Surviving the Winter with Fibromyalgia

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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.

 Surviving the Winter with Fibromyalgia

To Sleep, Perchance to Dream – But What if You Have Painsomnia?

300px Sleep.svg To Sleep, Perchance to Dream   But What if You Have Painsomnia?

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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? »

It’s Thanksgiving – Are You Having Trouble Finding Things to be Grateful For?

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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 . . .

Top 5 Posts: How to Prevent Holiday Flares

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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 »

Shit Happens – Use it to Fertilize the Flowers

well fertilized flowers Shit Happens   Use it to Fertilize the Flowers

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“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 »

Moody Mondays – The Worst of It . . .

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The Health Activist Writer’s Month Challenge (#HAWMC) continues with the day 7 prompt: “Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.”

Mondays for me come more than once a week. Actually, I have a “Monday” anywhere from 3 to 6 days a week, because every day I have to go to work at the “awful place” is Monday.

If you haven’t already figured it out, I hate my job. I would literally prefer that someone shoot me than have to go into that place, but I’ve missed a grand total of one day in the last 18 months. I don’t have a choice, I have to work, or we don’t eat . . .

I work retail, part-time, because retail stores won’t hire full-time workers any more (and I couldn’t survive working full-time at the awful place anyway.) I spend my evenings standing on my feet slicing meat in a deli for anywhere from 4 to 8 hours at a stretch (usually after walking about a half mile to get there,) then walk home. TurboAir GS 12E 300x300 Moody Mondays   The Worst of It . . .

I actually don’t mind waiting on customers and doing the cleaning when I close. Honestly, on the nights I actually have time to get all the stuff I’m supposed to do done, I enjoy the job. My customers are mostly nice, the regulars will come by and just kind of “hang out” for a few if I’m not busy; and the people I work with are pretty cool, too. Even my department manager is a sweetheart, and does all he can to not give me a schedule I can’t handle.

The issue is corporate, as usual. They demand more work than any THREE people could do in the amount of time they give us to do it in, then raise hell if it doesn’t get done. (I swear, I think it must be a requirement to get a lobotomy to be promoted to corporate. If it wasn’t, those people would have to know it’s not physically possible for one person to do what they expect.)

Let me give you an example. We’re allowed one person on duty at a time, and are expected to put out stock, wait on customers, make party trays, slice meat for the sub sandwiches another part of the department makes (on busy days, we go through about 40 pounds of ham and 60+ pounds of turkey, which all has to be sliced and weighed out into individual half-pound packets,) help out in bakery and making prepared food, put away deliveries and rotate stock, mark down things that are approaching the last day of sale, scan out outdated food, keep everything cleaned, set up new displays and reset all the stock every time they decide to move things around, and make sure we always have samples out.

We’re open 13 hours a day, and we’re allowed a total of 13 hours a day labor, so they expect us to also do all of the “closing” cleaning while we’re actually open. Now I don’t know about you, but I haven’t figured out how to be in two different places at the same time. Continue reading Moody Mondays – The Worst of It . . . »

If You Could Do Anything, What Would it Be?

3809025568 7a8642cebd m If You Could Do Anything, What Would it Be?

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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

 If You Could Do Anything, What Would it Be?

Dear Me: A Letter to My Past Self

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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

 Dear Me: A Letter to My Past Self

Where is Your Attention Focused?: Positive Thinking for the Chronically Ill

5610846572 d4ee97c632 m Where is Your Attention Focused?: Positive Thinking for the Chronically Ill

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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 »

Can Life Coaching Transform Your Chronic Life?

img0785 300x225 Can Life Coaching Transform Your Chronic Life?

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There are so many websites out there preying on the chronically ill by promising cures or a better life if you just pay them for their secrets or tips or herbal products, that now we view almost everything that requires money with a jaundiced eye. The latest thing is “life coaching.” There are career coaches, health coaches, wellness coaches, life coaches, relationship coaches and chronic illness coaches, all asking for your money and making all sorts of claims about the wonderful things they can do for you.

Is this just another rip-off? Another way of getting what little money you have without giving you what you paid for? Honestly, it can be, if the coach you choose is unethical or poorly trained. Even if you choose a great coach, if you go in expecting to pay your money and get “fixed,” you’re going to end up feeling disappointed and ripped off.

A lot of coaches make it sound easy, like all you have to do is come in and talk to them, and everything will automatically get better. Well, not exactly . . .

Coaching, like psychological counseling, can make a huge difference in your life. BUT (and this is a very big but,) it is definitely not simple or easy. Like anything else in life worth having, you have to work for it. You have to be willing to make changes in your life that may be difficult or uncomfortable, to look at the things you do that may be sabotaging your progress, and to do the work necessary to get where you want to be in your life.

If you want to have less pain, but the only thing you’re willing to do to reduce your pain is take a pill, coaching is probably not for you. On the other hand, if you’re willing to look for other ways that may help, and actually try them, a coach can be a useful “tool” to help you find options and keep you accountable.

In the past I’ve often said, “I’m going to do this or that,” and then life happened and I forgot, or I got lazy halfway through and stopped before I’d given it enough time to find out if it helped or not. That is exactly what a coach is for. They’ll check in with you at your appointments and find out if you’re actually following-up on what you’ve decided to do. If you’re having trouble figuring out what’s next; they’ll provide tools that can help you decide, or find options, or decide what’s the most important; but they WON’T do the work for you.

A coach won’t tell you what to do, decide what you should try, or talk to your family for you. (If they do, run in the other direction.) They won’t do the research for you, and although they may give you a list of options to check into if you’re totally lost, they’re more likely to give you homework that involves finding those options for yourself. The entire purpose of coaching is to give you the tools you need so that you can go off and do it for yourself.

As odd as it sounds, a coach’s real job is to put themselves out of a job . . . and an ethical coach will try to get you to the point where you don’t need their services any more.

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 Can Life Coaching Transform Your Chronic Life?

 Can Life Coaching Transform Your Chronic Life?
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