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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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? »
052/365 Displaying Elation (Photo credit: kurichan+)
I’ve been pretty quiet lately, mostly because I’ve been working on a few projects, and didn’t want to “jinx” anything, or talk about something that might not work out.
I’ve been working on an e-book for a client, which is taking a good bit of my time with research, etc; but the real excitement today is my new collaboration with PsyWeb.com. I’ll be doing book reviews of mental health/self improvement focused books for them, and my first review posted today! Check it out here: Driven to Distraction: Recognizing and Coping with Attention Deficit Disorder From Childhood Through Adulthood.
This is going to be a regular column, but I’m not sure exactly what the schedule will be yet. I’m planning on once a week, but I’m not sure if it will get posted on the same day each week or not.
There will be a list of links to my reviews provided in the sidebar of this site, and they’ll also be posted on my Facebook page, Transform Your Chronic Life, and on my Twitter account. (And anywhere else I can think of to “brag.” LOL)
If you have a book you’d like to see reviewed, you can contact me here. I accept review copies, pdf and kindle versions; and am working on being able to read other ebook formats as well. (Books that aren’t appropriate for PsyWeb will be reviewed on this site.)
|If you’ve found the content on this website helpful, and you can afford to, please consider making a contribution to help keep the content coming and the site online.
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 »
Depression 1 ARB (Photo credit: Wikipedia)
By Wendy Burnett
I was checking the stream on one of my social media accounts a bit ago when I found an update from one of my friends containing the most terrifying description of a medication side-effect I have ever seen. There are many prescription medications that have the following warning:
X may cause suicidal thoughts or actions in a very small number of people. Call your doctor right away if you have new or worsening depression, suicidal thoughts or actions, or unusual changes in mood or behavior.”
I thought it was important for those who might be given one of these meds to see this, so I got permission to post it here. The clinical warning is so bland that it gives no real understanding of what it means to have suicidal thoughts, what kinds of feelings come with them, or how to recognize what’s happening to you. This description will help you recognize when you need to get help.
“Hi again you guys. I don’t know if anybody really notices or appreciates these updates but perhaps they’ll help somebody at some point which is why I keep thinking I should write it all down. If it ever gets bothersome please let me know, and I will stop talking about it or remove you from this circle or whatever. I don’t want to annoy anybody, but I keep thinking… What if there’s somebody else out there? What if they are having the same kind of trouble? What if knowing that I did too could help them? I am mildly anxious to tell this story because I sincerely believe, for probably the only time in my adult life, that I almost died because of a medication’s side effects. Continue reading Suicidal? It May Be Your Medication . . . »
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 Burnett
I read this awesome post about The Loneliness of Pain
and it really made me think about how isolated I feel sometimes. Even though I have people in my life that I CAN talk to about how bad I feel, I frequently choose not to for various reasons.
Have you done that? I’m betting that most of us have, either because we’re afraid that eventually these folks are going to get tired of “listening to us bitch,” or because we don’t want them to feel bad. There are more reasons, but most of them seem to boil down to one or the other of these two. Continue reading (Chronic Illness) = Loneliness + Isolation »
(Disclosure notice: Links to product pages in this post are affiliate links, and if you make a purchase using one, I will receive a payment. If you enjoy this blog and intend to make a purchase, I would greatly appreciate your use of my links to do so. It will not affect the price you pay, and will help me keep this blog online.)
Chronic illnesses tend to wreak havoc with family finances. Between the cost of treatment, and the reduction in the ability to work; having an illness like fibromyalgia, bipolar disorder, myalgic encephalitis (chronic fatigue syndrome,) lupus, migraines, or any of the thousands of others out there can destroy a family’s financial security and severely limit the ability to provide traditional healthcare.
My illnesses have put me in the position of not being able to afford the several hundred dollars a month I was spending on medications with my insurance (and with the insurance we have now, the more than $1000 a month they would cost would take pretty much our entire income,) so I’ve had to find other options.
It’s been an interesting journey, and there have been times when I’ve seriously considered just killing myself and getting it over with (mostly during the forced withdrawal from the psychiatric meds I used to be on for my bipolar disorder.) I’ve reached a point now where I’ve found enough other options to manage fairly well, and I’m actually happier without the prescriptions than I was with them. (Even if I hit the lottery tomorrow, I wouldn’t go back to taking all the stuff I used to be on.)
It’s more work than just popping a handful of pills several times a day, but using herbs and aromatherapy to treat my symptoms is also very satisfying. I have much more control of what I’m putting into my body, I’m supporting the natural processes my body uses to heal itself rather than subverting them, and I’m not dealing with multiple side-effects that have to be treated with yet another expensive medication that comes with its own set of side-effects.
Natural treatments do take longer to “kick-in,” and I sometimes deal with slightly higher pain levels than I would if I could just take a heavy-duty pain-killer, but I don’t have to worry about becoming dependent on most of the herbal treatments I use, either. (Which also means that I don’t have to worry about withdrawal symptoms if I switch things around or run out of something.)
There are several herbs that I make certain I always have on hand, and as I promised in part 1, those are the ones I’m going to focus on in this post.
Disclaimer: I am not a doctor, and nothing I say in this post is intended as medical advice. If you find the idea of using herbs in your treatment plan intriguing, be sure to do the research and discuss any changes or additions with your healthcare provider to ensure your safety.
Making Skullcap Capsules
Skullcap: I use this one for pain reduction (it has actually helped more with my sprained shoulder than the Lortabs the doctor prescribed,) stress reduction, and help sleeping. I try to get it online, from Mountain Rose Herbs, because it’s half the price that I pay at the organic grocery down the street. ($15 a pound, as opposed to $30; so even after I pay for shipping, I save money.)
It works well for headaches (especially tension headaches,) and muscle pain; and in combination with other anti-inflammatory herbs like ginger and turmeric, it also helps with my arthritis/fibromyalgia pain. Continue reading Making My Own “Medicine” – Part 2 »
I’ve been seriously slacking lately. Between the router issues (see my previous post,) work stress, and depression; I haven’t been able to write nearly as much as I’d like in the last few weeks, and I’ve gotten really behind.
The new Graceful Agony Blog Carnival, Who Turned Out the Lights?, went live on the Sept. 20th. Not being able to get online much meant it took me over a week to read all the posts, but they were really worth the wait. Continue reading Graceful Agony Blog Carnival – Depression & Chronic Illness »
I’ve been pretty much offline for about two weeks now, since our router died and we were down to sharing the single network cable coming from the main house. Hubby gets super cranky when he doesn’t have the net, so when he was home, he was the one connected.
He kept telling me I could use it, but he’s not really good at keeping himself occupied without the net. If he’s home and I’m connected, there are constant interruptions and I don’t get anything accomplished anyway. It’s just easier for me to wait for him to go to sleep or work.
Anyway, to make a long story short(er), my online time was so limited that all I managed to do was sort of keep up with my email, and check in with the folks that worry if they don’t hear from me.
The couple of posts I did manage to publish were mostly written offline, then pasted in and touched up. It’s really hard for me to write offline though, because I nearly always need to look things up or refer to articles that inspired a post.
A dear friend sent us a “new” router, and I finally managed to get it set up and working Sunday, so I’ll be able to finish the posts that I’ve been working on, but it may take me a while since I’m dealing with some heavy stress and depression right now. (Both of which cause writer’s block for me . . .)