My Britney Spears’ Moment

Remember when Britney Spears buzzed all her hair off and went totally nuts for a while? Well….

Yeah I know, I shaved my head at least 8 months ago at this point. But the shaving my head isn’t so much the imagery I’m trying to conjure, more the going totally nuts part. Maybe more specifically, an obscenely short lived marriage. Mine made it 7 months, how about you? Two weeks shy of dating for 4 years and a few months shy of being best friends for 8 years. I walked away from my marriage. 

I walked away from my future completely. It’s not like I don’t understand that I can get a new future. Believe me, with every diagnosis I have to reinvent parts of me to move forward in my life. But I never thought this would be a future I would walk away from. I had a husband who despite being dreadfully human; loved me and tried to take care of me, family that is ALWAYS there, professors who were possibly willing to work with my health conditions, an actual decision about what I want to do for a living (if I can hold a job that is), even knowing I am infertile I was comfortable with my next steps I was taking to make a family. I had every part of my life moving forward. Yet somehow I was still drowning and I hadn’t seen any shore yet. I’ve realized, that when it came down to it, I didn’t have any of those life thingies on lockdown. Starting with what was inside my own head all the way to what was going on with him in front of my eyes.

He needed help. Instead of helping himself, he placed me in the role of a parent practically, forcing me to carry him as he ever so quickly was spiraling into the Doldrums. Holding him up was like trying to keep the sand from falling between your fingers after a wave splashes over your hands. Not to mention my hands can only take so much before they cramp up;) –Spoonie joke!

He was so very scarily violent before medications. Only a few of our friends had seen him like this and never any of his family. The friends who had to sleep over in blankets outside my locked bedroom door to keep him from taking the door off it’s hinges to get to me while I was sleeping. Friends who would stay for days, because it wasn’t safe to leave me alone with him or him alone with himself for that matter. But once the medications started to work, he became somewhat functional. Someone who could even-out from his erratic emotions and behavior at times. He became a friend again. I still walked on eggshells, but I didn’t have to have protection outside the relationship anymore.

He prevented me from being able to be me, when the person you are with forever is supposed to strengthen the things that make you you. That was still a problem.

I’ve known I am polyamorous since I was in High school. I wasn’t sexually active until after High school, this gave me a number of years to understand what I felt about this. I knew part of what I was losing myself in with husband was denying the poly part of me. (I must point out that marriage does NOT affect the ability to be poly) Husband and I had always had an agreement that we would be poly, (I, already being so when he met me, and he was going to work on it for himself) but we needed to give each other some focus for awhile as per my policy with every new relationship. Awhile was supposed to be months and it turned into 3 and 1/2 years. Not kidding. With my health issues and husband learning to be my caregiver throughout the flareups and downs, his mental health issues coming to the surface, me having to go on Chemo, and our struggles with becoming adults in the outside world; there was never a good time to start moving our relationship into poly. But he did finally make a deadline after he proposed. I told him I had to be able to start moving into poly life again or I had to consider he wasn’t who I was supposed to be with. I thought that the marriage was a wonderful time for him to understand that he was my primary and another person would never be the reason he could lose me. He seemed to feel this would cement his “ownership” of me. I unfortunately didn’t realize this was how he saw it at the time. He set a date for a year after engagement to start opening the relationship and date other people. When that date rolled around he seemed like he had been hit by a semi truck. He even implied we hadn’t discussed it, ever!? Luckily I was able to get him to admit the bullshit behind that argument, originally anyway. Now that we are separated he is saying all sorts of things to previous mutual friends.

That’s the way break ups work though right? Especially as a girl with mostly male friends… They mostly sided with him. But that also tells me they are believing him when they’re told by husband that I would do particular not nice things, very nonfactual things interestingly enough. Stuff that if you know me you’d look at anybody suggesting them with a funny look. But apparently these friends didn’t actually know me, cause they sure seem to be believing his victim claiming nonsense. Yet they won’t believe me (other than the few who have seen him on the edge with his mental disorder) about his being mean or violent. Decidedly, could they have ever actually been my friends? It still hurts to feel this isolated when I was a victim of domestic violence, yet no one is willing to see him as an aggressor. To the point where they’d rather blame the victim as a liar.

I feel like I’m a stalled car in the center lane of a highway, trying to figure out which fork I take next, to actually get to any destination at this point.

I now definitively can say I don’t know what I’m doing anymore. I know what I was doing, with him in my life, was worse for me, but at least I had a map to follow then. Now I’m struggling to understand what I actually lost when my back was turned so that I never actually saw it. Like the Silence in DOCTOR WHO, I always forgot unless I was looking right at it.

The biggest factors:

Being infertile- I always planned to be a Mom. I want to adopt so badly, always have. But I want to see what carrying a life feels like. Having lost so much in my life, having had so much of my self die inside me, it’s become extremely important to me to feel my body make life not take anymore of mine away.

Being a Burden

Not getting school done— I legitimately only have two excuses for not getting my work done. My frequently difficult health issues and my husband’s inability to do anything “adult life related” to take care of himself. When I had to help with his homework, his class scheduling, his doctor’s appointments, his, his, his…. etc. When in the world was I supposed to have time to work on my own work? Especially when the only times I wasn’t busy taking care of his real world stuff was because I was laid up in bed not in any condition to do anything but request help for even the smallest things (ex. picking up my water glass beside me so I can drink, it would get that bad).

Becoming socially isolated— Yeah, I know. That’s something I said I wouldn’t let happen again. That’s how my abusive ex got me under his control, why would I ever let myself be vulnerable like that again? Because when it comes down to it, I have to trust to love; and I really wanted the chance to love this man. So when he didn’t like me going out without him, because “what if something happened they can’t take care of you right,” I willingly conceded to his judgement. But in the back of my head I didn’t realize at the time, I was only doing this to prevent any “punishment” I would “deserve” otherwise. I was perpetuating the Abuse cycle myself. I didn’t stand up for what I wanted out of fear of the consequences. When did I become someone who was afraid of the consequences? What level of emotional, mental, or physical pain did it take for me to finally fold? Because I sure don’t remember the exact incident.

Feeling worthless— I still can’t shake that feeling of worthlessness that has been creeping up my spine all of these years. It doesn’t help that he would remind me regularly in much more clever wording; that I am indeed worthless and dependent on him. Even though he couldn’t even pick up his medications on his own!? When he was feeling worthless he did everything he could think of (not usually consciously) to tear me down until I felt the same way, brothers in arms I suppose? Well I didn’t want to be held in drowning arms any longer.

Still being abused— On some level I knew I married an abusive guy. Under no fault of his own is he like this though. Before you judge him, you have to understand, it’s like Dr. Jekyll and Mr. Hyde. He didn’t mean to ever be cruel and rarely remembered much of the cruelty afterward. Such are the symptoms with his disease. But to find out he is doing “so much better” medically and the way he was treating me wasn’t doing better… started to be a wake up call for me. This cycle was too unhealthy to live in forever. If he was unwilling to make a solid daily effort toward bettering his mental health for his own benefit and mine I couldn’t stick around and wait to see if I’d get suicidal in turns along with him. But maybe that’s what he wanted? He has certainly implied that before. Would that have “justified it all” for him? Probably not, it would have just given him another way to self-hate. Which is the last thing I wanted since I really was looking for the confident nonvolatile man that I was friends with 8 years ago. I knew after the disease was triggered he would never be the same. Not being nice to me so that my days consist of walking on eggshells and not being safe wasn’t part of the bargain for me.

Being Poly— He wanted all the bells and whistles like you see with a new toy in a commercial. But he didn’t want to deal with actually having to assemble a new toy first. He didn’t seem to understand that there’s a lot more trust and work that goes into a multi-partner relationship than most mono relationships (not because they don’t also need it granted). He loved the lip-speak all about being poly and swinging, he didn’t love the reality. That would be why I resent this fact coming out so late in the game. He wanted to be poly or so he always told me. Until I got to be poly too, then what he wanted did a pretty big reversal. When it came down to it monogamy was so ingrained into husband’s head he didn’t know how to be or think any other way. Before I asked to be allowed to get rid of any OPP rules it was just an acknowledgeable permission to cheat on his part. He enjoyed these liberties immensely. But when I wanted to be allowed to play without him like he could without me the ingrained belief that it’s still cheating reared it’s ugly head. He didn’t know how to think outside the guilt-driven patterns of his belief in monogamy and took it out on me. That’s ok, there’s nothing wrong with being mono, but I wish he’d figured it out a little earlier along in the relationship. I wouldn’t have poured all of me into him then. I wouldn’t have given him every weakness I have as a weapon. I wouldn’t have done a lot of things actually, there are even more things though, I would have done.

That’s what really kills me. Realizing that I stepped back into the abuse cycle when I started dating him, even though I’d been climbing the ladder out of the “abused women’s well” rather steadily at that point. Somehow he triggered me right back into it. To the point where I passed up opportunities that ranged from mildly entertaining to most likely life changing. I wouldn’t be who I am today without having been through what I went through with Husband. But who would I be?

Always Almost There

I feel like I live my life in a perpetual state of almost there.

I am always almost there.

Or that’s what everyone tells me. When I catch them up on my life. Tell them about the turtle pace I’m living. The one accomplishment that’s new since last time we talked, if I’m lucky to have one. I have so many things that I have almost accomplished.

When you get far enough behind it kind be next to impossible to catch up. In those cases I’ve found it’s just easier to start over with a new dream. Try again. But this time I don’t seem to have way to do that.

I’m stuck in this stagnate almostness. While I watch the people around me moving forward and moving on. Doing amazing things, living! It’s so awesome to hear about, to know these people I grew up with are living their lives.

Wearing My Chemo Masks

 

Woohoo... not bad. easily adjustable!

Woohoo… not bad. easily adjustable!

As of the last few days, my masks came in! Super excited, so technically I can go out in public… somewhat… I have to be careful though! Unfortunately, the actual quarantine days have started, so the point where the chemicals take enough affect that they actually make my immune system start crashing… like in slow motion. So, somehow I already managed to start developing an infection! hahaha I would! Lots of sleep and staying in bed hoping I don’t get a fever, cause then the docs freakout:/ Which I suppose technically means I’m supposed to freakout too, but why waste the energy!

Of course I call all of the requisite doctors so they knew I’m fighting off something, then went back to sleep!

Letting My Support System Be That

Support system.

It isn’t even that they finally stepped up. It’s that I finally let them in, so that they could be the support they wanted to be to begin with!

I wasn’t ready yet, now I am. It’s been wonderful. I didn’t realize how amazing a support system I have until I gave it a chance!! Friends that I never thought would want to take the time to see me while I am dealing with these treatments are asking what they need to do (vaccinations, etc) to be able to visit me and keep me company while I go through this. I had a friend today who played video games while I took a nap so I would’t be alone (if I woke up and needed to pee for instance, since I have been losing my balance a lot more lately). I have a number of friends offering to wear masks with me when I go outside, so that I won’t feel weird being the only one wearing a mask.

My friends keep asking what they can do to help. I wish I could properly express that this is exactly what I need and more than I ever expected!

Shoes For Swollen Feet

It’s amazing how much the shoes I choose to wear for a day affects every part of my body. Talk about proving all of my body is connected and affected by the other parts!

I’ve ended up LOVING the sneakers I bought for my job. My RA flare has only gotten worse and as it does my feet are having more and more trouble wearing the shoes I own. I am wearing the sneakers almost daily at this point. I do love the bright colors that are on sneakers now. The pair I have been wearing are bright blue and bright pink and neon yellow;) They make me smile when I look down at my feet and see the rainbow of colors on my feet… I only have one other brand of shoes that don’t just destroy my feet!

Surprisingly it’s Dillard’s own shoe brand called Nurture!! It seriously feels like I am walking around on pillows. I’ve never put on a pair of shoes that had so much cushioning and support throughout the entire shoe! I own two pairs of Nurture high heels (high being no more than 3in.). They are the only heels I can wear for any length of time without feeling like all of my muscles and joints are rusting up like the Tin Man in the rain!

Due to the consistent size change of my feet I own sizes 7 through 9, in a million different styles! I even own men’s shoes, since they often come in wide where a women’s version doesn’t. This gets frustrating picking out shoes. First I have to figure out how swollen I am feet-wise. Then hope that I own a pair of shoes, in the size I fit into that day, that will also go with my outfit!!

Not Getting Sleep

The problem is my brain stops working; when I can’t sleep or my sleep pattern becomes completely incorrect. When I say stops working I mean it feels like my brain starts shutting down, I become more of a zombie or cartoon character by the day; I forget words, what I’m doing, how to do what I’m doing, I fall asleep randomly for a few minutes, and I totally miss what’s going on around me!

I really wish I could give myself something to do at night. When I can’t sleep, so that I can feel productive. Which works really well in the beginning, until my brain stops working. Then doing anything that isn’t muscle memory becomes extremely difficult. My problem with that is, anything too muscle memory, just gets boring for me. I like to learn, teach myself things, express. I could knit; my hands and wrists are exceptionally swollen right now. I may not be able to figure out a position to hold my hands in. Also I may not be able to find a project that I’m in the mood to knit. Which would mean starting a new project. My brain isn’t up for figuring out colors, numbers, patterns, designing. I can easily replace the word knitting with any of the other types of artistry I like to do; I would still end up with the same situation. I will find a new something project-wise soon. Right now I just feel bummed I can’t express my artistry:(

But when I haven’t been getting sleep I start feeling like I am disconnecting. I don’t feel right and it’s so frustrating. I would say upsetting, but there’s this lack of overwhelming emotion, almost like I am too tired to feel upset.

Even writing right now is difficult. I want to get my thoughts out. It’s amazing how long it takes me to get one sentence, let alone one thought written out. But it gives me something to do. Perhaps it will exhaust my system in some way I haven’t thought of to allow me to go back to sleep? I can’t even do research. I can’t process anything I try to read. this is an all day thing not just in the middle of the night.

Not sleeping at night affects my day so badly. I have a lot more trouble coping with anything during the day when I haven’t been sleeping. I’m not referring to the cranky, snappy, over-emotionalness that goes with the initial lack of sleep or weird sleeping. More like I feel like a zombie; like I’m not really a person that is fully connected in the world. No I mean the completely emotionless not processing, what you are saying, not understanding what my response to the situation should be, totally disconnecting from reality… it’s less disruptive, certainly; but it’s more disconcerting and dare I say almost scary for me to feel?

The less sleep or the more weird sleeping I get the worse I will be triggering my Fibro flare-up too. Up until now I hadn’t been doing so badly with my Fibromyalgia. Until recently my Arthritis was the disease being a distractingly annoying twit. Well… also my MS or whatever-not it is, we don’t know so I’m choosing not to think about it at 4:00am… My muscles are starting to ache and the bruising points down my spine restarting to not be even lie-on-able.

I often feel like I am opposite most people with Fibro. We find that fibro-points generally progress in a similar fashion despite the person. The spine fibro-points aching is generally an indication that a Fibro flare has gotten bad enough that it’s at its “worst.” In my case I tend to get the spine pain if not first than pretty close to it. Honestly I haven’t figured out if it is just that I have trained myself not to listen to that “low a level of pain.” If having hurt for so long, as with other particular pains, I’ve trained myself to maybe note it in passing. In general I just forget it after the initial notice unless the problem becomes past my pain tolerance or consistent in presentation.

I know that I will find something that gets my body back into the right sleep-cycle. I know I will find something to do to pass my time and even potentially feel good about something by being productive until I do figure out how to correct my sleeping this time around. While I am going through it though, I have found that sleep problems throw off my mood more than almost any of the other symptoms I deal with long-term. I will get through it, but more than so many of the other issues I deal with, I have to continuously remind myself of this with the lack of sleep becoming so bad. I start feeling like things can’t end or I can’t get out. But I’ve been through this too many times to mope for too long. Too many times to forget or ignore that I know it gets better! I just have to wait. Waiting is difficult for anyone. I’m an exceptionally IMPATIENT person!! I don’t like just sitting around. When I decide I want to do something or have an idea I’m pretty hard pressed to stop from getting things done.

I got two loads of laundry done today… Usually I would feel proud of this, on a day like today, when I’ve been hurting too much to function physically! When my mood gets like this I have trouble being proud of much of anything:/ This makes it so that I minimize even the bigger accomplishments that I might (by luck) manage. Of course the little things thus being “nothing” in my head, I doubt myself; that I should have done better, that I shouldn’t have bothered at all. That I don’t have anything bigger to be proud of and never will…

Yeah I tear myself down that’s for sure. I never have mood issues like this until I am having sleep issues. Hahaha gee… ya think maybe they’re related? Yeah me too… I’ll get up and get some vitamin D tomorrow, go outside and listen to music or read, “I can mope inside just as well as outside.” and I’ll feel so much better, I’ve already decided, humph;)

Someone to TALK to

Sometimes I just want someone to talk to. Who isn’t listening just cause I’m paying like the therapist does. I want someone to actually want to hear the ramblings in my head. I have people that I would be willing to listen to anything, often strangers I will make this connections with over more subjective friends, but I would be willing to listen and ask questions of these people until I felt what they felt. So that for a few minutes with me, they aren’t alone. I want someone who can feel that way about me.

I think so often people mistake this as a trait necessary for a romantic relationship or a trait that produces a romantic relationship. Don’t get me wrong, you can totally have this with your partner I imagine, but it doesn’t have to be that, you can have intimate connections that are platonic. It’s about finding someone who for one feeling, or experience, or moment they understand not logically, but by being there in it with you.

I am a person and the person for so many people I just want one person to be that for me. I would at least try to reciprocate. I would like to guarantee  I would be a good friend in return, but I’ve never been on the other side of the bargaining board. I’ve never gotten to be the person who could say things weren’t hunky-dory. Don’t get me wrong I talk a lot, beyond a lot, excessively. But complaining about the state of my physical well-being and the hardships that their are catch-22s within catch-22s for me to deal with; those aren’t part of the conversations.

In my academic classes about how our society copes with disability as a group/class/minority they would say it’s the supercrip image idea; I have to keep powering through, I can’t have doubts, have to defy the odds, not just by being better than a societally created image of “a sick kid/cripple,” but by being better even than a champion who trians for nothing but one thing their whole life… I defy the odds by getting out of bed on some days, thank you! But I certainly don’t what them cheering for me when I lace-up my own shoes (in general). I guess there is an in-between of respect and understanding, that I want, that the norm of our society hasn’t set up for me to receive.

The biggest problem. I’m far from a supercrip.  may always be sick, everyday a struggle, but I’ve met plenty of people who I would find trying to adapt to their life a lot harder than the life I know. I’m also not a supercrip as far doing amazing things. I can’t do the kid with a disability equivalent of leap skyscrapers in one bound. I’m me: 27yr old, still dependent on my parents, trying to get through college on year 7, sick and hospitalized here and there, trying to get a job, finish Incompletes for classes required for my major, deal with a BF who just tries to be there the best he can’t but the rules change out from under him depending on the day and the pain, figure out how to actually logistically be independent (let’s start with being able to bath myself maybe), make it to classes regularly so I’m not always on catch up. Actually manage to see al the docs and get the tests done I am overdue for at this point…. Hoe am I a supercrip? Right there, that’s why that phrase is insulting. I’m me. This is hard. Life, I mean, no matter what circumstances you have to learn to cope with. But It’s my life, I love it, impossibilities and all. I’m gonna get through all of this and be an amazing contribution to society; be it in my own understanding of that or society truly seeing my contribution as relevant on its massively prejudiced grading scale.

BBQ Through It

Despite the pain and stiffness, we managed to pull off a nice BBQ and fire on the patio! A ton of people ended up showing up, but it was relaxing and calm the whole time:) I’m starting to realize as we get pickier about our friends, we have formed a few groups of some really neat, good people.

We’ve been working on eating better lately. I was raised on all organic foods. I also had some interesting allergies and sensitivities to food growing up. But with the hectic-ness of figuring out how to take care of myself and the lack of budget I work with… I admit it, I’ve been eating mostly junk.

When I moved into my apartment midsummer my parents gave me a new gas grill as a move in gift. We have used this as an excuse to grill everything and anything you can think of! We are loving making asparagas fries on the grill. We even tried grilling avocado… but I can’t turn down trying anything with avocado involved;) No seriously it was good!

Our friends that we work with were all looking for something to do for the night. The majority of us had a shift or two coming up that would be working until 5am, so not many of us were interested in a crazy party night. My BF and I decided this was a perfect opportunity to restart our grill out tradition from before we moved two years ago.

Now I’ve been hurting more and more every day this week. I am hoping it’s weather change or stress and not that I have a full blown flare-up coming. I do know I am bordering on a migraine with the way I have been dealing with my vertigo and the headaches I’ve been getting on and off.

Well I’ve been hobbling around all day in the house by myself. Problem is I can start to get into this mind frame when I am hurting, especially if I am going down hill when I have my hopes up about something coming up! (getting a job, classes starting) When I get like this I find myself getting antsy and needing an “adventure” of some sort. So I decided the mildest adventure I could manage, when I couldn’t walk around without hanging on to the furniture, was a BBQ on our patio. We have a fire pit to, so it makes for the perfect end to the night relaxing with a drink, watching the fire, roasting some s’mores.

We decided to just invite everyone we could think of that would understand keeping a relaxed atmosphere as well as be comfortable with just conversation and quiet music. You might be surprised how few kids in our age group can figure out how to have a real conversation without requiring electronic stimulation or only speaking of superficial topics. We had no idea who would end up making it to the BBQ. Another typical behavior of kids our age is that they don’t commit to anything until the last minute, almost like they are waiting to see if a better offer comes along…

We knew that two of our more interesting conversationalist type guy friends would be showing up, so that would be enough to have a nice night and encouraged us to start our preparations. We chose mostly vegetables to cook, but made hamburgers as well. I used my Momma’s homemade BBQ sauce, I don’t know how to explain this, if you haven’t had it the way my Momma makes it (that goes for any food) you haven’t had it the way it was supposed to be cooked;) I didn’t have very much of it left do I decided to go bold and kneaded it into the beef with my hands. The meat smelled yummy even raw! I chopped up the veggies and spiced them the way I wanted them. Then I set out the sauces.

All the while the guys showed up wandering through to give their greetings and fill my bottom shelf of my fridge with beer, then they were chopping wood from a tree that fell over the summer with a mini power saw! Oh dear! They started the grill and cleaned it, cleaned the eating table and chairs, set up the ihome outside, and filled and light the tiki torches. We had the perfect atmosphere in a snap. I had wine chill in the fridge and asked one of the boys to uncork a bottle for me, no way my hands were doing that. I wish I could figure out how to describe the creativity that can go into chopping with a knife when your fingers can;r apply enough pressure to snap a snap and your fingers can’t bend enough to hold a door knob.

When the hectic-ness for me was over, I had finish chopping and seasoning, I had my glass off wine and I stepped put side to sit with our friends. While I was in the kitchen chopping; though I had been copiously greeted, hugged, and kissed, I hand’t actually processed how many kids had shown up. Suddenly I was glad we were making all the meat for me to use in different dishes later, that and I always over do it a little with the hostess thing. I don’t do part way well, I feel inherently embarrassed. My Momma’s southern upbringing leaching in to me? I don’t know…

All of there chairs were filled! No wonder there had been so much coming and going. I remembered being asked or chairs and as I look around I remember I had offered up my nice antique wood dining chairs. But the friends sitting in them were smiling and laughing, being gentle not leaning back on them or scooting on the cement. I wasn’t so worried any more. When I walked in to the group someone instantly jumped up to give me a seat and moved to a crate. Two of our Gfs had shown up too, so it wasn’t a total sausage fest.

Somehow as large crowd as we had it was like a big family, a big group of cousins… granted we were def sitting at the kids table still, but everyone was helping where they could and being respectful, chatting up people they didn’t know as well, getting people new drinks, talking in family neighborhood appropriate voices and vocabulary (mostly). We really have found a good few people to put our energy into. They are beautiful people now and I can’t wait to know how they are as they hit different stages in life that we def don’t dream of! Haha more nightmare territory right now;) I was still hostess, but I got the chance to sit down more than usual at a dinner gathering and I actually got to relax (which means getting to hold down food that I eat at the party, hell it means getting to eat at the party at all)!