New with CFS & EBV

Hi all,  I don't even know where to begin.  I was just happy to find somewhere that I don't get demeaned or insulted for being so tired.  Tired doesn't even cover it.  I was diagnosed with EBV in Sept.  My levels were around 3500, 2500 & 250.  I was among that lucky 1% that also has their nervous system attacked.  My physician put me on Valtrex (experimental & being researched at Miami or Florida State U) because EBV is in the herpes family and Strovite, a high dose vitamin.  I did well and recovered much quicker than he thought especially considering the levels.  At my appointment saturday he said that many with levels lower than mine have taken a year or two to recover.  I was in college when I was at my worst, had to withdraw and had a very difficult time getting back into school.  The nursing dept was wonderful and had everything set up for my re-entrance but the admissions office....I dislike the people there...let's just leave it there.

Currently I am paying for going back to school and I am exhausted, the shaking has started again and my brain will just shut off on me.  I am a nursing major and they have been wonderful but the financial aide office and pheaa and fafsa have made it clear that if I don't complete 24 credits I will NOT receive any funding again.  I am doing 18 cr (35 class hours) on campus, just finished one on-line course and have one more to do.  I have started to relapse due to the stress and exposure to a common cold.  I have hit that angry phase.  I had to send my kids to stay with their dads because I can NOT do it on my own with my class schedule(I have 3 13 hr days), money is beyond the point that it sucks and my soon to be ex boyfriend just thinks I am "faking."  He's in Japan and didn't see what this virus did to me.  He wants that confident, joking, happy girlfriend back and I don't have time for that.  I love him, I do but what am I to do from here.  My overall virus happy days I don't remember much of.  I don't remember from around 9/13 to sometime in the middle of Oct.  I lost a total of 50 lbs, my body still shakes, I am tired, I couldn't speak, I had no emotional control and still just break into tears for no reason, I can't drink enough fluids, my head will still go blank and into a fog.  I am doing okay in classes so far but 1/3 of last semesters class failed out while taking 12 credits and not fighting this fatigue and virus.  I have to fear someone with a common cold because that is part of what made me backslide this week.  How am I to avoid a virus in a hospital???

I guess I'm just looking for someone that has been there.  I have absolutely amazing friends that have been supportive.  It has actually be my family that thinks I'm "playing it."  They don't live near by and when I seen them at Christmas the biggest words of encouragement I got was "you need to gain some weight."  Ha...my ex husband has been more supportive.  I am just tired and depressed and I feel useless.  I hate being the reason my kids cry and I miss them so much.  I also do inhome care with the elderly and I miss being able to go do extra for them, like taking them out to eat because they don't get out of the house or taking them to the grocery store, instead of their children doing it for them, so they can feel more independent.  I guess...I miss being me....

Angie

Welcome Angie, I am sorry you have been so fatigued and sorry about the way your illness has affected your life.  It's so hard for healthy people to understand what we mean when we say we are tired.  Like you said, tired doesn't begin to describe it - it is in no way the tired that healthy people think of.  There is a great website called butyoudontlooksick.com .  There are some great resources there and also something called The Spoon Theory.  It was written by a woman who has lupus but it can apply to any chronic illness and she does a great job explaining to healthy people what it is like to live everyday with a debilitating disease.  It might help to let your boyfriend and family read it. You seem to be taking aon a lot with your classes, but I know you need the funding - I give you so much credit for trying to carry such a load when you are not feeling well.  I know it's easier said than done, but please try to take care of yourself as best you can through this. You are among people who truly understand and know how hard it can be to function many days.  I hope you continue to post here - it's a great place for support. Take care and I'm glad you joined.

bee, I feel VERY trapped. When I withdrew the school did NOT tell me any of this about my aide and credits. I talked to several people up at the school to make SURE that the withdraw would NOT cause me any problem when I re-entered. They kept a 6000 private loan and charged me partial tuition after they told me (and my mom who was helping me with all these calls) that I would not be charged any tuition for a medical withdraw. I gave them pages of med records and the letter from my dr that they requested. They LOST IT ALL!!! I wasn't getting anywhere on the phone so I went up to the campus and had a meeting with the Dean of Admissions and financial aide. The Dean looked me right in the face and said "Don't march in here and expect us to just roll out the red carpet." This is after a month of trying to get reaccepted and my financial aide fixed. He was one of the ones that mom and I spoke to. I told him I wasn't just marching in and that the nursing dept was waiting on my acceptance to schedule me. He made some additional comment that "If I hadn't gone to China in the middle of the semester and started failing I wouldn't have had to withdraw." This is when I got really upset and found out they had lost ALL my paperwork from the withdraw. Smart me...I had given them copies. I left his office, came home and went right back up with all the papers. He actually had the nerve to tell me he "HAD to have the originals." I told him he could make copies of the original and sign them but he WAS giving me my originals back. I had to pay my DR $75 for all the papers and the 3 or 4 pg letter that the school wanted. At that meeting was also when I was told I had to complete 24 credit hrs this semester. It has NEVER been done at this school.

Instead of having nursing and one other course I am taking Nursing(10 class hrs, 12 clinical hrs, around 100 pgs of reading, a good 6 hrs of paperwork & 2 tests a week), Advanced Acting (3 credits with little effort but lots of writing), Critical Thinking Liturature (a paper every week and around 75 pgs to read), American National Government (abt 50 pgs a week, a test each week & a paper every other week). I have completed an on-line history course with an A. I still have to take an on-line math course. I am stressed. I feel pressured and I am scared to death. I am afraid that I am going to fail at this. I am afraid of what it could do to my health or that my health is going to cause me to have to withdraw again.... I just take it one breath at a time and keep breathing. Yes, breathing is good...I like air...lol. I laugh and I take an evening off here and there. I am not afraid to skip classes and my Dr will write me an excuse any time I need one so they can't fail me for that. I am my own worst enemy when it comes to pushing myself to far. I do everything possible to not miss clinical, but I can read the material on my own if I must. I take long hot bubble baths, I watch tv shows that make me laugh and my friends are wonderful and I am currently getting called out the door to go with them to Outback...their treat. Thanks all.

Angie