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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Monday, 29 August 2011

Getting Back to Myself

Ok, apart from the fact that I woke up convinced it was Tuesday, I finally feel like I'm getting back to my old new normal!

I cannot tell you what a relief to wake up and be able to move within 5 minutes. To sit up and not feel like my head is about to fall off, and to come downstairs without dragging my right foot. This is indeed a moment worth savouring and celebrating.

I am feeling only residual sadness that I'm not in school today, and I am determined to make the most of this week until my stress test. Today I feel that determination come back, and that is such a key aspect of who I am on most days, that I feel like I'm welcoming myself back into my own life.

Another Bittersweet Moment

Once again, it's not like I had a choice. I've known for quite some time that I would not be teaching this year. I've been working with my successor, helping him figure out how to do my job. This is no surprise.

Here's the surprise. I'm sad tonight. I didn't expect to be, but I am.

Tomorrow, the staff at my school (yes, it's still my school) will meet, and plan for the year, and start getting their classrooms set up and start to build a team. And I won't be a part of it, for the first time in 6 years, I will not be a part of it. I won't play catch-up and chat about weddings, or children, or gossip about families or have really incredible heart-to-hearts about what we're going to do differently this time around. I'll miss the excitement of the fresh classroom - putting everything just so, and the crisp feeling of anticipation and preparation.

I will be at home, still managing my way of this crash, and putting my energy into getting myself back to where I was a couple of weeks ago. No question that's where I need to be and that's what I need to be doing. But doing and wanting are not the same thing, and it's not what I want to be doing right now.

What I am feeling is a simple sadness over the discrepancy of what I need and want, and a gentle anger at the illness that has forced this major change in my life. I am feeling these things because they are normal natural expressions and reactions to my situation. They will pass, because I am feeling them, acknowledging them, and letting them pass. It still sucks, though.

Sigh. Maybe next year...

Thursday, 25 August 2011

Heart Tests

My visit to the Toronto General Hospital today for a tilt table test turned into oh so much more. It turned into a day's worth of testing and waiting, and testing and waiting, and testing and waiting. I have been hooked up to machines things today than in every day of the rest of my life! I even brought one home with me.

Yes, as I write, I am wired into a holter monitor - basically a portable ECG. Ok, first, this is so super cool! Second, man the stickers and tape all over me are itchy. Third, I hate having this thing strapped to me - I feel like I'm still wearing my purse! And fourth, I am concerned about how sleeping is going to work.

The staff at the hospital was lovely and helpful and friendly. All of them. I know, right, incredible. But true. First I had the normal ECG done. And it was so fast, that I was 30 minutes early for the Tilt Table Test. Now this was an experience. The tilt table is basically a hospital bed with a footboard, and a ton of straps to hold you up when (as the name suggests) the doctor tilts it up to a nearly vertical position. They do this to measure blood pressure and heart rate when lying and standing. Fun, fun, fun. My arm was extended for the cuff monitoring the pressure in my fingers, so my Dad, who watched the whole thing, said (and no offense is meant by this at all) that I looked "half-crucified."

Tuesday, 23 August 2011

Hanging In

Still crashed out.

It seems I did not give myself enough rest between the tough week last week and yesterday. Yesterday was a 3 activity day, which was obviously too much.

I think the last time I had a day like today was several months ago (which is amazing in and of itself!), and while it's bad, I know it will end, and that I will catch up. Having said that, it's really frustrating, because I thought I had a handle on things, and that I was past these really rough days. But I guess not.

On the bright side, tomorrow I see my nutritionist, on Thursday I have an appointment with a cardiologist, and on Friday I have my wonderful therapist, with whom I know I will find the light in all of this once again, even though I never really lost it. My second self-help course starts in a month, at which time I will also be meeting with an osteopath and my rehab person has found me a Cognitive Behavioural Mindfulness therapist with whom to plot some things out as well.

Saturday, 20 August 2011

Crashed out

The crash has come. I've been expecting it. I knew it was coming. And now it's here.

If you've read my last few posts, you know what a week I've had. This was inevitable. I can only hope it does not last too long.

My weakened heart pushes lead through my veins.
My mind is enveloped in a hurricane, that blows thoughts through at lightning speeds, leaves holes behind and twists and turns all the while.
My leg reluctantly drags my foot.
My feeble neck cannot bear the weight of my head.
My skin tingles and crawls with electric pulsation.
My chest heaves with the effort of breathing.
Yet my spirit soars with every breath I do take
And my pride swells with knowing what I've done and seen and felt and known
And creativity floods every cell of my being
Just as happy memories flood my mind
And contentment fills the spaces my soul inhabits.

Wednesday, 17 August 2011

Doctors, Dentists and Flus, Oh My!

My parents are still away. My son's Step-mom is away. Both my son and I have been hit with a flu-like virus, confirmed at a doctor's appointment yesterday afternoon. He had oral surgery today - it was supposed to be a simple tooth extraction, but it turns out he had some tooth-like growths that were twisting the adult teeth around. The bigger two are the size of baby teeth. Having spent an anxious 2.5 hours at the dentist at my weakest time of day after a few days of not sleeping well has me feeling like my blood has been sucked out and lead pumped back in it's place.

And yet...

I feel supported. I am calm(ish). I am happy. I am proud. I feel like I've really achieved something amazing.

When the dentist finished, he turned to me and said that my son had been extraordinary in the chair. He should know - he sees a lot of children. That's normal for us - all the dentists and doctors and teachers, and everyone always says how great he is. But then he said something that made me swell, feel guilty, and then, remembering my post about pride, I allowed the swelling to continue and said "Thank-you." He said "you've raised a very confident boy." Again, he should know - he sees as many parents as he sees children.

Monday, 15 August 2011

Superviviente - Survivor

Today's musical selection comes to you all the way from Spain. Ella Baila Sola was a group/duo that had huge success in Latin countries in the late 90's. I really like their folk/pop style - its like a populist version of the Indigo Girls. But of all their songs, many of which are about female empowerment (just like the Indigo Girls), this one  - Superviviente - is special, and not just because of the killer harmonies and catchy tune.

I couldn't find a video of the song, but here is a black-screen with the song playing, and one with videos of waves.

This is a song that I turn to when I'm down, when I'm up, whenever there is any kind of upheaval in my life. It's been on my soundtrack for break-ups, clean-ups, cheering-up friends, low-down, and all kinds of other moments. Sometimes I listen to it and it is about me. Other times, it's about people I admire, or I love.

Nunca te he visto más alto ni más guapo ni mejor

te han sentado bien los años y me alegra oir tu voz 
en el fondo de tus ojos donde guardas tus caminos 
lo que llena y lo que duele lo que nadie más ha visto 
es allí donde me quedo y en tu nueva paz respiro 
y me crece verte fuerte porque todos somos niños

Saturday, 13 August 2011

Ownership and acknowledgment vs Bragging and Boasting

Warning: bragging and boasting below! Ok, hopefully it will only be self-acknowledgment, but still, you've been warned!

Much of my therapy session the other day twisted over to the fact that I have a real problem owning my personal accomplishments, as do many many women in this world. We are taught (implicitly) that to toot our own horn is bad form, un-ladylike, and downright rude. After all, "pride cometh before the fall," and Icarus did fall. Boastful people are annoying as anything, and braggarts are rarely respected or believed. So we hide our accomplishments, don't express pride, and diffuse compliments and credit that is given to us. In effect, we dis-empower ourselves.

So I had a little chat with the aspect of my self which believes all that to be true. And she told me that nobody would like me if I took ownership of my success. Luckily for me, I was able to refute that idea, by recalling times when I have taken ownership and have not suffered for it (yes, I do actually talk to myself, and yes, it does help - it's part of how Gestalt works). You see, what I realized that day is that bragging and taking ownership of our accomplishments are not at all the same thing.

Bragging comes from a place of insecurity - it's like saying "Look what I did, that makes me great, now will you like me? Please see how awesome I am! Look at me, I'm here! Please like me!" It hides self-pity in the cloak of self-importance. And all self-importance ultimately does come from a very small and dark little place - it is quite simply overcompensation. I've done my fair share of that, mostly in my younger years. And no, it did not make me popular. Those kinds of actions rarely appeal to emotionally secure people. They appeal to people who are themselves insecure and are looking for someone behind whom they can hide. Bragging can also be about taking credit where it is not due. Trying to compensate for what we see as our own failures by taking credit for other people's successes.

Thursday, 11 August 2011

Without my Safety Net

So my parents are out of town. I went into therapy today, and said I really feel their absence. My therapist nodded understandingly, and asked how long they've gone. They left yesterday. Yep.

For the last two days, my driving, food preparation and clean-up activities, not to mention child-care have just about tripled. Yesterday, I actually left the house 3 separate times. I took my son to camp, brought him home, and took him to his soccer game. Unheard of. And I am feeling the effects. Yes, I can do it, no, it's not so bad. But it's interesting.

Any other Wednesday, one of my parents drives us down to the soccer field, drops us off right there, and goes to part the car. Afterwards, I will walk partway to the car. Last night, it was my 3rd drive of the day (I know, that doesn't even do anything for most people, but for me it is a very big deal) and it was extremely difficult to find a space to park. After walking a full 8 minutes to the soccer field, I lay down on the grass to allow my heart to settle back into a normal rhythm. I was down so long, that I even got a text from Stepmom, asking if I'd just dropped the boy off and left. She didn't even see me there. A painfully slow walk back to the car, and I was able to get home just fine, but quite tired out.

Tuesday, 9 August 2011

My Support Team Wins!

I am really very touched and excited, to have won a prize for something I did not do!

I am an active member on the message boards at the But You Don't Look Sick community, and a few weeks ago, we were invited to share our stories about the people in our lives who are not professionals, but take care of us just the same - our "spoon helpers" - the people "who are there at 03:00 to hold our hair out of the way when we're being sick? Or who instinctively know when we need a glass of water and more painkillers? Those who don't have to be told what is going to leave us without spoons and those who go out of the way to make life "comfortable".

The members of the forum were then invited to vote on their favourite "spoon helper", and I am really touched that my support team received the most votes. If you have read this blog at all, then you know how grateful I am to so many people who make my not-so-easy life very manageable. But this was an opportunity to share how much I am helped and supported with the community which helps and supports me in so many other ways from afar. This is what I wrote:

There are so many people on my 'team' that I don't even know where to start. Who do I talk about?

Saturday, 6 August 2011

Photo Exhibit

Last month, I got a message on one of my forums from a young man who had sent out a survey. The photo series he created for his graduation exhibit is online. It is called "running on empty; living with an invisible illness" and is a reflection of life with Myalgic Encephalomyelitis.

It took me a while to decide to share this here, because after all, I hadn't come out and said "I have ME" here. But now that I have, I want to share these images with you.


The photos range from quite literal and obvious interpretations to subtle and haunting images. I identify with many of them. I think the one which speaks loudest to me is the one with the young girl in the playground laughing with her friend, while her legs are tied with tape that reads "fragile".

Anyway, if you want to know what it is like to live in my body, check out the photos. I think this young man did a tremendous job of evoking the feeling of living with ME.

Wednesday, 3 August 2011

Synchronicity and Paradoxes strike again

I had a wonderful session today with my therapist. We celebrated what we both feel is a major integration of several weeks, if not months, worth of work. It seems that Tree of Life, the film, acted as a catalyst for me. As I wrote earlier, it had a huge impact on me, and having now read some reviews, it seems it had the same effect on several critics as well. What I didn't realize was how synchronous it was for me to see it at this moment in my life, considering the journey I'm on and the work I've been doing in therapy.

As I mentioned in my earlier post, the film deals with the past that we carry with us. It shows snippets of life as we remember it - it is really, more than anything, a collection of memories and impressions. And in those impressions, I saw myself, I saw my parents, I saw my sister, I saw our children, and our cousins, grandparents and aunts and uncles, and I saw them all as children and as parents. The movie showed me my childhood and my son's childhood in such a way that it helped me see beyond the hurts and pains that fertilize each and every life.

Monday, 1 August 2011

What's in a Name?


For the first time, I'm tying these in my blog. I don't want to hide what I have anymore. I'm comfortable enough with the labels, I've had nothing but support, my insurance has been approved, and I have realized there is nothing for me to fear in openness.

So why all the names? Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, ME/CFS, CF Immuno Deficiency Syndrome... all of these have at one point or another been used as labels for the illness from which I suffer. The international medical community has yet to agree on what to call it, what it is, how it should be treated, and under what category to put it. There are a ton of politics, and plenty of conspiracy theories out there that go into detail on this. I can't waste my limited brainpower trying to figure them all out, especially when, no matter what you call it, I still have it.

I was prompted to write this post and open up further particularly because of a ground-breaking document that was published mid-July. There is now an official, international document, put together by the best minds in CFS/ME related studies from around the world that solidifies the definition of ME.