Wednesday, February 15, 2012

The toll

A mind that it anxious about future events is miserable - Seneca

At the end of my last post I asked the question: "If you had come to truly believe that you would not be physically competent to do all the things that you're currently planning for your later years, your retirement, what would change for you, right now?"

This question hits at the heart of what chronic pain does to you: it takes away hope. It makes your future uncertain, worrying even.  But this doesn't even begin to address the different ways that 7 years of chronic pain have impacted my life.

First, there are the practical things. 

For more than two years, I have been unable to sleep under the covers in our bed. I have to sleep on top of the covers with a loose, warm blanket over me. Why? Well because the pressure/restriction of a sheet and duvet on me make it hard for me to turn over or shift positions in the night. With my pelvic instability problems, I have to move a specific way in bed: every part of my body has to move along the same plane, at the same time. I can't twist or push off with one foot or things crack and pop or sometimes even seem to "dislodge". Laying under a blanket that moves with me makes things better. I've also taken to placing a pillow under my knees, to keep my pelvis slighting tilted and to relax my knees. And no, this is not sexy nor the ideal situation for your husband to reach across the bed to request an impromptu night of intimacy. You know, should either of us have the energy for such things at thee end of the day.

I find it hard to sit at a computer and work for more than a few minutes at a time without experiencing acute shoulder and neck pain. Unfortunately, my job often requires that I do exactly that - for sometimes hours of focus at a time. I have tried multiple positions and ergonomic solutions (including eliminating my office altogether and working from my bed) but with limited success. Trying to sit in an "ergonomically correct" way just tired my muscles in just a minute or two - they're just not ready to be in that position and they don't want to be "convinced". What relieves my shoulders irritates my lumbar spine. 

Walking and performing every day movements requires thought and constant awareness. I almost am never stationary or moving without constantly being aware of my posture and positioning.Folks have tried to tell me that I focus on it too much, that I've created a situation of hyper-awareness, which may be true. But my reality is that to "ignore" these things usually results in injury or at least hours or days of pain.  Just walking up stairs requires bracing my pelvic floor muscles and watching that my knees stay in alignment. With all the physical therapists I have seen over the years and the multiple diagnoses, it's like a have constant, running commentary in my brain. I'll give you a literal example of something that happens almost every day:

I'm standing at the cook top making dinner. I suddenly feel a "twinge" down my leg. Immediately I check in with myself. I realize I have transferred all my weight to one leg (a no-no) so I switch to both feet. Then I realize that my back is too arched, so I correct by tucking in my pelvis. Then I realize that this adjustment has resulted in increased shoulder pain so I lift my chest and pull my shoulders back. Which calls attention to the positioning of my head, so I try to tuck my chin in a little but not too much. All of this happens in a matter of seconds in my brain and body but this mental dialogue between brain and body is almost constant in my day. And then a moment or two later, after my mind has wandered, I realize all those adjustments have come undone and I go back through it all again. Just standing still is tiring both mentally and physically. I feel like I am constantly trying to fight what my body "naturally" wants to do.
Even clothing can be an issue. The latest craze for skinny jeans have left me writhing in agony, trying to get inside them - pushing and pulling with my pelvis is an issue. I can't wear high heels anymore and racer-back sports bras put too much pressure on my lower neck to tolerate.

My ability to do housework has incrementally diminished. Vacuuming is a killer for my pelvis, laundry kills my neck and shoulder and knees, making the bed yanks my back around in every way possible. Forget about trying to get on hands-and-knees to clean the shower so I've learned to live with gross shower mold. All of this is if I can find the energy to tackle any of it. I'm a zombie by 8pm, when my daughter goes to sleep. I usually try to tackle chores on Saturdays, which gives me Sunday to recover from whatever damage I did. My house is a disaster area. While I have never been a perfect housekeeper, I have also never been this slack either. Just looking around me most days only adds to my stress and disappointment. I don't enjoy living in a dirty, untidy house; disorder seriously messes with my mojo.

I have had to give up many activities I love: swimming, hiking, skiing and yoga being the main ones. Physical activity has always been my stress buster, my personal therapy and yoga was the ultimate form of that. I also enjoy the challenge of new things, especially when they take me to new places. I have skydived, parasailed, horse-back galloped, skiied and zip-lined around the world, climbed thousands of steps on historical monuments, hiked through rainforests, swam in beautiful oceans, and whooped with joy on some of the world's scariest roller coasters. Now I just don't know if I could put my body through that without damage. Some things (like skiing) I know I just could not do right now and have come to accept that I may never do again. Other things I'm just afraid to do in case I hurt something "for good" this time. I live in constant fear that I'll put myself in a wheelchair with some kind of mundane activity, let alone something physically taxing. Bottom line: I've lost confidence and trust in my own body to support me.

Yet, at the same time, I am unable to stay at home and just "relax", something which drives my husband crazy. Part of it is that I work from home and have cabin fever in my personal time but a lot of it is that, unless I stay busy both mentally and physically, all I can think about and feel is the pain. I need constant distraction to take my mind off of whatever hurts in any particular day. 

Financially I estimate that I have invested around $10,000 over the years in treatments and diagnoses: doctor co-pays 2-3 times a month, physical therapy co-pays (some of which were out of network and required full payment) sometimes 2-3 times a week, and frequent massages, to name just a few of the out of pocket expenses. 

The attitudes of other people don't always help either. On more than one occasion by more than one person, it has been suggested to me that:
  1. I am suffering from hypochondria
  2. I have a low pain tolerance
  3. I need to just "accept" my situation and the acceptance will allow me to "let go" of the pain
  4. I need to have a more positive attitude
  5. I need to stop talking about it because words make my world and, of course, nobody wants to be around a negative whiner. There are people out there with much worse physical ailments that me.
  6. I need to just "meditate" and take time for myself; I am too stressed out and this is causing the pain
I admit that, at some points during this journey I have indeed wondered if I really was oversensitive to pain and should just chalk all this up to getting older. You know, suck it up and all that. But what I realize now, 7 years in, is that is just bullshit. I don't just have one issue, I have multiple issues. I don't just have pain I have pain that has changed the way I live. And so let me address each of these points one-by-one. 

Allow me to vent here, k?
  1. Hypochondria does not cause pelvises to rotate, ribs to dislodge, labrums to tear, and knees to run "off track".
  2. This may be true but what's the point here? The level of pain I feel is the level of pain I feel. It's not "relative".
  3. Hahahahahahahaha. **ck off. I will NEVER accept that pain is inevitable.
  4. ARE. YOU. KIDDING. ME!? If I did not already have a positive attitude, do you think I would have been able to spend the last 7 years chasing down specialist after specialist, potential treatment after potential treatment? No, I would have crawled into a corner, downed some Vicodin and cried about how horrid my lot was in life. Anyone who tells me that 7 years of never giving up on my body is not a positive response to my situation is an idiot.
  5. Fair enough. Maybe you're tired of hearing about my aches and pains. Maybe you need to be around people whose lives are all rainbows and roses all the time. Good luck with that. You always find out who your real friends are in these situations. I'm ok with that. And yes, there are people with terminal illnesses and chronic pain issues that are absolutely debilitating. All I have to say to those folks is: I am so, so, so sorry for you. Any measure of positivity and hope that you manage to retain makes you a superhero in my book. But here's the thing: their pain, no matter how bad, does not stop me feeling mine. See #2.
  6. Which came first? The chicken or the egg? Am I in pain because I'm stressed or stressed because I'm in pain? Certainly I am in more pain during the week when I am at work, which could be a combo of time at the computer and the stresses of my job. But the reality is I don't have much latitude to change the stress level in my life in that department. What I do know is I WILL feel less stressed if I'm not worrying about my body falling apart all the time. Maybe my life will not be stress free but pain is my #1 cause of stress right now, so I'm starting there.
Despite my answer to #4, the last 7 years have worn me down and it has got harder and harder to hold out hope that I can affect my situation. I defy anyone to spend that amount of time dealing with undiagnosed chronic pain, to go through the emotional roller coaster of successive, incorrect diagnoses, and not come out the other side feeling doubtful that help will ever really arrive. 

One of the hardest parts of this to deal with is the grief: grief of the things I begin to realize I may never do like teach my daughter to ice-skate or ski, climb Machu Pichu, or even just have the simple joy of getting through a really hard workout. Coupled with that is the anger: why have all these doctors and physical therapists failed me? Why have I spent thousands of dollars on health care only to never have found someone who truly listens and wants to find out what's wrong with me? 

Then there is the fear. And this is how I started out this post. Fear of putting a foot wrong and hurting something else all the time. Fear that whatever is wrong with me is only getting worse and, at 37, this doesn't bode well for retirement. 

Here I am working my patootie off in a stressful job that is not stimulating to me (and which probably increases my pain), to continually increase my income and hopefully build a nest egg that will enable me to retire and do all the things I neither have time nor $$ for right now... but what if, by the time I've reached this nebulous financial goal, I'm physically incapable of living out any of those dreams? What was it all for? What was the point?

Chronic, increasing pain, has made me start to re-evaluate my life choices at the most fundamental level.

At some point it leaves you wondering if you shouldn't just throw the towel in and, instead of killing yourself working for tomorrow, take a step back to try and enjoy what you have today. I continually, mentally war with myself on this subject. To give up everything I have worked so hard for now - my house, my career and income (and everything that allows me to do, not least of which is spend $10k trying to fix myself) - seems almost unfathomable, heartbreaking even. Without money I cannot travel the world and just the thought of having that dream yanked away from me makes me want to hyperventilate. I LIVE for the prospect of my next trip, my next adventure, for seeing the world, experiencing new cultures, for the moment of stepping off a plane in a foreign land and soaking up the new smells and sounds. (The only other thing that makes me feel this way is photography. Thank God I have that at least.)

Yet, at the same time, what if I never get to the end of the rainbow? How much will the "prospect" of all those things matter 10, 20 years from now if I don't have the ability to enjoy them anyway? 

Then, as I mentioned in my previous post, there is the memory loss and the lack of bandwidth to be "there" for my husband, my daughter, and my parents. They get the worst of me all the time because they get what's left at the end of the day, the end of the week. These days that's not a lot. I know they love me, understand, and forgive me for it for the most part but I would like to enjoy my time with my family, not just "get through it" in the hours before I can go to bed and finally exhale.  

For the first time in my life, I find myself seeking the ear of a good therapist. I have almost never been as uncertain about the direction of my life as I am right now. It's an unusual and uncomfortable place for me, not being able to sort through, and make sense of, my various thoughts and feelings. I have always felt sure of myself, hopeful, and empowered. Even that has changed for me. I feel a little lost in life right now and perhaps some of this is being "30-something', certainly pain is not the only thing contributing to my unease, but it is most definitely the most defining element of my life right now - like it or not (I'm leaning toward NOT.) 

Maybe all of this sounds a little dramatic to you.  If I was an outsider looking in, I might agree. But it is what it is. Clearly, I'm not all that happy with the status quo either. I never imagined this "place" for myself. I don't want to be here. I'm trying not to be.

And to be clear, if you didn't read my last/first post on this issue, I'd like to reiterate after all of this, that I am NOT seeking sympathy here. I appreciate the support of friends but don't need a shoulder to cry on. I am looking for answers, not condolences.

Which leads me to my next post. My latest diagnosis. 

Stay tuned...

The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself - Mark Caine


Joy said...

I'll accept that writing this lenghty post puts you in an uncomfortable position so you have to break it up...I'll wait...

michele sunseri said...

I'll wait for your diagnosis too. I just hope it is one that you can find a cure within. i don't know if I can handle you getting a diagnosis that says, it is what it is and you have to continue to live with it. Just out of curiosity, have you had a CT scan to make sure there are no lesions in your brain. I think I google too much...

Vickie Horvath said...

Your posts remind me of a good book, you keep me wanting more with each word your share and leave leave me hanging so I'll come back to hear the rest.

Your drive and determination to find answers and solutions are an inspiration and we should all take a page from this book for our own lives.

Hugs to you my dear

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