The Pressures of Advocacy

Often when it comes to the world of mental health advocacy, you find that you stumble into it head-first, having no idea how you got there. Which isn’t necessarily a bad thing, it’s just unexpected, and it takes a while to get your footing. Suddenly, you realize you didn’t leave yourself a trail of breadcrumbs to find your way back out, just in case it all becomes too much for you.  As much of an honor as it is to help fight against the stigma of mental illness and to be the voice of the voiceless, it can be exhausting and time-consuming.

Sometimes your personal feelings fall by the wayside because you’re so focused on the care of others. I know at least in my situation, I’m terrified that one day I may have a serious setback again that requires hospitalization. What does that say to all of the people that have read my book or followed me on Twitter as I declare, you can do this! You are a warrior!

Do I look like a hypocrite telling them to keep fighting as I’m curled up in the fetal position having not showered in 3 days? The whole concept makes me feel like a giant failure. There have been times when I have had to step back or not get involved in certain situations, not because I didn’t care but because I needed to protect myself. I’ve seen some backlash from those experiences, but I can’t let that get to me. As I’ve often stated, I’m not a professional with a degree, and I’m certainly not getting paid to offer my advice, so unfortunately, there will be times when I am not 100% dialed in.

Which leads me to my next point. How do you cope with being an advocate when a loved one dies? In this case, it was my father, and I am devastated. It’s only been about five days. There are times when being online helps me keep my mind occupied, so I’m not perpetually in grief mode. At the same time, it can be incredibly difficult because you can’t participate to the fullest, so you feel as if whatever headway you made is lost. You sit back and watch as others are offered opportunities, or people are looking for writers for a story, etc. and you just have to allow yourself to say no. No matter how disappointed you feel.

Don’t get me wrong; this is not a competition. We’re all on the same team, but there are times when you’re struggling, and you just have to sit this one out, and my brain has a real problem with that.

Last night, I sat down in front of the computer to try to get a few things done. Before long, I realized I had been sitting there staring at it for about 5 minutes, with no idea what I was doing. I couldn’t remember a single thing I needed or wanted to do, and I just completely lost it. I had a horrible panic attack that originated in my arms; similar to that pins and needles feeling when a body part falls asleep on you. I had to drag myself away and hope that my brain would be functioning better today. To a certain degree, it is, but I still feel a nagging sense of panic.

I have things to accomplish today, such as this blog. I’ve had the first two paragraphs written for three weeks. I like to think that both my mom and my dad would want me to keep pushing forward to get to my goal. I wish my mom could see me now. The person I’ve become. I know my dad was proud, he told me so. I think she would be too.

So, as I take this little mental health break, I need to try to understand that it’s OK to step away for a while. Even though we were right in the middle of a whole bunch of projects, I’ll never learn how to process grief if I don’t take some time to do it.

You may see me stumble and even fall for a little while, and somehow I’m going to have to be OK with that. I hope you can be as well.

A little while before my father got so sick, I started a hashtag on Twitter #KeepTalkingMH  I think it’s appropriate for not only the month of May,(being Mental Health Awareness Month) but for mental health in general. While I step back and focus on me for a little while, don’t think I’m not terrified that it will get swept under the rug and never heard of again.  If I think long enough, I can find a vast array of topics to cause me yet another panic attack. So, it begs the question: Is being an advocate giving me additional pressures or am I burdening myself with additional pressures because I’m an advocate?

I personally think it’s both. So, I’m off to attempt to enjoy a day of nice weather and try not to struggle too much with my grief. It’s going to be a long road, but I’ve been on it before.

 

 

 

 

 

 

To the Girl Who Gave Me the ECG, Being Sad Doesn’t Mean You’re Bipolar

 

For the last couple of months, I’ve been facing some additional health concerns. Not necessarily mental health related, although the stress from them has certainly impacted me in a negative way. My family has a history of high blood pressure and heart disease. Both my parents have/had high blood pressure, my mom had congestive heart failure, and my sister was just diagnosed with it as well

So, when I started to realize that they were taking my blood pressure multiple times every time I went to the doctor, and it was always at least a little high, I started to pay attention. Suddenly, I was waking up every single day with a headache, and my right foot, ankle, and calf were often very swollen. So, my dad bought me a blood pressure monitor, and I started watching it closely. It was never normal. Literally high every time I took it. The day I went to the doctor, it was 182/99. When I Googled that, they said that was call an ambulance level.

So, I went to the doctor and he just happened to have a couple of young girls there performing ECG’s and EKG’s that day. I got lucky, I suppose. They were nice enough girls, but sometimes when you’re in your 40’s, you forget you aren’t in your 20’s anymore, and that you really have nothing in common with the younger generation, so I did a lot of nodding and smiling. My husband was with me, and went to go get some blood work done, then came back to the room.

They were using the same goop they use when they give you an ultrasound, which I’ve experienced only to look at whether I have an ovarian cyst, not because I’ve had a baby. These young girls chatted away about their appointments, and how I smelled good. I had to roll over on my left side at one point, and I had fallen on it in the shower earlier that week, so it was a struggle.

I watched the screen thinking about all the times I had watched Teen Mom and 16 and Pregnant, and laughed about how it looked like a baby. I’m on the heavier side, and I was incredibly self-conscious lying there topless with essentially a large piece of paper draped over myself, as the tech chatted away and poked me with the glowing death stick of pain as I came to know it. I made some kind of comment about how hot it was in the room and being overweight you’re always kind of hot. Nobody knew what to say, so I went on a bit about how I had lost some weight, but being bipolar, I got really depressed and stopped taking care of mysel

The girl poking me painfully actually said outloud, “Oh my God, girl! I KNOW what you mean! I swear I am bipolar. Ha ha ha ha ha ha. Seriously, I had this other job, and every night I would get home from work and be so sad, and my boyfriend was like…you aren’t DOING anything with your life, that’s why.”

I was floored. I went through a million things in my head. The room was dark, but I tried to look over her at my husband, knowing he would be in the corner of the room ready to tear her a new one. I could’ve said a million things. I could’ve told her she was lucky she could work, as I couldn’t. I could have said, you’re in the medical field and you’re comparing your day to day sadness about having a crappy job with bipolar disorder. I could have said so much, and yet I said nothing.

I had many reasons for not saying a word. The first was that based on their previous conversations, it would go in one ear and out the other. However, the main reason was I was just so damn shocked that a young woman trained in the medical field could possibly know so damn little. All she did was further the stigma of mental illness and she was totally oblivious. Usually I’m pretty good with thinking on my feet, but I wasn’t on my feet. I was lying on a table half naked and decided that now would be a good time to practice the theory of “picking your battles”

Once I got home, I started thinking about starting a petition that all high school and college students be required to take at least a mental health awareness course. I did start that petition, and it’s making the rounds online but not getting the attention I feel it deserves, so I’ll include the link here. Perhaps, if we can get to them early enough, they’ll know not to say ignorant things to people that truly do have health conditions that aren’t humorous.

Petition Requiring High School and College Students Take a Mental Health Awareness Course

I hope you’ll consider signing it, and not just for someone like me. For the little girl with Autism or the man with Schizophrenia that can’t fight for themselves. I wish I had been able to speak up and tell that young girl how wrong she was, but I guess I haven’t come to that point in my journey yet. There will be a day when I finally know exactly what to say, and I’ll be sure it gets said. You can count on that.

The Origin of #KeepTalkingMH

A few weeks ago, while I was on Twitter, I noticed that a lot of people have hashtags that they’re trying to promote related to mental health. For anyone that isn’t aware, a # plus a phrase is used on Twitter and other social media sort of as a search term.

For example, if you wanted to look up your favorite band, you can go on Twitter and do a search for #bandname and you will see all of the posts that others have made about the band. I hope that makes more sense; I know I had a heck of a time when I first started out.  After being online for a while and seeing the work people were putting into their hashtags, I noticed that it seemed like everyone was trying to promote their hashtag about mental health or mental illness. It made me wonder if there was a way to bring it all together into one hashtag, therefore making the mental health community even stronger. So, I started thinking about ideas, and I came up with #KeepTalkingMH. There’s a website called www.twubs.com where you can make sure there isn’t anyone else using your desired hashtag. If nobody else is using it, then you register it. I recommend paying the $9 fee to have exclusive rights.

My hashtag started to become popular. I picked a certain day to try and get it trending, and although we didn’t get there, we did have some exciting things happen. Celebrities like cast members from Mike & Molly, Kevin Smith, former WWE superstars and announcers, they all tweeted for us that day.

Since then, the popularity has grown. It’s easily found on Twitter, and it allows people to have a voice and talk about how they’re feeling. So, here I am today asking that you jump on the bandwagon and tweet #KeepTalkingMH today and every day!

Remember, it must be an original tweet, you can’t just retweet someone else’s.

To all mental health advocates out there, please consider using #KeepTalkingMH instead of creating a new hashtag. If we had just one hashtag that covered the entire spectrum, and everyone started using it, we could make a change in the way people view mental health.

 You’ve been challenged! Keep using #KeepTalkingMH always and often and let’s see if we can get our message out there!

 

 

 

 

The Pressures of Mental Health Advocacy

Often when it comes to the world of mental health advocacy, you find that you stumble into it head-first, having no idea how you got there. Which isn’t necessarily a bad thing, it’s just unexpected, and it takes a while to get your footing. Suddenly, you realize you didn’t leave yourself a trail of breadcrumbs to find your way back out, just in case it all becomes too much for you.  As much of an honor as it is to help fight against the stigma of mental illness and to be the voice of the voiceless, it can be exhausting and time-consuming

Sometimes your personal feelings fall by the wayside because you’re so focused on the care of others. I know at least in my situation, I’m terrified that one day I may have a serious setback again that requires hospitalization. What does that say to all of the people that have read my book or followed me on Twitter as I declare, you can do this! You are a warrior!

Do I look like a hypocrite telling them to keep fighting as I’m curled up in the fetal position having not showered in 3 days? The whole concept makes me feel like a giant failure. There have been times when I have had to step back or not get involved in certain situations, not because I didn’t care but because I needed to protect myself. I’ve seen some backlash from those experiences, but I can’t let that get to me. As I’ve often stated, I’m not a professional with a degree, and I’m certainly not getting paid to offer my advice, so unfortunately, there will be times when I am not 100% dialed in.

Which leads me to my next point. How do you cope with being an advocate when a loved one dies? In this case, it was my father, and I am devastated. It’s only been about five days. There are times when being online helps me keep my mind occupied, so I’m not perpetually in grief mode. At the same time, it can be incredibly difficult because you can’t participate to the fullest, so you feel as if whatever headway you made is lost. You sit back and watch as others are offered opportunities, or people are looking for writers for a story, etc. and you just have to allow yourself to say no. No matter how disappointed you feel.

Don’t get me wrong; this is not a competition. We’re all on the same team, but there are times when you’re struggling, and you just have to sit this one out, and my brain has a real problem with that.

Last night, I sat down in front of the computer to try to get a few things done. Before long, I realized I had been sitting there staring at it for about 5 minutes, with no idea what I was doing. I couldn’t remember a single thing I needed or wanted to do, and I just completely lost it. I had a horrible panic attack that originated in my arms; similar to that pins and needles feeling when a body part falls asleep on you. I had to drag myself away and hope that my brain would be functioning better today. To a certain degree, it is, but I still feel a nagging sense of panic.

I have things to accomplish today, such as this blog. I’ve had the first two paragraphs written for three weeks. I like to think that both my mom and my dad would want me to keep pushing forward to get to my goal. I wish my mom could see me now. The person I’ve become. I know my dad was proud, he told me so. I think she would be too.

So, as I take this little mental health break, I need to try to understand that it’s OK to step away for a while. Even though we were right in the middle of a whole bunch of projects, I’ll never learn how to process grief if I don’t take some time to do it.

You may see me stumble and even fall for a little while, and somehow I’m going to have to be OK with that. I hope you can be as well.

A little while before my father got so sick, I started a hashtag on Twitter #KeepTalkingMH  I think it’s appropriate for not only the month of May,(being Mental Health Awareness Month) but for mental health in general. While I step back and focus on me for a little while, don’t think I’m not terrified that it will get swept under the rug and never heard of again.  If I think long enough, I can find a vast array of topics to cause me yet another panic attack. So, it begs the question: Is being an advocate giving me additional pressures or am I burdening myself with additional pressures because I’m an advocate

I personally think it’s both. So, I’m off to attempt to enjoy a day of nice weather and try not to struggle too much with my grief. It’s going to be a long road, but I’ve been on it before.

 

Beware of Self Care?

I’ve been going over and over again in my head, trying to figure out why I feel so damn guilty every time I attempt to practice self-care. I advise others to do it, but when it comes to me, I’m almost entirely overwhelmed by the idea. So overwhelmed in fact, that the only thing I can do is lie down and take a rest.

 As much as I love and adore my mom and the person that she was, she used to get very pissed off at all of us in the house. If she was going around dusting or vacuuming, she would just pitch a fit about how it must be so nice to lie around all day. Meaning, me, my dad, and my brothers. If we were in our rooms watching TV, we were just a waste of space.

The last few months have been incredibly rough for me, but the winter months usually are. After a leak in our house left us living in a hotel for a month, we then had to come home and put everything back together. Both the bathroom and the dining room had to be remodeled, the bathroom being much worse than the dining room. We had no dining room for Thanksgiving. We ordered carry out turkey meals and ate them sitting on our bed.

I know it sounds weird, but it wasn’t that bad. No family drama, just us hanging out, watching movies and relaxing. The only downside was that neither of us saw our families. We were concerned we would be spending Christmas in the hotel as well, but luckily we got out just in time. It was December 23rd when we returned, and we were barely able to throw some tissue paper into gift bags for Christmas gifts.

I left the hotel room once the entire time we were there. I was too afraid the staff would come in and let one of our cats out, nevermind the agoraphobia and social anxiety. I went to the laundry room. My heart was racing the entire time, and I dissolved into tears when I got back to the room.

Now that I’m home, I’m virtually chained to my bed. January is always rough with the anniversary of my mother’s death. I expect to struggle then, but all of the other days? There are some days where I don’t even go to the lower level of my house. That’s embarrassing for me to admit, but it’s true. If I can’t even make it down the stairs, how the hell am I going to make it out in public?

For the last few months, the ups and downs have been never-ending. One day, I may get good news about something, then the next day I’ll get bad news about ten other things.

And trusting people? Let’s just say, that concept has been thrown out the window. I don’t know if I’ll ever be able to trust anyone again. Two people in our lives that we needed to be able to rely on turned their backs on us. Then, instead of accepting their part in the argument, just blamed it all on me being a heartless bitch that “sucks people dry until I can’t get anything else from them, and then I throw them away.”

That is the farthest thing from what I am. I don’t think I’ll ever get over the epic betrayal I feel.

I wake up every single day with a headache. If I have night terrors or a very active dream, the headache will wake me up it hurts so bad. Instead of screaming in terror over my dream, I’m screaming because it feels as if someone just hit me in the head with a sledgehammer.

My mom had high blood pressure, and so does my dad. My mom also had a stroke around my age and was diagnosed with congestive heart failure. My sister was just diagnosed with congestive heart failure. I’m starting to see a pattern. My dad was kind enough to buy me a blood pressure monitor, and I’ve been using it every day. It’s nearly always high, but we’re working on it

I’m taking nine different medications now for depression and anxiety and seven different supplements to make me feel better. You would think I would feel well enough to leave my bed. All I can think about it getting that one thing done that I need to complete, then taking a nap.

How do you stop feeling guilty about taking care of yourself?

At what point does self-care become an excuse? I read the articles and the posts about taking care of yourself, but at this point, it feels like a crutch. I don’t know how to stop, and I start sobbing at the thought of it. Am I just lazy?

I know I’m depressed and in 2 weeks when I see my doctor, I’m going to see about switching medications, but until then what do I do? Is this just a lack of motivation or a major depressive episode? Do I even care? I don’t know what to do next or how to feel. I’m just lost in an abyss of darkness.

At this point, I don’t know which way is up. I’ve lost all faith in myself and in my instincts.  I don’t feel like I can trust anyone and the panic attacks are killing me. I always try to end on a positive note, but I don’t know how to do that today because I don’t have any of the answers. Everything I’ve tried to make myself feel like a productive member of society has failed. All of my hopes and dreams have been decimated, and I feel so lost. I know there are others out there that feel this way. I guess that’s what is keeping me going despite myself. I’ve spent so much time telling people that I’m a survivor and that they can’t give up. It’s looking like I’m going to have to start telling myself that. I can’t just give up and make it look like it’s OK.

I’m just going to keep trying little by little to make it through. Keeping my fingers crossed the whole time that nothing else in our lives falls apart because I can’t handle that right now. I’m just going to keep one foot in front of the other and try to shrug off the feelings of guilt on the days when all I am capable of is just simply breathing.

 

Agoraphobia vs. Social Anxiety

Agoraphobia is a condition that I suffer from, but I don’t speak about it very often. I think because it’s difficult to explain. At times, it can be nearly impossible to separate Agoraphobia from Social Anxiety. I wanted to look into it and determine whether I was confusing the two conditions and whether it was possible to suffer from both.

Agoraphobia is defined as a fear of leaving your home. Many people with Agoraphobia are house-bound, even room-bound. Truth be told, there are days when I don’t  leave our bedroom. Agoraphobia refers to the fear of being in situations or places from which escape would be difficult in the event of a panic attack. We often fear crowds, cars, and even elevators. For me, it has become such a nuisance that I even fear just going to the mailbox in front of our house. If I spend too much time in an elevator, I begin to panic. I start feeling like I can’t breathe.

Both Agoraphobia and Social Anxiety are often referred to as a fear of public places, people with Social Anxiety most often fear places where public scrutiny can occur. The more articles I read, the more it all began to make sense. One article even mentioned that Agoraphobics could feel better with a trusted companion when they’re in public. I find this true for me but only with my husband. It’s not often that you suffer from both conditions, but when it does happen, it’s in women.

I can’t even count how many events or appointments I have missed due to one or both of these conditions. Add to that issues with your weight and self-esteem, and it’s a nightmare. I am constantly dissecting every single flaw that I have, and because I am so critical, I expect that everyone else will be too. All I see when I look in the mirror is an overweight mess. In the last few months, I’ve even avoided having anyone come to our house because of how terrible I think I look. It’s a horrible feeling to be terrified in your own home.

It’s been more than a year since I drove myself anywhere. I was recently gifted a vehicle, and I still haven’t driven it. We let it sit for three weeks, and when we went to start it, the battery was dead. I saw that as just another sign. My husband takes it on little trips to the store now so that we don’t have that problem again, but what can I do about my dead battery? I’ve isolated myself for so long, rarely leaving the house. I don’t know how to fix this. Sitting here right now, I can’t remember the last time I went anywhere. I keep telling myself that the more I avoid any attempt at getting out, the harder it will be to do it once I have something important that I must do.

I’ve been struggling for months, just barely holding myself together. I hide behind sarcasm because I don’t want anyone to see the real truth. I feel a sense of responsibility to the people that have seen my posts on social media or read my book. I’ve told everyone for so long that they can lead a full and happy life despite mental illness, that I’ve forgotten to practice what I preach. At this point, I’m merely existing, not living.

I need to make a change, and I need to do it quickly. I turned 44 last month. It’s time to put my big girl pants on and get back in the game. If it means some kind of therapy, perhaps I just have to accept that. As much as I hate the idea, maybe it would be the best thing for me. I’m stuck, that’s for sure, and the old me didn’t leave any bread crumbs leading back to who I once was.

So, here I am having to contend with not just your run of the mill depression and anxiety, but agoraphobia and social anxiety coupled with a deep seeded hatred of my appearance and very low self-esteem. It almost feels too heavy to ever come out from underneath. My brain tells me that it’s just too much, I can’t do it. My heart tells me that in 20 years I’m going to look back and wish I had done more while I could. I can’t live with that kind of regret; I already carry so much as it is.

I feel like I’m finally at the point where I can make a declaration. I am finally going to start living my life again. I’ll keep working with my doctor to find a depression medication that works, but in the meantime, I’ll be working on myself. Maybe I’ll do online therapy, just until I’m ready to get back in the saddle. Every day, my mantra will be “just do a little more today than you did yesterday.”

If you’re struggling with similar issues, reach out to me! Maybe we can help push each other to make positive changes. It just takes a moment in time to change your life. You just have to be prepared to accept whatever those changes may bring. I think I’m ready. Are you?

It’s Not Your Journey

Living Resiliently Blog

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“It’s Not Your Journey” chronicles a 2 year period the where, author, Rebecca Lombardo, discusses her bouts with bipolar disorder, depression, anxiety, self-injury, and recovery from a suicide attempt, while overcoming the loss of her brother and mother. Mrs. Lombardo’s book sheds light on what living with mental illness actually looks like in contrast to the negative depictions seen on mass media. And while yes, there are descriptions on the symptoms of mental health disorders, like for example, depression (e.g.  anger or irritability, concentration programs, feelings of helplessness and hopelessness), through her experiences you “see” what that looks like day to day.

61ld0cuxl-_ux250_ Author Rebecca Lombardo

Her novel provides, in addition, encouragement to her readers keep on pursing their dreams and goals despite living with mental illness. I, myself, who struggle with mental illness have been inspired to stay strong and be best self, no matter what situation or person is…

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