Coping with My Chronic Illnesses: A Pain-Filled World (02)

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“Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In the face of pain there are no heroes.” ― George Orwell, 1984.

I don’t recall ever being in this much pain before without respite. The pain started at the end of June and hasn’t gone away and it’s already nearing the end of July. Normally, there would be a day or two of pain respite, but that hasn’t happened since it started, which is driving me insane. This pain-filled world is what I think hell is like. I watched House M.D. about half a year ago when it was still on Netflix, and I identified a part of myself with Gregory House. Pain changes a person, especially when it’s always there and severely limits their ability to do something. It definitely can make them meaner. I don’t have enough energy to pretend that things are okay anymore. I can forget for a little while when I indulge in my hobbies or hang out with my SO or my friends, but the pain is always there at the back of my mind.

I can’t sleep well without medication anymore; otherwise, I’m waking up in the middle of the night due to pain. At least now I can sleep for several hours undisturbed by pain. I’m close to giving up and going to the emergency room due to the sheer amount of pain I’m in, but luckily, I managed to snag a doctor’s appointment at the neurologist on Monday, so hopefully that goes well! I just want the pain to stop. It’s consuming a lot of my thoughts lately even when I try to push them away.

On a happier note, for coping partly comes from finding good in tough situations, I’m blessed that my SO tries his best to make my life as comfortable as possible right now. I’d be lost without his support. The daily massages are a blessing and knowing that he has my back and is willing to see my illnesses through with me is a great comfort. I am cherished, and though my mind likes to play tricks and make me think otherwise, it always comes back to: “I am cherished.”

It’s a bitter pill to swallow that because of some of the things I was born with, I’m not healthy and am in pain sometimes because of it. Without these breakthrough gratitude moments, my life would be the hell my body wants it to be. However, fortunately enough for me, I am able to remember my blessings. I am able to remember God’s greatness and how despite the illnesses, I still have blessings in my life. I said my prayers today and remembered my place as a child of God and felt a little more hopeful that I may bear with all this pain as we figure out what exactly is going on. I have to keep the faith that we will be able to figure out what’s going on and figure out a way to help me with the pain.

Coping with My Chronic Illnesses: Some Thoughts (01)

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“Those great wars which the body wages with the mind a slave to it, in the solitude of the bedroom against the assault of fever or the oncome of melancholia, are neglected. Nor is the reason far to seek. To look these things squarely in the face would need the courage of a lion tamer; a robust philosophy; a reason rooted in the bowels of the earth.” – Virginia Woolf, On Being Ill.

There are some days that you feel ill from the very moment you wake up. Your body is waging a war with your mind. How can you face it? You know something is not right; you’re unhealthy. You’re not at the top shape you know you could be if your body and/or your mind wasn’t failing you. The constant onslaught of a chronic illness is enough to drive people crazy, and as Woolf puts it: “To look these things squarely in the face would need the courage of a lion tamer; a robust philosophy; a reason rooted in the bowels of the earth.” Finding that reason can be hard, but it’s achievable. And then it’s being gritty and persisting in the direction you want your life to continue going despite the uncertainty of how the illness affects you on the timeline it affects you.

I can only plan as appropriately as I can, even if it’s not that far in advance, but that’s okay. I’m going by my timeline because my timeline involves being chronically ill that has no pattern beyond being every day. The intensity of the illnesses aren’t always the same on a day to day basis, but even on the better days, dealing with the illnesses is still stressful.

Still, slowly, you must fight on through the chronic illness. It’s tempting to give up. There’s nothing sweeter than temptation. I want to give up a lot, but I can’t. I refuse to. Taking each day, sometimes each hour, one at a time and slowing down is what’s best for me. That’s all I can handle sometimes, and that’s alright. Sometimes I’m so hard on myself even when everyone is telling me to take it easy. Truly, sometimes, you are your worst critic. Practicing self-compassion is another strategy to help with this.

Sometimes, my mind is hazy in the morning. It feels like I can’t quite understand what’s going on and nothing registers in me because of it. This feeling doesn’t last long, but sometimes it’s a little scary in retrospect. Moreover, my anxiety heightens the scariness as well when I can’t get it under control. Trying these coping methods helps a little, but ultimately when things are really bad, catharsis by crying and praying is the only thing that helps me feel remotely any better. Once the emotions are drained, it’s then possible to look at solutions as to how I can make myself comfortable while dealing with the chronic illness. For me, the pain won’t go away, but I can deal with it by not making it the center of every thought by trying to do the things that I need to get done or do my hobbies like reading or my language learning activities.

Regardless, things have been looking up emotional-wise. I’m glad that things have slowly gotten better over the past few weeks in all my personal relationships even if my physical health is deteriorating to balance out the emotional stability that I’ve slowly gained. However, I do my best to not allow my illnesses to interfere with my personal development as much as possible, and this blog helps me stay accountable while being a place where I feel willing to write down my thoughts.

My goal of self-improvement (among other goals) stems from wanting to have a better relationship with God, my SO, and myself as I deal with the fact that I’m more than likely won’t ever escape my chronic illnesses like I wished desperately to when I was a little girl. It’s a continuous challenge, especially as my illnesses sometimes dominates my mind and body, but as I stated before, achievable. As Albert Einstein said: “You never fail until you stop trying.” I’ll only fail at my goal when I stop trying so as I don’t like failing, I obviously can’t stop trying.

Some Thoughts of Living with Chronic Pain + Andrew Lang’s Myth, Ritual, and Religion

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How do you live and cope with chronic pain and illness?

I haven’t quite figured it out myself yet what that question exactly means to me and exactly how I do it beyond taking things one day, one thing at a time because who knows how I’d be feeling later in the day compared to how I feel in the morning. Some days I can walk fine at one point of the day and then be unable to walk at another part of the day. Sometimes the weather affects my illnesses and makes them worse. Coping well is hard for me at times because there are many times that I want to give up. I end up praying a lot, if only to find time to ease my mind which tends to happen as it gives me something else else to focus so in the meantime I calm down enough to look at the situation after a little more time has passed and go back to resolve it if it means that much to me.

Being constantly ill as a child to now as an adult in my 20s, life has been wild in regards to how much I feel like I’m lacking compared to everyone else. Chronic pain has stolen a large swathe of my life and will continue to do so. Most days I’m lying in bed. Rarely do I leave my home; I leave once on average, or twice if I’m feeling really good, per week. I don’t have the energy nor the tolerance to be somewhere not comfortable while my body goes through enough pain that I want to go hide in a corner and bawl my eyes out. Most of my attention throughout the day is focused on my pain, focused on making me comfortable with the limited movements that I can do that won’t send pain ramming into me. I’ll be going in for another review of myself at the doctor’s next month, so at least there’s that.

In the meantime, I try my best to focus on my hobbies and doing household chores that I’m able to do on my own. I’m so blessed to have him in my life – someone who loves and supports me despite my general craziness and how ill I can get. Through thick and thin, I know I can trust him. For my hobbies, I feel like I need to create a more structured environment, but I find it incredibly difficult to do things when I feel unwell – pressured or not. I do have many moments where I can suddenly study with deep concentration for a few hours (and by few, I mean 2-3) on end, but that’s only a few times a week, and I’d like to extend that to at least four to five times a week on top of doing my chores.

I’m not quite sure how I feel about Andrew Lang’s Myth, Ritual, and Religion. A good portion that I read so far (I’m 25% into the first volume) strikes me as “meh”. I’d rate it at a 2/5 so far. Lang goes on to making sure the reader understands what a civilized person believes in regards to myth as compared to a savage. The terms civil and savage doesn’t work for me, personally, but Lang is explicit so that makes it easy to understand what he means by those terms. Perhaps I’m misunderstanding or looking too much into it, but Lang seems to just radiate white superiority when he writes about savages sometimes, or at the very least, he uses examples of such stereotypes as to show white superiority while just about what seemed to me dissing of every other culture because people saw just as much value in other things as humans, which was one of the reasons of what made a person savage. Like I said, perhaps it’s just me misunderstanding the him and he didn’t mean to come across like that, but he does to me. The book has turned into a bit of a slog for me, but I feel that I should try to finish the first volume at the very least.