Clenching my fists.

Yesterday was a good day. I slept decently, vacuumed, went to the store and went visiting, all of which I did happily and in a minimal degree of pain. I sang, I danced around and I smiled. I think that the last time I had a day like that I was in my early teens.

Today however, is the polar opposite. I am nearing my threshold for pain tolerance, edging closer and closer to the breaking point. I think that I have multiple subluxated ribs and can’t take a deep breath in or bend over. The pain that it’s causing is nearly jaw breaking and I’m finding no relief in anything that I try to ease it with. My spine is radiating searing pain down to the tips of my toes and my head is throbbing so badly that I can actually see my pulse in my eyes and hear my teeth knock together in tune with it. I don’t think that this is payment for yesterday – save for my back which is very likely worse because of the vacuuming. If it were though, I’d take it – as hard as that is to swallow in all of my current misery. I mean, when was the last time that I could pinpoint a specific date and say that was a good day. This rough day however, will eventually pass and fade into a background littered with similar days. Only this time I will have the memory of yesterday to tide me over.

I desperately need support right now but I’m extremely snappy and irritable so instead I’ve been isolating myself to keep from hurting anyone that I care about with my anger. It’s nobody’s fault and I know that. It’s just one of those day where you feel like a fizzy drink that’s been shaken up – you need to blow the lid off and let some of the pressure out. You think that taking out all of your pain on someone might make you feel better – but I know that it never does. For now I’m holed up in my room, gritting my teeth and clenching my fists, just waiting for some kind of relief to find me.

“And when at last you find someone to whom you feel you can pour out your soul, you stop in shock at the words you utter — they are so rusty, so ugly, so meaningless and feeble from being kept in the small cramped dark inside you so long.” ― Sylvia Plath

Thank-Yous & Goodbyes.

First off I have been reading all of your wonderful comments and though I haven’t gotten around to writing back I just want to say thank you and I really, really do appreciate the kindness and support. I try to respond individually to every comment but sometimes it takes me a little while to get to them. I’m also a bit of a perfectionist; I try ridiculously hard to say the exact right thing when I do respond. I feel like I owe everyone at least that much in comparison to what you’ve all given me.

I’m super tired right now, I haven’t slept in the last 24 hours, though, I did sleep the entire day the day before that. I got my fist dose of how much the beta blockers really are going to slow me down in regards to exercise. If they keep it up I think that I’ll be trying a different one or switching to the calcium channel blockers. I rode my bike to the nearby grocery store – something that I can normally do in my sleep – because my parents were out of town with the car, I had to get off 3/4s of the way there and walk it! That’s how exhausted I was and it was so embarrassing. I was so exerted that I nearly threw up multiple times and my entire body was shaking so that I couldn’t properly deal with my money in any sort of timely fashion. Of course I also got the “would you like to donate so and so much $ to the children’s hospital” which I always try to say yes to but then I had to sign my name, which took me way longer than it should.

I had considered calling a taxi or a family member to take me home but my pride got in the way of that. I ended up walking my bike the entire way home aside from the downhill areas. I’m still surprised about just how extreme the change in my resistance was. When I checked my pulse it was only at 117 – which might not be good, those of us with MFS are not supposed to get our hr past 100 when on beta blockers, but I hadn’t planned to – the point being that before I had gone on them I would get my heart rate up to 180 before I felt that exhausted (with the questionable approval of my cardiologist). I also forgot my asthma inhaler which was insanely stupid. Beta blockers can make asthma worse, but so far mine seems to be mild enough to take it. I just hadn’t expected to be exerting myself hardly at all and so I hadn’t properly thought ahead.

I’m having a hard time seeing today. This happens occasionally and it’s hard to explain. My eyes just don’t seem to focus as well and everything seems a bit blurry. It’s especially noticeable when drawing or typing. I often wonder if it’s connected to my headaches at all. I’ve been trying to pay attention and see if it precedes a migraine. I’m going a tad stir crazy. I love having the freedom to drive myself around but it seems like there’s always something keeping me from being able to whether it be a headache, too much pain in general, no sleep or having taken my pain pills – I won’t drive in any of those circumstances because I don’t think that I can do it as safely. Now the days are getting shorter and I still don’t drive at night because of my eyes. I generally don’t mind being at home but I’m starting to get anxious to get out of the house.

My mood’s been low. My best friend since grade 8 moved away to go to college and the day after my parents left to go visit my brother so I was alone in the house with my thoughts. Watching the world spin without me is a bit depressing. I had also wanted to go visit my brother but felt too badly pain-wise to do so. As for my best friend leaving, I’ve been trying not to think about it but I’m going to miss her. I’ve never dealt with change well and she’s one of the only people in the world that didn’t desert me when the pain started and I had to leave school. I’m really, sincerely proud of her but if I’m being truly honest; I’m also jealous. And not the kind of I’m miserable so I want you to be too jealousy. Just the I wish that my life was more like your’s kind. Health really is wealth.

The truth is…

Would it truly be so horrible for me to have the diagnosis of borderline personality disorder? Can one not be a good person and have bpd? Sometimes I question it. So many people seem to want to “save” me from the diagnosis of it, to justify or explain away my borderline traits as if the label of bpd is such a terrible thing. And I know that their intentions are good, I don’t doubt that, but what it says to me every time is that it’s not alright to have bpd. In the end what it does is further enhance the shame and stigma already surrounding this disorder.

I often wonder if I made a mistake in blogging on here about my diagnosis and mental health. Generally what I write here was and is focused on my connective tissue disorder and chronic pain. My diagnosis of bpd came almost a year after I had started this blog and I thought about it for a few weeks before deciding that I would share it here. But, generally I don’t go into much detail about what exactly I struggle with in regards to my mental health or what exactly led me to seek help and end up with the diagnosis in the first place. I speak vaguely of it, but I haven’t even scratched the surface of my life with bpd on this blog. That’s because I don’t feel comfortable sharing such personal details of my life on here and because I’d rather keep the medical aspect of this blog focused on what it was meant to from the beginning; my physical health.

Hardly anyone in my personal life knows about my bpd. This is in large part because I’m often ashamed of it and also because when people find out they begin to ask questions, questions that I’m not comfortable answering. The only people that do know do only because I couldn’t hide my symptoms from them. They knew that something was wrong, and eventually it became so obvious that the only option that I had was to tell them the truth about it. When I chose to include this in my blog it was for two reasons. The first was in the hopes that other people in similar situations would reach out to me, and I wouldn’t feel so alone. The second was in order to help sort out my feelings about the diagnosis, and keep from coping through denial, replacing that with honesty and openness.

I will never make this a borderline blog. I will never be okay with writing out the day to day struggles of bpd and how unwell it makes me. If this were an anonymous blog then that would be different and I wouldn’t feel the need to be as guarded. Because of that this will also never be a portrait of life with bpd. If you expect to look through my blog and know what bpd looks and feels like then you will be consuming an inaccurate account of what to expect when it comes to borderline people. I don’t put out enough information on the disorder to be of educational use to anyone. That is why no one can read through my posts and accurately tell me that I don’t sound like I have bpd. If I described living with the disorder as I describe living with Marfan Syndrome that would be an entirely different thing.

What it comes down to is this: no one needs to pity me because of this diagnosis, and certainly no one needs to try and tell me that my circumstances and hardships excuse me from having bpd. I was struggling with major aspects of this disorder before I even knew what to call it, so for me the name really doesn’t matter. These things are all a part of what makes me me, both the good and the bad. I am a good person. I’m mature, sympathetic, strong and kind, and I also happen to have bpd, at least so I’m told by the “professionals”. Having this disorder does not make me a bad person. It doesn’t mean that I’m not capable of good things and it certainly doesn’t mean that I’m about to turn into Alex Forrest from Fatal Attraction at any minute. And maybe there will come a day when more is understood about mental health, and my symptoms fit into a different category, a day when I’m told that I in fact really don’t suffer from BPD. Like I said, the name really doesn’t matter, it’s the progress I make within myself in order to be better and overcome my demons that should be the focus. Which is something we all face anyways, “borderline” or not.

This is me. I’m not that “borderline girl” or that girl who has Marfan Syndrome. I’m me. The rest is just background noise, pieces of the puzzle. For now, I am someone who was diagnosed with borderline personality disorder. And I’m okay with that. It validates a war that I’ve been fighting against myself for many, many years. It tells me that I’m not alone with feelings that I thought no one else in this world would understand. For now, it gives me an answer that I desperately needed.

The Truth About Borderline

The truth about being borderline:

It hurts like hell.

It makes you hate things about yourself that you were hardly aware of to begin with.

It makes you angry at those who don’t deserve it.

It makes you constantly question your purpose and existence.

It often makes you wonder how much better off the world would be without you in it.

It makes you hurt yourself in any way possible, just to find some control, some escape.

It makes you turn into someone you hate, someone you’d do anything not to be.

It makes you afraid; of rejection, of yourself, of those moments when you decide you’d rather be gone than face the excruciating pain you know it’s going to inflict on you.

It makes your proper judgement disappear and tells you that whatever idiotic, impulsive, self destructive thing that you’re craving is the right thing to do, just give in to it.

It tells you that your worthless, that you’re nothing. A tiny spec of a pitiful existence in a world full of people better than you.

What is borderline to me? It’s a curse, it’s an evil, calling out to me every moment of the day, begging to be listened to, screaming out just how miserable I am, how I deserve nothing, how I am nothing.

Borderline is my day and my night, my darkest secret and my most obvious devastation.

It is me, and no matter how hard, how desperately I seek solace from it, it will always be there. Every time I turn around, every time I’m alone, every time I catch a glimpse of freedom or peace. It is always there, telling me I am nothing, telling me I’m not worth it, telling me that the world would be better off had I never entered it. And it makes me believe it. And sometimes I think that one day, it will claim my life entirely.

“Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

Never forgotten.

Miss you my old friend. I can’t remember a time before you were a part of our family.

Lost in my headphones.

You know those really annoying people that walk around with their ipod headphones on and blaring all of the time so that if you were to speak to them, there’d be no way that they’d hear you? Well, that’s me. Not all of the time and sometimes I will try to be aware of other people in case they are trying to talk to me but for the most part, I’m plugged into my music. And that’s the way that I like it. It allows me to completely block out the outside world and to just be in my own head and my own zone.

I also use the headphones to speak for me, say, if I’m seriously not in the mood for conversation – in the house, in a store and otherwise – I put them in, and loud, and hope that people will see that and refrain from attempting to make conversation. I don’t do so to purposely be rude, but sometimes I just get so lost in my own feelings and thoughts that the thought of interacting with people is just highly unwanted. Often times the action of going to a store is such a source of anxiety and displeasure, with which having to smile and chat instead of put myself on autopilot until I get the heck out of there is just so much worse. And, I’m usually in a hurry, A.) because I’m terribly impulsive with money, B.) like I said, stores make me uncomfortable, and C.) my brain is always so overloaded with pain that it’s so easy for me to forget or get confused and screw up whatever it was that I went shopping for in the first place.

For me, with my “brain fog” (this is the name they give to what happens to your brain when it’s always overloaded with pain signals), I’ve developed a routine for shopping. When I get out of the car I stop, make sure that I’ve locked it, make sure that I place the keys in my purse, make sure that I have my purse, all of this often repeated multiple times, just to make sure because I can’t trust my brain. Then as I go through the store, collecting the item(s) that I need I keep checking to make sure I haven’t put anything down and left it somewhere or that I’ve read the label on the item correctly so that I hopefully won’t have to come back and exchange it (even with the double and triple checking you’d be surprised how often this happens). Getting to the checkout is more of the same, make sure I grabbed every bag, triple check that I put my wallet back into my purse etc. By the time I get back out to the car my head is usually pounding worse and my back is killing me. Then I thoroughly make sure to put everything in the car, check to make sure I have my wallet again, and steady myself before driving.

Despite what you make think, aside from steadying my mood, having my music blaring during this entire process helps me focus and block out more external stimuli and interruptions. And since someone talking to me makes it impossible for me to think because I then have to concentrate so hard on what they’re saying, if the sight of my headphones deters any would be conversations than that’s a huge bonus. And don’t get me wrong, I’m not trying to be unfriendly, I’m just overloaded and on a mission and it’s not like if someone did try to talk to me I’d ignore them or be rude, because I won’t.

It’s kind of sad how much energy and prep goes into taking a trip to the store for me. My mom is the same way because of her pain. It’s just like Christine Miserandino’s “Spoon Theory” describes. Doing things when you have a chronic condition or illness of any kind takes so much more out of you then it ever would for other people. When you’re chronically ill you lose one of life’s best luxuries; the ability to just do, instead of think. Just do. have a shower without fearing one of my ribs will dislocate while I’m washing my hair, just give someone a hug without lecturing them on not squeezing me too hard first, run up the stairs without thinking about keeping my heart rate as low as possible, lift a bag without wondering if it’s under 20 pounds. I could continue on with this forever.

“…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.” The Spoon Theory by Christine Miserandino

To Feel, Alive

His sleeves, stained red, with self hatred and an endless need to punish himself,
Desperately searching, grasping, dying,
To feel, to feel, to feel alive.


He wears his scars for the world to see, why should he care?
They know nothing of his suffering. They know nothing of the lengths he must go,
To feel, to feel, to feel alive.


He remembers a time, smooth skin, still innocent of the trials of a tortured soul,
Innocent of a boy who doesn’t belong, who would do anything to find meaning,
And to feel, to feel, to feel alive.


To what end must he mar himself, when no matter how many drops of sorrow paint the floor,  
It is never enough to truly allow him his peace,
And to feel, to feel, to feel alive.

©

It’s been a while.

I am such a lax blogger! I’m efficient and posting on a regular basis for a short period of time and then bam, I let it slide again. To be honest it’s hard, when I’m going through harsh “borderline” spells, because a lot of my actions and emotions are not things that I’m comfortable blogging about on a public space that my family has access to and that my identity is known on. I know that I chose not to blog anonymously and it was largely in part because I wanted the people in my life to be able to better understand me and my day to day life with my disorder and chronic pain, if they so chose to.

That was before I got my mental health diagnosis. And while I still want to be able to share openly and honestly, and I wish for everyone to also understand borderline personality disorder and major depressive disorder, many of the things I struggle with because of those disorders are deeply personal. Don’t get me wrong, being able to share the way I have on my blog has been a hugely positive outlet in my life. I’ve gotten amazing feedback from not only people in similar situations but also from people thanking me and offering their support. Many of my family members are also able to better understand me because of this blog. Had I written anonymously I would’ve missed out on the face to face feedback from the people in my life reading what I have to say. Those are just some of the reasons that I choose to blog under my real name. 

It is odd to me that I can so easily share every aspect, every detail, of my tissue disorder, yet I find it so incredibly difficult to share even the milder issues I face with my BPD. I suspect that I can pin it down to the stigma that follows any disorder regarding mental health. So many people are so opinionated on “mental disorders”, most of whom have know idea how agonizing living with them can be. And, I wish I could say “to hell with them”  but I am not the type of person to be able to just let ignorance and unfair judgement roll off of my back. I fear what people would think if they knew how damaging BPD and depression has been and still is to me at times, the agony and suffering it so often causes, the scars that it has left, and the fear that it threatens me with again and again. I never know how far it will drag me down, or when I will feel okay again. I never know who it’ll make me hate or how it’ll make me think of myself. I am always on edge because of it, I never feel truly safe in my own body, not physically, and now not emotionally or mentally either. 

Yes, I try to be as honest as possible here. For outlet’s sake, and for the sake of other people who might be going through the same thing. But if I were blogging anonymously I would have the freedom to be unflinchingly and brutally honest, without fear it would come back to bite me.

Unwell

I’m in KL staying with my aunty. I won’t write too much about it right now but to say that I’m extremely home sick. Being away from the comforts of home has just reminded me of how unwell I am. Not physically per se but mentally.  There are so many horrid, intense feelings that I’m going through that I just don’t even understand. I feel unhinged. And it has nothing really to do with where I am, and it certainly has nothing to do with my aunty, who I adore. It’s more of a magnification of feelings that I spend my time numbing at home. It’s harder to do that when you’re out of your element, so you end up being forced to sort of deal with them for a bit. Things should start to get better the longer I’m here. At least I hope they will. 

Apologies, sort of.

Maybe I am sorry,
For all of the things that I said.
It’s been hard for me to think straight,
But the night does clear my head.

It’s different, being lonely,
It’s where I feel at home.
Sometimes your presence scares me,
Because I’ve spent so long alone.

I’d drag you through the kicking and screaming,
But I’ll always be the same.
Trying so hard to keep you out,
Because I’m the one to blame.

Maybe I’m not meant for this,
It’s always you that’s trying.
You could take my word, “I can change”,
But it’s my lies you’d be buying.

The best thing I’ll ever do for you;
Close the blinds and lock my door.
Maybe one day you’ll understand,
I just couldn’t hurt you anymore.

©

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