Saturday, May 11, 2013

I want you to know...

Tomorrow is a special day, a day everyone knows about, a day that is celebrated annually around the world - a day when we celebrate our mothers.  It is also a day that I have never before celebrated or known about, a day I probably would never of heard about had I not been diagnosed with Chronic Fatigue Syndrome.  Tomorrow is International Chronic Fatigue Syndrome and Fibromyalgia Awareness Day.  
I felt compelled to share more of my daily symptoms and battles with CFS in hopes that it may raise some awareness.  Before being diagnosed with CFS, I barely knew anything about it.  I was able to reason that it meant being fatigued or tired for a long time.  And unfortunately that is what is assumed by many.  It is not recognized to be serious by the general population and some doctors will not even see patients who have been diagnosed with it (my mom called the Mayo Clinic and they told her they "don't do fatigue issues" but we may not be okay with that).  Thankfully medical awareness is slowly rising and research is being done; however, much remains a mystery or unknown.  I hope that in sharing my story it may make a small impact and raise some awareness for the many who suffer from this disease that can be so debilitating.
Little is known about what causes CFS.  In my case, they think it was of viral origin; however, I have not been found to have any infection throughout the six months that I have been dealing with this.  Although it seems like forever, six months is nothing compared to many who suffer from CFS.  Six months is the bench mark of when they can officially diagnose someone with CFS, although I was diagnosed by one of my specialists after two months with mild CFS; however, since then he now considers it to be a moderate case.  Yes, more testing is being done and I am going to see other doctors to see if they have another opinion, but regardless of whether I will fight CFS for a long time or not, I know how it feels.  I know it is so much more than being tired.  I know an extra nap will not fix it.  I know that it is not because I am lazy and not wanting to do anything.  I know that exercise, eating healthy, and getting enough sleep will not reverse my symptoms.  I know that if I push myself, I will crash and be worse off.  I know that well wishes of "Feel better soon" are said with the best intentions but can be frustrating and at times make me feel as though no one understands.  I don't blame anyone who says that for I too hope and pray for that.  I believe God can heal me but I am also aware that it may not happen.  I may not receive a complete physical healing miracle but that does not mean I am not hoping with every ounce of my being for that or some sort of treatment that helps.  
I wish Chronic Fatigue Syndrome was not called chronic fatigue syndrome because it really does not sound that bad.  It does not do it justice for my list of symptoms is much more than being tired.  I am going to tell you more of what I feel and think but please know it is not for sympathy or well wishes. In sharing more of how I feel, it is not to belittle other struggles, health related or not, but to build awareness and be a voice.  My desire is for people to gain a small understanding of where I, and the many who have CFS, are coming from.

So here it goes...  
My life is unpredictable with CFS.  Symptoms seem to come and go without reason or explanation.  I do not know what I will have energy to be able to do and my energy is used up by activities of daily living (such as brushing my teeth and getting dressed - and sometimes these are even too much!) and health care appointments.  I feel as though I have pulled an all-nighter all the time (which I have only done once in my life before my Microbiology final exam!).  My sleep is never restorative.  In order to sleep I take three different types of medication.  Without them, I would wake up over five times a night, struggling with bouts of insomnia.  I tried melatonin, UV light therapy, magnesium... they helped a bit but then stopped working at all.  I never feel rested from my sleep but I am grateful for the sleep I get now.  It is one of the 'normal' things I can do.  I love escaping into my dreams for when I awake I am instantly met with the reality of my illness.
My body feels like a thousand pounds at times, I get general body aches like when you have the flu, I get a numbing pain that goes up my legs and arms, fierce chest pain, and a headache that wraps around my head that will not relent.  
I have Postural Orthostatic Tachycardic Syndrome (POTS), which basically means when I change positions from lying down to sitting or standing, my heart rate raises and my blood pressure plummets causing me to get dizzy and lightheaded.  It feels as though the blood has drained out of my head and I cannot see properly.  I have to hold onto something in fear of passing out and falling to the floor.  I help combat this I am on a beta-blocker and also required to have 9 grams of a salt a day (sounds great but in order to get that amount I put a scoop of salt on the back of my tongue three times a day and drink it down!)
My legs feel like they may collapse at any moment when walking and lifting a fork is sometimes too much to handle.  I struggle with depression and anxiety.  I am easily overwhelmed when plans change.  I sometimes find it hard to find the right words and cannot concentrate for more than fifteen minutes while reading.  My brain feels as though it is in a fog at times.  I get sensory overload from too much noise, movement, or light around me.  I have poor temperature control and am often too hot or cold.  My feet are usually freezing.  I get hot flashes and I'm only turning 22!  If I do too much, my symptoms get worse, something they call post-exertional malaise.  
I take over 30 pills a day (prescription, OTC, vitamins and minerals) in hopes they may help relieve my symptoms or strengthen my immune system as it is trashed.  I have noticed some pills helping but generally nothing relieves too much.  But some is definitely better than none!
I have not driven a car since the beginning of November.  I have not been able to dance, sing, or paint.  I have not been to church in over a month.  I haven't been able to go for a run, bike ride, or even leisurely walk.  When I choose to walk, it is because I need to get somewhere.  I do not have the strength to go exploring, hiking, or traveling.  Most of my day is spent in silence and in bed. 
I have not been able to do very much, been able to feel independent, nor have I been free of pain or fatigue.  But although this is my reality, I choose not to let it define me.  The disease is not my life, it is just a part of it.  A part of my life that comes with much learning and growing closer to God.  A part of my life that has allowed me to simply be still.  A part of my life where I notice the small things and view every accomplishment as a huge one.  A part of my life where I have been able to share and encourage others in ways I never did before.  A part of my life where I am learning that being weak is okay, good really, as it is where Christ's strength shines through, where I am less and He is more.


  1. Thanks so much Rebecca for bringing light to this situation! My prayers go out to you, and those like you who suffer from this debilitating condition!

  2. So well put. This blog post in itself is a huge accomplishment! So proud of you my friend for so many things.


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