I will hold on hope.

I realize something that maybe I’ve been avoiding for a while – my positive outlook on life has changed dramatically in the past few months, it’s been swallowed up by depression and hopelessness. I’ve ceased to participate in my life. When did that happen? I think it’s been a slow progression. I don’t have good days and bad days really, there are the highs and lows but mostly it’s just emptiness, eternal boredom, nothingness, accompanied by never ending physical pain.

What a waste of a life. That’s not what I want my existence to amount to – having my spirit broken by my worst enemy; pain. How did I let myself become this shell of a person? I’ve stopped being excited about things, stopped setting goals and having hopes. When I get an email from someone in pain or with an illness, asking me how I stay positive, I feel like a fraud – how can I give advice to other people that I can’t seem to follow on my own? I think I’ve started using my illness as an excuse, and it is, for a lot of things, but it doesn’t mean that I can’t try, and it doesn’t mean that there’s no room for anything else, anything good, in my life too.

I’m afraid to fail, and, I’m afraid of discovering just what kinds of things my body prevents me from doing. But that’s what I’ve realized – my fears keep me from doing much more than my body or pain ever would. That’s not okay. So, I’m going to start correcting that little voice in my head that tells me that I can’t do things and that I shouldn’t even bother trying as soon as I hear it and replace it with one that tells me it’ll be worth it to try, no matter the outcome. My own form of cognitive behavioral therapy. It’s been so long since I’ve truly worked hard at something and felt the pride of achieving it. I need to remind myself what that feels like. 

I wanted this blog to be as honest as possible, but I also wanted it to be somewhat positive, maybe even inspiring. So, time to get at it!

Hope By Jan Tik

I will hold on hope, and I won’t let you choke,
On the noose around your neck.
I’ll find strength in pain,
And I will change my ways.
I’ll know my name as it’s called again.

Mumford and Sons – The Cave

Venom & Whiskey

I’d tell you that your crazy but, well, who am I to know?
You’ve been running ’round in places that the manics only go.
By 1:00am you’re wasted and by eight you’ve had your fun.
I wonder if it’s normal or if you’re the only one.

You’re talking to the devil while he plays you for a fool,
I wonder if you fake it, or if you really are this cruel.
Your eyes are getting heavy but you’re resigned to stay awake,
You test and test my limits, prodding how much can you take?

Just when I think you’re hopeless, a body without soul,
Your eyes come back to haunt me, while your lies, they take their toll.
Maybe I’ll pick up the bottle, right where you last left it,
And drink away my thoughts of you until I’ve forgotten every bit.

I’m learning all your rules now and I know just what they mean,
I’ll save my doubts for later, and hope that you come clean.
You’re in the other room now and you’re screaming your objection,
Angry that I have the venom to accuse you of deception.

The echoes in the hall, still linger the next morning.
You took your coat and headed out, but left me with a warning.
Square one again so I decide to sleep the fear away.
Knowing that I’ve trespassed, and that I’m going to pay.

©

Waiting for the will.

I’ve come to a bridge,
Now, it’s time to make a choice.
Not knowing whether it’s fear that stays me,
Or some inner voice.

Running out of excuses to turn back,
While waiting for the will to step forward.
I stand at this bridge,
And it’s time to make a choice.

©

The things that shape us.

I have a long doctor appointment today to be entirely focused on my pain and the management of it. I have some specific things that I need/want to talk to her about, but I’m afraid. I’ve always been frightened of and extremely uncomfortable with telling doctors the truth and being honest and vulnerable with how much pain I’m in and how it’s affecting my day to day life. I feel like a fraud and I’ve never understood the nagging voice that I have when it comes to my chronic pain, the one saying you’re a liar, you’re a fake. Is it denial? I don’t think so because I know that I’m in pain and I know that there are a thousand proven reasons for it. But I somehow feel like I need to be convincing, like I need to decide how I’m going to act beforehand so that my gp will believe me, when the reality is that I should only need to be truthful.

I think am fairly certain that the reason for this is the treatment that I received early on in my dealings with chronic pain. I was seen as someone who was either faking it or whose pain was entirely psychosomatic. I went to my multitude of pointless doctor referrals with my jaw clenched, knowing that I was about to walk into a room full of accusations and judgement, when what I desperately needed was understanding, acknowledgement and answers. For that period of time I was suffering and scared but I felt that – despite the obvious – I needed to prove that to everyone.

I feel like those experiences cemented my deep seated fear of not being believed and being judged. They may not sound traumatic now, but at the time they were devastating. Here I was, someone who not even a year ago was leading a perfectly normal life, but who was now in daily, excruciating, frightening pain that took away my friends, my school life, my sports and my normalcy. The people that should’ve been helping me, who should’ve been my advocates were the ones that tore me down and made me question what I knew in my heart was the truth. I learned then that when you’re told something often enough, that no matter what you know, you sometimes begin to believe it to be true.

I know that if I’m to be helped that I need to be honest and assertive. And for the most part I think that I’m slowly getting better. Sometimes it just depends on the day and my drive to fight in order to get the best treatment that I can at the time. I fought at my last appointment because the amount of pain that I was in left me no choice, I knew that I couldn’t walk out of that room and go back to things the way that they were.

I’m more prepared for this appointment. I’ve written down every bit of the daily pain that I experience, the lack of sleep, the difficulty in concentration and the low mood because of it all. Aside from the fact that I think it’s helpful for all of us to make lists to refer to while at the doctor, writing has also always been by far the most comfortable form of communication for me. I can say things in my writing that I could never say out loud and it gives me a voice that I never would’ve found otherwise. 

“Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.” – Joseph Addison