Falling Apart or Falling Together?

The last couple of days has been a special kind of hell.

The kind that doesn’t really feel like a true hell but at the same time it does.  I’m just kind of here.  I feel hypomanic, I rated my depression at a zero yesterday, but the depression crashed in hard as I realized I was way sleep deprived.

I went to PHP and left from lunch because I was too tired to stay awake, I was getting too pissy and irritable and I couldn’t even keep my eyes open.  I feel judged and at the same time I’m judging everyone, not just there but everywhere.  It’s a symptom of my mixed episodes, I’m withdrawing.  Next is the suicidal thoughts.  It happens this way every time.

I went to my free meeting with the trainer last night.  First strike was her insistence that with enough exercise and physical health I could get off psych meds.  “That’s not how this works.”

Then the fat and size shaming.  Which I retorted with, “I don’t want to be small like you.”  She didn’t like that, she doesn’t consider herself small, and really didn’t like it when I called her tiny.  Fuck her.

Later she said “I thought you said you were a widow, you’re dating?”

You know what . . . fuck you.

It could be because I’m oversensitive and feeling judged anyway, but holy shit, don’t do that.  I deserve happiness and I’m so glad I have Wonder Woman.  I can be a widow and in love again.

Being over sensitive like this sucks so so badly because I feel like everything and everyone is trying to attack me and I respond in kind.  It makes life harder than it has to be but it’s not like I can stop just because I know it’s happening.  It takes time to get back out of this mood and in the mean time I want to isolate which is the worst thing I can do for myself.

I went to bed early and managed to sleep for 10 hours.  I woke up feeling drugged because of the amount of sleep but it was so so needed.  Two – four hours of sleep night after night isn’t enough especially with super full and emotional days.

Today I just want to crawl into bed and sleep more, but instead I got up, fed the animals, and soon I’ll get dressed and head to therapy before a full day of PHP, maybe breakfast with my girl beforehand.  Tonight I’ll either NSO or at least sit there and spend time with my derby people who I miss being around.

I’m tired of this fight.  I’m so so tired of the fucking roller coaster.  Sometimes I just want to demolish the whole fucking amusement park and let someone else clean up the mess.

But Parker already did that to me, and I’ll be damned if I’m going to do that to someone else.

The Pink Girl

Really real mental health post . . . also, will touch on what a day is like in the partial hospitalization program (php) that I’m in, because a few people have asked.

I have distinct periods in my life where I can put my emotions, or the feeling in my head, my mental health, with that period in my life.

The time period right I got disability, 4 years ago, was one of those times, that super low depression that wouldn’t go away. The void that never ended. I wasn’t sad, there was nothing.

And then there was this time last year, leading up to the 1 year anniversary of her death. So much was happening. I was focusing on all I had accomplished. Trying to push myself to keep going and to make it. Trying to pull myself out of the depression that had happened at the 1st of the year. Hypomania bordering on mania was happening . . those are the times that I say I feel crazy because my brain can’t keep up with my thoughts.

But what makes those times worse is that more than anything I want to be understood. The thoughts are going so so quick, and I’m making connections that seem perfectly valid (and may or may not be). And I feel like I can’t make anyone see things the way I see them.

And when I’m trying to explain my needs to people, trying to explain my illness in that moment, that’s even harder. Last year I knew that I needed stability, I knew that sudden movements and sudden changes felt like they hurt my soul.

I felt crazy inside and it came out in a jumbled mess. I needed gentle, and unfortunately, what ended up happening is that for whatever reason, the whole situation profoundly changed my relationship with someone and it has ended up feeling like another loss for me to grieve. I can’t decide if this one is my fault, or if I did the right thing by saying what I needed or if it just doesn’t matter, because, it is what it is anyway.

I’m glad that the new medications are slowing down my thoughts and helping me feel less crazy but php is still hard, hard work. It’s back to back 30-60 minute long groups with a 10-ish minute break between each one, and a 45-60 minute lunch in the middle of the day. There are about 20 of us in the program, split into 2 teams who mostly stick together.

The groups are everything from how did you sleep last night, and rate your pain/depression/mania/anxiety, when we first come in, to “what are your weekend plans” so that we have a plan set up before we leave on fridays, to traditional group therapy, and things like relapse prevention, medication education, illness education, etc. There’s also a bipolar/depression support alliance meeting, dual diagnoses meeting and a ton of other stuff I’m forgetting.

Great place, but I come home exhausted and still have a lot to do around the house and in real life.

Also, I went in yesterday and someone commented “You’re wearing purple, what’s going on?”

Fuck, less than a week and I’m already the pink girl.

Someone find me a new color!!!!

Smile through it…

One of the things that hits me over and over again as my memories come up, is not just how often we had shitty things happen, but how often Kidlet is smiling in the pictures I took of him . . smiling in the face of really shitty stuff.

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That really became apparent after the accident. He wanted pictures of everything, from the wounds to the Xrays, to the various casts, he had a plan at the time (and it needed to be documented for insurance anyway), but it meant lots of opportunities to have the camera out. We have so many pictures of him in various stages of healing, throwing a grin for the camera.

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And the truth was, he was laughing and happy through most of it. There were shitty moments but we found ways to be happy.

I talk about resilience and grit and how I have a sense of humor in the face of all this. I talk about finding the joy and laughing when I want to cry.

Sometimes I wonder which one of us started that, did I learn it from Kidlet, or did he learn it from me?

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I know he went through a lot and I know these smiles weren’t just for the camera. I remember the first time after each major thing where I’d hear his first real belly laugh. Mostly it was with his online group of friends through the computer or the Xbox, and I’d finally release the breath I’d been holding. By the way, these are the same friends he still has, some of them have been commenting on my posts and holding me up now.

But the smiles typically came within moments or hours. Even while he was still laying on the ground after the accident he smiled and cracked jokes. Even in the trauma room he was making jokes through the morphine . . .okay, that was drug induced probably. In the days after, figuring out how to get him into the house and how we were going to make it work, he was joking about how crazy our luck was. And smiling.

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We fell apart, we screamed, we raged, we cried, but we came back together and smiled.

We found the joy in all of it.

Balance.

Another really real, but really long, mental health post.

Kind of a word vomit thing happening here, but I need to get it out so it will maybe stop echoing around and spilling out my eye holes.

I went to an appointment to renew my transportation the other day. While I’ve gotten much better at riding buses, and I am doing much better in general, it’s still a lot for me to take buses on bad days or to something like work, or a stressful appointment, and then make it back home alone. This appointment meant proving to them that I am still disabled enough to need services. What I didn’t know was that they changed the system. I walked in with services, and with rides scheduled for ‘work’ the next day and found out that I was losing services effective the next day, for at least a month while they make a determination. This is while in the middle of my looking for a job and volunteering, still having multiple appointments each week, etc. That ride service is a large part of my independence. Yes, I know people will help, but I’m already getting financial help from people, now I’m in a position where in order to work or volunteer, or do things outside of my immediate area I’ll either need to accept more financial help so I can take cabs, or get help in the form of rides . . . losing independence when I’ve fought so hard to be “self saving warrior princess” is a huge HUGE deal. Especially when I did everything I was supposed to do. I jumped through the hoops, and I still lost, even though it may be temporary. There’s also the fact that it will take an entire month to find out if it’s temporary or permanent and that will effect what jobs I can get/handle and their location.

I’m in meltdown mode over this, while at the same time holding it together much better than I would have in the past. It’s this weird place where I’m able to melt down over something like transportation, instead of over something like, my electric being off, or being homeless. I know this isn’t that big of a deal. I have the help I need to cover this, it’s not an emergency really, but it fucking sucks because I’m moving forward and everything keeps knocking me back and it always FEELS like it did back when it was as big of a deal as the light switch doing nothing because power was turned off and my bank account was overdrawn and I had nowhere to turn.

I also recognize that I have the resources to keep this from being an emergency. I can still get food in my house, and medications and appointments, and part of my frustration is how PISSED I am that others that have it way worse are suddenly in the same position with no notice. This wasn’t how the system was 6 months ago when I was in the office last time with Kidlet.

What if I never move past this level of functionality. What if I can never make the 2 hour bus ride to a job, work more than 4 hours, then make the 2 hour ride home, because right now . . . I can’t do that, and on the days I try, I come home in tears. Even on the days I use mobility and work 4 hours I come home in tears and how am I going to work a paying job if they take mobility.

And then there’s why I keep fighting . . .

Yesterday I went to my ‘job’ and one of the calls I answered was a woman desperate for a tax appointment and we had none. I heard myself from 2 years ago on the other end of the line. She needed this appointment for financial and logistical reasons and there was nothing I could do. At one point she even said, “if you can’t help me, get mental health on the line because I’m going to lose everything.”

Holy Fuck . . . I’m setting tax appointments I should NOT be getting this call.

Except yes, I should be because I actually give a shit. She calmed down, I told her I understood, I listened . . .I told her I heard her, and I LISTENED. And I got it, she did what she was supposed to do with her back taxes, she called back weekly and she was still fucked for an appointment and she was out of time. When I got off the phone I talked to my supervisor both because I felt horrible for the woman on the phone and because I needed emotional support (I love my supervisor). I felt bad for younger me, for the days when my life really was that way, when every phone call ended with me feeling that desperate. I also felt bad for every call center employee who was on the other end of the line, I can’t imagine how they felt, and at the time I had no capacity to understand that no matter how many times I told them “I know this isn’t your fault, I just don’t know what to do” it didn’t make things any easier for them (if they felt things the way I do).

And even more important, my supervisor was able to help me find something, and I was able to call her back and give her an appointment, which is why I got that call, because I ended up able to help her, and that felt really damn good.

But I’m still here today, randomly crying because even the “feel good” post today about boundaries and self care and making sure you maintain sense of self, fucking hurts and reminds me that I’m yet again needing to ask for more help. Trying to figure out how to do that without becoming dependent on that help is a fine line that is hard for me . . . codependency was so much of my life . . . so much of my marriage . . .so much of my illness.

I refuse to repeat that. Balance is so fucking hard, and sitting with this and waiting while I figure out how to handle it feels impossible to me.

I need a plan and a way out, I need to know what’s next and this middle area . . .

Gah . . fuck that.

Power

After an amazing weekend away, I’ve realized that my anxiety in public has virtually vanished. There were multiple times that I went off completely alone in NYC in crowds, without a thought.

I went and retrieved a pizza when they suddenly couldn’t deliver it and throughout the weekend I had no issue figuring out the subway and actually enjoyed getting lost and missing stops and backtracking. It was a puzzle, a game.

I survived one of my worst fears a year ago, and so those people in that giant city have no power over me anymore.

But now those close to me have 100 times more power than they can ever imagine. And it’s power they don’t want, and power I don’t want to give them and it’s become a whole different kind of anxiety that I’m now battling. These trains are just as loud as the trains that used to tell me I couldn’t leave the house.

I know loss, and not in the “we can’t be friends anymore” kind of way, and not even in the “this isn’t working out” kind of way. We had a fight, a stupid fight over stupid shit and she went to bed and did not wake up. And while I know I had nothing to do with Parker’s death, I cannot quiet that voice that tells me I did . . . . it’s part of the process . . .

Because of that, the social anxiety that was always there is now 100 times louder. The fear that everyone else is going to leave gets louder and louder.

Every time someone is angry with me not only do I feel that tension and need to run from it, but I’m internally petrified . . what if I don’t have a chance to make amends. What if there is no tomorrow to say “I’m sorry, this was stupid” after they calm down.

Because of it I end up sometimes becoming incredibly irratic and overbearing and talking over them and even over myself to try and fix problems that aren’t even there because in my mind . .

If I don’t put out those fires I’m going to lose more people.

And i LOVE my people. I love my tribe. With every bit of my being.

I am both thankful for, and sorry to those who have been so close to me this past year. I know I am a lot. And I know that by now, you thought it would not be so much to be so close to someone who you have given so much to. And I do appreciate you, more than you could ever know. I wasn’t on even ground to begin with, and a year ago that ground disappeared. I’m quite thankful that I realized I could fly, but you guys have done more than your fair share of carrying.

I am intense . . and I am trying to get better. All month I have been trying to figure out how things feel so right in some ways, and so wrong in other ways.

One Year Ago Today. . . A Firefly Was Born

Losing Parker was such an inconceivable idea that in all of my over thinking, over planning ways, it was ONE thing I had never considered. Parker and I were so strong as an us, that I had never considered a tomorrow without her in it.

I had thought about what would happen if I lost a parent, and how I would react to that. It’s one of those things we expect to happen unfortunately..

For a few years, Draven spent 3 months at a time living in Maryland at his dad’s, and due to him one day turning 18, I’d considered a time when he would not be in my house every day.

But, for the larger part of 8 years, I had never once considered waking up and rolling over without Parker beside me.

We were not perfect. From the outside, we often got comments that we looked like a fairy tale, and parts of our relationship absolutely were. We fit, and we were meant. When you put two people with similar diagnoses that close together, it is either going to be great, or it’s going to be horrible. We were pretty great. We understood it, and all of the parts of it. When things got rough we rode it out together. We took care of each other in ways that not many others would. We saw our weaknesses as also being our strengths. It took a shit ton of work and the people we were when we met, were not the people we were at the end. Some of it good, and some of it bad.

Those who are closest to me right now have heard about aspects of our relationship that I’m viewing through the lens of grief and I’m thankful that I get moments of clarity that I can see that the lens is putting a difficult view on it. I _loved_ her. Every single solitary, pain in the ass piece of her. Every bit of her dual sided self. And you know what, she adored me with every bit of her being.

This amazing woman who is no longer with us made the decision to sell almost everything she owned. She even gave up her BOOK collection . . and not just any books either. In order to get on a bus with 2 duffel bags and come to Maryland, to marry my crazy ass and move into a homeless shelter.

She had a place to go in Florida. But we couldn’t go together. I said I’d come up here and get established and she could follow. But she wanted to come together.

I miss her. I miss who she was, I miss who we were together.

We used to say, “Where have you been my whole life” “Becoming the person you fell in love with”

And the thing was, we fell in love with each other over and over and over again because we kept growing and kept becoming new people together. And sometimes we’d get stuck and we’d hang on for dear life to each other when that happened. And unfortunately, I didn’t realize her grip slipped.

I miss her.

I said early on . . .that her death could never be in vain. I thought I meant that her suicide had to prevent other suicides. That it had to be some grand cause to change the world. I thought I was going to go on a crusade to fix everyone.

I didn’t realize that her death did prevent at least one other suicide. Her death did change the world. And I didn’t fix everyone. But her death has made a huge start in fixing me.

The day Parker passed, I wrote in a message “Now I know how important my degree is. Now I know how important the crisis text line is. She lost her battle, mental illness took my Love, it doesn’t get my life, it doesn’t get another fucking life.”

That day I realized that survival was no longer an option. I either had to stand up, or I might as well lay down beside her, because that’s where the path was leading. I have grown more in this past year than I had in the previous 20. I have achieved more than I have ever in my life.

I finally feel like I’m going to make it, but at the same time, even typing that line brings me to tears because it took her dying to make me realize I don’t have to.

I cannot help but mourn her being gone this past year. As much as I started building myself up to celebrate my achievements weeks ahead of time, I’ve been crying for those same weeks. But I don’t have to focus on that side of grief.

The other side of grief is the growth. The choosing to live bigger and bolder and brighter. It’s the pink hair don’t care, self saving warrior princess.

Thinking back to May of last year. I had home health coming 10 hours a week. I had a hard time standing long enough to cook, couldn’t cook then clean up the kitchen, could barely sweep a room, let alone the house. I had to stop and take a break when walking up the 2 flights of stairs to my apartment. Grocery shopping required a day of rest before and after. I was diabetic, had severe swelling in my legs. I was incredibly sick, and miserable, and barely living. I couldn’t be alone for any length of time..

In the first days and months after she passed every single thing from getting out of bed to showering to cooking dinner was celebrated with a shout of “gold star” from others in the house. Home health care was increased to 20 hours and honestly I was scared, I think everyone was. There was a lot of fears of what if . . . . . . what if I was next, what if I didn’t make it out alive.

But now an entire year has passed. I fucking made it. I didn’t only survive without my wife, my soulmate, the one person I never imagined living without. I also had a open hysterectomy causing surgical menopause and started with a new diagnoses that causes headaches and vision issues.

And I did more than make it, I’m thriving.

I quit smoking, and I’m more active than I have ever been. I’ve gone from struggling to walk ½ mile, to easily walking over 5 miles. I rarely go an entire day without leaving the house and actively look for reasons to get out multiple times a day. I don’t just sit on the computer all day.

I’ve signed in 158 times at the gym since the last week of August (55% of all days since the day I joined). I’ve learned to set mini goals and attain them, 5 minutes of elliptical was a struggle in April, this week I made it to 60 minutes and now I’m looking for the next goal to push for.

I started school each semester and even though I bombed horribly I did what I had to do to control the crash and burn. Even more amazing for me is that I picked up and tried again the following semester. I’m now on my third try and I will make it through this time.

Last spring I couldn’t go to a doctor’s appointment alone. When the ovarian cyst and then surgery happened I needed people with me. Now I attend them all alone, advocating for myself, and firing doctors regularly who don’t meet my expectations. I’m advocating for myself the way I advocated for Parker, and often more. I found myself a primary care doctor who will push for me to get the care I deserve. I’m taking a step back when needed and not letting medical care become a full time job, I’m prioritizing and not letting it become my life focus.

I’m also healthier than I’ve been in quite some time. This is a mixture of so many things. Not just the activity level but also lowering stress. Having more fun, not spending so much time focusing on being sick and what I can’t do and instead focusing on what I can. I’m no longer considered diabetic, my blood pressure is normal, my cholesterol is getting better. My resting heart rate has dropped 35 bpm into the 70s.

I’m riding local busses alone, I’m traveling out of state alone. I can depend on myself to get around where I need to go. When I realize that I’m beginning to depend on someone else I take a step back and make sure I don’t forget to depend on myself.

I’m setting up trips to places alone, without thinking twice about the fact that I’m going alone. I’m going to new houses with new friends without losing my mind about it being new. I’m planning vacations to NYC during pride weekend without worrying about being in the middle of a big city during a big event. I’m not letting anxiety control my life, I’m dealing with it when it comes up instead of letting the fear stop me from trying.

I searched out and started going to meetups alone, including walking away from ones that didn’t work for me.

While I’m not sure that I’m ready to date, I’ve put myself out there and made a profile on dating sites, mainly looking for friends but being open to options. This allowed me to step back and figure out who I was separate from the “we” that I had identified myself as part of for close to a decade, but, going beyond that I’ve actually met people in person, and I’m developing new friendships.

I’m becoming more confident in who I am and letting myself be that person.

I got on the back of a mother fucking motorcycle and I went sledding.

I’m wearing what I want far more often than not. I spent a lot of years trying to blend in and hide. While I had changed my hair, I was still wearing dark colors and long loose skirts trying to avoid people noticing my body. I am me, all of me, and that’s this big, bright, bold manic pixie pastel goth kind of person. Society doesn’t tell me what I can accomplish due to my size, I leave people in the dust at the gym, so society doesn’t get to tell me what’s appropriate for me to wear.

I have been taking pictures and posting them, and it doesn’t matter how perfect they are.

I realized that I will fail and I will fuck up and I learned how to dust myself off and pick myself back up. I’m learning to forgive myself, I’m accepting that it’s okay to be a work in progress and a beautiful masterpiece at the same time.

I became a Self Saving Warrior Princess.

I miss her. I miss her with all that I am and every ounce of my soul. I miss her laugh and her smile and that little wink she’d do when I was losing my mind and she’d catch my eye when no one was looking. I miss her.

I don’t miss who I was. I didn’t have a choice but to grab this new normal and run with it. We don’t get to go back, we don’t get do overs. I don’t miss the old me, and while I absolutely want my wife back, I don’t ever want to forget what she taught me by losing her battle. I don’t ever want her death to be in vain.

Always and Forever, Forever and Always, In a different sort of way. Miss you like mad fucking crazy my dear wife, my dear Parker.

Thank you for being my firefly.