Feeling Shameful – Admitting My Mistake

I forgot to take some of my medication last night. Of course it was the most important of all meds, my Clozapine. Right now, I’m feeling very shameful. The one thing I have going for myself is that I’m always compliant. I always take my medications, I always do whatever I’m told to do by my doctors (no matter how much I really don’t want to), and I always follow through on these things. I can’t believe that I forgot to take those pills.

I got home last night from the trip, unpacked, and was so tired I just fell asleep. I should have realized when I woke up two hours later, that I hadn’t taken my Clozapine. I was in and out for the rest of the night on the couch. Why didn’t I take that hint of not being able to sleep through the whole night? I didn’t realize until I was making the bed this morning. At that time, I saw my meds sitting on my nightstand. My first plan was to pretend it didn’t happen and not tell my psychiatrist. Then, I thought that I wouldn’t be able to live with myself if I wasn’t completely honest. So I sent an email to my psychiatrist and told him exactly what happened. I was extremely worried about what he would say, but his response told me not to worry and that I could still go and get my blood work done today.

I felt a little bit better knowing that my psychiatrist isn’t upset, but I’m still upset with myself. I expect myself to always be compliant. However, I was just told that by telling my psychiatrist exactly what happened, I was still being compliant. Complete honesty is what’s necessary for compliance, and that’s what I have done. I suppose I should give myself a break. Everybody makes mistakes; I need to allow myself to make mistakes as well. I need to stop shaming myself, and begin to be proud of myself for my honesty. As always, it’s easier said than done. I guess it’s just another thing to work on.

Home From A Trip

Returning from a trip is exhausting. There is so much to catch up on, but I still have to unpack. We got home late last night; my husband went to go lay in bed after helping to empty the car. I decided it would be a better idea to unpack right then, than waking up to all of that work. As I was unpacking, my husband realized that we forgot something, a very important something, in the hotel. He was very upset about it, and I understood. I think I will drive back there today to go get it, if they still have it. Every time someone gets upset, I automatically think it’s because of me; I always feel as if I’m responsible, even when I’m not. Just because we got home last night doesn’t mean I have to complete everything I missed while I was away in just one day. There’s nothing wrong with catching up on things over a two or three-day period.

We had a great trip; it was a lot of fun. We went for a hike and saw some really cool hieroglyphics, we went to a ghost town and did a lot of stuff there, we went and saw a couple of movies, and we went to a friend’s wedding. I think the trip was a success. It’s just getting back to your normal life that is the exhausting part. To make matters even more confusing, I’m leaving to go across the country to see my family in 5 days. I can’t wait to see everyone. I love going back home; however, it’s a lot to do in a short amount of time. It will all be worth it in the end. In order to make things easier for my next trip, I should probably start by making a list of everything I need to pack. I should also find my luggage and do the laundry. I should start doing anything that will make my final day or two before I leave a little less stressful.

I should probably take some time for myself today, easier said than done. I don’t really know what that means. Whenever someone asks me what I want to do, I always say, “Whatever you want” or “It doesn’t matter to me”. I do that because I don’t really know what I want to do. Today, I have 12 years sober. It’s hard to believe it’s been that long. I wish I could look back and remember various times in my life, but ECT has made that extremely difficult. I know that it was hell when I was first getting sober and various times throughout the years. Maybe it’s all for the best that I can only remember snippets of things. I still don’t know what I’m going to do for myself today, but it will be something, even if it’s as simple as taking the dog for a nice walk. I need to do something for myself that I enjoy, and not something that has to get done.

A Couple of Days Away

My husband’s friend is getting married in a couple of days and we’re going to the wedding, which is about an hour away. He decided that he wanted to go away for a couple of nights before so that we could enjoy ourselves. I know that it’s also easier on his back so he doesn’t have to do a lot of driving all in one day, but going away for two nights is a choice he made. I’m so happy that he wanted to do this; every couple needs time away together. I’ve really been looking forward to this, now all I have to do is pack.

I made a list yesterday of everything I need to bring with me. Hopefully I’m not forgetting anything. The list makes it easier for me to pack. My list includes clothing, toiletries, shoes, electronics, and more. I cross things off my list once they’re packed. I’m going to start the actual packing once I done writing. I still have a couple of errands to run before we go, some of the errands I could do when we are on our way out.

My brother-in-law stays at our house while we are gone. He takes care of the house and dog for us, which saves us a lot of money. It also makes me feel safer, knowing that our house is not empty.

My husband and I have what we call a ‘Douchebag Jar’. We are so sarcastic in everything that we do; when we make extremely sarcastic statements we have to put a dollar in the jar, at least that’s how it started out. Then we realized we would go broke if we did that all the time, so we put a $5 cap on it, then we just started putting in $5 a day for anywhere from 4 to 7 days a week. I guess we basically put in what we can; we got the idea for the television show ‘New Girl’. The jar is our vacation fund. Any time we go away, the jar pays for it. It paid for most of our honeymoon and just about every trip we have been on, and it will be paying for this trip that we are about to take. It’s awesome to be able to go away and not feel like you’re paying for anything.

Understanding and Accepting Mental Illness

I was talking to my husband this morning, we were having a conversation about something and then suddenly I changed the subject. I thought he was following along with me, I thought he understood, but apparently I just started talking about something completely different with no notice. My brain was thinking too fast; there was no way for anyone to keep up with what I was saying. I was going from one subject to another, just a single word would trigger a different thought process and then I would be off on that new subject. I spent about 10 minutes just trying to explain how I got to the new topic I was on, and then I had to explain exactly what it was that I was talking about.

I’m not so sure if my husband will ever really understand how my brain works. How is anyone supposed to understand something that they are not themselves? No matter how much someone studies the bipolar disorder, I don’t think they will every really understand what it’s like to live with this illness. That is why support groups are so important; they bring people together who live with the same diagnoses. Support groups provide comfort and understanding that cannot come from people who do not have the bipolar diagnosis. This doesn’t mean that people without bipolar cannot support us. I have several people who support me. My family especially is very accepting of my diagnosis and they do the best they can to understand what I’m going through. It means so much to me that my family cares considerably, I’m extremely lucky.

In my opinion, others can only understand so much of how we think, but they can accept us for who we are. I know this isn’t easy; sometimes I have a hard time understanding and accepting it all myself. It’s hard to explain to others what I’m feeling, what/how I’m thinking, and what would be helpful. When I’m manic, it can be difficult to slow down enough so I can make sure that I’m making sense, and when I’m depressed, it can be difficult to care enough to explain things to others.

I have found two different country-wide groups. The first is NAMI, the National Alliance on Mental Illness, which supports both individuals with mental illness as well as their family and friends. NAMI has a free 12 week program called Family-to-Family that is meant to educate family, friends, and significant others of individuals who live with mental illness. My mother and sister completed this program when I was in high school. I remember that after one of the sessions, my sister came home, hugged me, and told me she was sorry that I had to live with this. She and I struggle in our relationship at times, but the fact that she cared enough to complete the Family-to-Family program, meant a lot and helped us grow closer. I felt more comfortable around my mother and sister after they completed this program.

The other national support group I know of is DBSA, Depression and Bipolar Support Alliance. DBSA also supports both those with mental illness and their family and friends. The local support chapters are run by volunteers. Their website helps people find local support groups for friends and family members, for parents, and for loved ones as well as support groups for individuals with mental illnesses. They also have online support groups for each of these different categories of people. DBSA also has educational materials and training options so individuals can start-up and run their own peer support group. I used to go to a DBSA support group, and I found it to be extremely helpful. I also met a lot of friends there that I’m still friends with, which is a big deal for me.

Maybe it’s weird that I don’t think others without mental illness can truly understand how I think and what I go through, but it doesn’t mean I don’t think they can care about me or try to understand me. For example, I’ve never broken my leg before, so I don’t really know what it’s like to have that happen to you. I don’t know what it feels like, how much pain it is, how inconvenient it can be, and how you have to change your life so you can heal. I still care about those that I know that broke their leg; I show that I care and that I’m compassionate, but I don’t know what it’s really like. That’s exactly how I feel about mental health. If someone has never experienced it themselves, then they don’t know what it’s like to personally live with mental illness. I’m not sure if that makes any sense to others, but it does to me. Even though no one in my family is also diagnosed with bipolar disorder, they all still try to understand and show me how much they care. I do have an aunt that also struggles with depression, and that brings us closer together. It’s a connection that I don’t have with other family members. My family loves and supports me, and that’s all that matters to me.

Beyond Frustration – Clozapine Refill Issues

One thing after another, it never seems to end. There is always something that needs fixing or needs to be completed. I had my weekly blood work done on Friday and I’ve been checking for the results a couple of times a day. Normally, it’s done and I get the results the same day or early the next morning. For some reason, this week and last week, it took longer for my results to come through, but they finally did this afternoon. Once I know that my lab results are in, I call my pharmacy to make sure they received a copy. I usually spend the first five minutes of the phone call with them telling me they didn’t receive a copy until they finally look in their fax machine to see it sitting there.

They generally talk down to me, as if I don’t know what I’m doing. Today, the pharmacist kept telling me that they need to receive my lab results every week in order to fill the prescription. If only she would have stopped talking, she would have realized that I’m well aware of that and it was even the reason for my phone call. Shortly after hanging up with the pharmacist, I received a phone call from her. She called to tell me that my white blood cell count was high and she was concerned about filling the script. I explained to her that my count has decreased, improved, since last week and that my only current side effect is fatigue/low energy, but it is almost gone. I told her that I would have my psychiatrist call her. Then, she informed me that she would fill the script, but starting next month any time my lab results are off, they would be required to send my results to a central database location. The pharmacist would no longer be able to decide if it is okay to fill the script or not, someone at the central database would have to decide.

Now, I’m sitting here thinking that I could be taken off Clozapine any time if my blood results are off. I’m basically living week to week, never knowing if I’ll be able to get my next prescription of Clozapine filled. It’s adding on so much anxiety to an already stressful life. My psychiatrist says that they need to be concerned about a low white blood cell count, not a high count; however, I have so many more questions.

If at some point the pharmacy, or central database, won’t fill my script, do I just stop the medication immediately or am I supposed to titrate down off the medicine?
What side effects can I expect from going off Clozapine?
What levels of a WBC (white blood cell count) are good, and which are bad?
Is it bad that my eosinophils count is very high? At what level does that count make a difference?
If I have to go off the Clozapine, what medication would replace it? I’m no longer on Seroquel or any other antipsychotic.
How long would it take for a new medication to start working?
How likely am I to have a major episode if I go Clozapine?

Once I know the answers to these questions, I will let everyone know. Hopefully, I won’t have to worry about any of this. Hopefully, my next blood test results will be back to normal. Until then, I am just going to stress over it all.

Managing Side Effects

Managing all of your medications is difficult to do when you take multiple medications. Individuals with bipolar disorder often have this problem. My meds have been changing quite a bit lately. In the past three weeks I added one medication and got off three. I’m off Seroquel, Cogentin, and Lunesta. I now take Lithium, Tegretol, Mirapex, Cytomel, Deplin, and Clozapine on a daily basis as my psych meds. I have Valium, Zofran, and Percocet that I can take as needed. I also have to take hormone replacement therapy because of my hysterectomy. It can be difficult to figure out which medication is causing which side effect, especially when so many things are changing at once.

I’ve been gaining weight for a while now; however, since I started the Clozapine, it has gotten much worse. I seem to be hungry more often. I’m definitely eating much more that I should be eating. I keep trying to stop, or even just slow down, but it doesn’t seem to work. My increased appetite didn’t start until I started Clozapine. Up until now, I didn’t think that this was a side effect; however, it makes more sense that it would be a side effect since I seem to have no control over it at all and because of the timing. This is something I should definitely mention to my psychiatrist, maybe there’s something he can do to help.

I’ve had medications cause all sorts of side effects. For example, Abilify made me go into a manic episode, I started losing my hair on Depakote, I gained 80 pounds on Risperdal, Seroquel causes dystonia, a high Lithium level causes me to shake uncontrollably, Mirapex makes me nauseous, and Lexapro made it harder for me to sleep. Those are just some of the side effects I’ve dealt with previously and still deal with. I started getting treated for bipolar disorder when I was 14 years old, which was 17 years ago. In the past 17 years, I’ve tried a lot of medications and dealt with a lot of bad side effects.

I’ve tried so many different medications that I can’t remember them all. It would probably be a good idea to make a list of all the medications I’ve taken and the side effects I experienced. Then I could just keep the list updated. The only problem is that I can’t remember every med and its corresponding side effect. I do have the notes from my previous psychiatrist that I saw for several years. I could try to go through his notes, but that could also be a very upsetting task. I’m not so sure I want to read what he wrote about me. I suppose I should at least give it a descent try. Having a list of all my past and current medications and corresponding side effects would be extremely helpful for the future.

Fatigue, Low Energy, and Weight Gain

The Clozapine that I started almost three weeks ago has been causing some problems for me. Most of the side effects went away; however, I’m still dealing with fatigue and low energy. The fatigue has greatly improved, but it is still there. During the first couple weeks of this medication, I could fall asleep in the middle of doing something. For example, I fell asleep while I was eating dinner once. Luckily, I only dropped my fork and not my bowl. But for the first couple weeks I was nervous to drive. I was afraid that I would fall asleep while driving, so I took some precautions such as bringing my dog in the car with me, calling someone on speakerphone, rolling down the window, or playing music that I can sing to. Some of these methods were thankfully effective.

I’m no longer dealing with that same intense fatigue that I had before. I’m still tired, but I don’t feel as if I have no control over whether or not I stay awake. I’m just tired; it’s been hard to get moving. I’m trying so hard to get today’s to-do list done, but I have such low energy that I’m not sure if I can get off the couch and even get dressed. I don’t even have many things to get done today, and I’m still having a hard time doing everything. I think the reason my psychiatrist had me increase my Clozapine dosage from 100 mg to 125 mg was because the fatigue and low energy side effect finally started to decrease. I’m so happy that things didn’t really change with the dosage increase. My fatigue and low energy hasn’t changed. I wish it would go away, but at least it’s getting better rather than getting worse.

One other problem I’m having recently is weight gain. I’m not sure if this is a side effect from the Clozapine or what else it could be from. The weight gain started before I got on the Clozapine, but I was gaining weight slowly at that point. Now, I seem to be gaining weight much quicker. I know one factor is because of my fatigue and low energy. I barely have the energy to get up, of course I don’t have the energy to workout like I was doing before. I really need to push myself harder. Maybe I will start with taking the dog on a walk tonight. I know for me, the more I do physically, the more energy I end up having. Sitting on the couch doing nothing makes my fatigue/energy and weight gain issues worse. Hopefully, I can create a new cycle that involves energy and weight loss.

I Hate Confrontation

Confrontation scares me, I hate it; it puts me into a panic attack. I keep everything inside and I do my best never to let it out. I would rather hold it all in and be a complete mess, than confront someone about any situation, whether it’s serious or not. I don’t show my anger, I just keep stuffing it down, holding it all in, although I am a pretty sarcastic person. I know that one day I’m probably going to explode, but I just don’t know what else to do with it all.

When I was in rehab, we had to confront each another in a large group setting using the form, ‘When you…I feel…’ format. It may sound somewhat corny, but it does work, when you have the guts to actually do it. I remember when I would have to confront someone, my heart would race so fast and I would start sweating; I would even forget my words, why I was confronting someone, and even how it made me feel. I would do it while I was in rehab because I had to. Now, I do everything I can to avoid it.

I guess I’m afraid to upset other people. I don’t want to hurt anyone else’s feelings or make someone mad. I would prefer to be extremely uncomfortable if it would make other people happy. That sounds weird when I say it out loud, but it’s just how I am. My therapist is trying to get me to work on this, but it’s not as simple as he explains it. Even admitting to myself that I’m angry is difficult for me, why would I be able to tell someone else how I feel?

There are several things that I deal with, such as my anxiety and fears, and I know where those things originate. I think my fear of confrontation probably comes from the same place as my other fears. My ex used to get very physically and emotionally abusive when I would get upset with him. It didn’t take long for me to realize that I just shouldn’t confront him on anything. I guess I just let that issue seep into every other part of my life. At some point, I need to start taking control again. Right now, that’s too scary for me, but I’ll keep it in my mind as an option.

Weekly Blood Work – Same Phlebotomist

I have been nervous for days now about the blood work I had to get done today. Most of my nerves were because of the inappropriate phlebotomist from last week that kept asking me personal questions and telling me what I should do for my bipolar disorder. I have been practicing all week just what to say to her if she was the one drawing my blood again. I was prepared; at least I kept telling myself I was prepared. I was ready to tell her, “I don’t want to talk” if she asked me a question, or to ask for someone else completely. To be honest, I wasn’t prepared. I took a Valium to calm myself out of my anxiety attack and I went to the lab.

I arrived at the lab and stood in line to check in. I made a 2pm appointment, but they were running late. At least my Valium was kicking in, I was able to breathe, my chest pains stopped, I started shaking less, and my mind began to slow. I looked behind the counter and only saw one receptionist and one phlebotomist. Then my heart started to beat a little faster again, it was the same woman from last time. As I walk past her, she asks me “Did you think about what we talked about last time?” I can’t believe that she was that invasive two weeks in a row, better yet, she broke HIPPA laws two weeks in a row. I was surprised, but my response comment came to me quickly. I told her, “Yes, and I’m happy with the way I’m doing things.” I couldn’t believe it, but she actually backed off. The only other things she said was just normal chit-chat, to make time go by quicker. What I said was nothing like what I planned on saying, but it still seemed to work, and that’s all that really matters.

If she says something to me again next week, I will report her. It’s really hard for me to report her or tell her boss about the situation; I’m not sure why it’s so difficult, it just is. My husband keeps telling me I should report her. He’s probably right; I should probably do it for the people she treats after me. Even just the thought of reporting her, or having my husband report her, makes me start to have a panic attack. I don’t know if I could do it; I don’t know if I want to do it.

An update regarding the Clozapine: My fatigue has been decreasing every day and I have no other side effects that I’m noticing. I informed my psychiatrist these facts and that I completed my weekly blood work today. He told me I could up my Clozapine dose to 125 mg. I was so excited when I heard, I was worried he was going to stop the medication because of my blood work results, but he is still allowing me to move forward on my dosages.

Preparing To Travel

Traveling is something that can be fun to do, depending on several factors such as how you get there, who you’re with, and your destination. I have two different getaways coming up, and I know that it’s time to start getting ready for at least the first one. I want to be prepared for them, and the only way to do that is to actually do the work, both physically and mentally. Traveling when you’re bipolar takes more than just packing. The more prepared I am for the actual traveling, time management, and visitations with others, the more I will enjoy my trip.

My first getaway is this Wednesday and it’s just one night away with my husband. A friend of his is getting married and we decided to go away the day before so we don’t have a lot of driving to do all in one day. Plus we get a night away from our normal lives, which every couple needs to do now and then. I should be looking up activities to do while we are away other than just go to the friend’s wedding. Instead, I’m just anxious about going somewhere I haven’t been before and going to a wedding where I’ll be surrounded my other people. I know that I’ll be with my husband, who makes me feel safe, so I’m sure everything will go okay. I just need to stop playing it all over and over in my head, that’s doing me no good. As I was writing this, I realized I need to start planning some things to do while I’m away with my husband, we like to stay active. With one simple Google search I found a Dolly Steamboat tour and an entire Ghost Town to explore! It was so simple, and it looks as though we will have a lot of fun together. We can start making plans soon when he gets home from work. I’m actually looking forward to it.

My next trip to plan for will take a lot more planning. I’m going across the country to visit my mom and the rest of my family. I will actually be with my mom on Mother’s Day, I can’t wait! The most difficult part of the trip is the flying. I love to fly, my dad was a pilot, but it’s the airports that get to me. People don’t respect each other’s space and everything is crowded from the security lines to the bathrooms. People act as if you’re going to win a million dollars by boarding the plane as quickly as possible; it’s the same problem when it comes to deboarding the plane. I don’t like to be rushed, so I get there early, but that just means I have to deal with the crowds longer. All I really want to do is find a quite place to myself, anywhere I can sit down and plug my laptop in while I wait for my plane. I look for the same thing during my layover. It’s not usually a successful venture, but it’s still worth a try. To keep myself calm I take my Valium and I remind myself all the time that I’m on my way to see my family. Nothing is better than being able to see my family.

I’m going to visit with my mom, nieces, nephew, aunt, grandmother, family friends, and even some old friends I’ve been out of touch with. I’m lucky that my family is extremely accepting of my bipolar disorder and my anxiety. It can be difficult to fit in everything I want to do during the short amount of time I’m there, especially when you’re trying to adjust to a different time zone. This time, I’ll be there for eight days. I’ll get as much done as I can, but I can’t overextend myself, traveling is hard enough already. It is hard living away from my family, I need to take advantage of the time that I do have with them while I’m there. This visit in particular, I’m looking forward to one-on-one time with certain people such as my mom, aunt, and grandmother. I mostly just hang out with my family, but there are a few things I want to do while I’m there. I want to complete my Wellness Recovery Action Plan (WRAP) with help from my mom, I still have to do blood work and get medication, I have a birthday gift for my niece, and there’s a 3D Leonardo Di Vinci exhibit I can’t wait to see. This is all I can think of at the moment. If I want to get all of that done, then I better start planning.

My Side of the Pole

Bipolar – Mental Health

Author: My Side of the Pole