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...

Archive for July 2016

July 23rd 2016 Challenges on my mind; mold removal, and kids moving on....

To listen: copy and paste into Google Translate, click the "speaker" icon.

When the Duraclean guy came and assessed our mold situation (due to the seepage), I couldn't take it all in.  That we needed to take out portions of the interior walls of our basement, have a major mold removal done, and rebuild.  The official term is mold remediation, which apparently is the fancy term for the whole process of getting rid of mold.  Then Leena and Cara helped me clear out an area in our laundry room where we'd gotten a LOT of water - that was STILL wet - like dripping wet, and smelled FOUL!  What had we been growing?!  Blech.... we took pics of a few things, but everything had to go.   Once the space was empty, I took an old mop handle, towel, and poured bleach on the floor.   I hadn't been able to sit down, and was starting to feel it, but I needed to do SOMEthing, and cleaning seemed like the obvious thing to do. 

At one point, when  I was carrying something upstairs, and amazed I did it - maintained my balance - I think I was powered by "I've GOT to get this disgustingness OUT of my house!".  But that moment when I was staring at the floor, and the wall behind it, it hit me that there was no way we could deal with the mold ourselves, AND no way we could do nothing.  So more upheaval is on the way; more disruption, more $$$ - yup, one more big, obnoxious project to deal with, and more dealing with contractors - before we can REALLY reclaim  our basement.    

As this all sinks in, I contemplate how we've spent the summer, and that my younger daughter will be going to college (as well as her older sister) in less than a month.  I realize, unlike the basement, this is supposed to happen - my daughters moving on.  I know she will still need me, as will her sister, but change is difficult.  I'm trying to figure out how I will spend my time.  I will write, I will set up our electric piano keyboard and experiment with that - should be interesting both spatially and visually (all those black and white stripes of keys).  I'll play my flute a bit every day, and I will listen to audio books.  Hopefully I will figure out something social I can do. 


There are multiple things that people typically do when their kids are in transition, and the nest is sometimes empty, but many of them are not within my reach.  So I'll see.  I need now and always to appreciate anything I CAN do.  When I was thinking about this post, I thought "this may all sound negative, but this is what my story is, to tell.".   I've realized, as I move through my days, that my main goal really is always to keep this in mind:  that whatever challenges come my way, I'll let myself feel the difficulty of it, but also face my challenges and keep moving.  My life will never be easy, and that's just going to have to be OK.

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July 17th 2016 Part 2 - My diary; posts from summer projects VPIP FB pg

To listen: copy and paste into Google Translate, click the "speaker" icon.

The Intro below is the same as for Part 1 - for those who want to see the beginning of this whole process, please read or listen to Part 1, dated June 18th 2016.

Introduction....

I put together all the posts I've done over the last few weeks. It's a diary of sorts, about construction, and my experience with my vestibular and vision disorders. You'll see that I did not edit the posts. My reasoning was threefold: 1) we're still unpacking, getting organized, and I didn't want to deal with the visual challenge of that much editing.
2) I thought that sharing this un-edited, less polished writing would give a better feel for how my writing reflects my experience... hopefully you'll get the flavor of what it's been like.
3) I wanted to see for myself what it was like to listen to the whole thing in one chunk, and thought I'd share it.

I was struck, when listening to my posts as one continuous narrative, the continual need to find a balance between planning, and staying in the moment, taking it one day, often one event, at a time.

Anyway, I'm posting this in two parts - pre July 4th and post July 4th.... Thanks for taking a look :-)

Part 2 ---- Summer 2016 home projects....

Hmmm.... waiting to hear from Tom (contractor) or somebody... left a message that we still need half our house back - including the laundry room.... gonna see Joyce (FT) today... trying to do my FT home therapy bc I've found if I don't, it's like missing meds, but hard to do when my cognitive processing is cluttered, fuzzy.... one day at a time... yup, keep saying that... it's Tues. right ? :-)


I want to write, but still don't have my regular set-up, so I'm doing these mini posts....
finally talked to Tom this a.m. - told him I needed regular updates, and that I knew he wouldn't understand but that this whole situation is very difficult for me bc my vestibular and vision disorders....
there are parts of the house that are normal, if you don't look under a table or dresser... there's a mound of stuff and then some in the garage, our dining room table is doubling as a computer table... any change requires adjustment on my part - whether vestibular or visual (or both).... I'm taking lots of breaks, needing a lot of sleep - telling myself that taking care of myself is important, not selfish... when I'm really tired, I just listen to music - can't deal with processing a story or narrative.

Much harder to get away from noise... even without workers here, since we're living on one floor now, if the TV is on, I often hear it (unless I'm in the bathroom ;-) ... I wonder how much adjustment there will be to the new visuals of the basement - new floor, wall paneling, and a few furniture changes... well, I'll find out... if not by the end of this week, then beginning of next week....  I can do this....


Progress... I don't have to go behind plastic to get to cabinets in the laundry room - that was very weird - and I have a washer and dryer again...
Had to ask worker to move washer - which meant talking and moving with everything in a slightly different place... different spatial and visual lines... always something new, everything is an adventure...
Plumber coming tomorrow... we'll see what gets moved back into place tomorrow...

Ironic - I remember Perma Seal asking "were you planning on remodeling your basement?"....   "Planning" would be the key word here... No... but apparently, you're going to tear up our basement, sooooo....
anyway, looks like no work will be done today... the plus side - no worker noise, the down side - another weekend of weirdness upstairs... hopefully next week we'll actually get DONE...
I know life is full of unplanned stuff... my disorders are certainly one of those, and dealing with this whole project while living with my vestibular and vision stuff is challenging... but I have no choice... when I think too far ahead - even actually to next week - it's easy to feel overloaded - so I back up and say "OK, what's happening today..."

7-12-16
so the good news is that I'm feeling a bit better, grounded, having been home for a week and doing my Feldenkrais home therapy... not doing my VT yet...
Plumber's here today.... have to contain the pets again.... poor things don't understand... but gotta keep them safe...

Day 10 at home... quiet today, no worker since it's Sun... kitchen floor looks good, but still figuring it out re vestibular/sensory issues.... really looking forward to getting my regular computer set up, and DR eating regular again... too many eye gaze switches right now (an issue re my vision disorder)... wonder if going back will be an adjustment, or just "Oh, I remember this!"....
Workers are on their way this a.m.... will everything actually get finished this week??? Here's hoping...

Hopefully several workers are gonna show up today... the plastic that covered everything is gone - a good sign.... have I mentioned I'm really ready to be done?!  I think the girls and pets are too.... I know, I know - this too shall pass.... much more definitive than my disorders...
YAY - workers are actually here! :-)

Finally had a chance to touch base with my psychologist... I do recommend having a professional to talk to occasionally - ask for a sliding scale if you have to - I think it's worth it!  He and I discussed finding positive things to occupy my mind... really important - I think of it as making sure the negative thoughts - the weeds - don't have space!

I'll be noodling around on an electric piano keyboard when our basement is finally done... and thinking about posting vids here of me doing a bit of playing.... gotta think about this... challenges that actually feel positive!
We had to empty out most of our basement... some of it's in mounds in the middle of two rooms, and a lot is in our garage.... still is... SO tired of this... our contractor was apparently in the ER today... so waiting to hear what's up... he's a lousy communicator... UGH!

ugh, so ready for this whole thing to be OVER.... contractor didn't show up and texted Ron that he was in the ER all day... so NOW what.... UGH... this is the fourth week of this....

I've learned that any change, anything new - whether large or small, or subtle - challenges me on a vestibular and/or visual level...  and there are limits to how much I can deal with, without feeling it, so when I can, I have to limit exposure to anything that's a challenge, even if it's a known challenge ....

It occurred to me that I have no control over what's going on with our contractor, and no choice about dealing with the consequences - at least none I'm aware of right now - so I have to deal with this... one way or another, we'll be done, and in the meantime, I need to do what I can to maintain my health....

On a positive note, Tom (contractor) texted us re his new injury, and assured us that workers are on the way today, and are aware that we need to get the job done... here's hoping it will happen today!

7-16-16
We managed to do enough to make it pet friendly in our basement... course we'll see what they discover anyway - since I can't THINK like a cat or dog :-)....
Our basement keeps changing as we slowly unpack and organize, so my brain constantly is figuring out new stuff... I'm definitely going thru adjustment...  Makes for very interesting and weird dreams - so strange how we rehash and process stuff in our sleep...
think we're gonna hire a prof. cleaning company to deal with the mold... yuck... sigh.... necessary... there's a couple rooms in particular that definitely need it... hopefully by the end of next week we'll be moved in.. we'll see... what a production!

7-17-16
Slowly putting things in order, in bits and pieces.... e-mailed Tom about a few loose ends...



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July 17th 2016 Part 1 My diary; posts from summer projects VPIP FB pg

To listen: copy and paste into Google Translate, click the "speaker" icon.

Introduction....

I put together all the posts I've done over the last few weeks. It's a diary of sorts, about construction, and my experience with my vestibular and vision disorders. You'll see that I did not edit the posts. My reasoning was threefold: 1) we're still unpacking, getting organized, and I didn't want to deal with the visual challenge of that much editing.
2) I thought that sharing this un-edited, less polished writing would give a better feel for how my writing reflects my experience... hopefully you'll get the flavor of what it's been like.
3) I wanted to see for myself what it was like to listen to the whole thing in one chunk, and thought I'd share it.

I was struck, when listening to my posts as one continuous narrative, the continual need to find a balance between planning, and staying in the moment, taking it one day, often one event, at a time.

Anyway, I'm posting this in two parts - pre July 4th and post July 4th.... Thanks for taking a look :-)

Part 1 Summer Home Projects 2016
June 18th
Scoped out the hotel today... workable but definitely some challenges... also got a mini lesson from Cara on my mini iPad... very visually challenging using that to be online - better than being out of the loop, but hopefully won't have to use it for more than a day on either end... over the next few days, may not respond to messages quickly if you comment on a blog (hoping to post one soon), but I won't disappear...  Keeping my eyes on when all of this is done.... and there are improvements - many bags, boxes, hours of effort, movers, etc. later.... and of course a few dollars ;-)

June 23rd
(an e-mail sent to my parents)
We're at Res. Inn.... the work to prep the basement was completed today, and we're going in two of us today, two tomorrow, to deal with the upstairs - safeguarding stuff re vibrations.  Got the permit (yay!) so hopefully all will go according to plan and PS will do their thing on Mon and Tues.... then the kitchen floor gets done and we go home on the 1st... we'll try to get stuff back in place upstairs in bits before we go home...
still getting organized/oriented at RI...

June 28th 2016
Short update on home project challenges...
A new blog post will be coming when major house projects are further along, and challenging computer set-up is no longer an issue... check my VPIP FB page for mini updates and some music ... Thanks for understanding :-)

day number 4 in hotel... this week major work in house, then one more week with us in the house... my body's ready for this to be done... but one day, one event at a time... pacing, telling myself I can do it..

June 27th - day 5... when I'm dealing with a lot, JD is my go to music.... two crews at the house today... hopefully all the work went well... Wed. we start putting stuff back so it's livable... thanks for all the messages of support!!!

June 28th Day 6 ... work is progressing... I'll be at the house later to check on things... if OK then Wed. and Thurs we get some stuff in order enuf to have it livable for us on Fri... still weird computer set up, so no blog till next week...

June 28th - Perma Seal/water project is done, concrete in basement needs to dry so work downstairs will be done next week... Kitchen (and small bathroom - same flooring) will be done on Fri. so we can GO HOME.... house is pretty chaotic right now but Ron and Leena will start getting things in shape today, and Cara and I will do some Thurs. a.m... house will still be weird next week, but I'd still rather be home... one step at a time, one day at a time....


6- 30 - 16
Day 8 - Making sure everything is on track for us to be home on Fri... getting organized to pack up and get home...  The cognitive processing of all of this gets difficult, so I'll take it slow, ..try to pace myself....one piece at a time... it'll still be good to be home... wonder how the pets will behave (?).... don't know if the work will be finished next week, or if it'll move into 2 weeks... guess we'll see...  May post on Fri... maybe not till Sat...

7-1-16
Day 1 at home, still construction...
today was NUTS... but we're home....water drainage, kitchen and bathroom done - relief! Basement next week... hopefully will get done... so stuff is still kind of everywhere - garage, upstairs, etc.... but it's good to be home... still weird computer set up... not looking forward to putting basement back together, but one step at a time....

Good to be home... getting used to new floor (don't win the ugliest, most worn out floor anymore!), looks good but very diff't to walk on and look at... had to have the plumber come out and will have to come back... funny the things you discover when work gets done... well, our house is 60 yrs old...
glad today and tomorrow will be calm at home, I NEED that... SO exhausted yesterday... still need some recovery time..

Day 3 - Ron asked if I'd rather be home or the hotel... I said home, but that it's a lot of work to deal with learning the kitchen floor - didn't expect that... and my computer set up is a bit better, but still diff't, still something to learn, the house is very cluttered, so hard to navigate... so yes, better to be here, but I have to pace myself better - yesterday was exhausting.... figuring stuff out... it'll be diff't again tho nice to have the girls home... then there'll be workers in the house... but I'm getting ahead of myself :-).... right now, I've just got to pace myself and move thru today...

July 5th
went to the local July 4th flower show with Ron, took a break and walked around the booths a bit... really paying attn to pacing myself... I'm home now and Ron is off to the parade - with West Deerfield Township, as a Trustee.... I'm grateful I was able to do an outing... and NO workers, or service people today...

This is a very short piece - a notice really...if you saw my last 2 or 3 posts, you know we're doing a big home project which involved major construction and going to a hotel... we're home now but I found many challenges with so much new visual and vestibular info... so pls check my VPIP FB page for updates.... 


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