Thursday, March 8, 2012

CFS: Chronic Fatigue Syndrome

Hey there - so today (the first day I started typing this post - I take several days to write a serious post) I was thinking about how I've only posted one serious topic on this blog so far (Wisdom Teeth Tragedy) and I really wanted to keep this blog on the track to helping people with health problems. So, I've decided the next story I'd write about is about Chronic Fatigue Syndrome.

All I ask is that you take this post seriously and open up your heart and mind to everything I'm about to say. This has to be one of the hardest topics I'll ever talk about on here, and I've spoken about everything - every personal and private little detail - just so I can hopefully really help someone who is going through this terrible time in their life.

According to, Chronic Fatigue Syndrome is a viral disease of the immune system, usually characterized by debilitating fatigue and flu-like symptoms.

But in my experience, it's much more than a simple definition. More so, it's quite complex.

It all started in the winter of 2005-2006. I was in 7th grade at the time, enjoying my winter break off from school with my family around holiday time, including Christmas and New Years. But it seemed that as soon as we rang in the new year, my body started feeling something new, as well.

Now, something you need to know (which I will be much more detailed about in a later blog post) is that I was very sick as a child. I'm grateful enough to have never had to suffer through anything life-threatening or super serious, like cancer or other things. But I didn't have the easiest ride growing up, either. In summary, I missed a whole bunch of school (particularly elementary and middle school) and would feel debilitatingly ill with something simple, such as a cold or headache.

So back to the topic, starting in the very beginning of the year 2006, I kept experiencing intense headaches every, single, day. Now, I inherited the lovely feeling of migraines from my mother, but I knew these weren't migraines. I actually tried some pain killers and migraine pills in general to see if they'd help, but they just wouldn't go away no matter what I did.

Along with these headaches came INTENSE fatigue. As in, no matter how much you slept - 2 hours, 6 hours, 12 hours a night - nothing helped one bit! More hours of sleep a night, naps throughout the day, NOTHING. One thing I hate more than anything is that when people hear the term "Chronic Fatigue Syndrome" they think, "Oh, she's just tired. So am I. That doesn't seem too bad." But oh my gosh, are they wrong. My mom actually showed me an episode of "The Golden Girls" when Dorothy had Chronic Fatigue Syndrome and complained that there should be a better name, because too  many discriminate and think it's something so simple and silly.
I want to start off this journey by saying, I was fortunate. There are people that live with Chronic Fatigue Syndrome for many years. When my mom would research about it, she would find people who were living with it for 15 years strong, with no end in sight. I was so fortunate to only have lived with the torture for four months of my 18 year old life. Now, don't get confused, but CFS never completely goes away, or so I've been told. There will always be a part of it inside you that can get triggered. I've also been told that the likelihood of it coming back full force is very unlikely, which is good. But everyday is a different struggle because ever since I had the syndrome, being tired can be more overwhelming than the average person experiences, I've had trouble with insomnia, and still have significant memory trouble. I used to be tip-top with my memory... and I'm still pretty good at remembering dates and stuff. But ever since it happened, it's like a part of me just changed forever...

So onward to the timeline of events. It may have just been four months, but it felt like an endless lifetime of anguish. God Bless all of those who have it much more severe and are still suffering after years.

My mom keeps super efficient notes of important doctors appointments and such for me. Her baby book for me ended up turning into a lifetime book, and I've made fun of her for that (hehe) but it really has come in handy more than once... so thank you, mom. I referenced her notes in the process of writing this blog, so I'll refer to dates and specifics as best I can.

One thing I noticed through looking back on these notes and memories is that I suffered from a lot of sinus infections - before, during, and after CFS. Now, I don't think that has much connection... but it's odd because it all started with headaches.

So back to the beginning! I got my immunoglobulin levels tested on November 11, 2005. They came back normal. (You'll notice a pattern of tests coming back normal, leaving me with no answers) Then I noticed that the first really significant date was November 29, 2005. This was the first date that I experienced a terrible headache. Fioricet, a migraine pill, advil and tylenol (not taken all at once, of course) didn't work at all. That's not normal for me...

December 16, 2005, I started seeing a therapist for the very first time. This was a combination of my health problems and personal problems at the time. I started seeing a man for a couple visits, but ended up switching to a female therapist shortly after because I didn't feel comfortable with him.

Brace yourself for a super timeline of events!
  • Now we come to January 2006. This is when the real, endless torture seemed to begin.
  • On January 9, 2006, I had another headache, took fioricet, but then it came back shortly after going away.
  • January 10th - I went to the Emergency Room because I felt hopeless and that this headache could be doing something terrible to my brain. It was some of the worst pain I had ever felt and it really was endless.
  • January 11th - I went to my primary doctor complaining of a constant pain on the right side of my head. This led me to...
  • January 13th - I had a cat scan, or CT scan, which like I was hinting towards earlier, came back normal or negative.
  • January 16th - I tried a new pill called ultracet for the pain and was recommended to see a pediatric neurologist.
  • January 18th - I tried imitrex, which also didn't work. (As you can tell, my doctor had me try tons of different pills, but never found the answer)
  • January 20th - I finally got an answer to an endless cycle of getting nowhere. I went to my pediatric neurologist and he diagnosed me with Chronic Fatigue Syndrome. He explained everything to me and said how the symptoms matched. My parents were to contact the school and my therapist about the situation and my school work would be modified and I would start seeing a tutor who would come to my home to help me keep up with my studies. I was also to try zoloft to see if that would help with the depression and exhaustion. I was made very aware that I had to give this time, as it doesn't heal overnight.
  • January 25th - I started home tutoring.
  • February 1st - I got lab work done with the pediatric neurologist, which came back normal, as usual. He also made a point that CFS is very hard to diagnose because it doesn't show up on ANY tests. (which is why it was so hard for average doctors who are uneducated on this very important syndrome to diagnose)
  • February 7th - This was the day I started with a new, female therapist.
  • February 13th - I was switched from zoloft to amitryptylene, to help with sleep.
  • March 13th - I wasn't able to go back to school yet and was told to increase amitryptylene to 1 1/2 pills, instead of just 1.
  • March 16th - From the start of this devastating time, I had a very hard time sleeping by myself. This led me to sleeping with my mom in her bed for the four months straight from the time the symptoms started appearing. This has always been a very embarrassing thing for me to admit and not many people in my life know I had done this, but I needed the comfort. So on March 16th, my therapist wanted me to start trying my hardest to get back to my bed, even if it was for just one night. Looking back now, I feel very bad because I know this must have put quite a strain on my parent's marriage. In addition to trying to go back to my own bed, I was also told to switch taking the amitryptylene from 9pm to 7pm to try and go to sleep sooner and feel more rested in the morning for tutoring.
  • March 29th - I was still unable to get back to my bed, so my therapist recommended setting up a bed on the floor next to my mom's bed to sleep in as being a step closer to getting back to my own bed.
  • April 10th - My pediatric neurologist said that I still had to be tutored at home and was unable to return to school yet, and to increase the amitryptylene to 2 pills a night and see my therapist more often (every week now)
  • April 13th - Now came the time that my therapist wanted me to move back into my bed within the next too weeks. She said that if I needed more intense counseling that she would have to refer me to another therapist. I think that's what made me more driven to get back to my own bed because hearing that made me feel like I was borderline insane.
  • April 20th - I successfully made it to my own bed and was able to stay there every night.
  • April 27th - My therapist noted that I was sleeping in my own bed, had better energy, and was doing well overall.
  • May 4th - My therapist and pediatric neurologist thought I should be able to start school part-time soon.
  • May 9th - My parents had a meeting at the school and came to the decision that I would be going to school for 3 hours a day, with the tutor at the school in between class, starting tomorrow.
  • May 10th - This was the first day I went back to school. I'll never forget it. I was so incredibly nervous as I went up the elevator to the 7th grade floor with my mom and school counselor. Right when I walked around the corner, my friends starting swarming around me, telling everyone I was back, giving me warm hugs and welcomes, as did my teachers. In the commotion, I had almost forgot that I purposely wanted my mom to come up with me so I wouldn't be alone, and she was the one standing in the hallway alone, just watching. I turned back to see her, ran up and hugged her and told her that I loved her, in front of everybody. That's always been the relationship we've had - to this day, I'm not embarrassed to tell my mom that I love her in front of anybody, because without her, I wouldn't have gotten better. This is also a significant day because I was continuously out of school for EXACTLY four months. (January 10, 2006 - May 10, 2006) I find that fact interesting because I obviously didn't do that on purpose but it's easy to remember.
  • May 17th - This is the last really significant date. My pediatric neurologist was pleased with my progress and wanted me to return in 2 months for a follow-up. Then I was discharged. I continued to see my therapist after this time in my life for additional counseling and support.
  • May 30th - I found this date funny in my mom's "baby book" notes. Apparently, this is the date I finally got my ears pierced. The humor behind this is because I had been so scared all my life to get my ears pierced but always wanted them so bad. So in a way, it was like my own gift after such a hard time. And I still have them to this day - and now LOVE piercings! No matter how much they hurt!
THE REAL CURE: Now you may be sitting here wondering out of all those pills, what actually got me better? Well, I'll tell you one thing - none of those helped one bit. That's right, nothing the professional doctors gave me did anything to cure me. But that's where my mom comes in again. A couple months into seeing no progress, she went online and did tons of research like she always does. I think that's where I get it from, because I actually do the same now. Anyways, she ended up giving me natural supplements. This included 3 blue green algae pills 3 times a day - that's 9 pills a day. On top of that, she gave me one 2mg copper tablet, twice a day. These may sound crazy and bizarre to you, but natural supplements really are a better resource than tons of prescriptions and anti-biotics when it comes to a lot of things. To this day, I still take a vitamin c tablet and acidophilus daily. So, even though I hated taking so many pills, I took all these every day and that's when we started seeing real improvement. Of course, it still wasn't an over-night cure. It took a good couple months, at least. But that's what ended up helping me. I'd like to thank whoever's website she found that off of - because that's how your suffering, in turn helped mine. And that's what I really hope I can do for anyone who is reading this right now.

Another important thing to remember, if you're going through this in any stage of schooling: you have every right to be under a "504 plan". I have been under this plan since 7th grade and STILL have the right to be under it in college. This means that teachers have to make accommodations for you based on what your difficulties are from having such a difficult ailment. For me, I'm allowed more time on tests (if needed) and am allowed to have a flexible attendance schedule. For example, if I'm absent on a test day for illness and want to make it up, I can because I'm protected under the 504 plan. Most college students aren't allowed to make up tests if they're absent. So please, go talk to your guidance counselor, principle, assistant principle, parent, therapist, doctor, or SOMEONE who can help you with this, because it's YOUR RIGHT.

So, there you go. There's every single detail I could remember and think of that's significant to this story. But if I want you to take just one thing away from this - even if you're not someone who is suffering from Chronic Fatigue Syndrome - I want you to understand that whatever you're going through has an answer, even when it takes a really long time to figure out. To this day, I still believe everything happens for a reason. And I think this happened to me so I can help other people get through it as well since I've always had a passion for helping others. So please share this post with anyone you know who may be experiencing similar symptoms, people who you know have the disease, or people you just want to inform because you love them. Because everyone deserves an answer and a cure.

Thank you so much for taking the time out of your day to read this entire, intimate post. I hope someone, somewhere is being helped from it.

Remember to have a positive day! :)


No comments:

Post a Comment