Chronic Illness and Guilt

I spend a lot of time feeling guilty about the consequences of my various illnesses. My boyfriend and I quarrel a lot lately–there’s tension because I need a lot of help and I’m bitter about it, I’m very moody because of the pain and not easy to be around. I feel like a financial burden to my family. I miss a lot of work, sporadically. It’s difficult to plan events with friends and family when I’m having flares, and I never know if a migraine will arise. My boyfriend and I can’t travel much together because of my limitations, nor can we engage in activities that might be tremendous fun if not for my body… like rock climbing. People around me see me suffering and I can see it hurts them. This might be the worst causes of guilt and I don’t think there’s anything that can be done about it. But if you’re loved–and we should all be so lucky–there’s no way around this.

None of this is my “fault” exactly, but it is. It is my fault, I’m the one causing all of it somehow. Right? This is the guilt I believe every person who’s chronically ill is tormented by to some extent. If you have good support from people around you, I think it is survivable guilt. I’m lucky; my boyfriend often tells me he’s happy to help me and understands none of this is my fault, and I can tell he actually means it. My parents always offer “any help” they “possibly can” and never blame me. But I still feel guilty. What do I do with all of the guilt?

Step 1: Acknowledge it: I feel guilty. I feel really, really guilty because I’m sick and it has all these consequences, and I don’t like them. I feel like a monster!

Step 2: Feel it: UUUUGHHHHHHHHHHHHHHHHHh

Step 3: Distraction/comforts when necessary: Netflix binging, going out to the movies, pizza, work, games, teasing the cats with their favorite rainbow wand

Step 4: Rationalization: Okay, I’m sick. None of this is actually on me. I didn’t purposefully make myself sick, or do anything to get sick. And I’m only seeing ONE MILLION doctors and taking meds, I lost weight because my doctor told me to, I’m seeing a therapist to work on stress management, blah blah blah. I’m trying to be my own best friend here (ew). I’m not perfect but damn it, I’m doing a pretty good job. I’m even still working, which isn’t easy. So I might feel guilty but I don’t deserve to feel guilty.

Step 5: Continue to feel guilty: Wait, what? DAMN it. I’ll try again tomorrow.

The emotional ton of bricks of diagnosis and denial

When I was diagnosed with rheumatoid arthritis, it was really scary. I had a lot of sad/destructive thoughts…

  1. My joints are going to become deformed and I’ll look scary to children. They will think I’m an evil demon witch. That’s 100% definitely going to happen.
  2. I’ll need to get my joints surgically replaced. All of them. 5 times over. Definitely.
  3. My lifespan is decreased 5-10 years.
  4. I have to take chemo medication for the rest of my life. I bet that’s not going to feel very good. The cancer patients don’t seem to enjoy it. I’m going to lose my hair, right?
  5. I’m too fat for my crappy joints.
  6. I’m going on disability, there’s no way I’ll be able to work.
  7. I’ll be stuck on my couch forever, like a hermit, even worse than usual.
  8. I’ll be extra bad at sex now.
  9. My parents are gonna frrrrrrreak the fuck out.

I also had some really happy thoughts…

  1. FINALLY, a diagnosis! Jesus christ, I did it!!! I found it! It took long enough. I know what’s wrong with me! Hooraaaaaay!!!! 😀 😀 😀
  2. I can focus on getting better instead of focus on finding out what’s wrong!
  3. Now people will believe me! 🙂
  4. Now I’ll be able to take medications that treat the illness instead of just the symptoms.
  5. It’ll be easier to get pain medication when necessary now that I have rheumatoid arthritis. Fuck you, doctors who never believed me (middle finger + sneer).
  6. I wonder if I’ll ever be able to get a prescription for weed… (the answer is yes, in some states, I totes could… not in NY State yet but it’ll happen)
  7. My parents are gonna be so happy!!! (when I get medicated and feel better)
  8. I bet I might be able to actually plan stuff again if the medications work (THIS TURNED OUT TO BE TRUE)
  9. Pickles!!! (I wanted to have the same number of happy thoughts as sad thoughts, and I really like pickles)

Obviously, some of my thoughts were real concerns, real joys. Others were ridiculous and stupid. It’s so incredibly complicated when you get that diagnosis after years and years of being sick. I’m still digesting it and it’s been months. My biggest problem now is I periodically insist I don’t have rheumatoid arthritis, and I believe I’m somehow “faking it”. My boyfriend finds this deeply disturbing, as he witnessed me in agony on the couch for extended periods of time, and remembers me having such a difficult/painful time getting into work I’d arrive covered in sweat (he was recounting this to me recently when I asked him to remind me what pre-methotrexate days were like). That is, when I made it into the office at all…

My RA presents with less swelling and stiffness now because I caught it early and treat it very aggressively. In other words, I’m young and taking my drugs so I’m not doing as poorly as some 70-year-old woman who went untreated for 20 years. You’d think this would lead me to understand why my joints aren’t very swollen, but instead, I keep thinking, “Oh, I must not have RA!” That’s a real thought I have fairly often. Regardless of how much pain is in my joints. Or if they are stiff or anything… I am genuinely incapable of squatting all the way and then getting up–and I know that’s a thing most people can readily do all day long if they want to–yet I am typing to you trying very hard to acknowledge that I have the disease I know I have, a disease I’ve been diagnosed with, I’m being treated for, AND the medication is working really well, remember…

Why am I so fucked up, one might ask? Years of doctors not believing that I was in pain when I told them I had headaches and neck pain, that’s why! I was told so many times nothing was wrong with me I started to believe it. Eventually, doctors started figuring out that things were wrong (unrelated to RA, a number of disc herniations in my cervical spine causing me a lot of neck pain, for example, which would have been discovered immediately and I could have done PT for it if anyone bothered to do an MRI… assholes…) but by the time I was getting diagnosed for the pile of health problems I’d been accumulating I’d already developed some fun new assumptions that I am still trying to shake from my subconscious (and semi-conscious) mind.

  1. Don’t trust doctors.
  2. Doctors don’t trust me.
  3. Don’t trust myself/it’s all in my head.

I guess I thought when I was diagnosed everything would be simpler. WRONG. 😛 Things are a lot better but they aren’t simpler. I still have to work through aaaaall my emotional shit. Being initially listened to and subsequently believed by a rheumatologist and getting a diagnosis didn’t suddenly make me trust all doctors… and it didn’t make me think all doctors would believe me if I went to them and told them I had some symptoms. And it certainly didn’t cure me of the “it’s all in my head” problem I’ve developed. I inject myself with methotrexate every week and I’m still saying, “you’re making it up, it isn’t real….” (blank stare) Normal, right?

I am deeeeeeply disturbed! I’ll keep working on it. 🙂

Do people change?

First I have to apologize for never following up on my “thrilling” colonoscopic experience.  I can now tell you I do not have cancer or ulcerative colitis, or any kind of lingering severe infectious agent.  They did find diverticulosis, which I’ll enjoy adding to my list of concerns, and I continue to have IBSish symptoms.  IBS being the stupidest diagnosis ever.  Doctors are so desperate to put something into a neat little box they have to essentially make up a condition.  Not that people with diagnosed IBS aren’t suffering–quite the contrary.  Rather, it’s a non-diagnosis.  It’s like saying, “I have no idea what’s wrong with you so I’ll lump you in with all the other people who don’t have diagnoses and we’ll call THAT a diagnosis.”  What a pathetic state of affairs.

I have been altering my diet somewhat to make things easier on my intestines and it’s helped me a little bit… we’ll see how things will progress over time.  All of this from ONE incident of infectious colitis.  Life sure does throw curve balls often, doesn’t it?  For those of you keeping up, here’s a really fine drawing of myself at my current state:

 

me 3But my wonky digestive system isn’t what I wanted to talk about.  I have been thinking primarily about the very life essence of people lately.  What is a personality?  Is it malleable?  Do people really change?  And in what percentages do people change?  Is it that most people don’t change, but a few get “better” and many more get “worse”?  Those terms are pretty subjective, but I bet we could all agree that there are certain “goodnesses” we can all agree on (kindness, love, truth, generosity) and uh… “badnesses” (haha, okay, sorry about how awful these words are) that don’t sound so great to anyone (cruelty, prejudice, greed, hate, violence).  I grapple with these questions because I feel myself changing as I have watched my friends and family change or stay the same as the case may be.  Being pleasantly surprised by the change or stasis is a rarity… usually I find myself disappointed in who people truly turn out to be.

If you are dealing with one or several chronic illnesses, you probably found yourself changing like I’m finding myself changing.  I have some theories as to why… first of all, people learn and grow in life through experience, especially stressful experience.  If you have more than the average share on your plate, or if it’s coming to you all at once, I think it speeds up the natural growth process.  To use an analogy: the human body is exposed to viruses and bacteria from time to time and the immune system (if functioning properly) learns how to defeat them.  Under normal circumstances a person’s immune system doesn’t have to deal with too much at one time, and thus, it strengthens slowly over time.  But what if someone fell into some kind of bacterial virus nightmare vat and their body had to deal with tons of shit at once, assuming they survived that, the body will have picked up a lot of skills in a short period of time.  And the body will have been forever changed.  This analogy is a bit silly and not entirely accurate, but I think my point is made.  QUICK change.  Time-defying change.  Conclusion: chronic illness (or any other serious hardship) alters the natural timeline for personal emotional growth.

Whether or not the changes happening in me are good I cannot say.  I feel somewhat scattered because I’m unfamiliar with myself.  But I enjoy the person I’m becoming.  I seem to be more sure of my self worth.  I care more about other people, particularly strangers, in that I see myself in other people and imagine how they might be hurting.  Perhaps suffering adds empathy, although I don’t kid myself… I know much of this is imagined empathy.  Real or imagined, I consider it a good thing.  I notice more happy moments as they are happening than I used to.  You know how it goes.  You’re sitting around, thinking back on some event from 5 years ago and how great it was, and wishing you’d enjoyed it while it was happening.  Well I think I’m enjoying those things in real time.  Some of the negative changes I’ve noticed in myself are that the stagnancy of others where it exists almost revolts me.  I know I shouldn’t judge people, but I do.  I wonder how they can bare to be so cowardly.  They see things in themselves that they dislike and do nothing.  They revolt against the change because it hurts to change.  At least that’s what I believe.  This is not to judge those who can’t or shouldn’t change things about themselves for many reasons I won’t get into.  But let’s face it.  Almost none of us couldn’t do with a little work on our personality.  We’re just too lazy to put forth the effort.  I got “lucky”–life forced me to change.  All I had to do is say to myself, okay, I’m going to embrace this and see where it leads.  It’s terrifying, no doubt, but I believe finding out new things about one’s self is not bad.  Self-reflection is not just about knowing yourself.  It’s about understanding other people, too.  I believe that because I believe we have more in common with each other than we’d like to think.

Conclusions… hm… can people change?  Yes we can fucking change.  People are full of shit when they say, “people don’t change.”  Or “people never change.”  A more realistic statement might be, “people can change, but it is painful and difficult.”  Or, “people can change but they have to want to change.”  Which is why you can’t make your partner stop throwing their dirty socks on the living room chair no matter WHAT you say.  You know, until they realize it’s gross.

If you want to be different, don’t give up.  Keep trying.

“Then the LORD answered Job out of the whirlwind…” (Chapter 38, Book of Job, King James Version)

Friends, I am displeased to inform you that the gastrointestinal issues I mentioned in my previous post have returned in a slightly varied form.  I consulted with a gastroenterologist who believes I may have ulcerative colitis (UC).  To the two or three people who read my posts, you will know that I already “enjoy” a few separate chronic health issues already and, moreover, my most recent joy in life is cooking.  If I do have UC I will likely have to restrict my diet even further than I have been and it will be potentially physically and certainly emotionally devastating.

When I was but a young thing in college I took a class on the Book of Job. This came not long after dealing with a few personal tragedies in my life (one of which was the death of my Aunt Ellen; I was very close with her).  How obvious, looking back, that I was grappling with why good things happen to people for no apparent reason and mysteriously decided to take a class in the religion department (while a music major) that would focus solely on the story of a good man targeted by God not for being a bad man, but simply to test his endurance.

If I am diagnosed with UC, will I have ANY moments of relief between that, chronic migraines, constant upper neck and upper back pain, and occipital neuralgia?  Job was a fictitious person as far as I’m concerned, plus, he eventually buckled and cursed God in the end.  Otherwise, God wouldn’t have appeared “out of the whirlwind” to give Job a good long tongue lashing for being such a whiner (c’mon, God, you had Job sitting on a pile of poo, covered in boils, all his wealth taken, all his beloved family killed, his livestock destroyed… God wasn’t a very forgiving God in the Old Testament, was He?).  Still I think of Job.  Do I think it would take someone so long to curse God in the real world as it took Job?  No.  But I do think it’s telling that anyone could have conceived of such a person, even in a story.  There was someone somewhere who believed a human being could endure inconceivable tortures.  Endure with a continuing love for the thing most important to that person, in this case, God.

I will endeavor to endure for my own reasons and continue to love the things and people I have loved.  At this point I can only endeavor.  But the desire to endure is a beginning.

Tomorrow I will do a Nuprep cleanse (it clears out your bowels… yaaaaaay…) and on Monday I get a colonoscopy, when I will find out whether or not I am looking forward to UC.  I am hoping to have some tips to surviving the Nuprep, which I will probably not be able to do until late Monday or Tuesday once I have news.

Cooking with a Disability. I: Reasons for Cooking

I live in the East Village, so it’s like, BAAAAAAH I can eat anything I want by going to Delivery.com or Seamless.com or Grubhub.com and just find it.  So I did.  And surprise of surprises, given my low salary and the high cost of food around here combined with my never-ending medical bills, I became totally broke.  And gained a lot of weight.  And my blood pressure went up.  Simultaneously, I became aware that MSG in moderate to large quantities was a major migraine trigger.  It was a logical conclusion that I should begin cooking my own meals.  When I lived alone I used to cook for myself, but that usually entailed making pasta and then putting butter and grated Pecorino Romano cheese all over it.  Yes that is really delicious but it isn’t exactly healthy (but good for a treat…).  I thought, okay FINE fine fine I’ll start cooking.  And it turned out to be one of the more pleasure-giving experiences of my time as of late.  Also I lost a few pounds.  Here is a picture of some homemade chicken penne soup (with homemade broth straight from heaven, I swear):

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If you are disabled in any way, it is likely that cooking and/or baking will be a godsend to you.  Here are some (hopefully) convincing reasons why:

  1. It gets you physically moving and the blood circulating.  If you are immobile a lot of time, you know just how important moving around for a few minutes can be.  You’ll avoid blood clots and fight off muscle atrophy.
  2. It forces you to do something, thereby increasing your self-esteem and decreasing your feeling of being a useless slug.
  3. It affords you an opportunity to express yourself artistically (e.g., “I added an extra tablespoon of tarragon to the recipe and it’s delicious!  I’m a GENIUS!”).
  4. You will show up your able-bodied or -minded friends who are too lazy to cook or bake.
  5. It will almost always be more healthy because you have more portion control and a say over exactly what goes into your food.  This can’t be understated.  If you have an emotional issue, there are a number of reputable studies suggesting that a healthy diet (full of fruits, vegetables, lean proteins, grains, and few preservatives) help maintain your blood sugar levels, thus decreasing mood swings.  It will also help your body physically in that better foods in your body give it better nutrients, which will make your body work like the finely tuned machine you want it to be.  Everything from your digestion, cholesterol, immune system, and cardiovascular health can be dramatically altered by what you eat.  So essentially eating well and knowing exactly what you’re eating gives you a better shot at being the healthiest you can be with whatever physical condition you have.
  6. Over time, even if you cook with a lot of healthy produce like fruits and veggies, it will be less expensive than takeout unless you only eat fast food (which you really shouldn’t do often for health reasons anyway–you know I’m right), which means you’ll save money for those endless doctors’ bills… ugh.
  7. If you live with people, they will love you forever for it.
  8. If you don’t live with people, you can freeze leftovers and have easy meals to warm up in the future.
  9. You will taste more of what you eat and feel more connected to your meals, which adds joy to life.  I’m depressed often.  Squeezing out a little bit of happiness when I can is very important, and if cooking has this same impact on others as it has on me, please do it!
  10. Need to lose weight?  No problem.  Need to gain weight?  No problem.  Need to have a low-sodium diet or a gluten-free diet?  No problem.  Yaaay you get to control what you eat and I can tell you now from experience that it isn’t actually difficult to make low-fat food and low-sodium food taste amazing if you have the right spices, and I really mean that.  You can learn how to finagle your food to taste like normal food when, in fact, it’s gluten-free hippie low-fat low-salt food (or whatever you need).  And there are a number of ways to gain weight without eating unhealthy fats too often.  Nuts, avocados, and many fishes have good fat.  You can also buy oil to cook with that contains mostly or all good fats (my favorite is safflower oil, which is pretty much tasteless and can be used with nearly anything, or sesame oil for Chinese meals).  That’s something well worth looking into and there are many wonderful websites that list healthy oils and unhealthy oils.  This way if you’re trying to lose or maintain weight, you consume mostly good fat, and if you are trying to gain weight, you can do so with healthy fats that won’t clog your arteries.
  11. If you mess up, who cares… seriously, who cares?  It’s a learning process.  But if you make something amazing, totally take all the credit and force feed all around you so you can bask in the glory of your accomplishment.
  12. You don’t always have to “cook” to prepare a meal for yourself.  Once a week I have what I call a smorgasbord night where I just chop up some fresh organic fruits, vegetables, some yummy cheeses, some local bread, homemade salad dressing (not hard, I swear, I’ll post the recipe sometime) and some honey or preserves.  It’s easy and it’ll make you feel fancy.  See below for a plate of one of my last smorgasbord nights (pic of the bread not included).  This is a very filling and satisfying meal and you can throw in whatever you want, including any kind of pre-made salad or pickles or whatever.  Hey it’s your smorgasbord.  You do what you want!

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I hope this will convince some of you to embark in the glory of cooking for yourself, become empowered, and take control over something in a healthy way.

P.S.  Don’t worry, I still order from Delivery.com sometimes.  I have to have Iggy’s Pizza on occasion or I might die.

The Life of Ipecac

“People that talk in metaphors oughta shampoo my crotch.” –Melvin (Jack Nicholson) in As Good as It Gets

My name is Ipecac.

I do not have many friends.

People don’t seem to like me as they like the facial moisturizer or the tylenol or the vitamins. Called upon in the worst of circumstances and remind others of illness and pain.

But I know I am necessary.

Without me, people can’t survive.  I am a reminder of the precarious balance between life and death, happiness and sadness.  Poison and elixir of life.

Maybe it’s not so much that I stop death that helps other to live–maybe it’s the reminder of the preciousness of health.

We all have a purpose.

One’s purpose is to moisturize, another is to freshen breath.  These are trivialities.  Nobody is so important as those motivating us, being the comparison by which people measure themselves to feel better about our own lives.

I used to envy the toothpaste.

Better that I should lie precariously in the back of the cabinet under the bathroom sink, rarely seeing the light of day, dust and spider carcasses my only companions, the loneliness only ceased during times of emergency or my own expiration.

I am Ipecac.

I am alone.

I am vital.

On Medications (good advice for everyone)

I recently read a story about someone with occipital neuralgia (a chronic pain condition that has to do with an irritation of or damage to the greater or lesser occipital nerve) whose previous neurologist prescribed them Cymbalta, which is a seratonin-norepinephrine reuptake inhibitor (SNRI).  This person took the medication for two years before seeing another doctor who informed them that Cymbalta generally treats depression.  She then proceeded to go off the medication without researching the withdrawal problems.  I did some research and found that Cymbalta has been approved very recently by the FDA for treatment of musculoskeletal pain so I suppose the neurologist may have been at the bottom of the barrel, trying anything.  It’s possible.  Nonetheless, it seems like a slightly irresponsible medication to prescribe to someone without depression problems or arthritis.  I have to say, however, that I wasn’t surprised–doctors prescribe medications inappropriately all the time.  The shock on my end came from the ON sufferer’s fury at the doctor–she never bothered to look up what this medication was for.  Two years of shoving pills into her face, and she had no idea what she was taking.

There may have been a time long ago when doctors were to be uncompromisingly trusted but we no longer live in that world.  We live in a world where there are a few exceptional doctors whose strength allows them to navigate through the nightmare of health insurance dodging payments (which hurts them just as it hurts us…well not just as it hurts is, but it isn’t a great situation for them), and watching people suffer while trying to do their job, working exceptionally long hours in many cases, while still maintaining a sense of determination and sympathy for their patients.  Others are worn down by the present system, which punishes the weak.  Still others never cared to begin with and are only doctors because mommy and daddy told them to do it because they’d make lots of money.

A precious few of us manage to find the good doctors.  I have found a couple after years and years of searching.  Regardless, any time one of them thinks I should try a new medication or go off a previous one I ask a lot of questions.  I don’t give a shit if they’re rushed or irritated by my questions.  This is MY FUCKING BODY.  I’m not going to just eat pills because a doctor tells me so, I’m going to take them if and when I feel satisfied that it is a good idea.  This is in no way insinuating that I think I know better than any doctor about pharmaceuticals–I don’t.  However, I am an intelligent, proactive person and know I am capable of understanding what words like “contraindication” and “side effects” mean.  Frankly I don’t know anyone with a chronic illness or pain condition who isn’t intimately familiar with the various pharmaceutical terminology well enough to posit informed questions regarding medications they’re taking.

I think you’ve figured out where I’m going with this.  Be informed about what’s going into your body, whether that be another person’s phallus, food that you’d prefer not be covered in pesticides, or potentially life-altering medications.  Nobody–including your doctor–cares more about your body’s well-being than you do. Be. Your. Own. Advocate.

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.