I find it so hard to trust – to trust doctors and even to trust myself. I’m not sure which of these came first.

I understand that my long-term difficulties in working with doctors stem from the first four years of my illness when they didn’t believe me. It was easier to make me crazy – to apply all sorts of mind- and sanity- altering drugs – than explore the nature of the illness that zapped my strength and even my breath.

I think back to those early years (1989 to 1995) and the as the lost years – the years where I irredeemably lost part of myself. Though I don’t know why I use the word “irredeemably” as I feel even now, 29 years after the onset, I’m still trying to rescue the person I was then. The one who was called naive – the implication being too trusting. That’s not an issue now.

After about five years of knowing my current doctor, I finally feel a sense of cautious optimism. She can’t heal me, but she is more aware of the effect of her words – casually tossed out summaries like “the tests came back normal” – when my life has totally become derailed and I require rest before and after attempting most tasks.

For a change, I’m not thinking about running, about closing the door on her, but like a timid animal, just hanging around to see what scraps of insight I’ll be tossed.

She has referred me to a specialized program whose doctors have a better chance of understanding the course of my illness – if I can get on the waiting list. I hope this time not for an answer, but for the chance to be seen – to get some piece of the puzzle that will restore some part of  my quality of life back to me.

The last few months I’ve been able to return to the naturopath, after several years’ break due to lack of money for alternative healthcare, and she has given me so many things to try, so many reasons to hope. I’m undertaking a comprehensive dietary change (mostly the Wahls protocol combined with intermittent fasting – I’ll talk about that another day when I am of a “technical” mind).

After ten days of this radical change, I hoped I should be feeling a tiny bit better. Nothing has materialized. Instead I continue to feel the loss of my teaching career. My mind steers too easily to depression, and then to anxiety, and there’s little chance of sleeping.

I’ve doubled my Prozac to 40 mg as I’ve done as necessary in the past, but I still feel something there – something not right. It’s like a black hole in the center of my brain, and yet not that – this something has no mass. This something feels empty and aching. It feels like some fundamental piece of me is missing.

I feel this separateness acutely tonight, as though some of the toxic gluten or sugar filled a hole that is now exposed. I sense it and feel afraid of it. My body’s exhausted. I feel like I’m going crazy.

I know that no change can come quickly. The books tell me to expect up to 6 months, but it’s always the same when you’re slipping into a void. No one can throw you that fucking rope quickly enough.

I know I’ll survive this. After 29 years of surviving, I know I will. But I find myself questioning my every experience, and the quality of the fatigue, the depression. Am I faking it? My mind taking the usual circles, desperately wanting to live, afraid that it’s too late.

Afraid that no one will believe me – afraid I won’t believe myself.

And I never even had the chance to cry “wolf!”

with love,

me