Spoons vs. PRs

Spoons vs. PRs

Some days I feel like I can conquer anything – I set a new squat record, have an awesome session with a PT client, cook a dinner that impresses my very kitchen-savvy fiancé…little things that mean big wins for someone with chronic pain.  But on other days, it takes everything in me just to get out of bed and make my morning pour-over.

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Most who are remotely familiar with chronic pain have heard of the spoon theory – it’s a metaphor that describes daily life with chronic illness. Spoons represent the amount of energy one has to get through the day, and these “spoons” can only be replenished with rest.  Someone with chronic pain may have far fewer spoons than the average person, or it might require a greater number to complete a basic daily activity.

I often pretend not to identify with this metaphor, mainly because of my stubborn, try and stop me mentality. I try to be careful not to overdo things, especially when I’m not feeling well, but I usually fight to will myself into having the energy to get things done, no matter the consequence. Deep down, I hate being labeled as chronically ill and it lights a fire within me to accomplish everything I have to get done, even if it takes everything out of me.

This whole theory plays an enormous role when it comes to fitness, and I think this is where I have finally learned to give my body the rest it so desperately needs.  As I write this, I know I’m supposed to be at the gym for the dynamic upper-body workout I had planned, but I’ve been glued to my couch since 8 o’clock this morning thanks to being gone 15 hours yesterday for a wedding. I could will myself, as I so often do, into changing into gym clothes and driving the three miles to my gym, but even so, I know how poorly today’s lift will go and how dejected I will feel afterward when I haven’t accomplished all I set out to do.

I always tell my personal training clients that no matter how much you don’t want to come to the gym, you’ll never regret it once you’re moving weight and getting those endorphins flowing. And I truly believe that. But I also know that when given the options of training with blinding pain and balance impairment, or taking medication that will tame my breakthrough pain but force me to stay home much of the day, I’m going to take an elective rest day and get myself better. 

I guess my whole point here is that we have to give ourselves permission to rest. I know I’m not the only “spoonie” out there who feels immense guilt when s/he can’t muster the strength to do something they want to or should be doing. But it’s so very important to acknowledge our pain and allow our bodies to take a break from climbing the mountain that is everyday life. And I suppose that’s why I’m writing a blog post for the first time in three years. Here is my official recognition that today I am too tired to go to the gym, and that’s okay. I know that by taking a lazy Sunday to recover, I’ll be able to go in after work tomorrow and have a far more productive lift.

So to all you spoonies out there trying to convince yourselves to push through exhaustion, pain, depression, or whatever you’re battling…know that, just for today, it’s okay if you yield, just enough to lay on the couch with some dark chocolate, coffee and Netflix. Take care of yourselves, and save that can-do attitude for the week ahead!

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30 Things: Invisible Illness Awareness Week

30 Things: Invisible Illness Awareness Week

So I know it’s already Tuesday night and I’m just now talking about Invisible Awareness week, but I’m a new blogger so give me a break!

Although I’m very open about my dealings with Ehlers-Danlos Syndrome, there is still so much about EDS that many of my friends, family and acquaintances don’t know. Tonight I will share this blog with my family and friends for the first time, and I hope that they will read this entry and leave with a better understanding of what an invisible illness is and perhaps who I am. Deep breath…here goes.

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW:

1. The illness I live with is: Ehlers-Danlos Syndrome

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: Mainly 2006, but somewhat before then as well.

4. The biggest adjustment I’ve had to make is: Pacing myself. I tend to jump headfirst into whatever I’m doing, be it a workout routine, a riding lesson, homework (OK maybe not so much homework), cleaning ad nauseam. I’ve had to learn to slow down, stretch, warm up, and take more steps in order to protect my joints and my sanity.

5. Most people assume: I’m perfectly healthy. To look at me you’d never guess I suffer from chronic pain. The most common response I get is a surprised “but you’re in such good shape!” But the reason I can function is because I work to stay in shape.

6. The hardest part about mornings is: Getting a move on. Waking up can be hard, especially when I’m having sleeping problems, but depending on what I did the day before, the weather, or if the stars align I often have a very slow start to the day until my body warms up. Again, I have to pace myself.

7. My favorite medical TV show is: House, M.D. For a while I thought I wanted to become a diagnostician because of that show. And honestly I still think I’d enjoy that…puzzles fascinate me. Conversely, shows like Dr. Oz and The Doctors just piss me off…I can tell you that no fad diet that lets you drop ten pounds in two days is either healthy or long-lasting, and I have a bachelor’s degree in Nutrition to back me up!

8. A gadget I couldn’t live without is: My TENS unit. I don’t use it every day, but sometimes it’s the only thing that calms down persistent spasms and relaxes sore muscles.

9. The hardest part about nights are: Waking up unable to fall back asleep because of pain. Nights can be so long….

10. Each day I take __ pills & vitamins: 8 pills in the morning and 3 at night, plus supplementary pain relievers as needed.

11. Regarding alternative treatments I: Fully believe in their ability to supplement and sometimes replace a traditional approach. Craniosacral therapy does wonders for my symptoms, and I only wish I could have it done more often. The key is finding balance between the traditional and the holistic, and tailoring that to your needs.

12. If I had to choose between an invisible illness or visible I would choose: I would never wish for anything other than what I have. I believe I was given this condition for a reason, and although I wouldn’t wish it on anyone, I’m glad I can use it to try to make a difference in the lives of others.

13. Regarding working and career: Right now I’m planning to substitute teach until I get into medical school. From there, I’m not 100% sure what’s going to happen. But I’m very passionate about medicine and fully believe that in spite of the pain and difficulties I’m going to face, I will survive medical school and become a successful D.O.

14. People would be surprised to know: I haven’t experienced painlessness in at least seven years, probably much longer. I honestly don’t remember what it feels like to be without pain. But I don’t let it stop me from lifting weights, riding horses (even jumping!) and keeping a positive attitude.

15. The hardest thing to accept about my new reality has been: Honestly, I don’t know what the one hardest thing is. There’s the fact that I have a 50% chance of passing my condition on to each of my children, but it’s not going to keep me from having kids. I guess EDS’s impact on my academic performance has been the hardest thing to stomach. That and the ignorance some people have when it comes to chronic pain.

16. Something I never thought I could do with my illness that I did was: Compete over fences for the Ohio State Hunt Seat Equestrian Team and qualify for regionals on the flat. Honestly I never even imagined I would ride in college, let alone be competitive!

17. The commercials about my illness: Don’t exist! Sadly, I doubt EDS will ever receive much positive publicity on television. Maybe the work I do here will help make up for that!

18. Something I really miss doing since I was diagnosed is: I don’t know, I’m so fortunate that I can still do most of the things I used to, even if it is to a lesser degree. I do I miss feeling fearless on a horse. It’s not a healthy thing to be over-confident, but I can no longer gallop full-speed through the fields around my house like I used to!

19. It was really hard to have to give up: Bitterness. On my About Me page I talk about the accident that brought my EDS to our attention. I have never blamed anyone for the accident, but the way I was treated for the next two years brought me a lot of emotional pain. Learning to let go of that was unbelievably difficult.

20. A new hobby I have taken up since my diagnosis is: Blogging! Duh, you say. I just figured having a way to both fill my need for venting and to help others with the condition, as well as potentially raise awareness, was a healthy thing!

21. If I could have one day of feeling normal again I would: Take my favorite OSU horse, Devil, out for a good long hack and do some cross-country jumping.

22. My illness has taught me: Perseverance, forgiveness, patience, empathy…this list could honestly go on forever. I struggled a lot the first few years I had symptoms, but I’ve been blessed with such kindness and grace from so many people that I have no doubt in my mind of the good in this world.

23. Want to know a secret? One thing people say that gets under my skin is: But you look so normal! Unless you’re suffering from an invisible illness you cannot understand how upsetting that innocent statement is.

24. But I love it when people: Give me a chance to explain the condition without giving me the “oh yeah I have back pain” or “my cousin is double-jointed” phrases. Almost everyone has back pain, I get it. That’s not what I’m here to talk about. I also love and cherish the relationships I have with my physiatrist, his PA, my physical therapist (she’s the best in the world!), the x-ray staff, and everyone else who has been there for physical therapy, spinal procedures and lots of tears.

25. My favorite motto, scripture, quote that gets me through tough times is: Jeremiah 29:11. I know it’s a little cliché and overused, but it has brought me a lot of comfort over the years. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

26. When someone is diagnosed I’d like to tell them: Keep moving. Be proactive. Find your weaknesses and work to overcome them. Most of all, do everything you can to stay positive. You can either watch this condition take over your life or you can do something, anything, everything, to fight it.

27. Something that has surprised me about living with an illness is: I’ve become a much more positive person. It is so easy to let something like chronic pain get ahold of you and suck the happiness and optimism out of your life, but I’ve done the opposite. I feel so lucky to be able to have such an outlook, and I’m sure I wouldn’t if it weren’t for the incredible support system I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: OK this has nothing to do with EDS, but when I was in the 3rd or 4th grade I got chicken pox and our neighbor/dear family friend brought over brownies and a kit with tape and construction paper “pox” for me to tape on everyone else so I wouldn’t feel so bad!

29. I’m involved with Invisible Illness Week because: If we don’t share our experiences, how will others learn that these problems exist? And more importantly, I’ve been able to take at least some control of my condition, and by sharing that I hope to empower others who suffer to do the same.

30. The fact that you read this list makes me feel: Humbled. I want to say exposed in case any of my friends/family are reading this, because it’s one thing to share like this anonymously, but another to share such intimate thoughts with those you know. But I’m humbled that you think this matters enough that you’re still reading, and I’m hopeful you’ll share this so that someone else may learn from my experiences!

Quote

For every compl…

For every complex problem there is an answer that is clear, simple, and wrong.

– H.L. Mencken

This short quote epitomizes the struggle of diagnosing and understanding Ehlers-Danlos Syndrome.  A puzzle of seemingly disconnected symptoms, it is often misdiagnosed as an easier solution such as arthritis, growing pains, lupus, fibromyalgia, or the ever-popular “it’s all in your head.”  

Look for a blog in the coming days where I define EDS based on my own experiences and explain why the simple answer is often the wrong one.

Everything Appears to be Normal

Everything Appears to be Normal

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Anyone suffering from EDS or a similar “invisible” illness can understand how frustrating these words are.  The event that finally made me start this blog involved hearing this from a cardiologist who two weeks earlier had told me that I had a hole in my heart.

The experience I’ve had with this doctor deeply saddens me, but also strengthens my resolve to become a physician who respects and believes in my patients.  Upon first meeting Dr. Norton (name changed to protect his identity), he failed to take a few minutes to ask about my life and try to connect with me on a personal level.  In all experiences I’ve had with physicians, both as a patient and while shadowing, this has been key to providing the best care possible.  You cannot effectively treat your patient if you do not know them, if you fail to understand their lifestyle and how it is impacted by their symptoms.  Cookie-cutter patients just don’t exist.

I received a copy of his notes from this appointment and saw that there were multiple errors caused by his failure to ask important questions about the history of my symptoms during the exam.  When he told me I had an Atrial Septal Defect (ASD), he in no way explained what it was and simply told me we would do an echocardiogram with a Bubble Study.  Because he didn’t bother to get to know me, he assumed I was just an uneducated patient who wasn’t deserving of an explanation because it would be a waste of his time.

I spent the next five days or so thinking my life was about to change drastically, that I would have bypass surgery and a difficult healing process that would be worsened by the EDS.  (Understand that I had to do my OWN research to find this out, because he didn’t bother to tell me what complications accompany such a defect).  So when during the test no hole was detected, I was speechless.  As it happens, he couldn’t actually diagnose the ASD until performing the test, and therefore put me through all of that emotional distress for naught.

My most recent encounter with Dr. Norton involved a stress test I had done a few days ago, which was the last straw.  After the test he told me my results were above average compared to his typical patients (most of whom are double or triple my age with congenital or other heart problems), and that I seemed perfectly normal.  When I asked him why I get dizzy doing lunges and squats during workouts, his answer was that perhaps I wasn’t in as good of shape as I used to be (keep in mind, I’m a 22-year old woman who lifts weights 4 days/week).  He then suggested that maybe I should warm up before I work out, but if he’d taken that time to get to know me he’d know that I have an academic background involving health and exercise and I’m smart about warming up before a lift.  When I asked him to explain why I suffer from unpredictable presyncope, dizziness, shortness of breath and tunnel vision, he said I’m just going to have to live with it.  He continued to provide essentially one-word responses to my questions; answers that insulted my intelligence and offended my lifestyle.  The appointment ended with him announcing that there was nothing more he could do for me.

And he’s right, there is nothing more he can do for me.  I’ve been so fortunate to have met with almost exclusively wonderful doctors who respect me, understand that I am well-educated in topics relating to healthcare and believe me when I say something is wrong.  But when I do encounter a physician like Dr. Norton, I’m not willing to roll over.  I’ll keep looking until I find the right cardiologist who is capable of getting to know me as a human being and taking all of my symptoms and my lifestyle into account.

I’m not sharing this story to complain about a crappy doctor (okay, maybe a little).  I’m sharing this because there is an important lesson to be learned: YOU ARE IN CONTROL OF YOUR HEALTHCARE.  YOUR DOCTOR WORKS FOR YOU.  No one knows your body better than you do, and it is important to trust yourself when you think something is wrong.  As a future physician, I can tell you that doctors do not know everything and one doctor is not right for every patient.  If you’re not happy with your treatment plan or the outcome of a physician encounter, then change it.

It’s time more people start taking control of their healthcare, and it’s time more doctors start personally investing in the lives of their patients.

What’s with your blog title anyways?

What’s with your blog title anyways?

When someone has a condition that affects their life, a hindrance, a handicap, whatever you want to call it, they often say, “I’m living with it” or “I’m living in spite of it.”  And I suppose you could say that I am living with Ehlers-Danlos Syndrome.  But more importantly, I am living because of it.

If you’ve read my About Me page, then hats off to you, you’re ahead of the curve.  On that page I talk briefly about what led to my diagnosis of EDS.  A spinal injury I suffered in high school sent me in a spiral of pain that will be with me the rest of my life.  In the months following the accident I often asked myself, why me?  Remarkably, I found my answer.

It took about a year to realize there was anything actually wrong with me.  During the accident, I was thrown forward and spotters failed to catch me during a football halftime show, but after the breath-taking (literally, on the video you can hear the audience gasp) moment when I hit the ground, I jumped up and ran off the field in one piece.  The initial pain appeared immediately, but it took months for the chronic effects to set in.

Sixteen months after the accident I had surgery to repair a tear in my shoulder, the first known damage we could detect.  That surgeon then sent me to a team of spinal surgeons and a physiatrist, who determined ligaments in my neck tore and never healed during the accident, leaving a few of my vertebrae especially unstable.  But the gravity of my situation was burned into my memory when I was told I most likely shouldn’t have survived the accident.  One of the physicians told me that my body should’ve laid flaccid, and that I theoretically should’ve been left quadriplegic at best.

During my exams with the doctors we determined that I have a unique level of hypermobility (flexibility, bendiness, whatever you prefer to call it).  If you’ve ever seen a contortionist featured on a medical show like Dr. Oz or The Doctors, they’re likely suffering from this same condition.

It turns out the very problem that caused all-too-often joint aches and sprains saved my life.  Had I not had such flexible, pliable tissues, my spine likely wouldn’t have been able to sustain the impact and whiplash that occurred during the accident, and it probably would have broken.

Considering that Type III Ehlers-Danlos Syndrome, the condition that causes my hypermobility, has an estimated prevalence of 1 in 10,000-15,000, it is possible that I was the only student in my school who could’ve survived the accident.  (I actually believe this number to be far too conservative, but that’s a story for another day).

So I am alive today to tell this story because of Ehlers-Danlos Syndrome.  And I can’t help but believe that I have this condition for a reason, that I’m meant for something bigger than myself.  

Why am I even doing this?

Why am I even doing this?

I ask myself that question on a regular basis. But right now, I’m going to ignore that part of my subconscious that tells me this is a bad idea and I’m just going to do it. What’s the worst that could happen?

I’ve thought about writing a blog for a long time, but a few nagging doubts in my mind have always stopped me. I don’t want to be one of those people who blogs about their unremarkable life and thinks they’re making a difference. I guess that’s what scares me away from this sort of thing. I certainly don’t think my life is so important that it should be immortalized online. I don’t even like the term ‘blog,’ it just reeks of pretentiousness. I don’t have a magnetic sense of humor. I often start things and never finish them. I tell myself my life is pretty normal.

But recent events have urged me to believe that my story is worth telling, as it’s being written, because just maybe someone else can learn from my experiences. So here goes nothing.