A tremulous day

The full body tremors that I get from my PTSD are not one of the worst things I have to deal with, but they are inconvenient. I knew last night when I went to bed that I was over-tired, and sure enough, after about 8 hours of sleep I got out of bed shaking inside and out like a leaf, and my head bobbing slowly, and there didn’t seem to be much I could do about it other than get back in bed and try to relax and sleep some more. I woke up at intervals to listen to old Conference talks and BYU devotionals. Yesterday morning it was about 15 chapters of 3 Nephi. I don’t know how much I retain, but I do seem to retain themes, and I can always listen to them again. For over ten years these are the only kinds of things that have helped bring down my anxiety levels in the middle of the night.

On the blessing/could be worse side, when I have tremors durign the day and need to sleep, the nightmares seems to get better instead of worse. It’s not like when I’m dealing with feeling paralyzed and attached to my bed. Yes, it could be worse.

I’ve had two weeks of the on and off body shaking. Today was a bummer because it was a Sunday and it didn’t end until around 6pm. I was pretty useless

This article in the Ensign/Liahona on Patience seems to have been written just for me recently.
Patience: More Than Waiting

Another thing on the patience continuum: when I go through weeks like this, I need more patience with what seem to be like endless peanut putter sandwiches. My mind is on the lower end of the abilities continuum and I freeze when in the kitchen.

Establishing Healing Habits

I was so proud to report how I’m getting better at finding the best coping/healing techniques each day as I go to write in my journal, or at the times of the day when I realize what is bothering me. Today, however, got wrapped up in digestive issues (leaky gut). I’ve had two nights and days of that now, but it’s been at least two weeks since the last time, so I call that a success. For a while I was dealing with it nearly every day in some way or another, for a period of months. I’m blaming it on the blue cheese dressing (full of soybean oil) and thus not FODMAP free. On the good side, dark chocolate, small amounts of onion and garlic don’t seem to be issues for me. Those are the findings for now. I have gained more patience for not knowing all the answers all the time.

I will write more about different DBT and other cognitive “healing methods” tomorrow perhaps. They are working. It’s taken some time for some of the newer techniques be more second nature when I’m writing. The older techniques from the Feeling Good Handbook became second nature years ago, before I got married. Not to say that I’m perfect at that, either (and I could use a review) but I’m pretty sure that if I tried to use that method alone, on its own, it would drive me nutty. Oh wait, it has. 😉 I think there can come a time in almost any type of therapy where one has “learned that, lessons no longer helping, time to move on…..”

As for the two days of IBS….I’ve lost my appetite and mostly feel like I need a lot of water. It just feels like my body needs to cleanse itself of whatever it was (soybean oil in dressing??). I get kind of funny, meaning actually humorous, when I’m not getting enough to eat and I’m stuck at home and then I finally get out to see people. My filter seems gone and it feels like I’m mumbling slightly incoherently about my kids and my latest insomnia obsession (Hawaii 5-0, never version.) I think I’m starting to think that I’ve actually been to Hawaii….

I have a therapy appointment tomorrow and while I think I’ll be able to get up for it, I’m a little worried that I’ll be able to get down there without constantly running into bathrooms along the bus route.  Maybe I should leave early. 🙂 And no more salad dressing containing high amounts of soybean oil…

Rock Band and PTSD. Yup.

I don’t know that I ever would have guessed this, but someone at church started providing their Rock Band game during our weekly volleyball/game night, and I can’t think of a better way to say this: it kicks my anxiety’s bu*t! Every week after playing, my anxiety is practically gone, enough so that after just the first week I was thinking, “If I get disability and my disability back pay, I’m going to buy Rock Band!” Can you imagine my recovery? “Take one hour of Rock Band drums, vocals, and a little guitar a day, and your anxiety level will be low enough to get rid of at least half of your PTSD symptoms…..”  I don’t know if it would be as dramatic as that, but it’s been a long time since I’ve found anything that made that much of a difference, aside from time with friends and my therapist and doctor.

I’ve been singing my whole life. I have a minor in music, I’ve conducted several church choirs and got to conduct my college choir once out of a stroke of luck (and maybe some hard work, but there was luck involved), and growing up my favorite thing to do at home was to sit at the piano and play and sing. For some reason it’s not the stress reliever now that it once was. If I get to help out by accompanying our church choir when my hands aren’t shaking too much, I really enjoy it, even though I get excited when the better piano  player shows up.  I like to be able to be helpful, but I prefer the other person. When singing, I love to get to sight-read the hard parts. I’ve been able to sing, on and off, in more rigorous community choirs over the past years since college, but sometimes after a semester or two (what they call it, even though they’re not college choirs) if my anxiety levels get too high again, it gets to be an anxiety producer instead of an anxiety-buster. One strange thing about anxiety is that something that is helpful can turn into too much.

In the most recent large choir I was in, it could be the level of the noise (even if beautiful) or the mood of the director or a sudden burst of claustrophobia with so many people in the room (or a combination of all of it) that would get to me. I’d be doing breathing or inner meditation exercises, but my hands would start to shake harder and I’d start to get dizzy and suddenly I’m overwhelmed too much to stay in the room. The most recent choir directors didn’t like us to sit down, but sometimes I’d sit anyway, because….health issues. But I still felt like a failure. I felt comfortable discussing it with the choir president, but I wasn’t sure that the directors would think it was such a good idea for me to be there, and eventually it got to be too much, so that I knew it was too much, too. So choir, the thing that helped me keep my sanity through my first two years of college, had to go again. I couldn’t sing in choir my junior and senior years of college, either, which is a very long story in and of itself. And yes, it was anxiety/fatigue. One of the hardest times of my life, when it all became serious.

So in the same way that Rutter, Fauré, Mozart, and John Jacob Niles helped me in college: it looks like Queen, Bon Jovi, Green Day and Pat Benatar may help me out of my current funk. When I’m around others, I tend to have a sense of humor and joke around a lot: but when I’m at home, I seem to be too serious, and perhaps more my “over-thinking” self. It’s so exciting to find things that work, no matter how odd it may seem. Rock Band’s drums seem to be especially effective.  They just make me happy, even if I get a terrible score. 🙂  I can live with this!

Exercise, a healthy diet, and…..Rock Band.

On that note, the FODMAP diet has been helping, but true again to my over-thinking nature, I get to where I worry about it and then my stomach hurts from the worry, and not just from what I eat. My therapist and doctor both smiled and said that was really common. The cherry on top of that info? My new primary care doctor (new insurance) has IBS as well! I was hit with a feeling of peace when she told me and I knew that she understood.

So my stomach was bothering me a LOT yesterday. On the 1-10 pain scale, I was probably at a 6 or 7. I had some paperwork that I had to finish though, so I had to get on the bus and get back to the library to print some things out. So, what did I do? I forgot the notebook with the information in it that I needed to log into the website where I needed to print out the forms. I tried to make myself feel a little better by checking out a couple of library books. I then called several friends to see if they could help me out. The situation was getting a little ridiculous. I have had a ton of paperwork to do lately, but three weeks of bus rides just to get it done was frustrating me, because it feels like I haven’t gotten much of anything else done during the day.

On the way home, I knew it was getting time for dinner, and I just didn’t want to eat anything. It came to my mind my favorite treat that is allowed on my diet, but that I try not to eat too often, a Lindt Intense Mint bar. I thought, “I could eat one of those,” and suddenly my stomach pain was gone. Completely gone. Like that, I went from a 6 to a 0, just from the idea that I could eat one (so of course I did). I wish anxiety and physical symptoms always worked that way! (Believe me, I’ve tried….thousands of time). I was so happy that I was almost giddy.

high anxiety

Just not doing well. The past week I’ve had high levels of anxiety about 18 hrs out of each day. I’ve managed to relax a few hours out of every other day or so. I’ve had a lot of paperwork to do for myself, my son, and my daughter (all for good things) and keeping track of it and what needs to be printed out, mailed, notarized, and faxed has been a challenge. I don’t own a printer or a fax, so it’s meant a lot of bus rides. A friend helped me out yesterday.

I was up most of last night with digestive pain, but now it’s all gone. 🙂 I played “Rock Band” with friends at activity night at the church on Tuesday: unless you had good observation skills, you wouldn’t have known that I was anxious. I had to leave once for a while because it got too noisy for me, but by the end of the night my anxiety level seemed like the lowest it’s been in a long time. We had an activity the night before, but that one didn’t go so well for me, and I had to leave early.

The good side to all of this is that I’ve been able to spend time calming myself as much as I can and trying to figure out and write down where it’s coming from. The odd part is that I can go to bed feeling so much more relaxed after being with friends or going for a walk, then partway through the night the nightmares and/or tremors begin, with my head shaking or my arms twitching; or in one case last week, I had bad nightmares I couldn’t wake myself from until about 10am when I woke up partway with my arms pinned to me, and I couldn’t move or completely wake up. This lasted until about 3pm.

So life goes on. Will getting a set date for my disability hearing, and getting it finally over with, help solve this? Is it showing me just how much fear I have inside me that I need to heal? I have no idea. I missed my doctor’s appointment on Tuesday because I could not speak or get up and my body was shaking. It’s been rescheduled. I’m working on getting a ride to my therapy appointment so there’s less chance of missing it. I am very blessed that there are so many people (even strangers, people from church who don’t know me) who are willing to help. I get to where I just want to prove that I can make it myself for a while, then I go through a bad spell again and have to humble myself and learn to accept help again. Do any of us ever really learn this lesson?

It makes me laugh that I can still type so well when I’m still having trouble speaking. I absolutely had to make a phone call for my son’s college plans for next year, and the lady at the other end was extremely kind and patient.

 

 

Your Brain on PTSD. Your Stomach on PTSD?

I think that PTSD, or “Post Traumatic Stress Disorder” is most often associated with war veterans, but anyone who has been through any kind of trauma can end up with PTSD. I have more than a few symptoms that seem to cycle in and out. It can feel like I’ve conquered one or more, then the symptoms show up again.  There are three that I’ve had continuously since my early twenties, and some that I’ve had longer: anxiety and tremors, insomnia and other sleep issues, and fatigue. There are many more that I could list, but for now I’ll leave it at those that I’ve dealt with the longest.

But not all of them come from the brain, at least not directly. It’s common for those with PTSD to have problems with digestion. I only learned this a few months ago, after years of dealing with it. During my divorce about ten years ago, my stomach hurt nearly all the time for over a year. I was told that it was stress. It stopped, and only came back occasionally, during times of stress. Then this past year it got worse, and a few months ago it seemed like everything I ate made me sick. There are times when I can’t keep much in me. It’s called IBS. (You can look it up if you like, I’d rather not describe it.) Even though I had to go gluten-free about 18 years ago, and found out that I was lactose intolerant just prior to that, I could be strict with both of those issues and still get very sick for a couple of days. I could go into a lot of detail about the elimination diets I’ve been on (which were helpful) as well as the several times I’ve tried the Candida diet (for me, not so helpful), but I’ll leave it at that. And for those who think that no one really needs to go off gluten and that it’s just a “fad,” I wouldn’t try saying it to my face. It may be a fad for some, but when I stopped eating it 18 years ago, most of the doctors I went to for my fatigue had never heard of it, but it made an enormous difference for me. Several years later I was also able to see a doctor at UCLA who was on the National Board for Celiac Disease.

There are those who say that IBS is not affected by stress. The lives of thousands of people with IBS say otherwise. I’ve been managing it by going on the FODMAPS diet, which frankly is even more complicated than going gluten-free. I frequently have no idea what I’m going to eat, because if you talk to a few hundred others dealing with IBS on Facebook, they’re all “triggered” by different things. The different medical centers who list the “can and can’t eat” of the FODMAP diet online don’t agree on everything (try John Hopkins’ and Princeton’s lists for a comparison.) It means more elimination diet and having to accept that I’ll get sick sometimes. Because I’m hungry nearly all the time at the moment (but losing weight, yay….?) I still experience difficulties cooking at times because I’m going through medication changes and I often feel confused. I used to struggle being in the kitchen with someone else, but these days it’s helpful because having someone there helps keep me focused. Usually. If they try to give me to much unasked for advice, I just get confused and my mind goes blank.

By Mariana Ruiz Villarreal(LadyofHats) (Own work) [Public domain], via Wikimedia Commons