15 posts from May, 2017

Let’s make fibromyalgia visible today

Posted May 12th, 2017 by

Fibromyalgia awareness day

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.”

-PatientsLikeMe member living with fibromyalgia

“I am so tired of the ‘but you don’t look sick’ comments.”

-PatientsLikeMe member with fibromyalgia

“I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.”

-PatientsLikeMe member with fibromyalgia

This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women.

Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with fibromyalgia, wrote an open letter to the “normals” describing what it’s like to live with a chronic pain condition while dispelling myths that often surround it.

Letter to the normals

 “We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as ‘flaky’ especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice”.

 

Check out Craig’s full open letter to the normals here.

 

So, how can someone with fibromyalgia improve their quality of life? According to the Centers for Disease Control and Prevention (CDC), there are a few things that people living with fibromyalgia can do – namely, exercise.

  • Get active – The CDC suggests physical activity can help improve symptoms of fibromyalgia, including pain, sleep problems and fatigue. It can also reduce the risk of developing other chronic diseases like heart disease and diabetes. However, physical activity can be extremely challenging for those living with chronic pain, so the CDC advises to start slowly and gradually increase your activity level. It can be as small as doing some stretches in bed each morning. They also have a list of recommended exercise programs which you can read more about here.
  • Self-management education – learning more about your condition can help you gain better control over managing your symptoms. Joining sites like PatientsLikeMe to learn about yourself and others like you can help you better understand life with you condition. The CDC also has a list of recommended self-management education programs.

There are more than 3,000 topics in the fibromyalgia forum tagged with “exercise”. Join the discussion!

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What’s in my bag? Motherhood with a health condition = “Mary Poppins” purse

Posted May 11th, 2017 by

Happy (almost) Mother’s Day! I’m Erin, a PatientsLikeMe senior copywriter living with type 1 diabetes – and a very busy toddler. My sister recently joked that my purse is “quite the Mary Poppins bag.” And it is. Between my diabetes “jazz” and baby paraphernalia, I need a big bag. The spread of stuff I lug around is far from those sleekly styled “What’s in my bag?” features you see in tabloids, where celebrities flaunt their favorite eyeliner, seaweed snack and fur keychain.

So what’s in my bag? This is just a sampling of things I bring when I’m running quick errands with my daughter (longer trips call for larger and/or multiple bags).

Diabetic Mom

Diabetes stuff

  • Glucose meter and all the fixin’s: needles for finger sticks, test strips, alcohol wipes to use when I can’t wash my hands before testing
  • Insulin, Humalog (insulin lispro), and needles for injecting it
  • An empty medication bottle, which works well as a mini, childproof “sharps” container
  • Snacks! I try to pack a few kinds – like popcorn, whole-wheat crackers, protein bars and string cheese – for a mix of carbs and protein. Manufactured foods have been demonized lately with the (positive) trends toward “clean eating” and whole foods. But my doctor assured me that the healthy packaged snacks are great for people like me who are always on the go and need to check nutrition labels and count carbs (to balance with insulin intake). Also, I always have water on me because diabetes can make me super thirsty.
  • People taking insulin always need to have candy or something purely sweet on hand in case of low blood sugar. I keep glucose tablets at my house and in my car, but Smarties are a nice, compact treat to keep in the pocket of my glucose meter case.

Being diabetic and a mom

Mom stuff

Diapers, baby wipes, spare clothes, a sippy cup, snacks, books and a toy (usually a doll – because babies love babies) are the “momming” basics in my bag. Car keys make a great teether when molars are coming – fun! Oh, and a lone shoe: One little shoe always ends up in the mix because my daughter is happiest when she’s wearing just one.

Motherhood with diabetes

What have I learned about managing all this stuff (in my bag/life)?

  • Pouches win. I store my diabetes things in a zippered pouch to limit some of my rifling when I need to dig it out. A cute pouch can bring a little bit of joy when you’re toting meds for a chronic condition.
  • I’ll always forget something. I’ve forgotten my umbrella on rainy days, my wallet for grocery trips, and diapers or wipes during, uh… inopportune times. I failed to grab my insulin for my birthday lunch last month, so I rolled with it and ordered chicken Caesar salad and a sugar-free mojito. [Confession: I was pretty mad.]
  • Planning ahead – not my strong suit – pays off. I didn’t get the “checklist-y” gene most of my relatives inherited. I’m more of an on-the-fly packer, but that just doesn’t work well as a mom with diabetes. During the week, I pack my work bag and my daughter’s daycare backpack the night before. [Confession: Not always true.]
  • Cliché but… don’t sweat the small stuff. Until recently, we sent my daughter to daycare in her footie PJs because we were juggling so much in the morning – nobody judged/we didn’t care. My “beauty routine” is roll-on under-eye concealer and maybe some blush, on a fancy day. No biggie.
  • “Adulting” is hard. Sunglasses are great for both sunny days and the occasional tough day when I need take a walk and shed a few tears – which is so healthy. My (amazing) mom died when I was in college, and balancing motherhood and diabetes isn’t easy, especially without her in my life. Big props to my husband – who is incredibly helpful, patient and supportive – and to my daughter, who makes life sweet.

Keep on hustling, moms! You’re awesome – even if your bag is a big ol’ mess.

On PatientsLikeMe, more than 12,000 members living with health conditions say they’re interested in connecting about parenting. And hundreds of topics in the forums are tagged with “parenting.” Join the discussion!

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