macular degeneration, macular, diagnosis distress tolerance – My Macular Degeneration Journey/Journal

Meaning and Purpose

We are about half way through the distress tolerance module for DBT group. We are working on the IMPROVE skills, the second of which is meaning.

Viktor Frankl said (actually quoting Nietzsche I recently discovered. Learn something new every day!) – to paraphrase – if you have a why to live you can pretty much survive any how. Much of life is in meaning and purpose.

We put up with all sorts of nonsense when we know why, have a personal reason, we are doing it.

When something happens that rocks us at our very foundations – let’s say sight loss, just for devilment? – we can really start to wonder about our purpose in the world and the meaning in our lives. Some people find the problem takes up so much of their time and energy they cannot break free to do anything else. They have thought they have no meaning for their existence.

Frankl came up with an answer to that question. To quote (exactly this time!): “The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – under even the most difficult circumstances to add a deeper meaning to his life.”

In other words, sometimes the meaning that is in your life and that will allow you to endure is the grace in which you accept and deal with your fate. You don’t have to be finding the cure for cancer or saving orphans from raging flood waters, all you have to do is be an example of acceptance and endurance.

Acceptance and grace in the face of some truly crappy circumstances is the basis of several world religions. Frankl did not use the imagery of taking up your cross by accident. Some of the allure of the Easter story is Jesus’ example of acceptance and grace in a nasty situation. Being able to say “Thy will be done” is actually pretty impressive when you think about it.

So one of the things that any distress – including vision loss – can do for us is to give us the opportunity to develop grace, to transcend through acceptance (not approval or resignation). The meaning in your life becomes your quest to transcend.

Another thing distress can do is build mental and emotional “muscles”. I have one client who has endured heavy-duty mental illness. He amazed himself with how tough he could be. The meaning he gained through his trials was “I learned how tough I truly am”.

To quote Nietzsche once again, “that which does not kill us makes us stronger”. Or at least it makes us aware of the strength that was there all along. Perhaps the meaning in your pain is “I’m tough, I’m bad. Even this nonsense cannot defeat me.”

So, meaning and purpose can both be helpful in allowing you to accept and endure distress. Maybe your meaning is nothing more than showing yourself and the world you can weather the storm with grace and strength. That’s okay. “The way a man accepts his fate and all the suffering it entails…gives him ample opportunity…To add a deeper meaning to his life”.  Continue reading “Meaning and Purpose”

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.

Keep on keeping on. Continue reading “Keep On Keeping On”

The More I Like My Dog

“The more I learn about people, the more I like my dog.” – Mark Twain

“When things go wrong, don’t go with them. ” Elvis Presley

I am still kvetching. I got the new washer. Then I had to replace a well pump at my first rental. I cannot complain about the longevity of the pump (just the price!), but the washer?

What happened to the days that major appliances lasted more than five years? What happened to pride in what you produce?

Thursday morning I was arguing with my second rental tenant via text. “Yes, you owe me at least four month’s rent. I need a check!” Twenty minutes later I get a phone call from a woman asking me to give him a credit reference! Amazing. Reality check. Why would you list someone you owe money to as a credit reference?

This morning I was rushing out to the van. I threw my iPad Mini into my rolling crate. Later when I looked for it at the office, it was nowhere to be found. I am sick about this. There were photos and a lot of apps on that machine. The dispatcher at the transportation company could not have cared less. Would it have killed him to FAKE some sympathy? What happened to customer service?

As much as I generally love and praise people, there are some times I dislike them quite a bit. Quite a bit. Have a series of less than happy encounters and you can be rolling downhill on a slippery slope.

I have talked about the DBT concept of turning the mind a little bit but not in-depth. Turning the mind is a distress tolerance skill. It involves making the conscious choice to turn towards acceptance of a bad situation (acceptance being the first step towards change) or simply to turn towards positive functioning. A 2006 study found that approximately 40% of happiness may be determined by intentionally engaging in positive thoughts and activities. A statistic like that makes taking the happy path look pretty appealing. Even when you are not feeling it.

Realizing I was in a foul mood – and there being fresh snow! This weather is so flippin’ weird – I put on my cross-country skis and tried to ski. Very wet snow so I was sticking badly. A couple of times I had ‘platform skis’ with three inches of snow stuck to the bottom! Back to the house for the silicon spray and a second attempt.

This is another aspect of turning the mind: it doesn’t just happen once. Every time you come to a decision point, somewhere you could spiral down or turn towards acceptance and the more positive adjustment, you have to choose all over again. Again and again and again. Health is a choice we have to keep making over and over again.

So I accepted the snow was very wet and I needed silicon spray. Lots of spray and a few passes along the same path and I was doing my version of zipping along. No spray and no trail breaking? That would be not accepting reality and no zipping along. Zippy is good. Trying to move on ‘platform skis’ is not.

My tablet? I haven’t totally given up. I am going to talk to the drivers but I ordered a new one. The reality is mine is nowhere to be found. Not accepting that means no apps that I need to help me out. Accepting it may be gone allows me to try to solve the problem.

People? Oh, might as well accept it. Lots of them are idiots. Didn’t you know? ?

P.S. You can set up your iPad so it can send you an SOS when it is lost or stolen. It is in the systems menu. I will do that with the new one!  [Lin/Linda here: you do have to set this up BEFORE you loose your iPhone or iPad.  Click here for those instructions and also how to use the Find My iPhone app.  You can do something similar with Android devices, click here for more information.] Continue reading “The More I Like My Dog”

Stop Smoking Now!

This might be turning into the bad habit series for these pages. After doing the page on high BMIs and increase AMD risk, I looked up ‘hot topics + AMD’ and found smoking listed as numero uno. OK. Smoking it is.

I don’t smoke. Never did. It smells and is ridiculously expensive. Worse yet, it is bad for your health. And when I say health, I am including eye health.

BrightFocus Foundation in Smoking and Age-Related Macular Degeneration says smoking brings oxidants into the body. Chemicals can also damage cells. This activates the immune system which can further damage your eyes. These are ways cigarette smoke can increase your risk of AMD. I am sure you have heard cigarette smoking is the largest, modifiable risk factor for AMD. Those are the reasons why it is such a risk.

At least 4 of the Marlboro men died of lung cancer

The problem is it is hard to quit smoking! You have been doing it for years. Many of you remember the coolest commercials on TV were cigarette ads. Remember the Marlboro man? How about Joe Camel? And ladies, how can we forget those long, sleek, sophisticated women who sold us Virginia Slims. Could Joe Camel have steered us wrong all those years ago? Let’s just say Madison Avenue certainly did a number on us!

Anyway, no one ever showed us the Marlboro man using a white cane and hacking a lung out, so we believed the ads. Lots of us smoked and became addicted.

If you have AMD or live with someone who has AMD, you have been told to stop smoking. Quit.com has a whole list of suggestions on how to do this. They are reasonably good. For example, one of them even goes back to one of my favorite psychological theorists, Viktor Frankl, when it says know your reasons for quitting. Remember Frankl said if we have a why, we can endure any how? (“Those who have a ‘why’ to live, can bear with almost any ‘how’.”) Great philosophy turns up in the damnedest places.

I would add a few more from my DBT distress tolerance toolbox. Stop being sorry for yourself. Be mindful and practice gratitude. Be willing, not willful.

You are totally right. Life is not fair and now they really are trying to take away your one bad habit. It is for your own good. Stop dwelling on what “they” are taking away and think about all you have. Get involved. Substitute some fun activities for smoking, or better yet, do for someone else. Turn your mind. Continue reading “Stop Smoking Now!”

Fake It Till You Make It

Depression. We have hit this topic from several angles before. We are going to come at it again. Lin said there are a number of new people coming on and they are suffering.

These people are suffering with helplessness and hopelessness. Feelings of helplessness and hopelessness are closely aligned with depression. In fact, back in the 1960s Martin Seligman proposed the theory that depression is actually the result of helplessness. Beck has published a scale that measures hopelessness. The Beck Hopelessness Scale is a good measure of depression and also suicidality.

Hopelessness is the feeling that all hope has been destroyed. You are facing a dilemma that cannot be solved. Hopeless people see nothing positive in their future. They believe they are bereft of skills and options for getting themselves out of the mess they are in.

Ain’t they happy thoughts?

Anyway, some people feel that way when they get a life-altering diagnosis like age-related macular degeneration. They see nothing at all good in their future.

Beck Depression Inventory-click photo for larger image.

The Beck Hopelessness Scale is available online sans scoring. Take a look at it and if you agree with a fair number of the negative statements on it run, do not walk, to your doctor and ask him/her to help you get medication and counseling. You do NOT need to feel this way.

A good therapist should be able to help you deal better with what is ahead. Your therapist should help you to build positives and successes in life. Remember the old chestnut: nothing succeeds like success! What have you accomplished this far? What else can you expect to accomplish now? Go for it! Remember you are a survivor with many battles behind you. This is just one more.

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.

It may be that your greatest accomplishment in life will be being a positive model for others. Show them how it is done.

It doesn’t matter if you feel like a fraud. It is the brave front they will remember. Besides, fake it until you make it works, so you will get benefits from your award-winning performance!

I am going to refer you back to all of the pages on DBT distress tolerance for more therapy ideas. DBT ‘borrows’ from some of the finest therapies there are and puts them all in a neat package, so I suspect you will find something useful.

Beyond that, find a way to build hope in your life. Speak with your religious adviser. Pray. Plan a party or a trip. Encourage others along their roads. Save an animal from the shelter. Plant a tree. Invest somehow in a positive future.

Other ways of investing in a positive future? Volunteer for a clinical study. Write your story for this webpage. Help others in the same fix we are in! Believe.

Progress is being made every day. The Audacious Goals Initiative project is alive and well, as are similar projects in other countries around the world, and funding research. Individual drug companies battle each other to bring new treatments to the market. It will happen eventually. The breakthroughs are coming. Believe. There is hope. Instill it in yourself. Instill it in others.

Continue reading “Fake It Till You Make It”

The Waiting Game

Yesterday was my third appointment with Regillo. Quite frankly I was hoping for great things. Hoping I would get a definitive answer and it would be positive! No such luck. My ‘answer’ was another “maybe”.

What criteria are they using? No clue. I was told my eye condition certainly qualifies me. Beyond that, I got no inkling of what I need to do to move up the list.

After a year and a half, I am getting more and more frustrated and antsy. If there is a way to become a prime candidate, I don’t know what it is.

Anatomy of the eye-click on the image for more information

I did learn a few things. Contrary to what I read, the good doctor says everyone has a suprachoroidal space (SCS). [Lin/Linda here: the SCS is the space between the sclera (outer part of eye) and choroid (space below RPEs).  It’s important in both clinical studies Sue is referred to because both insert the stem cells into this space; more about the clinical trials below). Not sure why the difference between what I read and what he said. I know I read something about ‘forcing’ (my term) an SCS in guinea pig eyes. They did it by injecting saline solution between the appropriate layers. Maybe the difference is between having a space and having a medically useful space? I might be wrong but I got the impression the delivery system works better when there is fluid in the SCS. Maybe not. Anyway, everyone has one. I am just not sure if you need the fluid to accommodate the delivery system. If you really want to know, check with your eye doctor. I am still trying to piece this all together.

The next thing I found out was the Ocata/Astellas study may resurrect sooner than I was originally told. I had heard two years or more and now I am being told 2017. Sweet.

I was asked which one I preferred. The one I would prefer is the first one to come to fruition! I will be dancing in the streets to be asked to participate in either one of them.

So that is where I stand now. I have been given two strong maybes. Is that a guarantee I will get something or do two nothings equal nothing? It is driving me crazy!

So back to practicing my distress tolerance skills. I have to ACCEPTS my situation. Engage in activities and contribute to others. I have to compare my situation to those of others and be grateful; things could be worse. Doing things to laugh will help me to have opposite emotions and I can push away problems I cannot solve at present. I can also have pleasant thoughts and intense sensations that distract me from my frustrations. It can be done. I have done it for a year and a half. I can keep on.

written 12/16/2016

Continue reading “The Waiting Game”

How Am I Supposed to Get Home?

Vulnerability. I guess this is a feeling many of the elderly and disabled have, but I do not like it!

What brought this up? Yesterday. Yesterday stunk! There was a series of unfortunate events that once again drove home the point I am not the queen of my world. Maybe not even a princess.

School had a two-hour delay. Bad roads. I had been told the transportation company would make accommodations for bad conditions. Apparently not the case. They wanted me to go in early as usual. No clue what I was supposed to do if I got there and they decided to close for the day. How was I supposed to get home?

My husband took me but he has been sick. It has been aggregating another medical condition he has. He says I worry about him because he is my back-up ride. Well, there is a grain of truth in that. Also not sure how I am going to manage my life and his needs if he is down and I am blind. Best not to worry about now. Put it away if you are not able to deal with it in the here and now. DBT distress tolerance skill.

Then my ride home, who has been totally reliable for the past ten months, forgets and leaves me! She came back for me, basically wasting an hour of her day, but I had limited options and she felt awful. Just the same, there was a certain sinking feeling associated with the whole thing. I really felt lost. The world can quickly go to Hades and there is not much you can do about it. Vulnerability.

So what exactly can be done? I found all sorts of stuff about dealing with emotional vulnerability a la DBT but very little about reducing actual vulnerability. I am talking about the real deal here. I want to be less vulnerable!

What I found was actually on a disaster website…and yes, there are times I think AMD qualifies. 7 Ways to Reduce Vulnerability and Prepare for Disaster suggested knowledge. Know your risks and know your options. Once again, have plans B,C and all those other letters.

That leads to their second suggestion which is having a social network. There is strength – and flexibility – in numbers. Have a number of people you can depend upon. Whom can you call for rescue?

Remember when you have run through your personal resources, there are always community resources. Whom can you trust to save you? Under what circumstances? Police and fire departments have responded to plenty of calls from people with lesser needs than, for instance, being stuck ten miles from home and having no way to get there. Know the non-emergency number of your local community services and, when all else fails, call. You might not get a ride in a police car, but they should know which church or social agency would be willing to come to your aid.

That taps into another suggestion: be adaptable, and creative. If the usual solutions don’t work, try the unusual.

I cannot really see how I can bend two of their suggestions – impact avoidance and mobility (mobility problems being a huge part of this mess!) – into being useful to my dilemma, but I might be able to use the last one, subsistence. The article suggests having go bags for natural disasters. Might be an idea for my situation, too. I try to make sure I am not stuck without my phone. I carry cash and at least one credit card. Packing a lunch and a change of underwear might be a little extreme but not unheard of. The basic idea is to have resources.

Not saying doing these things will eliminate vulnerability but they might limit it some. At least I feel a little better about it. How about you?

Continue reading “How Am I Supposed to Get Home?”

Bingo!

I just came from a three-hour, Bingo benefit for the teacher who has cancer. It was an excellent turn-out. 150 people. There were 75 items for the raffle. This is a good area with good people.

Comparison skill. Remember ACCEPTS of distress tolerance?  People do not have to help me pay my bills so I can concentrate on trying to save my life. I am a ‘mature’ (yeah, sure) adult who could retire on state teachers’ disability and social security now if needed. Life waited to bite me in the butt.

And compared to what she has going on, AMD is a little nip. Comparatively speaking, I am just great!

Second distress tolerance skill: contribute. I paid my $20 and played Bingo. I spent $10 on raffle tickets. The same raffle tickets I had actually purchased and donated. Contributing is a way of forgetting things are not so great for you either. It also makes you feel like you are in the fight, even if it is not your particular battle. In other words, I cannot cure my eye problems, but I can help this teacher get travel money and grocery money and whatever she might need to pursue her cure.

To quote from the Mental Health Foundation, altruism is associated with all sorts of positive things. They include a decreased sense of hopelessness, less depression, increased self-esteem and better physical health. Altruistic people even have better marriages.

Berkleywellness.com tells us altruistic people have longer lives than people who do not practice helping and giving. Some of the theorists thought this was due totally to the social engagement factor.  Not so. Just the interaction is helpful, yes, but at the end of day, being the one doing the helping has the greater benefit. Something to do with having a purpose in life. We circled back around to Viktor Frankl again. Remember “if you have a why, you can tolerate any how”?

So altruism is good stuff. Now moving on to perhaps more frivolous topics, I put an Ott light at the end of my ironing board. I think I am doing better in seeing colors with the increased illumination. At least I matched today. Hopefully this fix will work for a while. I hate being mismatched!

Bingo. I had not played in years but it went OK. Most of the time I was playing four cards at one time. My friend was sort of looking over my shoulder. In 20 games she corrected me one time. Not too bad.

We used the disposable, paper cards and dabbers. I could see the numbers with bare eyes but I experimented and my handheld reader would have been an option as well. Not so much the magnifier on the iPad. For that I would have had to bring the Justand. Too many wobbles over three hours.

One of the issues I had was dealing with the different layouts of each card. Having a few cards that were consistent game to game would have been nice. I looked guess where [Lin/Linda here: starts with an a, followed by amazon.com ::smile::] and large print Bingo cards are about $4 apiece. You can also avoid the Bingo chips sliding dilemma by paying significantly more and getting a plastic board with sliding panels on each number. I cannot believe anyone would object to your bringing your own cards. It is not cheating.

So how did I do? I did not go “Bingo!” but I did win a turkey fryer in the raffle. I brought it home to my husband but he doesn’t want it. Probably re-gift it to another raffle. Does THAT come under the heading of altruism? Maybe not. Continue reading “Bingo!”

Stop!

By now you are probably seeing a theme in the last few pages. All of the battles are pretty much over. I have my assistive devices and I am working. Transportation is pretty much set up. Not many worlds to conquer right now. Into the long haul of living with a disability and it is a constant, nagging ache in the tush!!!!

I say ache, not pain. You can contradict me if you chose but at this stage of AMD, the damn thing is an irritant. Just enough to interfere with my functioning but not enough to stop me in my tracks.

It is that niggling little frustration that sets me on edge but does not send me screaming. Maybe the screaming comes again later. Hope I don’t get there.

Which brings me to my point for this page. I am obsessing on the clinical trials. I want to get moving. I am a type A personality. If there is a problem, you fix it. You don’t wait around for over a year. My first referral to the research team was August, 2015. I was ready to go then!

I use my distress tolerance skills. ACCEPTS is described in my pages. I do my activities, contribute (and bitch and whine and complain and even nag) through this website and my work and I compare. I do things opposite to my emotion, push away and use thoughts through refuting and reframing. I even use sensation through some tough exercise routines.

Usually they work but, like I said, recently I am obsessing on getting this show on the road!!!! Intellectually I know my irritation level will have zero, zilch, nada effect on what happens with the study. I know there is no amount of wishing and obsessing that will make the process go faster. After all, “if wishes were horses, then beggars would ride.” (Where did I get these things??? Do you notice people don’t use proverbs any more? I think it really is a loss. I know some fun ones…….but I digress once again ?)

Anyway, I have decided to try some thought stopping. Some of the literature says thought stopping does not work because of my “blue elephant” ? thing. You know, you cannot not think about something if you tell yourself not to think about it. However, Sherry Ankrom writing for verywell.com adds some techniques such as observing thoughts and replacing them with affirmations rather than just suppressing the negative thought. When she observes an unwanted thought she does not just say “stop!”. She replaces the thought with something positive.

E.g. “This waiting is driving me crazy. I am making no progress at all! Things are at a standstill!” Notice the thought. Say “stop!” and replace it with something positive.

Just because you cannot see progress does not mean things have stopped. There is a lot going on behind the scenes. This will be extremely financially profitable for this company. They want to get things going as soon as possible, too. You WILL be called.

Hopefully this will help a little bit. I like forward momentum and being in the doldrums, becalmed as it were, is driving me crazy.

If anyone has any other ideas for surviving down time let me know. The best thing I have found so far is to fill that time but maybe you have some other ideas. In the meantime, I am going for a haircut.

written 7/24/2016

Continue reading “Stop!”

Helping Myself

AMD is a long-term distress to be tolerated. I have been using my distress tolerance skills to get through day-to-day. The one I like and use a lot is activities. I like to keep busy.

However, since my husband is incapacitated, things have gotten harder. I might be a bit too busy. Just as an example, I have the added need to visit him in the hospital but I have lost a major source of transportation.

I have FINALLY been approved for the public transportation. They have a weird schedule, though. I could only go to the town where the hospital is early in the day and could only get a ride home before mid-afternoon.

After that my coach apparently turns into a pumpkin. Don’t any of the people riding this service have lives? Apparently not.

I have made reservations for rides to work Thursday and Friday. It is against my better judgment to start with something important like that. I have the terrible feeling I am going to be late even though my pick-up time is a full hour before my work day starts.

I have to take some of the burden off of my friends, though. They have been incredibly supportive during this crisis but these are extra trips are out of their way. I know it will become vexing. I love my people and I believe my people love me but I cannot just collapse and expect them to totally support me.

God helps those who help themselves, I have been told.

Yesterday my friend and her husband took me kayaking. Yes, an activity but also a ‘pushing away’ distraction. Once I was on that river I mentally put away everything that was happening on shore. It was a very nice hour.

My friend had volunteered to drop me off at yoga but I declined. I could have gotten a ride home from there but I decided not to go. The Beastie Baby had been spending too much time alone for one thing. I had to go home and ‘contribute’ to her. Taking care of others is a good distress tolerance skill.

I also had to take care of myself. I have been dropping weight on the ‘macular degeneration diet’, unable to get to my sources of Chinese take-out and ice cream. These past few weeks have been worse. I have not been getting much to eat that wasn’t ‘junk’.

So, ignoring that it was after 8 pm and the fact I really did not want to cook, I made myself a nutritious meal. Semi-proper eating, good food at a bad time. It is the one E in PLEASE.

After that it was a hot bath and off to bed. Soothing through touch and proper sleep. That is the S in PLEASE, of course.

Feel guilty about taking care of me? Nope. Yes, I could have worked the phones and begged people for rides to the hospital. It is walkable in about 90 minutes, I could have put on sturdy shoes and walked. The problem was, I was already stressed and tired.

The only way to contribute and support others is to support yourself first. A caregiver who collapses from self-neglect cannot support others. Last evening I just took for me.

written 8/17/2016

Continue reading “Helping Myself”

Busy, Busy, Busy

Saturday and Sunday were nasty, rainy and cold. While I got up and went to Zumba Saturday morning, that was about the only structure I had all weekend. I pretty much goofed off the rest of the time. I did little substantive work on Saturday and even a little less on Sunday.

This was not me. This girl can rock a to do list. I thrive in crazy busy. My days fly when one task or obligation flows into another.

It got me thinking about lack of things to do. Lack of outside structure. Some people crave days they have no obligations and need to do nothing. That sort of scenario scares me to death. It really scares me if I think of 30 years worth of that. Yikes.

So, one of the ways I cope is to stay busy. Activities are a distraction skill in DBT speak. They come under distress tolerance. I talked about that.  But what am I going to do someday when work is done and my hip won’t hop? What will I do when I have too much free time?

Understanding Newton’s laws of motion is actually helpful here. They aren’t just for physics any more! An object in motion tends to stay in motion. An object at rest stays at rest….unless an external force is applied to it.

If I don’t want lethargy to set in, l need to keep going. If things falter,  I need to apply an external force.

A way to apply an external force is by establishing habits and routines. In speaking of recovery from addictions, the National Institute of Health declared habit and routine to be good ways of avoiding excessive free time. The addict does not need free time because he may fill it with abusing substances. If I am upset and have spare time, I fill it with negative thoughts and worry. Not a plan.

The paper from NIH goes on to say establishing routine helps you feel more in control and build confidence. They suggest a regular routine that includes self-care (eating, sleeping, hygiene), a daily practice like exercise, meditation or prayer, meals, chores, etc.

One of the things I like about routine and schedule is I always know what is coming next. You avoid the fumbling and sinking feeling of being at loose ends. Like I said before, when I am at lose ends I think too much.

The NIH paper also talks about balance. They talk about deciding how much time you will dedicate to each of the items on your activities list.

I think that is a fantastic idea. I started a variation of that idea in my own life years ago. I based mine on values: learning, nature, exercise, friends, etc. I try to do something related to each value each day. If I realize I have missed addressing a value, I purposely include it the next day. Sort of keeps things from going too far in one direction.

Activities, routine, balance. Good stuff for coping.

Continue reading “Busy, Busy, Busy”

Decisions, Decisions

Things are starting to look up with work. Last week and this week I am up to four days. With a little extra effort I might be able to get back to a full week.

People have suggested I retire. Fortunately, those people have not been my bosses! I might have to retire whether I wanted to or not if that were the case. We are talking well-meaning people who see retirement as my best option. But is it?

Truth be known I could make more collecting my disability pension and applying for social security. Financially I would probably be better off.

But finances are only one piece of the puzzle.

[Note to our friends around the world-our options for retirement are quite different & difficult for us to understand let alone explain it to others!  When you read the words ‘disability’, ‘pension’, ‘retirement’ and ‘social security’, they are related to a time when one stops working and receives an income from somewhere. Got it?) If you’d like to tell us about the retirement system in your country, please leave a comment.]

Distress tolerance, one of the DBT modules, suggests that when you are in a quandary you should look at pros and cons of your options. What are the pros and cons of my working?

Cons would be I am pulling in mini-money as compared to what I was pulling in and as compared to what I could make retired. I have to spend time going to work when I maybe should be vacationing and seeing things before I am unable to see them. I am running people around hauling my sorry self to work. Those would all go in the con column.

Pros would be things like I promised BVS and a lot of people I was committed to working. They have invested time and money and effort in ME and I owe them an honest effort.

Number 2:  I have yet to tap into my financial reserve. We can live conservatively and still build credit towards a better pension and a better financial nest egg. This is particularly since I buy our health insurance through a group plan at work. [Here’s another topic where our countries different greatly.]

And no, I am not putting off living to guarantee a better financial future in my old age. Did you look at the crazy photo gallery Lin posted?  I have lived well.

Number 3: I am needed. Now maybe they are blowing smoke up my skirt and maybe I have delusions of grandeur, but I think there is a place for me in the work force. I have some skills and I am capable of contributing.

Number 4: I like my job. I really do!

Number 5: Leaving my job would limit my social interactions and I am a social animal. Not seeing people everyday would be deadly.

Number 6: What would I do with myself all day? Write posts about watching the grass grow? You know, that green stuff I cannot see so well.

So, doing a basic pros and cons list sort of confirmed what I have been thinking all along. Keep working. Wait it out. Reassess and do another pros and cons list down the road.

Pros and cons list are a nice way to examine all of the factors. They allow you to make more logical decisions and avoid distress.

Continue reading “Decisions, Decisions”

Crazy Like a Fox

The day comes for me to go to my second appointment with Regillo. I ‘dress for success’ for these appointments. Some people may think putting on a professional-looking skirt and pantyhose and doing my makeup for a doctor’s appointment is a little crazy, but I think of myself as being crazy like a fox.

I ‘dress for success’ for the appointment with Regillo. Some say I’m crazy but I think of myself as crazy like a fox.

I can be a manipulative little thing when I want to be. People think of manipulation as a bad thing. It has gotten a bad name because people think that manipulation is always for the agent’s own gain and always hurts the person who he (or she) is trying to manipulate. That is far from the truth. There is something called  ‘positive manipulation’. Your mother used it on your when she told you “here comes the train! Open the tunnel!” so that you would eat your smashed peas. You have used it yourself. We just don’t like to admit it because manipulative has been paired with words like evil and conniving in our culture. Every one of us is manipulative. Some of us do it with finesse and some are heavy-handed. It is simply a matter of style…and training.

DBT Interpersonal Effectiveness Skills teach us that as long as you are not hurting others, not being dishonest, etc, using finesse and certain strategies is perfectly acceptable to try to get what you want. The goal of interpersonal effective is getting someone to do something for you and that person feeling good about having done it.  Win-win. And yes, it is positive – gasp – manipulation.

As long as you are not being dishonest or hurting the other person, manipulation is a perfectly acceptable skill according to DBT.

Another reason I dress up is related – sort of – to the IMPROVE (another acronym) the Moment Skills of DBT Distress Tolerance. I am trying to improve the way I think of myself and the situation. Putting on ‘good’ clothes reminds me I am a professional and have a few strong points. The saying is “clothes make the man”. They also make the woman.

“Clothes make the man” and the women. I’m reminding myself that I am a professional and a few strong points.

So, I dress for success because whether anyone else realizes it or not, this appointment is a job interview. I am interviewing, once again, for the job of lab rat.

I have been anxious about this appointment for days. I am not sure what the decline in my vision will mean –am I no longer qualified for the study?

After the usual round of screenings by technicians, I finally rotate around to the man himself. Regillo confirms there has been significant cell atrophy – read ‘wasting and death’ – since I last saw him in August. He calms my fears that I may have done this to myself. No, this was a natural progression of the disease. No external factors such as sunlight reflected off of the snow or my high blood pressure would have caused this to happen. This is good. I can now at least get rid of one concern. I have been declared not guilty.

Regillo calms my fears that I may have done this to myself. I have been declared not guilty.

Just the same, I still have the worry about the study. Will I still qualify? The study is for those with dry macular degeneration only and this rapid loss of vision suggests I may be developing wet AMD.

Regillo runs an IV and puts beta carotene in my veins. I daresay this is the first time I have ever mainlined ‘carrot juice’! Beta carotene is mostly Vitamin A and your eyes lap it up. By watching where the ‘carrot juice’ goes in your eyes and comparing old imagines with new ones, the technicians and doctor can see if my eyes have been creating new veins.

I daresay this is the first time I have ever mainlined ‘carrot juice’! It’s beta carotene & helps the doctor compare old images with new ones.

Thank God. There are no new veins in either of my eyes. I still fit diagnostic criteria for dry AMD and therefore the criteria for the study.

Regillo suggests I refer myself for low vision therapy – already done – and AGAIN referred me to the study. He suggested that he might be seeing me ‘downtown’. I replied he would definitely be seeing me downtown. Regillo just smiled. Or at least I think he did. Do you think I was too confident?

Regillo just smiled. Or at least I think he did. I still qualified for the study and I am confident I will be in it.

Written in March 2016. Reviewed September 2018.

Continue reading “Crazy Like a Fox”

Tech Talk

On one of my ‘out to lunch’ ladies’ excursions we stopped at our local cellular store. I had been having difficulty with my cell phone. Or perhaps I should say my cell phone was having problems with me. I was unable to read my text. I was calling people I had no intention of calling. It’s amazing how similar some names appear when you really can’t see them well.

I was unable to read my text. I was calling people I had no intention of calling.

Tyler took my friend and me under his wing. He got into the accessibility menu of my telephone and tried to make the font big enough for me to see. He tried to point out all sorts of exciting things that could be done with my Android phone. It’s rather amazing what is on such a small machine.

Tyler wanted to put TalkBack on my phone. I demurred. I had already had it on and had a devil of a time getting it back off again. A sweet young woman in Maine and I spent 10 minutes laughing together. We could not shut the TalkBack lady off! Every time the phone was jostled that accursed voice would tell me the time! Things got so bad I suggested the young lady make a house call to help me out. After all Maine is only 8 hours away and this was an emergency! Thank heavens, I was finally able to quiet the TalkBack lady before we needed to go to these extreme measures.

There are accessibility features on both Android and Apple phones. Some are more trouble than they are worth.

So why am I talking about my interactions with the cell phone people? Well for one reason, these encounters once again prove my point that there are wonderful people in the world. I truly believe most people will help if you give them the opportunity. It makes people feel good to help. This is particularly true if the person they are trying to help maintains a sense of humor. A strong sense of the absurd is helpful, too.

I truly believe most people will help if you give them an opportunity especially if you maintain a sense of humor.

Another reason I have for highlighting these encounters is they gave me an opportunity to use the DBT Comparison Strategy. You remember: that is the Distress Tolerance Skill that basically says “hey, things could be worse. Look at that poor guy!” OK, maybe not those exact words, but you get the point.

“Hey, things could be worse. Look at that poor guy!”

I was thinking about what my father had to help him when he had AMD. He made do with a hand-held magnifying lens. Twenty years ago that was pretty much the state of the art.

Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism?

There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.

I mentioned that I have always been an avid reader. Right now I cannot pick up a book or a magazine and get much out of it. However, I have read The Secret Garden in the last few weeks. How? Amazon has free classics to download on a tablet. I have a zoom feature on my tablet that allowed me to magnify the text. I may have had to turn the page at every paragraph, but I read the book.

I even solved the problem of ‘mystery novel interruptus’ that happened when I had to stop 30 pages shy of the end of a new releases paperback I had. Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. It will have to go to the office when I go back to work, but right now I can get away with trying it out on some things here at home.

The tech guy loaned me a CCTV which makes things you put under the camera HUGE.

The bottom line for this post? You have technical resources. Get yourself to your friendly neighborhood tech or phone store and ask for help. Devices you already own – a cell phone, a tablet – have accessibility settings. Ask someone to help you use them. We have more resources to help us than any generation before us. Comparably speaking, it’s a pretty good time to lose your sight.

You probably already own a device that has accessibility settings.  Ask someone to help you use them.

Written in March 2016. Reviewed September 2018.

Continue reading “Tech Talk”

Out To Lunch

So here I am in a holding pattern. Some of these things are like the Army. My father used to say his experience in the Army during WWII was a series of hurry-up-and-wait experiences. I find that true of all bureaucracies.

So, I am waiting to see Regillo again, Rock Star of Retinas and Wizard of Wills. I am waiting for my referrals for services to come through so I can get started on returning to a life that looks like the one I just lost and is “a life worth living” (a DBT Goal Definition depending upon whose life it is). Did I mention I have no, zero, nada, none patience?

I’m in a holding pattern. Did I mention I have no, zero, nada, none patience?

Here I want to send out kudos to people. Just people in general, although there are also some special people in the mix, too. I is a psychologist: I is. I get a kick out of people.  I love their strengths and their foibles (especially their foibles) and their warmth. I know a lot of people and, hard to believe, some of them actually like me. In the last month I would not have gotten along without my ‘peeps’ (or is that only the spelling for chickens?). Not only did Lin and Dave embrace this work of therapy and do most of the work to make it a reality, other people in my life have come through for me big time. My husband has been ‘driving Miss Susie’ all over God’s green acre, class members have been giving me rides to my exercise programs and people have been inviting me to activities. You know who you are and I thank you.

Thank you to all who have been driving me, inviting me, helping me. You know who you are.

I have become the ‘out to lunch lady’. OK, those of you who know me know I have always been a bit ‘out to lunch’, but these times I am actually eating. People are taking me to lunch and getting me OUT.  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.

ACCEPTS is a DBT Distress Tolerance Skill.  A is for Activities.  I go out to lunch, a lot! And other activities, too.

I have been working hard to maintain my exercise class schedule. I have begged and cajoled and pleaded for rides – often without the necessity for all of those dramatics – and I have volunteers who will take me. I have been to a concert and gone to play in the park. And, yes, I have been out to lunch, a lot!

Acute crisis (is that redundant?) or long-term adjustment to a truly crappy turn of events, the purpose of the Distress Tolerance Skills are just to get you through. They may not be pretty. They may not be elegant and they sure will not solve the problem but they get you through without doing any more harm.

More harm. A lot of what we do in lousy situations does more harm. The obvious ones are things such as abusing substances and beating up on the people we should be reaching out to. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

A lot of what we do in lousy situations does more harm. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

There are some cute little sayings in DBT that are easy to remember. One of them is “what we resist, persists.”  Another one is “acceptance does not mean approval”.  You don’t have to approve of a turn of events in order to accept that it happened. Trust me. I am very disapproving of what has happened to my vision.  However, if I don’t accept the reality of the situation, how am I going to make things any better? I could have denied that I cannot see well. Kept on driving and killed someone. I could have kept on working and making mistakes. That would have hurt clients and destroyed my professional reputation. If I resisted the reality of having a vision loss, the problems would have persisted and gotten worse. At least this way I am taking steps, working with a professional to hopefully allow me to see better.

If I resisted the realty of a vision loss, the problems would have persisted and gotten worse.

I will revisit the concepts of Distress Tolerance as we go along. Right now let me get back to the original concept of this posting: I love people.

One of the BIG problems with AMD for me is not being able to see faces from a certain distance. I had an acquaintance tell me I had walked right past her and had not acknowledged her. It had me in tears because I truly do not want to offend people nor for people to think I am a snob.

I am discovering that having AMD visual impairment is a dilemma. My vision is good enough that I can navigate pretty well. I appear to be fully sighted….and blowing them off. I considered finding some way of identifying myself as partially sighted but I have not come up with any good ideas. Wearing a sign appears to be in bad taste and buying a white cane would be disrespectful of those who truly have serious vision loss. I thought about those black, black glasses but my sense of pride and my sense of style joined forces and rejected that idea in short order.

A BIG problem is not being able to see faces from a certain distance.

The idea I have chosen is simply to TELL people. I am a talker and this is a small town. Word travels at the speed of light. I have also swallowed my pride and have gotten into the habit of  – when necessary – identifying myself as visually impaired. Bitter pill to swallow because it means changing my entire self-identification and admitting the tough girl needs some help. However, it has gotten easier and it does work.  People are generally pretty kind.

I appear to be fully sighted. I have chosen to simply TELL people.

One of the Cs in ACCEPTS is comparison. The bitter pill of admitting to a visual handicap is a lot easier for me when I do a comparison. Do I want to withhold the information and look ditsy and stupid? After all, the information is probably posted right in front of my nose. Or is a visual handicap a better reason? Ditsy and stupid or visually impaired? You compare. You chose.

Taking from another DBT module, Interpersonal Effectiveness, I want to say something about how to ask for what you want and/or need. Social scientists have discovered that simply giving a reason, no matter how inane, will make people more likely to do something you would like. It could be as stupid as asking to move to the front of the line at the snack bar because you want a hot dog. Works better than you would ever believe.

The DBT skill Interpersonal Effectiveness says that you need to ask for what you want and/or need.

Written in February 2016. Reviewed September 2018.

Continue reading “Out To Lunch”