By wendy, on April 14th, 2013%
 FIBROMYALGIA (Photo credit: *SHESHELL*) Like your most annoying relative, the five “Ds” of fibromyalgia tend to show up over and over. No matter how positive you try to be, there are days when it really gets to you and you go tumbling back into that black hole that seems to eat all the good in your life.
Diagnosis – Depending on how long you’ve been sick, being diagnosed with fibro can either be a huge relief or throw you into a deep depression. If you’ve been hearing, “there’s nothing wrong with you;” for years, finding out that you actually AREN’T crazy is a major relief. On the other hand, once you realize that having a diagnosis doesn’t necessarily mean the doctors are going to be able to actually DO anything but try to manage your symptoms, you’re likely to fall into the rest of the “Ds.” Even worse, a fibromyalgia diagnosis frequently leads to even more diagnoses, since there are multiple co-occurring illnesses that go along with it.
Desperation – Desperation is a big issue for people with fibromyalgia, whether it’s a desperate search for treatments that work or a desperate struggle to pay the bills. No two fibro patients have exactly the same set of symptoms, and the treatments that work for one may not work for someone else. The worse your symptoms, the more likely it is that you either won’t be able to work at all, or that you’ll only be able to work part time, and both cause major financial issues.
Depression – Depression tends to be a frequent visitor in the lives of those with any chronic illness. You don’t only have to live with pain and other disabling symptoms, you get to hear your doctors telling you there’s nothing they can do for you, your friends and family telling you there’s nothing wrong with you, and society telling you you’re nothing but a lazy leech who would rather lay around and watch tv while everyone else works to support you. And people wonder why you get depressed?
Even if you have a job, the stress of trying to make ends meet on what little you can make can also lead to depression. If you can only work part-time, or can only FIND a part-time job, the situation is even worse. Do you buy medicine so you’re ABLE to work, or buy food? Do you pay the utilities this week, or hope they won’t turn them off before your next check so you can actually EAT this week?
Despair – The previous “Ds” have a bad tendency to lead to despair. You feel trapped, and can’t find any way out. It can be a horrible cycle, and it’s not easy to find a way to break it, especially when financial issues play a part. When rent and utilities take every penny you can scrape together, and you spend days or weeks hungry, despair can eat your world.
Defeat – Finally, there’s defeat; the last, and maybe worst, of the “Ds.” Defeat is a stopper, because once you feel defeated, you’re likely to give up. “What’s the point of fighting any more?” you think. It feels like no matter what you try, it goes wrong; no matter what you do, or don’t do, things just keep getting worse. It gets to the point that you feel like everything you do makes the situation worse, so why bother to do anything anymore?
I know how this feels. I know because I’ve been there, and I am there again. In the last 48 hours, I’ve eaten 6 pieces of bread, 3 with the last of the peanut butter, one with a little chicken salad made out of the last piece of meat in the house and homemade mayo made with the last of the cooking oil and the last egg, and two with a dab of butter. I’ve mostly been surviving on coffee with sugar, because once we eat the last 2 cups of pasta with alfredo and the cup of beans, there won’t be anything left but cornmeal mush with no fat or protein until we get paid on Thursday. I might be able to borrow a few dollars to get us through, but I don’t dare, because I don’t have ANY idea when (or even if) I’d ever be able to pay it back.
Why are things so bad, you ask? Because neither one of us can find another job, and the part-time jobs we have keep cutting our hours. My last check was $194, and I had to pay the last $200 of the rent with that and the $10 I managed to save from the last check. Last week I was scheduled a whole 12 hours, and hubby got about 15, so the next check MIGHT cover the $265 worth of utilities that have to be paid before they start turning things off.
We can’t even get second part-time jobs, because they won’t give us regular schedules, and without knowing in advance when you’ll be working, it’s impossible to co-ordinate two jobs.
I’m still fighting, still trying to find ways to survive, but it’s not easy to fight when you’re so hungry you’re weak and your brain doesn’t want to work properly. It’s even harder to want to survive when you see no way out of the trap you’re in . . . The worst thing about it is that I know that not only am I not the only one in this situation, there are thousands of people who are even worse off; with no place to live except the street.
I honestly don’t know what to do any more . . . We both keep applying for better jobs, but don’t even get an email back from most of the applications, and it’s really hard to get a phone call when you can’t keep the phone turned on half the time. I’ve got a few articles out trying to get them sold, but it could be months before anything comes of that; and I’m working on some that are already paid for, but that money is long gone. Hubby would have a FIT if he had any idea at all that I’m even talking about all this, but the payment for this website is gonna be due in a few days, and I don’t know if I’m going to be able to make it, so I wanted the people who follow this blog to at least have an idea of what happened if it goes away.
If you can, and want to keep the blog going, you can donate at the top of the page by using the PayPal donate button. At this point, I’m no longer too proud to beg, even if it DOES piss off my husband and decrease my chances of getting a better job. The idea of hitting the publish button on this post is TERRIFYING, but at this point, it’s the only chance I see.
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By wendy, on December 25th, 2012%
 A great resource for fibromyalgia patients; their friends, family, and caregivers. It’s that time of the year again. The holiday stresses are almost over (thank goodness) and we’ll all be back to managing and coping with our illnesses as best we can.
I’m not much of a holiday person, so I was doing my usual browsing about and checking social media when one of the people I follow on Twitter suggested this to me. I think it’s a great idea, so I thought I’d share it here as well.
For those of us with fibromyalgia, @FibroModem (if you’re on Twitter, you should follow her) has a new fibromyalgia blog directory available for download. It’s a work in progress, so check back for updates and additions. It’s always good to find a new blog that resonates with our own experience; and for new #spoonies it can be hard to locate useful information online. This directory makes it easier to get started, and for those of us who have been doing “this” for a while, its a good source of new blogs to follow.
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By wendy, on August 10th, 2012%
 My latest book review column is available! Understanding Women with AD/HD was a fascinating read, and I had a very specific reason for choosing it. I like browsing books on Amazon, because many of them allow you to preview the table of contents and some of the other stuff; and when I previewed this one I noticed a chapter on fibromyalgia included in the section on associated disorders.
Since I’ve struggled with fibromyalgia for the past 15 years or so, that really caught my attention, especially since the reading I’ve been doing on AD/HD makes me suspect that my bipolar diagnosis may not be accurate . . . My symptoms (and history) seem to fit much better with an AD/HD diagnosis, so I’ve been trying some of the strategies in the books to see if they help. (I figure whether or not I have it, if the strategies help me, it’s a good thing.)
So anyway, back to the connection between AD/HD and fibromyalgia. The chapter on fibro provides an excellent explanation of how stress and fibromyalgia are interconnected; including explanations of how the limbic system and the Hypothalamic-Pituitary-Adrenal (HPA) axis work, how they’re affected by stress, and how that ties into fibromyalgia (dysfunction of the HPA axis is suspected to play a large part in fibromyalgia.) Continue reading Fibromyalgia & ADD are Related?? — Really? »
By wendy, on May 30th, 2012%
 English: MLK Memorial, Washington, DC: Passing through the "Mountain of Despair" to the "Stone of Hope" (Photo credit: Wikipedia)
By Wendy Burnett
(This post was written for the June PFAM (Patients for a Moment) Blog Carnival, which is now live and being hosted on ChronicBabe.com)
“Life sucks, and then you die” – unknown
Normally, I don’t believe this, but lately I’ve been having a SERIOUS “life sucks” period. Things have been extremely difficult since I lost my job, insurance, and home in 2008; but we’ve been surviving, and there have been some pretty good things that have happened during the last 4 years so it wasn’t all bad.
Those of you who have been following this blog, and/or interact with me on Facebook, probably know that we’ve been renting a converted garage from friends since we lost our house. It’s not a great situation, we don’t have kitchen or bathing facilities down here (we have to go up to the main house to cook or bathe;) and it’s small, cramped, and dark. On the other hand; it’s close enough to my part-time job that I can walk to work, our roommates/landlords have been really awesome about letting us pay late if our checks aren’t enough to cover the rent that week and letting us borrow their car to get hubby back and forth to work, and it’s close to public transportation.
Financially, it’s been a real strain though . . . the job situation in the city is really bad, so there’s a lot of competition. For people like us; older (I’m over 50,) with spotty work records due to illnesses, etc.; there aren’t many options except part-time, low-wage retail work that doesn’t pay enough to live on; and even those jobs are almost impossible to find.
Hubby works for a retail crafts store that gives him an average of 11 hours a week. (In other words, he makes $50 to $75 a week, and it took 6 months to find THAT job.) This confuses me – why hire 6 people to split hours between when you could hire 3, give them 20 to 25 hours a week, and they MIGHT actually be able to eat? They’d still be part-time, so you still get he benefits of hiring part-time workers instead of full time ones, but your employees have a better chance at a semi-decent life and the turnover isn’t as high.
My job is a little better, since I average 25 to 30 hours a week, and I’ve been there 2 years so I’ve gone from minimum wage to $8.50 an hour. The problem is, it’s very physical so it keeps my pain levels higher than they are on days I don’t work; and it’s customer service, which is very stressful and also triggers my fibromyalgia. Even worse; we barely manage to cover rent, food and a few OTC remedies for my physical issues; so the financial stresses are HUGE; and because there’s no money to pay anything on debts from before I lost my $60,000 a year job, I’ve been garnished. Even if I was physically able to work more hours, it would make absolutely no difference to my income because every penny I make over $186 a week is taken away. (That does NOT mean I can count on $186 a week though. If I’m sick or hurt and have to call out, I don’t get paid; and there’s at least one week a month that I only get 16 to 20 hours, which works out to a take home pay of $75 to $150.)
So where does the starting over come into all of this? That’s complicated . . . Continue reading Starting Over is a B**ch »
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 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, also known as Lou Gehrig’s disease) 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 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 »
By wendy, on April 13th, 2011%
Of all the symptoms of fibromyalgia I have to deal with on a daily basis, FibroFog is absolutely the worst for me. I can deal with pain and stiffness, I’ve adjusted to always being exhausted, anxiety and stress are a constant undercurrent, but feeling like I’m losing my mind? THAT one bugs me.
I have to use lists constantly, or I’ll walk out of the house without my head one of these days. (Of course, a list does a lot more good if I can actually find it.) I have to laugh most of the time, because some of the things I forget are just SO ridiculous . . .
Have you ever gotten half way to work and realized you forgot to put on your bra? I have. Funny? Yes. Irritating? Even more so. I probably could have gotten away with it, considering it was in the winter and I was wearing three layers of clothes, but still . . . not appropriate. Besides, try explaining to your male boss that the reason you’re half an hour late is because you walked halfway to work before you realized you’d forgotten your bra and had to go back and put it on. NOT fun. Funny, yes, even hilarious, but definitely not fun. Continue reading FibroFOG – The WORST Symptom Ever? »
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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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