Waspish Whatever-Day-This-Is: By “PTSD” I Mean “PTSD”

I hope this is coherent, because I’m having a lot of trouble focusing and thinking clearly. In the past twenty-four hours I’ve periodically been so dissociated I’ve had trouble keeping track of the day and trouble speaking. However, at the moment I’m calmer than I’ve been. Perhaps this is the eye of my emotional storm of anxiety.

As you may be aware, the East Coast of the US is facing a storm called Hurricane Irene. My sister-in-law is named Irene, but I bear her no ill-will. I just want to state that for the record.

I’ve written before about the ice storm two years ago that knocked out power — water, electricity, heat, phone — for a week during the winter, and how I couldn’t be evacuated due to my disabilities. And how I feared I would die. And how, in the aftermath, I suffered terrible losses, while in acute PTSD.

I did not have post-traumatic stress disorder (PTSD) before that experience. Now I do. This seems a hard concept for people to grasp. I’m not sure if it’s because people in general don’t want to hear about my anxiety, because it feels uncomfortable for them (perhaps a sense of helplessness that they can’t “make me feel better”?), or if it’s because it’s hard to grok that someone could have PTSD from “a simple power outage” — as opposed to more well-known causes such as military combat or sexual or physical assault or abuse.

For two reasons, I get upset when I don’t think people believe me or understand how freaked out I get at the mere thought of a power outage, let alone an extended one. The first reason is that I generally like to feel known and understood and believed. In this instance, I worry that people don’t believe me and instead think I’m exaggerating or hopping on some “disorder-of-the-month club” bandwagon or something. The second reason is that I think that if people knew that by “PTSD” I truly mean PTSD, they might be better able to respond to my distress in ways I find helpful, whereas there are very few people in my life who know how to do that now.

So, let me explain a bit about PTSD and why my situation is, in fact, actual PTSD, and why I think PTSD is especially rampant in the disability community. Then, I will offer some suggestions of things to say or do that I find comforting or supportive. If you’d like more information on PTSD, in general, this is a pretty comprehensive PTSD website, which provides this definition of PTSD:

Post-traumatic stress disorder (PTSD) is . . . an anxiety disorder and usually develops as a result of a terribly frightening, life-threatening, or otherwise highly unsafe experience. PTSD sufferers re-experience the traumatic event or events in some way, tend to avoid places, people, or other things that remind them of the event (avoidance), and are exquisitely sensitive to normal life experiences (hyperarousal).

Here is the difference between surviving an extended outage for someone like me, versus for most of the people in my town (who were not traumatized by the ice storm — many people actually said it was fun for them). This is a major difference, in general, between people with disabilities and people who are nondisabled, healthy, and mobile: I cannot escape. I cannot evacuate.

For one thing, aside from wheelchair access, due to my CFIDS/ME and Lyme disease, I need to spend most of my time in a quiet, restful surrounding, lying down in bed. For another, I have multiple chemical sensitivity (MCS), and the only other places that are MCS-accessible are the homes of other people with MCS, and they are as stuck as I am (especially if the also are mobility impaired and otherwise ill).

So, when “Rita,” the computer from my electric company calls to tell me that there might be “widespread power outages” and that “she” is calling me to take steps to get safe because I have medical needs reliant on electricity and should therefore prepare to evacuate, it is really not very fucking helpful. Thanks anyway, Rita.

The other issue is that I can’t do what most people do to weather a storm without power.

Let’s start with heat, shall we? I can’t tolerate wood smoke/wood stoves, gas, propane, or oil. The only heat source I can tolerate is electric. That is why being without power for a week in winter in New England was scary as hell.

Then there’s food. Lot’s of people during the ice storm cooked on wood or gas stoves. Obviously, I can’t do that for the same reasons I can’t use them as heat. Some went out to eat; obviously I can’t do that, either. So, you are probably thinking I should eat non-perishables. Well, that’s a problem because of my food allergies. I’m trying to think of which foods I can eat that don’t have to be refrigerated (until they’re opened). This is what I’ve come up with:

• Rice milk
• Hemp milk
• Apples
• Rice protein powder
• Semi-perishables like brown rice bread, cucumbers, and lettuce
• Organic plain cocoa powder
• Olive oil

That’s pretty much all I can think of at the moment.

Then there’s water. Because when the electricity doesn’t work, neither does the water. This is not so terrific in general, as I know from living with non-flushing toilets for a week, but it’s also a problem not to be able to wash my hands when I need to infuse my medication (via my PICC line) or give myself shots, etc. Which reminds me: My intravenous and intramuscular medications need to be kept refrigerated.

Then there are all the things I rely on that use electricity, like air filters and powerchair chargers and book-on-tape machines, etc. I certainly can’t read by candlelight because 1) I can’t read print books, and 2) I can’t use candles.

Another problem is that often, when we lose electricity, we also lose the phone. This is particularly problematic because 1) if I need something — like help, or someone to talk to because I’M FREAKING THE FUCK OUT — I have no way to communicate with the outside world, because I can’t drive, and 2) we don’t have cell reception where I live. Let me repeat that because it seems very hard for urban and suburban people to grasp: No. Cell. Service. No, really. No iPhones or smart phones or texting or any of that shit. I don’t even know how to do any of that.

So, maybe you’re thinking, “But it’s summer, so you’re not in danger of the cold like you were during the ice storm, and Betsy is around, so you’re not by yourself, so why are you freaked out?” People tell me this. They are trying to be helpful. I know they are, but I feel terrible when I hear it because I am translating what they’re saying as, “Sharon, you are a crazy, irrational nut-job. It’s just an outage. It’s summer. Calm down, you drama-queen.”

The problem is that I have PTSD, and PTSD isn’t rational. Rationally, I am aware that it’s summer and that I’m not in danger of freezing to death this time. I’m also aware that, unlike last time, I am able to get out of the bed sometimes. I know these things, but I don’t believe them because there is a part of me that went “Zzzt! Pop!” and broke when I thought I was going to die alone and cold in the dark two years ago. That part views the world like this:

1. I have electricity. Life is normal. I’m fine.
2. I don’t have electricity. I’m going to die.

So, how do I know I have PTSD? Well, it started with the triggering event:

Virtually any trauma, defined as an event that is life-threatening or that severely compromises the emotional well-being of an individual or causes intense fear, may cause PTSD. Such events [may] include receiving a life-threatening medical diagnosis, . . exposure to a natural disaster. . . .

It was a natural disaster, and it felt life-threatening to me, but whether it was or not, it definitely caused intense fear and compromised my emotional well-being. And I was already living with life-threatening illness, which certainly didn’t help the situation any.

The following three groups of symptom criteria are required to assign the diagnosis of PTSD:

• Recurrent re-experiencing of the trauma (for example, troublesome memories, flashbacks that are usually caused by reminders of the traumatic events, recurring nightmares about the trauma and/or dissociative reliving of the trauma)
• Avoidance to the point of having a phobia of places, people, and experiences that remind the sufferer of the trauma or a general numbing of emotional responsiveness
• Chronic physical signs of hyperarousal, including sleep problems, trouble concentrating, irritability, anger, poor concentration, blackouts or difficulty remembering things, increased tendency and reaction to being startled, and hypervigilance (excessive watchfulness) to threat

I have a lot more in the latter two categories than in the first one, although, when I’m triggered (if there is a blackout, for sure, or just if someone unexpectedly turns the lights off or if there is a possibility of an outage), I do have some of those symptoms. Mostly, though, I have the numbing, and then most of the things in the third category.

I think the reason this is a hidden issue is that most of the time, I’m not triggered, and even when I am, I’m usually pretty good at hiding it. Whenever there is going to be a weather “event,” I do my best to avoid hearing or reading about it. If people talk about the possibility of an outage, I get extremely anxious. I ask them not to talk about it around me if I can’t get away from them. But more often I play it off by making jokes and changing the subject.

If I absolutely can’t avoid hearing about it — as has been the case with this goddamn hurricane that everyone is tweeting about incessantly — I get flooded with anxiety, don’t sleep, can’t concentrate, lose sensation in my feet, have nightmares, and as a result of all this muscle tension and adrenaline, the next day I am having severe body pain, often immobility issues and migraines. My neurologically and immunologically impaired body does not take kindly to stress. It’s a hallmark of CFIDS/ME — emotional exertion kicks us in the teeth. Now that I have Lyme, any sort of muscle tension is repaid triple-fold.

Recently, we had a power outage that lasted under three hours, but it was at night. So, that meant suddenly it went from “normal” — with my fan blowing and my computer humming and all — to dark and silent. It was warm, there was no danger of my having hypothermia, and it was unlikely the outage would last for several days. Nonetheless, the second that the lights went out, my body was flooded with adrenaline. I couldn’t think. I didn’t know what to do. It took me about half an hour just to figure out how to call the electric company to report the outage. It wasn’t until I called the electric company and heard that my voice sounded weird and that I was having trouble catching my breath that I realized I was hyperventilating.

Barnum put his head on my lap, and I started to calm down, and that’s when I realized that my feet had gone numb and that my heart was pounding, etc. When the lights came back on, I was just flooded with relief — as if someone had poured a bucket of cool water inside me from the top of my head to the tips of my toes.

So, here are some factoids I found interesting from that site on PTSD: women are twice as likely as men to develop PTSD, and non-white people are also more likely to develop PTSD. Two theories as to why are

a tendency for individuals from minority ethnic groups to blame themselves [and to] have less social support.

This made me wonder about if similar issues might be involved for people with disabilities, since we also tend to be socially isolated and to internalize ableist beliefs that we are to blame for our struggles.

I also thought about how it applied to me since the immediate aftermath of the ice storm was that I lost almost all of my sources of emotional support. My best friend stopped speaking to me, one of my other best friends died, my therapist terminated with me, and my relationship with my other best friend — sister of the one who ditched me — became strained and distant. In fact, I had a lengthy nightmare this morning that was basically a replay of the ice storm, except that it was focused on my best friend who ditched me ditching me again. Then Gadget died. It was endless.

And I did blame myself. A lot. People in my life who ditched me made it very clear that the problem was me. They told me I was in crisis all the time, that I was emotionally difficult, etc. Well, yes, I was in crisis a lot because that was the nature of my life with multiple severe illnesses. And yes, some of the diseases that were untreated, or that became worse due to herxing, were making me crazy. I was not myself. So, yes, I was experiencing a lot of neurological damage that affected my moods and behavior, which was not only torturous for me but unpleasant for others.

So, all that is wrapped up in the pain and trauma of the ice storm. Along with guilt and shame that I’m still affected by it. This post is me trying not to judge myself for my suffering.

I said at the beginning that I’d mention some things that help when a weather event or outage is possible or is in progress. I know some of these are contradictory, and I’m not saying these are what would help everyone, but this is what does or doesn’t help me feel calmer, so maybe some of it will be relevant to others, too:

• Talking about it — unless I bring it up — doesn’t help. It triggers my anxiety. I don’t want to hear that there may be outages or trees down or this or that worrisome thing. I get weather alerts automatically on my computer and from the electric company by phone. That’s plenty.

• If I tell you I’m anxious, saying, “There’s nothing to be anxious about,” doesn’t diminish my anxiety. I just interpret that as you telling me to shut up, even though I know people say this in an attempt to be supportive. Saying something like, “I can understand how this could be very triggering for you. Is there anything I can do to help you feel less anxious?” would feel better.

• If I say I’m anxious, even if I don’t “seem” anxious, believe me that I am totally freaked out. When I’m in a state of extreme anxiety, I tend to speak very slowly and quietly because I’m having so much trouble thinking that it’s an effort to string a thought together, let alone express it. However, I have discovered that most people interpret this as me being spaced out or mellow or something. Often, the more anxious I am, the quieter and more still I become. (A lesson from the animal world: It’s not just fight or flight, it’s fight, flight, or freeze; and many animals go with freeze.)

• Likewise, reasoning with me would seem like it should help — pointing out that it’s not winter, that I’m not alone this time, etc., — but it doesn’t help. This comes back to the fact that there’s something in me that just connects being in the dark, without power, to potential death, and certainly terror and helplessness, regardless of how irrational that is. When I hear someone say, “But it’s not winter,” or “But it’s daytime,” I just feel ashamed that I’m having these irrational feelings. You could try saying, “Is there anything that feels safer now than before that you could focus on?” That might help. I’m not sure.

• Part of the problem with reminding me what’s different is that I also don’t have a lot of what I had to survive the ice storm. I don’t have Gadget, and my grief feels overwhelming if those two losses/traumas combine. I don’t have my best friends I loved so much who tried to provide assistance from afar, etc. That’s why I think it’s good to focus on what I have now, like Barnum. Barnum helps a lot. For one thing, he’s entertaining. He helps me keep my focus out, which is important. He now has also gotten good at resting his head on my leg when I am anxious. He started doing it tonight, and I hadn’t even cued him. But then I started clicking and treating him for it so he would continue. Here are some adorable pictures of him resting his head on my legs while I wrote this blog:

Mm, comfy. (Can I have some cheese now?)

He tried out some different positions. This was the best one:

This MUST be cheese-worthy. (No, I'm not eating the keyboard. I gave that up in puppyhood.)

• If I am able to do training with him, that’s the most therapeutic thing there is, because it requires total mental, physical, and emotional focus and commitment. There is no room for me to obsess about my mortality. Thus, talking about Barnum is usually good. You can ask if I have any plans for things to do with him in the next couple of days (and not even mention the storm).

• Ask me what is helpful! This is often very helpful. Ask me if I’d like you to distract me. Usually the best thing is for me to focus on other things, to just chat about stuff and keep my mind off The Scary Thing. When I was calmest today was when I was working on my other blog (I’m putting together pages with links to books I’m in) or doing stuff with Barnum or listening to Harry Potter. If you’re someone I talk on the phone with, call me and see if I’m in any shape to chat about something totally frivolous. If you’re a reader here or an email friend, do something similar. Please don’t be offended if I don’t respond. I am using a lot of energy dealing with being anxious, so I’m not responding to emails much right now. I might need to just listen to Harry Potter. The Harry Potter CDs are my wubbies. I know the books by heart. I literally can’t count how many times I’ve listened to them. When in doubt, listen to Harry Potter — that’s my motto. It’s so unrelated to anything in my world, it’s wonderful.

• Because I tend to deal with my anxiety by trying to pretend that the weather event is not going to happen, I am often caught by surprise when it does, or when we do lose power. Then I freak out that I haven’t set aside water or moved the battery pack into my room or put the number for the electric company in any easy-to-find location. So, asking me, in a low-key way, if I have done these things can be useful. (We have.)

• Let me know you care, ideally in a positive, low-key way. I got a voicemail today from a dear friend who is also homebound on the East Coast, letting me know she is thinking of me, and passing on a message from a West Coast friend to both of us of “a wish for calm, inside and out.” I thought that was lovely. It helped me focus on the idea of calm weather and a calm internal state, that both were possible.

• I asked Betsy, if the power goes out, and I’m anxious, to remind me that I have a list of people I can call — with their phone numbers — and things I can do if I do lose power. My therapist helped me come up with it, along with a visualization. It helps me to know I have this list.

So, there it is. Writing this post gave me something to focus on, too.It too me about fifteen hours, on and off.

May you all have calm days and nights now and in the next few days, internally and externally.

– Sharon, the muse of Gadget (Mr. Cool), and Barnum (so calm that he’s asleep now)