Elephants in the room

(For a glossary of "characters" and their nicknames, check here.)

I've been putting this post off for a while, because every time I think about sitting down and typing it all out, I'm just overwhelmed with the effort that it will take and I figure I'll do something easier. Did you know it takes energy to feel things, and more energy than that to actually process them or record them? Yup. Lots of energy, both emotional and mental, and most times it's easier to just say, "Ehhhh… I think I'll go look at funny pictures of cats, instead."

However.

I do need to get this all out there, because negative thoughts in my brain are like a poison that infiltrate my daily workings without my really being aware of it, and they taint my reality. So it is important to me to get it all out there, outside of me… where I can evaluate it more intellectually, without the ineffectual whirrings and endless cyclings of my thought processes. I've been trying to get it out, verbally, with the Dragon, but that hasn't been going so well. I've been very moody to boot, because I've got all these fears and feels and crazy thoughts all just tumbling around in my head and I'm desperate for consolation and affirmation and someone to set me straight and tell me that it's all gonna be okay and that I'm wrong and I'm amazing and all that jazz… but that is definitely not Drogo's strong point. It's okay. I know who I married, and while I may be frustrated by it at times I have acknowledged from the get-go that affirmations are really just not something he does well. But since he's my husband and my mate, I instinctively look to him to fill my needs (especially as he's the one around most often), but I realized recently that I've been asking too much of him, asking him to fill a thousand different roles that can and should be filled by a myriad of people. No one person can be everything to another person, and it's silly and futile to expect that… but I kinda have been.

It doesn't help that I'm a shut-in, so unless people come to me… nothing is going on. Also, it takes energy to reach out and ask for help, and often it doesn't feel worth the effort. I want people to just know that I need help, and that I need it all. the. time. and to just kind of… do things that help. I'm tired of asking for help, if that makes sense. I just want to be taken care of. I'm tired. So tired. Tired of phone calls and doctor's appointments and medical bills and futile attempts at keeping the house tidy and being stuck at home every single day and feeling like I should be doing so much more and better when really all I want to do is curl up and hibernate and have someone else come deal with my life for me so I can focus on just being sick and hopefully getting better. (Essentially? I just want to be a house cat.)

Right. So there's all that. But anyway, I realized that the glories of the internet mean that I can reach out to my friends that are scattered across the country and dump on them instead of my husband! Genius, right? So that's kind of my plan… is to spread my woes a little more thinly and evenly across the network of "people who give two shits about me" and ease some of the tension that I've introduced into my marriage. Being married with (and to someone with) a chronic illness is hard. He's doing an admirable job. I just have a ton of feels that I don't know how to deal with and neither does he and so we're left with a bunch of elephants in the room, but if you've seen my living room then you know that it's barely big enough for the furniture we have in there much less a bunch of elephants and so it's pretty crowded and we're both on edge.

The other day we were in line at the bank and I started talking about how I feel and the negative thoughts rattling around in my head, but Drogo told me to stop talking and wait in line quietly. Why? Because what I was saying was bad and not true and he didn't feel that I should be giving power to those thoughts by speaking them as though they're reality. He told me to "write about it". So here I am. But see, the thing is, I already wrote about it the other day to Rose, so I'm going to do some copy-pasting here in a minute… but first I want to bring up a couple of things that I haven't really discussed with anyone, save Drogo (briefly) and one or two of my fibro friends (again, briefly).

I'm terrified.

That's no secret, but the thing is that there are many things I'm terrified about. The one that I haven't really voiced to many people yet is this: I'm so, so, so afraid that there's nothing else wrong with me, that it's "just fibro", and that there's nothing fixable or treatable about my situation. I've tried all the fibro meds, and they did worse than nothing. I'm still on gabapentin, a fairly high dose, but my pain is still at high levels most of the time. I stretch and exercise a little every day, I eat as healthy and simply as I can, I hydrate, I tried yoga (which I still do because I love it and it feels awesome sometimes), I tried acupuncture and massage and Kangen water and yes I take B vitamins and my vitamin D levels are good and so are all my other mineral levels… I do all the right things, but I am still getting worse and worse… and if it's "just fibro"… then it seems there's nothing I can do about it but hang on for the continued decline and hope that I die before it gets too terribly miserable. (I keep saying, "I don't know how it could get worse… how could I possibly feel worse than this on a regular basis?" And then it happens, and then I'm sad. And round and round the cycle goes.)

I'm scared that we'll never find out what is really wrong with me and I'm just going to get sicker and sicker as Drogo stands by, watching helplessly.

I'm scared that I'm going to get worse and worse and worse until I'm basically just a sad piece of meat with a pretty face that can't even go to the bathroom by herself.

And then there's the existential crisis part of things… and this is where I'm going to copy and paste from my conversation with Rose, because why explain things twice when the first time was eloquent enough?

"Speaking of rehashing stuff… I've been having a very hard time lately with my sickness and disability.

Maybe because I got the news it's not lupus… because now I STILL have no answers… and the thing that seemed to fit so well (albeit a horrible fate) just isn't, and I don't know what it is and I'm really afraid that it's all just in my head you know? That, like, somehow I'm making myself sick... And I'd stop it if I could, but I don't know HOW.

And I'm afraid that deep down I don't really want to stop it because this kind of gives me a free pass out of life, you know? And responsibilities.

Blah. I dunno. It's just so HARD to be sick all the time and not know WHY and not know how to FIX it and for even the meds that are supposed to help to not really be effective… and to wonder if I'm just going to keep going downhill until I eventually die of some mysterious cause?

And I'm just like… what kind of a wife am I? Kahl Drogo married me expecting to have a partner in life, to have babies and make a family… and he got THIS.

I feel so LOST. Especially now that I can't even do the healing journey anymore. Like, what's my purpose for even being here? What is the point of my life? What good am I? I guess it comes down to intrinsic self-worth. Now that I CAN'T do anything productive, really… who am I? What am I worth? What can I contribute to the world?

“It must be really tough to not feel like you're contributing to the world”

Yes, it is. I don't know what to do with myself besides sleep… I've started doing at least 1 run through of Sun Salutation (a yoga practice) a day, and that makes me feel a little better about myself… like I'm being more proactive about my health… and my weight.

I've gained more weight. I'm trying *REALLY* hard to see myself as a good, valuable, lovable person, but… I accomplish very little, I look different than I used to and how I feel that I should.. I basically feel like a failure as a human being and a woman.

Like, by the time Drogo gets home I'm usually feeling so terrible that we don't even have sex hardly at all anymore. And I think that hits me the hardest. I know it's because he cares about my physical health and doesn't want to make me feel worse (and sex often does have a backlash on me and I kinda flare), but I have a hard time not believing that it's not because I'm now an unattractive, heavy person.

Oh Rose… I'm just so lost right now. It's so HARD. LIfe is just HARD, and I can't understand why...

I have SO MUCH to offer the world, and I'm trapped by my body and my circumstances and it's NOT FAIR.

Like, why me? Why not G? Why not people who do terrible things?

I've only ever kicked a kitten on accident, I swear!

And I'm just so lonely...

Oh Rose… life is just so hard.

And I don't know what i can do about it, if anything.

At least I don't actually believe the person who told me that I got sick because I left God.

It's just really hard to find reasons to keep trying.. to keep waking up every day… to keep living.

And that terrifies me.

And what scares me the most is that, based on personal experience… I can only expect this to get worse. How much worse can it get? I can never imagine how I can feel worse, but then it comes and I do...

How long am I going to have to live like this? The rest of my life? Is my health just going to keep deteriorating for unknown reasons for years and years until I'm basically a pain-wracked vegetable?

Rose, I want to have kids! I want to grow a garden. I want to hike the Grand Canyon rim to rim. I want to travel to Italy with my babies and feed them awesome food and show them old buildings and wonderful paintings. I want to make my family pancakes on the weekends and keep the house clean so my husband WANTS to come home to his happy family… I want… I want so much.

I just… I don't understand. And that's okay. I know I don't have to. I just wish that I had something to cling to...

Even when I was a Christian...

there wasn't much hope for me, sadly.

Just the fear of what would happen if I didn't do it all right. I know now that that's not the way.

Someday I'll find it.

But I still believe in God… in higher purposes…

but I just don't see how my being unable to contribute to the world serves a higher purpose.

So anyway… now that we've hashed… lol. I'm just having a hard time lately. Drogo knows, he understands, and he's been good about it. Really good.

We talked about how I'm less physically capable than I was before, as much as I hate to admit it, and I need help keeping the house somewhat tidy since that is VERY important to me. (And let's face it… I have to look at it all day lol)

So now he is in charge of sweeping the floor every other day or so. And he also *finally* got on the ball about the water leak in the front yard and we went to Lowes the other day and got a rake and a shovel.

Tomorrow he will probably get some of the guys over here to help, but he's going to dig up the front yard and see where the leak is coming from and fix it. It's been a month or two in the "putting off" phase lol"

And that's where I am. I'm scared, I'm lonely, I'm overwhelmed, I'm really sick… and I'm so tired. Tired of fighting. Tired of having to fight, each and every day for… for what? I'm lost. I'm lost and lonely and fighting to feel like a decent, worthwhile human being.

And you know what else? I didn't mention this to Rose, but I'm angry. I'm very angry. I'm angry that I've been "struck down" and so many other people are free to do as they please with no physical ramifications and they feel fine and they can go about their lives and work and have fun and raise families and I can't and I don't know why and it's not fair because I'd be so amazing at all of those things!! I'm angry because the Dragon has the physical capabilities to do anything he wants… but he doesn't. I mean, he does do what he wants, but he doesn't do what I would do if I were to have his health. I'm angry that he gets to be healthy and I don't, angry that he is healthy and chooses to put stuff off anyway, angry that he's fine physically and he doesn't automatically step in and take care of me… angry that I have to ask so hard for what I need when he can so easily provide it… angry that, after months and months of asking, NO ONE in my circle of healthy friends has stepped up and helped me straighten up my goddamn craft room!!

I'm furious that I'm at the mercy of everyone around me, and it doesn't feel like people really understand that or care as much as I'd like and need them to. I'm furious at how helpless I am, how lonely I am, and how I'm powerless to do anything about it when I used to be such a powerhouse of getting stuff done and helping people and being there for others…

People I know keep telling me, "Oh yeah, call me when you feel better and we'll get together!" Folks, it's not happening. I pretty much don't ever "feel better". I have about three modes: feeling bad/poorly and worn out; feeling awful/exhausted/all I can do is sleep; Please Kill Me, You Would Be Doing Me A Mercy. So if you want to see me, you have to come to me. Come pick me up, take me someplace. Call first, see if I'm sleeping or feeling abysmal, and if I'm not I'll probably come with you as long as you are the one making the effort to drive, make plans, etc. I go with Drogo on errands on the weekends, even if I'm feeling really gross, just because I want to spend time with him and that's my one chance during the week to be out and about. I may drive to and from a doctor's appointment some time during the week, but that doesn't mean I'm "out and about". I'm trying to scrape together enough energy to make it there, get through my appointment, and make it back home safely so I can collapse on the couch or into bed.

If you miss me… show me. Come to me, because I can't come to you. A few people do. But not most of them. And that both angers and completely engulfs me in grief. I've had friends tell me, "You're isolating yourself. That's not good. You need to get out and do stuff again; get involved." Oh, I would if I could. Maybe I am isolating… but not by choice. And I'm furious about that.

So please, those reading… feel free to comment with some affirmations. God knows I could use it right now. My body always feels like junk, but it's hard to have your heart and soul feeling gross, too.