one inevitably pops up. This is a good way to build resilience, but not quality of life. Over the years I’ve noticed that during rough times I tend to accommodate to new normals like severe pain and lack of sleep without thinking about the consequences for my life and overall health. The problem with this is that sometimes new normals aren’t inevitable; instead by taking time to look at what is happening you can make changes that get you back, if not where you started, at least much of what you lost. So, recently I put some thought into it and realized that there are behavior benchmarks I can keep track of that will tell me when it’s time to adjust what I’m doing to improve my circumstance.

Sleep deprivation is a particular sneaky symptom because it erodes your life in ways you may not connect. Lack of sleep makes you feel like a Zombie, but it also can affect your memory, concentration, emotions, pain levels, and safety, especially while driving. These are no small things, so it is particularly important to keep on top of your sleep. The behaviors I pay attention to that let me know my sleep has been less than adequate are waking up tired more than a few days at a time, feeling irritable, and living in a fog of fatigue that starts a few hours after I wake up. There is no easy answer but many options for helping to improve sleep, much of what every one of has to do is trial and error. Over the years I’ve figured out how to manage my insomnia depending on how bad it is and what is causing it. If pain is the culprit I will do different things than if the insomnia is caused by stress or anxiety. Using sleep hygiene techniques daily and adding things as you deal with changes in sleep is a good start.

Another thing I watch out for is my pain levels. Like many people who live with RA, I’m always in pain to some degree, but there are periods that my pain levels skyrocket. As a kid with juvenile rheumatoid arthritis I learned to “grin and bear it” really well, but I wasn’t as good at speaking up when I was in a lot of pain. I was a fatalist about pain, and tried to ignore it. As I grew into adulthood I realized this wasn’t healthy and began to listen to my pain in order to figure out how best to manage it. When I did this I discovered something that may be obvious- there are many things I can do to decrease my pain levels significantly. I’m still not as good at listening to my pain as I am at ignoring it, so I know that I need to watch out for certain behavior benchmarks that tell me my pain needs to be dealt with more aggressively. When I start dropping things or tripping more often, when I can’t sit or stand for any length of time without gritting my teeth, and when I dread eating anything hard or crunchy, I know I’ve let my pain go too far.

Rheumatoid Arthritis is guaranteed to play with your sense of joy. I consider myself lucky to be a naturally upbeat and happy person but over the years I’ve had periods of intense sadness and hopelessness during extended times of increased disease activity. Only a robot wouldn’t be affected emotionally by this savage disease. I’ve decided that RA will take many things from me, but I’m not going to give it my love of life too. So, I pay attention when I find myself waking up with no enthusiasm for the day, when I don’t want to make any plans, when life in general seems like an endless chore. Obviously, these feelings are not joyful ones and not conducive to health or happiness, so when they pop up I immediately ask myself where they are coming from. The answer tells me what to do. I may need to seek professional counseling, or perhaps I need some time alone to sort out my thoughts. Sometimes it’s the voice and inspiration from one of my good friends that will switch my emotions back to where they need to be.

What are some behaviors you can watch out for that tell you it’s time to re-adjust your life? Is there a “new normal” that you can work to avoid? I have to say, telling RA “You’re not taking this from me!” feels pretty good!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • stormlight
    3 years ago

    I find I need to take a pretty belligerent attitude toward my RA, something along the lines of “This disease is *not* going to wreck my life. Not under *any* circumstances.

    Pre-diagnosis I was depressed quite a lot, partly because of the pain but mostly because although I knew intuitively that *something* was badly wrong with me, I didn’t have an actual answer to the question, “What is this thing that’s afflicting me?” The not knowing is probably, in some ways anyhow, worse for depression than the pain.

  • kat-elton author
    3 years ago

    Stormlight- I totally agree, uncertainty is awful, especially when you know there is something wrong but you can’t find answers. And I think your belligerent attitude shows moxie, something that will keep you going, pain, disease, or not. There is an author named Lawrence Gonzales who writes about survival and resilience and he says that one thing that helps people survive extreme circumstances (like being lost at sea, or hurt climbing a mountain) is having a mantra. By having your mantra, you remind yourself of who you want to be and it keeps you going. I think you naturally figured this out, so good for you! One of mine I stole from Winston Churchill- “Never, never, never give up!” Take Good Care! 🙂

  • Kimmieguy
    3 years ago

    Hi! I have been so blessed to be led to Kat and her inspirational writing. I loved the two books and find comfort in her story and support. I’ve learned so much about myself and my path, and no longer feel alone or crazy. I continue to lead other RA peeps to her writings. Thanks for the advice, honest insight, and continued smiles. After 15 years with RA, I’ve finally come to peace with the process of TLC. I appreciate the posts and the smiles so very much. Thank you so much!

  • kat-elton author
    3 years ago

    Thanks Kimmieguy for your kind words- from your pic it looks like you have a cute four-legged TLC buddy! Keep up the good work and remember- you are never alone 🙂

  • dayslikethese
    3 years ago

    Thank you for this! I try to keep a schedule and prioritize. I have learned to just relax and distract myself with beautiful music. Then I don’t just ignore the pain but get creative on how to solve my current challenge. When I can’t even listen to music, I will use positive visualization like a pretty place, the sea, a garden. I talk aloud: “You can do it!” “Oh, I’m in more pain than I thought.” Sometimes I can’t even think (the brain fog) but I keep in mind what has to be solved when I can think again. And if all else fails, like my knee is stuck in the middle of the night – a good whack solves it. I try not to think of flareups as the new normal but I have to be honest with myself too. It was time for a walker, more canes and chairs in the kitchen and bathroom.Everyday I have to adjust the support materials on my bed. It has to be done. I’m going to need more or less support at times.I try to catch myself when I’m in a bad mood and I’ll laugh: “Whoa you are cranky today!” I’ll say that I won’t do anything but then I gradually start one small thing – clean the bathroom sink–and my mood lifts. I had been a very active person my life until I got benched with RA 2 years ago.
    Thanks again for your post!

  • kat-elton author
    3 years ago

    Hi dayslikethese!
    I think 2 years with RA has taught you that there is never a dull moment with this disease!! And that a sense of humor never hurts 🙂
    Keep smiling!

  • Richard Faust moderator
    3 years ago

    Thanks for writing dayslikethese. Glad you are finding ways to keep your spirits up. Adjusting to the changes RA forces is certainly a major topic in the community. In this article one of our contributors talks about turning the adjusting in a positive direction:

    https://rheumatoidarthritis.net/living/different-is-just-fine/.

    Good luck on continuing to find your “one small thing.” Best, Richard (RheumatoidArthritis.net Team)

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