Posts tagged with: Support group

Here we go again …

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I live with chronic pain.

My pain has had a flare up and I’ve been going to bed early and being so tired in the morning I hardly drag myself out of bed. In the rollercoaster of life with chronic pain, I am at the bottom. That means I can only go up, right?

More soon! I promise! I have GOOD entries on paper that I just don’t have the energy to get onto the laptop!

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My marble theory of chronic pain

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Creative Commons License photo credit: Pingu1963 

Today at Help My Hurt I was directed over to But You Don’t Look Sick to teach me about The Spoon Theory. Reading about how Christine Miserandino taught her friend about living with lupus reminded me about how I’ve taught people I live with chronic pain. I have used this explanation with a few friends and it seems to give them a sense of how I live my life.

For those who are healthy, you have unlimited marbles and you can keep them all in one bowl, or you could put them in 26 bowls, really, only the fact that you have unlimited marbles matters.

For those living with chronic pain, fibromyalgia, lupus, migraines, and many other illnesses, marbles are limited. Your body tells you how many marbles you get.

Each week I’m given 70 marbles and seven bowls. I put ten marbles in each bowl and proceed to go through my week, spending marbles as I need to. Normally Mondays are hard at work and easy at home  and so I’ll only use six or seven of my 10 marbles. I move the remaining three marbles to Tuesday’s bowl. On Tuesday, depending on the week, I either use all 13 of those marbles, or sometimes I can save another five or six and move them to Wednesday. Oftentimes, by Friday, though, I am breaking even again. However, there are often weeks where I’m in the negative by Thursday, though, and the rest of my week includes some really hard days. Saturday and Sunday are normally pretty low-key days in my life because I literally don’t have the marbles to get up and go.

Sometimes, like right now, I have a Monday where I start out with five marbles. I stayed up too late on Friday night; I drank, was on my feet AND stayed out too late on Saturday; I spent most of the day Sunday in a highly emotional state. When I do this to myself, I know what I’m getting into. I knew, when I fell asleep during Family Guy (which yes, means I missed American Dad), I knew I was in trouble today.

The social side effects of living with chronic pain are rough. My close friends understand that I’m not a flake, I just sometimes don’t know how I’ll feel on Friday night even after I tell you on Monday that we can go out after church. I budget my marbles pretty carefully most of the time, in hopes that I can function. I try to sleep enough (which is an entry all on it’s own; I think I’m continually dealing with sleep deprivation), I watch what I eat in hopes of getting the right nutrition for my own condition, I try to do some regular workouts (in hopes of avoid weight gain and my doctor reminds me continually that light exercise will help my pain), I’ve been in all forms of physical therapy, I take extra potassium and I spend a lot of time seeking spiritual healing. These things may add a marble or two to my week’s total, but aren’t always enough.

With a more concrete example, I hope you can understand how many people live their lives. It’s not fun, it’s not glamorous, but it’s an easy way to visualize taking care of yourself.

I budget my life with marbles.

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People in chronic pain show higher suicide risk

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Just released: People in chronic pain show higher suicide risk. My response? Duh. A study finally shows what those of us living in chronic pain have known for years; it hurts and we want it to stop. My experience is that many patients in chronic pain often feel as though they have no other options to make the pain stop when their doctors tire of the struggle.I did a short series on chronic pain (herehere and here) after reading about the death of another woman living with chronic pain. 

If you know someone who is struggling with their chronic pain and has mentioned suicide, please please please call the National Suicide Prevention Hotline at 1-800-273-TALK (8255) and be proactive to prevent further pain.

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10 Myths of Chronic Pain

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After yesterday’s post about the late Carla Anna, I felt the need to continue sharing about chronic pain.

Chronic pain is diagnosed over time and is normally considered chronic after a patient experiences the discomfort for more than six months. Pain can be diagnosed by neurological exams, nerve tests and diagnostic testing.

Chronic pain myth #1: If the doctor doesn’t find a medical diagnosis it’s all “in their head.”

Chronic pain fact #1: Chronic pain is not “in your head” (you can however have chronic head pain). Chronic pain is a legitimate and treatable medical condition that can be “maintained” by a combo of neurological, psychological and physical patterns.

Chronic pain myth #2: Only weak people seek treatment or complain about their pain.

Chronic pain fact #2: Seeking treatment has nothing to do with being weak or needy. For me, personally, I don’t want to be a burden to my physicians so seeking care for me is an act of strength.

Chronic pain myth #3: Medications for chronic pain (narcotics are often used) lead patients to become addicts.

Chronic pain fact #3: Narcotics aren’t the treatment option for patients with chronic pain. Physical dependence does occur but the majority of patients do not become addicted.

Chronic pain myth #4: Medications used for chronic pain turn people into “zombies.”

Chronic pain fact #4: The side effects of many narcotic pain killers are tolerable, treatable and can fade with time.

Chronic pain myth #5: Medications used for chronic pain need to be continually increased to treat pain due to tolerance.

Chronic pain fact #5: Increases in doses normally occur because of increases in physical (or psychological) pain status.

… to be continued …

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Never say never

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Creative Commons License photo credit: WirosI’ve had people remind me “no one ever died from pain” before after I’ve complained that I hurt, and I’ve learned to take it with a few grains of salt (normally one isn’t enough). Earlier this week while at my “other job,” I came across a Health Central post that shocked me. I don’t know what to do from here. I just know I am miserable frightend me because in it, I saw myself. “I am a 29 year old woman trapped inside of the body of a 100 year old woman,” are the type of words I use on a day-to-day basis. This woman took words from my heart when she wrote “the real condition I have is chronic pain. It is chronic, but unfortunately, it is not terminal. People look at me and see a healthy girl. They say, ‘You are so young, you have your whole life ahead of you.’ Those words are the most depressing thing I have ever heard in my whole life. Telling me that I have another 40 to 50 years of this? Please, please just stab me in the chest. Over and over.”Chronic pain is hard to understand, sometimes it’s simply impossible to figure out. Oftentimes the source of the pain is hard to pin down, and sometimes patients are treated as though it’s just in their head. Even when the medical community knows where the pain is coming from, it’s not always curable, and the treatments aren’t always ideal. While medicines can numb the pain, it can also numb your brain. I work with numbers and my job requires absolute accuracy; if my brain is numb, a mistake could cost me my job.Ellen from WEGOHealth brings up some good points for those who know someone with chronic pain.

  • Listen to them.
  • Seek to understand them, but consider them innocent until proven guilty.
  • Assist them in finding the relief they need.
  • Stand up for them if they cannot for themselves! You can be their voice when they cannot speak for themselves, or if in speaking they are ignored. If they’re not finding relief, it’s not what they need.
  • Don’t give up on them. They need your strenth, your friendship, your love. If you think you’re sick of it, consider how tired of it they are.

It is tragic that it takes a death to bring chronic pain into the news, but it offers me a chance to remind readers of the other 1 million people who live with chronic pain and what they can do to help out.

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