Please Read this...
Hello out there. See? I am still breathing. Somedays with a few coughs and wheezes but I'm still getting up every morning.
I nearly closed this site's doors a few weeks ago. The idea of trying to bring it back felt too much. It seemed like a task too great for me to manage on my own. When I learned to code websites I learned in notepad and had to hand type out each line of code. Now the things designers can do is amazing, and WAY too much for me to just pick up and learn on my own. At least not easily anyway! I just didn't think I could face doing it half assed.
So I'm going to be trying this; I'm going to try to do it through wordpress. Wordpress has come a LONG way since I first looked at it years ago. I am trying to learn it right now, slowly, very, very slowly. It's coming along. The site won't be pretty for a while, but it will keep breathing too.
Thank you for not giving up on me when I am/was/am ready to give up on me.
The original, what the hell is going on post is below but I recopied the link to the main page closer to the end of this here. And if you want to, you can keep an eye on my progress here: http://sapayne.com/superbug/
One of the hardest things for me to do is write about myself. I've been hiding in fiction since I was little. Fiction is safer and anyone reading this that knows me even a little bit will see fragments of me in the stories I've written. Sometimes it's my hopes of who I wish I were, fears of who I am afraid I am or things that I know I could never be. It's easier and safer because the characters have been my only friends for so very long.
Generally, I don't consider myself a strong or brave woman. I am quite cowardly actually, easily wounded by rejection and anger. People who can stand up on their own I admire so very much because I don't feel I can ever share that. I'd rather run and hide, give up and slink away, than face my mistakes and failures. It's not the best option but, for me, it's been the safest. It's always been better to not fight and accept my own internal criticism and mocking than to risk having anyone else confirm it, rightfully so, and say the horrible things I say to myself aloud.
I don't want to slink away this time. I can't say I won't slink away over other things in my life because I am a coward and the habits of a lifetime are so hard to change. If I'm going to stand and try to pull my life back together you deserve to know what's been happening.
Mental illness in a variety of charming shades and hues runs in my family. Most are depression and anxiety issues but there are a good sprinkling of drunks and abusers as well if you shake the family tree hard enough. In my family, in my childhood, it was never spoken about. My mother has depression issues, OCD and agoraphobia, which, if you know about these conditions, you know are all sort of the same control anxiety problems wrapped up in different paper. My father didn't drink every day and he was never abusive, none of us were ever hit or hurt, but there is no such thing as a drunk that doesn't hurt his family in some form. These two things, along with other deeper, more painful and personal, things were never discussed.
I first started showing signs of depression at a young age. I remember sobbing wishing I were dead when I was about seven or eight. I remember an adult telling me that some people just cry more than others and leaving me alone in a room sometimes for hours on end when I should have been in class. I was thirteen or so and no one ever thought to ask me what might be going on or thought to mention that I might need help. Help was a dirty word. It was a threat. If you don't straighten up we'll have to take you to a doctor like so and so and what will people think about you then? It was a statement of shame and I retreated away from people and deeper into my fiction.
As a teen and young adult I did some stupid things, got hurt a few times but was too closed down to even really rebel. I learned how to fake it and learned not to speak of things.
When I met my husband my longest relationship had been three months. I'd never dated anyone that had actually cared about me. When we married I made him promise me that he wouldn't let me become my mother. I know this is a fear for a lot of women but this wasn't just the I don't want to give up my dreams or become bitter or angry. I was asking him to please, please don't let me go crazy. As small as that promise was I was asking for help and it was the first time someone in my life heard me.
From many failures comes success. My husband and I have built a life together and sometimes we fell flat on our faces and lost everything and that's lead us to being where we are right now and I wouldn't change a thing about the mistakes we've made. We own our own small store. It's doing modestly well given the state of the economy. We aren't starving poor anymore. But this has changed my life. I can no longer hide in my office and not risk seeing anyone, interacting with anyone, or be hurt by anyone.
If you've been reading for awhile you'll already know that things have been rough the last few years. We've buried both of my husband's parents and a half dozen other relations. There have been illnesses, both his and mine, finally diagnosed and treated to various degrees of success. I'm on year five of living with the knowledge that my body is slowly sliding sideways. I have ehlers-danlos syndrome which is a fancy way of saying that my connective tissue isn't formed right. My skin is fragile and growing more so every year. My joints slide out of place with far too little pressure. Some days typing is an agony, other days sitting is or standing or walking or coughing. Coughing causes my bones in my low back to slip and slide and that hurts quite a bit. I think my bitterness at facing that this is only going to get worse without ever being fatal came out in Epi. It isn't just the thought that I might have to consider a walking aid by the time I'm in my forties or that arthritis causing my joints to stiffen is almost a treatment, still painful but less dislocations. It isn't just giving up the idea that I won't ever hike the Appalachian trail or learn a sport or even have a day when nothing hurts. The most difficult thing I've given up is the idea that I shouldn't have children.
Mind you, not that I can't. Many women with EDS have children but there is a fifty fifty chance of any child getting my screwy genes. Beyond that fear it would almost certainly do lasting, serious harm to my body and progress the damage faster. I'd never really thought about how badly that would hurt, a hurt not from any physical pain, to give up the idea of being a mother. As with any chronic illness acceptance arrives in scattered fragments and ebbs and flows. On most days, now, I'm okay with it even if I want to whine about it sometimes.
Two years ago, almost to the month, the husband said I needed to get help. He didn't mean because of my joints. He'd remembered his promise to tell me if I was slipping into depression the way so many in my family have. I couldn't see it in myself. I was having bad days but that wasn't uncommon. I blamed it on the external chaos around us. Running the store, dealing with illness and death, trying to fit into a work environment where I had to deal with both co workers and customers when most of the time I don't even know how to interact with myself let alone a stranger. I chalked it up to being overwhelmed by it and didn't see how bad I was becoming.
We had a conversation with my doctor. I had agreed that if the husband felt I needed medication I wouldn't fight him about it. When I started talking to the doctor, a man I trust and who I've always tried to be honest with, he agreed as well that I should be taking something to help.
I'd like to say it was a light bulb going off moment. That suddenly the clouds parted and relief filled me because after thirty two years someone had seen how much I'd been hurting and was going to try to help make it go away. I want to say that but it would be a lie. All I felt was embarrassed and ashamed. I felt like some dirty secret that I'd been struggling so hard to keep hidden had been uncovered and exposed. I felt like I had failed because they were saying I was unable or incapable of keeping myself together. I felt like I'd let myself and my husband down. I felt broken in not just my floppy joints but in my mind as well. I had promised that if they felt I should do it I wouldn't fight against it.
I started on an antidepressant that week. I'm not against them in theory but I wasn't sure I wanted to be taking a pill to help my mood. I believe in depression and melancholy. I think, as humans, we need darkness and light, despair and delight. I think we should have low moments as well as moments when we feel like we can soar. I didn't want to medicate that away. I took the pills with a fear of losing all of that but I took them.
Over the course of a few weeks little changed. The meds took away my desire to eat. I like food but two or three bites and I was feeling stuffed. I lost weight. Which isn't a bad thing since staying at a healthy weight helps my joints but I want from being a size twelve to an eight over a few months. My slow drop of weight, I had been up to a fifteen jeans when I was told about the EDS, accelerated. Not a bad thing but I like food and it worried the people around me. That leveled off after a few months but what happened was odder than dropping a few pants sizes.
One day, a month or so after being on the antidepressants, it occurred to me that I hadn't had to talk myself out of killing myself for a few days. For the first time in my memory I hadn't had to come up with a reason to live. I didn't feel different but the need to end myself was nearly gone. I had always assumed most people were like me, that they just were easier at coming up with reasons for living. Generally I would promise myself that I could do it tomorrow. I didn't have to do it today because the option wasn't going anywhere. It hadn't occurred to me just how often I struggled with just getting through a day until I didn't have to any longer. Some of the emptiness, the hollowed out feeling, I'd known my whole life was just gone.
For the first time in my life when someone made me angry I could feel anger instead of crushing tears. For the first time I thought I might actually be able to do things well. It sunk in slowly how sick I had been as I got better. It didn't happen over night but it shocked me what to feel almost normal. I stopped hurting myself. I stopped feeling totally worthless. I started to get better.
Until it stopped.
I don't know about antidepressants because no one in my family gets help. It's a taboo subject for my family. I didn't know that dosages have to be tweaked or different medications have to be tried. They increased my dosage a couple of times and each time it disrupted my life but those days where I was almost normal were worth it.
Until it came back again.
This summer I slipped again. The medication I was on wasn't helping enough. I started finding myself saying things like I'm just too tired. Work couldn't get done because I was too tired to focus. My dreams, which have always been vivid and often disturbing, became nightmares and made me physically exhausted as well. I found myself not able to complete even small tasks and writing took forever. What I used to be able to do in an hour took a day. I hated myself for that.
That spun things out of control. The less I was able to do, the fewer words I could get out, the worse I felt about myself. The more embarrassed and ashamed I felt. The more I felt like I had failed, because I had. Only I didn't see it again, I was falling backwards, tumbling without any means of stopping my fall.
After a few panic attacks, attacks that had all but disappeared when the meds were working, the husband said that we had to talk to the doctor again and get the dosage changed again. I didn't want to. I thought it might be seasonal or a rough patch or something. When we spoke to the doctor and I told him that I was fine but I was just so tired I broke down into tears. I was crying to my doctor trying to express the emptiness I was feeling again. It was easier before I had been given a glimpse of what it felt like to not hate myself everyday. To have been shown what I could feel like and have that slip through my fingers was worse than never having felt that. It felt like I had been given a chance and failed at it. It felt like I had personally not been good enough to get better.
I guess that's a silly notion. I wouldn't think that way about any other illness but this didn't feel like an illness, it doesn't feel like one. It feels like a weakness. It feels like if I just focused more, tried harder, the medication would work but because I hadn't it stopped working. Admitting that, saying it aloud was impossible so I just cried and said I was tired.
I'm very lucky for my husband. He was able to say the words I couldn't. He was able to tell the doctor that my panic attacks were back, that I was slipping away, that I needed help.
Instead of a dose change the doctor wanted to try a different medication entirely. This is something I've never done before. I was to cycle off the old one while taking the new one and over a length of about a month transition from one to the other. I agreed because I had promised to accept help when I needed it.
I can safely say I will take the pain of a hip slipping slightly out of it's socket over the weeks that followed.
The fall has been some of the most difficult weeks of my life and its a struggle to type these words.
The depression got worse, a lot worse. The empty hollowness I'd struggled with returned. I stopped being able to do almost everything. Waking was an effort, getting to sleep caused a panic attack. Dreams became nightmares and the images would follow my thoughts all through the day. I became so easily overwhelmed by people and things that I would literally shatter. People making eye contact would break me down into parts. It's not something easily explained unless you've felt it.
Panic attacks would hit me so hard that I would stop moving, stop being about to speak. Generally I would be curled up in a ball on the floor of our bathroom. I tend to seek out small places with limited doors or windows when I'm really panicking. Several times I would freeze so solidly that with the shaking of the panic I actually collapsed and fell down. That made the joint pain worse which made me feel worse which fed the depression.
I felt like I was going crazy. When the husband mentioned holiday gifts I asked for sanity. It was a joke but it wasn't, not really. In my panic I would hurt myself. I used to hit myself because my clumsiness makes explaining bruises away very easy. Now when I hit myself my wrist slips out of place if I use any real force. I say this with honesty and shame. In the last weeks I've slammed my head against the wall hard enough to raise bruised welts. I've cracked objects into my head and pulled out my hair. I beat myself with any object of any solid weight that was close at hand. I cut myself. How I didn't do serious harm to myself I don't know because in theory a box knife and a rotary cutter blade should have cut my flesh like a knife through butter. A combination of slightly dulled blades and skin that stretches too easily saved me from the ER. My husband seriously considered having me committed and one night when I was huddled in a corner lost in my own pain and fear, he was honestly afraid I'd gone and jumped off the bridge behind our store.
It's sounds so stupid and dramatic to say it now but at the time, in those moments, I could no more have not done those things than I could have grown wings and flown. I knew it wasn't normal, it wasn't sane, but it was the only way I had to cope. I can truthfully say that if I had died I wouldn't have cared and maybe even have considered it a blessing because my mind didn't feel like it belonged to me. I was frightened of the thing I became in my panic and pain and for a time made my husband guard my medicine bottles because I was a breath away from just swallowing them all.
I didn't want to continue and I didn't want to live like that. Worst of all, I didn't want to put the people I loved and cared for through it. In my head it would have been a blessing to them to have me kill myself and stop being a bother to them. In my head everyone would be better off without having to deal with my stupid craziness. I felt like a broken burden with no value or worth. It was bad. I was bad. I didn't feel like I was worth fighting for. My husband never stopped fighting. Even after a long day, tired and exhausted himself, he'd sit on the floor of the bathroom and try to understand why I was curled up and sobbing even when I didn't understand it. He's the one that called the after hours doctor and the reason this new med was upped in dosage.
One extra pill, one taken in the morning and one in the evening, changed things. It took a few days but the craziness slowly started to retreat. There were still rough moments but they were easier to control. Fragment by fragment I felt more like myself but I swear it was some of the worst moments of my life and that's not just words. I've always valued my mind, my thoughts, my internal worlds of stories, as my greatest strength and this fall that was taken from me. I know logically that it made me sicker to, hopefully, make me better but at the time it wasn't worth it. I think if I'd had to go just a few more days I might have lost what shreds of control I had clung to and done something with lasting consequences.
But I didn't. I'm ashamed to write this. I'm embarrassed that I could lose so much of myself. I struggle with knowing that I needed the people around me to watch me so I wouldn't hurt myself. I don't like that they would notice the start of anxiety and panic before I would. I hate that I'll be stuck with medication for the rest of my life. I hate that I lost so much I've worked for.
I was very proud of this site, of my stories. I know they're just fluff but I like to think this fluff, my fluff, means something to someone other than me. In the hope of gaining some stability, in the promise of getting my brain chemistry balanced so I don't feel worthless and unlovable and useless, I've lost everything I've worked hard for. It isn't about the stories being paused in my head but your trust, your concern and the gift you have given me of allowing me to write for you. I'm ashamed that I've lost that and I want to slink away and hide under a rock and disappear.
I'm not going to do that. This story has been painful to write because it's not fiction and it's me and it's skinned me bare and left me vulnerable to your judgment. I don't offer this as an excuse because there is no excuse for my failing, only as a reason. I ask for two things.
The first is that if you see any of yourself in this, please, please, don't be like me and stubborn and scared, ask for help. Keep asking until someone hears you. I'm trying to let go of the feelings of shame and failure that I feel. Those around me say there is nothing to be ashamed of but it doesn't feel that way. Things not spoken of gain power so I'm dragging all of this out into a very public setting. If you're struggling too drag it into the light. Get help. Even if getting help makes it worse for a time before it gets better, do it. You are worth it. There is only one you in the entire history of the world. The irony is I believe that. I believe we are all beautiful beings with our own voice, our own gifts and that we're all worthy, even the crabby, grumpy awful people. The trouble is I can believe that about you to the core of my soul but struggle to even begin to apply that same acceptance to myself. Maybe that's the imbalance in those stupid brain chemicals but I'm being honest here.
I tried to be as blunt and truthful as I could be because while it makes me frightened to share this, maybe just one of you will see something in it. If this was anything else wrong in my body I wouldn't feel so much like a failure. No one says if you just tried harder your body would make enough insulin and you wouldn't be diabetic but I still feel like if I just was stronger, smarter, better, more worthy, more whatever, I wouldn't have fallen so apart. It sounds silly typed out now and, at least for me, it's always been more difficult to forgive myself than to forgive others.
Under this same request. If you have someone in your life that you feel needs help, please, ask them if you can. It's not easy. My husband has struggled because watching someone you love hurt themselves when you can't understand the reasons behind it must be maddening. You don't have to understand it, just be there for them. It might not even make sense to the one you care about either but being so depressed, so filled with panic and fear that the only thing that stops it is something external (I hurt myself, maybe your person drinks or smokes or insert hurtful behavior here) doesn’t have to make logical sense. If you speak about it you almost have to take away the shame of it. It's a small break in the horrible cycle of self loathing and depression but it's a break. If you can forgive them when they can't offer the same to themselves you're doing it right. Just please, say something. I might not be here writing this if my husband hadn't said something and gotten me help. I know I wouldn't have the hope of even a day or two where I don't have to struggle to not hate myself. And geeesh wasn't that hard to admit!
The second thing I ask for is your forgiveness. I'm sorry. I have failed. I can't make it better because I can't go back and not screw up. I just ask to start again. There will be an email address below this. If you are or have been a member this past year when I've lost my mind and gone a bit crazy, I have failed you and I am so very, deeply sorry. Email that address with your user name or the email you used to sign up and I will put time on your account. I also ask that if you're on the current rate that you cancel it as I'm going to be dropping the subscription price down until I know I can get back to some stability and regularity. I might have to start a new story while I slowly finish Kaze and Kelly's tales because, at least for right now, those stories echo my weakness and failings. Please forgive that. I don't like doing that but I want to get writing again. I hope to earn back your trust and be allowed to continue to write for you.
Again, I am so sorry, deeper than any words can say. Please, if you can, forgive me and let me try to make amends.