I got up this morning to use the little girl’s room. Nearly fell over. No reason – just lost my balance. This is “normal” for me, these days. Took my meds. Grabbed a hard boiled egg from the kitchen and poured the salt on it. Filled up my water bottle and dropped the fizzy tablet of electrolytes into it. Warmed up my heat packs and went back to lay down with everything in tow. This is my morning, every morning. A heat pack for my belly to help get my guts active, another for my eyes to fight the chalazion on my eyelid (it’s unrelated to everything else going on. Just one more thing to deal with.) The meds to keep my pain levels in check and to reduce heartburn. The egg to get a protein boost to help fight off the brain fog a little. The and electrolytes to help retain body fluid, which helps reduce the dizzy spells a little. They all have to be finished before I get up again. If I don’t finish these things, I notice it.
I’m not feeling strong today. But it’s the same as yesterday, and it’ll be the same tomorrow. This is my thought. Normally, I go through the motions with no problems. Not today. I’m especially frustrated today, and I muffle a sob from under my eye pillow so I don’t wake up my husband and cry quietly to myself. It feels good to release.
He worries about me. I know he does. I feel so bad asking him to stop certain things he’s always done. He does this strange head bobbing dance which is just goofy, especially when he needs a haircut and his hair bounces all over the place – but he sometimes gets in my face with it, like he did last night (or, was that the night before? I’m honestly not even sure) and it’s overwhelming in so many ways. Too much motion, my eyes can’t focus, which causes them to hurt, which causes me to flare, which causes my body to heat up, and my face tingles, my head hurts, I get light headed and dizzy and he hasn’t stopped because he thinks I’m playing around but he gets it quick when I snap at him to stop while my vision gets darker and my legs get weak.
Instant regret. He was playing and having fun, and I was the fun-killer. The look on his face is mixed with the sting of getting snapped at and concern.
That happens alot, lately. Or it seems to. He says I’ve been really good about it. But I can’t help but feel horrible to have to resort to snapping in order for the over-stimulating things to come to a stop, because I’m just not able to make the words come out gently. I just need things to stop, sometimes, so that I can find my balance, brain, and and sight again. It’s not that I’m angry or annoyed at the actions themselves – I just can’t tolerate them for some reason. One thing gets set off and creates a domino effect in my body, and I have absolutely no control over it.
Breathe in. Promise to do better next time.
Breathe out. Let it go. No point dwelling on it.
Wipe my tears. Find some pants. Brush my teeth. Take the dog out. Brush her fur – my arms are tired really quickly, and it’s a short brush out. I’ve vowed to do at least a bit of grooming every day to try to cut down on the hairballs in the house. She finds her toy and wants to play, so we do! By the fourth or fifth toss, though, my arms feel like they’re going to rip off with each throw. It’s a good thing she’s old and tires out quick, too.
Come inside, wipe here paws, perform her pre-meal games with her, grab a yogurt, fill my water bottle again and go sit down with my feet up to build up some more energy again.
This recharge will give me the most energy I’ll have in the day. After two bottles of water and a couple of small protein snacks, I am normally ready to get some things done. Some days are easier than others… but today isn’t one of them.
I wander in a few circles in the kitchen, trying to remember what I went in there for. Dave asks if I’d want some pancakes if he made them. Yeah, that sounds great. Thanks, baby. Hey, what did I come in here for? He looks at what’s in my hand. Heat bag? Oh, right. I need to do my eye mask again. Thanks, baby. He asks if I’ve been getting my steps in every day. Yes, except for yesterday. I’m not always getting outside for my walk, but I’m getting my steps with cleaning and housework and general pacing when I can’t remember what I’m doing. He suggests going to By the Lake Park after pancakes. I know it’ll be exhausting, but it sounds lovely. I miss being outside.
I heat it up and go sit on the couch again, the weight of the eye bag spreading a comforting warmth through my eye sockets. I sigh. I remember to check my pelvic floor – yep. Tense. As always. I relax my legs. Relax my pelvis, my abdomen, my arms. Relax my face. Let myself sink into the couch, remembering one of the mantras I learned in yoga teacher training. But my mind drifts badly today, and I can’t keep focused on the mantra.
I want to do things. I want to read these books I have piled up (but reading seriously hurts, and takes away from the story I’m trying to read.) I want to walk around By the Lake Park (but I’m SO bloody tired, even though I just woke up, and even two blocks is exhausting and my legs feel heavy by the end.) I want to watch my husband do dumb, harmless, fun shit (but it’s entirely overwhelming for my senses, sometimes.) I want to go on vacation (but we’re broke from meds that aren’t covered by benefits, eye tests, appointments that can’t be direct billed or aren’t covered, hotel stays for Dave while I’m in procedures, the new hot water tank we had to install…. it all adds up.) I want to be healthy (but, well, I don’t seem to have any control of that no matter what I do.) I want a treatment plan (but there are still tests to be done to rule out diagnoses and the treatments may not work without knowing what it is we’re treating.) I want to scream (but my head hurts.) I want to visit people (but even the ride out to them is exhausting, and I’m done before I even get there.) I want to be happy (but, sometimes, I’m just not, and I can’t help that, but it drives me crazy anyways.)
Dave comes and sits next to me and holds my hand.
“Hi baby! What’s up?” I ask. He doesn’t need to know how bummed I feel today.
“Nothin’. I just wanted to cheer you up.”
Damn. He knows. I sob again. “Why’s that?” I say with the best grin I can manage, which I’m sure is more like a grimace, my voice cracking, my eyes tearing up. “I’m just fine.” Heh. I’d like to nominate this Grammy award to…. anyone except me. I’m not good at acting through my personal Swamp of Sadness, even with the heat mask hiding my wet eyes.
He knows and feels my frustration. We do everything together. We used to wrestle all the time. I’d get hurt everytime. Usually because of something dumb I’d do. It was fun. But we can’t do that anymore. He can’t dance silly around me anymore. We can’t listen to loud music anymore, have bright lights, do many activities we used to do. He’s picked up alot of the tasks that I used to do, because I haven’t been able to keep up. We don’t go out to eat nearly as much, because I have to be so, so careful with what I eat. We don’t eat together at all anymore either, because I have to graze. I can’t handle meals anymore, and I can’t handle most of the things he eats at all. I’m in bed by 8 or 9 most days feeling ready to crash, even though I struggle to actually fall asleep until 11 or 12.
Everything is different, and neither of us really like it.
Neither of us is at all upset at the other for it. It’s something we can’t control. But that doesn’t help. I still feel guilty. I feel insecure. I feel inadequate. I’m not able to keep up my end of things. I’m watching TV while he’s at work. I mess up the budget. I waste ingredients making bread that doesn’t turn out because of something I missed. I forget to do things while I’m on the way to do them. I tell him I’m going to do something and then forget. I forget to finish tasks because I forget what I’m doing while in the middle of it. I’m so tired by the time he’s on his way home, and it takes everything in me to create a passable meal for him for when he gets home. He doesn’t except me to do it, but I want to. And all of the old insecurities about working (or, rather, not working) and not getting along with people come rushing up at me again, and I suddenly wonder if I had just agreed to wash the staff dishes at the PCN maybe they would have liked me better and if I’d still be working there.
What. The. Actual. Fuck. Where did THAT come from? The people that hired me there seven or eight years ago were narcissists and played a gross little mind game with me, in hopes that I’d quit, because my supervisor admitted that she told me too much and she didn’t want me to accidentally let anything slip. That, and they wanted to hire part time help in order to save the cost of providing benefits, and I wasn’t impressed with what they were proposing. They asked, and I gave them an honest, fair answer.
I was devastated when they fired me from that job for no real reason, and the reasons they did fire me for were unjustified and undocumented. Not to mention outright lies. It was a huge blow to me at the time. So why was this coming up now? Why do I care about something that happened so long ago?
Insecurities and anxiety are the assholes that work together to bring you lower than your current low. If I’m going to be down, and no one else is around to kick me, I need to do it myself. Old habits that you think are hard to kill sometimes don’t actually die at all and just go into remission now and again. So is the case here. Old stuff that has no place in my life anymore. Especially now.
Dave kisses me on the forehead and goes back to pancakes. I love when he does that. Some say lavender can cure all things, but clearly, they’ve never had forehead kisses. They are the concentrated version of anti-depressants in quick-release form.
I destroy my pancake with peanut butter. Did you know that “natural non-separating” peanut butter only doesn’t separate because it needs to be refrigerated? Keeping it cool also keeps the oils from going rancid, of course, but that’s the trick to making it “non separating”. Which means that it’s stiff when it’s cold. Which also makes it “unspreadable”. We got a giggle of my mashed pancakes, but they were tasty nonetheless.
It’s chilly out today, but nice enough for a walk. I bundle up – I know I get cold easily. Always have. I figured I’d have little problem at -2C, but I feel the bite of the tiny breeze and wish I would have worn a scarf. Oh well. I draw my hoodie around my face more, and be grateful to be outside. The breeze bites a little, but it’s fresh and relieving. We chatted about those kinds of things we chat about – a new puppy which is guaranteed to enter our lives at some point, our old dog we can’t take out in public, the graffiti on the gondola half way around the path, the new updates to the park since I’ve been to it (which has been awhile), what I can see clearly (and not – like the deer he tried to convince me were in the distance. I saw slow moving snowballs.) I tried to explain what I saw… and got frustrated again, because I don’t know how to explain how my vision is wrong. It just is. The colors are wrong. The depth is wrong. The hues are wrong. The outlines are wrong. Everything just looks wrong, and I don’t know how to explain it.
I felt more alert than I have for a long time, but my legs grew quickly numb and my feet started to drag. My legs were so heavy by the time we got around the circuit. It’s not a long walk. But – I got around it. Personal victory! We had a couple of stops to make on the way home to hot chocolate and my fuzzy blanket.
And now I’m exhausted. I want to go to bed. I struggle getting to sleep at night, however, and I worry that having a nap will result in poor sleep overnight. Not that it much matters, mind you – I’m exhausted no matter what, anyways. With limited energy, though, I also don’t truly want to nap and miss out on more the day than I already miss out on. There are things I want to do. A cat to snuggle. Crafts to make. Plants to care for. It’s not even that anything HAS TO get done – they are things I enjoy doing, and I just want to do them. And it’s frustrating that I can only do a sliver of a fraction of what I used to do, and have no idea how to get that life back.
Or if I can.
And this is the way that thoughts spiral out of control, and this is what leads to despair and depression. And that’s a dark, scary place that I don’t want to be in again. That hole keeps getting bigger, and darker, and deeper, and the edge keeps coming closer faster than I can run away from it. Today I’m on the edge. Tomorrow, hopefully, I can get ahead of it again.
But not so much today. Today is a bad day. Today is dark, forlorn, lonely and resentful. It’s easy for someone to say “Hey, Krys, snap out of it! You’ll be fine!”
But I’m not fine. Not today.
One of the things I’ve really started to do this year and last is focusing on “now”. Living in the moment, in the present, instead of dwelling on the past or focusing too much into the future. And I’m tired of the moment. Right now, things suck. Right now, I feel like shit. Right now, I would be willing to do almost anything to get a restful night’s sleep, or to have my mind back, or to be able to have normal vision again, or to have a relieving shit without having to coax it out even with stool softeners and “detox” teas. I don’t like the current moment. Not in this body, anyways. And this adds to my frustration, because I feel so ungrateful for everything around me, because I want more and feel like I’m not happy with what I have. The rest of my life outside of my body is amazing. I want to enjoy it. I’m enjoying it most days in the ways I’m able…. but today, I’m struggling with that enjoyment. Today, I want to yell at whoever is responsible….
But really, that person is ultimately me. If I had taken care of myself better before, maybe things would be different.
But I didn’t. And they’re not. And yelling at myself won’t do any good.
So today is a down day. And tomorrow I’ll be ok again, until the next day that I’m not.
This isn’t the kind of day I share often. And probably won’t much. But they happen. And if you happen along my blog because you find yourself in a similar situation or place, know that it’s ok. You’re not alone. And you’ve got this. It’s ok to be on edge, it’s ok to be sad, or angry, or resentful. It’s ok to need to step back or do what you need to to stay sane. Keep yourself together in whatever way you’re able.
For me, those things that ground me most are chilly walks outside, hot cocoa and forehead kisses.