A Stuffed Black Dog

I am practicing my DBT skills on myself today. Today was the day I was supposed to get a new pool liner. Supposed to being the operative words.

I have spent several years trying to extend the life of the old liner with gorilla tape! That one was always a bit of a debacle. I picked an installer at random – and did not find out he had been driven out of business three times before that until I was having problems. (Note to self: research tradesmen!) When hurricane Ivan came along and pushed up the bottom of my pool, I was not able to get a lick of help from that guy. My pool bottom had lumps with wrinkles radiating in all directions. I was dreaming about GIANT spiders living in the pool!😱

But that is not why I am practicing my DBT. Today was supposed to be sunny and 80 °F. It is 56 and raining. My pool is drained and there will be no new liner for a week. Frustrated, but it is what it is. No controlling the weather.

Also, why ruin right now thinking about the swamp smells that might (face it, probably will) be coming off the pool until we get the new liner in? My fussing won’t make it smell like roses!

One of our readers/member of our Facebook group recently sent some comments about her first injection for wet AMD. When I read what she had written, I realized in some ways she had practiced DBT! Other ways she needed a little reminder to do so.

The reminder first: the days before her first injection our reader spent a lot of time worrying and fussing. After she had her shot she was sort of upset with herself because it had not been as bad as she had envisioned. She had wasted a lot of time being in a tizzy about it all!

Yep. My pool may not stink as much as I believe it will. The only way to find out is wait and see…and don’t waste time and energy worrying about it.

Reality dictated our reader had to have her shot. Otherwise there would be bigger problems. Reality says I am going to have a swamp in my backyard. No avoiding it. Might as well accept it will happen.

Both our reader and I know what caused our respective messes. She has ‘bad’ genes and my pool guy got a bum weather report. But even knowing what happened, the causes are not under our control. No sense fussing or saying it should not be happening. Better to practice ACCEPTS and get through it. [Lin/Linda: Click here for one of Sue’s pages on ACCEPTS.]

And you know what I loved? Our reader practiced a self-soothing skill through touch! She took a stuffed animal (a stuffed black dog) with her to help her through.

Another DBT skill she used (whether she knew it or not!) was effectiveness. That stuffed animal may not have been a ‘proper’ thing for a grown woman to have, but who cares? It did its job and helped our reader through. Remember effectiveness is all about doing what the situation calls for even if custom (or snobbery!) says it should not be done that way. [Lin/Linda: Click here for one of Sue’s pages on effectiveness.]

So, thanks to our reader for letting me use her comments in a teachable moment. As for me, no sense sitting around waiting for the pool to stink. I am off to Walmart. Continue reading “A Stuffed Black Dog”

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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.

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

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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

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The Holiday Blues

My assignment is to talk about depression, specifically the ‘holiday blues’. I am going to go in the back door on this one, so bear with me.

My 25th birthday was the worst birthday I have ever had. I had it in my head successful people had it all together by age 25. Successful 25 year olds have jobs, spouses, houses. I had none of these things. In my head, I was a failure.

Relevance? I would suspect every one of you who is down about the holidays like I was down about my birthday is operating under a whole slew of myths.

Myths in DBT parlance are stories we have come to believe simply because it seems they have always been there. We assume they are valid because they are part of us. They are the ways we think things are. Period. The end.

So what are you telling yourself about the holidays that is getting you so down? My first guess would be something to do with holidays and family, yes? The traditional meaning of family is a bunch of people related by blood. If you don’t have blood relatives surrounding you, you cannot have a holiday; right?

I don’t think so. I have no siblings and no children. I have no cousins on one side and I am estranged from cousins on the other. Some people would call that tragic. For me, forgive me if I offend, it has been liberating.

I have been able to build my ‘family’ with the people I want. I spend my time with people I enjoy. You don’t have to have blood relatives to have family.

Thanksgiving day I have a dinner engagement with a friend. (Hubby is having a tooth pulled the day before. Ouch.) Whom could you have time with? It does not have to be on the actual holiday. That is just an arbitrary date on the calendar.

This person does not even have to be an established friend. You could go to an activity you enjoy. The day after Thanksgiving the Y is having back-to-back classes. I will be there for two or three of those, along with my fitness ‘family’. We are looking forward to it. What could you plan that you can look forward to?

There are as many myths out there as there are people to entertain them. What are some of the myths you entertain? How about “I need to do everything I always have done for my family! It won’t be a holiday unless I prepare a four course meal!” or how about “we can’t  have a real holiday on a fixed income!”

CNN has an article about 4 things you can do about the holiday blues. They are pretty basic but they work:

Seek social support, exercise, don’t compare yourself to others, and reframe your thinking. There’s more about these in the CNN article.

Finally, I would not be a DBT instructor if I did not remind you of the distress tolerance skills. Refer back to ACCEPTS in the archives. It does work. Continue reading “The Holiday Blues”

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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!”

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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!”

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Rated R

One of the DBT ACCEPTS, or distraction, skills is sensation. I have not been all that crazy about that one because the standard examples are things like holding an ice cube, taking a freezing shower or snapping yourself with a rubber band.

I don’t do cold and I generally don’t do pain. Those suggestions are not interesting to me at all!

But I have a confession to make: I may have been using sensation for the past 8 years and never realized it!

Quick review – in DBT  we use sensation to overcome strong emotions and urges. These emotions and urges may be so strong we feel the only way to deal with them is self harm or something equally as damaging. Sensation may be enough of a shock to the system to dislodge the thought of self harm.  I may not have mentioned it before but DBT was initially developed to help people who have volatile emotions and often engage in self harm. Part of the reason it works so well is it was developed to have enough power to help people with serious mental conditions.

So how do I, someone who does not have a serious mental condition (truly; believe me), use sensation? Is it good even if you are not thinking about suicide or cutting?

I mentioned I am back in yoga with ‘my’ yogini. I adore her. What I did not mention is that it is a sadomasochistic relationship. She kicks our asses and we say “thank you” and come back for more. I had a good buddy, a fellow student, who called our yogini his dominatrix.

You never thought this page was going to be X rated; did you?  No X, just R. The point is not that we are kinky people.

The point is we are being pushed to our edges in every class, liking it and using it to our advantage.

What made me think about it is this: I am sore and rung out. We did an hour of a very challenging power flow tonight. We moved! Asana to asana. Position to position. I am the oldest person in the class and really don’t ever expect to keep up with the youngsters, but I try to work to my edge. Better the bar be too high than too low.

“A man’s reach should exceed his grasp or what is a heaven for?” – Robert Browning. I like quotes; remember?

Anyway, I put forth effort. I challenge myself physically, emotionally and cognitively. I think about the sequence of the positions in the series. How the hey did she get from that position into THAT one????? (That one is T in ACCEPTS for thoughts, btw). And I practically never think of my problems. My yogini is giving me problems enough!

Sensation? Yep. I am breathing hard and sweating. My muscles are screaming and I am trying not to lose my balance. Right now I know my left arm is going to be very tender tomorrow.  We did some things I have  not done in a long time. I felt my arm ‘fail’ so I was not thinking about my eyes. Ouch.

Am I suggesting you go out and beat yourself up? Absolutely not. That is reserved for a few select crazies like me. But with the APPROVAL of your DOCTOR, you might find some exercise routine that is a little challenging, a little uncomfortable. Something that has you breathing a little too hard or stressing your muscles a little too much. Having a little good pain may keep you from dwelling on the bad/sad pain.

And if you cannot stress yourself physically, remember you have other options to shock you out of self harm and/or excessive stress. A cold shower is probably a possibility. Hot sauce may do the trick. Sensation is to shock your system out of thoughts of damaging actions and distract you.

Me? I have a perfectly good sadomasochistic relationships I can depend upon! Namaste.

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