- You never get a day off: it ebbs and flows in severity like background noise
- Neuropathic, myofascial, and joint pain all have their own flavour
- Pacing is your best friend. Without it flare ups happen.
- Doers with a capital D, according to a pain specialist I saw, tend to experience chronic pain
- I’ve had to learn that doing nothing is an activity (see previous line)
- It’s an invisible disability
- Self care is key, as is listening to your body
- Having a talented physiotherapist and massage therapist is a gift from God; without mine I don’t know how I’d function
- Medical accomidations at work help immensely
- Being grateful for what you are able to do and accomplish is helpful
- It’s okay to grieve what you lost, it’s almost necessary to accept your reality and to be able to accommodate your expectations
Wordsmithing 
It must be hard! I do hope that eventually, you will get relief. Your list will be helpful for others who have chronic pain to know they are not alone.
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Yes, I experienced chronic pain for several years and got a bitter taste. I hope you have many people around you other than your health professionals who are able to give you support in your daily struggle. Writing about it also takes courage.
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A very dear friend has fibromyalgia and she will love this line when I share it with her: “I’ve had to learn that doing nothing is an activity.” This is so very true and important. Be well. Treasure yourself!
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Thanks for sharing something difficult. I’m glad that you have some things in place so that you can get some relief. I think you’re right that chronic pain is an invisible disability.
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I experienced an extended time of pain, and know that it is not easy to talk about, much less write about for all to read. Thanks for sharing, Heidi, because your list will help others– especially to see inactivity as doing. Often inactivity is the “doing” that must be done if we are to heal.
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I hope that it’ll help others at it is invisible.
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I have a friend with rheumatoid arthritis and I don’t know how she endures it. I thought your point about self care and listening to your body was key. Sometimes you have follow your gut too.
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Yes, its important to listen to your inner voice and not drown it out. It has wisdom.
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I suspect that one thing to add to your list is that it helps if you begin to know as much as possible about your physical limits, which it seems you are doing. Best to you in this big challenge.
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Yes, that is key : )
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I feel for you. There is no relief is there? It sounds like you have amazing providers. Interesting perspective learning that doing nothing is something. Maybe we need to all embrace that perspective and slow down. You have an amazing attitude.
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I have a genetic connective tissue disorder, EDS, so there is nothing to be done with faulty DNA. I’ve learned some important life lessons these past few years when the symptoms escalated. Gratitude is huge. I’m able to work part time, others are on disability. I am very very thankful that I can do a job I love so much.
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I nodded through most of your points. Chronic pain is a soul sucker at times – I hate being miserable but sometimes it can’t be helped. Thankfully you have some relieve
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