Side Effects or Underlying Issues?

Side Effects or Underlying Issues?

I have so many different struggles that it makes me wonder which difficulties have been there all along, and which ones are side effects of medication or ECT. Something has to change. Whatever it is, I really need to see some improvement. Hopefully I don’t have to wait too long. The three biggest struggles that come to my mind are memory loss, trouble finding the right words when talking (aphasia), and trouble making decisions. I mentioned these issues to my psychiatrist the other day. He told me that the aphasia is most likely caused by the Lithium. High levels of Lithium can cause aphasia in some individuals. Even though my Lithium level is low, it can still cause aphasia. I chose not to make any changes to my Lithium because we are already making a couple big changes such as increasing my Clozapine dose and stopping ECT treatments. It’s not a good idea to make too many changes at once. If something does happen (positive or negative), I wouldn’t know which medication change caused the new effect.

The memory loss is definitely from ECT. Since I have decided to stop doing ECT treatments, I’m wondering if my memory will get better and how long it will take for it to improve. Part of me is curious if my memory will get back to what it used to be; I’ve done 33 treatments and I’m not sure if there are any long-term side effects. Some of my medications, such as Lithium and Tegretol, can also cause memory loss. There is a possibility that some of my memory issues are from the medications, which means it’s possible that my memory won’t return to what it used to be. I guess I just have to wait and see about this issue. I hate waiting.

Problems making decisions is another issue I’m dealing with at this time. This is known to be a difficulty with depression. The only problem is that I still have the same issue when I’m manic or even hypomanic. The problem isn’t going away. I have difficulty making small and large decisions. Sometimes I can’t even figure out what to eat when I’m in my own house. My husband will ask if I want to go do something, like go bowling. I don’t know what I want to do, so I just tell him that I’ll do whatever he wants to do. I think that’s frustrating for him, at least I imagine it would be frustrating. Sometimes, he will ask me if I want something. For example, he will ask if I want ice cream. I respond to him by saying that I don’t need any. Then he tells me that he didn’t ask if I needed any, he asked if I want any. I don’t know how to answer that because I don’t know what I want. I wish this was less difficult to deal with, maybe one day it will get easier.

Psychiatry Appointment

Psychiatry Appointment

Late tomorrow afternoon, I have an appointment with my psychiatrist. I’m really nervous about this appointment. He is going to go over my Clozapine blood level with me and change my dose. I’ not really worried about that, but I have just decided that I don’t want to do ECT anymore. I’ve been thinking about this for a while now, but I finally made my decision (I think). Right now I’m going every four weeks. So at the very least, I could just start by taking an extra month off and seeing how that goes. If it’s a disaster, then I can think about going back on it.

I wrote down on paper what I want to say to him because I don’t normally stand up for my opinions.I don’t like any type of disagreements. Since I wrote it down, then I know I will be able to say exactly what I want to say. I’m going to tell him, ‘I am no longer willing to do ETC treatments. The stress on my body, the memory loss, and the loss of words in conversations is too much for me. It has been this way for a while. I tried putting it off, but I can’t wait any longer. I’m not willing to do the Ketamine treatments at this time.’ Hopefully I can stick by what I say. There’s a better chance of that happening since I wrote down what to say.’ I’ll let you all know how it goes.

I Completed My WRAP Plan

I Completed My WRAP Plan

I finally completed my Wellness Recovery Action Plan today; even though I started it over a month ago. I did complete most of it on my own, but I brought it to Connecticut with me so I could get some input from my mom. She was my caregiver for many years, and often still is, which gives her a different perspective than I have. She had some really great insights and ideas that I added to my plan.

My WRAP consists of a wellness toolbox, daily maintenance lists, what I’m like when I’m well, identifying my triggers, what to do if my triggers arise, a list of my early warning signs, symptoms that mean I’m getting worse, what to do when I’m declining, questions to ask myself, my crisis plan, who I give permission to make decisions for me, meds I refuse to take, what hospital to take me to, what to do if someone feels I’m in danger, and many more things. There is also a whole other section to be completed during or after a crisis, called post crisis planning.

The wellness toolbox is just a list of tools that I’ve found to be helpful for me. Some examples I listed are to listen to the song Jennifer’s Rabbit (my mom used to sing it to me when I was a child), cook, play the piano, or look through old photos. I also had to come up with a description of what I’m like when I’m feeling well. Some examples are that I sleep well, I don’t ignore my duties, and I’m willing to try things with the help of others. I also had to make a list of things I need to do for myself every day, weekly, monthly, and periodically. Examples range from taking medication daily, cleaning the house weekly, seeing my doctors monthly, and visiting family every 3 months.

I identified triggers that made my symptoms worse such as being in crowds, feeling judged, and a lack of sleep. I have a list of what to do when these triggers occur, like stand with my back to the wall in a crowd, tell my doctors when my sleep is off, and walk away when feeling judged. A list of helpful activities includes blogging, playing Sudoku, and taking the dog for a walk.

It also has a list for early warning signs which include increased negativity, increased foul language, and uncontrollable emotions. Things I need to do when I see these early warning signs are call my doctors, use my wellness tools, and take my medications. Other lists are about symptoms I have when I’m breaking down or getting worse. Some of my examples are extreme paranoia, hallucinations increase, and not making sense when I talk. A few of the things than might help at this point are to keep track of all symptoms, contact my doctor, and make sure the problems are not due to side effects. I also need to ask myself questions such as, ‘Am I rational and reasonable? Do my meds need adjusting? Do I need to consider hospitalization?’

There is also a crisis plan that goes over many of the same aspects; however, it also has a section for who should take over. I was able to make it clear that if I cannot take care of myself properly, then my husband, mother, and psychiatrist are allowed to make decisions for me. My one stipulation is that my husband and mother must agree on the treatments. I can also list who I don’t want involved in my treatment. Personally, I wrote that only my husband, mother, and psychiatrist have permission; no other family member or friend can make any decisions for me. WRAP also has a section on medications. I wrote in my current meds, dosages, and reason for taking them. I also wrote in what meds I refuse to take, and what meds I’m open to taking. I also said that I’m only open to other treatments that my husband and mother choose after doing thorough research. I wrote in which psych hospital I want to go to, and which one to never send me to.

The WRAP crisis plan is very thorough. I hope that I never have to use it, but it’s nice to have it, signed by my husband and mother, so I know that I will receive the treatment I want and need. Not only does it provide comfort to me because I know that my wishes are clearly stated and understood, but it also makes it easier for my husband and mother if and when they need to take over making decisions for me. I know that being a caregiver is an extremely difficult job; by completing my WRAP, I am attempting to make their lives easier.

I highly recommend that everyone who is diagnosed with a mental health illness take the time and complete a Wellness Recovery Action Plan. Hopefully you would never need to use it, but it’s nice to know it’s there just in case.

Home From A Trip

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.

Wellness Recovery Action Plans

Wellness Recovery Action Plans

I decided to complete the WRAP (Wellness Recovery Action Plan) paperwork. I did one years ago when I lived with my mother, and it was very helpful. It could probably help out my husband as well. WRAP helps people figure out and integrate wellness tools and healthy strategies into their lives. It helps both those with mental health illnesses and their caregivers. It asks open-ended questions and statements such as how are you when you feel well, what do you do to stay well, what are your triggers, what do you do when your triggers emerge, what are your early warning signs, and what are signs that you’re about to break down. These questions are just the beginning of the documents. It will take a while to complete. I will probably ask my husband and mother to help me complete my WRAP.

I think it can be a vital part to the maintenance and recovery of those with mental illnesses to have this type of information documented. The thing I like the most about the WRAP is that it helps us create a crisis plan; informing our loved ones and caregivers exactly what we do and don’t want, such as meds we do and don’t want to take, what hospitals we do and don’t want to go to, and who we are willing to let take control in a crisis situation. Completing the WRAP documents gives those of us with mental health illnesses a voice; we get to make decisions when we are well about how we want to be treated when we are sick.

The WRAP that I chose is from NAMI (National Alliance on Mental Illness) in Austin, TX. It can be found using the link below. By Googling ‘Wellness Recovery Action Plan’, you can find many different options, and if you choose to do one, simply choose the one that’s right for you. It’s not easy to complete; it takes time in order to be thorough. It has helped me and my mother before, I’m sure it will be helpful again.

Click to access Developing-a-WRAP-Plan.pdf

 

Not Having Kids is a Choice I Struggle With

Not Having Kids is a Choice I Struggle With

For multiple reasons, I cannot have children. In 2010, I decided to have my tubes tied. This was an extremely difficult decision. I made my decision because I know what I’m like when I’m manic and when I’m depressed. I have had many episodes over the years, I’ve even lost track of how many, and I came to the realization that there have been many times that I could not take care of myself; I was afraid to be responsible for a child. Also, I have always been on a lot of medication and I was scared to go off the meds during a pregnancy. With the help of my therapist, support group, mother, and friends, I made the decision to have my tubes tied. It was one of the most difficult decisions I’ve ever had to make, but I am grateful for my decision, it was the right thing to do for me. However, my heart breaks any time I see a small child.

Then in 2014, I ended up having a total hysterectomy due to ongoing medical problems. Even though I already had my tubes tied, it felt like a major loss. The surgery went well, but I have struggled emotionally with it ever since. My husband already has two kids, ages 22 and 24 (yes, I married a man that’s older than me). It works perfectly for several reasons; I can’t have children and he doesn’t want any more, we love each other, and we’re best friends (we had been best friends for years before we even started dating).

I get along great with both of his kids. His daughter, my step-daughter, had a baby this past September. I am a 31 year old, extremely proud grandma. We both love every second we spend with our beautiful granddaughter. It can be emotionally difficult for me. I frequently wish that I could have my own children, but I still know that I did the right thing for me. Every person is different; when making any decision, it’s important to make the right choices for you. I made the right decision for me, but that doesn’t take away the difficulty. Just because it was right for me, does not mean it’s easy. I was hoping it would get easier over time, but I’m still waiting for that to happen. Every time I see a baby, baby clothes, or toys, a part of me saddens. At the same time, another part of me is grateful because I know I made the right decision for myself.

At times I can feel jealous of those that are able to have children and deal with mental health disorders. I’m just not someone that can do that. I believe that the only thing that matters is that every person makes the right choices for their own life. No matter how difficult it can be to deal with, I made my right choice.