macular degeneration, macular, diagnosis Stop! – My Macular Degeneration Journey/Journal

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

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