Posts tagged with: Musculoskeletal Disorders

“If you do not fight, you will not win.”

Stones
Image by Fr Antunes via Flickr

A recent message from my young adult pastor really moved me spiritually, but it also has had an effect on my life outside of my faith in Christ.

John Mark reminded us, in the war of life, “if you do not fight, you will not win,” and it struck me that this comes into play with our health, too – especially those with chronic illnesses. If you choose to “give up,” you can never actually “win.” If you choose to educate yourself, give yourself material to fight with you can learn the best methods to “fix” the problem. While you may never have a cure, you can find treatments, support and other options besides giving up.

When I heard that I might have fibromyalgia, instead of just accepting it and moving on knowing that I have an incurable syndrome, I did a ton of reading. This reading lead me to believe I *didn’t* have fibro! I approached my doctor, encouraged him to do some more studying of my body and he realized that I was right. What I do have is ankylosing spondylitis, which is no more curable or stoppable than fibromyalgia, but I know now different treatment methods. I chose to fight, I will choose to win.

I just wanted to encourage you today to keep that line in mind … “if you don’t fight, you will not win.”

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Useful health websites, III

Healthy Snacks
Image by ChinchillaVilla via Flickr

My favorite site that I’ve stumbled upon since this new project at work has been Patients Like Me. This website has blown me away.

I can’t even go into everything that Patients Like Me offers because it’s so in depth! Create a profile to reach out and make new friends with your same condition. Even if you’ve not been officially diagnosed, you have an option of joining the groups of patients who are living with the same issues you are. Make lists of your symptoms, your treatment options, your lab test levels and even your weight. Update daily, weekly, or even monthly to begin seeing trends in your health.

One of my favorite parts of Patients Like Me is their “research” tab. Look at the available tools, the current studies, and even opportunities to jump into being a lab rat for your condition! Gab with other people on the forums and make connections you didn’t have beforehand.

I liken Patients Like Me to a MySpace for those living with chronic illnesses. It’s such a great way to reach out to others and make new friends who understand what you’re living with!

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My marble theory of chronic pain

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Image via Wikipedia

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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