Inconsistencies

It’s funny how my thoughts and opinions can be so different from one moment to the next.

I like raisin bran. I hate raisins. I know for sure I’m worthless. I fight for the things that matter to me because I matter. I’m seeking out adrenaline. I want nothing more than the safety of my corner of the couch…

It drives L nuts that she thinks she finally has me figured out, only to realize what she thought was accurate, is opposite to what I’m expressing in the moment.

They’re not all hugely drastic inconsistencies, but they are there… and they are enough to throw people off when they notice them.

Sometimes I wonder if my dissociation isn’t more than just spacing out. I know Dr C and I have had this conversation a few times, but right now I can’t remember what she said about it…

Part of me knows everything’s just an elaborate story because I’m just a bored teenager. I have a really active imagination. I can get lost in the books I read. I can picture what they talk about. I can feel the atmosphere, hear the sounds. It’s like watching a movie, but in my head… and the smells… they’re so real. Only I know I’m reading, so… I have a very vivid imagination.

When I was younger, I dreamt a huge white stallion visited me at night. He came back because of the horse shoe I found while playing in the backyard. He promised to keep me safe… it was such a realistic dream, but a dream none the less.

When we moved from Canada to Florida, I stopped talking as much. Before, in school, I would always get in trouble for chatting with my friends. Then we moved, and it all seemed pointless. What good were friends if you’d lose them anyway? And even if I did have friends, it’s not like I could talk about stuff. “You don’t talk about family business to outsiders”.

So I didn’t talk much. I listened. I became the good girl who didn’t talk much, and almost never got in trouble (there were two times, but i only really got in trouble the first time. I forged my dad’s signature on a note he was supposed to sign acknowledging that I missed a homework assignment. The teacher got really mad. She didn’t care that I begged her not to tell my dad; that my mom would sign the note, just don’t tell dad… she told him anyway. She thought I was being a brat about it, and wanted me to learn my lesson… joke was on her. Dad taught me how to properly forge his signature so next time I wouldn’t get in trouble. I cried that whole day, I was so scared. I didn’t talk the rest of the day in school… I learned my lesson, but I don’t think it was the one she meant me to learn. I thought he was going to kill mom he was so angry at her (because I embarrassed him & made him look like a bad parent). I can hear them fighting. I can hear her screaming to stop, to get off of her. But they weren’t fighting, they were just having “a discussion”…

It’s all a lie. I blow things out of proportion. That’s not what really happened. Nothing happened.

I used to read so many books that they refused to buy them for me anymore. I would get so lost, time meant nothing. Hunger meant nothing. Bodily sensations meant nothing.

I would devour a book a day, sometimes more than one.

He would tell stories to show how smart and learned he was. He spouted theories from physics and math and psychology and philosophy. He wanted to make sure we knew them, so we could make sure others knew we were better than them. No one was as smart as us, or as special, but he was specialest of us all, and smartest… only blood family mattered. The people who married in, or weren’t in his immediate family meant nothing; they were interlopers. They weren’t one of us… but no one was as worthy as he was. He deserved everything, and people should be honored that he paid them any attention at all, especially the interlopers… no one was as special and wonderful as he. Everyone outside the family was a stupid imbecile who didn’t know greatness if it punched them in the face. Everyone should do exactly as he said, because only he knew what was right and wrong, good and bad… and never talk about what goes on at home with anyone; can’t tarnish the family’s good name. Can’t bring him shame or embarrassment, or you get in trouble… mom got in a lot of trouble all the time. Anything that went wrong was her fault, and she could never do anything right. “How dare you give away my money?? MY money, that I slaved in a stupid foreign country alone for months for?? HOW DARE YOU?!”… “it was to your own kids”… “I DON’T CARE! IT’S MY MONEY. ALL OF IT!”…

I don’t want to remember the rest…

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On using psych meds

… that Sarah Silverman tweet got me thinking…

There’s so much info and support out there for people taking meds, but nothing for people who react badly to meds.

I’m not sure I ever really talked in detail about my struggles with psych meds.

I tried them briefly in college, but came off of them after a short time (can’t remember why, or how long I was actually on them). Then, 4-6 years later, I was convinced to try them again. It was against my better judgement, but my therapist at the time was adamant that I needed them. I wanted to trust that she had a less biased view of things than I did, and that she was more knowledgeable about it all than I was. I battled her about it for several sessions before I caved and agreed to try them once again.

I had trouble finding a psychiatrist I felt comfortable working with. I must have cycled through 5 or 6 before I found one who I felt listened & cared (read: didn’t try to push the same meds I reported as having not worked when I tried them; wasn’t cold or condescending; sat with me for more than 3 minutes before handing me a prescription). Sadly, she moved out of state after about 3 months, and my search began again.

I really don’t remember much of the details at this moment, but I do know at one point I was taking roughly 15 different meds up to 4 times a day. It started with one med, then another med to combat side effects, and another to augment the first, then another to help with side effects from the one helping with the original side effects, and so on.

The meds didn’t work for me. I kept getting more depressed, more anxious, and more suicidal. I cycled in and out of hospitals. Each time, they added meds, or switched them out, or increased doses, or all of the above. None seemed to help.

They started blaming me for complaining about the side effects. I was called willful and resistant to treatment. I was told I was being manipulative; that I didn’t actually want to be helped; that I was enjoying the depression; that I was not trying hard enough to get better. I was told I would never be able to live without medication; that I needed to accept it as a part of life… at one point, doctors told me that I would never be able to survive on my own because of my level of self-sabotage.

I was seriouslly depressed, constantly anxious, extremely impulsive, and actively suicidal 90% of the time, not to mention my mounting ptsd symptoms (an enormous difference from my demeanor when not on meds, but few people had seem me prior to starting them by this point. Even I was mostly convinced that I would certainly die without meds (which was honestly part of what prompted me wanting to stop them. At least if I managed to kill myself, the pain would end)).

During one of my last dozen hospitalizations, it was strongly suggested that I not be released back to my home, but rather permanently be sent to a residential facility, as I was an inherent danger to myself. The doctors were shocked that I had survived this long. Even less believable to them was that I had a successful life and career prior to my most recent hospitalizations. I had held down a full-time supervisory position, as well as 3 other part-time jobs up until that final year on meds. I would be hospitalized one week, then return to work as soon as I was released. I attended intensive therapy programs during first shift hours, and worked in the afternoons. I taught trauma informed care workshops. I attended professional trainings. I was very high functioning professionally even as I was crashing personally…

I was lucky enough to have family and friends on my side backing my insistence to receive more intensive treatment (mind you, this was 4 years after I started meds, and roughly 40 hospitalizations in by that time). I knew I was metaphorically drowning. I knew the treatment I was getting wasn’t sufficient (most psych units, even in psych hospitals, don’t offer therapy so much as physical containment), but I did not totally know what might actually help. Dr C was a great resource. She helped me figure out that a specialized trauma program would likely be beneficial. She’d also advocated strongly with the doctors at the local hospital to send me to a more intensive program. Between her, my family, and my own insistence, I was finally admitted to a trauma clinic, The Center at PIW.

There, I finally found some meaningful & intensive help. Despite reading my recent history, the psychiatrist agreed to help me come off all the meds. By the time I left there 2 weeks later, I had tapered off most of the meds. Those last ones I was able to come off of with the help of the psychiatrist at the day program I attended following my discharge from The Center.

The first day back to the IOP, the staff commented that I was doing the best they had seen since I first attended there 4 years ago. They said I seemed clear-headed, articulate, calmer… they asked what changed. When I mentioned I was tapering off the last 2 meds, they seemed incredulous. After all, how could the person who was so debilitated for so long be better not taking the thing they believed was her biggest hope at normalcy? Initially, the psychiatrist was ready to refuse treatment because I was refusing to take medication again, but upon seeing how differently I presented, I was allowed to stay in the program. I was, however, requested not to mention that I was no longer taking any regular psych meds. They claimed it was to avoid compliance problems with other patients in the program. I guess I was seen as an oddity.

After my shortest time “completing” the program (3 weeks or so), I was deemed stable enough to graduate. I returned to only doing individual therapy & the trauma group with Dr C.

Since that time (2011), I’ve only tried psych meds 3 times. Each time I noticed the impulsive drive to kill myself return in less than a week’s time. They faded just as quickly once I stopped taking the pills. The depression still hits hard, but suicide is no longer my first and only thought on how to deal with it. I’m also better able to avoid cutting (actually, I rarely think about using it as a coping tool these days).

Doctors still react with shock and disbelief when I deny being on psych meds despite my diagnoses. I’m pretty sure most believe I’m lying when I tell them I only take something for asthma and stomach issues. Even the neurologist did a side-eye when I mentioned the only 2 meds I take aside of the pot.

In a society where pharmaceuticals run the medical industry, and they are the be-all & end-all of mental health treatment, not taking meds is seen as going against medical advice. Hell, we take away people’s basic human rights when they say meds don’t work so they’d rather not take any. They are deemed an immenant danger to themselves, and not competent enough to make rational decisions… all because something we are indoctrinated into thinking is the only way to treat mental health issues harms some people more than it will ever help them.

I can’t tell you how much I loathe the phrases “you just need to find the right meds or combinations),” and “the benefits outweigh the side effects.” Sometimes there is no right combination, and the benefits definitely do not outweigh the side effects (because for some, there are no benefits). I wish medicine understood this…

Maybe we need to start another movement; that sometimes meds do more harm than good, and there’s nothing wrong with choosing not to take them. There are several notations in my records that insist I’ll die within 6 months max if I were allowed to stop all psych meds, yet here I am, 7 years later, more stable than I ever was on the meds. Oh, and check it out, I’m still alive! Who knew that was possible?! 🤔

It’s time we stop forcing everyone with mental health challenges into a medication routine. They can definitely be helpful for some, but we also need to acknowledge that they can be detrimental to others.


update on Neuro appointment

I had an appointment with the neurologist yesterday morning. He took history, did a Neuro exam, and did some nerve testing on my arm. I have to go back tomorrow morning for the same testing on my legs tomorrow… I’m kinda anxious about the testing on my leg. It’s not rally painful or scary, but I expect it to be triggering. He’ll use mild electric current and sensors to test nerve conduction (there’s also a needle part, but I’m trying not to think about that).

There are two potentially triggering times; 1) if he tests nerves above the knee (I’m thinking about insisting that the testing remain below the knee. I don’t really care if it doesn’t yield compete results. My goal is to avoid flashbacks and panic while he’s got needles stuck in my muscles). 2) later tomorrow night when the points he tested are sore and cramping. With my arm, it felt like someone was pushing their thumb into my arm at those soots. It was uncomfortable, but i could talk myself out of panic because it was just my arm. I’m not confident I’d be able to do that if i felt the same on my thigh. I don’t really think the leg test will show any results different from my arms, so there’s no need to risk a flood of triggers and flashbacks, especially with Dr C still on vacation for 2 more weeks. I know I could talk to her fill-in about it, but that would only come after a weekend of dealing with it… I’m not really up for that right now.

Is that a stupid choice in terms of diagnosis? I dunno. So far, everything’s come back normal except for the d-dimer test. If needed in my arms aren’t damaged, there’s little likelihood nerves in my leg are. After all, my arms often hurt more than my legs, and I’ve not experienced the same weakness with them. So, yeah. I think I’ve decided to insist that he keep the testing below the knee.

He’s also ordering a special blood test, though I forgot to ask what he’s testing (will do that tomorrow).

I’m not really much closer to answers at this point. It’s still very frustrating.

L and I took the dogs out to a park today. It was really nice to get out, and I pushed myself physically because I’m stubborn and I really miss being in nature. We sat or rested 2/3 of the time (much to the dogs’ frustrations), but it was nice. I’m now paying the price for my stubbornness. My muscles are complaining (weak, tense, painful), and I’m super fatigued. I’ve even gone back to taking pot several times since the outing because of the pain… on the plus side, while I still had a lot of trouble breathing, it wasn’t nearly as bad as 2 weeks ago. The inhaler helped some. The Advil helped some. The put helped some… and I was able to catch my breath about an hour after getting home. Not bad considering it would have taken more than twice that long even last week.

Anyway. I guess I just needed to write out my reasoning for limiting the testing he will do tomorrow. I know it might sound stupid to some, but… flashbacks suck.

Here’s hoping something brings definitive answers.


nightmares

Haven’t woken that terrified from a nightmare in a long time… the current president started a nuclear war, and bombs were going off on the horizon. Everyone I was close to was out and about at the time. There was nowhere to go to be safe, and the other people in the room just watched out the window at all the mushroom clouds…

I can usually wake up and ground myself, but the fear from this one isn’t leaving as easily (doesn’t help that whatever this ailment is effects my heart rate. It shoots up with the slightest effort, and stays there for the next few hours)… also doesn’t help that current leadership is stupid enough to do something like that… 😟😭

It’s weird; the nightmares of the past that should truly terrify me simply make me numb, but ones like t-rex from Jurassic Park finding me no matter where I hide, and this morning’s nightmare… I can’t shake them after I wake up. There’s something to be said for dissociation and numbing. It certainly makes life emotionally easier to float through.


Decisions…

If you had a set amount of money, and had to pick between the following, how do you prioritize? (All cost roughly the same)

  • pain meds
  • compression sleeves & leggings
  • glasses

All of these are things I need, but I can only afford 1 of them…

So yeah, how do you prioritize? Pain meds are needed to keep me functioning, but the compression wear would also help… also, I need glasses to see, and my newest ones are breaking (after only 4 months… don’t waste money on glasses from Target. They used to be decent (my first pair lasted over 3 years), but now they are made from crappy materials)…

Ugh.

I’m so torn.


run down.

I just want to cry… everything hurts again because I overdid physical activity today (oooohhhh… folding 2 loads of laundry and carrying one upstairs… SO strenuous… ::rolleyes::)

This sucks.

And I know that the neurologist won’t find anything either, coz none of the doctors have yet, so why would he be any different??

I should just save the cash, and keep hiding on the couch. Why waste money we don’t have just to be told there’s nothing wrong with me?

Dr C leaves for her vacation this weekend. The therapist she suggested to see in her absence called, but… what’s the point? Again, more money we don’t have spent trying to figure out how to talk to someone I don’t know, and will likely not see again… :/

I managed about an hour nap today, so insomnia rules dictate that I’m not going to be able to sleep much again tonight.

Have mentioned I’m tired? Emotionally, physically… I’m spent.

I should try my original pot tonight. I haven’t smoked it much since getting my card, mostly because smoking hurts my lungs for the next few days. But maybe I haven’t gotten so tolerant of it. The other formulations we have used to kick my butt to the curb. I’m lucky if they let me nap for a few minutes after taking them. Maybe the flower will let me sleep…


Insomnia, or…?

I don’t want to go to sleep. I can feel my anxiety building. The dread is creeping in. It feels like something horrible will happen when I go to bed…

I know it’s echos of the past, but it’s still difficult to shake.

I can feel the beginnings of body memories sparking up.

I don’t want to do this right now.

I don’t want to go to bed.

I don’t want to fight the monsters that will inevitably follow me there.

I don’t want to have to deal with this right now…

It’s always much worse when the depression kicks up, and it’s certainly kicking. Between this mystery ailment, financial issues, uncertain living situation, Dr C’s almost month-long vacation (which I’m having a very little kid reaction to for some reason)… It’s all overwhelming. And now the flashbacks are picking up again; starting with the body stuff.

I’m so tired of all this. It’s such a frustrating cycle. Even when one thing gets resolved or situated, ten other things take its place.

I give.

Uncle.

Please?

One of my biggest worries is that I’ll go to this consult next week, have some more cursory testing, but ultimately have this guy come to the same conclusion as everyone else: “I don’t know what it is. All your tests are fine”

If everything is so fine, why can’t I physically function? Why am I constantly out of breath from simple, everyday tasks? Why do my limbs hurt and cramp? Why is my grip weak? Why does it take me 2 hours to catch my breath after a short walk from the building to the car?

I really hope the doctor has at least some validation, if not answers.

I’m so tired of all this…