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 December 31st, 2011%
 Image via Wikipedia By Wendy Burnett
Okay, you don’t know what “painsomnia” is, or if you have it, but you definitely have trouble sleeping on a regular basis, right? After all, that’s a common issue for anyone with chronic illnesses. Painsomnia is a term I came across on Twitter; I don’t know who came up with it, but it is absolutely perfect for what it’s intended to describe. (If you invented it, or know who did, please leave me a note in the comments so I can give credit where credit is due.)
painsomnia – combined word made up of the words pain and insomnia, used to describe an inability to sleep because of high pain levels.
There are tons of posts and articles out there with tips for going to sleep more easily and getting better quality sleep. There are also a lot of articles about ways to reduce your pain levels. There are, however, only a few posts or articles available that suggest ways to do both at the same time. (Most of them are found on blogs that focus on living with chronic illness in general, or a specific illness.)
Doctors aren’t much help with this one, since they usually want to throw another pill at the problem. More pills can be problematic for anyone with a chronic pain disorder like fibromyalgia, since sleeping pills and pain medications may not work well together. Even if you have medications for both pain and sleep, sometimes even the maximum safe dose isn’t enough and you need extra help.
There are lots of safe options you can try that won’t interact with the medication you take, Continue reading To Sleep, Perchance to Dream – But What if You Have Painsomnia? »
By wendy, on November 26th, 2011%
 Image by librarygrrrl via Flickr By Wendy Burnett
Day 26 – The prompt for today’s Health Activist Writer’s Month Challenge Prompts (#HAWMC) is: “I still remember… Free write a post that starts with the line “I still remember…””
I decided that since this one is so general, I’d narrow things down a bit to keep it relevant to chronic illness. Since I mostly focus on my fibromyalgia, or chronic illness and chronic pain in general, I thought I’d put the focus on one of my other issues this time, so this post is going to focus on my migraines.
I still remember . . . the worst migraine I ever had. It’s something I’ll probably never forget. (My hubby probably won’t either, it scared the shit out of him.) I woke up at my usual time and called in to work to remind my boss that I had a doctor’s appointment that day. My head was aching a bit and I felt kind of sick, but I went through my usual routine of showering and washing my hair anyway, feeling worse and worse as I did.
By the time I got done, I felt bad enough to lay down until time to dress, so I curled up with my sleep mask, until suddenly I was violently nauseous. I barely made it to the bathroom before I lost it (thank goodness there was a throw rug I could just roll up to toss into the washer later,) and I was in there so long, making such awful noises, that hubby actually came to check on me.
It got worse from there, because I’m a stubborn bitch, and was determined I wasn’t going to miss an appointment with the rheumatologist that was always booked solid for 6 months ahead.
Hubby had to help me dress, with several interruptions to run worship the porcelain goddess, and eventually we emptied a small trashcan that I could just carry around with me. By this time, my head felt like it was going to explode, even with all the shades drawn and the lights off I could barely stand to open my eyes, and every time hubby whispered a question I nearly screamed from the pain.
Needless to say, the 45 minute drive to the doctor’s office, hugging my trashcan all the way, was a nightmare for both of us. Every bump in the road felt like someone was jabbing a railroad spike through my head, every time I had to open my eyes the light felt like razor blades slicing through my eyeballs, and every sound was like sharp knives inserted into my brain. Poor hubby wasn’t that much better off, either. He has a weak stomach, so every time I heaved, he gagged and choked.
I must admit though, it’s the fastest I’ve ever been taken to the back . . . the second time they had to rush to unlock the door so I could get to the bathroom before I shared my technicolor yawns with everyone in the waiting room, they stuck me in an exam room. I guess they wanted to get me seen and out of there before they had to clean up after me, because the nurse went ahead and started the intake stuff, mostly while I was hanging over their trashcan.
By that point, I couldn’t stop heaving, and within 5 minutes the nurse had rushed out the door and was back with a needle full of something. She kept waiting for the heaves to stop long enough for her to give me the shot, but it just wasn’t happening, so finally she had to poke me while I had my head stuck in the trashcan. (I have NEVER been so glad to be jabbed with a needle in all my life. LOL)
I don’t know what was in that syringe, but it was some damn good stuff. It was only about a minute before the vomiting stopped, and by the time I rinsed my mouth out I was so groggy that hubby had to pick me up and put me on the exam table (I don’t actually remember that part, the next thing I remember is waking up about 2 hours later.) Hubby said later that the nurse had been in there checking on me about every 15 minutes; and as soon as they found out I was awake the doctor came in, we finished the appointment, and I was GONE. (With scripts for Phenergan, Maxalt, and some narcotic pain-reliever in addition to my usual double handful of stuff.)
I’ve had other bad migraines, including ones that lasted for days of wishing someone would chop my head off for me, and others where I threw up several times. I’ve had lots of migraines where I wished I could just die and get it over with, but that’s the only one that ever made me wonder if it was actually possible to die of a migraine.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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 2nd, 2011%
What do you pay attention to in your life? Is it the 5 people who say, “I hope your pain levels drop soon,” or the one who makes a nasty comment like, “fibromyalgia doesn’t exist, you just don’t want to have to work like the rest of us?” (Yes, I’ve actually had someone say that to me.)
I’m going to tell you something you already know, and you’re likely to think I’m sort of nuts until you read a little further.
You can only see the things you look at.
Yes, it sounds stupidly obvious, of course if you don’t look at it you can’t see it, but there’s a point to this statement that is directly related to living as well as possible with your chronic illnesses. It took me a LOT of years to make the connection (I’m a little slow,) and I’m hoping I can help you catch on a little quicker than I did. Continue reading Where is Your Attention Focused?: Positive Thinking for the Chronically Ill »
By wendy, on September 15th, 2011%
 Image by bloomingdalelibrary via Flickr
By Wendy Burnett
One of my absolute favorite activities is a nice long soak in a hot bath full of some wonderful smelling bath salts, but that can be expensive if you have to go out and buy the bath salts at the store. I’ve found out I can make my own; quickly, easily, AND cheaply; with just a few simple ingredients.
Not only are they just as luxurious as the store bought ones, but I can select essential oils that help to relax me and ease my pain, or ones that will wake me up and reduce depression. I decide what effect I want, and with a little research and experimentation, I can get it.
CAUTION: Do not use pure essential oils directly on your skin. They are very strong, and can cause burns and scarring if used undiluted. If you accidentally get some on you, use olive oil or coconut oil on it immediately to dilute it, and see a doctor if there is any pain or reddening of the skin. Also, you should never use an essential oil derived from any plant you are allergic to. (If you’re allergic to ragweed, be extremely careful of chamomile oil. They are members of the same family, and an allergy to ragweed means you may also react to chamomile.) See Using Essential Oils Safely for more information.
The Recipe
- epsom salt
- a glass container with an airtight seal (you can’t use plastic or metal with essential oils, the oils will interact with the container, and could introduce toxins to your salts.)
- essential oils of your choice
- optional: unscented sea salt to mix with the epsom salt
Note: The magnesium in the epsom salt is absorbed through your skin, and helps to relieve pain and relax your muscles. If you’re using the bath to help ease the symptoms of your chronic illness, I recommend that you use no more than half sea salt if you mix it. Although sea salt also contains many trace minerals, it doesn’t work as well to ease pain; and it increases the price of your blend because it is much more expensive.
The basic recipe is simple. For each cup of salt, add 10 drops of essential oil. I like to layer it, with a cup of salt, add 10 drops of oil, another cup of salt, another 10 drops of oil until my container is about 3/4 of the way full, then seal it and shake it up really well. It just seems to mix better and infuse the scents more evenly, especially if I’m using several different oils. For the most even infusion and blending of scents, leave the jar sealed for at least 24 hours before using, shaking it several times to remix and blend.
One of my favorite essential oil blends is half lavender and half rosemary. They are both excellent for skin irritations like psoriasis, eczema or insect bites; stimulate the circulatory system; reduce stress and fatigue; help with migraines and tension headaches; open the the bronchial tubes and help with asthma and bronchitis; repel insects; and reduce pain. Lavender also helps to reduce depression and anxiety, eases the pain of sciatica, and is helpful with vertigo; and rosemary is helpful with neuralgia and “fibrog” (it’s a mental stimulant.)
Using your bath salt:
Fill the tub with water as warm as you can handle (if that’s only tepid, that’s just fine.) Add two to five cups of your bath salt under the running water, swishing it around to make sure it all dissolves, climb in and relax for at least 20 minutes (I normally end up staying at least an hour, adding warm water as needed to keep the temperature comfortable.)
For an even more relaxing, stress-relieving experience; turn off the lights, light a couple of unscented candles, and play some soothing music or a guided meditation.
This bath salt blend is also very helpful in a foot bath at the end of a long, tiring day. It will help relieve the pain of being on your feet, as well as helping to ease the fatigue. Add one cup of the bath salt to a warm foot bath, and soak for at least 20 minutes, adding warm water if needed to keep it at a comfortable temperature.
I’ve found that taking a long, hot bath with my homemade bath salts helps me manage the symptoms of my fibromyalgia, as well as being helpful with various other chronic illness issues. Stress makes my symptoms worse, and a bath not only relieves pain and reduces muscle tension, it also helps me relax and reduces my stress levels.
With the addition of a label and a pretty ribbon, homemade bath salts also make an excellent, inexpensive gift for almost any occasion. You’ll save money, and the recipient will enjoy a soothing experience that will make them feel wonderful.
If you enjoyed this post, and would like to get a notification when new posts are available, please sign up for my email list on the right near the top of the page. (Or you can make a donation to keep the site online.)
   
By wendy, on May 6th, 2011%
 Image via Wikipedia
Are you living in the future? In the time when there will be a cure, or a treatment that will make everything better? Or do you live in the past, rehashing old trauma; remembering all the bad things that have happened to you? Or maybe you live in the past, dreaming of the days when you felt GOOD; when you could work all day and still cook dinner when you got home.
I’ve been in all those places, over and over; and you want to know what they taught me? That I’ve spent a big portion of my life missing out on my “now.”
My past is over. The good and the bad are gone, they live on only in my head and in how they’ve shaped me. The only power the painful times have is the power I give them to affect my present. If I obsess over the wrongs that have been done to me in the past, or the things I’ve lost; it prevents me from being able to enjoy what I do have.
The future? There’s no guarantee that there IS a future. If I’m walking home from work worrying about what I have to do when I get here, I don’t see the roses blooming, I don’t smell the sweet honeysuckle that grows beside the sidewalk or hear the beautiful bird song.
I can walk home focused on what I’m going to do when I get here, or focused on how tired I am, or how much my back (neck, hip, knee) hurts; and the more I focus on the pain, the more I hurt; the more I focus on all the things I have to get done, the more stressed I get.
My other option is to acknowledge the pain and what needs to get done, then focus on how good the sun feels on my skin or how sweet the honeysuckle smells. I can choose to focus on the beauty of the roses, or the pain of the thorns. It seems such a small thing, that choice; but it’s actually huge. It’s the difference between having a good day, or a painful one; the difference between being stressed out or relaxed. The pain is going to be there anyway, it’s always there; but if I choose to focus on the beauty I will be happier than I will if I focus on the pain, and in the end, isn’t that what life is all about?
The biggest thing I’ve learned in this journey is that positive thinking won’t cure my illness, but it sure as hell makes it easier to live with.
By wendy, on April 3rd, 2011%
Have you tried herbs or supplements for your chronic illness? I’ve had to find “other options” for treating my fibromyalgia and bipolar disorder because of my financial situation, so I’ve been doing a lot of research and collecting some tools for working with the herbs I like to experiment with.
 Capsule Machine and Completed Herbal Capsules In other words, I’ve been learning to make my own herbal treatments for my various symptoms. I ordered an “encapsulator” for making my own herbal capsules, and have been playing with that a LOT. Instead of buying bottles of herbal supplements, I’ve been making my own. Continue reading Making My Own “Medicine” for My Chronic Illness »
By wendy, on March 29th, 2011%
 Image via Wikipedia
I’ve been a very, very bad blogger lately, and haven’t posted in forever. The short explanation is that work and the fibromyalgia have been playing hell with my body, and most of my non-work time has been spent doing the things that are absolutely necessary and sleeping. (Lots and LOTS of sleeping.) One of my blogging friends, Phylor, has posted a letter to the chronically ill part of herself, and it inspired me to start writing again (thanks, girl, I needed that!)
Dear body;
I owe you an apology . . . a big one. I know that many of the things I do make you worse, and I’m really sorry about that, Continue reading Dear body: A Letter to Myself About Chronic Illness »
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"The moral test of a society is how that society treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadows of life . . . the sick, the needy, and the handicapped."
---Hubert Humphrey
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