article I wrote about CFIDS

Discussion in 'Fibromyalgia Main Forum' started by jeunefille, Nov 25, 2005.

  1. jeunefille

    jeunefille New Member

    Hey gang! I know I haven't really been that active, but I was thinking of writing this article and sending it to a women's magazine or something of that nature. What do you guys think? Here it is, let me know if you like it! :)

    Fatigue. Most people use this word and very few people understand clearly what it means. Now and again, everyone becomes overworked and overstressed, especially college students, which leads to exhaustion. For most people exhaustion and mild fatigue are easily handled. After finals, a couple days of recuperation will allow most people to be back on their feet and have a normal energy capacity. But its different for me and the millions of other people of all ages who suffer from a debilitating disorder known as Chronic Fatigue and Immune Dysfunction Syndrome.
    I first started to notice that something might be awry in my health in November of 2004. I had always gotten sick quite easily, but I was usually able to handle the normal stressors of a college student. That summer I had nannied three children, ages 3, 9 and 11 in addition to participating in a theater summer stock program that took up the bulk of my evenings from 7 until sometimes 3 AM. I was always able to keep up. That fall I transferred to a great liberal arts school in southern California and I adjusted quite easily and nicely. I was taking the normal 15 credits and joined a sorority. I had a great boyfriend whom I had left back home in the San Jose/San Francisco Area, but continued to keep up a blissful relationship with. Things were pretty fantastic until November came.
    I spent Thanksgiving holidays with my family in Princeton, NJ, 3,000 miles away from home. I love the east coast, especially New York City, and I suddenly found it odd that I didn’t even possess the desire to ride the train into the city, even with the looming promise of NYC shopping and Broadway shows. I forced myself on the train three times that week, but skipped out on a trip to Philadelphia as I just couldn’t get out of bed that morning. My boyfriend talked to me on the phone most every night while I was there and encouraged me to go into the cities. While his efforts were much appreciated, I began to feel like maybe I was just lazy or depressed.
    Two and a half weeks later was our six week Christmas break. I slept for a good week, or so it felt like, but I expected my condition to improve. I had been extremely stressed during finals, so I figured I was just sleeping off all of the excess stress and would arise feeling fine. Weeks went by. I would go to my boyfriend’s house to hang out with him, just to end up falling asleep on his bed. When he would come over to be with me, the same scene would play out and I was usually too tired to do much of anything. I saw my friends at home, but rarely and spent most days doing extremely low-key activities and taking two to three naps a day. My boyfriend expressed concern and so did many other people, wondering if I was depressed. I didn’t feel depressed as the life between naps seemed fine to me, but others around me were convinced there was something wrong with me and it was something I could control by a change in attitude. My boyfriend nagged me about becoming more active over break, so I started to try to help my mom baby-sit a pair of toddler twins and their four-year-old sister. But I always fell short, as the task of looking after the gang always seemed overwhelming.
    For a while I stayed in the mentality that once school started, I would be okay and things would be back to normal. I’d have sorority and 15 more credits to keep me busy. But I was wrong. A huge blow came when my boyfriend found he couldn’t take anymore of my grogginess and left me very unexpectedly. I knew he was annoyed by it because of his constant hints, but I never knew it was to this extent. Needless to say I was devastated. I spent that entire night after the news on the bathroom floor throwing up. I figured I was just upset, but once my mother realized I had started to run a fever and was continuing to throw up the day afterwards, she took me to the hospital.
    This would be the first of my kidney infections that still haunt me today. With CFIDS your immune system is weakened and for whatever reason, mine has chosen to constantly attack my kidneys. If I don’t take care of myself, I can find myself quite typically spending the night in the hospital with an IV in my arm dripping antibiotics for a few hours.
    I was diagnosed with a kidney infection, but something was rather curious about it. It wasn’t going away with antibiotics. The doctor switched the medicine several times, but it seemed that this infection was resilient to any drugs they could give me. However, it finally appeared to be under control by the end of the week and I was sent on my way back to school to begin the Spring Semester.
    Things only got worse. I thought going to school would alleviate some of the pain I felt from my first heartbreak, but everything only seemed to be magnified. I spent a lot of time in tears and even more time over the toilet vomiting. I had difficulty making it to class and I was always running a fever. Most days, I preferred to stay tucked in my bed in my dorm room.
    The semester previously, I had been elected to my sorority’s Executive Board, a very high honor for a newly initiated member. However, as the spring semester wore on, I found I had the drive for this position, but I could not physically execute it. The weekend the Executive Board was to go out of town for a convention, I was running a high fever. I spent that weekend mostly in bed and was quite “in trouble” with the sorority the week afterward for failing to attend this mandatory event. Sadly, I decided to resign my position as I felt I could not be relied on at all with the way things were. Luckily the president of my chapter proved to be extremely supportive in any decision I made.
    As the semester progressed, things were not getting better. I was having a difficult time moving past my new ex-boyfriend because I could not get involved with other things to keep my mind off of the situation. My health was so bad that all I could mostly do was sit there and think about him with his new girlfriend. I tried to date, but I had little energy to sustain anything.
    My family and friends grew increasingly tired of my low energy, feeling as though I was merely depressed over being dumped. I kept being told to get up and go to class because this wasn’t the end of the world and he was just one guy, etc. I tried to take their advice, thinking that’s what this was too, but my energy was so depleted that sometimes even walking to the bathroom would result in a high fever and me having to rush back into bed.
    I hit rock bottom emotionally when I confessed to my mother I had not made it to class that morning and had to cancel a dentist appointment because my energy had been so depleted. Not only had I gotten yelled at by the dental assistant for canceling, but my mother told me it was time to get serious about life and stop saying that I was sick when I was just depressed over some stupid boy. She kept telling me how I was unable to handle emotional situations, etc. and that I should pick myself up and keep going because I was wasting money by laying in bed.
    If I had ever been close to suicide, it was definitely that night. I felt completely alone and abandoned, and I just wanted someone, anyone, to understand that I was sick. It went beyond this heartache, and I knew it was something physical, but no one seemed to believe me. Even being hospitalized twice that semester for kidney malfunction didn’t seem to support my cause to anyone. I wrote out a suicide note and grabbed a bottle of pills while my roommate was at a play. I stared at the pills for a long time, but I realized I just couldn’t do it. I crumpled up the note and fell asleep.
    The true wake-up call came for my family when I was hospitalized yet again. The doctor discharged me with a bottle of antibiotics to keep this new infection at bay. When I woke up the next day, everything was fuzzy and hazy. I called my mom and could not formulate a sentence. I tried to communicate to her what was wrong with me, but it all came out a jumble of words that didn’t make sense. Alarmed, she was on the next plane from San Jose to come collect me.
    I barely made it on the plane three hours later and I practically had to be carried on and off. I remember not being able to sit up straight and being near tears as the thought of driving all the way home from the airport seemed too much for me. I was taken to the doctor the next day and was told I had Chronic Fatigue and Immune Dysfunction Syndrome. In the same breath, I was told there was no cure. I was relived that someone finally saw there was something wrong with me, but frustrated that even though there was a name, there was nothing I could do about it.
    I had to drop out of school for the rest of that semester to attend to my health. And it got worse. I had an infection so bad at one point, all I did was lay in front of the toilet vomiting. My fever peaked at 103. I was in bad shape, to say the least. IVs and being put in and out of machines that once seemed daunting were now old hat to me. But I think my friends at school, well many of them anyway, thought and still think I left because I was too depressed over being dumped to deal with my schoolwork.
    Much of the next two months was spent in and out of a sick haze. There were days when I felt well enough to accompany my mom to the grocery store or go to the mall, but most days I slept. Sometimes I’d even sleep for 24 hours straight, only waking up to use the restroom and sometimes get in a snack. My appetite had decreased to nothing at that point.
    Finally, my doctor was able to get my kidney infections under control and I began to see marked improvement in my health. I was put on chronic antibiotics and things seemed to turn around. I was able to fly back to school for the weekend to be with my friends for my twenty-first birthday and attend my sorority’s spring formal. I was too energy depleted to stay for the full dance and left my date to schmooze with our other friends, but I was happy I was able to even go.
    When summer rolled around, I made the decision to go back to my university and enroll in some summer courses. I lived by myself and expected things to be lonely, which surprisingly, they weren’t. It was total freedom, as if I was able to go on a 3 month Zen retreat on a mountaintop. I made As in both of my classes and I journaled a lot about how I was feeling physically and mentally. My health was still in limbo with occasional trips to the doctor and lots of sleeping, but things were beginning to turn around. Through a special relationship with a close friend I’d known for years, I began to see what I really wanted out of life and where I was going. It was awesome to answer only to myself and have total freedom to do what I wanted to do. I started singing lessons again and refocused old habits and learned that you can really do anything if you set your mind to it. So I set my mind on finding out who I really was and where I was going. I scratched my plans of going to law school and made a new plan. I changed my major; I was over my ex-boyfriend and started to fall for someone else. Things were looking up, although I still had days where I would sleep for the bulk of them. Luckily my academic teachers that summer were incredibly understanding.
    When fall rolled around, I was excited and nervous. I had had a relationship with someone new over the course of this time, however things didn’t quite work out between us and it wasn’t a big deal to me. But my ex-boyfriend (who had previously left me that February) had decided to continue his education at my small university. Everyone became obsessed with it and wondered how we would react to each other, as if we were a freak show act. That weighed heavily on me, as I didn’t want us to be known in conjunction with each other any longer. We were our own people apart from each other and I hoped people would see that.
    Apart from that, things were very stressful. I had 15 credits to take, singing lessons to go to and a sorority full of girls who expected me to be able to perform at a level I was at before the semester before I fell ill. The real world wasn’t normal to me anymore. I had made a world all of my own and I wasn’t used to having to deal with schedules and people who didn’t understand that CFIDS was a real disease. During our sorority recruitment, I can’t count how many times I was told, “I’m tired too!” when I would asked to be excused from an event. However the stress and expectations would cause me to run a fever nearly every night and I was left collapsing in tears. I guess it didn’t occur to me that people wouldn’t understand.
    The first couple of months back were brutal. I spent time wondering if I could hack it at school. I talked to people in CFIDS support groups who told me to go home and that I didn’t need this pressure. I was told to disaffiliate from my sorority or find a school closer to my parents.
    Many of my peers noticed I was depressed and that things weren’t how they were supposed to be. So I decided to educate people about what was going on. I sent out a letter to my sorority explaining what I had and how I wasn’t just trying to skip out on things; that I had a real problem.
    The letter was met with a few girls taking it as a personal criticism for their earlier attitudes toward the disease. Some girls told me if I went to therapy to deal with my ex being at school with me and getting over his rejection, maybe my disease would be cured. I felt like I was at a dead end by that time and gave up hope that anyone would understand. I was hypersensitive to everyone’s moods and now afraid that everyone I had been close to hated me because of the disease.
    I was subsequently called into my sorority’s judicial board. I couldn’t think of anything I did wrong, so I was about to disaffiliate right then and there. I didn’t want to be in “trouble” one more time for something I couldn’t control. But to my surprise, it wasn’t about that. The girls had read my letter and were genuinely interested and concerned and wanted to put a lecture on for the chapter to educate people about this problem. I was stunned and excited and they let me know that while a few people may have a bad taste in their mouth over me and not understand the disease, it’s not everyone. Most people were worried when I wasn’t there and wanted to know what they could do for me. People don’t know, people just need to be educated.
    Things began to turn around after that. I thought about the advice the people in the CFIDS support group gave me and I began to wonder if I accepted my limitations, but also lived in a bit of denial, if I could make this thing work. And that’s just what I did.
    Now, I’m able to go to school full time, be a part-time member of the sorority and still attend my music lessons. This is a huge feat for me and much bigger than many people with CFIDS can do. Some people with this problem can barely make it out of bed without having to nap. Of course, I have to take it easier than most people. I can’t do a lot of cardio exercise and have to be waived of my PE requirements. Some days are worse than others and most days I wake up feeling nauseated. I often am too tired to attend parties and have to sleep a lot during the day. But I just keep plugging away.
    I am two semesters away from graduating now and things are moving along quite nicely. I recently wrote a play and have been involved in all of the same activities and a few more than I had been previous to the disease. I plan to study in Paris this summer as I am now a French major, and have the French word for “kidneys” etched in my brain. I scratched law school to attend theater school in New York City. I am hoping after I earn my MA in theater, I will be able to move somewhere where I can begin a theater company as well as social outreach programs that promote theater for social change (more specifically, raise awareness of human rights issues through art).
    I often worry about when I get a “real job” how I’m going to sustain it. I’m not worried about school as teachers are usually pretty understanding, but the “real job” problem terrifies me. Although I’m nowhere near mature enough for this, I often worry about finding a suitable mate who will put up with this problem and wonder if I will be too exhausted to care for children. But I think if my success so far is any indication, things will only get better. I write this article not so people will feel sorry for me, but so people will begin to understand what is wrong with me and the millions of others who have to suffer from this illness.
    Nowadays, I have come to an understanding about people who have not understood the illness, and I still feel that I am on good terms with most of the people I’ve had problems with about it, as I was able to later explain it. At the time, no one knew I was sick and I can see how my behavior could be misinterpreted for laziness or depression or ambivalence. But the lesson I learned here is that I have to educate people. When I meet a new friend or someone I foresee myself being close to, I always let them know about my CFIDS. Sometimes it’s too much for people to handle, and I don’t fault them for that. It is pretty taxing to be a parent, friend or partner of someone with this problem. The cancelled plans and low energy would be pretty annoying, so its imperative that people understand that I am not just apathetic or lazy. I look at it this way: If I don’t explain it to them, how will they know? It’s like asking someone to solve a calculus problem without teaching someone how to do it first. It’s impossible. I think I got frustrated a lot in the beginning because I failed to realize that people needed to be taught how to understand it and I expected them to just do it. Now I know throughout my life, I will be teaching people about what is wrong with me.
    When people hear CFIDS, most people think of just being a little bit tired, but the feeling of fatigue is overwhelming. On really bad days, it’s like mono. My armpits often swell up and I get fevers frequently too, a side of the disease that is often ignored. It also compromises your immune system significantly, making it near impossible to ward of diseases.
    As of now there is no cure for it, but doctors have found that a viral infection causes the disease. The disease is not caused by major life traumas, however stress can exacerbate the disease and make it come out of the wood work or make a case that has been under control become out of control. People with this disease are not depressed, although sometimes they may become depressed as a result. Some people recover, some don’t. Some people can function and go to school and have full-time jobs with it, while some may be able to only do tasks part time and some not at all. I’m lucky that I can still be a productive member of society.
    If you think you may have CFIDS, please consult your physician. If you are interested in learning more about the disease, how to help a loved one with the disease cope, how to cope if you are a friend or family member of someone with the disease or how you can help raise awareness/donate to the cause, please visit CFIDS.org.
  2. Sandyz

    Sandyz New Member

    Yes, its great!! Good job, it would be so awesome if you could get it published somewhere. This is a difficult road we are on with these illesses, you really did an amazing thing getting through college. I wish you the best of luck with your future career.

    Sandy
  3. alaska3355

    alaska3355 New Member

    That is a great article! Even though I'm just a mom of a CFIDs 18 yr. old son, I can relate to your problems. My son came down at about the same time as you, and has had major concentration problems. He was unable to start college this fall, and I'm hoping he might be able to try again in Jan. (Lord willing).
    It's been a long, expensive road and frustrating when you just want him to be better (you too). Anyway, I hope you do submit it to a magazine...I think it will educate a lot of people.
    Terri
  4. jeunefille

    jeunefille New Member

    i hope your son gets to college soon. With a good supportive school, I'm sure he can be successful.

    I'm trying to figure out which magazine to write to...
  5. sues1

    sues1 New Member

    Your story is compelling.........I was spell bound while reading it.

    You not only put in the facts of CFIDS, but your own story with much heart and soul. You covered all well.

    It deserves to be in print in a magazine. Good Housekeeping used to accept articles like this. I love their magazine but no longer subscribe because of the perfume samples. They made me ill. I asked if they could send me issues without the samples, and they insured me that they could. But every so often the samples came in the magazine, I would get immediate headaches and nausea and could hardly see. So I miss the magazine but I can not be made ill.

    Readers Digest prints articles. So does other magazines, but my mind is not functioning right now......LOL.
    Just check around and see which ones to send to.

    GREAT STORY in ALL WAYS......please submit for print.
    Resubmit if necessary.

    You are an inspiration!

    (((((((( Thanks........Blessings))))))))))
  6. jeunefille

    jeunefille New Member

    I kind of worry it paints my ex in a bad light though. We're on weird terms right now, but I don't want to screw it up and make him feel worse, I only included him to illustrate how people misunderstand symptoms and how easily this disease is misunderstood!

    If you were him would you be offended and weirded out?
  7. alaska3355

    alaska3355 New Member

    I love your handle...I used to take French. Anyway, how many women's magazines does your ex read? Not many, I'm guessing. But even if he does read it, you've only told the truth about how your relationship ended. I wouldn't worry too much about him.

    Also, prepare to send your story to a lot of places. You'll likely get some rejections, but don't give up. You have a good article.

    Terri
  8. Rosiebud

    Rosiebud New Member

    it took me back to when my daughter became ill at 15 - I already told you she has finished uni, done a social work post grad, got married and starts work in January. She gets the high fevers too. So dont you worry so much about your future, take it as it comes, do what you can.

    I'm so glad that your sorrority sisters are supporting you. As for your boyfriend, no, I dont think you made him out to be weird at all.

    I lived in Lille, France for a year, my daughter is half French and bi-lingual she's spent a month there every year since she was a baby. Not now, now she goes over to see her grandparents whenever she can. We're not far away of course. You will love it there.

    I hope you manage to get your article published, it's well written, descriptive and give a good account of our illness.

    love
    Rosie

  9. jeunefille

    jeunefille New Member

    glad you people like it.

    I'm thinking of asking my ex to read it and ask him if everything mentioned about him is okay before I publish it....our relationship is in this very bizarre place and I don't want to go into it, but I don't want to make him feel bad.

    If anyone wants me to repost this with the spaces I can. When I went from word to this, the spaces didn't translate! I'm sorry!
  10. Eric_79

    Eric_79 New Member

    Jeunefille,

    Great article, it remindes me of what i went through a few years back. I've had cfids for about 5 years (im 25), I have my good days and bad. I have found the best medicine to be a great diet, vitamins, rest and laughter.lol I know a super good cfs doc in Huntington Beach. I am not sure where you are in southern CA, but I would love for you to see her, she will do all kinds of special bloodwork on you and may find some things you were not aware of. Some of it is unfortunately not covered,most is, but it is worth it to find out what might be causing your symptoms. I also know a really good infectious disease doc in Tourance (LA), he is on the forefront of CFS and is actually working with drug companies to develope new antiviral meds against this disease. (under the theory of chronic infection as the cause) Anyone who reads this and needs more info about the docs, etc. email me at [email address removed]

    Eric
  11. jeunefille

    jeunefille New Member

    I e-mailed you back. I am right here in Orange County, so that's perfect. I look forward to the e-mail.