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Being Normal Sick

I’ve had Chronic Fatigue Syndrome off and on for about seven years now. I finally started to feel like a normal human being again about four months ago. I still pace myself and get a lot of sleep, but I’m not dragging so much anymore. The heaviness under my eyes is gone. The pep is back in my step!

In the past two years I literally NEVER got a cold- like a head cold. I assume it’s because my immune system was on overdrive. Now that I’ve been feeling better, I’ve been getting sick so much! At the end of December into January I was sick for three weeks! First with a flu like illness, then a crazy stomach bug, then a head cold! It was nuts! The only positive thing out of this is that I guess my immune system is working properly!

I just got back from a vacation in the Dominican Republic. My energy was fantastic! I woke up early every morning and slept great every night. But for some crazy reason, at the airport on the way back I started feeling nauseous. Then on the plane I felt really sick. We arrived at JFK New York and I seriously didn’t think I was ganna make it out of the airport! I literally dragged myself. So I’m now on my couch feeling sick again! It’s like any bug floating around will just attach itself to me.

The problem with having CFS for such along time is that I got used to pushing myself a bit when I wasn’t feeling well- going to work, going to the store, etc. But now that I’m just “sick”, I forgot what it’s like to be a normal sick person. Normal sick people have to rest! And I did not rest yesterday. I dragged myself into the city to go shopping! Now I feel worse :( And I have an appointment in the city later today! Ack. I think I need more vitamin C (I ordered some on amazon yesterday).

**added note- It’s also terrifying for me when I get sick to wonder if my fatigue is back. So mentally I need to stay positive and know that I will be ok.

DR Sip

Last Night’s Party

Working for a big corporation, I’ve been to many, many corporate events. Company wide meetings, holiday parties, team building events, etc. When I go back in time, in my brain, my memories of all these events are all plagued by Chronic Fatigue Syndrome. I remember being so tired at a giant meeting that I popped some Ritalin, only to end up being tired and wired. I remember a Christmas party at NYC’s Central Park ice skating ring. I felt so terribly exhausted but I really wanted to go. I left early, found a bench at the end of the park, called my dad and cried. I cried about how unfair it was that I was always so exhausted, unable to really have fun. The list goes on and on. Yesterday was my company’s big meeting at Lincoln Center. The meeting was followed by the annual fancy Christmas party. I remember walking through the party last night and thinking to myself- I feel ok. I feel normal. Like a normal human being. Not exhausted. Actually, at that moment- nothing was wrong.

I’ve been feeling so good (awake) lately that I stopped charting how I feel everyday. I usually write it on a calendar. 1 feeling my worst, 10 feeling my best. Usually it was a 2 to 3.5. Now it’s probably between a 4 and 6, which is really awesome. I’m still careful about what I do. I wear my pedometer everyday and make sure I don’t over walk. I try to get at least 9 hours of sleep every night. When I was feeling bad I needed at least 10 hours for a few days until I felt a bit better. As far as food goes- I still try to eat a healthy diet but no food seems to really be a trigger for the CFS. I’ve even had some alcoholic drinks! I’m not getting trashed like I used to, but a little buzz and it’s great!

I really want to be like some people with CFS that have recovered (not that I’m fully recovered- yet). They say that their CFS was a blessing in disguise. That concept is still hard for me to swallow. CFS is a mean, mean, mean illness. Yes, it taught me many lessons, and it still is teaching me, but overall it’s horrible. Maybe I’m bitter.

So what (new in the last few months) have I been doing that I feel is/has helped me.
- Pacing
- 9-10 hours of sleep
- Homeopathy (I’ll write about it another time!)
- Speaking to a Hypno- Analyst
- Having a boy in my life
- Having great friends
- Enjoying my work
- Spirituality

I’m still working on a chronic pain issue I’ve been having. FUN. But I’m determined to beat that too. And I plan to do that fairly quickly ☺

And I left last night’s party at a very reasonable hour.

Party

Love, Pain & Therapy

I’ve been feeling really good lately. My energy has really been holding up. I even have days where I push myself and I don’t have a hardcore crash! So what is different in my life? What has changed? Is it just time? Time does heal all wounds, doesn’t it?

I’m going to keep this short because I’m not too much in the mood of writing, but I wanted to get this down. I’ve been happy. Why? If you’ve read my blog in the past you would have definitely read about “California boy”. The guy that I met in NYC along time ago before the CFS, who then moved to California for a few years. We reconnected over the Internet while he was in CA. And it was pretty passionate as far as a internet relationship can go. I even went to California to see him. I was in pretty bad shape with my fatigue. We stayed in touch after that but we finally drifted apart. But just when he was almost out of my mind….he came back to New York. And I’ll just say that I’ve been very, very happy that he’s here. Trying to have a relationship while struggling with Chronic Fatigue Syndrome is not easy (and that’s a whole other blog post). But I’ve found over the past few months that he’s been here, my energy has gotten better. And I’m very happy. Not only have I been able to see him, my social life has picked up and my crazy job as a tv producer has been going pretty well. I think our internet “relationship” spanned about one and a half to two years. Our New York “relationship” has only lasted a few months, and it may be over. Maybe because it’s real life now and not the internet. I know the feelings of love have made me feel better. I don’t know what will happen. I don’t know what I want to happen. I hope this stepping stone will lead me to greater things to come….

Through out the seven years of my Chronic Fatigue Syndrome I have never dealt with pain. Only achy legs once in a blue moon. I’ve been experiencing pelvic pain. I can go on and on about the CFS but the pelvic pain I don’t want to talk about. It’s a sensitive subject. Being the insane reader that I am, I read a book by Dr. Sarno- The Mind Body Prescription. It states that body “syndromes” are trapped emotions in the body. I’m starting to become a big believer in this subject. While I do believe being gaga for this boy has helped me, I have been talking to a Hypno Analysist. We have gone deep down into the depths of my mind, my memory, my childhood. I feel like whatever emotional pain is stuck inside me is slowly coming out.

The pelvic pain may have just started but I’m not letting it stay. I’ve learned too much on my journey of Chronic Fatigue. I’ve also enlisted a mind body coach to help me. We’ve just started but I’m already learning techniques like Byron Katie’s The Work to help me deal. (Check it out on the web).

Ok, this post is way too long! I could keep going but I have to do my mind body homework and then go to bed!

Healing happens.

photo copy 18

I Love You

I’m sitting here, feeling a bit hollow, after crying my eyes out all morning. I’ve pushed myself too much. Now the worst fear of all- the unknown, has crept into my head. Will I be tired for just another two days? Maybe just over the weekend? Two weeks? Three months? This fear is terrifying.

July, so far, has been a pretty damn good month. I’ve had a lot of good days. But I have been playing the yo-yo game. One week great, the next week crap. I have not been pacing all that well. Us Chronic Fatigue folks are supposed to stop an activity even though we still feel good. Not keep pushing till we feel bad! And I know inside my brain that I should stop. It’s just hard to stop when fun is being had.

Many people with Chronic Fatigue have had troubled childhoods. Many were abused. I wasn’t abused, but I did have a traumatic childhood. As an adult we aren’t able to process stress correctly and maybe we are just walking around stressed out all the time without even realizing it. Physically pushing it too much or mentally pushing it too much will send us over the edge into fatigue, collapse.

I’ve been working with a Hyno- Analyst who helped a woman I met over the web get over her Chronic Fatigue. She was sexually abused as a child. We’ve been going back in time, to traumatic scenes in my memory and reversing them, making them happy. A big theme is the fact that I grew up without a mother, someone to be with me while I was scared. Yesterday, through my tears, we went back to about 5 years ago when I had one of my crashes. The scene is always the same- crying over the unknown. The Hypno- Analyst asked me if I can say something new to the crying me, what would it be. The first thing that came into my head was “I love you”. My subconscious came out. I need to be my own mother now and hug the fear.

As my CFS buddy Laura said to me today- “ you’re replaying an old program”. Meaning that the past is gone. The crashes from the past, are in the past. This “blip” doesn’t have to be HUGE. Maybe I am making it all too huge. But GOD it’s scary. But I need to be brave and hug my 32 year old self and tell myself- I LOVE YOU.

It starts now. The tears have fallen. Deep breaths. Keep going. Keep getting stronger. It’s time.

I Love You

I found this super gaudy I Love You and it’s now the wallpaper on my phone. A good reminder! The inside wallpaper of my phone is something else that makes me smile….

Believe

I have a girlfriend from California that had CFS and recovered. I’ve written a lot about her on this blog. She recently had a health scare that landed her in a wheel chair for a month. I was shocked when she told me. I said to her- that must have been horrible and scary! Her reply to me was eye opening. She said it was bad but she never believed that the situation would be permanent. She new whole heartedly that she wouldn’t be in that wheel chair forever.

For me, with Chronic Fatigue, I get totally stuck in my head- When will this end? This keeps happening! How do I live like this? The mind is such a big part of healing. I have to remind myself that. I amazingly have been feeling pretty good with my energy! My eyelids aren’t heavy and I’m not in a constant daze! But I now have this mysterious pain in my body and yes it’s making me insane! My anxiety over it is out of control. But then I stop, breathe, and pull myself back together. I wasn’t born with this pain. My body can and will heal itself. But it starts with staying calm!

I’m reading the book Mind Over Medicine by Lissa Rankin. She writes about how healing is not going to happen in an overly stressed out body with flight or flight hormones flying around. She writes about the placebo affect and why it happens. Why people who see famous healers get healed. She believes it’s because we believe in this drug (really placebo) or we have total faith in a certain healer. It’s us! It’s our mind! It’s fascinating!

Believe in something: God, angels, the universe, nature. Believe that nothing is permanent. Believe that you can heal. I’ve been trying to focus on the positive. When you follow the positive path you open yourself up to new people, amazing experiences and renewed mind/body health.

Mindovermed

Decisions

The past few weeks have been extremely stressful and emotional for me. After talking to numerous people that are getting treated for Lyme Disease, I decided that I was ready to get treated too. The treatment is getting something called a Picc line put into your arm. It’s basically a tube that’s inserted into your arm so you can drip liquid antibiotics into it. Very invasive. So, I saw Dr. Galland and got retested for Lyme. My results weren’t that great. Dr. Galland said he wasn’t convinced that I had Lyme. I nearly started crying in his office. The only positive tests I had were some Igenex Lab bands, something called an Ispot test, and a parasite called FL1953 (not much is known about this parasite). Galland said that if I wanted him to, he would treat me. I went home and decided that I needed a second opinion. There was a Lyme literate doctor in Mt. Kisco NY that I made an appointment with. The consultation price was 760 dollars! Crazy. I was mentally all ready to go….

In the meantime, I started doing sessions with a hypno-therapy lady who lives in California. She believes that the mind can heal the body. When I told her I was going to do the Lyme treatment she basically said she would no longer work with me if I did the treatment.

Then I got a lecture from my father about why I shouldn’t go through with the treatment. I haven’t cried so much in a long time. My intuition was telling me to do the Lyme treatment but my father and Hypno lady were very against it. I know that a lot of people resort to the antibiotic treatment when they are basically disabled from symptoms. My fatigue has been killer but I can work and basically function. So I decided to put off the Lyme treatment- for now. I’ll work with the Hypno Lady and see what herbs or supplements Galland suggests next.

Today I took off from work because I was supposed to see the Lyme doctor. It’s a beautiful day outside. But I’m exhausted on my couch. Work has been insane. I’ve been seriously pushing myself through the day. Because I’ve been so stressed about the Lyme treatment, I have not been sleeping great. I’m not getting my 9-10 hours of sleep.

So the question is- Can the mind heal the body? Whether this is Lyme or CFS, can I overcome it on my own? I think the first thing to do is get back in touch with my true self – be positive, be calm, breathe.

May 12th

I’m exhausted. I had two weeks where I was feeling pretty good and then BAM! Saturday I felt terrible. I went out after work on Friday. Maybe I should have just went home? I had wine with a girlfriend and then met a boy for dinner. Was it all too much? I guess so. I slept 11 hours Friday night, woke up, did some errands, and then came home and passed out on my couch till 6pm. I had to cancel my dinner plans.

I’m so frustrated. I get a taste of what it’s like to live a real life and when I really start enjoying it the fatigue hits and I’m confined to my couch. I didn’t want to write about feeling crappy. I wanted to write about how well I’ve been feeling. I thought I was getting better, but now I honestly don’t know. It’s such a roller coaster.

Today is May 12. CFS Awareness Day. I hate telling people I have CFS or that I feel ill. I just want to blend in with everyone else. But the longer this illness goes on, the more I want people to know about it and understand it. My hope is that I get well from this on my own and then very soon, someone will come up with some sort of treatment for this horrible illness.

I don’t have an appointment with Dr. Galland, but I am going to call and demand one tomorrow! I think I’m ready to try the Lyme treatment again (a scary thought). Last time the antibiotics made me extremely ill. Nothing is easy! I recently found this article about Dr. Galland and a girl who thought she had CFS but really had Lyme. It’s a good read.

http://www.self.com/health/2008/05/chronic-lyme-disease-lessons?currentPage=1

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