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 October 2019

October 26, 2019 - Acceptance, and perspective

By | Published Saturday, October 26, 2019



During the last eight years, I've had multiple consultations with medical professionals, and have been tested, all in a quest for answers, for diagnoses. Fortunately, I've gotten lots of info. Treatment for these diagnoses has been both meds, and various therapies. Take a look at "My story in a nutshell".

One of my diagnoses is convergence insufficiency - a vision disorder, diagnosed by my developmental optometrist, Dr. Margolis. I just recently saw him for a progress report, and he could see from how I handled his examination of me, that though I'm by no means back at square one, there has been regression from my recent setback. This didn't surprise me.

He's determined to try to still find ways to help me. He wants to try using yoke prism lenses to see if that helps my peripheral vision. I gave back the green syntonic filter lens glasses. The benefit of the green unfortunately fights against visual distortion that comes with wearing the glasses, so I don't have a net gain. He agreed this was unacceptable, but isn't giving up yet. I'll see when I have my next vision therapy session in November, what I do with Ann.
  
I next see Dr. Margolis in January, so I'll see how the next two months in vision therapy unfold.  I want to remain open  - in general, not just in VT - to possibility, to an opportunity that may present itself, that I have the capacity to explore.

But there's this sense in me, this inner voice that is saying "yes, see how these two months go... but don't be waiting on these two months like something amazing is going to happen... it's time for acceptance…". I know there comes a time when I need to say to my medical team "Enough. It's time for maintenance, and for me to see what my life looks like."  A time for me to accept, and make the best of the circumstances I have.

So I'm asking myself what I know, and what I have, right now -
Some realities -
I have disabilities - that's simply a fact, and not one that's going to change.

I need to pace myself - depending on how I'm doing, the pacing may vary – right now I have to be more careful than when I am not recovering from a setback. But I always, always have to pace myself.

I have to limit my screen time – this is difficult, and can be really frustrating in this high-tech era, but is very necessary.

Some positives -
Take pleasure in my pets,

be grateful for being able to play simply listening to myself on my flute, and on our piano keyboard.

Enjoy having houseplants - here's a picture of our aloe plant, much happier in its' new pot :-)


Be grateful I have so much audio material I can listen to.

Enjoy, and be grateful for every phone call with friends or family. And any time I can spend in person with friends or family.

Be grateful that I am physically able enough to do enough household management that Ron and I can stay in our house.

Certainly grateful that we can manage our finances sufficiently to be able to stay in our house.

We got a postcard from my daughter who is in Scotland. If it had been any longer, or her handwriting not as neat, I could not have read it myself. I had to read it more than once, but I was able to.

When I was done, I thought to myself how much perspective matters. I can be angry and frustrated at how little I can read, or I can be grateful in the moment, that I was able to read her postcard. Yes, I needed to take a break after reading it, but I was able to read it myself.



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October 19, 2019 Tiny is powerful... it all matters

By | Published Saturday, October 19, 2019




To state the obvious, experiencing vertigo doesn't make you feel safe.  Because of my recent setback, I've thought about the night I got sick. I think whenever things don't go well, I think about that. I think the opposite of feeling safe is feeling in control.

I've also thought about the losses I've had. Having a chronic illness means, for many, some loss. I'm no exception to that. Part of my loss has been a loss of connection, community. Not just the musical activities in which I participated, but also being more active with our congregation.

So how do I solve these problems? I believe the control answer comes from showing up for my therapies, and doing my brain retraining home therapy. Small bits really do matter. Baby steps. And when I say baby steps, I really mean baby steps - I found a video that does a pretty good job explaining the power of the tiny.
Here's a link - https://www.youtube.com/watch?v=VHkOFs67d9A 


So what do I do that I care about? Continuing to shine a light on invisible disorders. I can do this through my writing. I can also do this by calling new members monthly for the vestibular disorders Association – Veda.

Many times I only leave a message, but I always follow up with an email. Sometimes I receive a reply, and occasionally I speak to someone. They are always very appreciative.

I don't know what else I will find, if anything. I do know that the two things I just described – my writing, and what I do for Veda – both matter.

Community can come from a number of places. I have family, and I want to stay connected - that means attending family gatherings whenever possible, and phone calls. I also need to build on my phone calls to friends. Whenever I do connect with someone, it's a positive for both of us.

I may not always get it exactly right, when I do, when I try things. I'm not going to be able to control everything all the time, which may result in a setback. But I need to keep going. Remember that the keeping going is where I really build my strength. The coming back after a setback.


Giving myself reminders – concrete reminders of what has worked, what I've accomplished - is important. So, even while dealing with this setback - for which recovery is not an exactly straight line - 

here's a list of what I've done -

Went to a BIG furniture store with Ron and Leena to order new dining room chairs.

Did some texting with my daughters.

Went to a morning Yom Kippur service.

Walked the dog by myself.

With a shorter hair cut, I'm going for haircuts every 4 weeks.

Writing and editing this piece, in small bits.

Showed up for vision therapy. Ann said she didn't think I'd regressed from my setback, which was encouraging.

Trying out a new step in syntonics - using a special green filter at home. Here's a picture.


Started up vision therapy brain retraining at home again. A little bit, to get back on track.

Picked out the first part of the song do re mi from the sound of music, on our piano keyboard.

Taking breaks – even a minute or two makes a difference, just like the baby steps of doing makes a difference. My breaks are a time to really focus on doing good breathing.

Do something each day that matters, that I care about, that makes me feel connected. It doesn't have to be big. Tiny can be powerful.



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October 13, 2019 An informed patient, & time...

By | Published Sunday, October 13, 2019



This picture makes me think of a slow, gradual journey... 

My gastroenterologist diagnosed my irritable bowel syndrome - IBS - about two and a half years ago. I remember he explained about how the intestinal nervous system gets confused, and involved when there's migraine issues. IBS is, apparently, a common diagnosis when migraine conditions are present. This info was very helpful. I can have only mild migraine symptoms, and also have distinct IBS symptoms (sometimes in the moment, sometimes delayed).

My doctor prescribed IBGard. Unfortunately, he didn't give me any directions on how to take it. I wish I had asked more questions at the time. I have now, finally, educated myself by looking at the IBgard site, which thought somewhat repetitive, is also pretty informative. I listened, and now understand much more about IBS, how IBGard works, and how to use it.

It's going to take time for me to recover - at least a few weeks. Hopefully not more than that. If I'm not seeing definite improvement in a month, I'll contact my doctor, but  I know it's too soon now. One of the main ingredients in healing, is time. It's so hard to be patient. I hate that setbacks feel like they hit so suddenly, but recovery is always a gradual process. But that's how it is.


One day at a time.
One day at a time... keep breathing... take care of myself.... one day at a time.

Note: please consult your doctor for a diagnosis, and for treatment. What I'm sharing here is not meant to take the place of medical advice.

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October 10, 2019 Pacing, meds, & one day at a time

By | Published Thursday, October 10, 2019


I was asked by several people "what happened? why this setback?". It's a fair question, since I was doing pretty well. Here's my answer -

1) Pacing - I've heard all my therapists say "you're really good at managing, you have good self-awareness" etc., etc. I appreciate the vote of confidence, but the reality is this - I don't ALWAYS get it right. As I said to my older daughter, pacing isn't fun. It usually means missing out on something.

I went to morning Rosh Hashanah services last week, did a little bit on the computer, and did a 1 1/2 hours each way trip out to Marengo to see family for a Rosh Hashanah gathering, including some out-of-town family. If I'm being honest, I didn't pace myself well enough.

The following day, I went to the Deerfield optimist installation dinner, to support my husband being installed for his final year as president of the club. I wanted to be there, but going to an evening event the day after Rosh Hashanah was a lot for me.

It's really hard sometimes to pace myself, because I want to DO, to feel normal.  But I need to not beat myself up for making mistakes re my pacing, especially since I pay for it when I don't pace myself sufficiently, which sucks. Pacing ALWAYS matters... taking breaks... even when I feel like I'm doing OK, it's good to stop and say "do I need a break, even a couple minutes?".


Was there more to this than my pacing?
2) Meds - the last time I had an irritable bowel syndrome (IBS) flare up, my body responded well with the med I can take as needed. This time I wasn't responding as well.  I remembered I wasn't on any other meds when my IBS was first diagnosed.

I also remembered having stomach trouble when I tried to go up in dosage on one of my meds, and had needed to go down. Maybe I needed to go down again. For various  reasons, I'm on more than one antidepressant, so lowering the dosage of one seemed safe.

So I e-mailed my psychiatrist, was polite and gave concrete information, & got the OK to lower the dosage of that one med some more, to help my IBS.

I also need to always bring my meds - especially the as-needed meds - when I go on an outing. That goes double if it's challenging.

3) Diet - my diet matters, and despite trying to communicate with the coordinator of the optimist dinner, my food was not prepared exactly as I have requested. Lesson learned - try really hard, on the rare occasions I eat in a restaurant, to speak directly with food provider/chef.

4) glasses - switching back and forth between my distance and near glasses can be annoying. Switching may even challenge me enough that I need to take a break, but I need to wear them. Given my sensitivity, even a few minutes in the kitchen without my glasses makes a difference.  My glasses - all three of them - help me. Chances are if I feel like I need a break, it's not because of the glasses.

Final thoughts –
One day at a time.
Give myself credit for problem-solving.
Remember self compassion, which sometimes means self forgiveness - I can make mistakes (pacing is so hard sometimes - I mean who DOES want to miss out?).
Try to be in the moment, in the here and now.
Notice ANY subtle positive change, not just negatives.


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October 5, 2019 Thoughts on a rough patch...

By | Published Saturday, October 5, 2019



I seem to be going through a rough patch, so I found a piece I wrote back in 2015 about pacing (see the link below). Interestingly, though I've tweaked some things along the way, much of what I said in that piece still holds true.

Here are some things I'm reminding myself of -
Pacing matters, always, AND is a positive, because it's a big part of what gets me through rough patches. It's part of that all important thing called self-care. Sometimes I have to pace myself more than others, that's reality.

Speaking of reality, I didn't choose these disorders, but they are real. I don't like them, not at all, but they're real, and so are my symptoms.

Sometimes I know why I have a rough patch, sometimes not. Often it's a combo of factors. The reasons have nothing to do with it being my fault, that I didn't manage myself as well as I should have. Rough patches happen. Period.

I've gotten through every single rough patch I've had, every tough day.  Someone told me recently to write about what I can do. At first I thought "OK, I'll do that." And then I thought "but what CAN I do that's worth writing about?"

Then I realized, like every other person out there managing some kind of invisible, or not, chronic illness (or maybe more than one), that the managing is what we're doing.

We're doing our best to meet responsibilities, and enjoy life in simple, but worthwhile ways.
Like my cat Molly interrupting my few minutes of flute playing when she jumps on my lap, and lays down on my flute case.
Grateful my daughter may be able to sew patches on my jeans.
Grateful that Ron is able to run all our errands, be a set of functionally healthy eyes to look at what I'm unable to, and hug me.
Grateful that I can DO self-care, including but not limited to all the cooking I have to do for my diet.
Enjoy the beauty of a tree changing colors, that I notice on a walk with Ron and Cosmo.
  
https://visiblepersoninvisibleproblem.blogspot.com/2015/09/september-27th-2015-pacing-its-about.html


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September 27th 2015 Pacing - it's about management but also moving forward

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I've used the word "pacing" in my writing, and in conversation with people, but I'm not sure how well people understand what I mean.  I like the word "pacing".  Pacing literally has to do with "the rate of movement, or activity";  that's actually what it says on Dictionary.com, although there are a number of definitions.  To me, what this definition means is that pacing is about timing, about how the pieces of my days fit together.  It's become a really basic management/coping skill for me.

How I pace myself depends on a number of factors.  
Getting enough rest is vital - sleep for me is like medicine.  
Which activities I mix with what other activities.  
t's about how long I do any one thing before I do something else, which depends on what the activities are.  

 If I'm on the computer, what am I doing?  How visually challenging is it?  What is the cognitive processing involved?  It usually ends up being a mixture, and I have to have some self-awareness so I know when to take a break.  

 Some household chores are more spatially challenging than others.  I also pace my therapy days differently, especially the first couple of hours after my sessions.  Figuring out pacing would be different for someone else, not just because each person's activities vary, but because we don't all have identical problems or bodies - and everyone's sensory system is different. 

My vision disorder factors into what I do at least as much as my MAV does - I really can't separate the visual from the vestibular.  On a good visual stamina day, I may be able to do a bit more on the computer, though I still need to take breaks.  I may try to read a little bit.  I'm talking about sentences here, not full pages - though it also depends on the format - lengthy sentences on a standard piece of paper are harder than short sentences.  The level of challenge also depends on the font size and style, the contrast of the paper vs. the print itself, and the ideas or content conveyed.    

When I take breaks, particularly from visually challenging tasks, I try to do tasks that involve much more gross motor skills, so that I'm moving my body and the visual experience is much different.  Sometimes I may just sit for a few minutes, and pay attention to my breathing, or if I walk around, I'll notice how I'm moving.  If something doesn't feel good or quite right, I may try to focus on something else.  Focusing on or noticing what doesn't feel good may initially be a good idea, so that I can change or adjust something, but after a point I find it isn't helpful.  Rather than becoming sort of hyper focused on what doesn't feel good, I want to do what I can to help myself in the moment and then move on.

When I think about pacing, I take into consideration if I'll be going out, which I've been trying to do a bit more of lately, and if so what the outing involves.  Am I going someplace familiar? 
Will there be a lot of people, and if so will I know them?  
What can I anticipate in terms of cognitive processing?  
What time of day will I be out?  
Do I need to make arrangements for food?  
How much travel time by car will there be?  
Once there, will I stay put, or move around?  
These aren't new questions for me, and there are often other questions or issues in the mix.  Every situation is different, and I always consider the costs and benefits of pushing my boundaries. 

If an outing is really challenging I think about not just the day but the entire week.  When I attended a morning Rosh Hashanah (Jewish New Year) morning service, and then went out to family in Marengo (a one and a half hour car ride each way), which I hadn't done since getting sick, I stayed off the computer completely.  What time I had at home was very low key.  Sometimes  - like with Marengo - I make decisions really close to when an event will happen, though I will have done some planning and thinking leading up to the event.  

 I talked with Ron beforehand, and we agreed on the time we'd leave - which was based on when I needed to be home, and my daughters understood this as well.  I made my decision very close to when we left - it isn't always possible to make a decision very close to an event, but when it is, I take advantage of it.  I made management/coping decisions throughout the visit, but family members seemed truly appreciative of the effort I'd made, which made me feel good about having done it.

I don't like that I have to incorporate pacing into my day - just listening to what I've written reminds me that one reason I get tired is because of the mental energy that pacing and planning involves.  I'm used to having to do it, but it's frustrating to have to pace myself, to have to stop - sometimes it feels like a lot of bits and pieces - like all the bits and pieces I have to work on in rehab.  

 But in the end, pacing is helpful.  I don't like neurological fatigue, the sense that I'm just done, and can't process anything else. It's very different - to me anyway - from physical fatigue, and from mental fatigue as well.  If I pace myself, hopefully I avoid feeling really drained, like I need to shut down, and I can stop when I DO feel the "shut down" feeling creeping in. 

I want, as much as possible, to push my boundaries a bit at a time.  So as I pace myself, I also say "OK, what's the worst that can happen?" and I realized recently that I've already been down that worst road.  I DON'T want to go down that road again, but I'm telling myself I won't.  I have SO much more info, I understand my situation, I DO have coping skills.  

 Dr. Glad (former therapist) said to me recently that not only was it really good that I'm pushing out my boundaries, but that wanting to do something can be powerful - it's not magic, but it can be that extra motivator that helps you to make something really hard happen.  So I'm always looking for that sweet spot (this is a term Dr. Glad used) - pacing but also pushing my boundaries out a bit so I can move forward, without over-doing it and setting myself back too far.  I definitely don't always get it right - I think that would be impossible.  I know rehab isn't a straight line, and even when I have to recover, I remind myself that my brain has absorbed and learned something.


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