A Night out through My Eyes

My life took a drastic turn when I got sick.  My body went from a brilliant tool I used to navigate the world to a prison.  This has completely altered how I view and respond to people around me, and of course, how they respond to me. So, let’s go to a party together and you can hear the voices in my head.

My Body, My Prison.

My Body, My Prison.

All day I have been psyching myself up for tonight.  Yeah, it is just a small get together with a few friends and acquaintances, but these days any sort of social interaction is so much more than some fun.  I’m prepared, I was particularly careful with my meds so I could drive in total safety.  Not to mention avoiding the side effects of said meds such as falling asleep in awkward places, and non-stop blonde moments.  In doing so, my pain is a little higher, but it’s a necessity if I hope to survive the night.

I walk through the door and take in the scene, a little music in the background, lots of food everywhere, and people are separated into small groups, chatting away.  A friend gives me a hug and inevitably follows it with “how are you?”  First off, this question just kills me.  I am fully aware that in our culture this is a greeting more than a question, but for me, it’s not even something I want to think about.  Plus, I don’t have a socially acceptable answer.  At least, as far as I’m concerned, I don’t.  Instead, I feel cornered into pretty much lying with an “I’m ok,” or “I’m good.”  That way we can all move on with our night and avoid starting out on an unpleasant note.  I don’t expect our culture to suddenly find a new greeting because the current one makes me grumpy.  That is wishful thinking.  I suspect I just need to make my peace with it.

'Nuff Said

‘Nuff Said

Now that I’ve dodged that age old question I find myself sitting next to someone who actually knows about my health, or lack thereof.  I imagine it is natural to be curious, and I’m sure that many of my friends are genuinely concerned.  So, they ask me about my latest adventures in the medical world.  I’ll answer questions in facts and research, but I’m the last guy to get into an “I’m worse off than you” debate with anyone.  Why, because I want to be the guy winning the health award in the room, not the other way around.  When it comes to my personal experience of illness I will avoid it or underplay it, especially in groups.  I’ve tried the honesty and even after I drop the mood of the group ten notches what I encounter most often is a lack of comprehension.  After that, even worse, I get advice.

Adventures in medicine. Just as dangerous, not nearly as fun.

Adventures in medicine. Just as dangerous, not nearly as fun.

Now I’m not saying that more information isn’t a good thing, but everyone assumes that I haven’t tried, well, anything.  They offer the alternatives to medication, like meditation, relaxation, supplements, or my personal favorite; less stress.  Sure, never thought of that, I’ll get right on it.  Some suggest “new meds” that I tried about five years ago and they did nothing.  Others suggest exercises or machines that have worked wonders for them, so I should definitely do them.  They don’t understand that my body is so very different from theirs that their correlation doesn’t apply.  I’m not being a jerk here either, chronic pain and illness actually physically alters both your body and your brain (a whole other post in itself). It seems that on some level everyone has a suggestion, but the problem is they aren’t living in my body.  They haven’t been along for the seven years of trying everything, and I mean everything from the latest in medical break throughs to the hippie dippiest methods available, no luck.  I’m aware that their intentions are good, but I find in giving advice people make a lot of assumptions and some of those assumptions can be hurtful or offensive.

 Absolutely True, Well Meant, but a Little Insulting.

Absolutely True, Well Meant, but a Little Insulting.

If it isn’t advice, a lot of times the alternative is platitudes.  I don’t think anyone wants to hear them in any situation.  They are the words we speak to fill the silence, when really, we just don’t know what else to say.  They don’t do any good, in fact, they do damage.  No one wants their troubles dismissed and saying things like, “It will get better,” or “life is like that,” is doing just that.  Believe me, silence is superior.

I adore my friends and family and I understand their concern, but when I make the monumental effort to go out and have a social life the goal is to get away from that side of my life.  I want a few hours of normalcy.  Even though I still have to manage my pain, balance my meds, my exhaustion, my mood, and my level of brain power.  I really like to pretend otherwise.  One of the things that keeps me going are those small moments when I actually forget my body.

Laughter is the Best Medicine.

Laughter is the Best Medicine.

I recognize that unless you have experienced chronic pain you won’t truly understand the experience.  Yes, everyone has experienced pain, but chronic pain is a totally different beast.  It has mental and physical repercussions that even someone living them has a hard time wrapping their head around.  It doesn’t make sense unless you’re a neuroscientist who specializes in pain.  Yes, they do exist.  They are the ones who made sense of all the craziness caused by chronic pain.

Yup, that's the guy.

Yup, that’s the guy.

While you may not be able to understand, what you can do is sympathize.  You can be kind and forgiving of my physical limitations and my moods.  You can help by offering the simple things.  I struggle with the basics, keeping the house clean, taking care of myself, and especially feeding myself.  I can’t count how many times I have opted to skip eating because making something or even getting to the kitchen was just too much.  Cook me some food, help me run an errand, help me keep track of my doctors appointments, help pick up the house.  They seem like small things, but to me they are monumental tasks that weigh on me because I know they must be done, but I can’t manage to do so.

The smallest things have the greatest impact.

The smallest things have the greatest impact.

In the mean time, distraction is a great technique.  If I’m being social, I’m always excited to hear about life outside of my own.  I’m also happy just to enjoy the company.  You don’t need to help me, or fix me, just be a part of the few hours that I can put everything else away.  Some company, some laughter, a connection, this is why I fight so hard and just the slightest taste is enough to keep me going.  No effort required, just be you.

Moments like these are my air.

Moments like these are my air.

What is your life like with chronic pain?  What advice would you give your friends?

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in Chronic Illness, Chronic Pain, health, Mystery Illness, pain management and tagged , , , , , , , . Bookmark the permalink.

15 Responses to A Night out through My Eyes

  1. shodoshan says:

    This is one of your best posts yet!

    First of all, you’re REALLY good at finding pictures to illustrate your points. I love them!

    Second, I love that you give voice to some of the things everyone is afraid to share – don’t ask me how I am doing because I don’t want to lie. Don’t make me give you the lowdown because ten other people are going to do the same thing and I’m here to escape, not dwell. And don’t think you can advise me unless you have actually seen all the things I’ve tried!

    I think you leave two points out – the first is that one of the things chronic pain does is that you lose your identity. You become “the sick person” or “the fragile person” or “the one who can’t do that” because it just consumes you both in your mind and in the minds of those you’re socializing with.

    And the other point is that after all that psyching up to get out there, and the struggle to keep on the brave face in public, afterwards you pay a heavy price for DAYS. The pain is worse, you’re exhausted, and you’re not sure you’ll ever recover. It really makes you evaluate whether having coffee with that casual acquaintance is going to be worth being bedridden for two days.

    Thank you for sharing. What you’re saying here is really, really important.

  2. Nan Sam says:

    Thank you for giving such an eloquent voice to all who are trying to cope with long standing chronic pain!! My 39 year old nephew was sharing in some very good “son time” when a freak motorcycle accident resulted in his flying over the handlebars resulting in a spine injury. He has was totally innocent of any carelessness or wrongdoing! He has been paralyzed from the chest down for 7 years and copes with helplessness as welll as chronic pain! He had a good marriage, two children and a good job! Only the two children stll remain! Your insights will helped me to better understand, better enter into and how best to relate to what he struggles with every day. Thank you again!!

    • leitis23 says:

      Thanks. I actually thought I was being kind of a jerk. So I’m very surprised at the reaction I’ve gotten. This is great feedback, it will help me write more posts with this level of honesty and maybe even more. As long as you reel me in if I turn preachy. You are right about the two things I missed. Ironically I ran out of spoons while writing and my brain turned to mush. Thank you for reminding me though. I think the identity issue can be it’s own blog entry. I do wish I had included the end cost of it all. I will find a way to explain that somewhere along the way. I really appreciate the feedback and the encouragement. The more input I get the better I will know what resonates with others. Thanks for reading and feel free to share.

    • leitis23 says:

      Thank you for reading and the great feedback. It is very touching for me to know that I have supplied some useful insights into a complicated and pretty hidden world that might help both you and your nephew. I’m so sorry to hear about his injury. I can relate to his losses and hope that he has a small handful of friends and family that afford him compassion but not pity. If you have any questions about the chronic pain experience please feel free to ask. I will do my absolute best to offer some insight. Also if you think it would help at all send your nephew my way. Talking with someone who understands is amazing. If you know anyone this would help please pass it on. Thank you so much for reading and especially commenting, I value your insights.

  3. Absolutely. I just wrote a post about the supreme unhelpfulness of the ever present advice, “But have you tried Echinacea?” (Good Lord, I’m so tired of hearing that. Like I wouldn’t just buy a bottle of that from Walmart instead of….everything else we have to do to stay healthy.)

    • leitis23 says:

      I just read your post and now I’m following your blog. We both speak the truth, and really, some people will listen and others won’t. Still the advice is a killer. It can be so demoralizing.

  4. Jimmy says:

    My life over the last 20 years with chronic pain has been horrible. I had a lifting accident at my job in 1995 at the age of 22. (My boss thought it was a good idea to lift a 225 lb. pallet jack with the two of us lifting the heavy end and my other boss carrying the forks end. Well, boss-man with the brilliant idea dropped his side and I ended up with a torn left rotator cuff and a ruptured thoracic disc in my spine (along with a lot of nerve damage) That was the end of ‘normal’ and the beginning of a life of misery.

    I’m naturally an introvert but before my injury I still hand a circle of good friends that I lived life with. Not so anymore. It’s not that people don’t reach out to me, I just don’t have the energy (or the money, I’m impoverished due to my chronic pain) to ‘hang out’, go to concerts, etc. and it’s tiring trying to explain to people that I just can’t do the things I used to do. They never really seem to understand no matter how much I explain it so I eventually just gave up.

    I moved in with my grandparents (humiliating to say the least) back in early 2011 when my guitar teaching business took a serious nose-dive due to the economic downturn. I’ve spent the last four years taking care of them which is exhausting and has caused me more chronic pain (I messed up my hernia mesh plug by picking up my overweight grandfather off the floor after he fell. I need to have this repaired but I don’t have insurance and I’ve acquired much debt via other medical bills.) I would take a job doing something else but sitting at a desk or being on my feet for hours at a time are just not an option anymore.

    The only time I go out now is the one day a week I teach guitar (4 students), taking my grandmother grocery shopping or to the beauty shop, or on the rare occassion that I play a gig (I’ve turned down many live and studio gigs over the past few years because of my mounting health problems.) Other than that I stay at home, taking care of the old folks. Most of my family look at me like I’m a irresponsible joke or just a lazy loser who enjoys sapping off of his grandparents. It wasn’t always like this. Even after my accident, I worked my ass off to teach 35 students per week, and I took EVERY gig and session that came my way. Teaching guitar was a fulfilling way to make a living and accomodate my chronic pain issue. I was able to schedule lessons in blocks that my body could handle and it worked for about 13 years. Although there were lessons where I would get hit by a pain storm and have to go lay down on the hallway floor and attempt to knock my spine into place. Sometimes it worked, other times the pain would slay me for hours and having me literally praying for death.

    I’ve dated women dozens of women since my initial back injury but nothing ever lasts. Usually they run the other way when they find out I have so many health problems. I guess I can’t blame them but it is frustrating. I think I knew about 6 months into my chronic pain that getting married and having children were no longer an option. I couldn’t imagine trying to support a family in this condition so in that regard I guess I was lucky that it happened while I was still single.

    Since 2007 I’ve added a torn sacroilliac joint (July 2010 – car accident due to chronic insomia) which has totally screwed up my whole lower back and led to lots of numbness in my buttocks and legs, torn rotator cuffs (June 2013) in both shoulders (from no power steering in my piece of shit car – actually the left shoulder was initially injured along with my back at my work accident), slipped rib syndrome (September 2012) (never let a chiropractor do rolfing around your ribs after he just had an argument with his wife the previous night!), another hernia (September 2012) from lifting a heavy PA speaker onto the stand. Also, I think my neck is permanently messed up from a different chiropractor basically beating the shit out of me (July 2007). Torn ligaments in my fretting hand (Feb. 2014) from doing excessively long recording sessions because…well, I’m desperate and thought if I could get my recordings finished I could sell them online and at least earn a bit of money to try to pay some outstanding bills. Now I’m uncertain if I can even continue playing music. That’s a frightening thing to contemplate when it’s the only thing I really know how to do. I also think my body is beginning to show signs of arthritis as my knees, hips and jaw have begun to make loud popping sounds over the last few months. I wish I were making all this up. It’s almost unbelievable as I read what I’ve written!

    Life with with chronic pain has been a miserable nightmare. Yes, I’ve become more empathetic and compassionate because of what I’ve gone through in the last 20 years. Honestly though, I think I would have preferred to be one of those ignorant people in my life that just don’t have a clue about chronic pain.

    What’s next for me? I don’t know anymore. If I weren’t living with my grandparents I’d be homeless and living in my lesson studio. Mainly, just living day to day anymore. Long-term, I’m in the process of composing a symphonic piece that combines elements of Celtic and rock music. Unfortunately my Mac crashed about a year ago and I haven’t had the money to get it repaired so I’m just writing out parts as I hear them in my head (the way of the old-school composer!). That really seems to be the only thing that motivates me to continue on, is hearing that piece of music performed with an orchestra (along with screaming guitars!)

    This is the cold hard reality of my situation. I apologize for the long, rambling nature of this comment. I’m just incredibly sleep-deprived right now.

    Thank you Kristen for your blog. You write about some very difficult topics that few people are gutsy enough to deal with. Thanks for allowing us to share our experiences.

    • leitis23 says:

      Did you know that there is a way that the government will pay caretakers, as you are taking care of your grandparents. On the other side you could qualify for disability. Not exactly ideal but options. Thanks for reading. You’ve had a rough ride. I’m sorry. That’s all I got. I’m really sorry

  5. justjill says:

    Are you still there? Your last post was October 2014 and I only found you today, in 2015. This blog and your story is the best thing on the internet since the internet. I also had a medical procedure which may or may not have been the trigger, but I have the same F^%$#! groin pain, and not a lot of hope.
    Please tell me you are still here. I relate so much! SO MUCH! Thank you for your writing Kristen. xo

    • leitis23 says:

      I’m still here, just having a hard time and wasn’t inspired to write, but today, I have something to say, so there should be a new post up shortly.

      • justjill says:

        So happy to see your new post. I know it’s not personally for me, but thank you all the same.

  6. Tina Genick says:

    I suffer from Fibro and you really just summed up exactly how I feel on a daily basis. I have tried to make an effort to explain to family members but like so many others unless you suffer from chronic pain you will never understand. Thank you for your post!

  7. joe says:

    Amazing you can express it so accurately

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