Why spoons you might ask. I ask myself this also. Here is the answer: people with invisible illnesses and disabilities often call themselves “spoonies” after Christine Miserandino coined the term – the full story can be found here- spoon theory . At the risk of alienating my audience of 2, I will just say I cannot call myself a spoonie. Mostly because I don’t think my illness defines me, and secondly because I am enough of a scientist to know this is not a theory, it is a metaphor. And if we are talking metaphors, what fits for me personally is the slot machine metaphor- where the slot machine passes out energy coins- and the house always wins. (see energy bank). Regardless- cancer has ribbons, and invisible illnesses and disabilities need a symbol in order to make sense. So we will be using spoons.
Chronic pain is hard to explain because it is so individual to the person experiencing it. Chronic pain can be a disease, a symptom of a disease, a result of an injury, the sequelae of treatment for another disease or part of a genetic disorder. It can affect any part of the body. Once pain takes hold, the pain then can become the disease itself. Oy vey.
It’s no wonder that people with chronic pain struggle to explain their pain, be understood and get adequate treatment. So we bond together even though we might have wildly different disease processes. The resources below are not specific to a disease- because that could take pages- fibromyalgia, spinal fusions, lupus, MS, cancer…. The resources are provided are general resources- more to be added in time.
If I had to be forced into a spoon metaphor- I would choose spoons of little bits of everything… never given a whole plateful to be sustained at once but parceling out whatever you get— never what seems like enough— but a combination of flavors that make a beautiful life just the same.
Book/Audio Recommendations
Web Resources
- https://www.painedu.org/resources.asp – comprehensive list of links of pain organizations
- http://www.aafp.org/afp/topicModules/viewTopicModule.htm?topicModuleId=61– American Family Physician journal articles on chronic pain
- http://www.painmed.org/ – American Academy of Pain Management
- http://www.abpm.org/ – American Board of Pain Medicine
- https://www.facebook.com/groups/survivingchronicpain/ – Facebook Support Group (closed) – those seeking to join can request.
- https://www.thewolfandme.com/– personal blog/website about chronic pain and fibromyalgia
- http://countingmyspoons.com/ – blog and website with links to many other blogs related to chronic illness and chronic pain
Recent Pins- Chronic Pain Resources
Lisa Riggs