Wednesday, December 27, 2017

On A Year of Changes

We never did get a Christmas letter or cards out this year. As shown in the prior blog, 2017 came in like an EF4 tornado and nearly tore our world apart.  We had Amber living with us, Owen was back at the bottom of the mountain when it comes to his battle with chronic depression and what the PKU does, and I was facing having to start on IV therapy to get the heart side of the Ehlers-Danlos with Dysautonomia back under control. I was at my physical, mental, and emotional limit on what to do.

Owen's finally seeking professional help again started to make a change. He was slowly coming out of all of the negatives, especially after being put back on the one depression medication. He's back working on his HAM radios and is talking about getting back into woodworking. While his job is still a major trigger, he's learning how to work with it. In April, I joined him in seeking counseling. Every other Wednesday, we drive down to UVA Behavioral Medicine together and go to our separate therapists. While couples counseling still really needs to happen, we've had trouble with finding someone who takes our insurance and also can work around my complex schedule.

That is because, in May, I was given a big promotion at work. I now don't just advise/manage 30 students, I also run our schools new community service and community involvement initiative. That meant researching and developing ways to bring more student and parent interactions to Bridgeway Homeschool Academy. The first step was making online clubs. I now spend every Tuesday running two Minecraft clubs for middle and high school students, and the 2nd and 4th Wednesday is managing our National Beta Honor Society club. There are also book clubs, which others are leading. It's been a great boost! Phase two will be kicking off in the spring, and I'm excited... but oh was it overwhelming for a bit. I also babysit my nephew on the Wednesdays I'm not in therapy, and sometimes that falls the same day as National Beta.

Other things were happening as well. My body and brain were "done" with some of the medications I was on, but we didn't really know what to do. It made for a long spring and summer. Very little, outside of work, was being accomplished, including the garden. I was back in physical therapy, this time for tearing up my shoulder blade in some really bad dislocations. I also had to start IV saline to stay hyper-hydrated and keep the tachycardia at bay. I wanted to write, had TONS of ideas and many posts written in my mind, but could not mentally function enough to do most of it. Now it was my turn to make a visit to Neurology (with a side visit to GI because the gastroparesis side was in a flare.) Neurology was quickly alarmed by how my eyes were not focusing properly, I had a slight tremor, my responses were slower than before, and I was upset over the constant weight gain, no matter what I did. They said I needed to quickly be taken off of two medications - one which helped with nerve pain and the other with migraines, both which caused the weight gain. We found a derivative of the migraine one to replace, but the nerve pain one just needed to be gone. The switch was made (with only two mini-neurological events, praise God!)

And I came alive again! Just like that. Boom. Yes, the nerve pain is a bit worse now, but I'll take it. My brain is no longer moving in slow motion. Creativity is back, so is ambition. I finished my second novel in record-breaking time, some days getting 10-12 pages finished. After four years of struggle, it was an amazing experience. We never realized how badly the brain side-effects had been! I re-edited novel 1 "Midnight to Morning" and re-released it. "Sunrise to Shadows" came out just 12 days ago, right in time for Christmas! I jumped right into writing book 3, because these characters will not be quiet, and my brain is letting me work. My job, which I had been struggling with since August, started becoming easier again (though I was appalled at the mistakes found during those months.) Despite the expected decline Ehlers-Danlos is causing physically, my brain is awake, active, and needing constant engagement once more. I'm loving it! Therapy has been helping get the emotions back under control and providing me with resources to work through problems as they arise.

I ended 2017 on a high note. It has been a mind-boggling year!

Sunday, January 29, 2017

On MDD and Marriage

This is going to be one of the most gut-wrenching posts I've made yet. Honestly, if this gets published, it is a serious act of bravery (or stupidity) happening. Maybe it will just be shared among a few close friends, maybe the link will show in Facebook. I'm not sure yet.

Owen has a mental illness. It is tearing us up. I am not strong enough. I'm lost as to how to help him anymore. It is a demon, a curse, a chemical imbalance combined with brain damage which has made home life so very difficult. I'm scared we won't make it. There. I said it.

Major Depressive Disorder with Social Anxiety Disorder came formally into our lives about five years ago. Owen was working in an abusive environment, and we thought the change in his behavior was due to that. Only, when he switched jobs it stayed and then progressed even more. I saw the man I love start to lose interest in things he once loved. Hobbies he had just started to thrive in were left to gather dust. Our conversations grew shorter as I spent more hours looking at the side of his head as he was more and more lost in his own sad world. Engaging him in meaningful conversations were constantly turning into disasters with his tone showing strain, voice louder, going from calm to rage in an instant. It was like living with a hurricane whilst being on a roller coaster. It was frightening and I wasn't sure what to do. It took a member of his family committing suicide, and Owen asking me to remove the guns from our house, before he first sought help. Medications were tried and failed. More were tried and we had some successes. For a time, he had a great psychiatrist who engaged him in behavior therapy as well. Then the psychiatrist left, his neurological issues became more prominent, and this new crisis became the focus. The new psychiatrist was an idiot who didn't understand the part PKU and brain damage played in his disorder.

It took us two long and painful years (and threats to contact patient advocacy groups) before a referral was made to neurology. By then, Owen couldn't walk without stomping, shook constantly, had horrible vocabulary aphasia and could barely work. Dopamine Reactive Dystonia (otherwise known as PKU Parkinsonism) was diagnosed, and Owen was put on dopamine. Feeling great again, he jumped back into HAM radio and quit his medication for the depression. At first it was okay enough, but he quickly regressed. This time, though, it was different. He was coming home from work, barely speaking, going to the computer, and I wouldn't see him until dinner. Even then, he'd engage for a few minutes only and then be back in his own sad world. I made attempt after attempt to get him to spend more time outside of it. This time, he'd act like there was no attention span. More than one direction or comment at a time and he'd get flustered and shut down. If I was too long in answering, moving, giving a next step, he'd get frustrated and shut down. He'd start to work on a basic task and if one thing went wrong, or I didn't fly to his side when he called for assistance, he'd shut down. He started blaming everything that happened on everyone and everything else. Over the past months an obstinate streak has started, and I have no idea how to handle any of it.

I've tried so many different ways to work around these things, but to no avail. He was insistent that it was ADD or maybe his thyroid or his PHE levels from the PKU (he has a wide selection of low phe foods to eat in this house at all times. I make much of it from scratch... yet he cannot "be bothered" with microwaving it.) I've heard that because I did something x years ago and it damaged him for life (the offense varies with whatever is currently setting him off) or someone said something ten years ago and he never could get past it. He'd say I didn't put the laptop away enough to spend time with him, even when I'd stop everything I was doing to sit next to him while he was at his computer or put my arms around him there and try to engage him in conversation, or I've kept it closed while we watched a show so he could curl up with his head on my lap. It was a cut on his finger which stopped all assistance in the house for a week. A small foot issue kept him freaked out and at the computer only for three months (recall I function with daily severe pain, dislocations and a heart condition... but, as he says, I'm "used to it.") Anyways, the story changes constantly. He'd change his mind or retell a story differently just to be the opposite, make it sound like I was lying, leave in the middle of conversations, or go to bed because he didn't get his way in something. The subject for digging in his feet changed constantly. I never knew what was coming through the door.

After speaking with genetics again (and going to patient advocates over the same dawdling by them) Owen had a neuro-psych evaluation in November. It isn't ADD. It is not his thyroid. It isn't even the Dopamine Reactive Dystonia... all of this is from the mental illness Major Depressive Disorder. This Wednesday he starts intensive behavioral therapy. If we can get psychiatry to call back (one referral Dec 26th and 3 follow up calls later and still no appointment) he is to start back there with a proper doctor and not a resident. They also recommended couples counseling. Owen told them I take the brunt of everything and shouldn't. We need that counselling...

Because I'm broken. I'm confused. I'm out of ideas. I'm about to collapse under the strain of what mental illness has done to us. Nothing I do is helping make progress with Owen. If anything, it makes things worse. If I ignore the behaviors and focus on his needs, it isn't enough for him. If I try to talk him through an issue, he gets upset or shuts down. If I work day in and out, going above and beyond... still not enough. If I use half of my paycheck on keeping a house cleaner because the state of the house is a trigger and I cannot keep up with it all, nope, still not enough because a scrap of food is on a plate or clothes are not folded. I'm going to the Lord in prayer constantly.

I miss Owen. I miss the man I married. I miss our conversations, our laughter, the hours cuddling, all of it. Can I continue here with the way he is now? Yes. I won't leave him. I'll fight with my dying breath to help him. I love him more now than ever, even with all of the pain and sorrow. It is so hard. So very hard. Yet, I hold out hope for the next phase in treating him, the next therapy, counselling, medication, whatever it takes. Even though it seems I can do nothing right, I must remember it is mostly the mental illness and not him. There is hope that, one day, we'll get this demon back in the box, and I'll once again see more glimpses of the man I know is still there. He'll get back into his hobbies. We will go back to more time together. One day, mental illness won't be tearing our marriage apart.

*Note* Please do not attack me or go telling family etc just because I've put this out there. Writing is how I survive. I have pages and pages of ramblings from these past five years. No one sees them. No one really knows. I'm tired of being in the dark, dragged along by what this disorder has done and wrote this out so those who I know love Owen and me so much can really know what is happening.*