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

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?”

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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)

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