https://visiblepersoninvisibleproblem.blogspot.com/2018/11/november-2nd-2018-living-with-managing.h

January 6th, 2019 neurological change - it IS possible

Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard ...

Archive for June 2018

June 29th, 2018 A conversation with myself - what/how I'm doing NOW...


The July 4th holiday got me thinking, and I decided to share this -

I've told myself not to compare myself to others, and that I miss things I used to do, but it suddenly hit me - I compare myself to MYSELF... wow, this is so unfair to myself - I got sick, which really and truly was NOT, and never will be my fault.

SO, how am I doing, given my vertiginous migraine and vision disorders, and my Anxiety/PTSD - I've done SOMETHING on every single one of my worst days, and on my good days, yes, I'm definitely functional...
"that's a BIG deal, Tamar... stop punishing yourself for what you can't do... you DO:
laundry, grocery lists, put away groceries, empty and fill the dishwasher, wash pots, clean litter boxes, feed pets, water houseplants, cook a LOT, a few other random household tasks... 
AND play your flute a few minutes each day, colored pencil drawings, write, play the piano keyboard, walk the dog with Ron every day, post on your blog site FB page, listen to audio books... AND you're working in your therapies to improve..."

"yes, you need help with some things, and yes, there's a lot you don't do anymore, but look at all you DO do...AND you're trying really hard to work on your Anxiety/PTSD so you can do more... that IS doing your best... enough with the negative crap...".

I need to let myself off the hook... self-blame's a nasty bugger that apparently runs deep - distorted thinking of a truly rotten kind. And if I do? Then I say,
"OK, this thing happened - I got sick, and I'm gonna do the best I can with what I have today, including moving forward as much as is possible...".

Writing this piece made me realize
1) how repetitive my thoughts are when I ruminate, and
2) how negative my thinking gets

About July 4th - Ron and I will look at the flower show at the Park district, and if I'm up to it, we'll walk around the booths for a few minutes, before he takes me home.





Leave a comment

June 27th, 2018 On my journey, the one thing I know...


It's painful to remember... I miss the congregation choir... playing in a band... playing duets with friends... giving flute lessons... going to movies... family vacations... so many things I took for granted... Yes, I've learned not to take anything I have, that *I* feel is worth having, for granted...

My disorders have been thieves... PTSD is a thief - it wants to keep me STUCK... I want to know how far I can go... I want to know how much I can improve... what my stamina, endurance, energy level will be... will it eventually be more than it is now?  I don't know... no one does...

When I think about energy, and basic vestibular and vision skills, I often think about driving - a demanding, multi-sensory processing task... and I always come back to the same thought - "I don't want to get somewhere, and not be able to DO once I'm wherever "there" is..." I can't imagine having the capacity to do BOTH - driving safely and responsibly, AND doing... I remember once telling someone in the first month of my illness "well, I can't be driven everywhere..." - actually, yes, I can...  I'd rather be driven somewhere, and then be able to DO.

How far will my skills, my energy, my total capacity improve?? What can I do with drawing, my flute, my writing?? Is there something I haven't found out yet, that will be meaningful? 

I need to find out... trying is hard, anxiety provoking, effortful, sometimes exhausting...  some things won't work, but I remind myself that some things might, and that's good, and I have to find out. That's the ONE thing I DO know - that I have to find out. On my own timetable, with Christina's help. Otherwise, my migraine and vision disorders, and PTSD thieves are calling ALL the shots, and I can't let that happen.

2 Comments

June 21st, 2018 Letting go leaves room for possibility....


This may sound strange, but I decided to make a list of the big things it's unlikely I'll do again -

1) go to a movie in a movie theatre -
way too much sensory stimulation

2) go to a concert with my family - the kind with lights, etc. - ditto #1

3) travel - WAY too complicated

4) give private flute lessons - complex  - integrating a LOT of different elements - reading/playing sheet music, writing on sheet music, listening carefully in order to give feedback, looking back and forth between my student and the music

5) drive - very complex -possibly could literally operate a car, but add in everything I'd need to pay attention to in order to be a safe, responsible driver - the last time I drove was taking my daughters to and from a doctor appointment in Oct. 2011.

So, there's my list... it's actually easier to see it in front of me in words, it's surprisingly benign... clearing away unlikely goals leaves me asking - "OK, so what am I going to try, or maybe build on (i.e. drawing, writing)?"... I don't know... I'll have to experiment... what gives me a sense of accomplishment, adds quality to my life...


2 Comments

June 20th, 2018 Me and my friend PTSD (post-traumatic stress disorder)...


What I'm realizing is that in order to deal with Anxiety/PTSD, I have to try... this means doing what feels like walking right into the center of a storm... a storm of ALL my symptoms... it's like saying "OK, Anxiety, come get me, give me your best shot..." because trying stuff is the way to find out what my real parameters are... does it work, or not?  Sounds so simple... but it's SO hard.

I don't believe I could do this on my own... I believe anyone trying to deal with some of the really tough anxiety disorders - OCD, PTSD, agoraphobia to name a few - on their own, won't work... I know *I* need my psychiatrist, CBT therapist, AND meds... Dr. Mirsky says the meds are like body armor... I feel like I need that.

I've realized how much ENERGY I put into being on high alert ALL THE TIME, and how distorted my thinking can get... but letting go is incredibly hard... I told Dr. Mirsky I wanted to be DONE already... he said "I know... but you've been dealing with this for years (meaning, since I got sick), so it's gonna take time..."

I want to own my progress, but I feel like if I ease up a bit on my HIGH ALERT, and try something, then SOMETHING bad is gonna happen... "hello Anxiety" - that's how it works - PTSD tries to keep you STUCK - no risk, no PTSD Anxiety... over time, the idea is to make all my vision and vestibular symptoms less loaded... more benign... Dr. Mirsky believes I can do this... so does Christina... he says "you do too, THAT'S why you're here... to get help..."   One. Little. Step. at. a. time.

2 Comments

June 17th, 2018 A more basic kind of forgiveness...


Being able to write more is a good thing, I know, and I need to put this out there - maybe I'm not alone in feeling this -

I feel just plain bad sometimes - guilty - about having limitations... to put it more basically, I feel bad that I got sick - a chronic illness kind of sick... it's hard for me to admit this to myself... if I wasn't dealing with my disorders, I wouldn't have to ask for the help I DO need to ask for.

I can't drive, my normal activity level during a day or week - though better than it used to be - is so much less than a healthy person... I feel sometimes like I'm letting others down, making demands on them a healthy me wouldn't have to... I hate having to remind others of my limitations.

I know Christina (my new therapist) always says you have to try in order to know, but sometimes - particularly when it hasn't been an ordinary day - I feel like I DO know... I know I've done enough that one more thing isn't in the cards that day.

My vestibular/visual systems have to put in extra effort, which can be tiring, even draining... I don't want to get into brain fog/sensory overload territory... I often feel like I'm trying to find a balance between remaining hopeful, but also being realistic.

I'm learning that living MY life to the fullest has a different meaning now... so I need to forgive myself not just for mistakes, but simply for getting sick... the truth is, bad things happen.  Period... I didn't deserve this, nor is it my fault - I make myself remember 2 phrases I've heard a lot lately -

1) do the best you can in this moment

2) keep going

Leave a comment

June 13th, 2018 Still recovering...


I spoke with a friend who had a bad experience with a functional doctor, and I remembered an experience of my own... I don't remember who gave me her name, but I went to a functional nutritionist - one whose name I later found out was being given out by my new PCP (whom I like) because no one ever gave my PCP feedback... well, *I* did.

I saw this nutritionist after getting my MAV diagnosis - I called ahead to see if she treated people with migraine conditions, and was told "yes..." so off I went... I had one long consultation, and was told I could do an expensive blood test that would give me all the answers... and, yes, I fell for it.  What I FINALLY realize is that after everything I'd already BEEN  through, of COURSE I did it - what a relief to do ONE test, and then have this nutritionist who'd been recommended to me, give me answers!

During my follow up, she claimed I had "the worst case of leaky gut (I've) she'd ever seen..." and I left, with my husband, feeling TOTALLY overwhelmed... the one lucky thing was that I had an appointment with my then therapist, Dr. Glad, shortly after who said simply "she's telling you to make way too many changes too quickly, of course you're having trouble..." 

I stopped sending the nutritionist e-mails, just stopped everything.  The nutritionist had recommended extreme dietary changes, some of which seemed to have nothing to do with my migraine condition.  I was having significant GI problems as a result.  I went instead to a registered dietitian at Lake Forest Hospital, who explained some basics, such as reacting to foods with tannins, and/or fermentation (about 6 spices, yeast, MSG and its' "relatives," cheese, and vinegar to name a few), and started to recover.  

Unfortunately, due to my Anxiety/PTSD, I still, 5 1/2 years later, have to deal with getting my diet back to where I think I ultimately will stay... I have many real migraine food triggers, as well as some other health issues which restrict my diet... but with Christina's (CBT therapist) help, I hope to eventually make some changes in a gradual, methodical way... I've said it before, I'll say it again - it's been a long, long road...




Leave a comment

June 10th, 2018 Small successes....


I decided to share another "Positives List," giving examples of small successes... A reminder to myself, AND others, that these count -

1) unloading more of the dishwasher at a time, before sitting down to visually and vestibularly reorganize...

2) laying out my meds, and doing the math when I'm splitting pills to use them up...

3) talking while washing a pot...

4) putting away groceries with my new shoes on...

5) talking with my daughter while she's walking around, moving...

6) actually watching a music vid on YT instead of only listening...

7) editing, and adding numbers to this list

8) Helping my daughter with a sorting/organizing project

9) catching myself when I ruminate, and adjusting my thoughts, when something goes wrong - like when I gave myself a minor cut on my finger from a cat food can... Ruminating is a tough one, but Christina says that if I catch myself sooner than I might have before, it counts...

10) - putting together this list! 10 items :-)

Leave a comment

June 8th, 2018 Thinking back, and moving forward....


I saw an otoneurologist in July of 2012, and searching for him online now, I see that he'd only been in practice for 2 years, which may explain some things.

The positives - he correctly diagnosed that I still had BPPV -benign paroxysmal positional vertigo - despite having been treated by my former PT, Janet... he gave me a DVD with precise instructions on how to do the Epley maneuver... as he said, it took 2 weeks to correct.

He accurately diagnosed vertiginous migraine (VM), or migraine associated vertigo (MAV)... I had to do a full battery of tests (VERY difficult for me) because this diagnosis can only be reached by ruling out other vestibular problems.

The negatives - I know he meant well, but he put me on some supplements which turned out to be damaging to my liver, though thankfully my liver recovered - though full recovery took 9 months.

He said nothing about a migraine diet... there was a brief note at the bottom of the visit summary I received, but I had to find out on my own (with some help from my mother) about food triggers... I have a great many food triggers, and following a migraine diet helped me significantly.

another frustration - he said nothing to me about vision when I saw him...


Anyway, as I think back on my experience with this otoneurologist I saw, and other experiences I've written about in this blog, I have a choice to make - to hang on to anger, frustration, etc. about what didn't go right, OR I can think about what DID go right, and that what I have control over is to move forward, with the knowledge, and medical team I have now...

I have to make a conscious choice towards as much recovery as is possible for me.


Leave a comment

June 1st, 2018 another memory- an attempted outing gone wrong, & self-forgiveness


I thought about whether to write about this... this memory that I think I flashback on because it was an attempted outing with my daughters that turned into something painful... so here it is... from my first year of illness... possibly the Fall...

I remember going to the library with the girls to see a Harry Potter movie - don't remember which one - and struggling to watch... I finally gave up and went into the main part of the library... I think I got something out, but I don't remember what... I mostly remember sitting and feeling miserable, and feeling miserable and anxious about how I felt...  I was seeing Janet (PT)* at the time, who'd given me some lame advice that did NOT help... why did I stay with her as long as I did?  Because I trusted her, and didn't know what else to do... she presented herself as a knowledgeable expert - so ridiculous to think that now... but I was SO sick, and SO clueless about what was going on!

So, can I forgive myself for making mistakes?  Ultimately, it shouldn't have mattered that I made mistakes, the medical people I saw should have known better, or spoken up and acknowledged when they didn't... did Janet tell me to see someone I didn't?  I'm not sure... it's all fuzzy now... so I guess I need to forgive myself for my mistakes... "Yes, Tamar, you were VERY sick, and certainly not capable of making good decisions or choices..."  I hadn't learned yet how I would need to advocate for myself... it was all so complicated... if I'd had a severe, but known thing like a stroke or heart attack, what then?  But I didn't...

I know SO much better now... and am working with good people...
*NOTE- For the record, I do NOT believe every physical therapist is like Janet... there are some excellent ones...

Leave a comment
© 2014 Tamar Schwartz, Visible Person Invisible Problem (VPIP). Powered by Blogger.

Search

Swedish Greys - a WordPress theme from Nordic Themepark. Converted by LiteThemes.com.