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Sara’s Story (Chronic Fatigue Syndrome)

Sara's Story (ME)  I don’t look sick. Often, I don’t act it either. “I’m okay” or “I’m fine” are common responses of mine. It’s easier for me to block out what I can of this disease than to focus on what’s wrong with me. That’s why it’s also so hard for me to write this post describing M.E.

M.E. stands for myalgic encephalomyelitis (pronounced, ”my-Al-jik en-SEF-uh-lo-MY-uh-Ly-tis”).

This is more than just a crazy long name. It’s a title, a burden, a curse; it’s my disease. It’s a battle every day to not let this ultimately define and defeat me. This is the sickness that turned my entire world upside down.

Everyone has a struggle they are forced to deal with everyday, mine just happens to be in the form of a mysterious disease. I never forget that it could be worse. I try to forget how I used to feel and function, and I try not to obsess over the future. I’m forced to focus on now because I don’t know what’s going to happen tomorrow.

Most of what I’m going to try and explain is information I’ve easily accessed on the internet. Most of my doctors have been clueless with what to do with me or tell me. To these doctors, I’m just a case study. That has been one of the most frustrating parts of this journey. I’ve been written off, traded around, misdiagnosed and pushed aside more than any patient should be in the past few months. I’m so thankful my parents have done all the research they can to get some answers. It’s easy to blindly trust someone such as a doctor, but I’ve learned that doctors are still human. Humans still make mistakes. The only trust is in my faith and in our healing Lord. I am not only a patient, but an advocate of my own health. It’s a struggle to not become angry and bitter… I often wonder how some of these ignorant and closed-minded idiots got through medical school! But pessimism towards doctors is pointless. M.E. is just now coming to the attention of medicine. I’m hopeful that it will become more understood. Just recently NIH (National Institutes of Health) did a 2-day seminar on M.E.! This month, there will even be a day for lobbying in Washington D.C. for funding. It’s exciting to know some progress is being made! I hope to someday help develop a cure, too.

There are many names for this. The most common is Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Although, the connotation with CFS is horrible. It’s a lot more than just fatigue. It’s often compared that this illness to fatigue is like what a match is to an atomic bomb! I’ve also found that while researching online, searching “CFS” does not go into as much depth as “M.E.” information does. I’ve found that http://www.name-us.org/ has a great deal of accurate information.

It seems that this disease has an endless and changing list of symptoms and side effects.  I’m still very early in the stages of M.E. It’s very complex and there are many factors and variables that come with each patient. It affects EVERY system in the body. It’s brain damage. There is a malfunction in my DNA that welcomes the disease to take over. No one likes to feel sick, even with the basic flu. I feel sick everyday. It’s a lot more than just daily pain and discomfort. Right now, I’m dependent on a wheel-chair, while last year, I was running half marathons. When I wake up, I have to make the decision to push through this. At first, I would cry myself to sleep (if I could sleep at all), and cry myself awake every morning. I’ve come very far already to even talk about this openly, but it still scares me. I refuse to accept defeat, but I try to be realistic. I never know what’s going to happen next. I have okay days and bad days. I have good moments when I’m surrounded by those I love. This disease can potentially take everything away from me- including my life. They don’t know how you get it, or how to treat it. It will never go away. They do know it’s genetic. So, my children, if I can even have them, might get sick. Remember what I said about not obsessing over the future? That’s a tough one.

Sara
Ohio
Submitted 7-2-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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19 comments

  1. Want to hear the rest of my story? Check out my blog! http://www.whenieverfeelbetter.blogspot.com
    xoxo

  2. Sara,

    I am moved by your story and impressed by your honesty. It is my belief that when we embrace life in all its poses (the way you seem to be doing), we spare ourselves the extra heaping of suffering that comes when we resist what life has given us.

    Even before my wife was diagnosed with ovarian cancer, we had a note attached to our refrigerator that reads: Every Day Above Gound Is A Good Day. Even if today isn’t a good day for you, maybe it will be an “okay day”. Thank you for sharing your story. You are in my thoughts.

    John

    • John,
      Thank you for the encouragement. I love that saying… it’s so true.
      I will keep your wife and you in my thoughts and prayers. I’m sure your support means everything in the world for her!
      And today, was a pretty good day! 🙂 I appreciate them when they come!
      Sara

  3. There are, actually, hundreds of treatments for CFS/ME, including dozens of ones with good evidence of benefit. Many treatments (immunomodulators and antimicrobials) can treat the actual illness process, not just the symptoms. Some can occasionally even be curative (but sadly they’re too expensive for most people to afford). I used to have progressive CFS/ME, now thanks to proper treatment I’m about 80% better than at my worst, even though I only started getting treatment almost seven years after getting sick.

    And please don’t believe “it will never go away”. Even if current treatment can’t cure you, all illnesses will be cured in some 20 years. Yes, CFS/ME can kill you, but most likely it won’t, so chances are very good you will be able to enjoy full health again in the future.

    The genetic predisposition isn’t very strong, so it’s unlikely your kids would get CFS/ME (they might contract it from you, but many parents with CFS/ME have healthy kids). Of course, managing pregnancy/kids while ill is a whole another issue, but still.

    Like all major losses in life (e.g. break-ups, death of loved ones), chronic illness does get easier with time. Sadly, it can take quite a while (as in, years), but time does help in dealing with it.

    • Wow! I haven’t looked into any immunomodulators or antimicrobials. Although, since this post, I’ve started some anti-virals that seem to suppress a lot of the flu-like symptoms. I’m glad to hear they’ve helped you improve!
      I am also hopeful that medicine will be able to overcome and cure these illnesses, and also prevent them from infecting our children, too.
      It’s been a hard thing to except, but since this post I’ve been managing better.
      Thank for you responding to this!

  4. Hi Sara,
    It is a very hard diagnosis to live with. My daughter has been ill since she was 13 and is now 20. Unfortunately, she is still very ill. We’ve had quite a ride with doctors, some good, a lot not so good. We’re still hopeful that something is going to help. We’re in Australia, so don’t have access to some of the treatments that you have in the US. We have a good doctor at present … hopefully the treatment he has put her on will help over time.
    One very important thing: DO NOT PUSH YOURSELF. The absolute best prognosis for people is to rest, rest, rest, rest ….. (you get the picture) in the early stages in particular. Know your limits.
    One good site to look at is http://www.ahummingbirdsguide.com/ The woman who has set up and run this site for the past several years is a severe ME sufferer. She has also just written a book. Very worthwhile.
    Take care and allow yourself to feel angry and to grieve … but, as you say so well in your blog … this illness is not who you are, just a part of your life at present.
    Another really good resource is a book called “How To Be Sick” by Toni Bernhard.
    Wishing you all the very best! 🙂

    • Hello in Australia!
      I’m very sorry to hear that your daughter is also sick. I’m sure you’ve helped her tremendously.
      It’s interesting to me that you long for some treatments here in the US, because we’ve done the same about the UK and Australia! I’m hopeful that there might someday be some sort of universal treatment for this.
      Knowing my limits is hard, and I’m sure with your young daughter, you’ve experienced the same resentment for resting… Thank you for the encouragement.
      Love the website so far! I’ll look some more into it. Also, just checked out the book!
      Thanks again! Keeping your daughter in my thoughts and prayers!

  5. Being ill isn’t easy, is it? While I am not quite as ill as you appear to be (as in, I’m not in a wheelchair though I do need a cane on occasion), I have been ill with ME for 8 years, and very ill for these past 2 1/2. It has certainly been a learning experience for me!

    I do think that there is hope for the future though. Even though life is much more difficult, it is still possible to have a life. I have a wonderful boyfriend (who also has ME), a great support network in my family, and am starting to be able to manage a bit of online work.

    There are also new treatments and medications being developed for diseases and illnesses all the time. Some of these work, others do not, but I think it is important to maintain hope for the future, while accepting the limitations of the present.

    I do wish you all the best. Good luck in your journey!

    • Ah… if being ill was easy, everyone would be sick, right? i’m sorry to hear it’s gotten more severe for you, but I’m sure you are strong willed as ever.
      Since the post, I’ve been able to get medication for my legs and depend less on a wheel-chair. It’s been hard adjusting, but I’m even more thankful for my legs!
      Hope is very important with any struggle, and so is a support system.
      Thank you for the kind wishes! Stay strong 🙂

  6. Go see Dr. Klimas in Miami. I am bring treated by her partner Dr. Rey. She is the leading researcher in the US on this illness and they do understand how it is contracted. They started me in a protocol in April and their patients are showing improvement. I can completely relate to your blog and lived in denial until I could no longer stand. I too look healthy and this makes it hard for others to understand. We can and will get better. I was diagnosed in 2009 and my 14 year old daughter was just diagnosed this summer. It sucks but we will find relief.

    • My parents are trying to make contact with Dr. Kilmas now! Thank you for the suggestion! I’m glad you’ve been improving. I will keep you and your daughter in your thoughts and prayers!

  7. Sarah,
    I had no idea you were this sick. I feel awful for you and my heart aches for you. Push through everyday and enjoy the good days you have with family and friends. I am praying for a cure!
    Love,
    Samantha Spencer

    • Samantha!
      Please don’t feel awful; everyone has something they have to persevere through. I am fighting this and I am learning to manage much better!
      I truly believe the prayers make a difference.
      Thank you for reading this!
      It’s been amazing the feedback I’ve gotten from school!
      Love you!

  8. I didn’t know it was genetic. I don’t remember seeing that in any of my research. If that’s true, I must be adopted. I’m the baby of six children and none of my siblings, children, their children or any of our grandchildren have it. My parents didn’t have it. Just me. I’m 58 years old. Hmmmm.

    • I’ve heard that’s it’s more of a pre-disposition to getting the illness. It’s common for families to all fill ill with ME… possibly because of their similar gene pool!
      And I’m sorry to hear you were the “lucky” one in the family! :/ Hope you’re feeling well these days!

  9. I just saw your blog! My Mom was just recently diagnosed with ME and I have Celiac Disease. My friend Jenny has POTS. I can’t imagine having to deal with all of them! You are so strong, and your drive is inspiring. I will be sharing your story with my Mom who, after been misdiagnosed SEVERAL times and dealing with Ventricular Tachycardia, seems to be giving up hope. Keep fighting, and please update me on treatment information/ ways to combat the depression so I can help her out!

    • Coral,

      Thank you so much for reading! I’m sure you make an incredible, positive difference in your mom’s and in your friend’s life. I can truly say that my best friends have helped me with my depression more than any medication or treatment could! Having great support is the best army you could ask for in this struggle.

      You can read my blog for treatments I’ve found to be beneficial at

      http://www.whenieverfeelbetter.blogspot.com

      Also, feel free to contact me with any questions you have!

      I know you’re making a difference for them, and helping to fight their battles!

  10. Sara!
    I remember when on my birthday in middle school how we all thought it was so cool to get our lockers covered in like wrapping paper and cards and silly stuff, then for my birthday i saw noone had put anything but when i opened my locker, there was one card that had been slipped into it. It was from you… you were my best friend and gave me five dollars haha, i still hang onto that card sara cause you were always there when i needed you. So just sayin, Im here if you need me girly. Any hour of the day or night.
    Much Love and Luck to my whiterock!

  11. Sara, your story is so inspirong , I’m 15 and have had ME for 10 months and it has been hell! I haven’t been to school all year and am in my GCSE year but I’m just to tired to go in. The last 3 weeks have been the worse I have constant sickness and that keeps me awake I don’t get to sleep till 6-7 am (if I’m lucky!) Or don’t sleep at all. Its stressful for me and my family especially my mum as she wants to help but there’s nothing she can do. I am currently going through Physio I have had 2 sessions and have another ts month and am starting to see a psychologist for my depression. I have read depression is normal bcuz of the stress of it all I was like you before I could do my paper round, go swimming then town but now I can only do half my paper round on a good day! But the thing that births the most is that basically everyone at school thinks I’m skiving as I don’t look and they see me out bcuz my doctors tell me I shouldn’t isolate myself I wish they’d believe me. I am just so fed up of everything at e minute I’m fed up of no answers! I hope you are okay xxxxx

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