Friday, May 13, 2011

CFS/ME and Fibromyalgia Awareness Day and My Story...

(Please note that I had this post published yesterday and it seems in the process of blogger fixing glitches that my post disappeared. So, let me try this again...)

     Today is CFS/ME and Fibromyalgia awareness day. You may or may not have heard of one or any of these illnesses. Considering the day, I thought it fitting to share more of my story. I have Chronic Fatigue Syndrome (CFS/ME) and this month I was re-tested for and diagnosed with Fibromyalgia. These two illnesses have rocked my world and then turned it upside down. But, let me start at the beginning…

     I think (though this is an assumption based on looking back) that it all began in October of 2009. My family and I took a family road trip for a family reunion. Life was good. I was a very busy type “A” high-school student. I was (and still am) home educated. I was also a very active member of my community. I worked hard in my school work, tutored twice a week, volunteered as a student leader at my youth group every Wednesday afternoon and evening, participated in a local home-school co-op one day a week, baby-sat, relaxed with friends, served at my church on Sundays as an assistant teacher working with the two and three year old class, got together with friends, was a part of a small group that met once a week, worked watching children at another church every Saturday night, and I was preparing for a local Rotary Club speech contest. I enjoyed everything I did. My sister told me it seemed like every time I came home I was in the process of going again. I was busy and I loved it. The only real stress I was going through at the time was a strained relationship with someone I love. I had a wrong attitude and I regret being overly sensitive about things. Bitterness is a dangerous thing, once it takes root it is difficult to remove. (By the way, that relationship is great now! God has helped me work through my bitterness and issues. I am so thankful that the relationship is now healthier than I ever imagined was possible.) Well, I don’t know if my busyness and that stressful relationship impacted things or not (it probably did), but there I was on a family road trip. We had driven most of the day and arrived late that evening at our destination. After visiting with family we went to bed. The next morning I woke up feeling a little odd. I felt very heavy, tired, and achy. But, me being me I was determined to push through and head to the family reunion with everyone else. Once at the community center where the reunion was being held I mixed and mingled with everyone for awhile. I began to feel heavier, achier, and completely exhausted. My Dad took me back to where we were staying and I went to bed. I slept and slept, then I slept some more. When I wasn’t sleeping I didn’t have the energy to do anything. I didn’t even feel like reading a book I had been excited about reading on the trip. I was utterly exhausted. After two-three days or so of rest I was able to spend more time with the family. I still didn’t feel back to normal, but I seemed to be recovering and just figured it was a virus and that I would be getting back up on my feet soon.

     I did seem pretty fine after that, at least for awhile. Maybe I got a bit more easily tired, but for the rest of October through February something was slowly changing. That November I got Bronchitis and it took me a very long time to recover. (I do believe I was “out of commission” for three weeks with the bronchitis.) I began to have more issues after that and I began to have very odd things happen. I was losing energy, fatigued, occasionally having dizzy spells, and more. By February my parents and I were getting concerned. I had been lessening my activities little by little, my grades had been dropping lower and lower, and I was just plain tired. I would go about my weekly schedule and then one or two random days a week I would just crash with exhaustion. At first we thought maybe I just kept getting sick with viruses, but eventually we just knew something wasn’t right.

     We went to my doctor in February and she wanted to run some blood work. She was pretty sure I had a thyroid problem. Well, all of my blood work came back within normal range. I didn’t know it then, but that would soon be a pattern. I had lots of blood work done. Each time someone thought we had figured out what was going on, but my test results came back normal. After a scary incident that had me at the emergency room one night I also saw a Cardiologist, had an MRI done, saw a Rheumatologist, and had a lot more blood drawn. (The night I ended up in the emergency room I had drank a large cup of coffee earlier that evening and we are now pretty positive that the caffeine sent my body into a sort of crazy panic attack. I am now VERY caffeine sensitive! Anytime I eat or drink something that has caffeine in it I have increased anxiety and I feel like I have to be moving. Thankfully, I can still enjoy a bit of chocolate in the day time.) Well, you may have guessed by now that for awhile no one could figure out what was wrong. Some believed me that something was wrong and some didn’t. There were odd things like increased reflex responses, light sensitivity and overly dilated eyes, sore throat, swollen lymph nodes, achiness, exhaustion, brain fog, memory issues, and increased symptoms when I exercised. I even had a difficult experience with one doctor who told me that I just needed to relax over the summer and workout more. (Before I got sick I happened to be in the best shape of my life. By the time I saw that doctor I was resting a TON and had dropped many activities.) I cried after that appointment. Actually, I cried after a lot of my doctor appointments. I remember after spending hours at the emergency room and having lots of testing done the doctor kindly came back to my Mom, sister, and I and told us the good news was that I didn’t have cancer, but she couldn’t find a single thing wrong with me. She gave us referrals and we left to the car. I remember laying my head in my lap and breaking down into sobs. My Mom rubbed my back and promised me we would figure out what was going on with my body. It is unexplainably painful when your life is crashing down and falling apart around you, and yet no one can tell you why or even give you a name for what is ravaging your body.

     Finally, in June of 2010 I found my current doctor. Honestly, I believe it was a God thing. Three different people from three totally different social circles approached my mother and me separately telling us about a doctor who treats Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), and Lyme disease. He took the time to listen to my parents and I, reviewed my charts and blood work history, examined me, and diagnosed me with CFS. With supplements and one pharmaceutical he helped me begin to understand and improve. I continued to see slow improvement from then to December.

     Now, before I continue my story I would like to talk a short bit about CFS.

According to the CDC:

“The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include:
  • difficulties with memory and concentration
  • problems with sleep
  • persistent muscle pain
  • joint pain (without redness or swelling)
  • headaches
  • tender lymph nodes
  • increased malaise (fatigue and sickness) following exertion
  • sore throat
Other Symptoms
The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including:
  • irritable bowel
  • depression or psychological problems (irritability, mood swings, anxiety, panic attacks)
  • chills and night sweats
  • visual disturbances (blurring, sensitivity to light, eye pain)
  • allergies or sensitivities to foods, odors, chemicals, medications, or noise
  • brain fog (feeling like you're in a mental fog)
  • difficulty maintaining upright position, dizziness, balance problems or fainting”
There is a lot that is unknown about this syndrome. We don’t know for sure what causes it, how best to treat, there is currently no cure, and it is very complicated. But, the one thing we do know is that it is real. Some doctors don’t believe it is real and some everyday people don’t either, but I can tell you that it is VERY real and life altering.
Now, back to my story…

     As the months would go by my doctor would help me with supplements and advice. I would learn more and more about my limitations (or energy envelope) and the negative consequences of not listening to my body. There were times that my body would “play by the rules” and other times it would react with seemingly no rhyme or reason!
By December I had improved enough that my school had been improving (I was able to carry a work load of three classes) and I was able to be in the local home-school co-op play. (We were putting on a production of Charles Dickens’ A Christmas Carol and I was the ghost of Christmas past. It was a marvelous part!) I was no longer working, volunteering on Wednesdays, teaching on Sundays, participating with the small group, or rushing around on the go. But, I was improving slowly and learning to accept limits. During this time I was also learning to grieve in healthy ways. There is a grief that comes with this illness of CFS/ME. In a way, it is like watching parts of your “old self” die. You have to put many of your plans onto the backburner and yet still have hope, joy, passion, and drive. This illness is a physical journey, but the consequences of the physical issues also make it a very emotional journey. 

     So, time went by. Slowly I was seeing improvement and I was learning to live with the symptoms and manage them relatively well. By now it was drawing close to Christmas time and my Grandmother surprised my family with tickets to fly to see her and spend Christmas with her! This was a huge and wonderful surprise! I received the approval from my doctor and got tips to carefully travel. But, life often doesn’t go as planned. (You would think I would grasp that by now! *laughs*) As soon as the airplane took off I felt pain. I don’t really know how to best explain it. But, for the rest of the flight my body would ache and I would experience strong pain. Once to my Grandmother’s (and off the plane) I seemed decently well considering the travel and horrible reaction to flying. (By the way, before this illness I adored flying and travel. That might help put into perspective how much had changed for me to say that the plane ride was horrible.) Well, three or four days after I had arrived, my body began to protest to the colder climate and I think the airplane reaction caught up with me. I spent a lot of painful time in bed and having to be very careful. I managed through the rest of the trip with some medications my doctor called in and by resting off and on most days. Then of course, I had to fly home. Honestly, if it weren’t for wanting and needing to get home I think I would have stayed right where I was just so I didn’t have to get on another plane. But, I survived and made it safely home. Once home I spent three weeks without leaving my house except to see my doctor. The pain, exhaustion, brain fog, swollen glands, off and on low grade temperatures, and so on were awful. But, do you know what’s crazy? I can’t completely regret it. Not completely. I got to cheer up my Grandma (she lives alone and isn’t able to get out much these days), visit her in Alaska with my whole family, visit with wonderful relatives, and simply make Christmas special for my Grandma. I just can’t regret that even though it took my life downhill.

     Since then it has been a slow time of improvement. I have had more symptom issues since the trip and I have had more pain. This month I went to my doctor’s appointment and he decided to re-test me for Fibromyalgia. (In May and June of 2010 I had been tested for FM twice, once by my current doctor and once by a Rheumatologist. At both of those tests I did not have Fibromyalgia.) To test for Fibromyalgia there are “tender points” that when pressed on become very painful. I had a strong painful response to about 13 of the 18 “tender points”.  After the appointment I experienced majorly increased levels of pain. I continued to have higher levels of pain than normal for about three days after the appointment. It was a surprising and completely unexpected reaction. I had just thought my new pain was a more severe type of the body aches I had been living with as a symptom of the CFS/ME. So, it has been a new aspect for me to process through this added illness/diagnose.

     If you would like to read more about the basics of Fibromyalgia and CFS/ME I would encourage you to visit this website: CFS/ME and Fibromyalgia Information-CFIDS Self Help
By following that link there will be a basic information pages for CFS/ME and Fibromyalgia.

     If it weren’t for God and the hope and joy I have in Him, I honestly don’t think I could do this. I also couldn’t do this without my incredible family and friends. My family loves me, cries with me, laughs with me, hugs me, prays for me, provides for me, and supports me. (They also do little things like pick out a balloon for me while at the grocery store when I am not feeling well. Then they tie it to my bed so that I can watch it dance in the air currents of the fan.) I also couldn’t do this without the friends who have stuck by me in all of this. Those are the friends that make it a point to call me, text me, send me a letter, come visit with me, don’t take it personally when I have to cancel our plans (for what might seem like the 100th time), pray for me and with me, give me hugs, and they are the ones who just plain haven’t seemed to drop off the face of the earth since I got sick. I am so blessed by the people who believe me, love me, and support me in all of this. And lastly, I couldn’t do this without my doctor and his staff. Though I still deal with symptoms and pain they continue to help me and make things better. Most of all, they believe me and that this illness is not “all in my head”. (That is unfortunately not true of everyone in the medical field.)

     I have a lot of symptoms and a lot of things I don’t know.
I don’t know how my health will continue to develop for better or for worse.
I have no idea when I will become a high school graduate (though I am determined to even if it takes me five more years and one class at a time).
I don’t know if I will ever have the physical and mental energy to drive a car.
I don’t know if I will one day be able to support myself financially.
I don’t know if I will ever be able to live independently.
I don’t know if there is a man out there who will love me for me; a man who will understand the enormity of the vows “in sickness and in health”.
There are a lot of things that I don’t know.
So, I take it a day at a time. I give thanks for the little things, I pray, I love, I live.
There is hope and joy in my Daddy God. I can still dream, laugh, smile, hope, write, and be creative.

CFS/ME and Fibromyalgia are part of my body, but I am still me.

Today if I have enlightened one person to the reality of these illnesses, or if I have encouraged someone to persevere, then I rejoice!

Thank you for taking the time to read my story. (I realize that it was very long and I appreciate that you took the time to read it.)
I would like to end with something that I wrote on April 12th, 2011.

If I Were Well Tomorrow

If I were well tomorrow,
And I knew this would never come back
I would run a race,
Serve actively at youth,
Work with lots and lots of kids,
Finish high-school,
Chase my brother at the park,
Walk the dog a mile,
Take a sewing class this summer,
Volunteer at the library,
Dance to my heart’s content,
Shop at a thrift store and not be exhaustedly spent,
Go see Mema and sing her many, many songs,
Jump rope,
Travel where-ever God wants me to go,
Work at the food shelter,
Get a part time job,
Achieve the proud title of a licensed driver,
Ride a bike,
Climb a mountain,
Make a lovely flower garden,
Write a book,
Visit in person with ALL of my beloved friends,
And physically serve, serve, serve Him to my heart’s content.

But, that is not my life.
That is a dream.
Though, I can still serve, serve, serve Him; it just looks different these days.
It’s a dream that if He wants to, He could make it happen, it could be.
But, maybe He has me right where He needs me.
In fact, I think that as long as I am here, He is allowing me to be.
Some ask, “Why do bad things happen to good people?”
I ask, “Are any of us truly good?”
I know I am not.
Now, I don’t know why bad things happen to people who we view as good because they are less bad than most.
But, maybe, just maybe, He knows something we don’t.


Blessings,
Sarah

4 comments:

  1. Wow, thank you for sharing your story. Unfortunately, it's a very familiar one.

    I am very, very impressed by your positive attitude and upbeat approach to living with these illnesses. It's hard not to suffer from depression in this situation, especially for someone so young who has lost so much. Keep it up - I'm sure your positive attitude is helping you cope with illness.

    You don't mention any treatment for Orthostatic Intolerance, a condition caused by both CFS and FM. Young people often respond especially well to OI treatment - it is what allowed my two sons to go back to school. Here's more info:

    http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html

    And some tips on using heart rate to avoid crashes:

    http://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html

    Hope this helps - please let me know if you have questions. Thanks for sharing your story!

    Sue

    ReplyDelete
  2. Thank you for taking the time to read my story and for your encouraging words!

    Yes, thankfully most days I am able to walk in a positive attitude. Of course, I have days and times that I feel very down or just need to cry. There is definitely a grieving process that comes with these illnesses and how they have drastically changed my life.

    Thank you very much for sharing all of that!
    After reading your blog posts and visiting the links you provided, we are fairly sure that I am dealing with OI. Once I find a new doctor I will definitely be discussing OI and possible treatment. (I have actually been working on raising my salt intake since a few months ago. My current doctor had recommended it in regards to all my dizzy spells and such. But, I didn't realize that I might have OI.)

    Thank you again for all of the information!!! You have been very helpful to my family and I.

    Blessings,
    Sarah

    ReplyDelete
  3. Oh girl! I just wanted to be like, yes, yes, yes...throughout the entire post...I have experienced much of the physical AND emotional symptoms you described. My word...I hate that you have been experiencing that in high school already. I am so glad that you found my blog so I could find yours. Will be thinking of you and pray that God brings you to my mind to pray for you...let's keep staying connected.

    ReplyDelete
  4. Thank you so very much, Lindsey!
    Your comment majorly blessed me.

    Thank you for your kind and caring words. And, thank you for your prayers.

    I'm so glad that we've connected!

    I look forward to keeping up/growing the connection.

    Have a wonderful rest of your week!

    Simply,
    Sarah

    ReplyDelete

Hello and welcome to my blog!
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I simply ask that you please keep comments clean and respectful. Thank you!

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Blessings!