My Case of PTSD

There are entire parts of the City of Los Angeles to which I will not go under any circumstances.

Downtown LA is not one of them.

Exploring Fabulous DTLA.

Exploring Fabulous DTLA.

One day, in a shop at the Row DTLA, I found... wait for it... a genuine, antique Edwardian garment, and I will not say what I paid for it, which was so little I know for sure God exists. I would have paid many times more, as the Edwardian era is my favorite time for fashion. I did not even know I could dream of possessing such an item. I was speechless.

Then I cried happiness over my luck and the sheer beauty of it. So amazing to touch and try on, I wondered about the life of the woman it had belonged to over a hundred years ago, and how it came to be here, in a semi-abandoned industrial park, east of Downtown Los Angeles, just off skid row. It is damaged, but I think I will leave it that way and not risk repairing it. That is my thought about some of my joints.

Look at that embroidery! Those sleeves!  Swoon!!!!!!

Look at that embroidery! Those sleeves! Swoon!!!!!!

This is the most amazing blazer I have. In the Edwardian era, a woman of means could not even lift her arms, as her clothing was made to prevent this. No need, servants did all that reaching and lifting for you. They even dressed you and brushed your hair. Wow, would that have made your Ehlers-Danlos worse. You must keep moving with this disease. Once you give up an activity for pain, you might never be able to do it again, unless you start injecting insane amounts of Vitamin C (have you read my blog?).

Hang out with us on the Facebook support groups. Perhaps you will see a post asking for clever suggestions for an easier way to brush your hair because doing it hurts your neck and shoulders so much.

But that would not be clever at all. Keep brushing your own hair. Otherwise, you will get even weaker, and basic tasks become even more impossible. That is a dangerous road to go down. Undiagnosed, with no proper medical advice, in agony and total confusion because I could not think with all that EDS brain fog, I have been all the way down there. Injecting C brought me back (have you read my blog?).

Like the Victorians, the Edwardians loved a tight, ribcage-deforming corset. Even with my narrow skeleton, I cannot close this jacket. For it to fit properly, I will have to get a couple of ribs removed, which will be totally worth it. I will try losing 25 pounds first, as that seems easier, although probably just as painful. I will keep you posted. In the meantime, I can style it with a silk blouse, leaving my Edwardian jacket open.

Getting around Los Angeles, if you are me.

There are entire parts of the City of Los Angeles to which I will not go under any circumstances. Where I spent time growing up is The Forbidden Zone. I never go there. Never, not for anything.

Then there is The Gray Zone, the areas surrounding the areas to which I will not go under any circumstances.

The Gray Zone is trouble, but not like The Forbidden Zone

I brace myself when I go into The Gray Zone, not by choice. It as an automatic reflex from entering the past. Time travel really is possible. 

The toll I pay is only deep feelings of confusion and sadness, which generally do not take me down. They just drain me. But it is perilous terrain. Certain blocks, certain landmarks impact me as if they were The Forbidden Zone, although they are tucked away in The Gray Zone. Would someone please clear the landmines. How funny to think that they are only in my head. That is not how it seems.

Getting around Los Angeles is a problem. I look up addresses. How far west is it? How far north is it? What will I get out of going? Is it worth the anguish? (sigh)

Parts of Los Angeles have changed so much that they are much more tolerable to me, for which I am thankful. Different buildings equals less pain. When extensive renovations occur in areas I have thought would be off limits forever, I can redraw borders from The Forbidden Zone to The Gray Zone. This makes me happy.

When geography revs up and launches a horror show of memories on me, it is likely I will end up lounging glamorously on my kitchen floor like the lady I am, depleting my liquor inventory while Mr. Pennington tries to coax me to wrap it up and go to bed. At these times, I simply cannot bear lying in the dark with my eyes closed. I cannot bear even trying. 

Mr. Pennington used to get so mad at my grand repose on the kitchen floor. Seems degrading to him, like I am giving up and giving in. I am not sure.

I find my IKEA kitchen floors comforting. The sub-flooring is up to code, renovated with building permits, not long ago. My kitchen floors do not shake like the unstable, un-insulated original mahogany wood flooring in the rest of the house. My kitchen floors are rigid, but soft and warm. It is a quiet and dark part of the house. 

Now Mr. Pennington sits there with me and maybe has a drink, too. Why not. He lets me cry it out for a while. But eventually he may start to fall asleep and sometimes I am still not calm enough. I send him to bed, and wait it out alone because anything is better than closing my eyes in the dark.

My psychic tumbles down the stairs, I have accepted. Managing a chronic, difficult and complex medical condition that may never go away, I can do that. No one better than me at that.

But really I would like to check myself in somewhere, a clinic where they could overhaul my faulty collagen gene, repair all the weak collagen generated from the rotten one, and also perform a traumaectomy. Hmmm, maybe get that rib removal done, too. Is there a place in Mexico that could do it?

When I am caught by surprise, an onslaught of flashbacks I was not expecting, it is deeply upsetting. I feel so victimized at those times, when I was not at all expecting it. That seems extra unfair.

There is a place I like to go in The Gray Zone which I would feel vulnerable if I even named. I thought I had become tolerant of it. I like being there even though it stirs up the past. It is a fabulous place in the city, with a nearby museum and my favorite restaurant, quite a bit different from when I was growing up, but still enough the same.

The last time we were there, I was so relaxed and felt so okay being me. I was overjoyed at my tolerance and my reaction. It was unbelievable. I never thought I could feel safe there, as if it really is now, not the then that never stops happening. I thought this is a resounding victory in my PTSD treatment!!! which I will write more about later, as I have been working on it for some time now. I was so so happy.

Then on the way home, a tsunami of feelings and memories swept in, pushing me over, making me lie down, drowning, dying. I was bewildered.

What happened?

I had been receiving unusual forms of neurofeedback, so effective in getting my nervous system to reset. You would not believe an invisible light shined briefly on the nerve endings of the fingers could do that. But it can, and it did. I guess that hypervigilance and anxiety actually has a protective purpose, keeping the past from taking me down. Whoops. 

Low level light therapy  resets the nervous system.

Low level light therapy resets the nervous system.

These are things that no one knows about me.

I never thought I would write about it here.

I hide my distress. I make it no one’s business. I have always kept my pain to myself. That is how I was raised.

I can hang on and melt down and drink too much later at home. I think that is the polite way to conduct oneself, no? I prefer to enjoy my friends, not bring all of us down. Not to put down Downers, but I definitely do not want to be one. It just isn’t fun or interesting.

This is how I make my life better for me, by hiding it. Sympathy and comfort have never been part of my life, and I do not know what to do with them. 

I appreciate when people keep what is personal private, unless we are intimate, because I can be rather busy with hiding my PTSD reactions and not have much left for your problems. 

I do not head straight for the kitchen floor.

I try to wait it out. 

I drink some warm water. 

It is best if I can go for an intense walk or do some exercise. I make sure I am warm and comfortable. I straighten up the house. 

I may write to my best friend who had seen my mother psychotic, who knew about my black eye, who knew the little I could say then about what was happening, which was not much, as it was all I had ever known so I thought nothing of it. My best friend made me feel loved and safe then. She treated me kindly and with courtesy. She cared that I was so tired and my knees hurt so much. She was the only person who did. She showed me there was something else out there to life, which might not have occurred to me otherwise as I was too sick. Her presence changed the course of my life.

I may write to her just to say hello or say that I am having a moment. 

I might work on my blog, sitting here, writing things that are too private.

I take 10 mg of propranolol to take if the nervous tension still won’t relent. Hit and miss on that one. After the hell of opiate withdrawal, I do not want benzos.

Why do I stay in Los Angeles? 

I stay in Los Angeles because Dr. Plance is here.

Dr. Plance has no patience for my selfie addiction.

Dr. Plance has no patience for my selfie addiction.

Once, going to see him, I missed the freeway exit and ended up driving by a place from my childhood of repeated maternal violence. BTW, where is the discussion on maternal violence? I am hardly the only one with a borderline mother. Maybe no one knows but us, how violent they tend to be with their children in private. 

This happened during my drug years, when opium or a chemical version of it never left my body, ever. My mistaken drive-by was only briefly shocking, thanks to morphine. I miss those days sometimes. Those drugs made everything seem okay, even the EDS pain they could not kill. The brief shock passed quickly, which never never happens now. I marveled at how close I was to Dr. Plance as a child, but then it took decades to find him! Simply amazing! How we ended up meeting is maybe the best story I have to tell. I should get to work on it. 

Besides, my PTSD is so extensive that it is not location specific, so why bother leaving LA? At a dinner party recently someone asked where I had grown up. As Americans do, she missed my subtle hints that I wanted to move the subject along, so I had to say the words I do not want to talk about it. It was such an awkward and embarrassing few moments that really dug in and stirred it all up inside me. I tried to keep it together. I did not refill my drink. I told myself I was proud of myself for keeping calm. You’re going to make it, Dummy! I promised myself I would not end up drinking on my own cuddly kitchen floor later.

But I did.