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

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”


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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Sight Loss as a Challenge

Greetings. I have a dozen things to do and very little done. Maybe writing a page will help to get me motivated.

I read the pages from our two, most recent guest authors. Great pages from what sounds like two, good people. They both sound like people who took their vision loss as a challenge rather than a death sentence.

People who may have had to let their disability slow them down but never let it stop them.

Right now i’m pretty sure there are some of you who are bristling about that last paragraph. How can sight loss be a challenge? Challenges have a chance of being overcome. How am I going to overcome THIS ? I cannot accept this. I can never resign myself to going blind!

I touched on this a little before but I want to go into this concern in a bit more depth. Acceptance is not resignation and resignation is not acceptance. Acceptance is acknowledging a set of less than ideal conditions exist. For example: I am losing my sight. Acceptance also means acknowledging there are some things you have to give up or some new strategies you have to adopt in order to get by. Acceptance allows you to test the environment and make the allowances needed to move forward.

Resignation is not acceptance at all. Resignation means giving up. It is ripping your clothes and throwing yourself on your proverbial sword. Done. Over. Finis.

I know people who have given up. After all, “I is a psychologist; I is.” They moan. They complain. They lament the truly raw deal they have gotten from life.

What is left for these people? Not much. Not if they don’t learn to accept their situation. Resignation is a dark pit with no ways out. Acceptance allows you to see the branching tunnels with the glimmers of light at their ends. Acceptance makes room for hope.

There is a saying, “happiness is wanting what you have”. It is sort of a pop culture rendition of the Second Noble Truth. Yeah, Buddha again, and I’m a non-practicing Methodist, for crying out loud. What can I say? Siddhartha was one enlightened guy. I like him!

To refresh your memory, the Second Noble Truth says that desire, craving, wanting is the root of all suffering. In other words, pining after what you don’t have and you cannot get makes you miserable. Accepting the situation and being grateful for what you have left lightens the load.

This is not exactly easy. Looking on the dark side has survival value. Therefore we are pretty much pre-programmed to keying into and lock-on to the negatives in life. After all, your ancestors needed to see the wolves in the bushes, not the pretty flowers that were on those same bushes! Seeing the positive takes constant effort and a whole lot of – another DBT alert – turning the mind towards what you need to do to accept and feel better.

So kudos to Vickie and Bob. They seem to be actively working to accept, make the best of bad situations, and move forward. And encouragement to the rest of you. Accepting you are losing your sight will free you from hopelessness. It will free the energy you are using on worrying and fretting and allow you to use that energy to find ways to enrich your lives.

Remember accepting is not resignation and we who accept are NOT giving up. There will be an answer. We will find it.

January 13th, 2018


Next: Underwhelmed

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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

 

Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

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