Good days and bad days
Having a good morning? Or afternoon? Not sure?
Is the boss driving you nuts? Your kids? Your parents? Your nosy neighbor? Maybe it’s your ex. Or the damn dog that keeps peeing on the rug, in the same spot, no matter how many times you walk him. Perhaps you’re sick of the (ho-hum) marital bed, significant other bed, or the empty bed. Or sick of your body – and I don’t mean how it looks in the mirror (though most of us have those days), but the way it responds – or doesn’t – on good days and bad.
What if you’re not feeling well? Again? Still?
Chronic illness – What if every day is a bad day?
We all have down days. Some of us have more than others, and we have our reasons. I am grateful that I have children who depend on me to be the “rock” because I can’t throw in the towel even if I wanted to. And trust me, there are plenty of days when that’s exactly what I want.
A few more of those hypotheticals?
- What if every morning, as soon as you wake up, you’re exhausted? Or in pain?
- What if the sleep you’ve had is interrupted, restless, physically uncomfortable, and anything but renewing?
- What if you’re living with a chronic illness, or several, or chronic pain from an injury or surgery?
- What if these “what if’s” aren’t hypothetical, but the fabric of your life, every day, for years?
- What if you don’t have family or friends to help, or insurance?
- What if your relationship, your marriage, your parenting, and your job depend on your ability to pretend that everything is fine, even though your body is screaming that it’s not?
- Think you might be a little, um, depressed?
Depression, wellness, and assumptions
Sure, plenty of days my sense of woe is worsened by the infinite piles of laundry. By the dishes. By the stacks of bills that have spread across my kitchen table like an invading force. Then there’s the dust gathering on my stilettos and the reality that my “marketability” in both the workforce and the dating pool is significantly narrowed by my chronological age not to mention my overwhelming sense that I cannot manage one more task, burden, request or complication in my frazzled, fatigued little world.
Even the strappy sandals don’t help!
And I look around and think: Is this all there is?
It’s not a matter of self-pity; this is an assessment, and usually part of a recurring inner dialogue that is extremely measured in tone. Admittedly, when I’m low on sleep and not feeling up to par, I’m more likely to plunge directly off the cliff in conversations with myself over issues of health, money, isolation, commitments I cannot meet, the rapidly approaching empty nest, and even more rapidly approaching end of my credit line. These are, after all, real challenges. I cannot positive-think my way out of them.
And thus, two very quiet, very private, potentially insidious questions surface: How much longer can I survive? And then – Is this it?
The good, the bad, and the physician
Frankly, as a very courageous woman I know says it best: “I am sick and tired of feeling sick and tired.” And I know I am more likely to feel cast adrift when the doctors I see, not necessarily of my choosing, run a few routine tests and say “oh you’re fine,” and are otherwise unresponsive. Or, if I describe nearly any ache or pain, they recommend an SSRI.
Hello? Is anyone listening?
The fact is, I have no major diseases, I am relatively healthy, and for that I am enormously grateful. But I do have a medically diagnosed sleep disorder which has been wreaking havoc with my body for many months. Medications (apparently) need to be rotated in order to deal with this condition. And my one little magical medication has not been changed in 10 years.
I have been extraordinarily fortunate in that it worked more or less effectively for a decade. Best I can tell, that’s no longer the case. And all this aside, I can feel in my body that are things are going on, I am in pain, and no one is listening.
The fact that I am dismissed by a young doctor (who re-prescribed the same med), and clearly assumed me to be a middle-aged woman suffering from depression due to being out of work, oh – and possibly hormonal – is galling, outrageous, and infuriating. It is also infuriatingly common. This is exactly what I went through 15 years ago, and 14 years ago, and 12 years ago – and so on – until a very fine physician put some pieces together and had a diagnosis for me shortly thereafter, which literally gave me my life back. A life that was disappearing at the time, and terrifyingly so, as both my (then) husband and a series of other medicos continued their chorus of “you’re fine, you’re under stress, it’s all in your head.”
Physicians for wellness
I also know the other side of the coin, though perhaps we speak of it and hear of it less. Phenomenal doctors and physicians assistants – and not just for those with deep pockets. Thoughtful, experienced, caring, creative men and women who seek to make patients feel better, with a variety of solutions, in the name of wellness. Health. A participatory effort in terms of lifestyle and medications (if needed) or other treatments, discussed respectfully among people.
The physician I just spoke of was one of those exceptional doctors. He has long since moved, and presumably retired.
He is not the only fine physician I’ve known over the years; they do exist. But he is one of the very few. And in a country like ours, I find that appalling. I claim no experience other than my own, and make no judgments about the quality of medical care available in this country, generally. But when I had money, I had greater access.
I have also experienced the French healthcare system, and found greater listening, more holistic approaches, and very satisfactory results. I was treated like a person, not a demographic with or without an insurance card, an employer, or a spouse.
Stubbornly insisting on feeling well
All this aside, I believe I will find another good physician. I have the balls to say NO to those I consider of poor quality, and the stubbornness (albeit currently from bed) to search for another. I believe that good physicians exist. Here. In our country. And despite insurance companies and organizational structures that squeeze caring and skilled doctors from all sides, as they try to do the best they can, within a complex system.
I believe I will get better, and be able to get on with my life. Aging, yes – aren’t we all, if we’re lucky? – and dealing with the inevitable good days and bad days inherent in that.
And I insist on something more than waking to exhaustion and pain, sleeping a few hours, starting all over again, and popping an assortment of over-the-counter analgesics to get through a day of parenting and worrying and yes, some writing.
Just to be able to say – okay – I got through one more day.
I can still find happiness
Most of the time, I can still find some happiness.
I find it in a well-written story, in a gorgeous piece of art in a book, in the face of my son when he’s laughing, in the voice of my first-born when he calls from college for no reason except to chat. But increasingly, this isn’t enough. Pain causes depression. Being dismissed when you try to explain to a physician that you are in pain causes anger on top of depression.
What would be enough is a doctor who listens, who reads my medical records, who works with me to find a new medication if necessary and one that is affordable. One who understands the necessity of helping me battle back from 5+ months of extreme sleep deprivation. I’m certain that with sleep, over time, I will experience a lessening of other conditions that are affecting every hour of every day and tainting my mood, my mothering, my writing, my everything.
And I’m one of the fortunate ones. I know what is wrong with me, and while it is something I will have to manage my entire life, it is addressable, and manageable, and normally not a problem. (All the more reason this seems ridiculous?)
I know what I need
I simply have to find a doctor I can get to (mobility being an issue), who will work with me to restore my “systems” to the extent that it is possible. I remain stubbornly optimistic – on a good day. Then I can attend to “normal depression” over debt, underemployment, loneliness, laundry, teenage angst, car trouble, and so on. And maybe chip away at those issues and make progress. And believe me – “normal depression” is sounding pretty damn good right about now.
How many others in our society don’t even have that hope? How many go years without the ability to get a prescription, because it’s not affordable? Or without seeing a doctor – even one of questionable skill – because there is no insurance?
How many have what are known as “invisible” illnesses because they are chronic, isolating, not spoken about for fear of losing a job, and even physicians are ignorant of what they are and how to treat them? How many with invisible illnesses are marginalized until they become invisible people?
Your “is this it” moments?
Are you suffering from “is this it” moments? Are they situational? Relationships or lack thereof? Dealing with illness, injury, or chronic pain? Depression, whatever the many reasons?
Care to share a little reality in our pressure-to-perform-perky society?
- Do you have days like this?
- What makes you ask – is this it?
- How do you kick yourself out of it, if that’s possible?
- Are there circumstances where no matter what you do, the self-administered swift kick just won’t cut it?
- Then what?
Despite everything, I call upon the faces of my sons, and I am determined to stick around and parent as well as I can, as long as I can. This is not the life I envisioned for myself, but it is the life I am leading, and I will make the best of it. But there are plenty of days – and they’ve been going on for years now – when I say to myself is this it?
And by God, I don’t want the answer to be “yes.”
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In addition to being a powerful, provocative piece of writing, this post highlights an under-discussed issue that I think should be at the forefront of our national healthcare debate. Too few doctors – whether due to their own lack of interest or due to the imposition of a billing system that forces them to overschedule – take the time to listen, study, and diagnose. An emphasis is placed on arresting symptoms, rather than uncovering root causes.
When looking for a family doctor in our (relatively) new hometown, the greatest compliment I heard about one gentleman was that he is a true diagnostician – one of a not-common-enough breed of medical professionals who take or make time to treat the whole patient and not just the first symptom they see and can prescribe for.
That being said, like you, I have had the fortune to encounter a number of dedicated, brilliant, caring physicians, nurses, PAs, and LPNs. It frustrates me that their numbers seem to be shrinking rather than growing. I hope you are able to find one of them, and soon.
I would say another probing question to add to your already detailed list is, how much longer can this country’s health care system ignore the invisible people?
I don’t have a chronic illness but I am surrounded by people who do suffer with daily aches and pains. Things that I don’t understand yet try to sympathize with. I can only slightly relate to this because of how sick I become in my pregnancies. My violent vomiting results in rapid weight loss, anemia, hypoglycemia and myriad of other side effects. It is something that does not have a cure, is not understood, and is often laughed off. I can’t even explain how many times people have looked at me and said “it’s all in your head.” How degrading and hurtful!! Why would I make up such horrifying symptoms? For attention?
I do know the feeling of being alone. Of wondering “is this it?”
I have hope in the health care reform. While I disagree with how it is being conducted, I agree there is a problem that needs to be addressed. People who do not have insurance need to be protected. Health care is a right.
I just hope change comes before it’s too late.
Why is it that we’re conditioned to not show our vulnerability in this culture? And it’s true for women, as well as men. Those days when we feel crappy, and aren’t allowed to say so. If it’s okay for us to gush when things are going great, why aren’t we allowed to say I feel alone, I feel overwhelmed? Lindsey did a beautiful job of writing about PPD the other day. We’ve come to accept that, though too often mothers feel as though they can’t talk about it.
I don’t know about where you are, Amber, but where I live, whatever community I had was gone with divorce. I am not part of a community of any sort, except here, online. But people need real communities – neighbors, family, teachers, friends, spiritual communities, other parents, others who can relate to their lives. Somehow in our fractured culture, we’ve lost some of that. And I think it plays a huge role in our health and well-being. And its absence makes everything harder. I worry for our children. For what the world will look like for them. Not financially or logistically, but emotionally. What communities will still be standing.
What a brave, thought-provoking post. Thank you for sharing so openly with us. This one will stick with me for a long time.
I have chronic, low-grade depression. A few times in my life, it has intensified to major depression, but I’m thankful now to keep my depression under control thanks to medication, therapy, and reflection. It’s something I will always work on.
I certainly realize how lucky I am to have good health insurance, to be able to see a therapist and take prescription meds. Depression is definitely one of those conditions that can go undiagnosed, untreated because of stigma and insufficient healthcare coverage. I think about how fortunate I am to live in this day and age. Not that many years ago, a woman in my condition would be told to go home, get some sleep, take her vitamins, and it will pass.
Thankfully, I have a very good therapist. But I’m not entirely satisfied with my MD and have just started the process of looking for a new doc. Stressful, but hopeful at the same time. We’ll see how the search goes over the next month or so.
And thank you, Eva, for joining the discussion. “Stigma” is exactly the right word, and why in this country we stigmatize those with depression (of all sorts) makes no sense. I don’t think I know a single adult who hasn’t gone through a period of depression, or many, and some extended. We live in a society that isolates us from each other, that is fiendishly pressurized, and paints an illusion of the sorts of “acceptable” lives we should lead and people we should be. We compare ourselves to that, and we shrink away from what we do have, what we do live. Feeling somehow less worthy.
Frankly, I consider depression a rational and sane response to a culture that views hardship or the appearance of suffering as contagious, rather than an inevitable part of life. And one that can be helped if acknowledged, and dealt with – through understanding, therapy, medication, rest, change, acceptance, exercise – and any number of other elements to ease the darker side of the human condition.
What makes no sense is a system that fights us when we ask for help, and the stigma of saying I’m hurt, I’m in trouble, I’m sad.
Your words, your struggles point out just how much the health care system – not just the insurance system but the entire system – needs reform. Unfortunately, I do not see the type of comprehensive reform that is necessary happening quickly.
I am fortunate my kids have health care. I can back into some if needed but do not use it if not 100% necessary – long story. Finding a doctor, though, that listens and looks and does his/her job is almost as difficult as having insurance.
I will be back to read more comments and finish my comment as I have to run out to church with the kids.
You are very courageous, BLW. And I hope that you publish my comments. 🙂
As you know, from our email conversations, I find it incredibly frustrating not to be able to help. I have my own ‘issues’, but I’m not staring homelessness and unemployment in the face. Here you have this virtual community of sympathetic, talented women and men, who comment on your posts almost everyday. I can tell from reading some of the comments that sometimes others feel llike they want to help, too, but are not sure how.
I’m going to stick my big fat neck out and ask you — what would you like from us, if anything? We can talk about the generalities, but this is happening to you, right now. Is there anything we can do?
Delete this comment, my friend. I dare you. (grin)
Okay, Elizabeth. You made me laugh, and cry, and I didn’t delete your comment. (You must be very good with children. And short people.)
But here’s the reality – my reality – for now. I need work. I have skills, experience in a variety of fields, but for now, I’m more or less bedridden – for however long this lasts. And that’s the reality. On good days, it’s not the case. But on those good days, I cannot drive very far, due to injuries sustained in a car accident 3 years ago, coupled with fatigue. And those are the good days. On good days or bad days, I can still write, I can still think, I can still learn, I can still contribute. But I do all that from bed or the couch.
I have fancy degrees. They work against me in this market. I’m not the only one with this particular problem of “overqualified, overeducated and over 50.” There are many of us.
So who is going to hire me? (I’m not being facetious.) I spent more than a year looking for work before the sleep disorder knocked me on my ass again, and everything has spiraled downward. Prior to the layoffs I went through in the fall of 2008, I was working two full-time contractor/freelance jobs, and still not making ends meet in my very downsized post-divorce household.
This is a situation that I believe is being faced across this country. I don’t think I’m unique. Perhaps my circumstances are a little more extreme because there isn’t family to help. But what you are reading and hearing – here – is fatigue and frustration. I’m tired of fighting. I’m tired of a fucking child support system that is broken. And a health care system that is broken. And knowing I still have things to contribute and being unable to do so. I am mortified at the things my sons have had to bear, and even more so at all I’ve had to hide from them. I am furious that I cannot use my name on this blog because I am afraid that it is the kiss of death to ever having a client or a job again. Let’s hope that isn’t the case. Let’s hope that anyone looks sees and reads a mind, a fighter, a responsible woman.
Give me a laptop and a problem to solve with words and I’ll go for 20 hours on pure determination. But I don’t think that’s dropping out of the sky anytime soon. If I can get my sleep back, I believe a significant amount of my health will return. But what I need is work. Real work. Work I can do that is not far away, or work that I can do from home. Not easy to find. And there are a whole lot of other people in this situation – their variation – and far worse.
All this said – I am tired and raw enough to answer this (and yes, post your comment) – without hiding behind my usual curtain. And I will say that your kindness touches me deeply. As does the kindness and honesty of many in this virtual community.
So – who out there needs a writer, a marketer, an editor, a translator? All of the above? Who out there would hire a remote worker with 20 years of experience to work from home? Let’s consider this a curious and entertaining little question – up for grabs. Oh… and you already know I have the footwear for the job.
Meanwhile, I’ll write, because it’s what I do. And I’ll hope for a good doctor with a med that permits me a night’s sleep again, and more good days than bad ones.
🙂
Oh, BLW, you have every right to be frustrated and exhausted.
Ever since my symptoms/diagnosis over the holiday season, I’ve found that I fatigue much more quickly and take longer to bounce back. Whether it’s purely physical or due in part to an emotional toll, I’m not sure. But it sucks to wake up and feel tired already.
And as for “is this it?” I ask myself that several times a week. Really.
Thanks, TKW. I know you’re fighting your own battle – and it’s hard. Maybe it’s good just to say, on some days, that it sucks. And it’s hard. And we then we keep on going. You dust off your calphalons, and I’ll dust off my stilettos.
Elizabeth is right. I will keep an ear and an eye open to see if there are jobs out there that you could try to get.
Community is constantly changing. I am sure it will be different for our children but hopefully not in a negative way.
I’m very sorry for your health problems. I had severe depression years ago (as well as some other psychological and health ailments.) My road out was a spiritual one. Everyone is different, so I’m simply sharing my experience and not giving advice. That said, the books I read that helped me are here: http://dadshouseblog.com/2008/07/29/great-books-for-relationship-and-divorce-advice/
Of course, it took more than books for me to transform and heal.
Be well.
I bopped over here for the first time via a link in Sick and Tired. Your post really resonated with me. I especially liked the line about it not being self-pity but an evaluation of the facts.
This IS it for me, healthwise, and therefore probably financially as well, and odds are it will get worse. I may remain stable for years, but I certainly will never get better. Yet, after a year or so of contemplating this turn of events, it has somehow become ok. As I sit here right now, looking out my favorite window, surrounded by my animals, I am ok. Right just in this two seconds, I am ok.
The future may really, really suck, but right now, I am ok, and there are even joys to be had right this two seconds: Blue sky, warmth of the afghan over my legs, one of my birds (rather belatedly, I might add, since I’ve been up for over an hour!) saying “Hello!” in that soft, sexy voice of hers.
Oddly, in the last months, I have found that to be true even when I’m gasping for air or when there’s only $47.10 in the bank and $500 in bills due in the next 24 hours. I had many very good years before the progressive part of my disability kicked in, and there are times that I feel a stab of longing for some thing or other that I used to be able to do. But mostly, remembering those days has become a comfort to me. I am grateful to have had them. I wish I could say how I got here, but I’m really not sure.
Somebody once wrote that all we have is the moment between the last breath and the next one, anyway. Wish I could remember who that was.
I don’t know if I ever mentioned this before, BLW, but I left my job of 18 years in a great big cloud of depression. I figure I stayed exactly one day too many. One day shorter and I would have saved myself months of suffering. So when I think about going back to paying work (and I do think about it because of how our store has suffered in this economy) I’ve always thought that I’d have to go back to working in Auto Claims. Which means I would die. Really.
Then my girlfriend asked me to join Linkd in to help her with her profile and so I put mine up as writer/editor and there were a bunch of jobs on there. I don’t need one right now but I can’t tell you how much better I’ve felt since I saw that there were jobs (maybe some in your area?) that I’m qualified for that aren’t in my former occupation. Maybe there are some in your area or some telecommuting ones?
My “is this it?” moments come when I realize that I’m not getting anything done on my book, that I’ve made no progress since I fired my agent a year and a half ago, and then I have the disheartening thought: is this it then?
And fyi, when I took a blogging class (where I “met” Kristen) the instructor said that there’s a way to monetize your blog by selling merchandise like t-shirts and mugs with your blog name on it. Paypal, here we come!