I bought all the things… oops

How do you “thrive” with rheumatoid arthritis when you are having a severe flare up, crying several times over it because you’re freaking out wondering how you’ll go to work, irrationally lashing out at loved ones, and periodically furling your brow and trying not to vomit because of the overwhelming, mind-numbing, searing pain all over your body? BUYING STUFF!

I am a psychological bore. When things seem “out of control” to me in one way, I try to “control” them in another way. I assume my therapist goes home and seriously rolls his eyes at me after our sessions. Today I spent like… $200 on stuff like storage bins and hat boxes and such from the Container Store and Amazon.com.

You’re welcome, capitalism. You’re welcome ‘murica.

Everyone has their coping mechanisms. Most of the time, mine are really healthy. My desire to organize things when I’m really upset is generally healthy but when I’m REALLY upset it starts to pour off into a serious desire to buy things and then organize… and since I have no money to speak of, this isn’t the best thing ever. But I will say that my partner and I are in legitimately desperate need of the items I bought (including the hat boxes, believe it or not, seeing as I have about 12 fine hats and 0 hat boxes to store them in, which means there are hats laying around and my partner does not like this… nor do I, it’s cumbersome). Okay maybe I did not “NEED” need to get the vintage hat box from Knox Hats to store my favorite hat (I live in NYC and that’s a NYC-based company, isn’t that a gross, hipstery purchase) on ebay but the other cheap hat boxes I got from the Container Store were totes necessary.

Normally when we reorganize and stuff… it involves my… kind of consulting my partner. Seeing as he LIVES here and all. That’s the polite thing to do. 😛 But this time I just bought the stuff myself. I wanted the instant gratification. I didn’t want all the back and forth and what about this color and that texture crap. Hopefully he won’t be mad. Seeing as we have similar tastes and it’ll end in things looking organized and such, my guess is he’ll be happy. Right? Meh? Ut oh.


How to Deal with the Emotional Ramifications of Chronic Pain

As long as I’ve had chronic pain and migraines (from two conditions–a herniated disc and other issues in my cervical vertebrae and migraines) I’ve chased cures.  Sometimes I’ve tried to figure out exactly what was wrong with me.  Other times I’ve thought, well I can’t fix it but maybe I can at least treat the symptoms.  But somehow it didn’t occur to me until fairly recently that the incessant pain has complicated, destructive emotional consequences.  Major oversight on my part, but I don’t feel too badly about it because it’s also an oversight in the medical community.  With the exception of doctors telling you something like “your pain is in your head, you should see a psychiatrist”, have you had any medical professionals even acknowledge how draining pain can be on your emotional state, or how that can take away from your quality of life?

There are exactly zero chronic pain conditions that are improved by emotional duress.  Stress, for example, is a trigger for many migraineurs.  But let’s take my other pain condition as an example.  I have herniated discs in my cervical vertebrae, some bony spurs, and a bit of spinal stenosis.  The occipital nerve seems to have been irritated (fortunately not damaged or impeded yet), which leads to occipital neuralgia, swelling in my upper back and neck, and frequent muscle spasming.  This has been going on for about 13 years so my muscles are hyper sensitive and in pretty bad shape.  They’ve weakened and knotted.  Many of you are probably familiar with the sensation.  As a result, the top half of my body hurts unceasingly and I have a headache (a regular headache) daily.  When I am having a bad day emotionally, the pain is worse.  Why?  Because muscles tighten when someone is upset, and if you have a muscular problem, that’s going to cause more pain.  Logic.  Stress has similarly negative effects on other chronic pain conditions.  It isn’t that the pain isn’t real, it’s that stress and general emotional duress make it even worse.

You’ll find two sources of negative feelings when you’re dealing with chronic pain: the chronic pain itself and life.  Everyone in the world is familiar with the way life will occasionally take a doo doo all over you.  Someone dies, you lose a job, you’re in debt, someone cuts you off in traffic, someone cheats on you, you find out you’re allergic to chocolate; there are so many things to depress you in life.  But the emotional turmoil that comes with chronic pain differs.  It infiltrates and worms its way into every corner of your life.  Like water freezing inside a rock, it can break you apart as it grows cold and expands.  Chronic pain can ruin your finances, disturb romantic relationships, decrease your sex drive, mess with your ability to work or completely render you incapable of it, make your friends run away from you, your family avoid you, it’ll rob you of your favorite hobbies and your disposition, make it impossible to plan anything, and make you forget what it feels like to get a good night’s sleep.  You lose sight of what pain-free feels like and you may begin to envy, resent, and even despise people closest to you for what they have and how completely unaware they are of their good luck.  And lest we forget the torment of taking medications routinely.  The side effects I’ve experienced include constipation, diarrhea, nausea, vomiting, other flu-like symptoms, mental confusion (I got lost in my own neighborhood…twice), numbness in my extremities, my hair is thinning, fatigue, nightmares, weight gain, I can’t tolerate exercise without feeling like I’m going to pass out or have a heart attack, excessive sweating, dizziness, decreased sex drive, swelling, bruising, the ability to emote as I want to on my face (thanks, Botox)… I’m sure some of you have experienced these side effects and worse.

So who are you when you can’t do what you used to do, feel the way you used to feel, and you find yourself a collection of unpleasant, unsexy side effects?  Have you lost your very identity?  The answer to that is no fucking way.  You’re probably the strongest person you know.  Getting through the day is a miracle and you are tougher with every passing moment.  You might feel like you’ve lost your identity and even your humanity, but really, you’re discovering it.  Or maybe more accurately, you’re rediscovering it.  Don’t give up on yourself.

Alright.  So how do you manage to stay strong emotionally?  I have some tips that I hope will help you, as some of them have helped me.

(Emotional) Pain Management Tips

1.  Get a therapist. Yes, a psychologist.  Work hard to make your insurance company pay, and if you can’t, see if you can get your family or a close friend to help because it is worth it.  It doesn’t mean you’re crazy (but who cares anyway).  Did you know there are therapists out there who specialize in helping people with pain management?  I didn’t until a few months ago.  These are some truly sympathetic people who will believe you when you say you’re in pain (unlike some doctors and friends/family) no matter what.  They will look at you straight in the face and understand that chronic pain impacts every corner of your life.  These professionals will often have tips to help you process the emotional consequences of chronic pain.  You can dump all of your feelings on them instead of alienating the people you love most by unloading exclusively on them.  And I’m not saying don’t talk to your friends and family about your problems, just that it can get to be a little… much for them.  If you have chronic pain, you know what I’m talking about.

2.  Talk to your friends and family about what you’re going through.  Yeah okay I just said all that stuff about not dumping all over the people you love, but sometimes that’s what they’re there for.  You do need to confide in people who know and care about you on occasion.  Otherwise, how will they know why you’re so damn cranky all the time?  Plus, you may think it’s super obvious as to what you’re going through but people who don’t have chronic pain will need a lot of schooling.  They can hardly understand even if they live with you and watch you suffer on a daily basis.

3.  Forgive yourself for being cranky.  No human being could endure what you’re enduring and keep a sunny disposition all the time.  You will snap at someone and it won’t be fair to them.  Okay, you’ll be a real dick.  Pretend you give a shit about me and what I say, and take these words seriously: it is understandable, and you are forgiven.  Now forgive yourself because your self-loathing will only make things worse.

4.  Forgive others for not understanding you.  This one may give you some trouble.  I still grapple with it.  If you have chronic pain, you may expect or at least want your friends and family to understand your difficulties.  You want it desperately.  If only they understood, I’d feel better, right?  Let me try and simplify things for you:  They will never understand.  There is only so much someone can learn from observation.  Experiential knowledge seals the deal and they do not have it, and hopefully will not have it.  You must stop assuming that if you just explain it right, your mom will “get it”.  She may love you, sympathize, and wish better for you but she will have no mechanism for comprehending the true ramifications of chronic pain.  I realize how depressing that is, but if you don’t accept it, you’ll never be able to forgive them for not understanding.  And if you can’t forgive them, you may not be able to let them help you through this.  You’ll be isolated.  Don’t be a fool.  I love Simon and Garfunkel but you aren’t a rock or an island, you need people surrounding you to survive hardship.  So try to think of the situation logically when someone says something insensitive to you.  They can’t help it because they simply can’t understand.  And they probably mean well to boot.  If you find yourself desperate to be understood in an experiential way, look into chronic pain support groups.  Or refer to tip number 1 above and find a therapist who is professionally trained to handle people like us.  Hell, talk to me, I could sure use more people who grasp the tangled wreck that is living with chronic pain.  But no matter what, you will suffer if you don’t forgive the able-bodied outsiders.

5.  Apologize when you’re a dick.  Sure you blow up sometimes, and there is nobody on this planet who could put up with pain day-in and day-out without slipping, but that doesn’t mean the people in your line of fire don’t need you to apologize.  Say, “Hey so-and-so, I’m really sorry I blew up at you.  I was just really upset and stressed and blah blah blah.”  See?  Not that hard.  You aren’t apologizing because you did something that isn’t understandable, you’re saying you’re sorry that you hurt someone’s feelings.  People deserve that.  And after you apologize, don’t forget tip number 3.

6.  Learn to meditate/find your power animal/whatever hippie thing teaches you how to be mindful:  Mindfulness is a very useful tool in dealing with pain.  It might be described as extreme focusing or wiping away the majority of your thoughts for a brief time.  If you have chronic pain, you know that the times when the planets align and you feel better for a short while are very alluring and give you the strength to keep on keepin’ on.  It isn’t mumbo jumbo, there’s no magic involved here.  It’s learning to control your own mind and awareness of internal and external influences.  To an extent, you can learn to regulate which of those influences you deem noteworthy and which are not.  I find myself thinking about pain constantly, so forcing myself to think about the smell of rain on the wind or the sound of an A/C unit humming for a while can often break a cycle of thought that is unhealthy and rather painful.  Think of it as taking a hot bath with some lovely naked people of your gender of choice in a dimly lit room surrounded with rose petals and candles, comfort food in one hand and your favorite beverage in the other… but, you know, for your brain.  And realize that there are a number of ways to achieve mindfulness and only one of them is traditional meditation.  I’m trying to learn “walking meditation” at the moment because that’s the way I often travel here in NYC.  Google mindfulness and see if any methods to it seem appealing to you.  It can’t hurt you.

7.  Isolate what you can do, and do the hell out of it:  I can’t help but draw a parallel between people with chronic pain and people newly retired. Retirees can find themselves limited somewhat by their age and the accompanying infirmities, and feeling kind of down about it (gee I wonder why).  Some of them crawl into a cubby hole with a shitty television and a collection of ceramic cats and wither away.  Others freak us all out by accomplishing feats seemingly impossible for someone “their age”.  My boyfriend’s father retired not that long ago.  He began going to the gym all the time and regulated his blood pressure and cholesterol.  Then he learned how to paint.  WELL.  I mean really well.  I mean that the man has been submitting paintings to competitions and winning.  He is 70 and I think he lives more than I do.  We can all learn from this man.  Chronic pain folk can get distracted by what’s been taken away, but if you are still alive, there is likely something special you can do on your good days.  Do you love cooking and you’re still able-bodied enough to do it?  Well get at it, buddy.  Perfect your turkey meatballs and let all those around you marvel at your culinary splendor.  Bake the world’s best lemon meringue pie (please invite me over).  If that’s too arduous, maybe you can learn how to knit.  My Aunt Nata had to have most of her cervical vertebrae fused and she focused a lot of her energy on knitting.  Obviously the woman has pain issues.  Now she’s a knitting goddess and all of us pretty much wait for the holiday season solely to hopefully receive something she made for us.  She creates her own patterns, and since she has the brain of an evil genius they’re often complicated and mathematically conceived.  Like this one, which she playfully named Heliotaxis Pi Shawl:

Nata's shawl

Scary, right?  Don’t think you’re any different than my super awesome Aunt Nata.  There’s something inside you waiting to come out, something that is completely amazing at ____ and all you need to do is get to painting, practicing, cooking… whatever it is.  This is the time for you to hone a skill, because while chronic pain may have taken away a lot of what you can do, that simultaneously left you with some time to become a borderline guru at something else.  Trust me, it’ll focus your mind something other than the pain, and it’ll help build up your self-esteem.  And maybe you’ll get a scarf out of the deal.

8.  Find a hobby you can do pretty much no matter what. You need something you can do that brings you joy and is possible when you’re in a pretty significant amount of pain, because you can’t always hone your fine turkey meatball skills.  For me at the moment, it’s blogging.  YAAAWN, right?  Well whatever works for you.  Reading, watching tear jerkers, playing cards, knitting, masturbating, talking a short walk in a park.  I don’t know you man, you’ve gotta figure that out for yourself.  But it really can’t be a  physically or mentally strenuous activity.  Save those for the good days.  You need to figure out what makes you happy on the bad days.

9. Find a lazy distraction:  Slightly different than an “easy hobby”, your lazy distraction should be something that requires almost no mental or physical exertion on your part.  Something that takes you for a ride.  Mine is movies, I freakin’ love watching movies over and over again.  My boyfriend works hard to avoid murdering me as I recite the lines to half the movies we watch.  But you know what, I love movies.  They permit me to escape my own personal nightmares.  Reading and video games can accomplish the same thing.  I used to play Mario Kart obsessively until Skyrim came out, then that took over my life.  I’m convinced those games saved me during some dark times.  Never underestimate the power of video games.  But that’s just me.  Do whatever it is you need to do to get out of your head effortlessly, because you need a break and you won’t always feel like doing your hippie meditation or cooking.  I would not recommend using most drugs (e.g., alcohol, cocaine, heroin, meth, etc) for this purpose, seeing as you’re probably on medications that will interact with them.  But I will say that there is something rhyming with…schmariuana…that can safely facilitate the absent-minded state I recommend you acquire.

10.  Don’t obsess.  I am looking at this tip and thinking to myself, EASY FOR YOU TO SAY, BUTTHOLE.  People with chronic pain think about pain all the time.  But why?  Oh, gee, I don’t know… maybe because it’s happening all the damn time and it’s not so simple to forget about it.  Simple is not in the cards for us so we have to nut or ovary up and learn not to obsess about the pain.  It isn’t that you have no reason to obsess, it’s that if you do, you will find it formidable to maintain any semblance of a life.  Don’t you need and deserve to have something beyond the pain?  You have to fight this urge to obsess.  Fight with the hobbies I mentioned, the lazy distractions.  Talk to people about the weather.  Do anything you can.  Just don’t permit yourself to let the obsession feed on itself or you’ll find yourself in a pit of self-pity that–again, while completely understandable–is not useful to you.

11.  Don’t catastrophize.  What an annoying word, catastrophize.  You can thank my therapist for number 11.  Catastrophizing is when you expect the worst possible scenario to happen.  A good example would be if you are going to get Botox injections for chronic migraines and you already imagine that a) they won’t work and b) they’ll render you an expressionless monster for 3 months.  Um.  Not that I’m speaking from experience or anything (insert wink here).  Hi, I am a constant catastrophizer.  Something else my therapist said on the topic struck a chord and turned me into a crying ball of goo on his couch.  I will paraphrase: “Most people who catastrophize become that way not because they’re just naturally pessimistic, but because catastrophes and traumatizing events keep happening to them for no reason at all.  Some people just have bad luck and have an unusual amount of bad things happen to them.”  Well shit, that sucks.  But it sure is nice to hear an authority figure of sorts admit that some people randomly have too many bad things happen to them.  However, if you are a practitioner of logic, you know that there are no such things are curses.  There isn’t an evil force out to get you, either.  It’s the luck of the draw and that’s all, which means that at any moment your luck can change.  But even if it doesn’t, will it make you feel better to assume everything is going to turn out badly?  At this point, I should admit that I often excuse away my catastrophizing by saying that it permits me to emotionally prepare for the worst.  As if bad things happening to me without my having thought about them will cause me to explode into a thousand pieces.  I sometimes worry a little bit too much about my potential emotional reaction to things.  However, I can now at least in this moment admit (and probably totally deny later in a crying fit when I’m having a bad day) that nobody can truly prepare for traumas.  You can even hurt yourself in the process of preparation, imagining how you’ll feel if x, y, or z happen.

12.  Really experience the good stuff.  What I mean is, when something good happens, purposefully think about it so that you don’t take it for granted.  Example: I’ll take a bite of a Cadbury Creme Egg.  I really love those little fuckers, you guys.  I’m sure it’s full of nothing but refined sugar and carcinogens but I can’t help myself.  When I take a big bite, I can either gobble it up and move on, or I can close my eyes and really think about what I’m tasting.  The difference is, in the second scenario I force myself to think about the delight I’m feeling.  I find myself doing this more and more, and it can get embarrassing.  See, I’m a bit of a smell-o-phile and so I’ve begun smelling those flowers they sell outside of bodegas.  Most New Yorkers look at me like I’m a psychopath for closing my eyes, shoving my face into a bouquet of roses, and smiling.  OH WELL, that’s their problem because I need to extract as much enjoyment as I can from things like that.  You and I can’t afford to ignore those opportunities.  So when you slip your feet into your snuggly socks, when you taste a perfect summer peach, when you have a swig of water on a blisteringly hot day, when your lover gives you a back rub after a long day, you be a person who really feels the experiences.  Take it where you can get it, friend.  You can’t afford to be blind to these smaller comforts in life or self-conscious about smelling the flowers at the bodegas.  This way of living will bring you little sprinklings of happiness that you need in between the bad times.

Well that’s it, that’s what I got.  I sometimes follow my own advice, and too often I forget.  All I know is that when I remember to implement some of these tools in my life, it’s easier to deal with the pain.  I wish you luck and Cadbury Creme Eggs aplenty.  Also the caramel ones, those are good, too.