I am a Product of Modern Medicine

Last night on CBS news with Katie Couric, news of a study on Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue Syndrome was broadcast (to find out more, check out http://www.prohealth.com/library/showarticle.cfm?libid=15959 and the news broadcast at time point 17:14 at http://www.cbs.com/cbs_evening_news).  The study was conduced at the University of Medicine and Dentistry of New Jersey and claims that, unique proteins discovered in spinal fluid can distinguish between CFS and Lyme’s disease as well as from people in normal health.  If chronic fatigue syndrome can be detected through specific biomarkers, it is much harder to deny its existence.  In addition, such a study will give great insight into new treatments as well as allow for differentiation between CFS and Lyme’s disease (which present with very similar symptoms).  Before I go on, let me just say that I am in no way a medical professional and that I can only offer my opinion on the matter.  With that being said, if this study proves to be valid, it is a pretty big deal.

Having lived with chronic fatigue syndrome, I try my best to keep up with current research.  Whenever new information is released, I am reminded of the large role that modern medicine plays in my life.  For as many times as I’ve felt let down by the medical system, I can honestly say I wouldn’t be here without it, or at least I would not be the same person.  My thyroid would not have the capacity to control my body’s metabolism.  My POTS would leave me unable to walk or stand and my irregular blood pressure would take a toll on my heart.  I would be severely anemic.  My stomach would probably be a mess. And if that wouldn’t be enough to kill me, I would probably be depressed enough to commit suicide because my neurotransmitters are so screwy.  I don’t mean to sounds dramatic, but by having tests available to find my deficiencies and taking pills 4 times a day to counteract them, I am making my life livable.  And that’s a hard pill to swallow (pun intended).

I often hear from family and friends, “everyone has something” or “we’re all on pills.”  While these comments sometimes feel like they minimize my struggle, they do hold some truth.  In the past, there was no such thing as high cholesterol, Liptor, and Aspirin regiments; people just dropped dead of heart attacks.  Today, basic needs such as dentistry and orthodontia allow people to eat food with the nutrients necessary for survival.  If I hadn’t worn braces for 4 years and had several teeth removed, I’m not sure where I would be (probably in dentures or with a lot of extra teeth like a whale).  And then of course we can’t take for granted the fact that most of us in America have proper nutrition and hygiene to allow for basic functioning and prevention of disease itself.  We are so lucky that if our sex lives aren’t satisfactory, we can take Viagra to make that connection good again.

I guess what I’m really trying to say here is that modern medicine has pervaded our lives in immeasurable ways.  The bottom line is it makes chronic illness possible and it is the reason I am able to sit here and write to you all.  We are living longer than ever and are increasingly more functional then ever, despite odds that say we shouldn’t be.  And it’s only going further.  So for as much as I harp on doctors who have denied my illness, made me feel like a lab rat, or given me harmful treatments, it seems to be part of the package.  In a way, I feel proud to be chronically ill because I represent the possibility of managing symptoms and living a full life.  At this point in my journey, I don’t expect for a miracle cure to come along and save me; I consider it a miracle to be doing what I am doing right now. 

Moving Forward

For the first time in the past nine months I can finally say with honesty that I am at peace.  I am at peace with myself, as I am.  At my core I know that everything is going to work out.  My perspective has shifted and I am able to frame my situation in a more hopeful way.  Like, for example, having to take medical leave from school for a year.  At first, making that decision felt like a huge, defining event that would somehow alter the course of my life.  I would be distanced from my friends both physically and emotionally while they complete their schooling and I feared that I would somehow get left behind.  Now, I realize that in the scheme of things, one year out of an entire lifetime isn’t such a big deal.  And the fact that I’m not in school right now does not mean that I am not moving forward with my life and learning new things everyday.  Actually, I think that this year has taught me more about life and myself than a year of school ever could. Having experienced total loss of control and becoming completely dependent on the help of others, I know that no matter what happens I have the supports that I need to survive. The fear that used to weigh me down everyday is gone.  I’m finally living in the present, taking each day as it comes, and accepting my illness for what it is.  I have a strong sense of my limits and when to say no, but I can also begin to start expanding those boundaries a bit.

I guess you could say that I have come to terms with my illness.  It’s a part of me, but it doesn’t define me.  And I’m no longer at war with it.  I’ve accepted that it is here to stay and I am designing my life in a way that accommodates my needs.  I don’t feel such an intense frustration when I flare up and have to cancel plans or I am stuck in bed for periods of time, I just kind of go with it knowing that it won’t always be this bad.  For months people would ask me “when are you coming back to school?” or “how are you doing?” and I would always reassure them, I’ll come through this and I’ll come back to school.  While I made this claim to the world, I didn’t totally believe it.  I needed to say it for myself in part because I was probably a bit in denial, partly because I didn’t want people to give up on me and lose hope, and partly because there was a small sliver of a piece of me that did believe I would improve.  My mantra was “it won’t always be like this” and after saying and thinking it enough times, I have actually come to believe it. 

And I have improved!  I started this blog last October but before that I was too sick to do it.  I was either sleeping or too dizzy to see straight, and I was fainting several times a day.  Now, I am able to write, read, walk, and sometimes even drive.  The fainting has been replaced by manageable light-headedness and my focus has returned.  I have a blog with readers who give me a voice and validate my feelings (please leave me a comment and let me know who you are!  I would love to get to know more of you!).  I manage to get out of the house at least once a week and I can handle being in crowds and doing some gentle activities.  I even recently joined an online dating site (long story)!  I am filled with hope for the future and am motivated to continue improving.  This is only the beginning. 

That's So Cliché...

The other day I was feeling a bit desperate which led me to write a list of motivational words to cheer myself up.  As it turns out, it did the trick so I thought I’d share it with all of you:

Be patient.

Things will get better.

Time heals all wounds.

All is not lost.

Family and friends aren’t going anywhere.

Seek gradual improvements.

Be good to yourself.

Breathe.

Find comfort in small things.

Listen to your body.

Get a second wind (or third or fourth…).

Start small and grow.

You are not your illness.

Strategize, make plans, set goals.

Stay in the present.

Don’t compare yourself to others.

Never give up.

Stop feeling guilty.

Stop judging yourself.

Love yourself.

Give yourself some credit.

Be proud of your accomplishments.

Pamper yourself.

Nurture yourself.

Learn to let go.

Don’t sweat the small stuff.

Be appreciative.

Rise to the occasion.

Conquer your fears.

Relax.

Rock Bottom

Last night my worst fear was realized when I was taken to the emergency room in an ambulance after a particularly scary looking fainting episode.  The emergency room doctor admitted that given the time of night and the lack of specialists around, the most he could do was run a number of tests to ease my fear of what just happened.  He tested my blood and urine, gave me a cat scan, and performed a lumbar puncture to evaluate my spinal fluid.  Not surprisingly, everything came back negative.  
 
That is when I had a major epiphany: I am not dying.  Ok, this sounds really obvious due to everything we know about chronic fatigue and fibromyalgia, but let me explain. 

I finally came to the realization that chronic fatigue syndrome and fibromyalgia are not going to be what kills me but I had been living my life as if they were.  I was resisting going out because I was scared of getting dizzy and fainting.  And now, here I was sitting in a hospital bed, the place I had been doing my best to avoid.  Confronting that fear, I came to realize that this is the worst it can get: a bunch of negative test results.  I am not going to let this fear get in my way anymore.  I am going to go out with my wheelchair and live my life. 

Some questions to consider: 

How do you confront the fears associated with having a chronic illness?

**As a side note, I had a meeting with a new doctor last week that has some good ideas on how to control my postural tachycardia and fainting.  I’m hopeful that there are options out there to make my symptoms more manageable.