By wendy, on February 29th, 2012%
By Wendy Burnett
Have you lost friends because of your chronic physical or mental illness? I have. Actually, I’ve lost quite a few friends since I got sick, for a lot of different reasons, but the only ones I really regret are the ones I’ve lost to chronic illness burnout. Those, I could have prevented, if I’d known back then what I know now.
 Chronic Disease (Photo credit: tamahaji) I used to have a very small group of friends that I talked to, and everyone else got the “everything’s fine” act. There’s not anything wrong with giving people the act, if they’re only acquaintances or coworkers, and they don’t NEED to know what’s going on with you, the problem actually comes in with the people you really talk to. We all need someone to talk to when we’re having a high pain day, or the depression is so bad that all we want to do is curl up and die, but loading it all on just a few close friends can be a bad thing for them and for you.
Whether you have a physical illness, a mental illness, or some combination; if you only share your pain and negative feelings with a few people, there’s a danger that it will be too much for them. Overloading your support network can cause them to have to pull back so that they can take care of themselves, especially if that is all you ever talk to them about. This is not selfishness on their part, it’s self protection. You HAVE to deal with your chronic illness every day, but your friends can get burned out if you lean on them too heavily. (We can get burned out ourselves, too, but it belongs to us, and it’s a lot harder to step back from when it’s yours.)
Don’t freak out!
I’m not saying you can’t tell your friends how you feel, or that you’re having a hard time. What I AM saying is don’t depend only on one or two close friends for all of your emotional support. Everyone has their own crap to deal with, and sometimes they can’t deal with your stuff too; Continue reading How to Avoid Burning Out Your Support Network »
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.
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By wendy, on November 24th, 2011%
 martha_chapa95 via Flickr By Wendy Burnett
It’s Thanksgiving, what are you thankful for?
Living with chronic illnesses can make it very difficult to find your gratitude sometimes, and we all struggle with that on a regular basis. One of the things you learn eventually is that there is always something to be grateful for . . .
By wendy, on November 24th, 2011%
 By NJR ZA (Own work) [CC-BY-SA-3.0 (www.creativecommons.org/licenses/by-sa/3.0) via Wikimedia Commons
By Wendy Burnett
It’s that time of the year again. Thanksgiving, Christmas, cooking, shopping, decorating, parties and other holiday activities can lead to over-doing things. Throw in the expectations (and demands) of family and friends and you get higher stress levels, too. Add it all together, and you get the perfect recipe for a serious flare, which can totally ruin your the season for you.
It doesn’t have to happen though. There are dozens of ways to cope with the holidays, and I’ve collected five posts and articles full of helpful tips for simplifying your celebrations, pacing yourself, and coping with the physical and emotional stresses of the season. Continue reading Top 5 Posts: How to Prevent Holiday Flares »
By wendy, on November 14th, 2011%
 Image by Big Grey Mare via Flickr
By Wendy Burnett
“Shit Happens” – I know you’ve heard the expression somewhere. There are lots of other ways to say it, but it happens to all of us. Things go wrong. They just do. You can’t prevent bad things from happening sometimes, but you CAN stop them from destroying you when they do.
There have been lots of bad things happening around here in the last several months, and we’re all stressed out about them, but I’m not totally freaked like I would have been a few years ago.
Instead of freaking out, I’ve been looking for other options like ways to bring in more money and ways to save on things I use all the time. Instead of becoming paralyzed, I’ve used the “shit” as motivation, and as fertilizer for the flowering of new ideas. Continue reading Shit Happens – Use it to Fertilize the Flowers »
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
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By wendy, on November 4th, 2011%
 Image by ex.libris via Flickr
By Wendy Burnett
The day three prompt for the Health Activist Writer’s Month Challenge (#HAWMC) is: “Dear 18 year old me. Write a letter to yourself when you were 18. Be sure to tell yourself what to do more of, what to do less of, and what you have to look forward to in the next few (or several) years.” Interesting, but not easy, so here goes.
Dear Me:
I remember what it was like for us, way back when. I just want to let you know that we’re going to be okay. Life is what it is, and there will be pain and sorrow, but there will be joy and love, too.
It’s been a very long time since we’ve been 18, and we’ve been through a lot of shit together, but always know that it’s all worth it. I don’t regret any of the choices we made, because they’ve put us where we need to be. Things are tough, but we’re tough too, and things will work out just like they always do. You’re still a big part of me, with your hope and optimism; just as I was always there inside of you, waiting for us to learn the things that made it possible for us to be who we are now. For the most part, I like who we’ve turned into, and without everything that’s happened, we’d be a different person.
There are going to be times when we’re dealing with some really nasty stuff that feels like the worst thing that could ever happen to us. I need you to know that as bad as it feels while we’re living through it, the worst things we’ve ever experienced have turned out to be the best thing that could have happened because they put us where we needed to be to move to the next stage of our life.
I don’t have a lot of advice to give, because I wouldn’t want to change the past, but I do have a few bits and pieces for you. First, we’re going to have to spend a LOT of time pretending to be something we’re not so that we can survive. Always hang on to who you REALLY are inside, even when surviving requires hiding what you believe or how you feel.
Don’t take it personally when X and his family treat you like you’re stupid or helpless, you know better, and they need to put you down to feel better about themselves. It’s not about you, it’s about them and their inadequacies and insecurities.
Take care of your own needs too, you deserve just as much attention and caring as anyone else, and there’s going to be a lot of times you’ll be the only one who CAN give you what you need. You’ll find the people you need, when you need them, but in between you’re going to have to be there for yourself.
Learn to say “NO!” I know how much you love taking care of the people you care about, that hasn’t changed, but you can’t do everything for them or you make them less than themselves. They have their own lessons to learn. You can’t protect them from the pain that teaches those lessons, no matter how much you want to; and you can’t force them to learn something they aren’t ready for either.
Life is both good and bad, and sometimes we don’t know which is which until afterwards. Remember to be grateful for the good bits, they’re what keep you strong during the bad times; and don’t forget to tell people how you feel, you may not get another chance . . .
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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By wendy, on November 3rd, 2011%
 Image via Wikipedia
By Wendy Burnett
The Health Activist Writer’s Month Challenge Prompts (#HAWMC) for day two is to write about a TV show based on my life or blog . . . I LOVE this! My mind is going wild with ideas, but they’re all based on the same theme. The only real problem right now is a name. I have absolutely no idea what to call it, and I’m hoping that by the time I hit the end of the post I’ll have come up with something.
The format is dead easy, as soon as I read the prompt I knew I wanted something like a cross between Dr. Oz and Dr. Phil (without the confrontational pseudo-therapy.) The focus is living well in spite of having chronic illnesses and educating “normals” about the difficulties we face every day.
This gives me a huge range of possible guests; life coaches and psychologists, medical doctors that specialize in pain management and various chronic illnesses, massage therapists, herbalists, aromatherapists, acupuncturists, reflexologists, chiropractors, health activists, nutritionists, specialists in ergonomics and accessibility, lawyers that specialize in disability issues and patients with different issues and combinations of illnesses.
Not only that, but the combinations are endless. Panels of patients discussing how hard it is to get adequate pain relief or trying to find doctors that don’t treat them like addicts, debates between allopathic physicians and holistic physicians, massage therapists and aromatherapists discussing how their specialties can be combined, discussions between pain management doctors who believe that opioids are a necessary tool and doctors who refuse to prescribe pain medications at all, etc., etc., etc.
So many possibilities, so many topics . . .
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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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.
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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
Welcome to the new home of Sick and Tired of Being Sick and Tired. I hope you'll enjoy the changes, and the new resources I'll be adding as I have time to work on the site. Things will look a bit odd while I learn where and how to modify the appearance, so please bear with me.
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