The chronic illness-depression connection

September 28, 2012

A friend of mine does suicide prevention work.  And she needs your help.

From time to time I pass along information to my friend that I think might be useful.  Sometimes it’s a blog post, or a tweetchat, or just an idea.  Other friends do it too, to give her ideas for new angles.  Recently I sent her a blog post from someone else’s blog that I thought might be helpful and she wrote back and asked if I’d give my personal perspective on living with a chronic illness.  I’ve always been completely open about my health stuff when someone asks, but I don’t talk about it too much otherwise.  I’m not trying to hide anything, I just want to focus on things other than my health sometimes.  So when we met up this week, I found that first I had to explain what it really means to have a chronic illness.

We met up in person to talk about chronic illness and its intersection with depression.  This is an area that gets talked about a lot in chronic illness circles, but I don’t hear much about it in mainstream mental health care.  As it turns out, they do talk about it in her office, but she didn’t feel they’d examined it thoroughly.  So we talked for over an hour and we covered a lot of areas.  We talked about the depression that is a part of the illness, the depression that’s a side effect of medications, and the depression that comes from the pain, isolation, frustration, etc.

I talked about being told the symptoms are all in our heads, about the self doubt, and about not having a diagnosis for years or decades.  I talked about the strain it puts on relationships and the difficulty dating.  I talked about the lack of control over my present and the lack of control over my future.  I talked about rare conditions taking longer to get a diagnosis, but then not having support groups available after diagnosis because of the condition’s rarity.  We talked about chronic illness causing PTSD.  We discussed autoimmune-type diseases versus more well-known chronic illnesses such as heart disease or diabetes.  We talked about society’s judgment on us: society saying that we caused our illness or that we’re worthless because we can’t work at a job, etc.  We talked about stigma from government and from individuals.  I talked about our own feelings of worthlessness.  I talked about wanting to contribute to society in some way.  We discussed how hard it can be to connect with family and friends when we can’t do “normal” activities.  We talked about how hard it is to “keep a positive attitude” when the truth, the reality, is that things will not get better, and they will most likely get worse.  And of course we talked about the 5 stages of grief.

She was blown away by all of this.  When I talked about being in pain all the time until a few years ago, it became clear that she hadn’t realized that it was literally all the time.  When I talked about the relief of having a few minutes at a time without pain, she was shocked.  This is a woman who has always tried to understand, but she simply didn’t because no one had ever really explained it to her.  Now she’s learned a bit more.  And of course, she wants to help.  She can not help with the physical symptoms, but she can create practitioner trainings and outreach programs and also write on her blog in order to help our mental health.  And in return, we can help her.

So here’s where you can help.  I am only one person.  I told my friend about my own experiences and about those of some others in the community, but of course I can’t talk about everyone, nor should I.  Instead, I encourage you to talk about how your chronic illness affects your mental health and vice versa.  Write a line or 2 or 20.  Comment here, email me (msrants at gmail dot com) or write to me on Twitter (@CIRants) and I’ll be sure she sees it.  This is a good chance to assist someone who wants to help our community, so let’s give it our all!

Part of the email from my friend:

In my work, we do talk about chronic pain and illness in relation to suicide, but we haven’t done a thorough job of examining the issue, I believe because we’re not sure the best approach to take…. I’d love to talk with you about ideas/approaches for addressing this issue and possible interventions/programs. Or, if you know of folks you think would be good to talk with – people living with chronic conditions, health care providers, etc. who I should talk with, please let me know.

My invisible chronic illness is never really invisible

September 24, 2012

I have multiple chronic illnesses, and technically they’re all “invisible” chronic illnesses, but to me they always feel visible.

Ok, I admit that a stranger might not notice anything at first glance, but someone who knows me well should see the signs.  I feel like they’re incredibly obvious.  I don’t use a cane or a wheelchair or any other aide, but the signs still scream out.  Sometimes it’s a tiny limp, or a grimace when something hurts.  My face could be flushed or pale.  It could be the way I lay my hands in my lap, palm up with the fingers curled, in a very unnatural way, but the only way that won’t cause excruciating pain.  There’s the way I might be sitting in a chair, and when I cross my legs I have to use my hands to pick up one leg and move it over the other.  How could people miss these signs?

And then, when all else fails, there’s always my eyes.  I admit, some days are worse than others.  Some days my eyes might not betray anything, or maybe there will only be a hint.  But then there are the other days….

Yesterday was exhausting.  It was stressful and happy, fun and tiring.  By the end, though, I was fatigued and every muscle hurt – I’d overdone it.  If I had thought about it, I would have expected to look bad, but why would I think about it?  It never crossed my mind until I was getting ready for bed.  I went into the bathroom, stood in front of the sink to brush my teeth, and did a double-take when I looked in the mirror.  I looked that bad.  My skin was burned and dry, my shoulders were hunched and sagging at the same time somehow, my hair was sticking out in all directions.  But my eyes.  My eyes showed it all.

My eyes were sad.  They were a bit puffy and swollen, so they weren’t open all the way.  One was less open than the other, which doesn’t happen unless I feel this bad.  The lids were extra wrinkled.  They were glassy.  They were just wrong.

Logically I understand how these “little” things can be overlooked by someone who is not watching for them.  I get that.  And at the same time, I feel like my body is shouting out the signs: LOOK HERE!  SHE’S REALLY SICK!  IT’S NOT INVISIBLE AT ALL!  But then, it’s never truly invisible to someone who’s really looking, is it?

Saturday night slump

September 22, 2012

It’s Saturday night and I’m the pathetic “friend” checking status updates on Facebook.  It’s 9pm on a Saturday and I’m at my computer.  I have plans.  Well, I had plans.  There’s a huge, once-a-year event that I love, and this year, for the first time, it’s just a short walk from my apartment!  I really want to go.  But I’m so tired.  And I have to be up early tomorrow.  But I want to go.  But I have to be up early tomorrow.  And I’m tired.  But it’s only once a year.

Sound familiar?  I’m sure most of you have experienced this.  I’ve certainly written about it before.  And a bit more recently, too.  And it still sucks.  I don’t expect to go out every night.  I don’t even expect to go out every Saturday night.  I just want to go out tonight.  I guess that’s asking too much.

Now in fairness, I actually could go out tonight.  I could throw on some halfway-decent clothes, walk five minutes, and hang out with friends and new people.  I could flirt with some cuties (there will be a lot of single people there, and while I’m not in a good place in my life to date now, some flirting could be fun.)  I could have a lovely time, then come home at a reasonable hour and get some sleep.  So why don’t I do this?  Well first, I’m so run down, I don’t know that I have the energy to flirt and chat with people I don’t know.  Plus, I really do have to get up early and be active (active by my standards, at least) tomorrow.  I should have planned that better, but I had forgotten to put tonight’s event in my calendar, so I forgot about it when I made tomorrow’s unchangeable plans.  I went out last night, so it’s not like I’ve been stuck at home for days, which happens sometimes.  But I’m still just frustrated.  I was inside all day yesterday until I went out at night.  Since then, I’ve been inside all day today.  I missed the sunny weather.  I’m missing the fun tonight.  I feel like I’m missing my own life.

I want to think this is temporary.  And let’s be honest: a few months ago I wouldn’t have been able to go out to last night’s thing either, so I’m making huge progress!  And there will be another event next year.  Maybe I should put that in my calendar now.  But then, what if it isn’t temporary?

I feel like I should apologize to you.  I sound like a whiny kid, all upset because I’m only getting some of what I want.  And that’s true.  As we all know, when you’re living with a chronic illness, there’s a lot you don’t get.  Sometimes I can handle it, sometimes I can’t.  Today isn’t one of the better times, but I’ll get through it and life will go on because really, what other choice is there?  So tomorrow I’ll be a happy, mature adult.  But for tonight, I think I’ll indulge in a bit more whining.

The joy and joint pain of autumn

September 18, 2012

I love autumn.  The heat and humidity of summer are gone, and with them a lot of my extra fatigue and other symptoms have gone.  And it’s pretty.  The sky is clear most days, the leaves change colors (they’re just beginning now,) and the air is crisp.  I’m happy every time I look out the window and see the lovely weather.  This picture is from last year, but you get the idea.

Of course, right now we’re in a transitional time.  Right now, summer is mostly over, but not quite.  And it’s mostly autumn, but not entirely.  We haven’t transitioned completely to the cool days yet.  Sometimes I’m hot in a t-shirt and sometimes I need a sweater.  It’s mixed.

And we all know what that means, right?  If you don’t experience worsening symptoms during spring and fall, then you’ve probably heard from others who do.  My rheumatologist says that her phone rings constantly in the spring and fall.

For me, spring is definitely worse.  My body seems to know that bad times are coming, with summer on the way, so it goes haywire.  But autumn isn’t the easiest thing either.  For the last couple of weeks, it seems to have manifested itself as worsening joint pain, especially in my fingers and wrists.  Now, I’ve had pain in these areas for more than 20 years, so it’s not like I can’t handle the pain itself.  What’s bothering me is that no movement causes stiffness, and small movements from fidgeting makes it worse.  Big movements are good, like washing dishes or cooking or sorting through a pile of books (as long as they aren’t too heavy.)  And the problem is that I just don’t have enough of these big movements to keep my joints happy.  I’m home a lot these days, so I’m open to suggestions for things I can do at home to keep my fingers and joints useful without using up too many of my spoons.  Typing on the computer or reading or watching tv all seem to be bad things for my achy hands, and that’s how I usually fill my days, so I’d love some new ideas.

How’s autumn for you?  Is it a rough transition, or is your body just glad to be out of summer?

Good luck during the changing of the seasons CI folks!  At least it’s pretty.

The oh-I-could-never-do-that response

September 17, 2012

Sometimes we do things that are hard.  Occasionally something is easy, but often it’s hard.  Very hard.  Damn hard.  We do it to improve our health.

So why do we do these difficult things?  Are we gluttons for punishment?  Do we enjoy the challenge?  Are we masochists?

Or are we people in pain?

Yeah, that’s what I thought.  The last one, right?  Me too.

And that’s why it pisses me off when someone hears that I’m eating a very restricted diet, or that I live with constant pain, or that buying groceries on a bad day is a huge effort, and their response is “Oh, I could never do that.”

At this point I figure they say this for one of two reasons (but please let me know if you think of another!):

  1. They don’t believe that my symptoms are as bad as I say they are.
  2. They can not possibly imagine how bad my symptoms are, because they have no frame of reference.

I want to believe that it is usually #2, that they just can’t imagine daily nausea that is so bad, you’re willing to cut your favorite foods out of your diet to be rid of it.  But really…. who couldn’t imagine that?  And if it’s #1, that just pisses me off to no end.  After all, these aren’t strangers, these are friends and family who are saying this.  They aren’t suggesting that it isn’t worth it for me to try these “drastic” measures of changing my diet or trying new supplements, but they say that they would never be able to do it.  Maybe they’re trying to suggest that they’re too weak to try and therefore I’m strong?  But in the context, that’s not how it sounds.  It sounds like the pain could never be so bad that it would be worth giving up desserts on the off chance that it might help.

So for all of you doubters out there, have someone whack you as hard as they can in the knee a few times with a hammer.  Now, would you rather have someone do that every hour, or would you rather give up chocolate forever?

Yeah, I thought so.

Could I be healthy?

September 13, 2012

When I wrote a couple weeks ago about being hopeful that maybe my health could improve one day, that was based on my own gut feeling (so to speak) that I could get better.  My doctors have not expressed that kind of hope in many years.  My new naturopath has seemed more optimistic, but she has never spoken about our end goal, and I was not ready to ask.  I was afraid to ask.

Today I steeled myself.  I took a deep breath.  I stared blankly at a spot on the opposite wall.  And I asked: “What do you think my prognosis is?  What’s our goal?”

She surprised me with her answer: “That you’ll go back to work, and that at the end of the work day you’ll still feel good and be able to do things.  That you’ll go out and do things on weekends.”

Obviously she misunderstood, so I clarified: “No, I mean, what’s our realistic goal?”

Imagine my shock when she said that yes, that’s the realistic goal.  So of course I asked when she thinks that might happen.

“Within about 1 year from now I expect you’ll be back at work.”

What?!?  I had figured she had a positive outlook for my recovery, but this was more than I had expected.  I didn’t quite believe it, and I still don’t.  1 year seems like such a short time.  After all these years of my body destroying itself, could I really be “cured” in 1 year?  Of course, I wouldn’t really be “cured,” but to be so much healthier seems like the ultimate cure to me.

Of course, she thinks that 1 year is too long.  She practically apologized, explaining that if I had gotten treatment sooner, before my conditions had taken such a toll on my body, then she could have reversed their affects more quickly.  Still, she has helped me more in the last 3 months than my other doctors have in the last 8 years.  And she says that we’ve “only scratched the surface” in terms of treating me.  So maybe it’s possible?

1 year.  12 months.  I can’t seem to grasp this.  Could it be possible?  Could I be relatively “healthy”?  Could I work full time and support myself, and still have the energy to see friends, pursue hobbies, date?  It just doesn’t seem possible.  When I wrote about my hopes before, they felt like a far-off dream.  I figured maybe in a few years, if I was lucky…. but 1 year?  That feels so soon.  Next fall.  Dare I hope?  What if it doesn’t happen?  Would I be too crushed?  But then, what if it does?

Some people dream of buying a bigger house, or driving a fancy car, or flying all over the world in a private jet.  I only want my health and my loved ones.  Could I really be within reach of having it all?  Could I be healthy?

Fire under my ass: Social security application DONE

September 11, 2012

It’s amazing what a little fear will do.  I was dragging my feet.  I admit it.  I didn’t really want to apply for SSDI; I didn’t want to admit that I’d still need it a year or two from now when they finally got around to approving my application.  You can’t really blame me,
right?  Who wants to think that way?  So I procrastinated too much before finally sending in the first part of the application, and then I got bulldozed with a short deadline for all the rest.

There’s nothing like getting informed that your future ability to pay rent is based on information you must complete right away, but it’s after 5pm on a Friday so you have to wait two and a half days to get details.  Not fun.  At all.

First thing Monday I called the SSA and got all sorts of details from them that really should have been included in the letter to begin with.  Now, surprisingly, I’m done.  I managed to get a document from my ex-employer’s benefits office and I got it in record time.  Apparently, when you complain to the head of the department about someone not returning calls at all, they tend to call you back quickly the next time you need something.  Thank goodness.  She emailed it to me, I printed it, and  I drove it over to the social security office in person today to drop it off.  I started the second application online over the weekend and made a list of questions for my lawyer, who also got back to me quickly on Monday.  Today, I submitted that application!

And now, I wait.  When I submitted the application I got the message that I’d have a response in more or less 120 days.  I guess they want to leave themselves some leeway, because they specifically said it could take more or less time, depending on various unnamed factors.  Right.  I’m not holding my breath for that 120 day response, but whatever it is, I’ll just have to take it.  At least this part is done.  Now to move on to the next set of paperwork….

It amazes me that there’s no one central location to find out about all of this stuff – what paperwork is needed, when the deadlines are, etc.  A friend suggested that I make a web site with all of the info I can find.  I just might do that, but first, does anyone know of one that already exists.  I’ve looked, but I could have easily missed it, and there’s no point replicating someone else’s work.  If you’ve seen one, please let me know!

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