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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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 . . . »
(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 . . .)
Does having bipolar disorder automatically mean I’m not in pain, or that my pain should not be treated? Does the fact that someone has been addicted to something in the past mean that they should have to suffer excruciating pain for the rest of their lives to prevent readdiction to a new medication? If someone is dying of cancer, what difference does it make if they become addicted to the pain medication that makes their death less painful, that allows them to have a little relief?
Our society has become so terrified by the picture of the crazed, murderous addict that the government has painted for us that we will allow them to do almost anything to protect us, even though in the vast majority of cases that picture is no more than government propaganda.
The government has lost the war against drugs, they have no hope of ever being able to stop the illegal flow of drugs into this country, so they have changed their propaganda, and their targets. The war on drugs has become a war against chronic pain patients and the few remaining doctors who are willing to treat them.
Doctors are being persecuted (AND prosecuted) for trying to provide adequate treatment for their patients, and for every doctor who is prosecuted, many more begin refusing to prescribe the pain medications that make our lives worth living because of the fear that they will be next. Continue reading Killing Me Softly – The War on Drugs Becomes a War Against Adequate Treatment of Chronic Pain Conditions »
According to a recently released research study (Mortality in fibromyalgia: An 8,186 Patient Study Over 35 Years,) having fibromyalgia increases the chance that someone will commit suicide. I don’t understand exactly how much the risk increases, since the study provides an odds ratio rather than relative risk, but the simple fact that suicide is more likely is frightening enough. (The risk of accidental death was also higher in the fibromyalgia patients, which I’m guessing is at least partially related to “fibro fog” issues like forgetting whether you’ve taken your meds and accidentally taking an overdose.)
I totally understand why this is true, since my fibro has frequently triggered suicidal depressions for me, for various reasons. When I was first diagnosed, the total lack of understanding and support from my then-husband, combined with the lack of anyone in my life who DID understand and the terror of facing a life of pain and disability; threw me into a months long depression that only grew deeper as I dealt with the losses that came with the illness. I spent hours every day wishing I could die, and knowing that the fibromyalgia wouldn’t kill me.
There have been many more depressions since then, most related to the fibromyalgia in some way, even when it wasn’t the direct cause. The most recent one started 3 YEARS ago, Continue reading Fibromyalgia Increases Suicide Risk – Chronic Illness, Stress, and Depression Part II »
Depression has been a huge part of my life for so long that if it was suddenly taken away, I honestly wouldn’t know how to live. Even on the good days, it’s a constant, hovering just beneath the surface, waiting for the tiniest gap to escape through.
Peel an onion, and separate the layers. Take a good look at that delicate, transparent membrane between them; at how thin it is, how easily it’s torn. Something like that membrane is all that separates me from the depression that lives inside me like a monster, waiting its chance to tear through and eat every bit of happiness, every bit of hope, and every bit of energy I have.
Although I’ve been diagnosed as bipolar (accurately, I think;) my depressions tend to be situational depressions, not bipolar depressions. It may sound like semantics, or even denial, but there really is a major difference between the two. Continue reading Chronic Illness, Stress and Depression »
It’s National Suicide Prevention Week, and today is World Suicide Prevention Day. If you know someone who is suicidal, reach out, help them find help.
If YOU are suicidal, you need to know that you are not alone. There are many of us who have been where you are and come out on the other side. I’ve been there myself, more times than I can count, starting when I was 5 years old; and I’ve learned that if you can hold on, if you can reach out, it ALWAYS gets better.
Life is change, and EVERYTHING changes, even the misery you feel. There are people out there who can help, who WILL help. No matter what you think, your family and friends will NOT be better off without you, and your death will cause more pain and devastation in their lives than you could EVER cause by staying alive.
If you’re considering killing yourself, if you’ve started planning, even if you’re just thinking that things would be easier if you were dead, read this first. This article provides tons of ways to get help, and links to places you can connect with others that feel the way you do. Read the article, check out the links, maybe call one of the hotlines and actually talk to someone who understands what you’re going through.
The Suicide Project is another great place to connect with others who have been where you are, and read the stories of those who have been affected by the suicide of someone they love.
These two sites have saved my life more than once, by helping me find the resources I needed, and they can help you, too. Please, just check them out. It won’t take long, and death will always wait for you as it waits for all of us eventually.
on white sheets
or blue steel
and red blood
I fear it
and desire it
or continued suffering
or the pain
I wrote this in 2001, and it has been true for me many times, both before and since. I’m sure it will be true for me again, but I’m also sure that when it is, I will find the help I need to get me through, one more time. The help is out there, all you have to do is ask. Please give life one more chance, please ask.