July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for September 2018

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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September 23rd, 2018 Getting more connected...

So these are my ideas so far to try to do a bit more "out there" -

1) occasional phone calls with friends - some of whom are only online - I've gotten to know some terrific people!

2) have Ron help me look through our library newsletter, to see if there's a program the two of us can go to.

3) Actually schedule with Ron to go to the Chicago botanical garden - put it on the calendar.

4) See if there's a way for me to get involved in a Congregational club... I used to be on committees, and there might be something that would work for me.

I don't really need tons of stuff - I don't want to overwhelm myself, so one step at a time. I have a feeling starting is the hard part.

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September 20th, 2018 My Vision Therapy (VT) session...

Starting  - first, I updated Ann, and asked a couple of questions.  She always asks during the session, if I'm having symptoms - dizziness etc.

what I did -

1) I sat in a new chair for a while. Vestibular, spatial challenge.

2) Balance awareness week 2018 photo - that's me in the purple cap - I also have a red, and a blue cap - and my wonderful vision therapist, Ann (photo credit April)... Ann showed me the pic on her phone.

3) showed Ann my 7 days of logging what I'd done - 2 days for each 1/2 page of paper - a few words or a sentence - mostly written with thin tipped markers.

4) did some visual motor and spatial exercises with regular magic markers, some while I was talking, which was a challenge

5) did two more exercises, both involving drawing... One of which ended up with a silly looking mouse that I titled "cheese please" - that was challenging, but fun.

Done - when we were done I took home two sheets of paper - one with a large capital H, and one with a large B - and instructions on how to turn them into drawings.  I had told Ann I wanted to change up my drawing a little.

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September 19th, 2018 A hopeful realist, not a perfectionist...

"for us, there is only the trying.  The rest is not our business." T.S. Eliot

To me, this means what we own, what we have control over is trying, our own personal effort, not the aftermath.

Planning - I plan all the time... It's true that sometimes the planning itself is really difficult, but I think sometimes the anxiety for me is about the actual event.

Perfectionist - Anxiety makes me a perfectionist - I want to plan for every single possible contingency... this is impossible - there will always be something I could not have anticipated, and I just have to do the best I can.

Limited resource  - part of me wants to make every single moment absolutely the best it can be - since my energy is limited, I don't want to waste it. But I'm not always going to make the perfect choice about what to do, how to spend my time and that's okay... Whether you have 1 year, or 6 years or 60 years left, there will be wonderful, lousy and a whole lot of somewhere in between moments - that's life.

Limitations and obstacles - everyone has limitations, and everyone faces obstacles - if I look around, I'm going to find someone worse off than me, and someone better off - the reality is that I'm somewhere on the continuum, so I want to feel compassion for those less fortunate, and face whatever I have to face.

Rehab - Feldenkrais, vision therapy, and dealing with my Anxiety so that it doesn't inhibit my progress - was about getting better, which meant being symptom-free.  I'm not sure anymore... I believe that if I am trying, challenging myself - boring, stagnating doesn't feel good - then maybe I'll never be free of symptoms... I really don't know... Maybe the point is to minimize the really bad symptoms, the setbacks, but still be living, still be trying.

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September 17th, 2018 My 5 not so little insights...

1) challenging is okay - doing rehab is kind of like going to school - it never really gets easy because you are always challenging yourself - and that's OK.

2) planning - I forgot that if you're going to do things, there is planning involved - sometimes the planning is enjoyable, and sometimes it's an annoying pain in the butt.

3) yes, keep going - I remember realizing a while back that when I'm tired or frustrated or feeling down, that my anxiety gets triggered... What I just realized is that when my anxiety gets triggered, my knee-jerk reaction is to stop rehab, in particular vision therapy (VT) because it's challenging.

But the question isn't whether it's challenging, and the point isn't to focus on that crystal ball in the future and wonder how I will be in six months... the point is if I'm integrating my rehab into my current life - and the answer to that is yes, AND whether or not I am still making progress right now - and the answer to that is definitely "yes" - so that means keep going, and that includes VT.

4) something will work  - I'm not a statistician, but if you try a bunch of different things I'm pretty sure that the chances are pretty high that something - for any number of reasons - isn't going to work out, BUT I'm also pretty sure that there's also a really good chance that something will!

5) positivity = anxiety trigger - when I start to think positive, interestingly it always triggers my anxiety - that old negative thinking loop... So I have to say "okay, anxiety's happening, but that doesn't mean I stop."

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September 16th, 2018 I wish I had a blueprint...

I miss the "me" I used to be, what I used to be able to do, so much sometimes... like losing a special friend, I don't think my loss will ever be gone... What I hope is that the ache will lessen over time... I know I need to let myself feel this ache inside me when it comes, when it follows disappointment and frustration, or when it's simply there by itself...

What I also want to try to hold onto, are new good moments.. I have to hunt for those, track them down wherever they may be hiding... Rebuilding is an effort, but I have to do it... The clock keeps ticking, further and further away from the night I got sick, and that first miserable year afterwards... but I don't want to - CAN'T -  spend the rest of my life wishing for, looking for that old "me"...

I need to put together a new "me" that will have pieces of my past - so many memories, they are knitted into me... with whatever more - SOMETHING more - I find to fill the empty spaces... I want more - a few more pieces - than I've found so far... I want to stick around for a good many more years, so I HAVE to keep going, to create a fulfilling, meaningful new normal... I'm not sure how this is going to work, how I'm going to do it, I just know I have to.

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September 11th, 2018 Rebuilding, in bite size pieces...

I had a really bad night 7 years ago... I've done, and will continue for at least a few months, vision therapy... I also do Feldenkrais... I'm in the process of figuring out how to rebuild my life.

Realization #1 - bite size for some things is much better for me - writing's one of them... I hope you'll still follow my journey.

Realization #2 - thinking hard about where to put my efforts for social stuff - to feel connected with people... I used to love live theatre, but it's SO challenging on multiple levels... so going with Ron to a show makes less sense - and is one of the things I need to let go... he and I can go to the Chicago Botanic Gardens... I also need to figure out how we can be with friends.

Baby steps - baby steps to more of a social life - start with phone calls with people I care about.

Choices are difficult, but need to be made.  I'm grateful I have Christina to help me find my way in these difficult waters I'm traveling. And SO grateful for support from family and friends.

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September 7th, 2018 4 Challenges, or Hello, Worry Exposure!

Sometimes the challenges just kind of appear, sometimes they are planned -

Challenge #1 - yesterday Ron ended up coming back late from an errand, so I ended up walking Cosmo by myself!  On a VT day in a less... I talked Cosmo, who was a good boy :-) and what do you know, I did it!

Challenge #2 - we needed to have the plumber come out, and between the high holidays, and a few other things, I ended up having to deal with it on my own... We've had the same plumber for years now and he's a very nice guy and knows our house well, as does his assistant... I managed to find things to do while they were here, giving myself breaks to pace myself... I took a quick look at the bill so I would know what we were paying for, but I asked him to write the check out - he did this in front of me.

I definitely felt anxious, but I also feel good that I did both of these things.

Upcoming Challenges -
#1 - some cousins (Ron's side of the family) are hosting Erev Rosh Hashanah at their house - in Marengo - this is about 1 1/2 hours drive away... Since I got sick 7 years ago, I've literally been to their house once, 4 years ago for Rosh Hashanah... Going there is challenging because -
1) long drive there and back
2) in the evening
3) socializing is challenging for me now, because of my vision and vestibular disorders, and I feel RUSTY

4) my restricted diet
5) getting to bed a bit later than usual - even a 1/2 hour makes a difference for me, especially after doing something special.

Challenge #4 - Rosh Hashanah morning service the next day -
1) socializing - yeah, that again
2) LOTS of people  - the din of lots of voices/people talking
3) LOTS of sound - the choir is wonderful, but yeah, lots of sound - plus people, including the Rabbi, talking into a mic
4) doing this THE DAY AFTER an evening out!

This ALL definitely counts as worry exposure for me - in fact, I thought about only e-mailing Christina, but decided screw it - maybe this will help someone, if I post publicly... my PTSD Anxiety is a real thing... it sucks, but it's there... AND I realized that staying home because I'm scared seemed like a bad idea - the 2 Rosh Hashanah events both definitely count as special gatherings I don't want to miss, and it won't get any easier if I keep avoiding this stuff... in fact, I realized it's only going to get harder.

*I* can decide how much I talk, vs listening - listening is good... I ALSO realized that even though everything may not be perfect, perfect isn't required... I'm worried about all kinds of symptoms because of my vision and vestibular disorders, that I'll end up having a set-back.... BUT, I can take breaks, and maybe, just maybe I'll feel GOOD about myself for having done this... I'm thinking just going is a win for me... and I can rest afterwards... So, I'm anxious, but I'm going to do this stuff.

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September 5th, 2018 What's been missing - my self-confidence...

I started listening to Gabby Giffords memoir, written mainly by her husband Mark Kelly... Seeing how Gabby's mother Gloria cared for Gabby in the early weeks after the shooting, Mark says that he saw how optimism is a form of therapy.
Here's a definition of optimism -
"hopefulness and confidence about the future or the successful outcome of something."

Lately, I've been trying to find a balance between being realistic, and also being hopeful and optimistic... Christina (CBT/mental health therapist) sometimes plants the seed of an idea, that gets me thinking...

Independence - I sometimes take out the recycling or trash to the bins in our backyard.

I found a large laundry bag I can use to get laundry down to the basement if Ron is not around to carry a basket.

Figuring things out - Sometimes this means gaining understanding, which allows for better management... I think this is of value, because my goal is to figure out what my life can be even with my disorders... I don't think that can happen without understanding

Reading - this is a solitary activity, and with the audio feature of Google translate, and audio material from Audible, talking books, AND the fact that my husband Ron - who I'm going to presume will be around for a long time - can read a lot of material that I can't, improving my reading is no longer a top priority for me. 

Interestingly, using voice recognition to help me write this blog is in some ways a challenge - I'm hearing my own voice more, and tracking words differently because of how they appear on the screen, WITHOUT keyboarding.

Music - Private flute lessons - I told Christina that giving private flute lessons is a dream I need to let go. This makes me sad, and also makes me realize how very much letting go is a process, a process that takes time.

I also realize that music wasn't really one thing, for me it was a lot of pieces... So there may be a number of pieces, new pieces that I need... Thinking about what I value, the first thing that comes to mind is people - relationships - that's always been really important to me... So how will that happen?

1) Phone calls, which includes new member calls for Veda

2) somehow spending more time face-to-face with people
3) figuring out things I can do with my husband - one possibility - going to the Chicago botanic Gardens...

Creativity - I don't want to give up the new creative means of expression I found with drawing, so I'll see where that goes.

Previous keys to progress - Christina commented that I'd improved so much since first getting sick, and I've been thinking about what happened that spurred progress -
vision therapy
special glasses

Self-confidence - Time, patience, effort, perseverance, determination - I've always known I needed these... what hit me is that the opposite of PTSD anxiety and self-doubt, is self-confidence. So what will spur progress for me now? ME - the work I'm doing with Christina to rebuild my confidence, so that optimism can work for me.

I'm going to talk about all of this with Joyce (Feldenkrais), and Ann (vision therapy) - talk through where I want to put my efforts over the next 4 months, before I take a break...  and then see what feels right for me in 2019.


September 3rd, 2018 3 memories...

1) I asked Ron last night if he remembered taking me to my first neurologist appointment, the day after the night I got sick - he said he did "you could barely walk that day"

2) I remember that same doctor saying to Ron re BPPV (benign paroxysmal positional vertigo) which is what he said I had - and nothing else - that dealing with the crystals was like "balancing a bowling ball on the head of a pin" I remember trying to get that image in my head - I mean what did we know?!

Given what I now know about crystals and BPPV, that explanation has got to be one of the dumbest and strangest... That doctor didn't know what he was talking about!  See the Wikipedia link below for some decent information on BPPV.

3) I remember the first time I worked with a PT who I'd worked with - successfully I might add - after having hand surgery... I happened to mention to her about my balance/vertigo troubles and she said she could help me...

So there I was lying on a padded table, and she wanted me to turn my head to the side - I had literally not been moving my head from side to side for at least two months (I saw her either mid-November or the very beginning of December) - because it felt so bad... If I had been thinking straight, I would have realized the complete lack of movement is not a good idea, but I wasn't...

So I moved my head, and discovered to my dismay that it was REALLY difficult, and really painful... I told her it hurt, and she just said "I know"...

Despite the fact that she was a PT she did absolutely nothing to help me... When I finally (in May) found out about Joyce - my OT/Feldenkrais practitioner - and stopped working with the PT, that PT finally admitted that she didn't know what was going on.

I am not as I was pre-illness, but I HAVE improved since then!

NOTE: as I said in a previous post, I DO believe there are excellent PTs out there

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September 2nd, 2018 My reality - what I know...

Sometime in the next 2 weeks is when, 7 years ago, I got sick, and my life changed completely.  That is the simple truth  - I don't believe I should deny.  Emotionally, I've been very up and down lately. 
My thinking -

Music - I know I'm not going to be part of the musical world again as I once was - being part of a band, teaching private flute lessons, or getting together for duets...

Sound - Going to concerts is difficult for me; I've realized that my tolerance for loud sounds is relatively low - it doesn't need to be what people would consider "noise" - when I listen to music I never listen as loudly as I suspect most people do, and though I do listen to audio-books I have to take breaks. Ditto for movies, which I watch in small chunks, in the afternoon.

Outlook - I believe I'm fundamentally a hopeful, optimistic person, but I'm ALSO fundamentally a pragmatic realist... In terms of my personality, pragmatism has always balanced out how intense I am.

Predictability - I wrote once a while back about needing predictability in my life, and what I've realized is that predictability is not just about my PTSD anxiety.  Because of my disorders, it takes more effort for me to process certain things than it used to - I put more effort into systemic multitasking than I used to... Predictability and control allow me to move through my day without quite so much effort, which allows me to have energy when I need it - for example, for writing this blog.

Technology - it's okay for me to use the audio feature of Google translate, and the Dragon NaturallySpeaking software program I have on my computer. It helps me to write this blog.

Doing & Rest - I'm trying to be productive, & still need a break in the early afternoon - otherwise getting through the rest of the day is extremely difficult... I also find I get very tired about an hour before dinner, so I need to take a lot of small breaks... Doing things in the evening is something I reserve for special things because it's a real challenge, and it's very difficult for me to be up past 10 PM.

"Done" - I've written about being scared and I still feel that... I told Ron that I wished that I had a "done" light that went on the same way that our dishwasher and washing machines do, but for me the "done" is facing the frustration and disappointment of discovering my limitations.

4 months - Knowing that my plan might change, because I have no idea how the next 4 months will unfold, I see myself continuing on my therapies, with a week off now and then from vision therapy (VT).

Future - When my daughters are home from college for winter break, I will take a break, review where I am at, and see what feels right for me for 2019.  I don't want to give up on myself, but I also know I can't do rehab indefinitely.  I want to become more comfortable with the idea - instead of feeling frightened by it - of what my life will look like without rehab.instead of feeling frightened

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