A few days in my fourth week of medication change problems

Such a long title, but I can’t think of anything shorter.

Let’s see if I can spell this right again: Risperdal. Or generic Risperidone. I was on it for six months, so you’d think I’d remember the spelling, but it still mutates in my head.

My doctor started tapering me off of it three weeks ago, almost four. Today was the first day since then that I was able to go out all by myself, and even that was a bit iffy. I won’t get into everything my body has been doing since then. I have been looking for synonyms for “disoriented” just for fun. Off-kilter, out of it, unsteady, rickety, wobbly, discombobulated. I’m liking “unsteady” (a friend gave me that one when we went for a walk) because it might be a more understandable to others. I have struggled to otherwise adequately explain this most common symptom of my anxiety to others. I think I came a little bit closer a couple weeks ago when I told a friend who was visiting, “If I went out to drive right now, I would get into a car crash within minutes.”  Just “dizzy” doesn’t explain it adequately. Just saying “my brain’s not working” invites understanding nods from others (and it’s my favorite explanation for most occasions) but it isn’t an adequate explanation of the difference between a healthier person’s mind after a rough day (which brings a type of fatigue I actually wish I could have more often) and my “unsteadiness.”

Yes, I’m still struggling with simple ways to explain this to those who want to understand better. And I’ve had a lot of unsteadiness this past month, but after a better day today I am still believing that it’ll get better soon.

So, the pharmacist said today that withdrawals from Risperdall (should I spell it differently just for fun? I do think it’s kind of a fun sounding name…for medication) usually last two weeks.  I’ve doubled that. So, I could (1) be on the long end of the exception or (2) the Fanapt is causing me problems. Or (3) some other explanation.

So I know this sounds crazy, but I’m grateful for the patience this past month has been teaching me. I used to complain when I’d get one or two days of this or a week, but with an entire four weeks, I’m having to dig deeper. I haven’t been able (until today) to go to the grocery store by myself or sometimes at all. I’ve had to get rides to the pharmacy and my doctors’ appointments. I’ve had to tell myself that it doesn’t matter when, at the doctor, they said I’d basically skipped out on my therapist appointment when in reality I was fighting nightmares and discombobulated unsteadiness at home. They weren’t trying to tell me personally that I was a failure. And….yeah so I corrected them quickly and they were understanding, but sometimes I wish they wouldn’t jump to conclusions so quickly when someone might be so sick that they can’t use the phone until after the appointment is over. Geesh, I’m sensitive. Still working on that.

I’m feeling less hard on myself than I was at the beginning of the month. I’ve had to ask for so much help and yet everyone who has helped me has insisted on checking up on me and following up to see how I’m doing and acted somewhat indignant when I’ve apologized too much. This world is not all a bad place full of scary people. Why I continually need this lesson, I’m not sure. It’s incremental, not an all at once thing.

I’ve also been patient with my need for a lot of Netflix. I’m not sure how many episodes of Gilmore Girls I’ve watched, but it’s helped calm the anxiety and I’m no longer telling myself that I’m such a horrible person for watching fun stuff when I’m not feeling well. Compassion for myself has bigger boundaries than it did.

I’m refusing to edit this. I’m too tired. It’ll have to do and that’s that.

 

Into the second week….med changes still

I’m a little grumpy today. As per doctor’s orders, I tapered off the second pill of Risperdall and I’m now only on Fenapt. My body is still adjusting. There is somewhere I would have liked to have gone today and there is something I will probably miss tomorrow. For some reason I’m not feeling the social isolation of about 10 days unable to do much other than two grocery store visit thanks to friends. I’ve been blessed with my visiting teachers calling and stopping by, and the Relief Society President just called me again. Last week a good friend came and visited for a while. So, there’s my answer. I know people care. One roommate did my dishes for me a few days ago and the other one took out the trash. That’s usually my job. Then there are the visits on the phone with my kids…

Repeating to myself: this will be over soon.

Gilmore Girls reruns and hours of listening to General Conference and BYU Devotionals (I also fall asleep to those) have been helpful too. I really don’t know how people handled this sort of thing 20 or 30 years ago. Lots of bad tv? 😉 A nice big window where you can just watch people and nature? I love the view out my window, but it couldn’t entertain me 24/7.

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.

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. 😛

Life, exciting life

It’s been a month since I posted, but I could have posted dozens of times since then with all that’s been going on. I’ve just been too exhausted, and it’s been a whirlwind of seeing my doctor and therapist several times and starting a new medication (Risperdal) and getting ready to go to CA to see my kids graduate. I’m still yet kind of out of it today, but not completely (especially since getting a nice big fattening dinner, thanks to a very kind friend) so I’m determined to post at least a little post. To sum up:

• I finally got a court date for my disability hearing! Yay! It’s in August.
• My anxiety levels were still going up, and I hit a level “10” several times and only through the help of friends did I manage to not go to the E.R., which would have been expensive. A level “10” for me means that I’m not functioning, barely able to talk or not able to, have difficulties moving around my room etc., very little or no ability to concentrate, racing thoughts, difficulties sitting up and moving my head an difficulties or an inability to walk due to extreme dizziness/disorientation, and it lasts for hours or on and off for a day or more.
• My doctor put me on the Risperdal and it was a lucky first time hit. It helped a lot within just a week. The only downside is that it seems to inhibit the receptors in my brain that tell me when I’m full. So far I just drink a lot of water to make up for it, but I did gain ten pounds of the 25 that I’d lost in the few months before. I think I have it under control, unlike my awful experience with Zyprexa, which helped my anxiety but made me really really hungry constantly. So hungry that it was pretty much really odd.
• I spent a week so excited at my upped energy levels and with the depression gone again that I overdid it and wore myself out several times.
• I was able to go to a conference this past weekend where one of my aunts was the keynote speaker and the president of the association for the year, and it was about the same subject that I majored in in college, and it was being held locally, so I got to go: along with my parents and another aunt. I definitely overdid it, even though I only managed to attend about half the conference. It was kind of a once in a lifetime thing, in a way, and I just didn’t want to miss out. So….
• I hit a level “10” again Sunday and Monday, managing to stay out of the hospital (an Ativan would have been nice, but the withdrawals and possible retrograde amnesia after wouldn’t have been).
• So, I was stupid and after about 12 good hours decided I’d try and help do some yard work with friends, for a friend. I was basically useless and couldn’t even put a shovel into the ground. My best friend, fresh off a cruise and who is still feeling like she’s on the ocean, got out a ton of weeds. I watered the ground underneath the weeds to soften it and got mud on myself (which is usually fun…maybe it still was) and after about 30 minutes it felt like I’d been hit by a truck. I did manage to get the weeds into a garbage bag. I guess my service will have to continue to be in other ways.
• But, in a few days I’ll be with my kids and friends and family again. I’ll have to keep it lower key, which seems to be the theme of the past year in a much greater degree than I’d ever anticipated. Learning my limits much? Yuck.
• The good part: I went a week with no nightmares, and I’ve had significantly less since starting the new med.

Meh

And another bad week. More nightmares almost every morning, into the afternoon every single day except maybe one. Have done some more journaling/DBT but need to do more. Missed my therapy appointment on Friday because of it. Here’s to things getting better. The nightmares could be worse: they’re mostly annoying and not the most scary ones. They definitely give me an indication as to what is bothering me. One of this morning’s is almost funny now, it just didn’t feel that way during it: all these people were dancing in my living room for some kind of Sunday morning club, and I couldn’t get around them to get to my room or the shower so that I could get ready for church. My roommate’s clock on the wall had an earlier time than it really was (only 10:30am) so I was feeling like I could get ready on time if people would just get out of the way. There was a lot more to it, as there always is. My closet had a lot of old clothes in it, and as I’d grab something that would fit, it would change into something else. That’s a recurring theme in my dreams, too. Babies kept appearing that needed their mothers, so I’d have to stop getting ready and look for their parents. And that was only a small part of the morning’s nightmares.

Volleyball-Induced Panic

This is just a harmless, cheerful-looking volleyball, ready for play. In theory. I think that’s even how I see it, but if I have to be in front of that net, with people all around me, those people (and especially that ball) fill me with dread.

There are plenty of things I am good at: school, music, socializing, French, getting to know new people. But when it comes to sports, the ones I love to participate in are swimming, running (if it weren’t for my knees), hiking, and capture the flag. Capture the flag can involve spying and subterfuge. The rest do not involve a ball. Why it is that I have good coordination on the piano and not with a ball, I’m not sure. Oh, and the big exception: soccer is fun. That involves my leg muscles and my feet. Completely different. And football? I have a hard time watching it, but I actually like to play it. Tackling people can be fun. Growing up, though, volleyball was the sport I feared the most at school.

When I worked at the Grand Canyon one summer between years at college, we used to play huge games of volleyball with all the employees. A couple of patient guys decided to help out those of us who really struggled. The motto that they had us repeat? “The ball….is your friend.” (It’s not the same without the dramatic pause in the middle.) I actually made a lot of progress that summer. I haven’t had much of a desire to play since, though, but I love to watch others play.

So, when it comes to PTSD and anxiety, doing things that you’re afraid of can be very healing overall. The tricky part? It needs to be scary enough, but not too scary. The whole “need not run faster than you have strength” still applies. (Mosiah 4:27)

I’ve been going to our single’s group’s “volleyball and board game” night one and off for a couple of years now. Yes, I’ve been invited to join in with the volleyball game many times. I finally decided last week that maybe I should give it a try. People were mostly just warming up. I didn’t stay in very long, but I was proud of myself. Then this past week, I decided to try again. I stayed in longer. But then they “really needed people,” so I stayed in even longer. For several games. Those of you who have never experienced this kind of anxiety may not understand this, but I could feel my anxiety level getting higher. I kept thinking (how many times have I been through this?) that if I breathed in and breathed out and tried not to panic, I’d be okay. But I’d stayed in too long. I’ts not like the kind of panic that you can hold off for a while, or make feel better: it takes over, completely. I was telling myself that I was fine, but I was intermittently forgetting where I was and what I was doing. It’s disorientation at its finest. It only lasted a split second each time, but it wasn’t good. The game ended, and I was sitting out in the hall trying to get my bearings back.

I had fun, but I need to honor the limits that I know work. When I first was dealing with these high levels of anxiety, it seemed like it took forever for me to figure out what those limits were and to learn how to stand by them to both myself and others. I guess while I’m trying to heal, it’s not much different.

The people I was playing volleyball with were all extremely supportive and kind, so it had nothing to do with that. And I have not given up: I’ll just honor my limits better.