May is National Mental Health Awareness Month. This year the National Alliance of Mental Illness (NAMI) is asking everyone to take the pledge to stop the stigma surrounding Mental Illness. You can do that officially here: Stigma Free. (#stigmafree)
I think the stigma around mental illness has gotten better over the years, but there is a long way to go. I saw this great article talking about phrases you shouldn’t say, I think it’s worth the check out. 9 Phrases You Shouldn’t Say During Mental Health Awareness Month.
Here, I want to talk about how differently we treat and think about people with mental illness compared to other illnesses. For example cancer. Why cancer? Because you’d never make fun of someone who has it, you’d never blame them for having it, if the treatment doesn’t work you’d never say they aren’t doing enough, and you’d treat them with respect and compassion. It is wrong to treat a person with a mental illness differently than you would treat a person with cancer.
Think about that, when you meet 5 people, chances are one of them has a diagnosable mental illness. That’s huge!
There are many reasons someone may not get help, one of them is the stigma behind mental illness. Because of the stigma, they are afraid of how people may react, they are afraid they may lose their jobs, respect from others…. This barrier for treatment has to stop. People cannot feel embarrassed to go for help. They cannot be made to feel they need to tough it out, to pull themselves together, to stop being so dramatic….. We need to acknowledge when someone is having difficulty and let them know you support them. We must also realize that, just like people with cancer, people with a mental illness may not realize it, they may be afraid of the diagnosis, they may not want to face it… If we noticed someone we care about feeling or looking sick a lot we would encourage them to see a doctor. We need to do the same when we see someone who we care about struggling with mental illness. We need to let everyone know they are cared about and supported.
There are many reasons why people do not get help that have nothing to do with not wanting it or searching for it. Often people do not get the care they need because they simply can’t get it. They don’t have insurance. They can’t afford it, even with their insurance. (there are a lot of barriers within the insurance system that keep people from having access to health care, I could write a whole post on just this crisis). We often think there are public places people can go, “the mental health system will help”. This is far from true. There are a lot of hoops one has to go through to get be seen by someone in the system. Often someone with a mental health issue gets way too overwhelmed to be able to do all of this. Even when someone is in dire need of help they often have to wait months to see a professional through the mental health system. Unless a person is “a threat to themselves or others”, it is almost impossible to get in to the mental health system in a timely manner.
These barriers are signs of stigma within the system. Many people need and want help, but can’t get it because of the barriers. We have to break down these barriers. We must break down the stigma that people with mental health deserve less then people who have any other type of illness.
Please take the time to take the pledge to stay Stigma Free.
Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on. I don’t feel like I pity myself, but this hit me hard.
I’ve never said “Why me?”, I’ve always thought, “Why not me?”. However, I have had a lot of losses, and sometimes it gets to me. There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control. I’ve heard the same thing from other people who have chronic illnesses.
I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)
Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again. Something may happen to spark it. It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens…. Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time. Our grief is discounted. People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.
When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.
I recently started having seizures. This means, at least for a while, I am losing even more of my independence. My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me. Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room! This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.
There is really only a couple of things I long for all the time and those are things that cause me to feel guilt. Guilt also has a lot to do about letting go of loss. There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy. We shouldn’t feel guilty, we are sick. We can’t help that we can’t do things…but we still feel guilty. Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families. Personally, I feel a huge amount of guilt because I can’t cook. Hubby does so much, he is spread so thin, and he hates to cook. I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t. It’s too dangerous. It breaks my heart every time he has to cook dinner. I know how much he dreads doing it, and how hard it is for him. (but he really has become a pretty good cook)
Sometimes we are completely irrational for a while when we are grieving. For example, I can get so angry with people, I feel so many people abandoned me. I get so worked up about it and just want to scream. If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated. Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did. It’s my expectations that cause the pain. I don’t know the circumstances, and frankly at this point, it doesn’t matter. But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell. ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.
The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time. It’s okay to grieve what you have lost, over and over again, it’s natural. It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.
Remember, if you lost a loved one, you would always miss them. People do not think this is unusual, they do not think this is something we should completely get over. We lost huge parts of our lives, why are we expected to not miss it?
I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.
What is wrong with me? This is the question I kept asking over the past couple of weeks. Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart. But I don’t think that way….or I try not to. I accept things as they come. I just roll with the punches. Yeah. Well that isn’t how it has been going. I’ve been trying. But I’m not succeeding right now.
It has just been too much. This post is about the latest….
I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!
It started the beginning of this month. I would just suddenly have this whoosh feeling and I’d start to spin. It just felt different. I can’t explain it. Maybe it was different because I had been feeling so off for so long. I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving. Maybe? Really, who knows. But these attacks…they are different. The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.
One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time. We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo. If I had been standing, I would have hit the floor hard! It scared me so much. Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over. It scares me just thinking about it.
When it started I had just had a day completely vertigo free. I could focus on a spot without it moving, the boat stopped. Relief.
What happened for that day? What happened after that day? These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard. I’m an inquisitive person. I’ve always been that way, I want to know how things work, I loved science and proving theories. Telling me that no one knows something about a scientific problem is hard for me. I keep thinking I’ve accepted that. And I have. I have. But I don’t want to. I want it to change. I want to know what is happening to me. What changed? And more than that, I want for people to stop asking me that question. It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone. I want to just scream….I DON’T KNOW! Please NEVER say to a chronically ill person, “Why can’t they do anything?” of “I think you need to find a new doctor.” You have no idea how many doctors I have been to and still continue to consider. However, this is my life. It is my decision how I get treated. You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do. (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so. That’s different, we are going through the same crap…excuse my colorful language.) However, normal people do not understand. Heck, some people who have this don’t understand, it’s different for different people.
So….off that soap box and pity party….
I went to the doctor on Wednesday. Yes the doctor here in Charlotte. He really doesn’t listen. I will not go back to see him. I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor. (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.) They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s. I will be doing some research, but if he is the head guy…I am up a creek. Let me tell you about my latest visit.
I did get an appointment rather quickly, that was nice. We got to the office and I had to be taken in by wheelchair. They thought I was in a wheelchair because I had back surgery?? I never said I was having back surgery. I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?) He asked me about these attacks, how long they have been happening and what they were like. I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning. He asked me to describe the attacks. I looked at him and said. “You know what a Meniere’s attack is like.” Yes, I was a bit snarky. I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there. He said “Yes, but I want to know what your attacks are like.” I started to tell him, I told you last time, but I didn’t. I said, “severe rotational vertigo, severe tinnitus, want to die!” “Yes, that’s normal” DUH! Stuart them tells him how much my eyes have been vibrating with these attacks. I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before. My eyes really dilate, and I have nystagmus really bad during an attack. I need light or I get really sick, but lights also hurt because my eyes are so dilated. My eyes hurt so much after just a few minutes, after hours…well dang! So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating. Poor thing felt guilty he hadn’t really noticed as much before. I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.
Back to the visit. The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast. I tell him…that makes me sick. He keeps telling me to look at it. I look but I will not look fast. I am not going to throw myself into a spin in his office just to perform his little test. (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast) I had already taken 3 or 4 Valium that day because of the attacks I’d already had. I can tell he gets frustrated with me when I don’t do the test as he wants. oh well. He asked what I take for my attacks, I told him, Valium and Phenergan. He said, well that’s the best. He asked if I had this happen before. Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast. My ear doc had to put me on steroids that tapered off slower. He said, I told me I only have attacks 2-3 times a year. I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day. He said nothing. He paid NO attention to that. He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating. He really heard nothing I said about how this is affecting my life. He heard nothing about how I can’t focus on things without them moving. He DOES NOT LISTEN TO ME! Why? Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him? He doesn’t understand what this is doing to me.” Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….
So he wrote me a prescription for steroids. Good, that is what I expected. He told me the dose and I thought…That’s High. He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose. He ignored me…”If you have a problem call me” I just told you I have a problem! Listen to me! I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin. He said, “This won’t make you spin, but if you have a problem, call me.” Hmmm, are you listening to me?
I got the prescription and started it. The next day I couldn’t stop crying. I looked that the dosage….and the tapering. 60mg a day for 14 days! then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea. 14 days then 2 days each…that’s a pretty fast ramp down! and 60mg of prednisone for 2 weeks!! I will be going out of my mind! It is very hard for me to deal with these emotional swings with my bipolar swings anyway. It makes me feel like I am having bipolar episode, and it drives me crazy. I can’t trust my own emotions. I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff. So, I thought….I can’t do this. I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there. It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different. I’m following his dosage. He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect. a much slower taper down, and I know I did fine with it. I will also be taking half as many pills.
Is this the right thing to do? Should I be treating myself? In this case….I don’t really think I’m treating myself. I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up! But I know my tolerance to them and I know they do mess me up. I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive. I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing. We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me. (My point…as I say in my disclaimer, I am not giving medical advise. I do not advise anyone to ignore what their doctor tells them. This is just my story.)
Good news. The steroids are helping. I’m on day 3 now. The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot! Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night. Yesterday, I didn’t have an attack. I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long. So it looks like things are getting better day by day. Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.
that is the story of my last couple of weeks.
It has been hard.
The last few months have been hard. Physically and Mentally. It has also been hard because the doctors I trust are 300 miles away. I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings. I moved here feeling so much better, with so much hope, so much promise. I thought I was ready to handle anything life through at me. I was wrong. I’m still trying hard to live in the now. I’m trying to accept things as they are, and accept my feelings … nonjudgmentally. that is a BIG thing. I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright. I’m just not there yet. Right now I’m hurting, and I need to be here for a little while, and stop judging that. I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now. And I’m not going to judge that. I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.
I admit I had not heard of Blog Action Day until yesterday. I left a comment on fellow blogger Kitt O’Malley’s blog and she told me that it was worthy of a post for this year’s theme Inequality. Kitt is an amazing mental health advocate, please go and check out her blog. Kitt O’Malley – Living with Bipolar. Loved by God.
Inequality and Access to Mental Health Care
Sometimes you need help. You may or may not want it. You are a risk to yourself or others. A stay in a psychiatric facility is needed. The care you receive will vary drastically depending on your financial means.
This is my story…..a 30 something white woman, with not the best insurance, with no savings, and no other financial support….
I was involuntarily committed to a psychiatric facility, I was suicidal. I had called a Suicide Help Line and was talked into coming in to a mental health facility to “talk”. They wouldn’t let me leave. I was taken from there to the psychiatric hospital in the back of a police car. It was scary. Really I wanted to be committed, I was afraid of what might happen, but officially it was involuntary. My insurance would only pay for inpatient treatment if it was listed as involuntary. However, once I got in, I wasn’t told my rights.
I wasn’t treated badly. I actually had a good stay for the most part. There were no windows my room. The view from my window in the main room was through a thick metal screen, it was more like a prison. But it was a nice atmosphere for the most part, and it was clean and the people were good and they had really good food!! It was surprising to me how much the patients were supportive of each other. There were times when you would hear screaming and there were times when everyone was rushed into their rooms and closed in….but for the most part, it was a quiet and restful stay. This hospital had separate wards depending on the seriousness of the illnesses. This is not always the case.
My biggest problem was the psychiatrist they made me see. He made me very uncomfortable. I was a rape victim and he gave me the creeps. He insisted on being in the room alone with me. I complained and complained and I couldn’t get this resolved. He said I had Borderline Personality Disorder and my complaints were part of my disorder. (I had already been diagnosed as being Bipolar. This diagnosis was again confirmed by a different psychiatrist.)
My second problem was I was told I needed to stay beyond the time my insurance normally pays and that they had gotten approval from my insurance company for the extended stay. They didn’t do that. Since they didn’t get that, my insurance didn’t want to pay for the rest of my stay. Well I had no way to leave. They wouldn’t let me. Plus, I didn’t know they didn’t get approval for the rest of the stay. I left there with a HUGE bill.
This stay ended up making me almost declare bankruptcy. did it help me mentally? Yes. Mainly because it got me in the system and I was able to continue treatment.
I did end up not having to pay for the psychiatrist outrageous bill he tried to saddle me with because of the complaints I had made against him and the many request to have him removed from my case. I also had most of the bill from the hospital dropped because they didn’t get it authorized, and since I was involuntarily committed I couldn’t be held legally obligated to the papers I signed when I was admitted. I wasn’t of “sound mind”.
However, I lost my job. I couldn’t pay my bills when I got out. I was single and alone. My roommate stole from me when I was in the hospital. I had no one to help me. If I hadn’t been so determined to get better, and stay the course, I would easily have stopped taking my medications….I had a hard time affording them. I would have stopped going to therapy and to a psych doc….again it was very had to pay for it. However, I wanted to be more normal. A lot of Bipolar people really miss the highs…I did. I’m an artist, and I will say, I feel I creating has been a lot harder than it was before. But I will not jeopardize my health.
These are trials I had and I was really there because I wanted to be. I didn’t have an advocate. I wish I had. There were a lot of things going on with my case that no one told me about.
If I had not been so eager to want to get better, I don’t know if I could have done it.
The system is so very far from perfect!
I worked so hard. I still work hard at it.
many people who are involuntarily committed won’t be committed to working at it.
Many people who need help and want it won’t even be able to get in a hospital because they don’t have the funds.
No one should feel they have to declare bankruptcy because they need help with their mental health. My credit was ruined for years after this hospital stay. I was afraid to answer the phone because of bill collectors. Yes, I was able to finally get the bills straight with the hospital, but it put me in such financial straits with everything else it followed me for years. My employer didn’t hold my job for me. So when I got out of the hospital, I had no job, and a whole lot of bills. I was still in a very fragile state of mind. This is not the ideal way to enter back in society after leaving a psychiatric facility.
Can you see the Inequality in the Mental Health Care system?
Can you see how different it would have been for me if I had the financial means to pay for a higher quality facility, and have an advocate help me?
Can you see how different it would have been for me if I had not had the financial means I had? If I hadn’t had insurance? I easily could have either have been ignored, or put in a state hospital. I could have been put in a ward with people who were very dangerous. I could have gotten lost in the system. These kind of things happen every day.
What can we do to stop the Inequality in the Mental Health Care System?
The first thing we can do is talk about it.
Talk about it more….and more….perhaps the more we talk about it the more attention we call to it.
The more attention we call to it….the more noise we make about it…they will have to do something about it!
How? What? I don’t know. I don’t know how to fix it. I wish I did.
But I do know this is an inequality that must end! People cannot continue to suffer because they can’t afford mental health care.
Note….At this time one of my medications has stopped working, my psychiatrist has replaced it with another medication, but at this point, I am not stable. I have recently read through the past year of my blog and my personal journals and feel I haven’t been completely stable for a long time, but I have been manageable….most of the time. When I reference Bipolar Illness below I am referring to Bipolar I. There are different types of Bipolar, when you think of classic Manic Depression, you normally think of Bipolar I.
This post is going to come from the heart, and will reveal things I haven’t freely talked about outside of my therapist’s office.
From all the tests, and talking, and everything else psych doctors do, my psychiatrist feels I have had Bipolar tendencies most of my life. My first suicide attempt was at 11 years of age, but it wasn’t the first time I thought of it. It just isn’t right for an 11-year-old to think that dying would be for the best. I remember my sister and I had been arguing….I think…I don’t remember what it was about, or if it really even happened. I guess that wasn’t important. I know I silently went into my parent’s bedroom, they weren’t at home, I opened the top drawer of my father’s chest of drawers and took out his pistol. I knew nothing about guns. It was in a little holster thing. I don’t think I even took it out….after all, wouldn’t a bullet go through that leather? I put it to my head and pulled the trigger.
Nothing happened. I tried again……Nothing. By this time I was shaking and thought my sister might find me, I replaced the gun right where I found it, after all it didn’t do me any good. I don’t know if the gun was empty, if the safety was on…or what. All I know is that it didn’t do what I thought it would. What I wanted it to.
How can an 11-year-old child be so depressed that she puts a gun to her head, and pulls the trigger? Was I scared, yes. But not because of the reasons you may think. I was afraid of being caught, afraid of doing it wrong, and very afraid of who would find me and have to deal with the mess.
I didn’t tell anyone. Not for years and years, actually, not until recently. Since then I’ve had 3 more suicide attempts and serious thoughts and plans for others. When I’m depressed I simply cannot believe it will ever get better. The lady in the dark is whispering her promises that it will be better with her, and she is all I can hear.
When I’m more level, or a bit manic, I cannot believe I would ever think that way. I even have a hard time when others are feeling suicidal. How could that be? I have had a number of friends reach out to me when they have felt the cold comforting hand of death reaching for them and they are so very tempted to reach out and take hold. I often just can’t understand how they could feel that way. They have friends, they are loved…look, they have me. But didn’t I have friends? Don’t I have friends? Was I not loved? Then why…why can I feel it would be so much better if I simply didn’t exist? Please don’t get me wrong, I can empathize with my friends who are going through their own darkness, I talk to them and understand their feelings…or at least most of them. But feeling suicidal is very personal, each person has their own demons. I know I can’t understand all my friend is feeling because their demons are their demons and I can’t hear or see them. I can only see the light on the outside, and try to help them see a little glimmer of that light, just enough to give them a bit of hope. However, I would never judge a person who cannot find that hope….that flicker of light that they need to help them out of the darkness.
Many people think ill of those who commit suicide, and even those who have fought the battle and continue to fight. I’ve heard how it’s the most selfish thing someone can do. How they are doomed to everlasting hell. I don’t think like that. I know many people who contemplate suicide do so because they think they are such a horrible burden on the people they love. They are trying so hard not to be selfish. They do not want to cause those they love any more pain. Yes, the pain from the suicide is something a loved one cannot get over, but to the person who is deeply depressed and sees this as the only way to save their loved ones…it is the most selfless act they feel they can perform. Do I think someone who commits suicide is doomed for everlasting hell….no, personally I think they have already been living in it or they never would have committed suicide in the first place.
Suicide is not performed by people who are mentally well. I will never judge a person until I have lived their lives while looking through their soul. A mentally ill person does not see things the way a healthy person does. My views on suicide are just my own. Please do not judge me. And please, at this time, do not argue with me….I’m not even sure I could handle a grown-up discussion of different views. You see, I’m having trouble with my medication, and I’m not stable. I need to release some of these feelings, but I’m not stable enough to debate them. I promise, when things are better, I will open this discussion up again, if anyone wants me to, and we can discuss it then.
Oh, the Bipolar…..That is what I started to talk about isn’t it. It isn’t all about the depression that takes me to the depths of my own hell. There is that other side, the euphoria of mania. It can be so seductive. Many people who are Bipolar I, will often stop taking their medication because they feel numb. No, they don’t miss the depression, but the mania….it’s like a drug. Some of the best artist (of all kinds) have been Bipolar, or more as it was more commonly known, Manic Depressive. When one decides to go off their medication, I don’t think they think about the depression that seeps the life out of them, they are thinking of the high they get from the mania. Speaking from experience, it is so very hard to feel that high of creation when you are taking your medication. I used to have sparks of inspiration and spend days in my studio, never leaving, barely sleeping….painting, and painting, and painting….I have never felt that surge of creativity since I started my medication nearly 20 years ago. Do I miss it? I could never express into words just how much I miss it! I do not believe I have created a piece of artwork that stands up to anything I created before I was diagnosed. So yes, I miss it. But do I miss it enough to risk the rest….NO.
Bipolar doesn’t just include the extreme lows of depression and the euphoria of mania….it also includes uncontrollable anger, confusion, for some a loss of time, and a myriad of other symptoms…always to the extreme. I used to notice when I got happy from something, it simply didn’t stop. I didn’t just get happy, it kept growing and growing….oh it’s so hard to explain, but that’s how I felt about most of my emotions. The emotion would start, like any normal person’s emotion would, but my emotion wouldn’t stop….it grew, to the point where I felt the emotion was no longer mine, I was the emotion. I have huge gaps where I simply lost time. I have no idea what happened during that time. There have been out of control arguments, but I can’t remember anything about except the anger.
When I first started getting serious with Stuart I decided I had to be honest with him if we were going to have a real relationship. It was very hard to tell him I have a mental illness, I am Bipolar. Due to this, I have no idea how many men I have slept with. He took it like the man he is, with grace and sympathy. He held me while I cried and explained more about my illness. How I was being treated…ect. (He is a very good man.)
There is much more to my story, some I can never tell, because I simply do not remember it all. Some I can tell…perhaps I should write a book. *smiles*
Please forgive any typos, or grammar errors…or anything like that. I started to proof-read this and needed to stop. If I have offended anyone I apologize. I hope I have brought a little bit of understanding about what it means to be Bipolar I. Or what it means to be me.
I wanted to let you all know I’m OK, I know I haven’t been around for a while.
I have had some challenges – emotional, physical, and mental.
Wendy – photo manipulated by W. Holcombe
First, the trip to Las Vegas, was postponed and we have no idea if it will be rescheduled. This doesn’t give me a good feeling about the company, and that’s sad, because I think Stuart would have liked that job, and we could have saved a lot of money living there. But hubby has had other interviews since then, and it looks like he will have multiple offers…I’m just not sure if he will be happy at these jobs, but right now we don’t have the luxury of him being able to be that picky, and that worries me. We also won’t be able to save as much money as we would have at the job in Las Vegas. (about the same salaries, but in places where the cost of living is higher)
The week of Thanksgiving my father was diagnosed with liver cancer. He has been sent to many
My Father (he’s a bit thinner now)
doctors for many tests, and still he must have more test to determine if the cancer has spread. If it hasn’t the cancer may be operable. It appears to be contained at the moment. I feel guilty I can’t help, and I feel guilty that I would be afraid to help if I was able. I took care of my mother when she had cancer, it was the most difficult thing I’ve done, and the most rewarding. But my mother and I were very close, my father and I have always had a strained relationship. Don’t get me wrong, I love him, we simply have different outlooks on things, and I don’t see him being the easiest person to care for. I feel like that makes me such a bad person. However, I also know, if I was able, I would swallow my fears and help in any way I could. Right now I am hoping he is not in pain, and will not have to go through the horrors of advanced cancer. His birthday is tomorrow, he will be 81. I don’t think he looks it. My father has a full head of the most beautiful white hair. Well enough about that for now. I’ll know more soon.
My asthma has been acting up horribly. I start coughing and wheezing with just the tiniest bit of exertion, and just forget about laughing, that will send me into an asthma attack faster than anything. I almost had to have an emergency visit because of it, but a double treatment with the nebulizer calmed things down. I was doing better for a while, but it’s sad to think that I have coughed every day for over a year. I have also been having sinus drainage, this has not helped the cough, and sore throat (from coughing), but I can tell the difference in the cough. The production is different…let’s just leave it at that. My whole body hurts from coughing.
I haven’t been able to make it to the audiologist to have my CI adjusted, so people are still sounding a bit like they have huffed helium. I’m getting awful sound headaches after wearing my CI’s for just a short amount of time if there is more than one noise in the room. (like the TV and Stuart talking). But I’m pleased to say, I’m still hearing more music than I have in years!!
I’m having some pretty bad headaches/migraines lately. I’m not sure the Botox really helped much this go around, and that makes me pretty darn sad. However, I think a lot of it is my Intracranial Hypertension. I wake up with a horrendous headache almost every morning. Another major trigger, is a deviation in sleep pattern, and I can tell you, my sleep pattern simply doesn’t exist! I am not sleeping well. Some days it’s because I cough all night. Some days I don’t know what it is. The other night I felt like things were biting me….like little no-see-ums. I drove me crazy. So sleep is erratic, and that’s a major trigger for my migraines and vertigo. Yes, that’s acting up too. I keep feeling like I’m on a boat, not a great feeling.
I’ve noticed I have pretty severe social anxiety. I do not want to go anywhere. I don’t want to be around people, especially people I knew before all this started and I haven’t seen much of them (if I’ve seen them at all) since then. I don’t want people to see that I’ve gained so much weight. I don’t want to be in a situation where I’m lost because I can’t hear. I’m terrified to have an attack in front of people. I feel I have so many phobias now I live in fear. The only places I’ve been since we have returned from Tucson is to the doctors, and to a couple of restaurants (this took a lot of courage for me, and we had to go on off times so the restaurant would not be crowded). Every time we go out, even to the doctor’s offices, I get so worked up I have to come home and rest. (all my spoons are gone!)
I don’t feel like anyone understands me. I wish I had some local friends with chronic illnesses that felt well enough to visit. I think part of this started because I can no longer drive, so I can’t go anywhere by myself, this puts me in the mind set that I shouldn’t be out. Or maybe I’m just trying to justify the phobias a bit more. It’s not good to be isolated, I know, but I’m really scared, and often I get so sick before going out that I simply can’t go. You can’t imagine how many doctor appointments I’ve had to reschedule.
On the other hand, there are days I think I can do things I used to do, so I try…and usually fail miserably. This doesn’t help my self confidence about going out.
I think the title of this blog post is wrong. This turned out to be much more than a little update, and I’m cutting it short!
I’ll be back soon. I have much to share. Plus photos of my new CI’s.
**warning to readers….this is a graphic letter. Things I really wish someone would have told me and helped me with, some may be offended by the frankness. There may be some major mistakes in the writing, I tried to read it over, but just couldn’t.
Dear 16 year old me.
Hi Wendy….You won’t believe it, but I am now almost 50 years old.
I know you are confused. I know it’s hard to believe that I could be writing you from the future, but please just sit back and listen. I hope to help make these coming times just a little bit easier. Please know, I love you, with all my heart. You will go through times that you don’t like yourself very much, but know you will. I’m just hoping you can start a bit sooner.
Recently you have been very depressed, and confused. Some days you are very happy, a bit euphoric even, and other days you don’t think you can carry on. Everyone thinks you are going though normal teenage hormones, just growing up. You are, but you are also dealing with a bit more. You need to make someone listen. Your mother has always been your best advocate. Sit down with her, talk honestly. Tell her just how depressed you have been and that you need to see a mental health professional. I’ll be blunt, you have Bipolar disorder. Don’t worry, you can be treated. But hopefully, you can catch this much earlier than I did the first time around. In my time line you went through many hard years and many heart breaks. You still live with the fall out from those times. If you can get help now perhaps your life can go much smoother. (much easier.)
If you can’t, there is one thing I suggest…STRONGLY. Be careful with your sex life. You will feel, once you are “soiled”, it isn’t worth the fight. It is. YOU ARE! You will lose your self esteem. You will lose so much. When you get into therapy, finally, you will have a good therapist, but she will not understand. She will acknowledge your past problems with abuse and see you think a man will only care if you give yourself to him. She will say. Sex is ok, but only if you really want to do it. You will often feel that you really want to do it. Please Wait. Wait many times. Wait until the relationship is so much more. Do not jump into a sexual relationship until the relationship is more than just sex. Please take this more seriously than you can believe. It will change your life!!!
Stay close to your mother. Give her a break much more often than you do. Take her off the pedestal. She can’t read your mind, STOP being so passive aggressive. It carries on to other relationships and you don’t need that. You lose her much too early. She encourages you and stays by your side through everything, but unfortunately she doesn’t live to see you completely stable. Savor the years you have. You will be so very close, but you do put her through many worries. Try to lessen those for both of you.
You will start to have some health issues. Hearing issues, vertigo….you think you are having food poison many times…there are many breaks between these sicknesses. You are heading toward a hard fight with a hearing disorder that will cause a lot of balance issues. There really isn’t anything they could do if you found out earlier. So don’t sweat they you don’t find out until later. But if you find out earlier, it might help you in your career.
Dare to be braver. Work harder on your art if you REALLY want to. Don’t be so scared to fail. You will only have a few years to be able to work at this. So if you fail, it’s not a big deal. But if you succeed, and I really think you could, think of how you would feel about you! I believe in you. Looking back, you could have done so much more. Work on your muse! Find what inspires you the most! (oh and in college…start out as an Art Major. add in Art Education, but don’t waste time, if you do you will run out of financial aid before you know it and will not get the education you deserve.
You will have some health issues that change your life….so you change your life to go along with it. You still have a good life. You have a wonderful life, even with everything that you go through, you find a way to make your life meaningful.
You do meet the most wonderful man, and have a joyous life with him…but it won’t happen until you are in your late 30’s, you marry at 41. Do not worry. It happens. Don’t fret. And don’t think there is something wrong with you. Focus on your happiness. This man will stand beside you through all your health issues. You will have a better relationship than you ever thought imaginable. He is worth waiting for.
Focus on YOU.
Study things you want to learn.
Dive into your ART.
Study Yoga…you will love it.
Become as healthy as you can, you will need it later.
Take care of you…And trust your heart…don’t listen to those who are just looking for fun for the moment.
Hopefully, if you listen to this, and get treated early, you will have an easier life.
Don’t take things so seriously….however, when you believe in something, don’t let others pull you away from your beliefs. In that same vein….do not get too caught up in other people’s beliefs without really looking into them. Make sure they are what you believe deep in your heart, and the that the facts are sound.
Question everything.
Love Deep.
Laugh Often.
And Cry Less.
Look for Beauty.
And appreciate Life.
From your future self, who hopes things turn out a bit differently.
The following definitions of the different types of Bipolar Disorder is copied from the Mayo Clinic website. You can find the entire article here: http://www.mayoclinic.com/health/bipolar-disorder/DS00356 It’s a very interesting article if you want to know more about Bipolar Disorder.
“Bipolar disorder is divided into several subtypes. Each has a different pattern of symptoms. Types of bipolar disorder include:
Bipolar I disorder. Mood swings with bipolar I cause significant difficulty in your job, school or relationships. Manic episodes can be severe and dangerous.
Bipolar II disorder. Bipolar II is less severe than bipolar I. You may have an elevated mood, irritability and some changes in your functioning, but generally you can carry on with your normal daily routine. Instead of full-blown mania, you have hypomania — a less severe form of mania. In bipolar II, periods of depression typically last longer than periods of hypomania.
Cyclothymic disorder. Cyclothymic disorder, also known as cyclothymia, is a mild form of bipolar disorder. With cyclothymia, hypomania and depression can be disruptive, but the highs and lows are not as severe as they are with other types of bipolar disorder.”
There is much more to know about Bipolar Disorder, but I won’t bore you with tons of details when you can look them up. I know most of my readers like to research things. This post is more about my experiences being Bipolar.
I have Bipolar I disorder. When I would have an episode, it disrupted every part of my life. I lost jobs, relationships, once I lost the place I was living, and I almost lost my life more than once. During my episodes I would have periods of lost time. Once, I couldn’t remember almost a month of my life. Most of the episodes when I lost time were episodes of mania.
The depression episodes, sent me into the deepest darkest caverns of despair. I was convinced no one cared, and the world would be better off without me in it. I was in such agony, and couldn’t see any way out of it. I thought of suicide many times, and attempted it more than once. One time I came very close to succeeding. I was involuntarily admitted to a mental hospital for nearly 3 weeks. My best friend of 9 1/2 years and roommate decided she couldn’t take it and moved out the day I was released from the hospital. I lost my job. There were a few jobs where I lost control, was convinced my co-workers or boss were out to get me, and I walked out. With nothing to fall back on.
The mania was at times sweet. (this causes many not to stay on their medication, they miss the high of mania) I would have creative binges. I would paint for days on end, often not eating or sleeping. But it had extreme down sides. While in a manic state I didn’t think anything could hurt me. I tried drugs, I had risky sexual exploits, I spent money I didn’t have… During one manic episode I bought a Jeep, had the people at the dealership take the top down before I left the lot, and then drove to Washington, DC to meet someone I’d only talked to on the phone, or emailed. He did work for the same company I did, but in a different city. No one knew where I was going. I was lucky, when I think of what could have happened, I shudder. (BTW – it took me a long time to figure out how to put the top on my Jeep) I would get credit card bills for things I didn’t remember buying. I loved to treat people when I was manic, and I loved to buy gifts. I would meet people who knew me, but I didn’t remember them. By the time I found out I was Bipolar, I was facing bankruptcy.
At times I did what’s called rapid cycling. I’d be low one moment and high the next….over and over. It was mind boggling, and very scary for others around me. I couldn’t keep friends. Mania can turn to anger quickly. I pushed people away, sometimes during awful fights, when I’d say things I didn’t mean. I was cruel.
While depressed I was convinced things would never get better.
I was originally diagnosed with Bipolar disorder in my mid 20’s, after a suicide attempt. Then a year of two later, I was told they were wrong, all my symptoms were caused by hypoglycemia. Depression set in and I was then diagnosed with clinical depression, and put on antidepressants. These sent me into a major episode of mania. I was taken off the antidepressants and told I had anxiety disorder, with another medication change, and another attempt at suicide.
This roundabout when on for some time. One night, I cut myself numerous times trying to get up enough nerve to cut deeper. Instead I called a suicide help line, and ended up being committed to a mental hospital. This was the best thing that ever happened to me. Even though I was once again misdiagnosed while I was there, with Borderline Personality Disorder, the group sessions were very helpful and I was now in the system. This helped me find a therapist and psychiatrist who understood, and helped me.
After getting on the right medication, my life began to normalize. However, I had learned behaviors to overcome. I’d been undiagnosed for so many years, I only knew how to react to situations as I would before. I over reacted to everything. Not to the extreme I would before, but I only knew to run or fight when confronted with strong emotions. I did not know how to have healthy relationships. Finally, after many years of therapy I feel I am the person I want to be. I don’t blow up (most of the time). I have good relationships. I understand that much of what I did in the past was out of my control, but how I live my life now is my responsibility. And that’s OK with me.
I wanted to add, this is one reason having PMDD/PMS disturbs me so much. I’ve worked very hard to understand my emotions, and control them. When I have these hormonal symptoms I again feel out of control, often so quick to anger it scares me. Scares me more than I can explain. I never want to the person I was before.
As of this writing, I’ve been stable for over 15 years. (with only a few minor episodes when my medication needed adjusting.
I started this post on January 3rd. I do not hide that I’m bipolar. I’m quick to talk about it, to share my experiences so others may get help. However, this was a difficult post to write, remembering who I used to be, the people I hurt, the self-destruction… Mental illness and suicide still carry a lot of stigma. Let’s start talking about it. We need to make sure people are not afraid to seek help. We need to help everyone understand that people with mental illnesses are still people.
Picnic with Ants 
I was involuntarily committed to a psychiatric facility, I was suicidal. I had called a Suicide Help Line and was talked into coming in to a mental health facility to “talk”. They wouldn’t let me leave. I was taken from there to the psychiatric hospital in the back of a police car. It was scary. Really I wanted to be committed, I was afraid of what might happen, but officially it was involuntary. My insurance would only pay for inpatient treatment if it was listed as involuntary. However, once I got in, I wasn’t told my rights.
I wasn’t treated badly. I actually had a good stay for the most part. There were no windows my room. The view from my window in the main room was through a thick metal screen, it was more like a prison. But it was a nice atmosphere for the most part, and it was clean and the people were good and they had really good food!! It was surprising to me how much the patients were supportive of each other. There were times when you would hear screaming and there were times when everyone was rushed into their rooms and closed in….but for the most part, it was a quiet and restful stay. This hospital had separate wards depending on the seriousness of the illnesses. This is not always the case.
My biggest problem was the psychiatrist they made me see. He made me very uncomfortable. I was a rape victim and he gave me the creeps. He insisted on being in the room alone with me. I complained and complained and I couldn’t get this resolved. He said I had Borderline Personality Disorder and my complaints were part of my disorder. (I had already been diagnosed as being Bipolar. This diagnosis was again confirmed by a different psychiatrist.)
My second problem was I was told I needed to stay beyond the time my insurance normally pays and that they had gotten approval from my insurance company for the extended stay. They didn’t do that. Since they didn’t get that, my insurance didn’t want to pay for the rest of my stay. Well I had no way to leave. They wouldn’t let me. Plus, I didn’t know they didn’t get approval for the rest of the stay. I left there with a HUGE bill.
This stay ended up making me almost declare bankruptcy. did it help me mentally? Yes. Mainly because it got me in the system and I was able to continue treatment.
I did end up not having to pay for the psychiatrist outrageous bill he tried to saddle me with because of the complaints I had made against him and the many request to have him removed from my case. I also had most of the bill from the hospital dropped because they didn’t get it authorized, and since I was involuntarily committed I couldn’t be held legally obligated to the papers I signed when I was admitted. I wasn’t of “sound mind”.
However, I lost my job. I couldn’t pay my bills when I got out. I was single and alone. My roommate stole from me when I was in the hospital. I had no one to help me. If I hadn’t been so determined to get better, and stay the course, I would easily have stopped taking my medications….I had a hard time affording them. I would have stopped going to therapy and to a psych doc….again it was very had to pay for it. However, I wanted to be more normal. A lot of Bipolar people really miss the highs…I did. I’m an artist, and I will say, I feel I creating has been a lot harder than it was before. But I will not jeopardize my health.
These are trials I had and I was really there because I wanted to be. I didn’t have an advocate. I wish I had. There were a lot of things going on with my case that no one told me about.
If I had not been so eager to want to get better, I don’t know if I could have done it.
The system is so very far from perfect!
I worked so hard. I still work hard at it.
many people who are involuntarily committed won’t be committed to working at it.
Many people who need help and want it won’t even be able to get in a hospital because they don’t have the funds.
No one should feel they have to declare bankruptcy because they need help with their mental health. My credit was ruined for years after this hospital stay. I was afraid to answer the phone because of bill collectors. Yes, I was able to finally get the bills straight with the hospital, but it put me in such financial straits with everything else it followed me for years. My employer didn’t hold my job for me. So when I got out of the hospital, I had no job, and a whole lot of bills. I was still in a very fragile state of mind. This is not the ideal way to enter back in society after leaving a psychiatric facility.
Can you see the Inequality in the Mental Health Care system?
Can you see how different it would have been for me if I had the financial means to pay for a higher quality facility, and have an advocate help me?
Can you see how different it would have been for me if I had not had the financial means I had? If I hadn’t had insurance? I easily could have either have been ignored, or put in a state hospital. I could have been put in a ward with people who were very dangerous. I could have gotten lost in the system. These kind of things happen every day.
What can we do to stop the Inequality in the Mental Health Care System?
The first thing we can do is talk about it.
Talk about it more….and more….perhaps the more we talk about it the more attention we call to it.
The more attention we call to it….the more noise we make about it…they will have to do something about it!
How? What? I don’t know. I don’t know how to fix it. I wish I did.
But I do know this is an inequality that must end! People cannot continue to suffer because they can’t afford mental health care.
To read more on Psychiatric Hospitalization please visit the National Alliance on Mental Illness site. NAMI