Recovering!

It’s been 5 or 6 weeks now since the medication change (Risperdal to Fanapt) and I’m finally feeling human. I think that after the withdrawals left, I must have been struggling with sleepiness associated with Fanapt. I’m still struggling to get my sleep schedule back to normal, but at least I’m only sleeping 8 to 10 hours a night instead of up to 18. I’m also still waking up partway through my sleep with awful shakiness that doesn’t always go away once I’m fully “rested.”

I feel like my mind may be more clear than when I was on Risperdal. I’m also not certain, but suspicious that my eyesight may have been affected by it the same way it was when on Geodon and one other med.

My nightmares are indeed “clearer,” and when I write them in my journal (like I’ve been doing for years) I feel like they make more sense to me than they did before. Cautious optimism here. 🙂

My decision today is, once again, whether after not sleeping last night if I want to try to stay awake all day or to give up and get some sleep. The staying awake method hasn’t been working well, with the big exception of when I need to go somewhere I can get there. I don’t have anywhere to go today and I can’t think of anything that will keep me awake. If I try to exercise I will probably trip over my own feet and hit my head on something. Challenge to be continued. I’ve been here many times before and I’ve always gotten through it.

Medication Changes: that Circus

Possibly boring stuff: all on medication

I’ve been through a lot of medication changes and they’re never fun, but switching from Risperdal to Fenapt this past week has been the most challenging change since Paxil to Effexor more than ten years ago. I’m halfway through the change. My doctor had me swap one pill a day for a week: then tomorrow it will start swapping the other pill, and thus the complete switch to Fenapt and no more Risperdal.  So why the chance? Risperdal was working great at eliminating my nightmares (along with the Prazosin that I also take) and making my days feel more like “normal” days where I can actually get up most every morning. But Risperdal made me gain 40 pounds. And yes, when a psychiatric med “makes” you gain weight, your brain chemistry actually changes and you feel like you’re hungry 24/7. I fought it pretty hard, but I was waking up hungry in the middle of the night. So, Fenapt is the new choice. I need to study up more on Fenapt. I’ve only given it a cursory, “looks safe, won’t make me gain weight.”  (Just 4 days into going off Risperdal I could tell a marked difference in how much less an appetite I had.)

In any case, this being only the second worst medication change I’ve had (maybe third….it’s been too long) is because, once upon a time, I had to go off Paxil while I had two small children to take care of. I will never, ever take Paxil again because going off it was a nightmare. I couldn’t keep myself awake and I was dizzy 24/7 and only felt safe when my head was on my pillow. Their dad ended up having to care for them for more than his share, which I never liked. I like my share with my kids. But they’re better off safe: I knew that. Wasn’t easy on him, but that’s water under the bridge.

This time around it’s mostly the immense fatigue and disorientation/dizziness. The first two days after the change my anxiety skyrocketed and I was sleeping in my bed clutching my magic Koosh ball which lovingly lets me squeeze the heck out of it. I had to miss singing in church. People were kind and my friend M brought me McDonald’s, and my new roommate A let me go with her to Walmart for groceries. I missed my therapist appointment on Friday but got to make up for it on Monday. I felt so proud of myself, getting there in the 20-ish degree weather, and even more so for getting home in the 22 degree weather plus wind. The wind was killer with those temperatures: the ride and walk down was pleasant, the ride and walk back with the wind was the coldest I’ve been since moving to Utah I think. The wind will get you every time. But: I am a studmuffin. I made it through.

So I have nothing exciting to talk about. It’s med changes and I’ll keep praying that the transition goes smoothly and that it doesn’t get to me so much emotionally that I end up in a heap on my bed for the rest of my life. Nope, odds are against that…I think.

Recovering from Good Stuff

I had the opportunity to help throw a bridal shower for a friend this week. I’m paying for it, but it was worth it. There’s some more good news in that regards, but I’ll get to that later.

I had plenty of time to plan. I don’t do complicated. I also had a partner in planning who did all of the things well that I’m not very good at. If I were to be a party planner the rest of my life, I would want her for my partner. It was that much fun. She even talked me into helping her icing the cupcakes with one of those fancy icing bags. I’m better at invites and games and that sort of thing.

I have to carefully allot my time during the week, but the past three weeks have been a lot better. My doctor upped my Risperidone and it’s helped a ton! I’ve been sleepy all the time, which I think is passing as I get used to it, but I’ve been awake a lot more. I’ve had less nightmares and everything else. It’s made life so much more bearable and I’ve also been more able to count my blessings without getting as depressed. My therapist said she could tell a difference, and my friends have been remarking on it, too.

Thus, I felt I had the courage (and ability) to help throw the shower. It was also at our place. I didn’t clean much beforehand as it’s already clean here, but it could have been better, yet I survived. My “have to clean everything perfectly” anxieties were thus lessened in that area. (Our front rooms are usually clean, my room is usually messy…a lot like growing up.)

So, while we were getting ready yesterday, my mind still halted occasionally but it wasn’t bad. I could tell I was headed towards bad anxiety just a couple of times, and after either eating or taking a break I was okay again. It was such a relief! One of the things that’s difficult to explain to people about anxiety disorders is that the “usual” methods of calming oneself don’t always work. We feel “stuck” in the anxiety with very little that helps lower it.

But….not this time. Some loud music someone played briefly on their phone almost got me while everyone was talking. I was leading the game so leaving for a break would have been awkward.

I fell right asleep last night. I did, unfortunately, have a lot of nightmares last night, but they could have been worse. I still felt like I had some control of the dreams. I ended up shaky with my “insides shaking” but I had no limbs flapping. For as much as I did yesterday, that’s quite a feat. Also, I couldn’t get out of bed today until after 1pm. Considering that at times after something so large I could have been wiped out for a few days, that’s also something. I’m fully hoping to get to go for a walk later. I could really use it.

Neither tremor nor tremolo!

Today has been a good day. Last week I started getting more tired again and having racing thoughts and needing yet more time at home alone and more sleep etc. (it’s all relative….some versus more). But it was frustrating, as things will be. So at my doctor’s appointment on Tuesday, he upped my dose of Respirdall, and it seemed to help almost immediately. I still can’t go just anywhere I want to whenever I want to (it’s a l.o.n.g way from that), but the blessing was that it’s better again.

So I rested yesterday (Saturday) and last night, in the hopes of making church today. And I did! I woke up around 8:30am. And I was fine. No nightmares, hardly any racing thoughts. And it was a really good day.

Best part?

For years I have avoided, whenever possible, sharing a hymn book with someone at church and holding it with them (me with one hand, them with one of their hands, for those not familiar) because my hands shake and I’m pretty sure it’s more inconvenient for them to try to read it with my hand shaking, thus shaking the whole book. If my hand is shaking enough, I’ll just hand it to them. Anywhere in between and I feel awkward.

Today in Relief Society (women’s meeting) the woman next to me offered (as usual) to hold one side of the book, and….my hand wasn’t shaking! First time in years! Maybe this Respirdall is helping more than I realized. My hands were shaking this morning while I was doing dishes, but that they can “settle down” is giving me hope.

Counting Blessings after Nightmares

I got over-tired again last night, but it was in a good way at least. I was playing Phase 10 with friends at church and watching others play volleyball. We were being pretty silly and it was a lot of fun. I also got to talk on the phone with my son who has just started his freshman year at college and it’s so much fun to live vicariously through him a little and to hear what he’s up to and that he’s enjoying himself and working hard. I got to hear from my daughter a couple nights ago. I’ll be bugging both of them again soon.

I had more nightmares last night, but they weren’t as bad as the night before. I took a long nap this afternoon and it was nightmare-free and very restful. I’m still a bit shaky, but hey, I can type.

List of blessings:

1. My kids are doing well
2. I have friends who know how to be silly and have fun
3. I’m learning how to do the genealogy portion of family history a bit better and it’s fun
4. Got to speak with my aunt (mom’s sister) on the phone last night about family stories (my mom passed away when I was 8)
5. My disability hearing is coming up soon. This part is almost over.
6. Our three week heat wave seems to be over. 100 degree weather is hard when you walk several miles a week to get places (doctor etc.)
7. My roommates are great
8. My kids are wonderful and doing well
9. I found the second book online by Peter A. Levine that I want to read. I’m learning a lot from the one I already have. This is the second book, now on my wish list: 

The positive amidst the negative

I really need to post the positive here more often. I use this blog perhaps too frequently just for venting, and my life isn’t all just PTSD and anxiety.

So, I made it to all of church yesterday. Then I realized last night that even though it had been probably at least 2 weeks since I’d had any bad nightmares, I hadn’t shared that either. Then last night I had bad nightmares, the kind that pin me to my bed and make it difficult to move or wake up. *But*, it had been quite a while. I don’t think I’ve gone that long without them. Upon reflection, I’ve been focusing on not getting over-tired, and I seem to get more nightmares when I’m over-tired.

So, I needed today for sleeping. I’m still shaky and a bit out of it. Doing anything complicated isn’t an option. But…there’s our single’s group home evening tonight. It’s a small group gathering tonight, and while most will play ping pong (not on my list of things that I’m good at or enjoy), it means I can enjoy just sitting and watching and talking to friends.

Yesterday I was able to get a hold of both my kids: one on the phone, the other texting. That always makes my day.

I’ve been reading this book a little each night and feel like I’m learning a lot from it. It’s answering some questions I’ve had regarding different healing modalities used for trauma victims. I’m really looking forward to reading the rest of it. He mentions in it that he will be publishing an entire book devoted to childhood trauma victims, and I think that book may be out by now.

I made it through church!

I made it through all three hours of church! For those of you who aren’t familiar with LDS culture, we have three meetings every Sunday which add up to three hours in total. Mornings are often hard for me, and I haven’t made all three hours in about a month. Church is important to me both for the spiritual aspects and because (admittedly) it cuts down on the feelings of isolation I get from so much time at home. Sometimes I get there and realize I’m just really tired and that the noise and “crowd” of people is too much: at those times I’m on sensory overload.

This past month it’s been more that I’ve had tremors, though. Whatever the case, I’m glad that I made it.

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.

Missing things.

The past two weeks have been very eventful. I think they’ve been way more positive than negative, even if my PTSD symptoms seem to have a mind of their own. I’ve been able to make it to the most important events of the two weeks with one glaring exception: my son’s high school graduation was a Tuesday evening followed by my daughter’s middle school graduation on a Wednesday morning. So, guess what I missed? Yup, the middle school graduation. I don’t think it was good emotionally for either my daughter or for me. I think my Facebook post will sum it up the best:

Slightly personal. One of the joys of having PTSD: (and no, I won’t tell you where I got it from): I had a good time at (son’s) graduation, but it was a very large, happy (good thing) noisy crowd. I was happy but a bit of a shaking mess by the end. (Daughter’s) Middle School graduation was this morning. I could wake up, but I was semi-paralyzed and could hardly move or speak. I managed a text that I wasn’t doing well, then I missed her graduation. These are the times when having PTSD really stinks the most. I slept for several more hours, having nightmares about trying to get to (daughter’s) promotion. There is no way I can take it back. Then a certain family member was giving me a hard time about having gone to (son’s) graduation instead of Libby’s. Because, you know, as a Mom I always want to make choices like that, and I’m omniscient about consequences. It’s now 3:30 and the tremors still haven’t completely gone away, and I’m still struggling to speak. And (daughter) didn’t have her mom at her graduation.

Mental illnesses aren’t different from physical illnesses in this way. Oh, because wait…mental illnesses ARE physical ilnesses! There’s this weird misconception, which is probably understandable, that because they’re “mental” that people who have them haven’t done the intense mental and physical struggling to try to be everywhere they want and need to be. Just like everyone else, I have to miss things that I want to get to go to more than anything else. I miss things that I didn’t want to go to, and I feel bad about that too! Basically, I have to constantly work on the shame and guilt and good guilt and bad guilt of all the places I both want to go to and don’t want to go to. And some of the things I don’t want to go to are easier to go to (some meetings, for instance) than things I want to go to (I can’t currently do any movies in theaters….how’s that for fun…you want to go there?)  But missing my daughter’s graduation takes the cake. For the rest of my life, this will be one of those things that I remember with much more frustration than having to miss a bunch of movies in theaters for a couple of years, or however long it ends up lasting. I can’t make it up. So, my daughter was really understanding. She was upset and disappointed. It was one of those things that incites a combination of feelings. I can’t get into her head and tell you everything that went on, but I can tell you what I know from what she told me and other family members. I can tell you what it was like when I was lying in my bed with most of my body stuck there and not wanting to move, and my head wanting to believe that it was 1am instead of 8 or 9 am, and wishing that someone could stick me on a stretcher or at least offer me a Skype session of it. I’m trying to work on my anger with people who don’t understand. With the people I don’t know very well, it’s not an issue. With a couple of family members, it bothers me and I do take it personally at times. Then I talk it out with a friend or my therapist and the forgiveness comes back. In the meantime, I’m grateful I wasn’t able to slug the person who suggested that I somehow could have made it. I could have, probably, had I missed my son’s graduation. He was in a graduating class of over 1,000 students. How do you decide not to try to make it to that? I had done okay for the few days prior, so I was  praying that I’d make both. I had made it to his Baccalaureate and my daughter’s awards assembly. It’s so easy online to see the enormous evidence of how much we all judge others based on 20/20 vision and hindsight. I’m the one who is going to spend the rest of my life knowing that I missed my daughter’s 8th grade promotion. Everyone can….I want to use words that I shouldn’t. I love my family and I love my daughter and I’m going to make it past this somehow. The rest of you who are mostly healthy and get to go to both the things you want to and most of the things you don’t…..think about your health. Don’t make it to everything you want to? Welcome to the lives of everyone else on the planet. And I was touched by how many people understood how I was feeling and reached out to both me and my daughter. And this post ended up long, about just one thing, so I guess I’ll move on to another post for the rest. For what it’s worth. I have way more blessings than I have disappointments. At the very least, I believe this phrase that I heard once, “The sorrows may outnumber the joys, but the joys will outweigh the sorrows.”  My blessings here on my trip to CA have far outweighed the sorrows, despite the frustration of missing my daughter’s promotion. And I kept myself from swearing (slightly swearing) over the subject. 😛

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.