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...

December 2nd 2016 Acceptance isn't giving up, or giving in...

By | Published Friday, December 2, 2016

To listen: copy & paste into Google Translate- this also translates to other languages - and click the "speaker" icon.

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I've been thinking about this piece for a while, and decided it was time to put it out there.  These thoughts, like a lot of things, are a work in progress.  This past Fall has brought changes, and frustration, and finally, contemplation. I've been adjusting to my daughters being in college.  I'm proud of them, but it's also meant thinking about my limitations, which is frustrating.  Anyone who knows me knows that I'm concerned about the general election we just had in the U.S.  However, there's a limit to what I can do, how involved I can be politically.  I'm also part of a group that worked on a WHO petition for vestibular patients, but again, there's a limit to how much I can participate in this project. 

I've talked about the importance of using Facebook, but my disorders impact my activity.  I'm very limited re my reading.   Really reading - meaning not copying and pasting text into Google Translate so I can also listen - is a big challenge.  It's one thing to see words - almost like an image, but quite another to actually process the meaning.  If I try to read too many headlines, or comments on FB, without copying and pasting into Google Translate, I get overloaded.  Combining the two systems - auditory and visual - makes comprehension easier, but copying and pasting headlines into GT is very impractical.  Re comments, or articles for that matter, if I copy and paste too much into GT, there's too much eye gaze switching, too much convergence on small targets, and I get overloaded. 

Sensory overload doesn't feel good, and if I don't pay attention, can lead to migraine-like symptoms.  On the plus side, I usually can tell when I'm heading towards overload.  So, I have to back off.  I have to pace myself.  Taking a few minutes here and there throughout my day is, I remind myself, better than feeling lousy and needing to chill out and do basically nothing for maybe an hour, while my system gets reorganized.  Yes, backing off means I feel better in terms of symptoms, but also somewhat less connected.  Then it's time to do writing that doesn't necessarily get published, or post on the Vestibular Support Group simply to get something off my chest.  I remind myself that I'm grateful for what I AM able to do online, and then find a good audio book that gets me out of my own head, and life.


All of this also means I've been thinking about what it means to accept my situation, without feeling like I'm giving up.  I need to continue to communicate with my therapists - my OT and VT - so they understand exactly what my struggles are, and can work with me.  But I also think I need to sit back and say "OK, this is my life, these disorders are part of me.".  I have a migraine condition that I mainly experience as light and sound sensitivity.  I have a vision disorder that impacts my life, realistically, in myriad ways.  I don't think they define who I am, but I DO think accepting that I have these disorders, rather than fighting that concept, is actually healthier for me. 

Acceptance won't come all of a sudden, and it doesn't mean I'll never feel angry, or sad, or whatever.  This process is far from linear.  But acceptance can, I believe, allow me to find a sense of peace about my situation.  Acceptance doesn't mean I'm going to stop putting effort into my rehab.  But it DOES mean it's time for me to say "that's right, you can't do (fill-in-the-blank)... this happened....".  The whys and wherefores don't really matter anymore.  Thinking about whether or not I'm "too young" for something like this is irrelevant, and I know I'm not the youngest person to be dealing with these kinds of disorders.  Thinking that someone else with a different disorder somehow is better off, has it easier than me - feeling jealous of others, what they can do - is normal and understandable, I know, but not helpful for me in the long run.  What matters is to pace myself, take care of myself, and recognize the value of what I CAN do, the person I am, even WITH my disorders. 



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November 4th 2016 My support system...

By | Published Friday, November 4, 2016

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

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As I said in my last post, it's National Caregivers Month.  I don't, thankfully, need "caregivers".  Fortunately, I am still able to care for myself in fundamental ways.  But I DO have a support system that is really important to me.

I know that Ron (my husband) and I, given our "druthers" wouldn't choose my disorders.  But it's five years out now, and we are managing.  He seldom complains, whether he always "gets it" or not.  In the helping department, this probably isn't a complete list, but he drives me to the vast majority of places I need to go, runs errands, and schleps laundry up and down stairs (it's not the weight, but rather the balancing act).  Last but not least, Ron gives me a shoulder to cry on when needed.  I'm very grateful to have him in my life.

My daughters, college students who no longer live at home full time, were here in the beginning, which was very hard.  I know it was - and still is at times - really difficult to have a mom with significant disabilities.  But I think they know I do my best, and they also seldom complain.   I listen to them, help in ways that I can, and try to share experiences with them when possible.  They each help out and do what I ask, most of the time, when they are home.  They are becoming truly good human beings, and I'm proud of them.

My parents (and Ron) are the only family members, to my knowledge, who read my blog posts.  My mom and dad are always in my corner, rooting for me.  Concerned but also trying to simply give support.  That means a lot to me.  There are, to be honest, some family members who have drifted as time has gone by.  My parents also give much appreciated financial help.

I'm very grateful for my friends.  Most of my friends are online, and the majority of my social contact is online.  There are a handful of very special people whom I've never met in person - and possibly never will - but whose friendship I value tremendously.

Of course, there's my OT Joyce and VT Ann, who are both skilled, caring individuals determined to keep helping me.  Ann actually reads my blog posts, which helps her to understand my life outside of VT.  Dr. Margolis, my Developmental Optometrist, is one of the best doctors I know.

The Vestibular Disorders Association is not a single person, but a wonderful resource and I'm grateful they exist, to help educate and spread the word about these invisible disorders.

Thank you to everyone who is part of my support system. 

If you are struggling, please reach out!  If you know someone who is having a really rough time, please encourage them to reach out!  NO one has to get through this alone.

Here's a link to VEDA - www.vestibular.org

and here's a link to the National Suicide Hotline - 

http://suicidepreventionlifeline.org/#


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November 1st 2016 It's your turn...

By | Published Tuesday, November 1, 2016

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

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I've tried to share about myself in the hopes that people will have some understanding of my invisible disorders.  I hope my writing is informative, honest, and hopeful - that is always my intent.  I plan to keep sharing snapshots of my world, but I'd like to cast a broader net.

To that end, to everyone who has read my pieces, it's your turn to speak out - I'd like to hear from you.  Tell me about a typical day, a success, or something that's a particular challenge.  Whatever you share doesn't need to be long, and if you don't follow me on FB (though I hope you do :-) ), you can comment on my blog site.  I always check for comments, and then you'd need to check back on the site for my reply.  You can also tell me you'd like to talk to me, to figure out what you want to share.  You can message me on FB - for those of you seeing my writing for the first time, my FB page has the same name as my blog site, Visible Person, Invisible Problem.   

I'd like to incorporate my readers' stories into future blog pieces.  I won't surprise anyone; we'll communicate, and I'll make sure I have your permission.  I may do editing, but I want to be sure I'm sharing what you want me to say.  I'll need to see what works best for me, and the person whose story I'm sharing.  If I get deluged, I won't share everything at once - I'll have to see what happens.  However, I'd really like to do this because I think the more stories we share, the more we can support each other AND raise awareness.  Supporting each other is important, but speaking out and helping people to gain a better understanding of vestibular/vision disorders is also really important.

Finally, please share stories about caregivers - family members, friends, medical professionals - anyone who is part of your support system.  November is National Caregiver Month, so I'm hoping to share some stories about the people who help you cope.


Thank you - I look forward to hearing from you all!

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