I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
To send me a private message, please e-mail me: flylittlewordsfly@gmail.com
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My illness, Myalgic Encephalomyelitis, is a complex one. It's causes are unknown, and there is no known cure. The research is in early stages, and the medical politics are from what I understand quite interesting, because it touches so many of the body's systems, and because disagreements between several factions as to naming and diagnostic criteria. It is also known by the misleading term Chronic Fatigue Syndrome. Fortunately for me, I live in Canada, where there has been consensus on the diagnostic criteria for some time, and I have not faced many difficulties in terms of credibility or getting adequate support. Whatever you call it, it is a serious illness that affects more people than you would imagine, considering how little most people know about it.

Seemingly the most affected points are my hypothalamus and my cells. You know, just the area of the brain that controls how the body functions, and those little things that are what make life possible. That's all  >_<

With no further ado, I present my symptomology, grouped more or less by the area of disturbance, with a brief note about how I'm trying to deal with each.

Stress Response and Anxiety (Neuroendocrine):
I overreact to any kind of stressful situation, I am more sensitive to environmental factors (smells, chemicals etc), and I have lower energy levels. Why? My hypothalamic-pituitary-adrenal axis does not work properly. This means my body creates lower levels of cortisol. The theory is that my flight/fight response (sympathetic response) is overactive, and therefore throwing the system out of whack. So this means that I am more anxious, irritable, more prone to picking fights, or taking a passive-aggressive stance. I take things more personally than I should, and it takes longer to get over things. All of this because my body is reacting to every situation as if it were under a great deal of stress (because, you know, lying on my couch most of the day is very stressful). I am aware of this, and am working with and without my therapist to counteract these responses with conscious effort. I am also taking a homeopathic remedy that activates the parasympathetic response.

I alternate between chills and sweats (and I'm waaaaay too young for menopause!), I get dizzy easily, I easily run out of breath (remember when I could sing?) I get palpitations, and sometimes my blood pressure is low. Anything controlled by my hypothalamus is not working properly. I keep a thermometer on my coffee table to monitor room temperature, because I got tired of continuously freaking out (see above) that my heater had stopped working. I dress in layers. Using a cane helps with balance and energy conservation. Lying down eases the palpitations.

My body does not produce sufficient melatonin (the sleep hormone) or tryptophan (the stuff in turkey that makes you sleepy), and my circadian rhythms (natural day/night response) are off. Added to the overactive sympathetic response, this means that it is very hard for me to fall asleep. Really really hard. And once I'm there, the lack of melatonin stops my body from getting enough deep sleep, meaning that I wake up unrefreshed. I have been guided to take sleep aids, and to remove my computer from the bedroom, which was hard to do, but has helped tremendously. 

Cognitive (Neuropsychological):
This set is, believe it or not, the most frustrating set of symptoms for me. Levels of concentration, recent memory and word retrieval are ridiculously low. Reading (or writing about) things that make me think make my head hurt after about 15 minutes. Apparently my processing speed has slowed substantially (I need an upgrade!), my working memory is impaired and I have trouble learning new things. This is hell. If you know me, you know this is where I thrive. My brain has always been my playground, and I love going to school, both as a teacher and as a student. I was the kid who got in trouble for reading too much. I repeat. This is hell. And there's not much I can do about it, besides take Omega3's, and take advantage of the brief moments of clarity such as this one right now.

Cellular and Muscular:
My muscle cells do not produce enough ATP (energy molecules). My muscles are therefore in an anaerobic state, which is what normal healthy people experience as that lovely "I just had a great workout and can barely move, my muscles are so tired" feeling. Only I get that all the time. And if I try to exercise, all my symptoms worsen. Enter controlled walking and activity levels that are slowly and gradually expanded.

This all started with a virus. We don't know which one, and we don't know why. It seemed to be a normal cold. It's a very common onset to this illness. But now my immune system is attacking all the 'wrong' things. I get sick easily, but not in the same way as the people who were kind enough to share their germs with me. Not much to do here, except the usual wash hands and all that. And avoid being sneezed and coughed on by my lovely affectionate child (as if).

All in all, it's not so pretty, but it's manageable. I just wish more was known.


  1. By knowing you well, I wouldn’t expect you to get a common illness; that is not for you. You needed something more challenging, and here you have it. Also by knowing you, I know that you will fight the illness and you will be able to go for other challenges (no more illnesses please), and those will make you very proud.
    I love you, with all your not functioning pieces. Tocayo grande

  2. You know me a little too well!

  3. I'm sure you've had everything tested under the sun, so please don't take offense but have you ever heard of thyroid resistance - it has similar symptoms to yours. Thought I'd share.

  4. Thank-you, I actually do have a diagnosis, I have simply chosen not to make it fully public at this time. I appreciate the suggestion, however!

  5. this was very helpful to me - thank you. Miss you and thinking of you so very often - if only the running comentaries in our heads could find a way to connect - blue tooth maybe!!!!

  6. Andy,
    Well done. This blog is insightful for anybody wanting to know what ME/PENE is and about how someone feels and copes with ME or PENE.
    You've also collected some interesting metaphors from others that provide a picture for non-sufferers of this illness.
    Thanks for sharing.
    I know you're laid low at the moment. I don't pray but I can/do send out positive thoughts to you. Namaste.

  7. Thank-you! I appreciate your kind words and generous sentiments.

  8. I love your blog....I use caringbridge in the same way....it's funny b/c you don't fit in any medical "box" any better than I do...:-)

    You are amazing!


  9. We're like two peas in a healing lulling pod! You are as amazing, my darling!

  10. thank you, Andy, as much as it as useful to put a label to what your condition, this one is really a collection! I am amazed to find out that it matched around 80% what i have, but i never bothered to diagnose it. I guess because when my system collapsed after continuous yo-yo I went through dramatic lifestyle change and had a long period of simple rest. I have noticed also, and I am not implying that you have it, but merely describing "my condition", I started noticing big problems with my periods, PMS like, but also very physical. Mind you, when i fist started noticing, all around me said that they noticed it long ago, I just never saw it a problem for me. Compulsive eating, low energy, yo-yo bipolar like moods, back problems...and there is more.... Stress just brings intensity and collapse... First, I remember a thought "i need to take care of myself"... but it wasn't enough to do it just once a month (thanks goodness for my periods - they regularly reminded me, if not for them i would probably take a break ones a year if even that). I had a major breakthrough and a complete turnaround when i decided that i needed to take care of myself not just ones a month but every single day, every single meal! Going back to basics - food/rest/nurturing human contact and support - it is simple, but it is not easy... a lot and a lot of love Andy!!! I am glad you are here, you are a strong person I know, you don't need to try to be strong, it will always be with you, your strong spirit! it is real!

    1. Thank-you, Mila! Glad we found each other. It *is* about every day, every moment. Becoming aware of who we are, how we do things, and why. It is simple, and it takes time, and it takes patience, and perseverance, and dedication to living life in a healing and self-nurturing way. This is how I want to live - whether I heal physically or not - I want to live in a way that is good for me, in which I can enjoy what I do have, and what I can do.

    2. Thank you Andy, you are gorgeous!

  11. Found your blog today, Andy, and it's as if your words came out of my brain. Thank you for saying what so many of us have trouble with. Stay diligent! -SherryB

    1. Thank-you, Sherry! Glad you found me :)