Friday, October 31, 2008

A Scary Halloween

There are many thoughts floating around in my head. Hopefully I'll get to all of them before they leave.

I woke up out of a bad dream. There are days like today when I wake up to this awful depression. It's like waking up to another stark day of laying around in the uncertainty of chronic illness. I just don't have the tolerance for it.

Lately I've been having this dull achey pain in my lower right side. I've had it before. I had it in the summer of 2007 when Kaiser was running all the medical tests. I've also had liver pain too but my liver values are normal. Anyway, I dreamt I went to see two doctors-both partners. I think they were women ob-gyn's. The one I saw also had CFIDS. I was glad to see she was able to return to her practice but she told me she always felt tired. She went on to tell me that I would be forever tired and that I had ovarian cancer. I woke up shortly after that in a funk. On days like these I find myself unable to find any reason to get up and start another day of taking supplements, giving myself shots only to have the same result. But I do anyway. I get up and I take everything I'm suppposed to take.

My mood didn't change. I checked my email late in the day and found that I had been nominated for the Kreativ Blogger Awared by Renee. I was moved that someone both read and got something out of reading this blog. Tomorrow when I'm less sleepy I will talk about it more. The timing of it was perfect. It got me out of my depression. But more importantly was feeling a sense of connection with someone else who suffers from this. This sense of connection is very important to me.

Tonight I went out with Daphne, Bill, Lindsey, and Ella (both of whom are adorable, wonderful kids). Upon leaving the apt I knew something was wrong. It felt like I was about to have vertigo or that things were going to start spinning but they never did. At times it felt like the ground was going to shift sideways but it never did. I decided to keep going anyway-I wanted to try to enjoy Halloween. We all walked for awhile. I was having a difficult time in this strange anticipatory mode of how I would handle it if the ground did suddenly shift or things did start spinning. It was a strange and frightening sensation. Between that and trying not to step on or be stepped on by anyone made me tell the group I needed to bail. Daphne drove. She decided to stay with Bill and the kids. Against my better judgement I turned around to head back to the car. Destination unknown. I couldn't remember where the car was. I was disoriented. I kept walking with a growing sense of unease. It was dark. There were lots of people. All I knew was to stay on San Antonio. I kept feeling a sense of relief when I would come upon a familiar looking house knowing I was on the right path but just not having a clue where the car was.

I could not find the car though and started to feel a sene of panic. I had to calm myself down because I knew I would pass out if my adrenaline started going. I was already feeling woozy. I did not have my cell phone. I ended up walking through the streets lost and in tears. Finally I found the car. I sat there for a moment shaken by the experience. It was like being in the Fun House at the fair where the rooms are all mishapen. Except it just wasn't very fun.

I got home and immediately started researching neurological diseases. This is a fairly new symptom for me. I've had dizziness. I've had short bouts with feeling like things were tipsy but not for an extended period. I assume this is part of CFIDS. Maybe it's part of how HHV6A manifests. I don't know anymore.

I want my mom.


  1. Oh my gosh, I am so sorry you went through this experience. It must have been awful at the time. I think it is amazing that you did so well with the whole ordeal. You are strong, and courageous, CFS Warrior. I mean that. I think we all are with what we go through.
    I'm glad that the blog award came at a good time.
    With thoughts of you

  2. Hi, I'm glad to find your blog through Renee's.

    I too have CFS. The early years were the hardest. "How can I be so sick and have a disease with such a mild sounding name?" "How do I know something else isn't wrong with me?...are the doctors missing something? I going to the right doctors? ( CFS patients can feel as sick as patients in late stages of cancer and Aides.)

    Their are so many changes and can really send one tottering.

    Wanted to tell you that I too experience spatial disorientation in the dark. Thinking this might have been part of what was happening Halloween night. Also, the stimulation of lights against the dark, excited children etc...can overwhelm a CFS nervous system.

    Again, I am happy to have found your blog and look forward to reading more. I understand with CFS there are times the cognitive symptoms make writing difficult (me too)...I hope you feel as well as is possible and that you're able to write again soon. Kerry

  3. So sorry to hear about your bad experience on Halloween! That kind of disorientation is very scary. I think you may be right about needing to find a new doctor. I can't believe he's not sure whether you should take an anti-viral and your EBV counts are 1600!! Wow - my viral counts for both EBV and HHV-6 are only borderline positive, and I benefited from Valtrex and Famvir.

    I know of one well-respected CFS doctor in California, Dr. Holtorf. Don't know whether he's anywhere near where you are, but you might want to check him out. Living on the East coast, I don't have any personal experience with him, But I've heard good things from other CFS patients, including one guy who traveled all the way from Italy to see him! His website is His website addresses Lyme as well as CFS. Might be worth a try.

    Oh, and your last line was just how I felt all week, too - when I get that sick, I just want to be taken care of by my mom, like when I was a little kid.

    I hope you're doing a bit better today.


  4. renee-

    Thank you for your words. They sure help. I'd never had an experience like that before so it was scary.

  5. kerry-

    Thank you for stopping by my blog. You certainly voiced my feelings. It's a rough illness. I'm sorry to hear you have it too. Thanks for giving an explanation for what happened on Halloween. It makes sense and in doing so takes the fear out of it. I look forward to reading your blog.

  6. Sue-
    Thank you for your wise advice. I really appreciate it. I have what I expect to be my last appt with this doctor tomorrow. You are the second person to mention Holtorf to me. I checked out there website. It's looks good so I sent an email asking about fees, insurance, ect...