I Just Know That I Am Not Okay

Every now and then I feel so alone I can honestly feel my heart breaking.

My throat starts to ache and tears well in my eyes and I feel empty inside.

I know that I am not alone. I have family and friends, and I am thankful for that. I don’t always feel it.

There are moments, like this one, where I don’t feel like I have family or friends. They might be there but they aren’t really there. Not really. They have their own lives and their own issues that they have to deal with. That’s just the way it goes. I get that. Life can be crazy and people can’t always be there when you need them.

I hope that I matter but I’m not sure that I do. In a more lucid moment I would say that’s the trauma from my childhood but this isn’t a lucid moment. This is a moment of darkness where I feel alone.

I feel totally alone. There is no one I can turn to and have them there. Right there. In that moment. When I need them.

I don’t know why someone can’t be there. I don’t know if they want to or not. I don’t know if they even try. I’m not them, so I don’t know.

I just know that I am not okay and it sucks to be alone.

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Change: Those Who Do and Those Who Don’t

Why do I keep trying? Time after time, year after year, I keep trying. Why? What for? What am I really getting out of it? Anything? Change is hard. Really, really, really, super hard. It’s almost near impossible at times. And despite how hard it is to change, I still try. Why? This got me thinking about why I keep trying for something that is so hard and has no guarantee of success. It also got me thinking about why some people don’t change, or even try.

I can only speculate why others don’t change, or try. So speaking for myself, the simplest answer I can give as to why I keep trying to change myself is, I am not okay with the alternative.

The alternative, if I don’t make changes and everything stays the same, means I stay miserable and in pain and in some very dark places. It means having dark, disordered thoughts. It means having my emotions overwhelm me. It means having no energy and no motivation. It means feeling alone and terrified. It means feeling trapped and paralyzed. It means keeping toxic people in my life. It means hating myself. It means being completely closed off from everything. And it means sometimes wanting to take my own life.

And for me, that is not okay. Frankly, it’s unacceptable. I don’t want any part of that. It’s an awful place to be and an awful feeling to have. It’s barely an existence let alone a life, and I want more. I want better. I want to be okay. And unfortunately, the only way to get there is to change.

It’s not always a noble cause. Sometimes I try to change because I think it’s what I should do. Sometimes I try to change because I think it’s what others want. Sometimes I even try to change because I just don’t know what else to do. Mostly though, I do it for me, because like I said, the alternative, to me, is much, much worse than what goes into changing.

Change isn’t for everybody. Some people are so afraid of it that they don’t even consider it. It’s just too much. I can appreciate that fear. Change can mean losing your home, your family, your friends, and everything you’ve known. How can that not scare a person? We’re often blindsided by big changes that we have no control over, and they can be overwhelming and painful. Real change is super hard. Especially when it involves thoughts and behaviours that are so ingrained in us they feel as though they are permanent. It takes loads of time and a lot of effort to change.

Which leads me to why I think some people don’t change. Or try. They just live in their darkness and struggle trying to make it through the day. They live with their disordered thinking and false beliefs without trying to learn their truth. And I have to admit, this baffles me. Why would people want to live like this? Why would anyone want to stay like this? Why wouldn’t people want to change? Why would anyone want to stay in such a miserable, awful, painful place of mental illness? It doesn’t make sense to me.

And therein lies the first problem to this judgmental thinking. Trying to make sense of it. Trying to apply any logic to ourselves, our thoughts, our emotions, or our behaviours, especially when they are disordered and dysfunctional, can be a frustrating and fruitless endeavour, and it may or may not help. The second problem is, just because someone lives day-to-day just trying to make it through, doesn’t mean they want to live like this. And the last problem is, a lot of people do want to change, but it’s scary and hard to change, and that can definitely be enough to stay our hand.

The days when I find change is just as hard as you think it is, and efforts that I have made to change are playing hide and seek with me, I am reminded of why someone might not want to change. When I think of the resistance, and in some cases the avoidance, of wanting to change, I think of my mom. The queen of no change. As far as I’m concerned anyway.

She not only didn’t try to change, she never gave an inkling of indication that she ever wanted to. Here’s where a lot of my judgment comes in. Because I believe she had to know things weren’t right. She was smarter than she gave herself credit for, she had to feel that something wasn’t right. Why on earth would she want to stay in her mind as it is? Swarming with low self-esteem, horrific lies about her worth, and trauma that she never was able to process, and she chooses to stay there? Why?

These are all assumptions on my part. Only my mom knows what she knows. Maybe she did know she could change, maybe she didn’t. Maybe she was too afraid of it, or maybe she felt she didn’t deserve it. I can certainly relate to either of those beliefs.

In my moments of compassion, empathy and understanding I am able to realize that change is terrifying and change is hard and no matter what some might say, wanting to change is not enough. Efforts to change can go on for years and even then there is no guarantee that things will get better. Change can mean digging very deep into memories and emotions that can be extremely painful.

Digging deep can mean seeing things in a harsh perspective that we might not be ready for or want to see. There may be some truths that we don’t want to know. There may be some lies we that don’t want to challenge. Digging deep can change how we see people and question our relationship with them. Digging deep can even change how we see ourselves. And this can mean making changes to our life that scare us and we might not be ready for it because it may mean leaving someone or removing them from our life, and this can be very hard. It can even feel like we can’t. We may not even be sure if we want to. It’s a tough situation. And to everyone it’s personal.

Despite how awful and painful mental illness can be it’s familiar. And we take comfort in the familiar. We like routine even if the routine is hurting us. It’s just something we do. You can try to pick apart why but I don’t recommend it.

For some people change is just not in the cards. For some, they will choose willingly not to change. They just don’t, or won’t, want to go there. It’s just too scary. For some, they may want to change, badly, but the fear is just too great. For some, change is the only way, no matter how much it may hurt.

I try to remember that change isn’t for everybody and what someone else is willing to face is really up to them. For me I keep trying and hope like hell it happens. To be honest, I have come a long way from where I was, and some things have changed so it makes me want to keep trying and keep changing. It tells me that more change, and for the better, is possible.

I’ll be honest, I’m not sure I’ll ever understand why some people don’t even try to make things better. I guess that’s not really my call. I can only take care of me and hope for the best even if it means making changes that hurt. And I will try to keep having patience and understanding for those who don’t, or won’t, and hope for the best for them as well. It’s really all I can do.

A Meds Dilemma

One of the meds I just started a few weeks ago is really helping to bring my mood back up. Not in a dazzling, ray of sunshine, bring on the day kind of way, more like okay maybe today won’t completely suck kind of way. I’ve taken it in the past and it was helpful to me then as well. So I know my track record with this med is relatively successful. And by successful I mean it doesn’t give me suicidal thoughts or tendencies, I usually don’t have any headaches or stomach issues as side effects, and it actually does more good than harm.

The problem is, it does affect my anxiety. A lot. It raises the baseline of my anxiety to a high moderate level so that I’m constantly feeling pretty anxious, and feeling a bit on the edge. Not a jittery, pace the room kind of anxious. More like a can’t relax enough to relax kind of anxious. As tense as my neck and shoulders are normally, they are even more so with this med.

And my susceptibility to panic attack increases. Whereas before I may have had a shot at managing the anxiety before it becomes a panic attack, now I’m lucky enough if I get a warning with enough time to intervene before the panic attack hits. If I’m already in the panic attack, it lasts longer and feels way more intense.

Just yesterday I had high anxiety for most of the morning, and it crept higher and higher until an hour or so later I had a panic attack, having to abandon my lunch and make my way home. And it lasted all the way home. It was awful. And it is the third panic attack in just the last several days.

Lately I’ve been better able to cope ahead and manage my anxiety to a level that allowed me to get some things done and go out every now and then. Of course, my mood was low enough that getting things done was low on the list of things to do, and going out was even lower but when I would the anxiety was mostly manageable.

Enter my dilemma. Do I continue to take the med so that I can continue to have an elevated mood, and just endure the anxiety as best as I can? Or do I stop the med altogether, significantly reducing my anxiety and bringing my mood back down?

It’s kind of a tough call. Because this anxiety is brutal. It is near constant and so intense it startles me. And then there’s the thing that the med actually does help me. As anyone struggling with illness and going through different treatments knows, the quest to find a med that works can be long and tiring, and can often lead nowhere. It is nice to want to get out of bed in the morning. Well, maybe want is a strong word. More like, I’ll get up and we’ll see how it goes. Which is more motivation than I’ve had in a while so…

My psychiatrist is thankfully working on this with me, letting me see if the benefit does outweigh the downside. She’s kindly offered to help me work on managing the anxiety so that I can continue on the med to see if the elevated mood is enough. Plus she was kind of enough to give me a script for an anti-anxiety med for when the panic attacks are really beating me down.

So is the anxiety worth the slight mood elevation that I get with this med? I mean if it gave me real pep and a get up and go kind of benefit that might be a little more persuasive in staying on it. I’d be much less depressed and maybe even productive. With this med, I’m not there so I’m not sure if it is worth it.

I’m thankful that I have a doctor willing to work with me on this instead of just writing off scripts and leaving it at that. Hopefully the anxiety can be contained and I can keep the elevated mood. We’ll see…

Getting a Mental Illness Diagnosis: Good or Bad?

Being diagnosed with an illness, mental or physical, can come with a whole host of thoughts and emotions. It can feel like your world is crashing down as you sort through what the diagnosis means, in terms of treatment and prognosis. Or it can feel like relief and understanding, explaining symptoms and behaviours, and now you can get down to business and get better. It can hurt or it can harm.

So getting diagnosed with a mental illness…is it a good thing or a bad thing?

On the good side, having a diagnosis can help in terms of knowing what treatment may be most effective. It can help your GP or your psychiatrist know what, if any, medications may help ease or reduce your symptoms. It can also help when finding support, whether in groups with facilitators or through social media. Finding those with similar experiences and the same diagnosis can go a long way to helping you feel like you are not alone and that what you’re experiencing is more common than you might think. Others who share the same diagnosis can also offer support, tips, advice and suggestions on treatments or medications that may have worked for them.

On the bad side, there can be a stigma that accompanies your diagnosis that can lead to misunderstanding, exclusion, miscommunication, and even being ostracized, including from health professionals. It can also be a trauma in and of itself as you try to navigate the waters of treatment and support, particularly when both are in short supply. Your diagnosis can even make you ineligible for treatment or social services among other things as most programs require certain criteria to be met. And it can leave you feeling boxed into a certain expectation of how others may expect you to think, feel, and act. This can be particularly hard when your symptoms are not “by the book”.

Let me think this out.

How effective is it to have a diagnosis? Is it mandatory? Should it be mandatory? Should it be on an ‘as needed’ basis? Does it help? Or does it make things worse? If a diagnosis is necessary then what if you are misdiagnosed? Or what if you are given no diagnosis at all? What if your symptoms are all over the place and don’t fit into any one category or disorder, does that mean you don’t get a diagnosis because you don’t ‘technically’ meet the criteria in the DSM? What if you only have six of the ten symptoms of a disorder, does that mean you aren’t still struggling with this particular disorder? Does that mean you shouldn’t be given any treatment for that disorder? What if your symptoms fluctuate enough that on any given day they can either be drastically increased or reduced, making a diagnosis applicable on one day but not on the next?

The fluidity and impermanence of our experiences and our symptoms means that a diagnosis should be just as fluid and impermanent. Our symptoms and our behaviours can ebb and flow. Some days we may have all of the symptoms and some days we have none. Some days we are several disorders and some days we are one disorder. Some days we may even have no disorder at all, though I imagine those days are extremely rare for the vast majority of us.

We can go months, even years, without exhibiting most symptoms with maybe one or two floating around us most of the time. We can have all the symptoms bombard us every day, all day for months or years on end. Or we could just be all over the place with our symptoms, which most of us experience.

If our symptoms and disorder are not all up in our face all day, every day, does that mean we aren’t struggling or suffering? Do we have to be struggling every single moment of every single day in order to retain a diagnosis? What if we can’t? Does that take away the diagnosis? If we are able to work and interact with friends more often than not, does that mean our struggles and suffering at home at night alone are any less hard or debilitating? And we are a diagnosis by night and not by day?

I can appreciate that having a diagnosis can be very helpful to a professional, as this is often used as the starting point of what happens next, and where to send the patient next or what treatment to give them. However, I feel that this may be a little overestimation by professionals, and here’s why…

1. A diagnosis is only as effective as it can be applied to the patient. If the patient doesn’t exhibit all of the symptoms or even half of the symptoms of a suspected disorder then the patient may be dismissed for that particular diagnosis or even misdiagnosed altogether, hindering understanding and treatment.

2. Diagnosing a patient only on presenting symptoms at the time may exclude considering other disorders the patient could be struggling with simply because a specific symptom is not present in that moment.

Any illness, whether mental or physical, is not always a textbook case. In fact, I would venture to say that most illnesses rarely present as a textbook case. And it doesn’t mean that whatever is in front of you is all it will ever be. Illnesses are very fluid in how they can present. They are subject to a number of factors that can contribute to its severity, fluctuation, and length. Things can often change at the drop of a hat, and this is something a lot of professionals fail to take into account.

I think that there should be a slightly broader approach taken when discussing symptoms and their severity. Even taking a month or two of experience into consideration when asking the patient questions can go a long way to getting a better idea of what the patient is experiencing than going by a week or two. Or going by what symptoms are happening today.

3. A diagnosis should be treated as more of a guideline than a prognosis written in cement.

Illnesses are very fluid. They very rarely stay in one state for an extended period of time. Medical and mental health professionals have been trained to go by the book and anything that goes against the book is treated as either not applicable or a cue to consider a whole new diagnosis altogether. If it isn’t written in the textbook, I’m looking at you DSM, then it isn’t so.

This is hard not to hold against the professionals because this stuffs our illnesses, disorders, and issues, into very rigid, inflexible categories that may or may not always apply, and may even lead to more damage than help. To give the professionals some credit, they have to start somewhere. I just don’t think that’s where it should also end.

When I was hospitalized late last summer, I spent six weeks on the ward, and during that time I was given my BPD diagnosis. For me, at first, I was scared as hell. In part, because I knew very little about BPD and what little I did know was scary and unsettling. I found out that I was very misinformed and the stigma of it preceded me finally coming to an understanding of what BPD really was.

When I started to educate myself, with the help of my psychiatrist, I started to feel relieved; the symptoms, the urges, the actions, the behaviours, the history, all associated with BPD, finally started to shed some light on who I was and why I behaved, felt and thought the way I did. It was like having pieces of the puzzle start to fit and show me the big picture. I felt truly excited that I finally had a diagnosis that made sense and that fit.

But with the diagnosis, the understanding, and the relief, came great fear. Fear that the behaviours and symptoms that I didn’t exhibit meant that maybe I really didn’t have BPD. I had been diagnosed before, feeling understood and relieved, and it hadn’t stuck. Diagnoses that before had made sense at the start and then slowly fell apart because other stuff under the disorder didn’t add up, and so the bottom fell out and so did the diagnosis.

Then there was the stigma that came with BPD. The limited, misunderstood and vilified diagnosis of BPD that so many have come to take as gospel, including the medical and mental health profession. Those suffering with BPD were supposedly “too emotional”, “too needy”, “manipulative”, “too sensitive”, “too moody”, “unpredictable”, “irrational”, and emotionally unstable. Leading many to even give another name to the disorder, “Emotionally Unstable Personality Disorder”. A moniker which I personally take offence to as the disorder is a lot more than just having dysregulated emotions, and right away gives others an inaccurate picture of the situation. It is often assumed that Borderliners are notoriously difficult to treat and are frequently unable to obtain and hold professional help due to this “neediness” and their frequent suicide ideation.

I hadn’t even told anyone outside of my husband about my BPD diagnosis and I already felt excluded, misunderstood and ostracized. I already felt like a lost cause and I had only been diagnosed that week. I felt awful. I thought I was a lost cause. I was terrified that even my psychiatrist who had been the one to approach the BPD diagnosis in the first place would surely throw me to the curb now instead of enduring what would apparently be a long, trying road for her to try and treat me. Would she think that I was a lost cause too? Would she be put off by my disordered thoughts and emotions enough to not even want to try and help me? Would she feel exasperated if my thoughts turned suicidal and send me packing?

I was conflicted. On the one hand, I finally had a diagnosis that made more and more sense to me the more I learned about it. But on the other hand, I had a diagnosis that meant I might not be treatable. And not because BPD can’t be treated, but because a lot of professionals won’t treat BPD. I would apparently be a waste of time and resources that would be more effective on others with a more “favourable” diagnosis. What a more favourable diagnosis would even be I don’t know because I think any mental illness has its challenges when it comes to treatment.

Suddenly I was sad because I was confronted with a diagnosis that now felt like it defined me. It felt like my name melted away and was replaced by my disorder. I became a disorder to be treated, if my psychiatrist was up to it, and my behaviours and actions were now tainted by the symptom checklist. It was hard not to suddenly question everything. It was hard not to feel lost.

Was that action because of the disorder? Was that thought because of the disorder? What was me and what was the disorder? Were they separate? At what point was I influenced by my disorder? Where did my disorder end and I begin? What comes with getting a diagnosis? Fear, sadness, uncertainty, isolation, questions, relief, and hope, that’s what comes with getting a diagnosis.

When it comes to mental illness, a diagnosis can be the best thing that happens to you or it can be the worst thing that happens to you. It can even be both. It all depends on where you are and what’s going on for you at the time.

Overall, I think a diagnosis can be more helpful than hurtful because at the very least it can be a starting point. But I also think it needs to happen with the understanding, between the patient and their doctor, that there is more than just the textbook classification of the disorder. And to keep an open mind, that symptoms and illnesses are subject to change. That we are more than a diagnosis, and should be treated as such.

The Neverending Quest to Know Why

A question I often ask is, “why?” I want to know why I do things a certain way. I want to know why I feel a certain way. I believe if I know why then I can fix it. I believe that “why” is the key.

At least that’s what I used to believe.

I have discovered over the years that knowing why sometimes means squat. Sometimes knowing why doesn’t change a single thing. This has been hard for me to accept because if knowing why doesn’t help me, then what will?

There have been times where I’ve discovered why I reacted a certain way or behave a certain way and then…nothing. All it did was tell me why. Which isn’t a bad thing to know. It just doesn’t necessarily solve anything. I was surprised, and a little disappointed, that knowing why doesn’t mean the issue is solved. It seemed like a logical pathway to me, figure out why something is broken and then you can know how to fix it.

Some of this time I have spent in denial, that maybe I didn’t know the whole reason why and therefore I couldn’t fix it so I figured I just needed to keep searching for the why. It’s also possible that I also used it as a defence mechanism so that I wouldn’t have to look deeper. I know I definitely used it to procrastinate doing the hard work that recovery and healing requires.

The reasons I behave the way I do, or respond the way I do, are complex. If reason comes in to this at all, then it stands to reason that solving them would be just as complex. Which means knowing why may never be answered and if it is it might not solve anything anyway.

I actually have to hold myself back from asking why this happens as well. It’s tempting to get lost in the mystery of why. Why do I feel this? Why do I do that? Why do I see things this way? Why do I respond that way? Why? Why? Why? I’m not sure I’ll ever stop searching for the answer to my whys.

I just hope I remember that not finding the answer to why doesn’t really mean anything. I may know why, I may not, and that may help me, and it may not.

Me and Love

So I learned something new about myself yesterday, I have an aversion to the word “love”.

It was the last few minutes of my appointment with my psychiatrist, and she was talking about love, and I stuck out my tongue and made that fart/splat sound to the reference she made. She asked me, as she usually does when I respond like that, what was making me respond that way. And I said the whole “love” thing, I’m just not sure about that.

I thought nothing of it. I already sort of knew I wasn’t a fan of sappy love crap. Like, whatever. My psychiatrist however, was new to this information about me, and asked why I might have a problem with “love”. I shrugged in response because I didn’t think it was a big deal. And I said as much.

Except I started thinking about love, and making random comments about love and how I felt about it, as she quietly listened and waited. And sure enough, it dawned me, I did have a problem with love. A big one.

This is one of the best things about treatment, those moments that just happen by accident. Some of the best insights can happen this way. And this one was no exception. Not only did I have a problem with love, I had a problem with the word too.

I thought of the last appointment I had with her and when I went to Chapters bookstore afterwards, I was looking for a journal, and a number of them and the word “love” on the cover, or love quotes, and I picked them off one-by-one, making faces at them, scowling at them, making the fart/splat sound, rolling my eyes and even getting irritated to the point of thinking, ‘my god does love have to be everywhere?

Well, son of a bitch. I really did have a problem with love.

What is that about?

Unfortunately, it was literally the last three minutes of my appointment so we weren’t able to further discuss it. She asked me to think about it for the next appointment and journal about it to explore what might be going on there. I’m kind of glad it happened this way because I’m actually curious now, and I’d like to think about it on my own. I appreciate my psychiatrists input for sure, but I wanted to see what I came up with first. What is my aversion to love about?

I’ve been thinking about it ever since my appointment. So far I’ve only noticed that I’m not a fan of thinking about it either. I’m guessing that’s because there’s some big stuff behind it that I’m probably afraid to deal with. Not much surprise there.

So the inquiry into my love aversion begins…

Dark Thoughts

Sometimes I have very dark thoughts. I don’t know how to explain them and out of sheer embarrassment I won’t go into details of them here. All I will say is that they are dark and they are scary.

I don’t know what makes them happen so I don’t know how to stop them or cope with them once they are there.

I worry about them and what they may become. I don’t dare talk about them for fear that I will be seen as a freak. Or worse.

I don’t know if they happen because of the BPD or if they are from depression or maybe I’m just so disordered that all my thoughts are just naturally messed up.

I am glad that they don’t happen often, and when they do they don’t last long. For the time they are here though, they terrify me.

My only wish is that if they are going to stick around, they never become more than a thought.

I hate them. I fear them. I pray they never become more.