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

Tag: anxiety

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”

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.

Continue reading “One Foot in Front of the Other”

No Kidding!

I pulled a ‘dumb, blind’ chick trick yesterday. I read the time on my phone wrong and was waiting for my ride an hour ahead of time. That was bad enough but when I thought she was late, I got worried about her and started texting her. Pretty sure she was not the one with the problem!

Moral of the story would appear to be you should double-check what you think you know before acting on the ‘information’. Fortunately she thought it was amusing. I decided to laugh, too. Rule 62.

I have finally found time to go to the vision support group run by my low vision specialist. That is tomorrow afternoon. Work is in a temporary (I hope) lull and I could rearrange things a bit.

Not sure how that is going to go. My low vision person had said she wanted me to attend so some people could see you can survive and adapt with vision loss. Not sure I want to be exhibit A. I would like to help but some people get resentful when you try. See how it goes.

We all know the support of others is so important when you lose your sight. I find it sort of amusing – but sad – the medical community is just awakening to that reality. Literally yesterday in real-time, April 10, 2017 they published an article entitled Communication from Doctors Could Reduce Anxiety for Macular Degeneration Patients. Excuse me, but “no shit”. Do you think they joined our Facebook group and figured that one out?

The good folks at Manchester Eye did a study that found large levels of depression and anxiety in people getting shots for wet AMD. No…ahhhh. Never mind.

But don’t you think having a needle stuck in your eye would be a really good reason to be anxious????? Just saying, ya know.

Manchester went on to say there is “value in human interactions between clinician and patient” in offering reassurance about the treatments…..I’ll just bite my tongue and be quiet now.

Better yet, Hugo Senra, clinical psychologist, suggested there is value in specialized counseling with certain patients. All rightee, then. Cognitive behavioral therapy, dialectic behavioral therapy? How about trauma therapy? Not like they are not available most places yet the study indicated 89% of the patients showing anxiety and 91% of the ones showing depression were getting no therapy at all! Someone – actually a large number of someones – appears to be dropping the ball here.

So, yes, it does appear the anxiety and depression you are feeling about your AMD and the treatments really do exist. And yes, we are a grossly underserved population. And yes, we might actually benefit from treatment.

If you are one of those thousands and thousands of underserved folks and want psychological treatment, turn your insurance card over and call the customer service number. They should be able to provide you with a list of therapists who take your insurance. If you have no insurance, call your local mental health agency. In Pennsylvania they are called base service units. Elsewhere I have no clue about the nomenclature but if you search for public mental health providers, they should come up.

In short?……..

AMD? Depressed? Anxious? There is help. No shit. Continue reading “No Kidding!”

I Survived the Blizzard of ’17

I survived the blizzard of ‘17!

Not that big a deal but it sounds impressive.

Beastie Baby is generally beside herself, though. Her doggie door is snowed closed and she cannot go for her walk on the tractor path we often use. The snow is just about over her pointy, little head. All of the ‘pee mail’ she wants to answer is under two feet of snow.

Every time we go out she looks around at the snow and then looks at me as if to say “What is going on here? Where is my world?”

It would appear a number of people feel that way, too. Going through town my husband and I noticed dozens of houses that looked like no one had ventured out in the last 36 hours. No attempt at snow removal. No footprints. Nada. Closed until Spring.

Perhaps we are just the intrepid types. Sounds better than saying we are too dumb to get in out of a blizzard; yes? We were the only people to go to the recycling center. I had called. Really, I did. The message said open Wednesday 7 to 5, but it wasn’t. Open, that is. I asked the guy plowing if we could still sort and leave our recycling and he directed us to the back door. One job done.

I was going to write this page on the fine art of asking for a favor, but it turns out the rules in WikiHow are just about identical to the rules we went over in another page (Kicking and Screaming).

Then we were the only customers in Subway. The police came in as we were leaving, but they have to be out on the roads. They are always intrepid.

Then we were the only customers at AAA. When we walked in they were taking pictures of one another! I guess it was to commemorate the occasion of their all being intrepid souls and getting to work.

The online dictionary gives as synonyms for intrepid the following: fearless, unafraid, undaunted, unflinching, bold, etc. I think you’ve got the idea. The essential concept there is overcoming fear. Probably something we should cultivate in dealing with AMD.

Back to the web, I discovered an article entitled 33 Powerful Ways of Overcoming Fear….Right Now. The article runs down the usual suspects. You know, being aware you are afraid, identifying what you are afraid of, journaling, talk therapy. It also talks about some stuff I have never heard of like Emotional Freedom Technique and the Sedona Method. Unfortunately, you can get the ones I have never heard of for “only four monthly payments of….!” Ignore those. They are apparently the way the author pays for his site. Pay attention to the ones he offers for free. [Lin/Linda: You can actually check out the Sedona Method for free, click here.]

Remember, free is one of my favorite words.

Another online article I found was entitled 5 Sure-fire Ways to Overcome Fear and Anxiety Today. This article goes over the basics and uses some of the DBT techniques. It also has its own, catchy acronym: AWARE. This stands for accept, watch, act normally, repeat and expect the best. Accept is the same as DBT and watch is DBT’s observe. Watch/ observe allows you to get comfortable with the fear and the fear to extinguish. That is psychology talk for go away.

This page has gotten a little long. Maybe get back to this topic later. I am apparently going to have some time. Just got the call. No school again tomorrow!

Written March 15th, 2017 Continue reading “I Survived the Blizzard of ’17”

Grandma’s Reindeer

This time next week I am supposed to be on a plane to Reykjavik. First thing I want you to notice is in the last week I have learned how to spell Reykjavik correctly. The second thing I want you to note is in real-time it is the end of August and Iceland just had two reasonably substantial earthquakes ….and they expect a volcanic eruption in the near future.

My husband thinks this is utterly cool. He would like a front seat to an apocalypse. I would like to see an eruption as long as nothing gets hurt. You know, like in a movie: no animals were killed or injured in the making of this extravaganza.

With my luck, I will be in the way when the caribou decide to make a mad dash for it. You know the song about Grandma getting run over by a reindeer? Yep. That would be me.

Besides thinking about living a bad Christmas song, I have been thinking about everything that has to be done before I leave. I have work to finish at two places of employment. I need to go to the pharmacy and the bank. The list of things I want to see in Iceland is only half done. Packing has hardly been given a thought, etc, etc.

It is enough to make a girl crawl into a fetal position in the corner and hyperventilate….which reminded me. I told you I had had panic attacks when this mess first started but we never really talked about the ‘delightful’ things. According to the Mayo Clinic a panic attack is a sudden episode of intense fear that triggers severe physical reactions. They happen in the absence of any obvious danger and often come “out of the blue”. There is no good theory for why some people have panic attacks and others don’t. There are theories about genetics and temperament. Major life changes, stress or trauma can put you at risk for panic attacks.

I never had one until I started to lose my vision. Then I had a time I was having four or five a day. Symptoms included a lot of autonomic nervous system stuff like rapid heart rate and hyperventilating not to mention the feeling of impending doom and fear. Like I said, ‘delightful’.

I treated mine with good drugs. If you are having panic attacks, run, don’t walk to your doctor for anxiety medication. Many of you won’t need to be on the medication for the rest of your lives and, if you do, so what? It is better than waking up screaming three and four times a night like I was.

Other treatments? Psychotherapy is helpful. The emotional regulation component of DBT, including all aspects of physical regulation, is useful. Remember to stay active and try to get enough sleep. The ubiquitous mindfulness meditation is also beneficial.

And speaking of sleep, it is time for me to toddle off to bed. I got a lot done today and have a lot to do. Still, all things in moderation. If I pace myself, I can get it done.

Oh, and the volcanic eruption and the reindeer and all that? No sense worrying about the future. It distracts you from the now. The volcano will erupt if it chooses, but if it doesn’t? My husband will be really disappointed.

written 8/31/2016

Continue reading “Grandma’s Reindeer”

Waiting for the Go

I got that question again: when are you going for the clinical trial? When I said maybe January, I got the same response. You know the one: “But you must be losing vision all of the time!” Probably. Not very fast, but probably. Not sure I needed to be reminded, but thanks for caring.

Time is moving along rapidly actually. I am now 63 years and 5 days old!? Fast week this. I have noticed the birds are moving in flocks and it is getting dark earlier. My summer is starting to fade. I MUST be getting closer to when this accursed study is going to launch.

But then the next thought is right back to how many RPEs do I lose everyday? What is the other countdown here? Do I want that countdown to go so fast?

I am doing my distraction activities. I worked seven hours today. Pretty much the same number of hours every other day this week. I went to exercise classes three evenings and swam tonight. I am busy!

Kate Sweeney, featured in a Times magazine article on waiting said that distractions did not work in her study but it sounded like her subjects were actively pushing away worry with their distractions. You cannot not think about something by telling yourself to not think about it!

Sort of like: “don’t think about a blue elephant!” Yep, all sorts of thoughts about lovely hued pachyderms out there right about now.?

My distracting involves doing things to do those things. It probably works better. I try not to say things like “I’ll swim so I don’t think about my eyes.” I just go swimming.

Sweeney did not find high self-esteem to be a bit helpful. (I could have told her that!) However, optimism was a help as was being comfortable with uncertainty. She also found that anticipating failure did not help with waiting but helped with dealing with the final outcome.

I guess if you are screaming “failure is not an option!” It is a little hard to get yourself together after you do fail.

A lot of worry and anxiety was also found to make dealing with results easier. The worrywarts started back on task faster if they lost and were more relieved if they won. It is nice to know anxiety about this sort of thing has some benefits.

Sawyer’s article came back around to endorsing what appears to be the panacea these days: mindfulness meditation! Nice to know we are on the right track but it would have been nice to discover some sort of new revelation here!!!

So I wait. My vision loss and medical science are in a foot race. The outcome is uncertain but I remain optimistic. Now I guess I walk the dog.

[If you’re wondering about the title, it’s a ‘play’ on the title of a play by Samuel Beckett “Waiting for Godot”.]

written 7/22/2016

Continue reading “Waiting for the Go”

Boot Camp

Waiting for a ride here. Looking through the allaboutvision.com site. Some interesting articles.

All About Vision is a decent site. That is my first point. Second point? Never have nothing to do. Waiting for people can be deadly when you have nothing to do. Third point: be ready to jump up and run when they finally do get there. Make sure whatever you are doing can go away in 15 seconds or less.

So that is my visually impaired lady wisdom for the day. Back to all allaboutvision.com. They have an article saying physical health, cognitive ability and emotional health need to be considered when dealing with the visually impaired. I really want to say “no s***” and label it a no brainer, but maybe people really don’t realize how important those factors are to a good adjustment.

Total human being here. The days of believing in the separation of mind and body are long gone.

Sort of like PLEASE in DBT. Take care of your health. If you don’t maintain your ‘vehicle’ you are going nowhere. There are plenty of data about the benefits of staying fit and strong. Vision loss is plenty. I, for one, do not need to add heart failure or diabetes to the list.

There is not much you can do about exceeding the smarts God gave you, but you need to remember what was given to you is actually a range. Biology sets the range and the point on that range is determined by the environment.

The point you are at can be up to you. Try to function towards the top of that range.

Don’t quote me but I think I read something like 80% of what we learn comes through vision. The flow of knowledge has been blocked for us. We now have to actively work on learning and staying sharp.

Emotional health, read depression and anxiety, can be a serious factor when you are visually impaired. We talked about loss before. Don’t let anyone downplay it. Vision loss is a death. Grief is natural. Depression is not uncommon. The number I read was 30% of people with vision loss are depressed.

Anxiety is pretty natural, too. My panic attacks were not fun but they could have been predicted. The article said that people who only have AMD in one eye are often more anxious because they are waiting for the other eye to fail. Will today be the day? Will today be the end ?

So do these factors truly affect your resilience? Duh, yeah! Therefore, it is time to go walk that mile. Solve that puzzle. Accumulate positives by doing things that make you happy.

This is AMD boot camp. Let’s get prepared! There is a campaign ahead.

Continue reading “Boot Camp”

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