By wendy, on January 21st, 2012%
By Wendy Burnett
I’ve been seeing some questions online about what a “flare” is, and how you know when you’re having one. The simplest definition is “a time when your fibromyalgia symptoms get worse, then improve again.” (With the caveat that if they STAY worse permanently it’s not a flare, its a worsening of the illness.)
A “fibromyalgia flare” is actually more accurately described as a “symptom flare,” since it can involve ANY symptom or combination of symptoms related to the illness or to comorbid conditions. Most patients (and doctors) only look at pain and fatigue levels; but increased severity of IBS/other digestive issues, fibrofog, anxiety, depression, itching, skin sensitivity, or any other symptom related to your fibromyalgia is ALSO a flare.
Each patient tends to have their own specific definition, so if you ask 20 people, you’ll actually get 20 different definitions; but they’ll all have some things in common: Continue reading What is a Fibromyalgia “Flare”? »
By wendy, on January 20th, 2012%
 Image by blmiers2 via Flickr
By Wendy Burnett
When you have a chronic illness like fibromyalgia, every season has its challenges, but I think winter is the hardest to cope with. Not only is it cold, which tenses up muscles and increases pain levels; but there are so many other issues as well. Basically, winter with fibro sucks, and here are just a few of the reasons (if you have more, leave me a comment and I’ll add them):
- It’s cold, and frequently damp
- The weather changes all the time, which means barometric pressure changes and more aches and pains
- Shorter days and lower vitamin D levels that increase depression
- Being cooped up indoors without being able to open windows and doors increases exposure to indoor molds, toxins, and contagious illnesses; increasing allergic responses and physical stressors
- The weather makes exercising more difficult. Between higher pain levels and less ability to exercise outdoors or get to the gym we can slip into a vicious cycle of exercising less, which increases pain levels even more, and makes it even more difficult to exercise.
So how do we deal with all this “stuff” and keep our health from slipping? There are a ton of ways to minimize the winter “blahs,” but the most important one is: don’t give up! You may need to change some routines, but winter doesn’t have to be a miserable, depressing experience. I try to look at it as a challenge to my ingenuity, looking for new ways to get where I need to be and accomplish what I need (and want) to do.
Winter Survival Strategies:
Dealing with the cold (and damp): Layer, layer, layer! Several light layers of clothing, topped with a blanket; will keep you more comfortable than wearing one heavy item. Layering your clothes traps air between the layers and increases the amount of insulation they provide. If one pair of socks isn’t keeping your feet warm, add another light pair instead of taking off the ones you’re wearing and changing to a heavier pair.
If you’ve read much of this blog, you know how much I love hot packs . . . They’re even more wonderful in cold weather. Even if you don’t have a specific ache that needs heat (not likely, but it happens,) putting a hot pack in the chair or bed with you will help you stay warmer all over.
Flannel sheets are warmer than smooth cotton blends, and an electric blanket or mattress pad can make a huge difference in your ability to stay warm at night. They also provide gentle, all-over heat for the more general aches that tend to come with winter weather.
Shorter days and depression: Using full spectrum light bulbs will help, and so will adding a vitamin D supplement (low vitamin D increases depression, and with shorter, gloomier days our body doesn’t make enough.) Adding B vitamins can also help, either through supplements or more veggies.
Isolation is something else that can increase depression levels, and winter weather frequently keeps us at home. Finding online support through Twitter, Facebook, or forums can make a huge difference.
Being cooped up indoors: Adding a few potted plants will increase indoor air quality (if you have pets, make sure they’re safe if they get nibbled or keep them where your pets can’t munch them.) English ivy is an excellent plant for reducing indoor toxins, and it’s pretty easy to take care of too. There are many more options as well, and Treehugger has an excellent article on the subject, based on a NASA study on which plant is best for various pollutants.
To reduce the chances that I’ll catch something, I make sure I wash my hands regularly (with plain soap and water, antibacterials don’t help against viruses and increase the number of resistant bacteria,) get plenty of vitamin C and eat more onions and garlic. This last one is a bit controversial, because I also avoid vaccines like the plague. (The ONLY times in the last 15 years or so that my husband and I have actually had the flu were the two years we got a flu shot, and I’ve only gotten a cold once.)
Exercise: This is the toughest one for me because most of my exercise comes from walking to work, and in the winter that’s harder to do. If it’s too cold, or it’s raining, my husband and roommates make sure I have a ride, so I have to get a bit more creative. I’ll frequently do a couple of laps of the store I work at, or, on bad days, just get up and walk across the room a couple of times every hour or so. There are also videos on YouTube for fibromyalgia exercises that can be done while sitting down, which is especially helpful during flares because they’re very gentle and put less stress on your body.
By wendy, on November 30th, 2011%
By Wendy Burnett
Do you do everything you can to ease your fibro symptoms, and wonder why you don’t feel better? If you’re being exposed to the following substances, you may be undoing all the good you’re doing with your diet, medications and alternative treatments.
- Aluminum Hydroxide – An adjuvant added to vaccines to increase antibody production, aluminum hydroxide is a neurotoxin that has been connected to Gulf War Syndrome; as well as cognitive dysfunctions and motor neuron disease, which is virtually indistinguishable from classical amyotrophic lateral sclerosis (ALS) except for the age of onset. It has also been linked to the destruction of, and damage to, motor neurons; which are responsible for telling your muscles to contract or relax, thus controlling movement; as well as for receiving sensations from the body.
- Aspartame – Aspartame (Nutra-Sweet) has been linked to headaches, including migraine; higher pain levels, cancer, brain tumors, tinnitus (ringing or buzzing sound in the ears,) noise sensitivity; decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision; decreased night vision; pain in one or both eyes; dry eyes; dizziness and unsteadiness; confusion and memory loss; severe drowsiness and sleepiness; Continue reading 8 Things You Didn’t Know Would Make Fibromyalgia Worse »
By wendy, on November 26th, 2011%
By Wendy Burnett
Day 24: Today’s Health Activist Writer’s Month Challenge Prompt (#HAWMC) is: “My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?”
 FibroFighter's secret weapons When I first saw this prompt, it freaked me out a little . . . Me, create a mascot? Oh no, I couldn’t do that. After all, I’m not that creative, am I? Well, maybe I am, because the idea kept sort of sloshing about in the mush that is my brain; bumping into all these other ideas about fibro, and coping, and pain. Some of the ideas stuck together, a picture started forming in my head, and suddenly there she was. FibroFighter, the fibromyalgia mascot, waving a hot pad and shouting “I can do it!”
FibroFighter is just as much a superhero as a mascot though. She has to be to do even part of the things that a “normal” (read “not sick”) person does every day while coping with constant pain, exhaustion so deep it feels like it pins her to the bed, and fibrofog that turns her brain to mush.
FibroFighter’s “secret weapons:” Continue reading Introducing . . . FibroFighter! the Fibromyalgia Mascot/Superhero »
By wendy, on November 26th, 2011%
By Wendy Burnett
Day 25 – The Health Activist Writer’s Month Challenge Prompt (#HAWMC) for today is: “Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?”
Part one is easy . . . I’ve never been to Hawaii, and I WANT to go (permanently.) Actually, I guess any tropical island would do, I just happen to know that Hawaii has the internet connectivity I need.
 Randy Son of Robert via Flickr I’ve always loved the ocean and beaches, and being on an island would totally surround me with both. Water in all its forms nourishes my soul, relieves my stress, and relaxes my body. I’ve also always been fascinated by the juxtaposition of beauty and danger in volcanoes, and can never resist watching programs about them. In Hawaii, I would have both, along with warmer temperatures (winter is always the worst time of the year for me, with the cold increasing my baseline pain levels.)
I grew up in south Florida, on the coast, and I miss the feel of the salt air, the roar of the surf, and the ocean breezes. Continue reading Never Have I Ever . . . Now How CAN I? »
By wendy, on November 22nd, 2011%
 Image by limevelyn via Flickr By Wendy Burnett
Day 11 - and the Health Activist Writer’s Month Challenge Prompt (#HAWMC) is: “If it’s not broke, don’t fix it. What is working well in your community, healthcare, blogs, social media, or your work in particular? What do you like about it?”
YAY! I get to do another gratitude post! I know, I know, that prompt doesn’t say anything about gratitude, but what works best in the chronic illness community more than deserves a little gratitude.
There are actually quite a few things that work well (not healthcare, but the rest of it works reasonably well.) What I like the best though, is the community. The vast majority of the people in the chronic illness community are absolutely awesome. Continue reading If It Ain’t Broke, Don’t Fix It »
By wendy, on November 9th, 2011%
 By Wendy Burnett
Day 8 – The Health Activist Writer’s Month Challenge (#HAWMC) prompt for today is actually “3 Truths and 1 lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us 1 lie. Do you think we will be able to tell the difference?”
I’m not really crazy about this one, and I missed the Saturday post (that I did like) so I’m going to switch them out. (Besides, I’m a crappy liar, and don’t have much chance of coming up with something you’ll believe.)
So the prompt I’m working from is: “5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.”
This is a bit of a tough one for me, since most of the things that have changed my life have not been pleasant to live through, and are not fun to think about. One of the things I’ve learned in my 50+ years is that enjoyable experiences tend not to have lasting effects on my life (and they never last long enough, either.)
The experiences themselves may have been unpleasant, but mostly they’ve had good results (eventually.) I look at the nasty bits of my life as learning experiences because every one of them has taught me something I needed to know, pushed me out of my comfort zone, or both.
I guess the first and most life changing experience that I can remember is my mother “kidnapping” me from my dad’s family when I was 5 years old. Continue reading Life Changers are Always Painful »
By wendy, on November 6th, 2011%
 Image by bayareabaw via Flickr
By Wendy Burnett
Oh, well, looks like yesterday is going to have to be one of my “get out of post free” days. Between the pain levels and the Vicodin hangover (I don’t take that crap very often, so it can have some odd effects,) I slept until I had to get ready for work. I’ll probably make it up later though, because the prompt is pretty interesting.
The day 6 prompt for The Health Activist Writer’s Month Challenge (#HAWMC) is “If I could do anything as a Health Activist… Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there? Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?”
This is gonna be fun. I’ve been thinking about all the things I’d like to do if I had the money for a WHILE and a lot of it is just going to be writing it all down, so lets get started.
- First, I’d quit my job at the awful place so I could focus on my writing and research.
- I’d set up an actual office/studio space so I’d have somewhere I could do audios, videos, and decent pictures for my writing and get away from the constant interruptions while I’m trying to write.
- I’d start working on that TV show from day 2 of the challenge.
- I’d start the newsletter that’s been waiting for me to be able to afford the autoresponder for it, upgrade my hosting plan to provide more functionality for my site, upgrade my free accounts on places like HootSuite and Timely, get rid of all the annoying affiliate links on my site, and do some advertising.
- I’d do more experimentation and research on alternative treatments, and get certified as both an herbalist and an aromatherapist.
- I’d add resources to the website, like scheduled chats on various topics with someone actually there even if I had to pay them, beginner’s guides for the newly diagnosed, and whatever else we could come up with that would be helpful.
- Finally, I’d hire some other members of the chronic illness community to do things like find useful links and research, contribute content, and do graphics and website upgrades/maintenance. I know that there are thousands of people out of work, but I think that part of my responsibility as an activist is to help our OWN community first, and only go outside for services if I can’t find someone within the community to do what needs done.
I know from experience that with the flexibility to work from home, when symptoms allow, most of us are able to do a lot more than we think is possible. In addition, the opportunity to be productive and contribute something helps immensely with the emotional stresses of being sick all the time. It’s more complicated to have to manage multiple employees who need flexibility, rather than a single employee that can do the whole job; but that single employee has a chance at a traditional job, where the others have no hope of being hired by a company that only cares about getting the job done as cheaply as possible.
Now for part two . . . what CAN I do with the resources I have available? In the next year I can continue to add more content and develop resources for the community. I especially want to add at least one article on how to tell whether a “member” site for various illnesses is a genuine forum for helpful resources or a “shill” site sponsored by someone with something to sell. I can update my “links” pages, and I can go ahead and start the newsletter I want to do without the autoresponder.
In the next five years? I have no idea, other than more of the above. Most everything else requires money, and I have no way of knowing whether the financial situation will change enough to allow me to do any of those things.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
By wendy, on November 2nd, 2011%
 By Wendy Burnett
WEGO Health is having a month long event called “The Health Activist Writer’s Month Challenge” (#HAWMC) through November. It sounded pretty interesting, and I can always use more ideas for posts, so I decided to participate even though I didn’t find out about it until I was getting ready for work yesterday. I’m already a day late with my first post, but I figure what the hell, it’s only one extra post, so here we go . . .
The prompt for the first post is “Titles of my future book. Come up with 5 working titles and a quick book jacket synopsis.” This is actually an easy one for me, since all of these books are in the process of being written, and the synopsis is just the basic premise of each book. I don’t know if they’ll ever be published through a traditional publisher, but they will all be available as both e-books and Kindle editions when I finish them.
Making Your Own Medicine: A Guide to Adding Herbs to Your Treatment Plan - The use of herbs (and other alternative treatments) can improve quality of life and reduce the need for medications, IF they are used safely and appropriately. This guide provides information about how to safely integrate alternative treatments, how-to’s for creating herbal treatments, and resources for finding more information.
Suffering is Optional: My Life with Chronic Illness - Although I have pain and fatigue (and lots of other symptoms,) I don’t suffer from them. They don’t make me miserable, or cause me psychological distress, or make me unhappy. Continue reading Current Projects: Titles of My Future Books »
By wendy, on August 16th, 2011%
 Image by chadly via Flickr
By Wendy Burnett
When you have a chronic invisible illness, one of the hardest things to deal with is the lack of understanding from your family, friends, and co-workers. “Normals” (those without chronic illnesses) have only had illnesses that last a few days or weeks, then go away; so when they see you on a “good” day, they think you’re “getting better.”
If your friends see you out shopping one day, and then the next day when they ask you to go to lunch, or help with something; and you can’t because the shopping wore you out, they get angry or think you’re “faking.” After all, you were fine yesterday. Continue reading 3 Ways to Explain Your Chronic Illness to Family & Friends »
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---Hubert Humphrey
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