Self-Worth & Douchenuggetry

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autoimmune, books, chronic illness, chronic pain, lupus, pain, relationships, self, sick, worth

I haven’t ever really had issues with self esteem, low or otherwise, before. I’m not exactly modest and I value the traits of mine that are good, i.e. intelligence and reaching out to people. Having a chronic illness has made me realize, though, that self esteem and self worth are two very different things. I knew this before but not as vividly as I do now.
I recently posted on Facebook that I have been having issues with how worthy I feel. And worthy of what, exactly, is kind of irrelevant. It’s more of an in general feeling. Am I worthy of help? Am I worthy of being given a break? Am I worthy of having good relationships? Or am I worthless because I can’t just go get any job? Am I worthless because I can’t keep up with everyone?
My exact post was: “So tired of feeling worthless and that I’m nothing since I don’t have a job. So tired of being screwed over by my own body. And trapped in it. And I’m so tired of feeling tired and of not being in excruciating pain but being in enough pain that it interferes with daily life.”
And then in the comments I posted a couple afterthoughts: “I wasn’t going to post this but then I realized so many of my chronic illness friends can probably relate and sometimes it just helps to put shit out into the world. And the kicker? I feel like since I can’t do anything that gains money right now I might as well not do anything at all. And then I fuck myself over because what if writing my novels DOES end up making me money? But then again, what if I just feel even more frustrated because the classic writer’s frustration….our family and friends don’t see any point in the creating process because you don’t get any immediate gratification. Add in my already shitty feelings of worthlessness and well, fuck it up the shit creek with the rest of this douchenuggetry.”

I have amazing friends and family. And my dad pointed out my job is raising my son. I don’t think anything is more important than my son. The thing is, though, I sometimes feel even worse because I am a mom and I haven’t been able to provide by myself. It’s always been someone else; all my problems started when I got pregnant, or just shortly before, and I haven’t been able to bounce back long enough to move forward without getting shoved back down by a diagnosis or symptoms. I do believe that my success, if you will, is directly related to how healthy and happy (within my control) my son is. I say within my control because, well, let’s be real…if my health and happiness were in my control I wouldn’t be writing this and no matter how much I pray and broker for the health of anyone else, sometimes the Universe can’t provide. But even if I successfully raise my son, I need my own identity. And that’s another part of life that gets screwed with so much when you have a chronic illness.
I know I am powerful and intelligent and fierce and a fighter. Somedays, though, it is very easy to forget that. Especially when you need something or someone to help and asking makes you feel like you’re doing this semi-cowardly semi-groveling beg for it. I might not care about my pride, but my dignity is another matter entirely.

So where do I go from here? I’m not sure. The obvious thing is that I need to take steps to improve my own opinion of how worthy I am, especially in regards to my illness. I’m not exactly sure what that looks like yet but I think it will involve making small changes to things around the house and in my lifestyle (better nutrition, better exercise, smarter choices in general, DIY projects). A feeling of accomplishment is what I’m seeking. Growth. Progression. Forward. Like an arrow, pew pew pew.

An update on what I’m reading:
“Heir of Fire” by Sarah J Maas – third in her Throne of Glass trilogy
“Daring Greatly” by Brene Brown
“Bread & Wine” by Shauna Niequist
“Come Winter” by Claire Gutierrez
and I just picked up “Herland” from the library, a classic utopian from 1915 by Charlotte Perkins Gilman

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Because Your Words Can Hurt More Than My Pain

Tags

autoimmune, awesome, chronic illness, chronic pain, depression, feeling better, lupus, pain, relationships

I need to vent

Pain is exhausting. Being sick is exhausting. They can be soul crushing and brutal. But they aren’t as bad as some of the things people who I care about say. I can’t do this alone, there’s no way, yet…I wonder if I would feel less guilty and ashamed and as if I am a burden. Pain and illness have become a religion and I’m the only one who knows that the faith is not fruitless because I’ll be damned if these sadistic gods let me ever forget their “blessings.” But I can’t pull a goddamn (pun intended?) antibody or MRI of my ruptured discs out of my ass and say “LOOK! DO YOU SEE THIS? PLEASE SEE MY PAIN, PLEASE DON’T MAKE ME PUSH PAST IT AND PROVE IT TO YOU. Please. Please just have faith in ME when I tell you that I’m in pain”

Some people think I’m only in pain when I “don’t want to do something”. Yet it’s only when they tell or ask me something that might affect my day. It baffles me. I don’t WANT to do laundry or dishes or mop the floors but I do them anyway and yet no one asks if I was in pain. But then when I do speak up and ask for help or say I’m in pain, suddenly it’s only because I don’t want to do something. No, fuck that. Because, really, when I’m in pain it’s reversed. I do want to do all this mundane boring house shit. I really really do. Because I want to prove that I can do things and I am strong and I get so fucking PISSED OFF at myself and my body that I beat the shit out of it quite literally by doing physical work that my neurosurgeon would slap me with his model spines with. And when it comes down to me asking for help, 98% of the time I’ve already sat there telling myself I’m a super shitty person for needing to ask. Which SUCKS because I don’t truly have low self esteem. At least not until my body went to shit. But with every doubt and “wait, weren’t you just fine when you went to hang out with people?” (pro tip: NO but I decided I would deal with the pain because it was better than sitting in the house), I feel like I’m getting knocked down one more step of the proverbial “worth a damn” ladder. I may be strong and resilient but it’s not easy to maintain.
The real kicker is when I’m not even asking for help. Just saying, hey I’m in pain so I’m going to do XYZ or not do TUV because I need to take care of myself. Yet then it’s the same remarks and accusations as the times that I do ask for help.

I’m begging you to please…PLEASE please please please understand. Please don’t doubt my pain. I feel like I’m punched in the stomach or my heart shatters a little whenever it happens and I know that getting frustrated is inevitable; I know that there are times where it’s too much to handle and it’s going to be more rough than it usually is. But life would be a hell of a lot easier for all involved if people wouldn’t doubt the one thing that is constantly there for me. My pain.

Just…think about it this way…I don’t want to be in pain anymore than YOU want to help me deal with my pain. I don’t want to ask you to help any more than YOU want to try to figure out how you can help when you have, oh I don’t know, your own personal hygiene to take care of. I DON’T WANT TO BE IN PAIN SO WHY WOULD I FAKE IT

I used to think there was nothing I would not do or give to be pain free. Now, though, I’d take the pain if there were a way to make people understand.

“Are you feeling better?”

Tags

autoimmune, chronic illness, chronic pain, depression, feeling better, lupus, pain, relationships, sick

I know people mean well by this but it’s…it feels like a trick question. Same with “are you still in pain/are you having pain right now?”
I’m in pain every day. Maybe not bad, maybe I feel good, but I’m sore 99% of my waking hours. Right now I have the usual stiffness that comes in the morning/early afternoon and I also have this really annoying pain in my shoulder/shoulder blade/upper right arm that’s actually REALLY STARTING TO ANNOY ME, STAHP IT MUSCLES!

One thing I don’t do, however, is answer with “I’m fine” when I’m not actually fine. Even before my illness I usually chose something at least a bit more personal and indicative of whatever state my mood and life were in. Part of it is my inability to lie, even if it’s just a little white lie or what have you. The other part – INTJ personality – sees it as completely useless and illogical to tell someone I am fine when I am not. If I’m not fine I will tell you. I will do my best to not be a downer about it; but if I lie and pretend I’m fine that only makes me feel like I need to exert myself more and it frustrates others when they think I’m doing okay but then I can’t take them up on a social offer or a favor. I do understand why other spoonies do say it regardless, though. And that’s okay. It’s their right.

But alas…”are you feeling better?”

I wish. I may have my good days. I may appreciate them more than a healthy person would. But feeling better…even if I do feel physically better one day more than the previous day, I am still cautious and wary of my next flare, bout of nausea, joint aches, muscle stiffness, etc. etc. etc.

The last few weeks have been harder than usual for me, mentally. I find myself trying to fathom and imagine a life without pain. Thinking about how this isn’t normal. Normal 23 y/o are not in pain even half the time I am. It’s not necessarily making me slip into depression, but it’s definitely not helping either. It’s very similar to when I try to fathom the Universe before the big bang…obviously there wasn’t one…but I try to imagine how all the components came into existence…or I try to imagine how a “creator” came to be. And I just can’t. It’s like a loop of constant mind screwing.

So, no, I am not feeling better, per se. But I am feeling up to pushing my limits.(Chronic Illness Cat is the best – go like them on Facebook)

I

End of the Road

Tags

chronic illness, exercise, exercise journey, hope, lupus, progress, reading, walking

So, let’s wax poetic a moment.
I’m at the end of the road. And it’s actually the beginning. Not that way like something has ended and therefore something else is now starting in its place but literally…okay fuck this, I don’t feel like making it all pretty even though I generally do with words.
WHAT HAD HAPPENED WAS…I ended up not working out/walking on Thursday. I have been fighting chronic fatigue desperately this past week and since my son was with my dad I meant to read after sleeping in but ended up falling asleep on top of Little Women (…haaa).

Then yesterday I just forgot. I meant to but by the time I was like “okay I want to go walking” it was getting to be bedtime and was a lot colder with the sun down.

TODAY…I got the dogs leashed up…got my son in his coat and shoes. And I decided I didn’t want to just go to the end of the sidewalk (which doesn’t reach to the end of the road, I don’t know, don’t ask me I just live here) but that I wanted to go all the way to the corner. Now, it’s really not a big deal. But I really have to think about how many spoons (for those of you unfamiliar with Spoon Theory, Click Here) I have for the whole walk – not just how far I can GO but how far I can walk BACK. So I err on the side of caution. Because for me, pain doesn’t mean that perseverance or the desire to get better is whispering “just push a little harder, just get through it, you’ll get better/faster/stronger”. For me, pain is my body sternly saying “We NEED to stop soon. I can likely get you through the rest of the day with the ability to function and get around but if you push this, if you go harder, I will shut you down in bed.”
So there’s that asshole. Obviously today I felt pretty good, considering. I have been having nausea and the fatigue is still strong. But we walked all the way to the end. And made it back. I had to stop and rest for about 10 seconds, twice. My son asked what was wrong and I old him I was hurting. That sweet boy said “okay, we get you home mommy.” I hope that maybe just MAYBE these small advancements that don’t strain me much WILL get my muscles growing. I am well aware of the fine line between exercising that is beneficial to someone with lupus/fibro/back issues and exercising that will leave a person with chronic illness in the midst of a flare + a serious increase in pain for days, maybe weeks. But damn I want to kick ass and look awesome doing it.

I now plan on doing a few reps of exercises for ab, arms, glute, legs. Just enough to feel it but not really sweat it out. I’ll do that tomorrow. Then I will take a bath and read more of Little Women.

What I’m Reading:
Little Women by Louisa May Alcott – due back at the library Tuesday so I’m going to try not to have to renew it
Throne of Glass by Sarah J Maas – this is turning out to be soooo good despite a bit of awkward writing at the beginning when the characters interact; that kind of added to the story in a way, though
**I was reading 168 Hours: You Have More More Time Than You Think by Laura Vanderkam but honestly, it dawned on me…let’s be honest, with my “conditions” I’m never going to know for sure, one day to the next, which hours of the 24 in a day will be spent doing what. Sometimes I wake up and think I’m dead because my eyes open easily and I’m not stiff as a board, ha. Other days…you can guess. BUT I am interested in logging my days and trying to create a sort of schedule/routine that doesn’t go based on time of day but amount of time spent doing something. I generally have a few good hours, they just might start later in the day.

Alright, I’ll do whatever this is again later. Don’t let the bastards get ya down, people.

For Every Person Who Clicks This, WordPress Will Give

Tags

awesome, books, chronic illness, exercise journey, fitness, lupus, reading, writing

…my blog one view!

But no seriously, I’ve been meaning to get into this blogging thing for a long time. Apparently 3 years to this day, actually…I just got a notification from WordPress that this is my 3 year anniversary with them. Ha.
Now I think I’m finally ready to get all up in the blogosphere. Do I want it to get 1,000,000 unique visitors every month? …actually no. No, I do not. We’ll hypothesize 50,000 cause me being an introvert, I just hissed a little at the thought of so many people, even online. Anyway, I would love for the blog/me to become popular and therefore become a platform for promoting important causes, posting my modeling, marketing my writing. For now, though, my goal is to write at least 3 times a week. And for a while I think I will write daily so that I get into the habit.

I want to document things. I recently (like, Monday afternoon) began taking walks and working out a little. It’s hard. It hurts. My back sometimes still feels like it is healing from surgery and the Lupus will never go away. But I’m going to stick with it. Cause…well, why not? Let’s see what happens. And as any good INTJ would do, it will be recorded and analyzed. Sort of. I also want to start a daily gratitude journal but sharing that with y’all HAHA no. People think I’m an open book. For the most part, yes, I am. I don’t keep many secrets; in fact, I have only one or two secrets that are my own. The other hundreds of secrets I keep are those that have been confided to me by others. But anyway, I love my privacy. Even when people (there are a couple exceptions) read over my shoulder when I’m reading an article or something online, I feel a bit infringed on. So, yes, I value autonomy, identity, privacy, keeping things in a sort of sacred confidence between your self, your heart, and any form of spirit you may or may not believe in.

As for the workout, I’m mostly just walking a bit every day with my dogs and son. And then doing a few exercises 3x a week – jumping jacks, plank, body weight squats, bridges, etc. So I’m hoping that by the end of January I will be able to do a lot more. For instance, I’m only able to do about 15 squats after walking and the other two exercises I do before them. A goal of 30 by 1FEB sounds perfectly doable.
I will also track what I’m reading (usually 2-4 books at a time, a good balance of nonfiction and fiction):
Little Women by Louisa May Alcott
Throne of Glass by Sarah J. Maas
168 Hours: You Have More Time Than You Think by Laura Vanderkam
Happier At Home by Gretchen Rubin

I’m absolutely sure that I am mostly certain that I definitely might share a bunch of opinions and controversial things because…I’m the Empress, that’s what I do. This is my circus. There’s an old saying (I believe Polish): “Not my circus; not my monkeys”.
This is my circus with my lions, tigers, and bears…wait that’s a movie. You get the point. Flaming hoops and flippy people up high and all that shit. It’ll be fun!