Letting the Dust Settle

Good morning. Mildly frustrated….again. Suspecting this is the usual state for people with vision loss in the ‘mature’ years (and whom, exactly do we think we are kidding with that ‘mature’ business?😎)

The online dictionary gives the definition of frustration as “the state of being upset or annoyed especially because of the inability to change or achievement something”. Yep, that’s me. Upset and annoyed.

I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!

I got back to hip hop this week after three weeks of missed classes. Variety of reasons. But then Tuesday I ended up staying home because I had gotten the feeling I had overstayed my welcome with that ride. (Take the hint, girl!) Wednesday I was going to ride my bike to yoga in the park but I got out of work too late. Tonight I tried a different class, one the Y is offering in place of yoga, and really did not like it. Honestly! Niggling little frustration after niggling little frustration!

Then, of course, I feel guilty. I had arranged for transportation, but two people inquired how I was getting home. Either of them would have volunteered to bring me home. That is not a requirement. They are kind. How can I be so frustrated when I am surrounded by kind people? What is wrong that I cannot appreciate what I have?

Summer plans are starting to formulate. I am one of the most fortunate people I know because I have people willing to take me to yoga events, blues festivals and even into ‘The City’. [New York City, that is.] Am I thinking of that? Of course not! I am thinking about how I am going to finagle transportation! How can I get to the kind souls so they are not driving so much? How can I be less of a burden?

When I start thinking this way I start to get very willful. I dig my heels in and say things to my husband like “Fine! I don’t care! I will walk!” Yeah. 20 miles in the snow uphill…both ways. Problem is: I would actually try!

In DBT the question to ask someone who is being willful is “What is the threat?” What is it you are defending against when you dig your heels in and insist things be your way? Pretty good question because dollars to donuts I am defending against something!

In my case, I think I am defending against the loss of my lifestyle. The loss of my identity. Realistic fear? Certainly not for a couple of confused weeks. Best to let the dust settle. See how things shake out to use one more of my colloquialisms.

Of course, my style tends more towards blunt force than patience. I don’t totally embrace everything I teach. Apparently I also have some learning to do. Continue reading “Letting the Dust Settle”

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How Many Favors?

One of the problems with being a cockeyed optimist and a Pollyanna is I always expect good things and relatively easy sailing. When that doesn’t happen, frankly, I become perturbed. I HATE to be thwarted.

Last evening I started downloading Golden Prey (book by John Sandford) from BARD. It has stopped several times since then.

I think it has to do with too much in my iPad memory. My ability to clutter up my environment extends to technology and cyberspace!

Another case of “do as I say, not as I do”. Deleting books you have already listened to is fine. You can always get them again. FYI for you non-technical savvy folks, your devices will run faster if you do.

My schedule is changing for the summer and I have to figure that out. Transportation will only pick up until 7 pm. After that my coach turns into a pumpkin! (Of course, for some of the ‘lemons’ I have ridden in, that would be an improvement!)

I have been picking up signs a woman who has dutifully transported me up for the last 15 months has gotten tired of it and needs a break. Changing my schedule so that I can ride my bike at least some of the time and take up some of the rest of the slack with transportation should work. I also have a co-worker who has started to take some of the same classes and who has offered to haul me. Also another gym friend.

People truly are wonderful and generous but they are not saints. Problem becomes they hate to let you down and will keep on helping even when it is no longer convenient.

I am starting to think I need some sort of rotation system. I already try to limit how many times I impose in one week. I try to keep it under three rides – counting someplace and back as two – a week for any one person. Except my husband, of course. He drew the short straw when he married me!😜

Once again there needs to be some sort of etiquette book for this! Any ideas about the ride dilemma? How many favors for the old, visually impaired chick is too many?

Still haven’t got the new pool liner. Got that call at 7 am as the rain poured down.

And my frustration that you may actually care about….Aipoly, or at least the free version I downloaded, did not live up to its hype! My diet Pepsi bottle was “a wine bottle” (however, that is a thought!) and my glare glasses were “one string of headphones”. I got too close to my sandal when I took the photo so that was “a basket” although when I pulled back and tried again, Aipoly got it right.

Now, in all fairness, I am cheap. The word free can be music to my ears. There is an Aipoly version for slightly less than $5 per month. That one is supposed to be much ‘smarter’. Since I am cheap and not in need of such a service yet, and since I can never remember to cancel those damn ‘free’ trials, I’m not downloading it. If you are in need of such a service and can remember to cancel a free trial, try it and get back to us please.

Type at ya later! Continue reading “How Many Favors?”

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The Stuff of Life

Good morning. Fair warning; I might just ramble on this page. A bunch of little things happening. Nothing major.

Of course, little irritations are the stuff of life. I am also thinking they are more the stuff of low vision life.

I am waiting for transportation but I have no idea when they are coming. I got a call but the recording never clicked on. That meant anywhere from one minute to a half an hour. Better than yesterday. Yesterday they never bothered to put me on the schedule!

Fortunately my husband was able to take me. I seem to have a large number of ‘saviors’. Did I tell you a total stranger gave me a ride home from yoga? I was sort of stuck. The stranger told me she has been taking class behind me for six months. Couldn’t prove it by me.

That is a bit embarrassing. The next class also gave me a problem. I really wanted to talk to her but I could not see if she were there or not. What was I supposed to do? Walk down the back row staring at people? That would have been a bit weird.

I finally decided she had been told (and had observed!) that I am visually impaired. If she wanted to talk to me, she needed to speak to me first.

Why doesn’t someone write an etiquette book for these things? Miss Manners for the Proper Low Vision Sufferer!?!? There have to be some sort of rules! I get frustrated having to reinvent the wheel all of the time.

I got my CCTV back from the repair shop. I held on to the loaner a few days just to be sure all was well with mine. Also because returning the loaner was a semi-major event. Pack it up with all sorts of cushioning. That, of course, made it all a little too much for the box so one of us had to hold it closed while the other one taped. Then I discovered they had neglected to include free shipping labels so I needed to call for them. No to mention getting the bulky box out the door and to UPS!

(UPS will pick up. You can schedule a pick up by calling 800-pick ups which is 800-742-5877. However, their website does mention a ‘residential surcharge’. How much, no clue. We are the strong back and weak mind type and just always take things to the store.)

It would be nice if there were local repair options but I don’t believe there are. FYI, though, when I was not sure the company was going to be able to supply me with a loaner, I called Blindness and Visual Services. As a former client I could have borrowed one from them, quality not guaranteed. Pack that one away in your memory for a rainy day with a ‘sick’ CCTV.

Last thing for this post, I have my first visually impaired counseling client! I won’t say much about that person because of confidentiality. Instead, just a quick comment about my (of course!😜) thoughts on it. To wit: it is happening slowly but it is happening. Remember that stuff about God closing a door and opening a window? The stuff about not forcing your fate???? How about “build it and they will come”? There you go! We are building and they are coming. Cool. Continue reading “The Stuff of Life”

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They Get My Goat

Every once in awhile things just GET me. They get my goat – wherever the devil THAT saying came from! They get my goat ‘real bad’.

It apparently wasn’t enough my left scotoma got denser. I have been handling that – sort of. When I am waiting for a ride to class or walking the dog I have been checking it out and it is pretty opaque now.

I think that action is the visual equivalent of poking at a sore tooth – another old chestnut – and probably not good.

However I think I have discovered something doing it. If I want to see if, for example, a flowering bush disappears, and I want to look at said bush, I focus on a point nearby. I have to consciously put my poor, beat-up fovea on the bush to make it disappear. To me that means eccentric viewing has become a habit. There is at least one positive!

The second thing that has been happening is the weather. It has been raining for days. I am not only tired of the rain, I am just plain tired. There are biological reasons for it. Darkness leads to the production of melatonin and melatonin makes you sleepy. The problem really comes, though, when I am trying to drag myself through that melatonin fog and actually function.

School was Sleepwalker Central yesterday. Yawn.

Wondering if reduced light hitting the retina – or more precisely less retina to detect that light – would lead to being more sleepy. Can I expect to have less energy in the future? No one ever seems to have answers for my questions!

The other issue is people are driving me crazy! While there are people I am dealing with to whom I want to scream “Think! Can you do that? Think!” I am particular peeved with – one more time – the transportation company! Last week I was picked up at 4:55 for a 6:15 class.

This morning I was picked up at 7:05 to be to work at 8:30. Really!?!?!?! What do they think I am going to do when I am 1.5 hours early? Twiddle my thumbs?

I guess what insults me more than anything is the implication (I perceive) my time is not important. “Oh, she is just a visually impaired old lady. She doesn’t have anything better to do.” ‘They’ would say not.’They’ would say it has to work that way because it is a shared ride. I would not believe ‘they’.

Of course, my mind spins out to decades wasted riding the van or getting places obscenely early. I do the math. It would only take 16 days of 1.5 hours wasted to have squandered a day of my life! How dare they?

Problem is, this is my new reality. I bum rides from just about everyone I know but sometimes I get stuck riding transportation. It is what it is.

Tonight I got to the Y slightly more than a half an hour early. I walked to the cash machine and got some much needed cash. One job done. Maybe it is up to me to make sure my time is not being wasted. Continue reading “They Get My Goat”

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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?”

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XYZ Transit

I went to the doctors today, two of them. I have been trying to group my appointments. Since I have had eye problems and have to get rides, my doctors’ appointments have become events. Better to group them on one day.

Not sure where everyone came from at the ophthalmologist’s office. There was not a seat to be had! The aging of the population and the prevalence of vision problems in the elderly was apparent in that room.

Dare I say I was the young chick of the group? Of course I dare!😆

My ophthalmologist said he could not see any growth in my geographic atrophy – aka the divots – in either of my eyes. There probably is some but would require a more precise instrument than his own eye to observe. No noticeable change is good.

My vision was a tad better in one eye and a smidgen worse in the other. I think it was just random variation. Sometimes I am better at ‘cheating’ and using my peripheral vision and other times worse. Sometimes I hit what must be an intact spot on my retina and everything flashes into focus for a fraction of an instant. When it ‘catches my eye’ I try to look at it and it is gone. Real pain in the posterior. It was there and then it was gone.

My ophthalmologist asked about the clinical trial. Damn if I know. I have been enough of a pain in the posterior to the head researcher I have been promised I will be first called when things get moving…. whenever that is. Squeak.

I showed my ophthalmologist my new toy, the Justand. He was interested. Asked if I were going to the support group but then said I could probably lead the support group. Yeah.

A lot of research and adjustment over the last four months. I have learned a few things I could share.

My primary care physician is worried about my blood pressure. Might have something to do with the things that have been happening recently. He wanted me to stay a few hours and have my pressure taken over time. That would be a guaranteed way to get me to blow my top!

Going for the van to leave was actually scary. I was to be picked up at the main entrance to the hospital…..along with 11 million other people! So, I exaggerate but you get my point. It was busy. And 80% of the transportation coming up to the front of the building was white. The color of the van I was waiting for? White, of course.

I was flummoxed as to how to discern my van. I don’t see all that well, ya know. I put on my telescope glasses but with my eyes dilated I could not see even then. Too bright. I was on the horns of a dilemma.

I called the transportation people and – while concerned – they were not a lot of help. I was waiting for XYZ Transit and the van was white. Really??? No shit. She acted as if she had never had a visually impaired patron before. Don’t they have a protocol for finding patrons who can’t find them? Apparently not.

I finally just wandered up and down the line of vans. Practically putting my nose on the side of each one. My van was there. When I told my driver my concerns, he said he would have found me. Not sure how. I am new to transit. I have had a half a dozen drivers so far. They don’t know me. I don’t know them. Problem situation.

Still not sure how to work this out. My husband suggested a sign on a pole. XYZ Transit! Maybe I can be the lady in red or something. Look for the lady in red! Mysterious.

Just not sure. Any thoughts?

Continue reading “XYZ Transit”

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