Introduction and request for help.

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the_lorelei
New Member


Date Joined Apr 2004
Total Posts : 1
   Posted 4/10/2004 8:39 PM (GMT -7)   
Hello, my name is Dawn.  I'm doing an essay on Chronic Fatigue Syndrome and I need to have an interview included.  I hate asking people who don't even know me to help me out with this, but I don't know what else to do.  I'd been thinking of interviewing myself but I doubt that the instructer would like that.  If anyone decides to help me they don't need to give me any names or locations.  I respect people's need for privacy.  The information that I'd need is just experiences with the illness.  Diagnosis, coping, that sort of thing.  If you'd like to help please email me at thelorelei1980@yahoo.com  I do appreciate it.  I'm sorry if I've violated any privacy rules asking for this assistance.  If I have, please don't hesitate to delete my post. 

I would not ask for anyone to share their experiences with me without returning the favor so here are my experiences.
 
I was tentatively diagnosed with CFS in 1999 when I was having problems at school but was only told that it would make me more tired than normal.  Very big understatement.  Years later, I started to have more problems.  This time at work.  I nearly lost my job.  I was tired all of the time, depressed that I couldn't get anything done, and I felt so very weak.  I was sick often.  Filing was a painful experience for me.  Bending over the drawers for long periods of time could reduce me to tears.  My back ached, my knees aches, I felt faint, but I did it. 
 
I decided to do a little research into the Chronic Fatigue Syndrome.  What I found shocked me.  I couldn't believe that my previous doctor hadn't given me more information.  I was reading stories of other people experiences and remarking, "Hey, that's me!  I know what you're talking about"  I really had thought that I was just lazy or just didn't want to deal with work.  I have problems concentrating and my memory is horrible.  Now I know why.  It isn't my fault.  That's a relief.
 
Sooo after researching, I talked to my new doctor about it.  He tried to tell me that CFS doesn't really exist.  He was a VERY new doctor.  He also didn't want to give me tests for anything.  I have no idea why.  It's not like he was the one taking my blood or paying the bill.  So needless to say, I started to shop around for another doctor.
 
I found one that specialized in this sort of thing.  When I went to see her, she talked to me for a bit, examined, and then took more tests than I've ever had in my entire life.  So by a series of eliminations she declared that I had CFS.
 
I thought that now that I had a specific name for my problems, things would be easier.  WRONG!  Not only do coworkers not believe in it, but my own FAMILY thinks that I'm just a lazy person looking for excuses.  I'm working my butt off trying to do what a person needs to do to get by and, when I have periods of extreme fatigue, I'm met with derision from the people who should be supportive.  I'm not mad at them.  I understand why they don't understand me.  People need proof.  They need blood tests and x-rays.  If someone seems fine one day, and sleeps until 3 the next, people are skeptical. 
 
So now I'm in college, working towards a degree in Graphic Design and I'm near tears every other day.  A two page essay that is no problem for some of the other students is hell for me (this post is now 2 hours in the making).  I'm either too tired to get to my computer or if I do manage to get there it takes me hours to type one paragraph.  I miss early classes because I'm either sleeping or sick.  I'm afraid to tell my instructers what the problem is because I'm afraid of seeing the derision and disbelief in their eyes as I've seen in the eyes of people that I love.
 
I decided to do my research essay on this topic because I want people to understand.  If my instructer knows nothing of CFS, I want to TEACH her.  I am NOT a lazy unmotivated jerk.  The fact that I'm forcing myself to go back to school after 4 years should prove that. 
 
Even if I'm incapable of affecting my instructer on this issue, the whole research paper is good for me.  I'm finding more information than I've ever found before.  I'm reading about other people's experiences which makes me feel less alone than I did before. 
 
Even if I can't find someone to interview from this post, it's been a great therapy session talking about my experiences.  I can't talk to the people close to me because they just don't understand.  They accuse me of complaining too much.  Perhaps I do, but I can't go through life with a smile on my face pretending that I'm okay.  I'm not okay.  I'm scared.  There is no one who understands what I'm going through in my life.  I feel so alone sometimes.  I'm glad that there's a message board like this. 

Thank you for listening to my entirely too long rant.  I didn't mean to make it as long as all of that.  I just couldn't seem to stop once i had begun and it all came pouring out.  I hope that you understand. 

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 4/15/2004 11:17 PM (GMT -7)   
Yes, lorelei, we understand very well. You are "at home" here, and can talk about whatever you need, to feel supported.

I don't know if you'll get any volunteers to be interveiwed or not. But I have another idea that might be a little more effective. Have you ever looked into attending a support group in the area where you live? The kind that you go to in person, and talk to people in person. Not only might that be an avenue for your own personal support and evolution, you'll probably find at least one person who is willing to be interviewed. I can understand the attraction of the internet, as a time and energy-saving tool, though, and goodness knows we need to save as much as possible (of both). So it's just an idea. If you want or need help finding a support group in your area, I can probably refer you to a few websites with this kind of info. If so, just let me know.

I can very much relate to your desire to educate others about this illness. I think you will find, if you haven't already, once you get into the serious literature, that you are not alone in this. I've practically made it a way of life, personally. Not that I go out LOOKING for opportunities to educate others (MUCH!), but I do take every opportunity that presents itself. Unfortunately I wouldn't have the time to do a whole interview, right now. When I was first diagnosed, though, I had a friend in nursing school, who had to do a paper on any illness of her choice. She chose CFS and interviewed me at length, so I feel like I've "paid my dues"!

Best of luck in completing the interview, the paper, and the course, as well as in graduating. We'll be here to offer support, if you feel the need. Take good care.
brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/18/2004 10:37 PM (GMT -7)   
Boy, Dawn, do I ever sympathise ! If I hadn't had other people around me falling ill with CFS/ME, my family would never have paid any attention to me.
At work I was famous for my willingness to work in all conditions, at home I was considered lazy because I kept leaving jobs because I felt tired..."We all get tired, but we just get on with it" etc etc.
The good news is, generally people who don't know you will be more sympathetic - particularly teachers. Either they have met someone else with similar problems, or when you tell them the details they actually believe you. In my experience, family are the worst, with doctors a close second and sometimes far ahead.
I'll email you - being unemployed, I have lots of time to compose short pithy answers...

mscarrot
New Member


Date Joined Oct 2004
Total Posts : 15
   Posted 10/23/2004 3:42 PM (GMT -7)   
Hi Dawn,

o, my gosh I do understand your feelings, guess when you have this stupid disease you have to fight twice the battle (make that triple......pppffuhhh) just for understanding...... I found out that i have a attitude right now, if people know me, they also know that i'm not faking, if there are others who don't believe, well just don't believe it.

It might seem a harsh attitude but the only one who really knows is yourself (and hopefully your boy/girl friend or husband/wife. I am very glad mine is very understanding, I also had experiances with former boyfriends who didnt. well that didnt worked out well........Now I can laugh about it but back then it drove me to tears quite often.
Ofcourse i want to participate in your essay, but i have to tell you I'm Dutch so I might make some mistakes writing and so, but if you have questions just ask.

You can reach me by clicking the link below, you will be transferred to my website, under the button contact you can find my e-mail (don't worry they are all mine).

I will also check this topic so you can post a message here also, if you can't reach me.

Keep your head up girl, behind the clouds there should be a ray of sunshine (sometimes hard to imagine, but it really is true !!!!)

Big hug,

Paula
----------------------------------------------------
My website :
 
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