Hello. My name is Wendy. I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease. Unless something amazing happens, they are not going to go away. Sometimes I feel I need to make this statement before anyone speaks to me.
Recently I was asked a few things about my health. This was not by people who see me often, or have much knowledge about my illnesses. This is how I handled a few of the questions, some of it was good, some not so good.
Have you tried yoga? It can really help your balance. I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class. It can only help your balance if you have some to start with! After having a disease ruin your balance system, yoga isn’t possible. (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know. However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga. And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)
I heard about these positions you can get in that will make vertigo go away. Why can’t you just do that? There are maneuvers you can do to help certain types of vertigo. However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer this much if it was so simple to “cure” my vertigo?)
Do you think this could have been caused by all the drugs back when you were younger? Okay, this one caught me off guard. I thought, what the heck is she talking about? I may have experimented a little when I was younger, but she wouldn’t have known that. I must have looked shocked and said, “nooooo?” She then explained, “All those psychiatric drugs they put you on.” I was shocked. How could someone think that the treatment I received for my mental illness caused me to get chronically ill? I’m sure I looked shocked when I answered, “No.” “Well I was thinking….” I stopped and said, “I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease. They have no idea what causes this.” “That’s good to hear, I’ve been so worried about it.” “Well there is no need to worry about that. The medication I’ve taken for my Bipolar did not cause me to get ill.” AHHH!
This last question has continued to plague me. Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?
I have Bipolar I disorder. I take medication for it. I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself when you have a mental illness than just taking your medication.
I have never been afraid of taking my medication. Each time my medication is changed my doctor and I talk about it. We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it. I don’t just take a medication not knowing what it will do to me. No one should do that. If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with. I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something. It happens, doctors are human too.
I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid. It did. I now have to be on medication for hypothyroidism. Am I upset that the medication caused this side effect. No. I went into this with my eyes wide open. At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause. I’m still happy I decided to take that medication and have those years as a stable person. Truthfully, I would take it again today if that was the only medication that would keep me stable.
I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on. Become informed. Know what the medications will do. Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.
Many of you may be thinking that there are times that a certain side effect is unknown. You are right. There are many stories of someone who took a medication and had a severe reaction. There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could. These stories are not typical. We simply can’t live in fear and not be treated because of the “what ifs”.
I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way. I can almost tell you for certainty that I would not be alive to write this post. I will never regret taking the medications that helped save my life.
On this the last day of Mental Health Awareness Month I’ve decided to tell a little about me. I have a story. I feel it needs to be told. If for no one else, this is for me. (This is the very condensed PG version.)
Something was wrong. I didn’t know what it was, but I was wrong. I was wrong inside. I didn’t react to things the way other people did. I knew it. I could see how other people were different. I was always told to be myself. But I just wanted to be like everyone else, I didn’t understand what it meant be “myself”. I spent days in tears feeling like I had this black cloud over me. At a very young age I longed for my life to end. Other days I was flying high. I could not control my thoughts from going everywhere, I could not control my actions, I could only follow them. This wall all considered a natural part of growing up. I was just a moody child, then a hormonal pre-teen, a troubled teen…. I look back and don’t know how I, or the people closest to me, survived. There are many stories from this time that are very hard to tell. They may come out at a different time.
My ups and downs carried on for years, and years, and years…. the older I got the worse it was. After all when you get older your actions have many more consequences. However, when the moods were swinging to either end, those consequences simply didn’t exist in my mind. On the down swings I was fighting for my life, literally. On the up swings I couldn’t rationalize things. I couldn’t see beyond the emotions.
After a failed suicide attempt at 25, I finally started getting some mental health treatment. I was told I suffered from Manic Depression, and was put on Lithium and an antidepressant and started seeing a therapist. Maybe if I had just been able to stay the course that I was originally put on life would have been different, but things changed.
I was re-diagnosed a number of times. Things changed so much over the next few years it was a constant battle of up and down trying so hard to get a grasp on reality. The biggest mistake that was made, I was told that I did not have a mental illness, I had hypoglycemia and the fluctuating blood sugar levels were causing my mood swings. I was so relieved that I didn’t have a mental illness. I was normal like everyone else. I simply had to watch my diet and everything would be alright. I believed this for years and tried so hard to control everything with my diet. If things got out of control, I would beat myself up for not following my diet strictly enough.
People couldn’t see just how bad I was because I was still able to hold down a job, even if I changed jobs frequently, I seemed normal, I was just “moody”. I went through friends like water. Friends I made when I was manic, couldn’t stand the depressive side, and friends I made when I was depressed, didn’t understand the up me. Friends I made when I was in my normal state couldn’t understand my swings and they simply disappeared.
I had a job, but I also had a lot of debt. I lost days. There are huge gaps in my memory. I’ve met people while I was in a normal state and had no recollection of meeting them before. I didn’t remember men I obviously knew very well. I did drugs. I stayed up for days. Risky behavior? There were no thoughts of the risk. Nothing could hurt me. And if it did, so what? In both states there was not much thought about my own safety.
Then the day came when the depression took hold so tightly I held a razor to my wrist and started to slice. I just made the most cursory of cuts, deciding exactly the way I should do this, how deep did I have to go, how much would it hurt, how long would it take….then suddenly I thought….The Mess. There will be such a mess and my roommate will find it. Someone will have to clean up the mess. That thought saved my life. That thought gave me enough pause to call a suicide hotline. I would not tell them where I lived but I promised to go to the out patient center of the mental health department and talk. I drove there, and when I got there I talked and told what happened that night. I could not promise I would not harm myself if I left. I honestly don’t know if I could have or not, but I knew I needed someone to help me. I needed to know for sure that I could get through the next day. I knew if I said I would not be a threat to myself or others then I would not get the help I desperately needed.
Since I was not able to say I would not harm myself I was not allowed to leave, I was told I as going to be admitted to a mental health facility. I admit I actually felt a relief. I suddenly felt safe, at least for the night.
The police came and took me to the hospital. I was entered as a non-voluntary admission. That is the only way my insurance would pay for this, but I had insurance now, this was what got me into this facility instead of the state hospital. I had no idea the amount of debt I was about to get into. I needed help, that is all I thought about. I no longer cared what people thought of me, I no longer cared if this would follow me forever, I only wanted to lie down and never wake up. I knew these thoughts had to stop, I knew if something didn’t change I would end my life, soon.
(If you would like to know more about my stay in the mental hospital please see my post: Inequality in the Mental Health System.) The stay in the mental hospital changed my life forever. I was there longer than I thought I would be. The little overnight stay turned into two weeks, but when I left I was in the mental health care system. I had group sessions set up, I had an appointment with a new psychiatrist and therapist. I had a new lease on life. With another wrong diagnosis, Borderline Personality Disorder.
Soon after starting to see my new psychiatrist it was then determined that I do indeed have Bipolar I disorder. I started being treated with Lithium and other medications again and things finally started to get on track.
It took some time to get the medication just right. It took a lot of time in therapy. It takes a lot of work to get things right and get better. It takes a lot of work to keep struggling through the system. It takes a lot of work to help yourself when there doesn’t seem to be an out.
I’m a lucky one. I was able to find help. I was able to get a correct diagnosis. I was able to get a treatment plant that worked. I’m still able to get the help I need, when I need it. So may people are not as lucky as I am.
There are many obstacles in getting mental health care. I fought hard to get where I am today. I still fight hard to ensure my mental health is a priority. I will never give up.
Too many people are fighting for mental health care and have so many obstacles in their way. If you are one of these people, please don’t give up. Reach out. In my experience, things don’t always go smoothly, but getting help meant my life is so much better than my life was before.
Mental Health Alliance (This site has a lot of useful information, including help getting care without health insurance.)
National Institute of Mental Health
Seeking Mental Health Care: Taking the First, Scary Step (this is a very useful article from Psych Central)
Mental Health Care Awareness Month is closing, but we should always be aware and working to obtain equal and affordable mental health care for everyone without stigma.
I have Bipolar I, that means that I have the highs (mania) and the lows (depression) that go with Bipolar. I’ve been mostly stable for the past 20 years. However, for over 2 years I’ve been fighting depression pretty hard. I’ve been on different medications, but I was not feeling better. I kept thinking it was everything that was happening in my life. Having vertigo almost every day, losing more of my independence, moving so hubby could have a job after being laid off for over a year, having to have my hip replaced due to Avascular Necrosis, well you get the picture.
I saw a new psychiatrist last month, he took me off of one antidepressant that obviously wasn’t working and put me on another medication. It is like a veil lifted from over me, the darkness has given way to light. I no longer cry every day. I’m feeling hopeful. I feel like me. OK, now I’m going to cry, from from relief and happiness.
My new psychiatrist told me something interesting, he said that often later in life a person with Bipolar I doesn’t have as many highs they have more depression. (I’m 52, I’ve shown signs of Bipolar since I was a child.) So he so he decided to put me on a drug that is for Bipolar Depression. The drug is is “a psychiatric medication that belongs to the class of drugs called atypical antipsychotics. It works by helping to restore the balance of certain natural substances in the brain.” It has been a month and I’m amazed at how much better I feel. Even when things have happened that would have upset me, I’ve handled it with ease. How cool is that?
I’m so very grateful that someone and something was able to help.
I haven’t mentioned the names of any of the drugs because I don’t want anyone to think I’m advertising for it. If you want to know, I’ll be happy to tell you in a comment.
today is a good day.
one moment at a time.
Oh no! What a time for a medication mess up!
I was loading up my pill-box for the week and only had 3 of my mood stabilizer…..hmmm, that’s not right?
So, I asked Stuart if there was a refill that hadn’t made it in my case. (I have a case where I keep all of my medications, then I load up my pill organizer every week, if there are not enough pills in the bottle to fill the organizer the next week then we order a refill….easy, peasy….medication is always kept up to date.) Stuart didn’t have any refills for me….uh oh. He said he’d look into it.
We are not using a mail order pharmacy. A new thing with our new insurance. If you have a prescription that is maintenance you have to get it from the mail order pharmacy. So, he goes on-line and it’s right there, with refills so he orders it, should be here within 2 days, no problem. Great!
Big Problem. 7 days later I realized the medication hadn’t come. How did I realize this? I was crying uncontrollably for no reason and let’s just say my moods were going crazy. My head hurt so much I thought I was going have to go to the ER. What was wrong with me??? Wait? “Stuart? Did my medication come in?”, “No?” That means I hadn’t been taking my mood stabilizer for 4 days. Rut Row!!
Stuart calls the pharmacy. Yes, the prescription had refills, 3 to be precise, but it was written as 3 one month prescriptions. They needed it to be one prescription for 3 months. So they had a call in to the doctor to change it. Oh my gosh! Did they think to call the patient to see if they needed the medication sooner than they would be able to get it to me by doing things this way? NO! Stuart told them that I needed the medication NOW, so they put ONE month worth in the mail and I got it the next day, that meant I was off of my mood stabilizer for FIVE days!
This is not a drug you just go cold turkey on. You don’t just stop taking it and not notice. There is reason you ramp up and off of these kind of drugs. Of course, this had to happen just a few days before Christmas…..as in, I got my new pills on Christmas Eve. Can you imagine the hell I have been going through? How have I managed this without going absolutely crazy? Well, I am crazy we know this…..hehehe (yes that is one way I deal with things like this….I try to keep a sense of humor…sometimes it works.) First, I knew how I felt was all because of this medication mess up. My feelings were not me. What was going on in my head was not me. Yes, this is very hard. I am lucky that I have a good friend who understands a lot of this and I emailed her a lot and she was wonderful. I’m also lucky that my husband listens and doesn’t get mad when I’m very unreasonable at times like this, he understands it is the medication. Yes, sometimes he does forget then we both look at each other and take a deep breath and say…..things will be better when the medication gets ramped back up.
Oh yes, that’s another thing, I have to ramp back up on this medication. I couldn’t just jump back on at the dose I was taking, I could have gotten very sick. So still, I’m not quite the Wendy I usually am. I won’t be for another week an a half. You have to ramp up on this medication slowly or you can get a very bad rash that is not a good thing.
I’m also dealing with this by trying to be mindful….yep there’s that word again. I’m trying to just focus on this moment. That has been VERY hard to do. I have gotten all caught up in the Holiday Hype, in my mind. Everywhere I looked people are telling you that you are supposed to be spending time with family and friends. Really, does the TV not make you feel like something is wrong with you if you don’t have a big family and a whole lot of friends to spend the holidays with? Oh I got so depressed. My family? Well let’s just say, I am so not a part of all of that now, but my mind goes to Christmases past when at times like these. Now that my medication is starting to work I’m just fine with how things are, I think it’s a good thing. But when it was all going on I was hurt, and sad and just feeling like my life was so not what it should be. We have no friends here so we were all alone, and I was thinking about how we were cheated out of not having children and well just everything……see where my mind can go when medication is not working???
Deep Breath here huh?
The past is the past.
I can’t change those things.
The only thing I have any control over is today.
Breathe. Just Breathe.
and this is how I live my life most of the time.
This is how I see things most of the time.
This is why I stay on my medication! *wouldn’t you?*
I have some good news!!
I’ve been off of the steroids for a good bit now and no bad vertigo! Yay!! I’m so thrilled! I have to say, I was a bit scared. I tried not to be, but I it was there….fear that the vertigo would start right back up as soon as the steroids came out of my system. So glad the fear was unfounded….see why we should live in the now and not try to predict the future?
I have started Aqua-therapy for my back/hip and I did great in the pool. The physical therapy in the pool is so much easier. I am really hoping it will help. I see the back doctor next week, we’ll see what he has to say. I have been very discouraged about my progress so far, but after just 2 sessions in the pool, I’m hopeful this will help. yay!!
Good news is, in just a short time, I’ll be starting the New Year all stable again.
I haven’t had a full-blown vertigo attack in a couple of weeks.
The aqua-therapy is going well,
and I’m going to making some plans to change a few things around here……so Picnic with Ants is going to have changes….they will happen slowly I’m sure as I’m not able to do things very fast….but we’ll see how it goes.
Here’s to a New Year!
May we all great it with love, laughter, and much good luck!
Tomorrow is my mother’s birthday.
I will be celebrating her life.
I’m very thankful for the 64 years she spent with us on this earth, especially the almost 30 she spent with me.