September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

September 29th, 2018 Enough for now...


I'm conflicted re how CBT (cognitive behavioral therapy) fits in for me long term - I've gotten a lot out of it - I think I'll see how this month goes, rather than thinking about months ahead.

I also feel conflicted re vision therapy (VT) - this ISN'T about anxiety... it's about what I want to focus my energies on... Do I want to do less of it - say, twice a month? If I did that, would I try something new? Maybe first I'd see how it'd be to do less.

Congregation - there's one social group with my congregation that might work.  Sometimes a special event.

CBG - Chicago botanic Garden - seems like a good choice - it's an easy ride for me, & I can go to a familiar garden (it's really multiple gardens in one), or try something different if I choose to, with Ron, my aunt and uncle, or a friend... I used to often think "CBG is the only place I can go," but it's a wonderful place to go, so why not go regularly?

Phone calls - yes, this again - and I don't have to plan weeks ahead on this, though a bit of planning is good. Friends, relatives (a cousin, my parents, my aunt, my daughters).

A few special events because of Ron's involvement in organizations.

What I do at home. 

This picture actually looks pretty good - in fact it looks like plenty for me! Living with my invisible disorders, but not completely ruled by them.



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September 25th, 2018 "Test-driving" - doing


Rehab isn't an end, it's a means to an end.  I've been noticing myself doing little bits - and sometimes not so little -  more here and there, and doing is the way to build confidence.  I also know that I need to honor the energy capacity that I have right now.

DOING more means being more flexible with rehab. Skipping a session if something comes up that I want to DO.  My rehab is tiring, time consuming. Doing more phone - rather than in-person -  sessions of CBT (cognitive behavioral therapy).  I'd rather put my going-out energy towards other things - I have 3 opportunities for social events with Ron next week! It's very unusual for me to even be contemplating this, let alone DOING them.

Today turned into an at-home day, so I scheduled a needed haircut for tomorrow.  I was a bit nervous when I made the call.  Yes, this feels a bit scary, but it's time to start "test-driving" all my rehab work.




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September 24th, 2018 Giving space to anger


As September comes to an end, I've realized some things -

1) waking up - I'm angry that I can't wake up and be healthy. I woke up sick, but it doesn't work in reverse - I hate that.

2) energy - I miss having what I consider normal energy.  More than that, I'm angry about that.

3) my story - I can get help from multiple sources, but in the end, choices I make really are up to me.  This is MY story, I'm living in my body - no one else is.

4) let down - I'm really angry at the medical profession for letting me down. For not having answers soon enough, for fucking with my life - how DARE you!

5) Present - trying to make progress doesn't cancel out acknowledging where I'm at NOW. I have no idea where I'll be in 6 - or whatever number of months - but I DO know what I've lost.  I'm not just sad about it, I'm really, really angry!

6) Space for anger - Rehab always gives room for grief, but what about anger!  Anger isn't quiet, polite - it feels messy, agitated, NOISY - and it's THERE and I need to let it OUT!

7) meaning - I've said I want to improve my social life - and that's true - but what I ALSO need is meaning.  Cliche or not, my life needs to feel meaningful. Something that comes just out of me, out of the person I am.

This - my anger - isn't the feel good part of my story, but it's as real, necessary as every inch of progress. I don't think I can make ANY progress without allowing this ANGER.

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