I am a wife, a mother, an auntie and a friend. I love thrifting, garage sales, re-purposing, creating, painting, anything that makes our little rental home more welcoming, comfortable and cozy. I have discovered the "art" of amateur photography & I love the idea of capturing the beauty in the ordinary everyday things that surround us. Blogging is a wonderful way to make new friends and share with people who have the same interests. My personal taste in decorating leans towards "casual cottage/coastal decor". I now have a small shop on etsy, called "SandySeashore" where you'll find some of my vintage finds, my photography and some handmade things. I hope you take the time to check it out! Thanks for droppin' in!

Sunday, March 10, 2013

Hey there! Spring is almost here, I can hardly wait! I'm sure we could all use a little sunshine!

I've posted Adrienne Dellwo's explanation of what Fibomyalgia is before. She really knows how to describe the illness, and putting it in words isn't easy.  It's almost like having the flu all the time. My rheumatologist refuses to call it Fibromyalgia. He calls it "soft tissue arthritis" which in itself describes it better, but still doesn't really get down to the nitty gritty of it. The following is another post from Adrienne Dellwo that depicts the average day in the life of someone who suffers with Fibromyalgia very well, although levels of painsymptoms and overlapping conditions may vary from patient to patient.  


 A Day in My Life with Fibromyalgia

What it Takes

By , About.com Guide
Updated February 26, 2013

Managing fibromyalgia and overlapping conditions isn't just a full-time job – it's a lifestyle. I've made changes to every aspect of my life, some minor and some major, in order to adapt to my symptoms and minimize the things that exacerbate them.
To help give you some insight into what it means to adapt your life to fibromyalgia, I've written below about what my typical day is like. My lifestyle changes were made to deal with my specific symptoms and situation. They aren't the right adaptations for everyone, but they can give you an idea of the types of changes you might be able to make.
Here's how I get through a typical February day.

A Day in the Life: Managing Fibromyalgia

My alarm goes off at 7:45. I turn it off, proud of myself for not hitting the snooze button, then turn off the CPAP (continuous positive airway pressure) machine I need for obstructive sleep apnea. I then remove my CPAP mask and the splint I wear at night so I don't grind my teeth and aggravate my TMJ (temporomandibular joint dysfunction.)
My left hip and my neck are screaming with pain. Before getting out of bed, I do a mental assessment of the rest of my body. My hands are stiff but not too sore for a change. Shoulders and knees seem OK. Feet? Puffy and stiff, and still sore from the walking I did yesterday. It's going to hurt to step on them.
Still lying down, I do some light stretching for my hips, neck and arms. I then sit up slowly so I don't make myself dizzy and do a few more stretches. These are a combination of yoga, physical therapy, and things I've run across over the years that help keep me loosened up.
I look down beside the bed to see if I remembered to put my slippers there. I know my feet will be happier if my first steps are cushioned instead of right on the floor, but alas, I didn't put them where I should have. I stand slowly, my hips groaning and creaking, and take two painful steps to the closet. I get my slippers and put them on my tender feet. That's a little better.
I wake up my kids to get ready for school, bundle up in warm clothing, and doze on and off on the couch until it's time to drive them to school.
Because I have horrible insomnia and I have yet to find effective treatments for it, I've only had about four hours of sleep. I rinse my TMJ split and put it back in, strap the CPAP mask back into place, and go back to sleep.
Around noon, I get up and go through the self-check and stretching process again. I'm happy to see that my feet are feeling quite a bit better. Still, it's a bit cold, so I put the slippers back on, along with my super-soft terry cloth robe. It zips up the front because I can't always tolerate a tie around my waist.
I wash my TMJ splint and CPAP mask and put them aside to air dry so they're ready for tonight. I then make my morning tea – I've given up coffee because it bothers my stomach and makes my tremor worse. I'm grateful that caffeine from tea doesn't have a negative impact on my fibromyalgia symptoms. (I've experimented at length to make sure!)
I open up my pill sorter and dump out 20-some pills, most of them supplements. I separate them into four groups and wash them down with cranberry juice. (I prefer a strong-flavored juice to help cover up the taste of the supplements. Otherwise, I'm stuck with fish and roots. Bleh.) I then use a saline nasal spray, put my sublingual B vitamins under my tongue, and eat my gummy probiotics.
My stomach is a bit unsettled today, so I have a whole-grain bagel and cream cheese for breakfast.
Now it's time for work. This is the biggest lifestyle change I've made due to illness: I used to be a TV news producer, working about a 50-hour week in a high-stress, noisy, chaotic environment. Now I work from home, in my quiet office, and schedule my work time around my life and my symptoms.
I turn the heat up a touch so I don't get a chill and sit down in my ergonomically correct chair in front of my ergonomically designed computer workstation. I open my laptop and get started.
After about two and a half hours, my husband comes home and I realize I've sat in one position for too long. I stretch my hands and arms, then stand up – slowly! – and apologize to my lower back. In spite of my efforts, I have gotten fairly cold.
I need to pick up my kids from school soon, so I run a bath and pour in some Epsom salts. I soak in the hot water for as long as I can and get out feeling toasty warm. My muscles have loosened up a bit, too.
As I get dressed, I realize that I over did it on the heat. My forehead won't stop sweating. Since I'll be going out into the cold soon, though, it'll be worth it.
Back home with the kids, it's time to start cooking dinner. I start cutting up some leftover chicken and my hands protest, so ask my husband to do that for me. I put together a simple chicken salad while the kids set the table.
After dinner, while the kids clean the kitchen, I do a couple of loads of laundry, with my husband's help. Then, after we all watch a show together, it's time for everyone but me to go to bed.
With the house quiet again, it's time to do a little more work. The desk chair just doesn't feel comfortable, so I sit in a recliner and use a lap desk and pillows behind my back to make it as ergonomic as possible. I put my TENS unit on my hips, then later move it to my neck, then my shoulders, then my left leg before finally putting it away.
Around midnight, I wrap up my work, then turn on the TV and spend some time checking email and social media. My brain's a bit foggy, so I have to rewind the show a few times because I missed what was happening while I read something.
After a trip to the kitchen to take my nighttime pills and make a calming herbal tea, I lay down on the couch and start another show, hoping I'll soon be tired enough to sleep. I doze off on the couch around 3:45 a.m.
When my husband gets up for work an hour later, he wakes me up. I grab my CPAP mask and TMJ splint and head to bed, stretching my hips a bit and making sure my alarm is set for 7:45. In less than three hours, it'll all start again.

 The following is another post from Adrienne. It explains how textures can really affect people with Fibromyalgia. I have days where clothes hurt me.
 Blog Classic: March 12, 2012
The hypersensitivity of fibromyalgia and chronic fatigue syndrome has an impact on all of our senses. A recent Readers Respond comment mentioned an unusual tactile response that I thought was worth bringing up:
"The weirdest pain by far is, and absolutely no one believes me when I tell them this, wet grass. That's right, wet grass. Touching it esp. in the morning, or even walking through it w/shoes on causes an all-over body pain." -mnt
While I haven't had a problem with wet grass, I can totally understand it as a textural sensitivity. Similar things that aggravate my nerves and can cause an upswing in symptoms include elastic, nylon, steel wool and these microfiber dish cloths I made the mistake of buying a few years ago. They seriously give me the willies and set my whole system on edge. When I shop for clothes, I do it by feel almost as much as by sight.
When something that shouldn't cause pain does, the medical term for it is allodynia. A lot of us have a form called tactile allodynia, which is pain from touch. That's why it hurts just to have clothing against your skin. When the pain comes from movement, such as walking across wet grass or running your fingertips along fabric, it's called mechanical allodynia.
Thank you for taking the time to read this. Awareness and understanding is a step towards finding a cure.

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