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I’ve been feeling like a ping pong ball lately- bouncing all over the place. I’m trying to get my life together, which is not easy when you’re trying something new while feeling like shit. I’m either tired, in pain (pelvic), or nauseous. The nausea is this new extra fun symptom I’ve been dealing with. I’ve been so desperate to feel better that I’ve been experimenting with a few prescription drugs. Low Dose Naltrexone and Gabapentin. LDN is supposedly a miracle drug for some people. I was hoping it would be a miracle for me too, but I had to stop it before I saw any results. The meds were either giving me a nausea side effect or irritating my stomach. And honestly- yes, part of me wanted this quick fix, but the other part of me was extremely bothered by the amount of pills I was downing every night. I’ve never imagined myself as one of those people who take tons of drugs but that’s what I felt like I was becoming! I’m starting to feel like my abnormal is my normal. Just last night I was thinking- Who would I be without the health issues? I’m a 33 year old woman. Would I be a world traveler? Maybe a party girl dancing the nights away. Maybe I’d be one of those hardcore work addicts. Maybe I’d be rich! I do know that since I’ve been a little girl, I wanted MORE. I wanted bigger! A dreamer that believed if I was going to get somewhere I needed to work my ass off for it. And I’m trying to do that now (although I know not to push too hard!). I am pushing myself even though I’m scared and unsure of the situation I’ve gotten myself in. I know if I go backwards I’ll feel defeated. When I feel well and healthy I know that I can do anything. I know that I’m good at what I do. A good person. So what’s next? I have to keep moving forward. I have to start doing things I know that are good for me- like a clean diet, meditating, I have to stop focusing on feeling unwell.
Have you ever just wanted to scream? Like really loud? There should be places where you can pay a few bucks and scream your heart out. Forget about getting a massage. How about a good scream?
I haven’t written much here I guess because I’ve been doing ok. I would have the occasional dip, but it never lasted too long. About a month ago I considered making some big life changes. The thought of it was exciting but also gave me great anxiety. I want change so bad, but I’m also terrified of it.
Two weeks ago I took a week vacation to California. I’m not sure if it had something to do with the flying or the time change, but I had a crash. A week later when I got home I decided- YES I want to make these life changes. I was still tired and then extremely anxious about the thought of the life changes. Normal people don’t think as much as me….or as fast as me. I’ve literally burned myself out. I don’t know how bad it is yet. Time will tell if I crashed really hard.
My father who has been my biggest support my whole life is against this life change that I want and it’s extremely hard for me to deal with that. I am an adult but having Chronic Fatigue has made me fear everything. Will I be able to function and support myself like a normal human being?
I’ve decided to take a leave from work. I’ve contemplated this in the past, but never went through with it. Most people might be relieved that they are able to take a leave from work but I am more traumatized by it. Again cause it’s change.
My mind is my worst enemy. Physically doing too much has always affected my energy levels but anxiety is a killer. I’ve been on anxiety medication for years but a few months ago I dropped the dose because my life was stable and well….it makes your brain kind of numb. But now I contemplate going back up on the meds. I don’t know.
So what now? I feel pressure under my eyes from crying so much and being fatigued. I’m beyond overwhelmed. I want to make this life change, but I have to be healthy- both physically and mentally. I WILL make this change. I have to.
Now that I will have ALL this time these are some of the things I will do to steady myself.
- I’ve joined Toby Morrison’s online CFS recovery program. I just started it but I think its main components are getting your body strong through exercise. Something I haven’t done in a long time! But it will be a slow gradual process.
- Give more time to Ashok Gupta’s recovery program. It’s main components are stopping negative thoughts, meditation, and visualization.
- Going back to a shrink that helped me immensely a few years back. I feel like I need someone to help me stay centered.
- Blog more!
Do you think I can do it? “Life change” will be announced when the time comes……
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.
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.
– 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
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.
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!
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 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….