This is a great presentation/speech. I hope you can watch and share it! It really needs to go viral! Hopefully the correct video will play. It is a TED talk about mental illness and community.
This is a survey by NAMI about experiences with ER mental health services. I believe the survey is for both people with mental illness and friends/family who have experienced the ER mental health situation. Please take the survey to help improve ER mental health treatment. I hope by taking this survey ERs will listen to how to improve things!
Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?
The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.
Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.
Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.
In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.
Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!
Hi! Just wanted to post this to ask people to please sign the petition to the President and Congress to increase funding for research related to finding cures for mental illness. It only takes a minute! Please share with your friends too!
In the United States in the past week we have been shocked and devastated by public shootings. First in Oregon at Clackamas Town Center, then in Connecticut at an elementary school and then in Las Vegas at a hotel. Most people, myself included, are horrified at the violence. Naturally, we now all seem to be debating about how to prevent these senseless acts. Some people latch onto gun control, some people latch onto our violently oriented culture, and some people latch onto mental illness as an issue. I honestly don’t know that there are any answers or actions that society can make as a whole to prevent things like this happening in the future, but this bit of rant is not about answers exactly. What I want to talk about is what is NOT the answer.
What is NOT the answer is scapegoating any one group of people. From my perspective as a person living with mental illness, I am (of course) sensitive to people ranting about how the mentally ill should be locked up or about how all of the shooters must have been mentally ill. Honestly, we don’t know enough about the situations or people to comment. What I have to say time and time again is that statistics bear out the fact that mentally ill people are generally not violent and are, in fact, more likely to be the victims of violent crime than the perpetrators of violent crime. People with mental illness are often more of a threat to themselves than to anyone else. Even if all of the shooters turn out to be mentally ill, that does not mean that all people with mental illness are violent. We can note also that all of the shooters were male, but that doesn’t mean that all men are violent and that all men should be locked away from society or have their rights stripped.
It is distressing to me that so often the conversation will turn into attacks on mentally ill people aka “the crazies” and how to keep them away from “the rest of us.” There are literally millions (or more) people living with mental illness who never harm anyone. If someone is violent AND mentally ill, that does not mean they are violent BECAUSE they are mentally ill. They are violent, because they are violent. We should focus our energies on how to make the world a less violent one with people who are less violent, not perpetuate stereotypes and attack other humans who have done nothing wrong.
I first wrote about taking my Haldol injections back in 2007 in https://kristinbell.org/2007/07/23/the-haldol-injections/.
I wanted to report that yes, I’m still getting the Haldol injections now once every three weeks. Haldol is an antipsychotic medication used to treat psychosis like that found in schizophrenia. I have schizophrenia and started getting the Haldol injections back in late 2000…I guess it was November or December of 2000. The Haldol injections combined with all the other meds I take have been a miracle for me.
So far (knock on wood) I haven’t had many side-effects from the medication. I haven’t yet developed tardive dyskinesia. I hope that I don’t.
I had to start getting the Haldol injections, because I couldn’t take my medications as prescribed. It sounds like a simple enough task, but my illness got in the way of me adhering to my medication regiment, and I’d wind up going off my meds and going crazy. I’ve had a good run with the Haldol. I haven’t been hospitalized since starting it, and if you know anything about people with mental illness, that is quite a feat! :) Without the injection form of the medication I’m pretty sure I’d still be bouncing in and out of insanity and in and out of hospitals.
Haldol is a powerful medication, and not one that people enjoy taking. It can cause a lot of sedation, but in the right dose with the right brain it is a miracle drug. It doesn’t work for everyone, and I probably wouldn’t extoll the virtues of it if I was taking the oral form of the medication. With the injection form of the medication I am able to take less of the medication while still getting the benefits of it. I believe that there are also short-acting Haldol injections for acutely psychotic patients, but I am getting the long-acting injections which metabolize over a number of weeks.
I know that a lot of people, including people with schizophrenia and other brain diseases, are afraid of getting injections of medication. If you are paranoid and psychotic, like I was when I first got the injection, it is terrifying to get the injections. I actually believed that the doctors were giving me a lethal injection to kill me when I got my first dose. It turns out that it was the best thing that ever happened to me, not the worst. Now there are other medications that come in injection forms too. Meds like Risperdal and others. If Haldol doesn’t work for someone then maybe one of the other injectables will work. At any rate, I think it is worth giving them a try. It may take awhile to get used to the meds and to get the correct dosing, but it is worth it in the end.
I thought I’d do a little mental health update, since it has been quite some time since I’ve blogged about my overall mental health. As some of you dear readers may know, I have schizophrenia. I first had issues with it when I was about 15. My first hospitalization was when I was 16. Towards the end of 2000 I got mostly stabilized with my Haldol injections and Zoloft. I haven’t been in the hospital since then! Yay! Quite a long run I’ve had and I hope it continues! For quite some time I had problems getting things done, being motivated and feeling down…that sort of thing, even though I was mostly fine. I think it was last year that I started taking Abilify and it has made a HUGE difference! I’m still taking Zoloft, Buspar, Haldol and some non-psychiatric meds in addition to the Abilify, but the addition of the Abilify was great. I’m doing really pretty well these days. Sometimes I have anxiety, although I think it might generally be related to performance issues with school. I also tried taking Topamax to help with weight loss, but I thought it might be making me stupid and giving me more anxiety, so I quit taking it. I think overall, the Topamax was not helping. It seemed like I was becoming less motivated and more sad with it. I also had that bad anxiety day that I wrote about recently.
So, I think I was just hoping for a magic weightloss bullet with the Topamax. It didn’t work. Boo. I have lost about 90-100 pounds though which is good, but I still need to be less sedentary. I’m also a believer in fat acceptance, but of course it is hard to say that I never want to try to lose weight. I would be an even bigger believer in fat acceptance if I wasn’t actually fat I think!!! hahaha. I know that sounds ridiculous, but it is kind of true. I can accept the hell out of everyone’s fatness, but my own! lol.
Anyway, enough about fatness for now. What I want to say is that I’m doing well on the whole. My sleep patterns have improved with my sleep apnea machine, and while I’m not sleeping on any kind of normal schedule yet, I’m getting sleep every day and mostly at the same time! I still tend to be somewhat paranoid, but I’ve found that opening up with people over the years on the internet has really helped me to realize that I don’t need to be afraid of everyone in the world. I still have some delusional thoughts that blow through my brain now and then, but I consider them to be more of a slight annoyance than a big deal right now. But seriously, it is because of the medicine. If I wasn’t taking my meds, and doing so faithfully, I would be in and out of hospitals and massively psychotic. Some people don’t believe me, because I “seem so normal,” but I have to wonder what THAT means anyway? And, I don’t know, it seems like I should be insulted when people say that to me, but I’m not sure why I find it so insulting! I don’t necessarily want to be abnormal, even though I pretty much am, but I think it just bothers me that people attach a kind of value judgement to the term “normal” as if “normal” is superior. It is definitely easier to live in the world if you are “normal,” but it isn’t the only way to be in the world, that’s for sure. Normal is just such a peculiar word, no?
So, I’m doing fine. Some anxiety here and there, some weird thoughts here and there…a depressed mood now and then, but mostly just good. Which is nice. Thank you meds and thank you lucky stars! So, that’s my update after living with schizophrenia for 24 years. Wow! 24 years! Man am I getting old!!! LOL.
I was just informed of this great project called Schizowhat? that is a website aimed at raising awareness about schizophrenia. For those of you who don’t know, I have schizophrenia. I was first diagnosed when I was about 15/16 years old. I hope others of you who are interested or in some way impacted by schizophrenia will check out the website and contribute! Let’s fight the stigma! Yay!
I hate to be so blunt…okay, I really don’t mind, but my mother really wouldn’t approve of such language. heh. Anyway, it really is a major chore realizing you are fucked up in the head. There’s no easy way to put it and no easy way to realize it.
Okay, maybe I could just say “mentally ill,” but that phrase seems so sterile to me compared to what it is really like to realize you are fucked up. I remember when I first became sick, and for years after honestly, I SERIOUSLY thought *I* was not the one who was screwed up, but that everyone around me needed therapy instead. I probably even told my parents that they should go to therapy instead of me.
Still, my life just seems like my boring old life to me. I hardly seem as messed up as I actually have been in real life. Doesn’t everyone try to kill themselves these days?!? I mean really! Don’t most people have eating disorders? No? What? And the psychosis? Well, I know that isn’t *quite* normal, but it isn’t THAT bizarre once it happens to you. Only, it kind of is bizarre. I guess a little more strange than “normal.” I just have to laugh about it all. It seems so ridiculous! All of it. My whole life really seems spectacularly odd is all. I really can’t imagine a life more “normal” than mine. That is why I am always surprised when I talk about one little thing in my life and people look at me funny.
Anyway, back to the realizing you are fucked up in the head. If you are new to the business of realizing it, just take the time and let it sink in, because it takes a LONG LONG time to really let it absorb properly. I think it is because once pretty much ALL of us were in the “normal” spectrum, even the ones like me who eventually jump ship into crazy-land. It seems to me like everyone pretty much likes to be “normal” in some way, even if you are a “normal” tightrope walker or a “normal” person with blue hair who likes to hang from your piercings. There is still a community for your type of normal out there. When we are kids, we are all sort of “normal.” No one really says to their teacher “yah, I want to grow up to be the guy who walks around the streets talking to voices! YAH!!!”
A lot of people say “oh, you shouldn’t use terms like ‘normal’. No one is really ‘normal’ anyway!” But really, there are NORMAL people in the world, even if the term is somewhat corrupt, so I am going to use the word normal and I’m going to quit using quote marks around it by God! haha.
I know that I am somewhat normal in some ways, but in other ways not so much, and that is okay. We grow up thinking that we want to be superstars and the best of something, but no one really wants to be completely off the charts weird. I’m just going to say, you can survive being weird. You don’t have to be a superstar. It is just important to realize that in some ways you, or at least I, am different from normal people. Part of accepting my mental illness means accepting my non-normalness, because if you think you are normal, you most likely won’t take your medication, and for people like me, people with schizophrenia, you need to realize that medication will and does help if you are on the right meds.
I don’t even know why I’m writing this. It is just something I was thinking about as I was looking out the window today. Specifically, I was thinking with a chuckle how I used to think that it was everyone else who needed a psychiatrist and NOT me. And it was just so hard realizing how it was me that was messed up and me that needed help. That’s all.
I seem to be one of the few liberal-ish people who thinks that the Arizona shooting had more to do with mental illness than politics, and I think it is kind of ironic that a great majority of the Left is talking about “dangerous” rhetoric while simultaneously throwing pejoratives about mental illness and the mentally ill around like “crazy.” Everything from “nutter” to “nutjob” to “lunatic,” “crazies,” “wacko” and every other euphemism for the mentally ill that you can think of—except a plain “mentally ill.” If the Left is really so worried about a culture of bad rhetoric, then I say they should go all the way or go home. In other words, stop calling mentally ill people disrespectful names (of course, the Right is rampant with this too). This kind of vilification of the mentally ill does exactly what the Left is talking about the rhetoric of gunning people down does—it objectifies people and dismisses their humanity. But, I guess that it is okay to diss the crazies, because we aren’t really people afterall are we? We are just wild animals that need to be chained and shot for the good of everyone. Well, that is what a lot of people seem to believe, especially when something tragic happens like the shooting in Arizona. What happened in Arizona was wrong and awful, but despite peoples’ desires to paint the tragedy into black and white terms where there is good on one side and evil on another, in reality the good and evil don’t exist. They are words we’ve made up to downplay and deny the complexities of situations that we have a difficult time understanding. We can do better.
Oy! Have you seen Fox’s new show “Mental”??? Hands down it is awful. Not because the acting is bad or because the sets are bad or anything, but simply because it is completely unrealistic as far as the mental health aspect of it goes! I watched the first episode and I thought “oh wow…this is pretty bad, but maybe it will get better.” Then I suffered through the second episode which was even worse than the first episode! Seriously, if any network was to depict any other group of people like they are doing with mental patients, they would be sued in zero seconds! But, it isn’t like it is just painting the patients in a bad light. It is basically making a mockery of the entire mental health system and the psychiatric profession. Not exactly being anti-psychiatry about the mental health system either, but it is like the writers have NO IDEA about anything related to mental health, so they are just making EVERYTHING up!!! Get a clue people! This show bites hard!
(And by the way, the clip above is from one of the more realistic parts of the show…where the psychiatrist gets naked! lol)
Oh, so I haven’t blogged about this yet, but I went up to Seattle with my family about a week ago and participated in the National Institute of Mental Health-funded research project regarding schizophrenia. I had a really great time and the research team was totally fabulous and wonderful!
So, we arrived on a Wednesday afternoon. They took blood samples from Continue Reading NIMH Schizophrenia Research Participation…
Okay, I rarely write about celebrity gossip, but overnight Britney Spears was taken into the hospital for psychiatric evaluation and I guess I feel the need to comment. From what I’ve heard on the news, she hasn’t slept since Saturday and she’s now on a 72-hour hold. I have also been Continue Reading I Feel For Ya, Britney!…
What is ironic is that I’m here in a hotel room in Seattle up late at night watching the movie “Awakenings” just as I finish my own participation in research related to my own mental illness Continue Reading Ironic…
I just finished reading Elyn R. Saks’ book, The Center Cannot Hold, and I highly recommend it to everyone, especially people who are touched by someone who has mental illness. The book is a memoir of Ms. Saks’ life and coming to terms with schizophrenia. From an early age she recalls having strange thoughts, but Continue Reading A Book Everyone Should Read!…
You might be asked to participate in an eye tracking exercise like the one shown above. All of the equipment is just used to keep your head still and to track your eyes.
I just wanted to let you all know about this schizophrenia research study I am most likely going to be participating in and I hope that if any of you out there are interested, you will join in on the study! Well, as you might know, I got a new job at schizophrenia.com. Well, one day I was visiting the site and an ad popped up looking for research participants for this schizophrenia research study! Here is the link: http://www.schizophreniaresearch.net/Involved.asp
Unfortunately, at this time it isn’t an Continue Reading Schizophrenia Research I’m Participating In…
Are people with schizophrenia infact more logical than “normal” people? That is what one research study seems to indicate. Not a lot Continue Reading People With Schizophrenia More Logical?…
Whew! It has been awhile since I have written a tip/trick. The last few months have been crazy, but not really in a good way. Oh well. The tip I’m writing about today has to do with this special time of year for people. This may be rather specific to people who are in the US and/or to people who celebrate certain holidays. Anyway, in the US most people have some holiday that they celebrate or they go on vacation or just have some time off. The major holidays are Thanksgiving, Chanukah, Kwanza, Christmas, New Year’s Eve and New Year’s Day. Again, I know there are more holidays that I’m sure I’m missing, but these are the big ones. So, here is my tip: Continue Reading Tips And Tricks For Surviving A Mental Illness #11…
<Sleeping graphic from HowStuffWorks.com>
I don’t know why I didn’t think of this tip before. Probably because I haven’t mastered this and should really follow my own advice about it. Plus my dad likes to harp on me about my problem with this a lot…which just irritates me. On with tip 10. Continue Reading Tips And Tricks For Surviving A Mental Illness #10…
The following videos are by Rob aka deidzoeb, a person from YouTube. His wife, Melinda, aka melsbasketcase, is also a YouTuber and Melinda has schizophrenia. She does well when she is properly medicated, but a lot of people go on her channel and try to convince her that her drugs are poison and that she should stop taking them. I hope you will watch all three of Rob’s great videos about Psychiatry Denial. He does a great job of showing how psychiatry deniers are simply wrong and how they try to take choice away from people with serious mental illnesses. I have included all three videos here. Please click to find them. Continue Reading Common Fallacies of Psychiatry Deniers…
Well, I think I have covered most of the basics regarding mental illness, or at least the ideas I had right off the top of my head. But, I haven’t covered this next topic yet, so here we go with number nine: Continue Reading Tips And Tricks For Surviving A Mental Illness #9…
Ah, it has been awhile since my last tip. This tip may not work for everyone, but it is a personal favorite of mine. On with the tip. Continue Reading Tips And Tricks For Surviving A Mental Illness #8…
I don’t know if I am just stating the obvious with all of these Tips & Tricks, but sometimes it is the most obvious things that we forget when illness hits. This next tip is something that I have personally struggled with for years and sometimes a glimmer of it still pops up every now and then. Continue Reading Tips And Tricks For Surviving A Mental Illness #7…