I have songs that calm me when I am freaking out. Not gonna lie I have quite a few things that I flip out about. It really isn’t that hard to get me to reach my flip-out point is what it comes down to. I just don’t have a big filter and I am already dealing with so much internally that I feel over loaded as it is. Add in that everything I see hear and touch I actually feel. I can’t block out anything thing sensory very well. Eventually it all gets in. Pretty nerve fraying right?
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?
A+B=D That’s a phrase I tell myself over and over again in my house. It is part of how I am figuring out and growing in relationships and life.
We all come with baggage. What that means when it comes down to it is that it’s hard to learn new patterns in life from those we develop based on our experiences throughout life. (erroneous example: If a guy hits me every time I say the word dog, I’m gonna learn to stop saying the damn word).
That’s really what we mean by baggage.
When you have an experience over and over again; be it the way of a parent relationship imploding, a year in college that threw your life off track, an abusive relationship in college, or a health condition that got torn down by previous significant others… baggage is referring to the patterns that these interactions built into us.
Due to time after time of the same behaviors. A+B always equals C right? That’s what you learn. Every time your Mom comes home she asks how your days was and makes you cookies, it’s a wonderful experience, let’s say? Then if you came home one day and she wasn’t there no note, nothing, would you be worried? It’s like that! You always know what the equation is in each situation you’ve experienced before. When you are in a negative situation while developing these patterns then you’re going to look at the equation and reach the conclusion; a given of something negative.
It seems to me that most of us develop defense mechanisms to deal with these negative equations. Usually the defense mechanisms aren’t positive attributes for communication, for various reasons. Not just communication, but developing relationships, romantic or not. When you leave the negative situations behind it’s hard to learn to adapt to a different equation.
In our situation, my husband and I both had various behaviors that shutdown a conversation when we weren’t willing or ready to deal with the topic. Perhaps I shouldn’t say had, we still have these defense mechanisms, but when we were able to see that these things were happening we were able to start working on it. We use a variety of techniques from key words to phrases, to rules about situations before they happen. We had to teach ourselves with each situation that A+B doesn’t have to = C the equation can have other out comes (it isn’t always negative) A+B can = D. But this isn’t something that just knowing means it’s solved. Humans are never that simple.
When A+B started to equal D more often I believed that the equation could change. Then my Husband flipped out on me. He went very manic and crossed lines I swore I wouldn’t allow to happen to me… He ingrained back on to my brain the equation A+B= C (at least with him it always will now) and I’m working all over again for the belief that this equation isn’t always a true statement. I don’t want to run off any other man I love because I don’t believe it’s possible For the answer to be D.
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.
I’ve been playing phone tag with the OB’s office all day. They usually just leave a message. This time her message was to call back every time. I signed something at this particular office saying they could tell my info to me in a voice mail. They normally do! Telling me “it’s a little abnormal we want to see you again,” or “everything’s great, have any questions call,” whatever. But this time it was just back and forth. Come on guys, can you be more obvious?! If you are willing to leave a message telling me I have abnormal results then I’m going to ASSUME this particular situation is worse!
Well I got the call. Turns out the weird suspicions I’ve been having were right. I’m premenopausal. I’m 28 yrs old! It’s from the adrenal function issues I’ve had from long-term steroid use. They’re putting me on meds, oh but don’t worry, it’s all very normal (sure normal in women in their 30s or 40s to need this or just ME apparently) Blah Blah Blah she explains… All of these months of trying and I haven’t even been ovulating. None of it mattered. It made me cry. It really isn’t that bad. many women go through mild fertility assistance. But it just felt like one more thing my health was trying to take away from me.
I’ve always known I’d be a great mother. No matter how sick I get, I can take care of a kid. But now I might not have that option? For real?! That seems so surreal. But I guess the good thing is it’s still a might. We have a number of options left, starting with the Clomid I start in November!
It can be difficult to establish in my own head how I feel when I get bad news to do with my health anymore. I feel as though part of this comes from every few months learning something else was wrong with me for most of my life. Maybe I learned to just not cope? Perhaps I cope so well it flows over me? I think it is the case really. I go through all of the stages of coping so rapidly that most people don’t notice I had a problem to begin with.
**This does NOT extend to any other area of my life**
Instead this is why when I do encounter something that I can’t just let flow through me and go with it… I don’t know what to do. I shut down. I could be pouring myself into preparing for the eventual baby (which I have been doing for months), but I have such a hard time mustering the hope right now. I spent a lot of spoons/energy on hope these last number of months. I’ll figure out my way to cope with this, until I do, I remind myself I just haven’t found the next great thing yet.
Did I really just sleep 46hrs? That’s pretty extreme. I mean I rolled over, I got up to pee, I think people said hello to me… but I slept through everything.
I woke up at 3:00am with a million text and Twitter notifications and a rumbling stomach. I also now vaguely remember demanding Gatorade water at points. (I like to water it down, too sweet) I got to make myself soup that I know my Mom made and left in the fridge. As I wander into the hall way and turn on lights I notice that, shit’s changed!?!
Weirdest thing about sleeping this long? I went to sleep with the place a wreak. Don’t get me wrong it’s less of a wreak than it has been. I have been working on it, really I have! Also my amazing parents keep showing up and cleaning while I lie sick in bed. They tackled the kitchen the other day. It was sad on my part. This was stuff I know a typical adult my age can keep up with regularly. But it took the “cleaning fairies” showing up for my place to see the love I should be giving it. If only I knew how to conserve my spoons and spend them as soon as I get a few!
I have three different infections right now. Woot! That’s what I get for having fun for a weekend…
It’s not that I don’t have support, it’s not that everyone isn’t listening when I need it; but boy do I feel alone.
My friends and family all try to remind me that I have embryos AND eggs frozen. Most people aren’t lucky enough to have either. They are also reminding that this concept isn’t coming out of know where. I had already considered this as a possible outcome of my health issues as well as my medication side-affects. But Lupus has taken something from me, every step of my life. Step by step I go and Lupus follows behind snatching it all out from under me, since I was a child! I just didn’t want pregnancy to be another one of those things that Lupus took away from me.
I was talking to a friend who was recently diagnosed with Lupus about recognizing symptoms as they show up, telling them apart from other similar symptoms, and understanding if any of the symptoms are related.
One of the things she said to me, when we were talking about her symptoms, that reminded me of my first onslaught of a multiple symptom life was “… I can’t tell how cause my body is a mess.”
My brain hollered Hallelujah, you’ve crossed over to being a Lupie. Our bodies are our temples right? Well here is your temple and no matter how much we clean and dust OUR temple is a MESS!!
But this is the temple we live with; with Lupus. We may not be able to clean , but we can certainly organize our temples!
That’s where understanding how each symptom works in the network of your body’s systems becomes so important.
As it gets closer to August 25th my hopes for starting back to school this semester are dwindling. Even though I’m no longer on Cytoxan/chemotherapy, I still can’t seem to get my health back up to par for classes. I have no reason to go back to school if I don’t have the energy to make it through classes yet another semester. I’m not gonna lie, this is a blow to my self-worth. I know, I know, logically I have the same self-worth as before. But it just feels like one more thing that got stepped on by Lupus and I’ll just have to walk away and start new somewhere else. Currently I am maintaining my denial and am certain I will finish school… eventually. In the mean time I am still trying to hold on to the last wisps of the structure for my life I mistakenly thought would go as planned (way back Freshman year!), I have thought of a few things school-wise to turn my focus on.
I have a number of Incompletes that I need to finish for my major, bot to mention graduation. Instead of pushing myself, I will be focusing on two Incompletes for the entire semester. I don’t need to overload myself. On top of the Incompletes, I’ll be Petitioning the school to get my credits to Roll-over. The thing is… by the time I will be able to finish my degree, with the requirements for credits as well as the requirements for my health, I’ll have been “In school” for more than 10yrs!! Ouch! That was another blow to my esteem… it’s taking me more than ten years to get my Bachelor’s Degree:/ But I have certainly enjoyed the topics I’ve perused while attending classes on and off;) I certainly know what I want to do as a career, if I have the opportunity to work outside the home. With the way my Lupus is going, that isn’t looking to be likely! But I will always look for ways to try to get out there!
I woke up with a weird dizzy spell yesterday. Not my normal vertigo, but rather, everything was actually VISUALLY spinning and wouldn’t stop!! I was literally hanging on to the floor and walls waiting for everything to stop moving. Luckily my husband helped me take care of the dizziness. We are hoping it’s an inner ear infection and not a new Lupus symptom! My Husband is amazing, running around pulling out the right pills, getting me gatorade, and even handing me the pills in the order I prefer to take them. How sweetly observant of him, to know the entire routine, exactly how it makes me feel comfortable. But even with the quick Emergency Husband Response Team timing, I was out for the count all day.
This was a new symptom for me and not very much fun. I never find it very easy to deal with a new symptom. For one thing, the first part is figuring out if this is a symptom of the chronic illnesses or an outside issue. Then if it is indeed the Lupus (or one of the other syndromes/diagnoses) I have to figure out what the patterns of the symptom are. Potentially figure out a cause and/or treatment for it! Once I figure out how to treat or cope with the symptom itself I get a wash of “well damn, one more thing to deal with.” pouring over me. But I always keep going. I mean, life would get boring if I didn’t;) But in that moment while I am recognizing that I have some permanent new fixture of annoyance in my life… One that I will forever have to keep at the back of my mind, stay aware of, maintain/treat… I crumble a little. Just for a moment. Then I shake my head **Figuratively, please, no puking necessary** and I get on with my day.
How do you feel when you get a new health issue to deal with popping up in your life? Do you find health issues to be overwhelming or is it just one more symptom on top of a list you don’t notice? How about those of you without health issues, how do you deal with outside stressors that inch their way into your life?