Tag Archives: sleep

So many possible (good) changes

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There really are so many possible good changes coming up for me: the possibility of finishing my B.A. via independent study (waiting on my acceptance letter), the possibility of getting out of this rut I’ve been in since my awful Risperdall/Fanapt med change by upping the Fanapt. I’m on a really low dose of Fanapt, so it’s a good possibility for change. I was so nervous from the shock of the med change itself (the six weeks after) the last time I saw my psychiatrist that I wasn’t ready emotionally to try anything else.

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I may not be getting my Utah geography correctly, but I think this photo is of the light coming down in a slot canyon (?) in Utah. In any case, I know the places even if I don’t know the terminology, and the simple terminology for it is beauty: with God’s creations and his light shining down. Some days I may be (theoretically) down in one of these slot canyons and even though it’s beautiful, I feel so stuck and alone, until I find a way out; often with help. I feel like I’m getting there. I feel like, even though it’s been hard the past couple months feeling like I have no “good days” physically and I’m only feeling “okay” on some evenings, at least I know there’s more to try and I do feel deep down in my bones and my gut or however you might say it that things are looking up.

I do need to get through some difficult things with my family first, but by a month from now that should all be taken care of. Now I just need to say a prayer that I find a way down to CA and have the money to see my kids during the time when it’s convenient for their summer schedule.

I am feeling  positive. This will work out. And I still need a lot of patience!

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PTSD and a day in May

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tulips-1352561_640.jpgMy nightmares haven’t been as bad the past couple weeks: in fact I think I went a whole week without any. I still have intense dreams without the nightmares, but I can live with those.

I am feeling rather weak and I’m not sure why. My sleep schedule has been way off and I suspect that as the culprit. When I can’t sleep at night, I turn on General Conference (LDS Church) and listen to it. I haven’t had much exercise and perhaps that’s made me weaker.

I’m applying to finish my BYU Bachelor of General Studies degree (independent study) and I think that’s helped give me more empowered dreams. I’m really excited about it. In the past three years I’ve had trouble and writing and reading more serious subject books due to problems with focus and being “foggy-brained” but I think maybe I can do it now if I pace myself. When I was on campus, I had to go full time, and that was a no-go. I think writing two blogs has helped ameliorate my issues with perfectionism, so hopefully now I can just put my thoughts down on paper and get papers written. I’ve struggled for years with the fear that I’ll never be able to finish school and support myself.

I’ve also been a bit bored despite having projects to do, and my therapist sees that as a sign that I’m getting better. Now I just need more normal sleep and more exercise. It’s beautiful out there today: can’t wait to get out.

Spring

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tulip-750460_640.jpg Despite having allergies, spring has always been my favorite season. It’s especially so here in Utah. I’ve been here almost five years, but all the new (to me) plants and trees and flowers haven’t lost their novelty. I love their connection as symbols of Easter and the resurrection as well.

Things are going along about as usual. Spring and spending time with others is making it easier to bear. I had really good dreams this morning as a nice change. In my dream I had some kind of job as someone’s assistant. We shared a big office and my desk and surrounding area had a lot of charm. I knew that somewhere nearby my daughter was at school and my son was away at college and all was well. The dream repeated a bit later and I was a graphic designer, which is way outside my range of talent, but it was a fun addition to the dream.

I’m going to cling to memories of the good dream and see them as a sign that I’m feeling hope in my future when it comes to my anxiety. In the meantime, I have more to work on with eating a bigger variety of foods, and two doctor’s appointments coming up where I get to talk about some unpleasant things I’ve been dealing with. Since I’m on Medicaid now, my insurance situation has changed, which I thought meant that I could get a doctor closer to where I am now. However, all the doctors here in Orem had wait lists several months long for Medicaid patients, so I’ll need to go to a different city. I found one near the local bus line, though, so I still think it will be easier.

There are a lot of things to be grateful for, and today I’m grateful that I am feeling the gratitude.

Bad day

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I have no idea where it came from (I often don’t) but I had nightmares and intense dreams all morning and didn’t wake up until almost 4pm. I’m grateful to be awake. These are the days when I don’t want to close my eyes because I think I might fall asleep again and I don’t want to.

The dreams weren’t the worst I could have (in fact I had some me as a superhero dreams) but I was struggling to wake up and “trying to get home” and other common themes for me. Time to write about them in my journal. It seems to help.

And yes, I went to bed at a normal time last night. C’est la vie.

Still Better

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easter-1237585_640.jpgIt’s been two months since the start of my med changes, and I’m finally feeling back to “normal.”  In the last few days, the last of the unpleasant side-effects of the changes has tapered down. I’m still feeling more tired than before, but I’ve been making it out every other day or more, which is a huge improvement. Tonight I was able to walk three miles with a friend. I’ve been doing my dumbbell exercises throughout, but I still think my arms feel wimpier than they did two months ago, but I believe that will get back to normal. I’m most excited about the pretty effortless three mile walk. I’ll be trying my dance workout from YouTube again. 🙂

More Springtime Recovery

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flowers-747206_640.jpg I’m so happy that it’s spring. I really wanted to go for a walk today because it was so beautiful outside, but every time I stood up I felt discombobulated. I also have a head tremor today. 😛 I’m working to get my days and nights back to normal (more on that in a bit), and I’m sure that’s a large part of why I’m so “off.”

So, my latest attempt at day/night normalization:
(It’s currently Thursday evening.)
-On Wednesday morning, after being up all night, I decided to once again stay up all day. We had a Relief Society (church women’s organization) activity Wednesday night and I figured that if I could stay awake, I’d have that as a reward. Plus, I miss getting out something terrible. Add Spring Fever and there you go…
-I don’t remember what I did all day yesterday (Wednesday) but it involved a lot of Hulu, Netflix, and putting away laundry.
-By about 1pm I just.wanted.sleep, so I turned on General Conference (it relaxes me) and lay down. Happily and for my own good, I didn’t fall asleep. My body was a jittery mess. I’ve never had coffee, but I imagine that maybe this is what your body feels like when you haven’t had your caffeine?
-By 3:30ish I was feeling like I could go to sleep, but I figured if I could just hold out until 6, it would be close to a normal bedtime and maybe I’d even feel up to the activity.
-By 6 I wanted to go to the activity, but when I’d stand up it wasn’t good. I let it go until 7pm, then I crawled in bed and fell immediately asleep.
-At around 7am I woke up briefly, but my body was in full anxiety panic attack mode and I couldn’t move, so I went back to sleep.
-I woke up again around 11am. I spent the next two hours, until 1pm, in a nightmare and unable to lift my head but wanting badly to be awake. It was one of those “trying to find my bedroom” nightmares again where things kept stopping me from getting home. At 1pm I opened my eyes and decided there had to be some way to get up. Sitting up took all my willpower and I sat there for a long time, shaking my head and rubbing my eyes and reminding myself that the nightmare was over.

So, hopefully I can fall asleep tonight. I managed to go for a walk! About 1/4 mile in I was thinking that I should just go home, but a McDouble at McDonald’s later I decided to try a bit farther. It was pretty iffy, but I got out! And spring is here!! There were bulbs poking their leaves out everywhere. Soon there will be tulips galore. There was a bush full of singing little birds, and at one neighbor’s the daffodils were already blooming! I love spring here so much. And as usual, the mountains were there. No matter what day it is, they always seem to look a little different, and they’re always majestic.

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Recovering!

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daffodil-56420_640 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.zombie-156138_640

A few days in my fourth week of medication change problems

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heart addictedSuch 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.

 

Meh

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time-371226_640And 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.

On a scale of 1 to 10…

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number-10I’ve discovered that there’s sometimes still a large disconnect between what some of the people who “know” me think I’m going through, and what I’m actually going through.

Have you ever been asked by a doctor how severe the pain is that you’re going through, on a scale of 1 to 10, or 1 to 100? I finally got the courage to ask one time, “So, what is 10? Is 10 going through labor? Because it’s bad, but it’s not that bad.”  I’m still not sure how to do that with friends, or when it’s even worth it. I have just a few friends that I will try to further explain it, because they’re the friends who have felt comfortable in the past asking for more details, and who seems to mostly “get it” even if they haven’t been through it. I learned the hard way, at a more needy time of my life, that even if I think someone who absolutely doesn’t get it and doesn’t seem to want to, even if they ask me questions, I probably won’t be able to ever talk or explain enough. They’re probably not emotionally ready, and I’ll just end up getting hurt, and maybe they will, too.

I still haven’t figured out the pain scale. Doctors seem to be able to figure out what they need to without me trying to gain clarity for myself.

As for my anxiety, thus far the “10” (and worst) for me was the time I had to go to the E.R. My doctor and therapist know what that means. I don’t think that many people have seen a panic attack that’s that bad, though.cure-297557_640

So, a couple of people asked me what it was that keeps me from church sometimes. (I feel a little vulnerable on this one, for some reason, despite the irony of writing it on a blog where I’ve already revealed quite a bit.) Usually, it’s that my anxiety is so bad that my nightmares have kept me from sleeping very well and I can’t wake up. If I can wake up, it’s more tricky. I’m more likely to go to church, but nervous about how I’ll be able to handle it. Last week I managed, but I had to miss a lot because I had to sit outside of Sacrament Meeting and Relief Society because the noise and crowds were too much. This week, I managed to sit outside Sacrament Meeting okay, but by Relief Society, I just needed to lie down. Some people may think, “oh, just do some breathing techniques” or one of the many other things I’ve learned. Those things help me on a regular Sunday, or in the long run, but when my anxiety is hitting a 7 or 8 (nothing most people ever have to deal with, I don’t think) that’s not going to do it. As I said to a friend, “If you had the flu, and weren’t retaining anything you heard, and all you could think about was lying down so you could calm down and get some sleep, would you stay?” Also, I DON’T LIKE missing things. Yes, I do get embarrassed if I start to twitch or I feel stuck somewhere and my mind is about to turn off because I keep trying and trying to do calming techniques and it’s not working, because I’m “running faster than I have strength.” No one was ever promised that none of us would have to deal with a difficult mental illness in this life. I don’t want to make people have to see it. It makes people uncomfortable. On top of that (and probably more important) is that it will keep getting worse until I find a way to calm down, and sometimes the only way to do that is to be able to lie down in a quiet room, by myself, where I know no one will bother me. dice-10

I had to ask a friend to take me home early on Sunday. It was quite a bit out of her way to drive several miles to drop me off, go back to church, then come home again this way. It was extremely kind of her. When I got home, I said, “I don’t want to be here, but I need the rest. But this means I’m missing church again.”

What did I learn from this that I need to work on? I took a long nap on Saturday afternoon, that ended up being full of nightmares and thus not restful at all. I ended up afraid to go to bed on Saturday. I need to try to go to bed earlier on Saturday nights, and learn not to be afraid. Plenty of techniques I can use with that.

I understand those who mean well who think one or two simple things, applied daily, will fix all this. It’s just not that simple. It’s more like a very long list of things that will possibly work, as I go through it and pray about it and talk with my doctor and my therapist etc., will fix this. Please don’t insult the intelligence or the integrity (even if we’re not perfect….I know I’m not) of those of us dealing with serious mental health issues. And obviously I don’t have it as bad as a lot of people: no hallucinating, no long stays (or even short ones) in the mental hospital. But getting over my PTSD is like having a full-time job: but one with odd hours and no sure answers. The answers are looking a lot better than they were 5,10,20 years ago, but one of the biggest battles is yet around the still elusive corner: (will I get approved for disability?)