One of those nights, again

It’s one of those nights

Where I hide away in my room to sleep

Where the tears just soak my pillows as I lay down

It’s one of those nights

Where I hate the headache more than ever

Where I’m so tired that not only does the pain never go away, it’s been 3 days of extreme pain and straight up migraines

It’s one of those nights

Where song lyrics hit me hard in the heart

Where I think and I cry and I think

It’s one of those nights

Where I just want the thoughts to stop

Where I just want the pain to go away

Where I just feel so hopeless

Again

(Heh…if I was in a different mood, this could’ve felt poetic)

The shadow behind

Neurologist appointments always got me feeling depressed after. Not from the appointment itself, but the mental preparation and emotional baggage it entails. In the office, and when I tell my family about how it went, things are stated just as is…facts. To evaluate it like an outsider, to think about options and treatments, to be wholly objective. But once I’m in my room, the floodgate of tears open and I can’t help but think how taxing it is to put all the physical and emotional pain from the headache into words and numbers. I can’t help but think about how you just can’t translate into words and numbers the feeling of being in constant pain for the last 5 (reaching 6) years. And the feeling that yes, I have come to accept the fact that the pain may never go away…but the meaning of that acceptance doesn’t necessarily mean that I’m okay with it. And all the talk about more options and treatments? But when they don’t work…how do I deal with the disappointment that you can’t help but build as you wish your hardest for some….for any relief. So there goes yet another night of crying myself to sleep.

Then I can’t help but think…rather than living a long lengthy life and dying old after decades of being in constant pain, what I would give to die young (if life allows), yet still have a fulfilling life. And I guess that thought has always been there for me. I might be so impulsive at times, wanting to do everything that I can once its possible instead of waiting, because I don’t know if the opportunity will come again. And thinking that life is going to be short, I think will make me try to live it to the fullest even more. Cuz who knows? The headache might even get worse as I get older and make it even more difficult to accomplish the things that I want to do.

So I’m going to allow myself to be a lil more reckless, be a lil more impulsive, and be a lil more adventurous. I’ll keep pushing the boundaries my headache’s locked in for me, and step over the comfort zone. And so a week-long trip to Taiwan is being planned, another tattoo is being scheduled, and I just might sign up for a class at a gym to stay accountable to working exercising into my routine. Just like how I don’t want people to view my headache as a disability, I want to do everything that I can when the sun is at its highest point and the shadow of my headache is barely there. All the small victories count in this endless battle against the headache.

I’ve always been scared of the dark, and shadows are hardly any different. The darkness, the unknown. Even if the object itself is not scary, shadows just feel like there’s so much that could be there. There are so many what-ifs. There are things that we want to avoid, but they follow us like shadows. But, no matter how large the shadow is, or how large the obstacle that makes it, the shadow is proof that there is a light somewhere. A light that is beyond the limitations of the obstacle/shadow.

If you know me you know I got nothing to lose
It’s do or die but this time I’m gonna do
If you know me you know I got nothing to lose

Wake up the statues
Breathe out the dust
Shock of a heartbeat
Rush of the blood
Breaking in to my skin
Feel the burning again
I can’t escape it
It’s time to
Rise up from the shadows

– Shadows – The Afters –

Happy 5 years.

24/7/365 with a headache that came and just never went away since. [7/17/2013]

5 insanely long years, longer than it took me to become a pharmacist. 5 years where I lost pretty much all the people around me. 5 years where my headache became the only thing I had to remind me every second that I was as alive as I was in pain. 5 years where it would hold me back, lock me down, again and again from the things I wanted to do. 5 years where everything that I did do took an extra effort to do, enduring the unforgiving pain in the background.

I just hate the headache so much. I hate how much harder it makes life. I hate how hard I have to try to function like any other person. I hate how just going out is a full on battle, preparing and fearing for triggers that would make my headache go crazy. I hate how my mind is not like it was before, unable to think or remember things with the headache clouding my mind. I hate that I have to revolve my life around the headache with a list of things to do and things to avoid in hopes that it’ll be bearable for the day. And most of all, I hate how my biggest wish in life right now is just to live 1 day without pain, a feeling long forgotten.

It sucks having to live like this, not knowing if it’ll ever get better, if I’ll ever get some relief. It sucks that after the neurologist appointment, I didn’t even waver before running headfirst going cold turkey, no meds (since it’s difficult to differentiate between a medication overuse 24h headache vs a chronic migraine 24h headache) because I’m just that desperate hoping for a solution. And since life can’t get any worse right now, and everything else is on hold anyways, here I am. It’s been 10 days so far, and the headache is still there, still going crazy at times – so chronic migraine it probably is. Now, just onto the next hurdle lol.

At this point, I just don’t know… I don’t know what to do about my career on hold – can I even practice with this unpredictable headache? I don’t know what to do about my nonexistent social life – when I can’t keep promises or get out of the house because of bad headache days. I don’t know how to face my family – when I want to help them but I can’t even take care of myself. I don’t know if I want to try yet another medication and risk experiencing side effects like the many times before. I just don’t know how many more disappointments and difficulties I can take before it’s too much. I just don’t know if and how much longer I can coexist with this headache.

But I’m learning. Learning that it’s okay to not know. Learning that struggling through this doesn’t mean I’m weak. Learning that it’s okay to keep hoping, as long as that little spark can keep me alive. Learning that I may be living differently from everyone else, but that doesn’t mean I can’t live. Learning that even if I can’t change or get rid of this headache, I can still live a life that I can look back on with a smile.

An empty shell

This past month (more than a month, actually) has flown by without a trace. It’s like I’ve just been a rock in hibernation. And existing itself was a daily struggle. I was on sick leave from work, had an extended probation for a “demotion” because of my “lack of connection as a introvert” aka lack of customer survey comments, and my headaches. I personally dislike asking people to do the customer survey because it might make me seem like I think I did them a great service, because I wanted something in return. And it’s not like I tell them about the times people have thanked me or those who took care to note my name after I helped them, because that’s just not who I am. Yet I guess to be judged, the numbers matter at the end of the day. I’m just not a fit to be a salesperson either. And the risk of my “sick days” of headaches, when I had more sick days because of actually being sick… well, a business is a business, even in healthcare. And then the sick leave happened, and is deduced to be a physical reaction to stress/anxiety. So with all that, the life just got sucked out of me. And before I knew it, the wish to die became so strong that it was a battle everyday to do the basic necessities of living. Reading about others’ stories of suicide made me jealous, that they were able to escape. But I couldn’t. I felt so guilty to my family who does everything for me to keep me alive, literally. I wanted to relieve them of the burden for caring for a lifeless corpse, but I didn’t want punish them with the pain. And I was so void of emotions that I’d want to burst into a waterfall of tears, but it’d be dry like a desert. I’d yo-yo between sleeping too much, and not being able to sleep. I’d watch dramas and shows all day to distract myself, escape from reality. Then of course I’ll think about how I’m just wasting away and feel guilty and all those gravitational thoughts of depression. I’d want to get better, then the will just fades into darkness again just thinking about how many more days, months, years I’d have to deal with life and my headaches on the side. And it hasn’t even been 5 years (just a few more weeks to reach that anniversary). How am I going to survive and stay sane living 10, 20 years with my 24/7/365 headache. I really don’t know.

Honestly, this post took forever to write as I’d keep procrastinating, continuing my lifeless days. It was only this week when I was able to actually have the energy to reply to texts, and want to write this out. I have no idea what to do or how to fix my life. Like I just see a dull light behind my walls. There might not be a door yet, and it’ll take all that’s within me to unlock the door, much less open it. For now, I’ll just wait for the neurologist appointment and once again throw that line of hope. To crawl towards the light no matter how dim it is and reach out. Because ambition is in my shadow, greedy for a better life even if it may end up catching yet another disappointment.

If people would stop asking…

Every time I have to talk and explain to people (especially the SAME people) what my headaches are like, it not only is annoying, but it hurts too. Just because they don’t know what it’s like, they easily forget what I say about it. Because they can’t “understand” me? Because they don’t care enough to listen when I tell them? Because I don’t show my pain on the outside?

I have a freaking headache that never went away since July 17, 2013. The neurologist has diagnosed it as New Daily Persistent Headache. I don’t even want to tell people about it, in case it changes their perception of me. But then I have to make excuses when it acts up. In school, I use Access and Diversity to communicate with profs so that I don’t have to elaborate and everything. They might not even “believe” my condition. So what does it feel like? I wish I could just copy and paste this on my forehead or something. My headaches are normally at a 2-3/10 for pain every second of the day like a tension-type headache. Then, there are times when the pain gets worse and it becomes like a  migraine in nature with pain that goes up to 10/10 and I even get lightheaded from it. I don’t get nauseous or vomit, but I would be unable to think, unable to do anything, unable to sleep even. And with school and work, I try so hard to get through the pain and endure it so that people won’t look at me like a patient. I want to finish school and become a pharmacist like any normal person can. I don’t want to be looked down upon because I suffer from chronic pain. But at the same time, I wish I could be understood when the pain gets too much for me. Because I can’t help it. There have been so many times when I just want to bash my head against the wall and rip my head open. Medications don’t work, or they have side effects that are even worse than the pain itself, not letting me function. So I endure it. I just hope that one day, no matter how long in the future. One day, I can have freedom from the pain. To have no headache, I don’t even remember what that is like anymore. It’s like someone’s put a steel lock on my head that the key cannot be found for.

Talking to my mentor, she thinks that surviving the headache and migraines and being able to live like I do is because I’m strong. I’m not. Ever since I was in elementary school and got headaches after playing outside in the sun, I would call my mom to take me home. It happened often. And now, I would skip class and go home. I would cancel appointments and commitments. I wouldn’t want to go out with friends nor care about them. It’s like a jail for me. It makes me give in and sucks all the energy in me. It stops me from so many things: studying, spending time with people I care about, enjoying things, just living a normal life.

My parents always asks me about my headache. It’s like…what do you want me to say? The whole spiel over and over again? Yes. I have a headache. I will never NOT have a headache. It hurts, leave me alone. But because I don’t want them to worry, I don’t keep complaining about it. It doesn’t mean that it’s not there. Like a shadow, it’s always there. I try so so so hard to live a normal life. I went out with my family this weekend and spent more time out of my room with them. My head gave me unbearable migraines, but I held it out. Even when they took a long time at the loud restaurant when I had already finished eating and was just waiting for them. Even when they wanted to go places after places after places. Because I wanted to be able to show them that I love my family. That I don’t isolate myself from them because of them. But because the pain locks me in and I just can’t do anything else. I collapsed after the outings, but I think it was worth it. To just spend time with them is precious. So I hope that they can one day understand me. That they can understand my effort and suffering. Because I don’t think I can hold it out for too long. It’s much too draining. I’m tired. My mind, my body, is tired of this headache. But I’ll keep trying, because some little part of me holds on to the belief that it’ll get better, and that I CAN live through this, no matter what this “normal life” for me becomes.