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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Saturday, 22 March 2014

The Chronic aspect of Chronic Illness

I hope one day I can get off this see-saw.

I've been re-reading some of my older entries, and been quite surprised at how long I've been off work, how little has changed, and at the same time how much has changed. Some really strong themes going on, still... and probably forever.

In any case, I've been re-reading them because I've had a really rough month. I wanted to check, and yes, it's true, I've been in and out of my parents house now for about 18 months. I've been unable to function independently for over a year, and I don't like it.

I'm turning 40 this year. This is not what I thought I'd be doing at 40. I'm in the process of grieving again. My optimism is still intact, for sure, in a more cautious and tempered way, though. The events of the last couple of years are most definitely taking their toll.

I'd love to know if it's a common experience... I'm sure there are stages that people go through as the years of being chronically ill pass... Maybe one day I will feel up to looking it up. It would help me to know that others who are as affected by their illness go through similar patterns.

What I'm noticing is that the people around me... they forget. Maybe it's because they don't live in my body with it's constant reminders of just how sick I really am, because they can't feel my whole system jerk awake when there is a loud (at least to me) noise or a sudden change of any kind. And maybe it's because like everything else we learn it takes a lot of passes through the brain for the thought trace to really become fixed. And maybe it's because they actually have lives that don't revolve around me. Or maybe as time passes, they get used to me being the way I am - it becomes part of the routine - and they forget there's a reason behind it. And maybe, it's because I don't talk about it as much, and I haven't really written about it in a very long time (although now that I have a laptop that can get online again that may change). I try to not make me the only topic of conversation I can carry, and because while I am brutally honest if someone should ask (yes, I've gotten over that, and am quite happy to talk about it to just about anyone now), I am not interested in pity parties or sympathy or suggestions, or in causing my family the emotional pain of remembering just how hard it can be to live in my body.

I guess I'm getting to the chronic stage of chronic illness, for real now. And you know what? It sucks. It really really sucks. It sucks that I haven't felt truly refreshed in years. That's the honest truth of it. And I can't be positive about it at the moment, and that - that is something I can feel good about, because I'm being honest and genuine in my acceptance of the situation and my own feelings about it. I'm not trying to suppress my emotions and gloss them over with forced optimism.

Here's what it looks like right now: when I feel good physically, I feel excitement, and at the same time, I feel fear - that I will overdo it, that it won't last... and I'm learning, slowly, to enjoy the moment anyway, by allowing myself to feel both the fear and the joy of it. When I feel bad physically, and this is hard to admit, but it's true, I feel a certain emotional comfort in it, because it is so familiar now, and I also feel very very sad, and angry and frustrated, and again the fear. And when I have good accepting company in those moments, it helps - it really really helps - whether the company is online or in person. More often it is online, because I am so limited in what I can do in person.

I'm also pushing myself to attend events that are important to me, because right now, I feel like if I don't, my life will pass me by, and I will have spent a good chunk of it wishing I were doing things I'm not, and that's not healthy either. So for now, I'm pushing it. I figure I will swing along this pendulum for a few years yet until I get the hang of this.

That's another piece. I'm really starting to look at this as a permanent situation. Or at least a very very long term situation. I'm not sure I'd been truly honest with myself about that. And that's a big piece of the grief.

But you know what, I'm really proud of myself. I'm proud of myself for writing this out, and I'm proud of myself for being honest with myself, and for reaching out for help, and for getting closer and closer to truly accepting my reality. I'm also really proud of myself that I've been able to curb the perceived need to run away from my body and into my mind to a greater extent than ever before, and for acknowledging that there is more to be done here.

So yeah, it sucks. But it also doesn't suck!


  1. Bruce Campbell's courses and alumni groups have been enormously helpful to me in finding others to share my CFS experiences with. You might check them out.

  2. I understand...