macular degeneration, macular, diagnosis anxiety – My Macular Degeneration Journey/Journal

Category: anxiety

I’m stressed, anxious, depressed. How do I deal with this?

First, what you’re feeling is ‘normal’ for those who get a diagnosis of any vision-threatening disease. Some of you have been told by your eye specialist, “There’s nothing I can do for you.” That certainly can contribute to the stress of getting the diagnosis!

Research shows that stress may be a contributing factor to the progression of AMD. Even though more research is necessary, we need to be able to manage our emotional health to make better decisions and to be open to learning new and better ways to cope with the disease.

Who is Sue and Why Should I Read What She Writes?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 69 and with advanced dry AMD/geographic atrophy, she works as a psychologist, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and new friends she’s been making along the way!

My Recommendations

‘Advice to the Newly Diagnosed’

Since she’s written over 600 pages, I’ve collected some of them:

Sue’s other pages for the newly diagnosed and highly-rated pages

Dealing with the Emotional Reaction to Vision Loss

Stress and AMD

The article ‘Assessing the Impact of Stress on Age-Related Eye Disease’ says, “Article says, “Dougherty and colleagues also note that stress may be associated with increased inflammation and that AMD is an inflammatory disease — raising the possibility that stress may contribute to disease progression. Future research using repeated assessments with the PSS and measurement of inflammatory markers might help determine how perceived stress levels affect the risk of AMD progression and deteriorating vision”

Worry vs Planning

I am sure it escaped no one’s attention that all my future concerns, all the things I am planning for, are basically positive. A lot of work and potentially overwhelming but positive. I know more than one person silently – or not so silently – asked how I can be focused on positive concerns when – hey, folks! I am losing my central vision! I am legally blind! Why am I not putting my mental and physical efforts on the fact that I am losing my sight? What is wrong with me?!?!

Well, it is like this: I have gotten my finances in order. I have gotten my rides organized. I have my technology in place. I am known to the closest research team who are working on dry AMD. What else do I need to plan? If you can think of anything, let me know, but I think I have my planning needs covered. Anything beyond that is worry.

What is planning and what is worry? Frank Ryan writing for the dummies series says that planning – or problem-solving – leads to a solution. There is an end to it. Come up with a solution and you can stop planning. Worry, on the other hand is repetitive and does not lead to a solution. Worry creates the illusion you are in control. It gives you the incorrect belief you can somehow get in front of the problem and avert disaster. In the end, worry is ineffective in creating positive change. It leads to anxiety and depression.

Planning is active and purposeful. Worry is passive and avoidant. Worry keeps you in emotional mind but planning gets you into wise mind. [Lin/Linda: For those just joining us, “emotional mind” and “wise mind” are concepts from DBT, a psychological therapy that Sue uses in her job as a psychologist, teaches and uses on herself! You can read more about it in this article from Psychology Today and in her past pages – look for the category Cognitive Therapy.]

The unfortunate truth is there is no solution to the problem we have. Dry Age-Related Macular Degeneration is currently a disease with no treatment and no cure. Ryan suggested we accept that which we cannot change.

Frederic Neuman writing for Psychology Today took a slightly different approach. He called worry frustrated planning. He says we worry about what we are not able to control. We search for a plan to control the things we cannot control. When one cannot be found, we worry.

Neuman went on to suggest a two-part strategy for attacking a worry. Basically, it involves turning a worry into a plan! What are the chances this scary thing will happen and what happens if and when it happens?

It is a given that I am going centrally blind. It is happening. What happens next as my vision loss progresses? I am physically fit. I am financially fit. I have technology and human supports. I am on lists for experimental treatments. As I become more impaired, those are the things I will lean on. I have a plan about what I am going to do. Why worry?

So, decide what might go wrong. How are you going to handle that? Gather the resources you need to implement the plan. Feel better!

Written January 20th, 2019

Next: BE TRUE TO YOURSELF

Sue’s Best Pages – Part 4

continued from part 3

Part 4 Using the Tools from DBT (Dialectical Behavioral Therapy)

  • “For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.”
  • “DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior.”
  • “One of the DBT Distress Tolerance Skills is ACCEPTS (another acronym I’ll explain). The A is for activities.  A lot of time to sit around and think about everything that is going wrong is not good for anyone. Getting out and about and – for even just an hour – forgetting that all hell is breaking loose in your life is great therapy.”
  • “Enough said on that. Besides activities and comparisons, there are five more ACCEPTS skills: contribute, (opposite-to) emotion, pushing away, thoughts and sensations (the CEPTS). This website is my idea of contribute. Contribute means doing for others. Get out of yourself and make things better for someone else.”
  • “DBT has some skills for improving the moment. These skills are good for getting through the rough patches when you are down or frustrated and there is not a great deal you can do about fixing things at that time. Conveniently, they are called – acronym alert here – IMPROVE skills.”
  • “Dialectic Behavioral Therapy (DBT) has Self-Soothing Skills that are taught as part of the distress tolerance module. You remember self-soothing? When you were one it was the thumb in the mouth and the favorite blankie. Maybe it was sitting in your crib and rocking. Right now those ways of self-soothing might not appear very appealing, but they worked when you were one. What can we old, mature folks do that will work as well without the stigma…or the buck teeth?”
  • “Back on track, DBT concepts here. I think that this situation may highlight the ACCEPTS skills. I see contributing (the first ‘c’ in ACCEPTS). We sometimes have to weather a crisis by getting out of our own problems and helping someone else. It gets the focus off of us. It gets us back into the human race and allows us to flex our compassion muscles instead of our self-pity ones.”

Next: Coming soon – Technology

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Life is Not Fair

I am capable of throwing one, fine pity party. Nothing is going my way. Everyone hates me, and I will never be able to cope with this! [Lin/Linda: We’ll have a little sing along about this at the end of the page. ::grin::]

There are some days I would be just as happy to retire to my bed with a half a gallon of chocolate ice cream and a spoon -don’t forget the spoon! – as well as a full box of tissue – you don’t want to get your ice cream soggy! I just want to eat myself into oblivion and cry myself to sleep. To face this all the next day…

Dry AMD is a long campaign involving loss after loss. I have been living with – surviving, tolerating, whatever – this condition for over two-and-a-half years now and it can be damn discouraging. What do you do when you are out of ice cream and have to face reality? How do we get back to an even keel?

First of all, let’s look at your physical state. Are you sleeping well? Eating well? Exercising? Taking care of illness? We all know things do not go as well when we are physically out of sorts. If you want to tolerate your vision loss better, take your allergy medication. Walk the stairs. Eat your vegetables! A fit and healthy you is a more tolerant you.

As much as we are hoping and praying and looking every day for a treatment, the name of the game right now is tolerance. How do I tolerate today? …and today? …and today? Sometimes it comes down to how do I tolerate this moment. Depends on the day.

We have talked about distress tolerance skills in other posts. They should be available through a simple search of the website. Quickly here, I want to mention avoiding a black and white attitude in your interpretation of situations. Is it really true that nothing ever goes your way and everyone hates you? Is it true you will never be able to cope? Absolutely are rare in life. If you have even once been successful in coping, that means there is a chance it can happen again. Don’t be so quick to dismiss yourself.

Interpretations are extremely important. The lens we look through upon the world is critical. Try to look at the bright side. Maybe today is one day closer to a substantive treatment, not one more day that must be endured on the way to the grave. It is all in the spin, doctor. Reinterpret and reframe again and again.

And last of all for this page, stop wasting energy fighting reality. No, it is not fair. Somewhere along the line, someone told you life is not fair. You should believe him. Bad things happen to good people and this time it was your turn. Why? Dunno. Back to Alfred Lord Tennyson, “Ours is not to reason why. Ours is but to do and die.” Make the best of a bad situation. Put your energy towards things that can be affected, not towards things that cannot.

Maybe the meaning in your suffering will be a classic poem. Could be worse.

[Lin/Linda: As promised: sing along with the video “Nobody Likes Me, Everybody Hates Me, Think I’ll Go Eat Worms!”]

Written August 20th, 2018

Next: No Train for Christmas

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Same Stuff Different Day

I have been home from State College for about 12 hours. Tedium has set in quickly.

The online dictionary defines tedium as the state of tediousness. Gee, how informative! (Sorry. Feeling snarky.) Tedious means monotonous, boring, SSDD (Same Stuff Different Day).

I have an inkling of what the problem is. State College was exciting when I hardly even got there. I was there last year. I was there in May. I will be there next month and hopefully again next year. Something I counted on to break up the monotony has become more monotonous.

In Never a dull moment by Kirsten Weir for the APA, John Eastwood described boredom as being “the unfulfilled desire for satisfying activity.” As I said before, it is not a lack of things to do, but a lack of things you want to do. Been there. Done that. Got the t-shirt. In other words, sorting laundry, and mopping floors today has not improved my spirits.

James Danckert has discovered those who bore easily may be more susceptible to mental health problems. One of these problems is depression. Although boredom and depression are highly correlated, they are separate states. Eastman suggested boredom can lead to inner focus, negative rumination being a factor in depression.

Out in the “real world” most tedium comes to an end. But what about some of us who are homebound? Being underwhelmed, as it were, leads to some behaviors we should not have. Think alcohol abuse and overeating.

There is even some evidence the phrase “bored to death” is not hyperbole at all! In a longitudinal study of British (hi, guys!) civil servants, the ones who reported being chronically bored were more likely to die young. Yikes!

So what to do about this tedium issue? Another researcher, Van Tilburg suggested bored, meaningless activities lead to people trying to generate meaning in their lives for themselves. Sometimes this can lead to negative outcomes.

The idea seems to be to find a positive purpose. What can you do to give meaning to your existence? To your vision loss? Maybe you want to sign up to call other homebound folks to check on them and chat. If you are going to engage them in conversation, maybe you should listen to some news features. Maybe you can call some people losing their sight. You might have a common interest!

Are you still living in your hometown, the town your great-grandparents lived in, too? Remember some stories you heard and record them for the historical society.

Did you miss out on instrumental lessons as a child? Always want to be able to sing without sounding like a toad with laryngitis? It is not too late. I would suspect a few phone calls could find instruction at a reasonable rate. Even a kid in a middle school band could give beginners lessons. And just imagine hearing about life through the eyes of a 13-year old.

What do I do to increase purpose in my life? Oh, I write a blog. I thought you knew! I also walk puppygirls. Bye!

Written August 4, 2018

Lin/Linda here: I am here to share a resource I found for myself when I was looking for courses in my new field.  It’s udemy.com— a school that has reasonably-priced online courses in all kinds of topics from personal development (eg. happiness, religion & spirituality, stress management, memory), lifestyle (eg. beauty & makeup, travel, arts & crafts), Music, Photography, Language and many MANY more! Many of the courses are $10.99 or $11.99, some are more expensive. They are always running sales. They’ll give you your money back if you don’t like a course which happened to me. They are very happy to work with their customers. Check them out, and let us know which courses you are taking.

Next: Where’s Your Hope?

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Now What?

There is a Zen saying I came upon: “Leap and the net will appear.” It, of course, speaks to faith, faith in yourself, faith in the Universe and faith in a Higher Power. I am leaping and I am scared to death.

Today is the last day of my school job. I woke up at 2 am in a panic. I have had this job since 1978! Even though I have been planning for “now what”, I still keep thinking “now what?”.

“Now what” is a momentous question. It contains a whole lot of stuff. The Buddha said (and no, this is not a Buddhist blog. I just keep coming upon Buddhist quotes and they resonate. If you have a Bible quote or a Quran quote that applies, please share). Anyway, to start again, the Buddha said suffering comes from holding on to what you can no longer have, to what you don’t have, to what you can never have. Some Westerner boiled it down to “happiness is wanting what you have.”

Okay, so letting go and moving on can reduce suffering to pain. I am trying hard to pull my fingers off from around holding on to what I no longer have. Think this is easy? Try it sometime……oh, wait. You have!

I suspect just about everyone who is reading this has macular degeneration. After all, that is what this site is supposed to be all about. (And yes, I recognize I go off on major tangents more than I truly should). I also suspect every one of you has asked the question “Now what?” Now what after a sight loss, now what after leaving a job, now what after losing a driver’s license.

The problem is, I can barely answer that question for myself. How in the name of all that is Holy can I expect to answer it for you? Nope. You are sort of on your own there.

What I can tell you is there is only suffering from holding on to what you don’t have. A very wise man said that several thousand years ago. Moving on is the way out of the pain.

So, we leap. We are not sure there is a net there. We trust there will be…or we weave one for ourselves on the way down.

We don’t have to be brave. We don’t have to deny the pain. Hell, I have been in tears half of the day. All we have to do is have the faith to jump. We will be saved.

Leap and the net will appear.

[Lin/Linda: I, too, am leaping.  After quite a few years of not being employed and at age 65, I leaped into a profession I knew nothing about, one where I will be held to high standards, one that I may not be able to continue due to my physical restrictions. Is there a net? I hope so!  We are all on this journey called life together!]

Written June 6th, 2018

Next: Patience…or Not

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Life’s Transitions

I had to get transportation home from school today. Although home and school are less than ten miles apart, it took me an hour and a half to get home. One of the riders lives in the hinterlands, God’s country, call it what you will. The bottom line was this: we went baja-ing in the short bus. [Lin/Linda: I had to look up ‘baja-ing’ – also spelled ‘baha-ing’ – in the Urban Dictionary.  It means “To cruise around on a motocross bike, four-wheeler, big pickup truck, jet ski, speed boat or some other vehicle where you may experience excitement by jumping dirt mounds, waves, or some other form of obstacle.” I’ll email them to add ‘short bus’! ::grin::]

Good thing rural Pennsylvania is pretty country. The roads were not. Potholes, ruts and mud. Also kids riding horses, as well as deer, dogs and goats – yes, goats! – all in the road. The goats were hanging out near a house with a sign, “not my goats”. The resident may have put up the sign in self-defense, but the humor was delicious. Especially since we had already been riding for an hour!

I needed that humor. It punctuated the ‘fact’ my life can be a comedy of the absurd and sometimes the only thing to do is to sit back and enjoy it. When baja-ing in the short bus, be sure to notice the goats!

I needed the humor because I am embroiled in a big life transition right now. Retiring from school and approaching 65 have got me reeling. Pick a retirement plan. Pick a Medicare plan. Find health insurance for my husband. HOW much?!?!? Find cheaper health insurance for my husband. Check what will happen to my state certifications. Good grief.

Then there is the stuff at the counseling center. Launching a BIG project there. That ‘free’ training we got the other week is going to be paid for with sweat and aggravation.

How to handle transitions. Carefully, very carefully; right? Psychology Today had a piece about ten ways to handle life’s transitions. That piece talks about moving as an important transition but I should think leaving a job, sight loss, that sort of thing would be just as important. I would suspect the “ten ways” would apply in some ways. Ya think?

Anyway, Psych Today suggests we give the devil his due. Transitions are important and they need to be acknowledged, not shoved away and never thought about. Painful or not, these times define our lives.

Then there is the question of attitude. Threat or challenge? Good or bad? I have yet to be jumping up and down with joy about retirement or sight loss, but I have tried to find meaning in them. Remember Viktor Frankl said, to paraphrase, sometimes the dignity with which you handle your challenges gives the pain of those challenges meaning. Focus on the positives whatever they might be.

Then of course, there are supports. Turn to your friends. Turn to yourself! We haven’t all gotten this far without some successes. That successful person is still in there and ready to help. Take confidence from all she accomplished. You can do it!

That brings us to role models. If you cannot be a role model for yourself, find someone to show you the way. There are people who have walked your path before you. They got through it and so can you.

Written May 23rd, 2018

Next: Shine a Light Under the Bed

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All You Have to Lose

Morning. Do you ever think that if it were not for feeling stressed you would feel nothing at all? Yep. Insanity still reigns. Just when I got things going the right directions with retirement and the webinar we need to listen to – not to mention other work for the psych office – the accountant sends the tax forms back. What I thought was going to be a credit is a debit. Somebody made a blunder. One hint: not me.

So, you may be hearing from me requesting bail money, but in the meantime I am going to use some skills on myself.

They have made some additions to the DBT skill set since I was trained. We are finding them in this webinar. One thing they are stressing is the brain-body connection. They are talking sympathetic and parasympathetic nervous systems, Vagus nerve and all that good stuff.

I know I hit on this a bit before. Bear with me. There is some neat stuff here and if you get very, very stressed out by life, the state of the world and/or the state of your vision, these things might help.

First of all, ever hear of the mammalian diving reflex? That is what happens when the toddler falls in the frozen river, is fished out from under the ice half an hour later and lives, no worse for wear.

Bending over, putting cold water on your face and holding your breath (15 seconds or so at a time for our purposes) will trigger this response. The reason we want to trigger it is it is fantastic for reducing stress reactions. Flipping out? Ice on your face, bend at the waist and hold your breath. It is sort of a quick, temporary fix but sometimes that is all we need.

There are other ways to stimulate the parasympathetic nervous system. That is the system that brings us down after the sympathetic system revs us up. For one thing you could eat a sour candy. Getting the saliva flowing is one way to reduce stress. Then there is always a good yawn or three or four. Yawning kick-starts the parasympathetic nervous system as well.

One of the distress tolerance skills we teach in DBT is distracting with thoughts. For a long time I thought it was distracting with complicated thoughts like doing calculus in your head. It potential could be, but it can also be simple, repetitive thought. In fact, simple repetitive thought function to disrupt the action of the default mode network of the brain.

According to Wikipedia the default mode of the brain activates when we are thinking about others, ourselves, past and future. Hmm….sounds like brooding and worrying to me.

A great way to block the action of the default mode and reduce worry is to do something verbal that is repetitive or tedious. You can mentally count or say the alphabet. Name the 50 states. Think of a name that starts with each letter.

Or you can go old school. How about the Lord’s prayer or om Shanti, Shanti, om? There are hundreds of mantras, religious and secular. Find one you like and repeat it over and over. All you have to lose is your worry.

Next: Different Paths

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Keep an Open Mind

Hi! Looking for information on coping with vision loss I found an article that covered something called the Coping with Vision Loss Study. It was covered on the VisionAware.org site.

The study was a small one (n=163) but it had a noble goal: to document the process of coping with vision loss. The information came from people who had gone through the process of vision loss. 45% had macular degeneration.

The study determined the most prevalent emotional reaction to the diagnosis of a condition that would cause vision loss was anxiety. Personally I do not need to ever have panic attacks like the ones I had ever again!

Even though anxiety was a major concern for the greatest number of people, it does not mean other, emotional problems were not present. A fair number of respondents were found to be dealing with moderate to severe depression.

Of course, since the study was about actually coping with vision loss, the emphasis was on factors and strategies for getting by and avoiding these adverse, emotional reactions. The study reported respondents had a variety of suggestions for doing this. These suggestions included seeking out the most competent specialists available as well as getting a second or even a third opinion, following doctors’ directions and connecting with others who have personal experience with vision loss.

These suggestions from the study respondents centered on personal responsibility and becoming your own, best advocate (as opposed to your own, worst enemy!) Be proactive about your life and your condition. Become knowledgeable about the condition. Get your questions answered. Monitor your own vision loss and seek out training so you can learn new skills to increase your independence.

Building support networks was another idea endorsed by the respondents. The respondents specifically mentioned family, friends, specialists and helpful community resources.

Community agencies were also listed as very important. Many agencies for the visually impaired can be helpful in finding support and educational resources as well as help you find the appropriate assistive technology.

Technology does not seem as appealing to the older generations as it does to younger folks. Yet respondents encouraged those who are new diagnosed to embrace the technology that is available. Competent use of iPads and magnifiers can significant improvement the quality of life for the visually impaired.

The article mentions a great many things we have talked about. It reviews the importance of proper lighting and contrast, for example. Finding someone who can help you with these sorts of things is important.

The list of recommendations from the study authors veers off into some things that are more personal and possibly even more essential for adjustment. The list includes things like being patient and gentle with yourself. Adaptation is not an overnight process, often grieving the loss is necessary before moving on. Take time to do so, but try not to get stuck in your grief.

I paint my pigheadedness as positive and call it persistence or fortitude. However, stubbornness can also be a bad thing when it keeps you from experimenting with technology or other strategies for living. The study suggested keeping an open mind and doing what is effective.

Which brings us to the last one I want to mention: there is more than one way to skin a cat (I reiterate: where did that saying come from? Did our ancestors spend that much time hanging out and trying various ways to skin cats? Yuck.) Find new ways to get things done. The idea the only right way of doing things is how I was taught at my father’s knee does no longer apply. Learn to be flexible and do what works.

There are other things that were discovered by the study, but those are the highlights as I saw them. Hope it was helpful!

Written Feb. 4th, 2018

Continue reading “Keep an Open Mind”

Suck It Up, Buttercup

I try not to throw pity parties for myself. I really do. Some of the time things might not be great but I get by without a lot of feeling sorry for myself.

However, sometimes other people send out the pity party invitations and I am very tempted to attend.

What am I talking about? I was finished with exercise class and waiting for transportation. Again. A friend asked if I needed a ride. “No. I’m good.” And I waited…and waited…and waited. The instructor finished whatever instructors do after class and started for her car. Why was I still there? Was I sure I had a ride? She looked at me with such concern I wanted to cry.

I finally got home – five miles – an hour after class had ended. I got to eat at 8:30. God, this is a pain!!!!!!!!!

Since it is generally good to work through these things before they grow legs and run away with you, I decided to write a page. Self help, ya know?

I know none of you fine people ever feel sorry for yourselves, but bear with me while I work through this; OK??

I found a Psychology Today article from 2013. Russell Grieger, the author, seems to blend a bit of DBT (alright, so I see DBT in just about everything) with a bit of “suck it up, Buttercup!”   Grieger quotes George Bernard Shaw as saying “People always blame their circumstances for what they are. I don’t believe in circumstances. The people who get on in the world are the people who get up and look for the circumstances they want and if they can’t find them, they make them”.  Grieger divide people into two groups. To shorten what he said, these groups are the whiners and the responsible ones.

I don’t believe there are two groups. I feel there are two approaches and most people flip back and forth. Sometimes you have to utter a few “Really!?!? Are you KIDDING me?!?!”s before you can get back in the game.

Geiger does make some suggestions for not getting stuck in the whiners’ camp. Some of them are rather familiar. Pain is the human condition. What makes you think you are so special?  No, life is not fair. Shit happens and it happens to the nicest people. The corollary to that is “the bad guy does not always die at the end of the movie. Sometimes he gets the girl and rides off into the sunset.”

Then the much nicer ones. You are stronger than you think. You can chose not to let this dictate your life.

Geiger did not add these but I am going to. The reason I ride the #¢≠π~£! van is it is a means to a positive end for me. Without it I could not be out in the community doing my thing. I can suffer a bit if it gets me what I want. The second thought I had was “no mud, no lotus”. I like to think the adversity will make the a better person. Good things can come from adversity if it is faced with the proper attitude.

So there that is. Pep talk done. I guess I can “suck it up, Buttercup!” one more time. Shaw would be pleased.

written December 21, 2017 Continue reading “Suck It Up, Buttercup”

Broken China

Hello, there! I woke up at 3:30 last night with rotator cuff tendonitis pain. While the over the counter nighttime pain reliever got rid of the pain, it may have worked a little too well. I woke up at 9:30 to the remnants of a puppy party!

Crawling on the floor picking up pieces of whatever they had chewed, I discovered the knobs on the drawer in my father’s gun cabinet had been pretty thoroughly gnawed.

If I were fully sighted, would I have noticed it before this? Not sure, but my guess would be yes.

Putting away dishes a little later, I had several, small bowls leap out of the cupboard and hit the counter with a resounding crash. Thoroughly scared Maggie. Although she is the rowdy pup she is also the more sensitive one.

Of course I did not have shoes on again. Dealing with shards of white bowls on a light-colored floor, I had to call my husband for help. Why can’t any of my ‘disasters’ happen with good contrast!?!

If you have not been following along I want to mention this is the second time I have been standing in the middle of a mess of broken kitchenware. Sans shoes, of course. If Lin would be so kind, I believe we could get a link for you…here. There are some suggestions I stole from the experts. [Lin/Linda: Sue’s page is called Did You Drop Something?]

While I really cannot say any of the occurrences this morning incited a panic reaction in me – I actually thrive in chaos; tedium drives me insane – I suspect some of you might have had a meltdown. Vision loss plus insane, chew-happy pups plus broken china. OMG!

I remembered I was just given some 100% natural (and, yes, I know a good, stiff whiskey is 100% natural, too) ways of dealing with panic and anxiety. Thought I would share.

The sympathetic nervous system is the one that activates your fight or flight response. It is the one that causes your heart to beat faster and you to experience stress. Good when it is needed but not needed all of the time!

The system that brings you down again is called the parasympathetic nervous system. A big part of this system is the vagus nerve.

They are finding stimulating the vagus nerve helps with panic and anxiety. The most popular technique, as you may know, is breathing from your diaphragm. There are, however, a number more strategies you may wish to try.

In 2014 Newsmax published a list of simple tricks to reduce stress through stimulating your vagus nerve. Immersing your face in cold water is helpful. Another technique is to suck on something that will immerse your tongue in saliva.

According to a 2017 article in Optimal Living Dynamics, singing, humming and chanting are helpful in stimulating your vagus nerve. This article also suggests some of my favorite things: socializing and laughing, exercise and yoga.

Controlling your reactions to sight loss and its problems is almost as important as caring for your eye health itself. Next time you find yourself stressing, give some thought to your vagus nerve.

And repeat after me: Ommmmmmm…….

written Dec. 12th, 2017 Continue reading “Broken China”

Sue’s Best Pages – Part 2

continued from page 1

Part 2 Dealing with the Emotional Reaction to Vision Loss

  • “AMD can lead you to question whether or not you have any value. It may lead you to feel unworthy and guilty about being dependent upon others for so much. These are symptoms of depression, too.”
  • “No sense getting peeved and denying it. It is what it is and I feel the way I feel. That is the way it is. Acceptance of what is important.”
  • “If you don’t feel very accomplished or brave? Fake it! There are people watching. Be the person they will emulate during tough times in their lives. Show them what grace under fire really looks like.”
  • “Remember this journey is not a sprint, it is a marathon. In fact, it is a marathon that we don’t even know the course.”
  • “Many of us are facing limitations. These are limitations we don’t like and don’t want. Limitations that hit right at our independence and threaten who we are and how we interact with our worlds.”

Next: The Highest Rated Pages

 

One Foot in Front of the Other

We recently had a reader ask how it is possible to maintain hope, faith and optimism, etc. when “everything” is slipping away. She stated she does not want this disease because she had watched it “destroy” others. Her friends do not want to associate with her because of the “doom” she is facing.

Oh, my…where to start. First of all, I guess I need to say “I’m with you! I don’t want the damn thing either.” But wanting it or not wanting it really does not make a bit of difference. We do not get to make decisions like that in our lives. We only get to accept (or reject, but if you fight reality, I can practically guarantee you will waste a whole lot of energy and in the end, still lose. To paraphrase “I fight reality, reality always wins!”). We also can find ways of coping.

That appears to be a magic word: cope. This is not a fatal disease. If you are still breathing and conscious, you are capable of dealing with things and trying to make them better. Your hope is in every breath you take. Breath.

Remember one of my favorite people whom I never met, Viktor Frankl, said “the last freedom left to any man is determining how he will react to his circumstances.” This disease will not destroy us. It may take things from us, but not destroy us. We destroy ourselves through our reactions to it.

Our reader may not realize it, but she IS coping. She reached out to this website. She has sought professional help and she is involved with the state services for the visually handicapped. She is doing what she can do.

We don’t have to like having AMD and losing sight. We don’t have to be happy about it. We just have to keep moving. I mentioned this before but another one of my favorite, never met people, Winston Churchill, said something like “when you are going through Hell, keep going!” It is in pouting and denying reality – in stopping in the middle of Hell – that we are destroyed.

To address the part about being hopeful, optimistic, etc, a bit more, there are times all of those pretty thoughts are going to desert us. Times there seems – as in appearances and impressions – there is no hope. Those are the times we simply put one foot in front of the other. Determine what is next and do it.

I have been told I am “in love” with DBT. I am, for the simple reason it works. Mindfulness and staying in the moment work.

For example, the Beastie Baby has been diagnosed with lung cancer, but right now she is sleeping peacefully on the floor next to me. Right now, life is good. We will take one day at a time, one hour, one moment if need be. We will not grieve (much) and ruin life when things are good. Lesson: stay in the moment. Deal with the now. By dealing with each moment as it comes, we can handle a scary future. Buying future grief and hardship is a bad investment.

I could address the absolutes – always, never, everything – but I won’t. Not much, at any rate. We just need to remember few things in life are truly that black and white, that cut and dry. Every dark cloud has a silver lining and every silver cloud has some dark inside.

This has been a little jumbled, but that, after all, is my mind. I guess in summary, what I want to say is:

Accept this is happening, Recognize you are not powerless, we all have choices we can make.

Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself.

We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.

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Keep On Keeping On

I gave a client “there is nothing else you can do” speech today. I told him if his relative is not a danger to himself or others, he could not force him into treatment. Doesn’t matter if he is in communication with the fairy people or if he sees the devil in the fireplace, there is nothing my client can do to force him into treatment.

People hate that speech. My client told me he hated when people said that to him. We like to believe in our efficacy, our power. “There has to be a way! Maybe I can try harder, find a better argument, something.”

Accepting there are some things you are not able to influence is a bitter pill.

In at least that way, you folks who have wet AMD are ‘better off’ than those of us who have dry. At least you folks get to actively participate in your own treatment. Granted, getting a shot in the eye is not my idea of a good time, but it is something. We folks with dry AMD get to do…..nothing.

How do you sit there and do nothing when everything is falling apart around you? The thought that you may have to endure for years and years and have no recourse is terrifying for people.

I have talked about the distress tolerance skills but, since this came up and we are actually teaching distress tolerance, I want to revisit it. Distress tolerance skills are not ways of ‘fixing’ anything. They won’t make my client’s relative to not be psychotic and they won’t give me 20/20 vision. What they are are strategies for enduring.

With distress tolerance skills, we get to hunker down and survive the storm, not make the storm go away.

Also said this before but I will say it again: one of the tenets of DBT is “I am doing as well as I can, but I can do better”. No one wants to be a screw-up. We can pretty much guarantee that under their present state of circumstances, most people will be doing the best they can. Given new circumstances and a new skill set, they can do better.

How that figures in here is that I don’t want you to think that using distress tolerance skills to endure means you stop trying. Offered a viable treatment, I, for one, would take it in a heartbeat. Treatment would be the new skill set and how I could ‘do better’. However, until that day comes, I am stuck enduring.

There are several pages on which I talk about the DBT skills IMPROVE and ACCEPTS. IMPROVE skills are used when we are in the midst of a crisis. The letters stand for imagery, meaning, prayer, relaxation, one thing in the moment, vacation and encouragement. [Click here for one of Sue’s past pages on IMPROVE.] ACCEPTS skills are used when we are trying to endure in the long term. The letters stand for activities, comparison, contribute, opposite to emotion, pushing away, thoughts and sensations. [Click here for one of Sue’s past pages on ACCEPTS.]

Lin will probably put the links in, but if not, just search the keywords. There really is something you can do when there is nothing to be done.

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A Tutu and A Tiara

I would like to go back a day or so in time but continue on the topic of DBT Emotional Regulation Skills. Needless to say, finding out my AMD had progressed that quickly and I would have to redefine myself as a visually impaired person was not fun. It was downright depressing and we have already addressed the lovely panic attacks that have been – and actually continue to be – enveloping me at odd moments. Saying that I was in a state would be an understatement. My husband said that I cried more than I had cried in all the previous 25 years of our marriage. So, in that state, why in the name of heaven am I wearing a blue tulle tutu and a paper tiara? The answer is: it was Marcy’s birthday. We had been planning a party in Zumba class.

I had cried more than I had cried in all the previous 25 years of our marriage.

Could I have stayed home and cried? Of course.  Part of me wanted to and no one would have faulted me. I had drawn the bad card and it was understandable if I had crawled into my shell for a while, even a long while.  The problem was that it was Marcy’s birthday and I had a tutu and tiara waiting for me. I was supposed to be in my usual place dancing.  The problem also was that I had to do something to challenge my mood or I would have been a long time crawling out of my hole.

It was Marcy’s birthday and I had a tutu and tiara waiting for me.

DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior. Not a new concept, Ignatius Loyola said something about performing the acts of faith and faith will follow. In other words: fake it until you make it.

Opposite to Emotion boils down to fake it until you make it.

So, for one hour, I acted as if all was right in my world. I dressed up. I danced. I laughed. And for that hour I felt better.

Please note I said for that one hour. It is all right that it did not last forever. It is all right if I went back to being distressed. For that one hour, I was improving my mood and fighting the downward spiral that could have led to more problems, such as a serious depression. Maybe I could do it another hour another time.  Behavior follows emotions but emotions also follow behavior. Fake it until you make it. Put on your tutu and your tiara and dance.

Put on your tutu and your tiara and dance.

Written February 2016. Reviewed September 2018.

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Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days.   I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting.  That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery.  I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

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