Friday, June 4, 2010

Post #8

I've written seven posts that I've either taken down or not published for one reason or another. I feel like things are germinating in me but I'm not feeling very articulate. There is a lot going on internally as well as a lot going on in the ME/CFS world.

There is a documentary called "What About ME" due to come out in 2011. I watched the trailers and found them quite moving. At one point there is a woman talking about the people she knows that have committed suicide as a result of this illness. She said their bookshelves were lined with self-help books.

Here's a link:

The suicide rate for people living with this is very high. The psychologizers would have people believe that  we suffer from depression that will be fixed with some anti-depressants and cognitive behavioral therapy. They fail to see that 25% of us are so ill that we can not attend to basic activities of daily living, that we live our lives in isolation, and that we have a neurological disorder (in addition to immune system dysregulation) which produces all of the symptoms consistent with traumatic brain injury. We are fighting very hard for our lives.

This is a very different life from the one I imagined. I've gone from researching ideas for my dissertation to researching the best wheelchair to get. From going out for coffee with friends to living my life in isolation. I used to believe in the medical system for the most part. I now see how we don't have a medical system at all but an insurance system which is great when you are healthy...but horrible when you have a chronic illness.

I think what shocks me most is how easy it has been for people that I knew to discard me once I became so disabled by this. Trying to reconnect with old school friends has been eye opening. Things are fine until the question: "so what are you doing now?" I tell them and then never hear from them again. I once believed in the constitutional illusion that all people are created equal. They should have included a disclaimer "that all healthy people are created equal." Once you become disabled you realize there is a US version of the caste system with disabled people at the bottom. So I no longer answer the question "what am I doing now." In fact, I've stopped trying to reconnect with anyone.

One would think that after 3 years of being sick that I'd get used to it by now. With this illness 3 years is nothing. Three years is still within that window of shock and awe. It is still within the time frame of being hit with more losses as the few people who did try to maintain a relationship with me have also gone their way.

I'm still angry about it all. Maybe it will never go away. I do have moments of peace and joy. Most recently was last weekend when I was able to leave the house for a little while. We went to a high end stereo store so I could get some headphones. I treated myself to a pair of Grado 125i headphones which are ugly but sound heavenly. The whole experience at the store was wonderful. I got to sit in a comfy chair and listen to different headphones. I'm grateful I can still listen to music. It's the one thing this illness hasn't touched except for those rare days when my head hurts too much to listen to anything.

I guess I'm adjusting to the fact that I've tried so many treatments with nothing to show for it. Short of stem cells I don't know that anything will help.

So I will continue my search for a wheelchair/scooter, lick my wounds, and continue to try to grow spiritually.


Toadlily said...

Your story is a reflection of my own. The worst of all of this is that now, that we 'think' XMRV goes beyond just an association, all my advocacy/awareness emails to friends and contacts go unrepied to. They will reply to emails that are happy and have nothing to do with my illness. It makes me just so angry and frustrated. Last week, my mother told my aunt on the phone that my lab results came back positive for XMRV. My aunt did not say one word. Nothing. She didn't call, or email me. It's cruel.

I tell myself "I give up", I will no longer send anything to anyone, and I will never reply to any email they send.

I tell myself this, and anger and hurt make up the rest of my week or so, until I get my persoanl power back, and continue to send emails because it's not about me anymore; it's about them and the risk they are at for getting exactly what I have via the blook bank or via bodily fluids.

And on it goes...

Judy said...

OMG your post brings up so many thoughts and feelings. The kind that make me want to get busier on my own blog. The trailer is scary, alright. Getting a wheelchair is not an option for me for many reasons, and the thought of needing one scared me so bad I forced myself to get my body stronger. Also, after losing my friends to this dd 12 years ago, I now tell new people in my life that I am a Domestic Goddess and avoid talking about the dd at all costs. They will find out soon enough when I have to keep cancelling dates, huh. Then they will dump me too, huh. I have moderate BPD also and have learned that I can "fake normal" which works in social situations. So I've adopted "faking normal" as much as possible with the CFIDS also.

Renee said...

I am reaching across the country to give you cyber hugs from my corner of the world to yours. I am so sorry that you are continuing to do so poorly and having to think about what kind of wheelchair to have is challenging to say the least. I have one myself which is right now stored. I have not had to use it for quite awhile, but that is because I cannot be out in a mall, or on a sidewalk due to worrying about exposures. Anyway, it is here when I need it just like the walker ~ Just tools to support us, but yet, not just tools...but a blatant reality of what we have lost. And you are right, not many people really get it...that is why it is SO important to stay connected with those who DO get it~ The bloggers, the support groups, those who see our struggle on a daily basis. I wish we could gather daily for the hugs we need, the words we need to hear...
You are in my thoughts and prayers, Terri...Joel and I prayed for you this morning and we will continue to do so...
I am going to go look at the trailers of the documentary ~
thanks for telling us about it...

Alison said...

I can definitely relate about writing posts and then not publishing them.

You touched on some important points here. I just keep nodding my head. Thanks for writing. And congratulations on new headphones. When I was really sick and in bed all the time my uncle got me a nice pair (beats by dr. dre) I listened to a lot of music and it really took my mind off things and let me escape.

Joanne said...

Thanks for the link into the two trailers both of which are excellent I will add to my blog soon.

Good luck to you in finding something to help you recover your life and health.

Anonymous said...


You posted a blog on the 3rd of June which started "Stanford Research Study on Chronic Fatigue-Free Extensive Blood Tests" which you have now removed. May I ask did you remove it due to any concerns about it accuracy? I can only find instances about it where your blog posting has been reposted elsewhere, but no other reports about this Stanford study being done by Dr Montoya.

Best regards,


Lee Lee said...

Like many people reading your blog I can totally relate, most of my 'friends' have not contacted me at all since I got sick and those that have just sent one liner emails etc ... such a disappointment. I am lucky to have 2 freinds that have stood by me and mum and dad. Th edocumentary does look interesting, lets hope it opens some eyes!
For the person who asked about the Stansford study, this is an overview

d page said...

I have had this illness for 32 years, and I haven't gotten used to it! I can also relate to the people who have the mindset of "illness as failure" that have stopped communicating with me. With ME/CFS, we can't base our self esteem on how others chose to perceive us. Unfortunately, our current culture lacks empathy, and compassion in the rush for self- gratifications.
Thank you for your honesty with your process.

Dominique said...

I can't tell you it's going to get better because after 20 years, I cant' say that. But I cant tell you that it does become a little easier to deal with.

I find it alarming that we have such a high suicide rate. That really just makes me want to spit.

As for people not being compassionate like old friends, I have come to realize, how could they. They have no frame of reference in which to understand what we live with every day. They HAVE to move on with their lives and make money and what not. Trying to squeeze us into their busy lives is a challenge at best.

We unfortunately can't.

I have tried finding ways that I can help my friends from within my 4walls and a view. I have this one friend who is computer inept big time. I help her anytime she needs help.

Maybe if you could find things that your friends need and you can do, you can create a bridge that can help you navigate the changes in your relationships.

Sometimes, people don't know what to say and do and to be honest, I think we scare them. What if it was reversed and we were healthy and they weren't. What would we do?

Sending you hugs and prayers.

Anonymous said...

Hi Lee Lee,

Thank you for the link, but it was the Montoya Stanford study that cfswarrior had posted about in
the page below that I was querying

here is a shrter url in case above url doesn't work



Laurel said...

Just a quick note to say I'm sending hugs and good thoughts your way. I know how hard and frustrating it all is. Hang in there!!

cfswarrior said...

Thanks everyone! I'd write individual thank you's but I had a bad night's sleep. Maybe later in the day....

Ian-I took the post down because I read on the discussion board on Facebook where the study was posted (as well as a thread on that I can't find anymore) that they took down their info from Facebook because Stanford has some sort of protocol that needs to be approved before posting the study.

I can send you the info I have about the study if you email me at

Jo said...

I think you are right about the hidden caste system. We have it over here too. There's so much faux 'awareness' about that real awareness isn't really happening.

Keep blogging girl. I'm sure there was some good stuff in those deleted posts.

Hattie said...

So excited for the documentary - it's so important to raise awareness. A foremost expert on CFS, Dr. Jacob Teitelbaum, has just put out a new book called Beat Sugar Addiction Now: It is written in a simple style and outlines his easy to follow, multi-step plan. He begins by identifying 4 main types of sugar addicts and then outlines a specific plan for each type of addict to follow. He explains how sugar plays into the problems suffered by each kind of addict and goes into detail when clearly and succinctly explaining how to beat the cravings. While Teitelbaum does not provide recipes or meal plans, he does give guidelines for healthy eating and lists of recommended foods as well as the glycemic index for many common foods.This book would probably be helpful not only to people attempting to lose weight, but also to those with illnesses such as Type II Diabetes, Fibromyalgia, and Chronic Fatigue Syndrome, just to name a few. Though Teitelbaum is a medical doctor and is clearly coming from a medical background, he writes in layman's terms and creates a book that will be easily understood by most people.

Pris said...

Being in a crash right now I really relate to your post. And yes, losing friends was so very hard. I rely mostly on internet friends since they don't have to deal with my constant explanations of why I can't go somewhere or do something with them. I have two long time friends who have hung in there with me and I'm grateful for that. A cousin who was close to me since childhood has barely been in contact since i got sick. I could go on and on but I won't.

We'll all pull for each other.

Toni said...

I agree about the hidden caste system. People tend to treat illness as some personal failing on our part. I hope that attitudes toward CFS/ME begin to change with all the new studies underway and with this movie coming out. Hugs to you, Terri, for writing so eloquently again about what all of us face.

j said...

i googled 'cfs warrior'... and ended up here. bingo!

you speak so articulately of the dilemma we face in trying to achieve connection & support in living with this illness.

i too have reached out to old friends... only to see them vaporise once i admit i'm 'not working'. 'not working' i put in quotations, because surviving with this illness is more work than any job i was ever paid for.

i too have watched supposedly good friends bail ~ drift, close doors, rudely abort long friendships.

this illness seems to touch a deep vein of fear in people ~ in a society that values independence, speed, and productivity, we are the reminders of the shadow side, the cost of that.

glad to have found your blog :-)


ps i blog at