Paralysis

Last weekend started off with intentions of  leaving behind a frustrating work situation full of lies and accusations and banking some pure relaxation time at my parent’s West Virginia camp. It started off that way; it really did.

Derek, my newly married and long suffering husband, didn’t have to work and we all pilled into the car for the getaway. I even took my notebook in case I scored some inspiration.

But Saturday, no matter how enjoyable, found me cranky and irritable. On top of that, I had forgotten my meds. Sleeping on the ground that night was the last straw.

Every joint in my body was swollen and in throbbing pain Sunday. I have now missed work for three days, and in addition to the stomach churning of Cymbalta changes, I now have the worry of whether I will get fired for missing too much work.

I wish I knew more about Maryland and hiring/firing laws when it comes to known “handicaps.” But at 12%, I can’t look up the number for a pizza place let alone a legal situation.

All I have right now is paralysis. My big goal today is to feed and medicate myself. I have tons to do, more than I even realize, but keeping myself out of the hospital is my only goal.

Writing Again

I’ve realized an urge to write again; an urge I thought would never return.

I wrote a poem the other day–the first in 11 months. It is only on draft two, so it needs work, but I am proud of myself. It is about the big fight Derek and I had a few days ago.

I am also trying, again, to move more of my stuff into Derek’s from my old apartment. I am hoping to get an office (at least a table and chair) set-up, so I can write at a table. It makes a huge difference.

The last time I had all of my possessions in one spot, laid out in the way I like, was 15 months ago. Since then I’ve moved three times. My stuff is in chaos, needless to say. However, the real trouble is that I don’t do well mentally with upsets like this. No wonder it’s been a struggle and a half.

My main mental health issue now is sleep. With 250mg of Trazadone and 24mg of Ambian plus Remeron, I still toss and turn, wake up, and can’t get back to sleep. I am really hoping some internal sweeping, as my poetry tends to do, will help the sleeping situation.

Med Check

This past week has been rough to say the least. The biggest problem underlying the whole out of control, mixed-mania, depressed train wreck was a simple mix up in my med dosages.

I used to have Archway monitor my meds for me, in that once per week a worker would stop by my house and help me fill my daily med planner. Yes, one of those big old lady ones with Braille and the whole bit. I have to admit, it does sound silly that a 30 something needed all that help, but then factor in the bipolar brain fog (read about that here) and the fact that I am on 12+ meds at any given time.

But I gave up that service a while ago. The reason was that I couldn’t just sit around the house all day until they showed up.  So I’m going it alone…and I got a little confused.

Instead of taking the maximum dose of Cymbalta for my fibromyalgia, which is 120mg, I was taking 240mg. My Neurontin went from 200mg a day to 600mg. And on top of all that, I was only taking my anxiety medication once per day.

Needless to say, I was fucked up. I also lost some of my sight, which has returned with straightening everything out. Now every time I see my shrink, I will get a print out and a double check on my meds.

I’ll try to write more on the fallout next week. Stay strong!

Colorcoding My Life

Next to my work computer, and hopefully soon at home as well, I have a veritable garden of Post-It Notes.

Each day has a color; for example, Sunday is yellow. I have listed all the regular tasks I should do at work on a Sunday…including the personal note to blog and pay bills. I am hoping that improving my memory for work duties–clearly visible for my boss and co-workers to see–will help me to actually keep this job. The only one I now have.

From July 2013 until I was fired on October 14th, working a second job at the Library was extremely stressful. I was forgetting all sorts of things, like taking meds, completing work tasks, etc. It was not until recently I’ve had some explanation as to why my memory is just so very bad.

I read the article “The Cognitive Connection” in Bipolar Magazine, a magazine I didn’t know existed.

“Psychiatrists and researchers are coming to appreciate that memory lapses and other neurocognitive problems—disorganization, groping for words, difficulty learning new information—can go hand in hand with the more obvious mood and behavioral symptoms that characterize bipolar.”

So maybe it is not a character flaw or something I can blame myself for, like some people have done about losing my second, higher paying job.

“Bipolar brain fog can complicate everything from succeeding in school to paying the bills.”

What a precise way to describe this memory meltdown: Bipolar Brain Fog! I was actually fired for attendance, but it all stems back to slipping off my meds and forgetting elements of my job.

I remember all the Post-It Notes and Day Planners and homework note books that got me through college. Time to dust off some of those tactics.

The article also mentions lapses in attention, which can cause lose of coordination and balance! Did I mention I fall a lot?

I highly recommend reading the excerpt of  the article. I’ve also subscribed to the magazine and am eagerly awaiting my first issue.

This past week went a lot smother with the Post-It Notes; at least I felt a lot more productive at work…a pay period of 79.75 hours.

The only trouble, and my Mood Score of only 57% shows this, is the raging anxiety, sleeplessness, and irritableness at home. I see my shrink on Tuesday, so I suspect an increase in my Buspar.

More on meds later…

What can I do?

That is what a friend messaged me tonight in response to me being honest about how bad things are: What can I do?

And the answer is, I’m not sure. However, I need an answer to that question since I know I need help.

I have been tracking my mood on a UK site that I love, Moodscope.com, for a while know. While I am sure two people could score the same and not be feeling the same, I have figured out what the numbers mean for me. So here is a guide, for anyone brave enough to be one of my mood buddies, of how the numbers break down.

90%+ = Manic. I am likely to take lots of risks and do very stupid things like unprotected sex with a bisexual heroin addict or spend the month’s rent on comic books.

90% – 70% = I am handling my shit fairly well. I will fluctuate in response to stress, but over all things are ok.

70% – 50% = Something external, like a deadline, is not going well and a little bit of help or space will help, but I am still pretty good.

50% – 20% = I need support because things are feeling hectic. Some practical, concrete help is needed. I may have trouble articulating it, but I would appreciate you offering before I ask. A phone call would be fantastic. Make sure I am still taking my meds.

20% = 10% = I really need some help. I probably still can’t ask, but if you can spend the day with me or offer to take over a responsibility (like making dinner), it would mean the world to me. I probably can’t handle a phone conversation as it is too much for me. And no matter how much I deny it, I need company, too. Sit with me while I try to get my shit together. I may start drinking or smoking to self-medicate. This is not a good behavior because of the meds I take. I may also stop taking meds, quickening the spiral.

-10% = An ER visit or hospital stay is probably going to happen. I might get into fights and say hurtful things I don’t mean. Or get in trouble with the police for disturbing the peace, theft, or shoplifting. Or I might start hurting myself, like slamming my hand into a wall or cutting myself or vomiting or starving myself. I may even slap myself or other extreme types of behaviors. I need help immediately. A hotline call might be too much for me to do on my own; I may fight it. But I MUST get to someplace SAFE right away and get back on my meds.

They tried to make me go to Rehab…

…and I said, “Sure, OK.”

It takes me a while to work my way to the truth. Or at least a somewhat stable version of it.

I am in rehab, an all be it outpatient one, but rehab nonetheless. The few friends I am in any kind of contact with are dealing with this fact in very different ways. One wants to take me drinking. One traveled 4 hours by train to take naps with me. One comes to my house for dinner and brings pie.

But how to I deal with this? I should be writing lots of great poetry.

I’m not.

I am trying to remember to take my meds. I am trying to remember they are good for me, and that I should stay on them. All but the week’s supply is padlocked into a great big black box I have no access to. I also receive a phone call every evening to tell me to take my medicine and charge my cell phone. If this new protocol fails to keep me on meds (and prevent another fist fight and an ER visit for a broken hand – or at least severely contused hand), people I don’t know will come to my house twice a day and watch me take the pills. Then they will ask me to open my mouth and move my tongue around.

I am trying to remember to shower everyday and get dressed. I am trying to put my clean clothes away and pick all the clothes up off the floor of my new bedroom. Almost all of the socks I own are underneath my new bed.

I am trying to slowly chip away at the mountain of paperwork I have to fill out because the poorer you are, the more paperwork you have to fill out.

I have learned if I drink the smallest amount, I will laugh until I begin weeping followed by a spiral that will probably end in physical violence to others or myself.

I have learned I have not really slept well for the last 20 odd years, that Ambian is a precious commodity never to be squandered, and that sleeping meds will be my new best friend hopefully very soon.

I have learned to admit to my bitterness over having to leave school and that no one really seems to care as much as I think they should.

And of course, I have come to appreciate that the times I can spend in the company of other people who have experienced psych holds and The System are actually a relief. I can use a shorthand–no need to explain myself or explain why I am such a shadow of my former self.

And finally, I think about how much time must pass before I can no longer call myself a poet and what to do with a life that has no purpose.

Some musings on friendship

Not that I am much of a Bible reader anymore, by thinking over the events of the last several months has me remembering the adage of Proverbs 17:17:

“A friend loveth at all times, and a brother is born for adversity (KJV).”

I know I’ve not been easy to be friends with lately–isolation, irritability, and mood swings that pull at least 3 Gs. But I am surprised most by the ones who stuck it out and helped me the whole way through.

Like the phone call from someone I would have categorized as a business associate. I was so surprised, I used the cover story about my blood pressure being elevated. I mean it was, but doctors don’t usually keep you in the hospital for 5 days to monitor your BP, and certainly my sister’s message accompanying the number where I could be reached must have raised some eyebrows: don’t use her last name, just ask for Tiffany.

I’m also surprised by some of the traffic, small as it might be, of people commenting on my blog posts. For example, someone I’ve not seen in over 2 years, who I was pretty sure did not consider me a friend anymore, and who lives on the other coast. I guess the Apocrypha do have some valuable advice:

“Forsake not an old friend; for the new is not comparable to him: a new friend is as new wine; when it is old, thou shall drink it with pleasure. (Sirach 9:10).

Friendship is a theme today because the only blog I seem to be able to keep up with mentioned it, too. Jon Cousins wrote a blog entry entitled Where do you belong? today. The thought for today is to “[p]articipate in activities with people who share your interests.”

Of course, my interests have become rather narrow. Between my declining physical health and my unstable mental health, the immanent move and the unending packing, and the gobs of paperwork I need to fill out and send to various offices, free time is something I Still have to fight for. And I’m tired. I also have a head cold.

I have tried to invite friends to share in some of my recovery activities like cooking more, knitting, walking, etc. but with only limited success.

So while I am feeling better on the whole, I am still not really being a good friend. And I can’t help but become a little sad when my Carlow writer friends are displaying pictures of all the wonderful things I missed in Dublin and talking about packets with excitement.

So, while I am trying to do better, I can’t make any promises. I am staring a 1-2 year recovery in the face. If anyone wants to stick it out, I will be very glad of the company.

A not so up-to-date update

Sorry I kinda fell off the edge of the world there for a while.

I was in the hospital from August 3rd to the 8th (if you count the 19 hours in the Cumberland ER; I was then transferred via a $1,400+ ambulance ride to Meritus Hospital in Hagerstown). It is a really nice facility. I am now receiving outpatient care through a local organization with an estimated 1 yr. to 2 yr. recovery before I can go back to school OR work part-time, but not both.

I also have to move out of my apartment by the 10th of September since I can no longer afford to pay rent. My little sister and I are getting a place together where she will pay rent. I’ve already started packing, and we should be actually moving by the 7th of September. I’m also going to physical therapy twice per week and am in the awkward stage between knowing I have to have surgery and having the actual surgery scheduled.

I am applying for SSI, my meds have killed my memory (Thai language skills = completely gone), and I am now on a driving restriction until the new meds get rid of the visual and auditory hallucinations. Of course, the new meds also give me tremors and seizures.

I have been trying to be better with asking friends for help, which has been hit or miss. Tuesday my promised ride never showed or called, so I drove myself to PT seeing double the whole way. I’ve found it’s the parking lot that is so dangerous, so I used the valet service.

I have lost the ability to multi-task and lots of other activities are severely limited. I also now have a girlfriend, which seems the most ironic thing to have happened. Post-move, I am going to try to start blogging more.

Ttfn

I am a Wikipedia cut and paste

So, I went to see my counselor today and finished the last of the psych eval questions. There were over 700 questions altogether. I don’t even think that is the last of it, but I should have some results and possibly a clearer diagnosis soon.

The oddest part about taking these tests is that they stirred up a lot of stuff for me that I was not at all expecting. I had terrible nightmares after the first session, and had to skip testing the next day.

I have tried to track my moods still, and I think when I start hitting the single digits it is time for me to be a little concerned. I’ve tried to define exactly how I am feeling, since it is so confusing (and I’ve still been confused).

Enter Sarah from Seattle! She wrote about two different types of manic periods, which I’d not read about before. And as I was posting a comment to her blog, I realized I should re-post my response here. A little bit of self-plagiarism, if you will.

“I like the idea of defining two different types of manic episodes. I’ve not really heard about that elsewhere. I love how you can put something into words I’ve only begun to start noticing…

“I think this is what I was trying to explain to my counselor (rather unsuccessfully) that before I started taking Cymbalta my manic episodes where the racing, intense, 12 project, chest pounding kind. And that was good for me because I was working and managing projects and my life was a house ‘o fire. I could let grading slide for weeks and then barrel through a month’s worth of grading in a few days. I could put events or school packets together at the last-minute that looked well planed out, etc.

“But now, I have two OTHER kinds. 1) I am so wired I can’t sleep but also can’t be productive. While I used to be able to write whole poems during a manic cycle, I have trouble concentrating on any task. Everything is just a blur and I can’t focus. I can only sit around and think. And play video games.

“Then, recently, I have been getting these rather frantic periods of no sleep, buzzing thought, but my mood is subterranean. I guess that would be a mixed episode.”

I actually looked up the definition of a mixed episode because I was unsure. To my aid comes Wikipedia, which is actually a much nicer way to read about mental health issues than is WebMD (haven of hypochondriacs).

Here is the definition:

“In the context of mental disorder, a mixed state, also known as dysphoric mania, agitated depression, or a mixed episode, is a condition during which symptoms of mania and depression occur simultaneously, such as agitation, anxiety, fatigue, guilt, impulsiveness, irritability, morbid or suicidal ideation, panic, paranoia, pressured speech and rage. Typical examples include tearfulness during a manic episode or racing thoughts during a depressive episode. One may also feel incredibly frustrated or be prone to fits of rage in this state, since one may feel like a failure and at the same time have a flight of ideas. Mixed states are often the most dangerous period of mood disorders, during which susceptibility to substance abuse, panic disorder, commission of violence, suicide attempts, and other complications increase greatly.”

To be diagnosed as having a mixed state, symptoms are supposed to last a week, but then it says, “However, mixed episodes rarely conform to these qualifications; they may be described more practically as any combination of depressive and manic symptoms.“

I also learned that “some antidepressant drugs may trigger dysphoric mania in susceptible individuals.” So I am thinking since I have felt this way since stopping the Lamictal, it might be having some lingering effects.

So, what about treatment?

Good question, since I’m not really sure.

As I mentioned, I was prescribed two new medicines: Saphris (asenapine) and Cogentin (benztropine).

According to Wikipedia, “Treatment of mixed states is typically based upon administration of mood stabilizing medication, which may include anticonvulsants such as valproic acid; atypical antipsychotics such asolanzapine, aripiprazole, and ziprasidone; or first-generation antipsychotics such as haloperidol…Mood stabilizers work to reduce the manic symptoms associated with the mixed state, but they are not considered particularly effective for improving concurrent depressive symptoms.“

Saphris is an atypical antipsychotic, but it tastes SO BAD, I threw up the first time I tried to dissolve it under my tongue as directed. My doctor wrote the script for the black cherry flavor, but the pharmacist gave me the plain ones. Why would a company even think of marketing something that tastes so foul!?!

My counselor sent my shrink an email asking if it is alright if I just swallow them.

The Cogentin is to control the seizures and muscle pain I am still occasionally having and which the Saphris could make worse. I have resumed taking it. So I’m currently taking three meds.

I would say, as bad a depressed states are, a mixed one is worse because I can’t take refuge in bed. In fact, I’ve not slept in my bed in several days, just cat-napping on the couch in the A/C.

I’m still having trouble keeping up with simple things such as checking my voice messages or answering emails. And next week is the day camp I am supposed to be teaching! I need to work up my lesson plans ASAP!

So if any of you are waiting on an email, phone call, etc., please don’t take it personally. I will get back to you before the year is out, I promise!

A quick Google search…

How I’ve felt lately…

A blur, that’s how the past few days feel. It’s not like I’ve lost time again, I just haven’t done anything worth really remembering.

I guess the important stuff for those of you who may care is as follows:

–> I went to my PCP (primary care physician for those of you still without insurance), and she did blood work and had me go for a CT scan to see if that episode was a stroke or not. Between my shrink and my doc, the three guesses in the running are 1) an idiosyncratic (read: I’m special) severe reaction to the increasing dosage of the Lamictal, 2) a stroke, or 3) a psychotic break. I have several appointments this week to figure out if there is any permanent damage.

–> I was put on two new medications. One is an anti-seizure medicine and the other an anti-psychotic. The jury is still out on them.

–> A friend brought me another A/C unit, so while I had felt like I was going to boil alive in my apartment (at least 100 degrees in the kitchen) and was living on cold baked beans and crackers (the living room was 96), it is now a mere 76 degrees in here. Last night I was able to cook a proper meal (chicken helper made with tuna).

–> I can’t pay July’s rent, so eviction procedures will start again. I made the rounds to Social Security, Social Services, and HRDC, and the result was “Maybe.” Maybe I can get some help, maybe I will have to live in my car, maybe I will have to beg my sister to let my cats live with her.

I’ve tried to have everyone who owes me money to pay up. So far, out of the $900+ that is legitimately owed to me from various sources, I managed to scrape up $75 in a partial refund from a writer’s retreat in April I didn’t go to because I was sick.

~~~

I am finding that I am less and less interested in being on my personal Facebook account. I have 435 friends on Facebook. I am sure well over half of them have no idea what I am going through even through this blog entry, as they all are, will be posted on both my personal account and my page.

I am very tempted to delete all the people I’ve not really had any contact with since this all started. I’d drop down below 100, I’m sure. In any case, I created an alternate profile. I have 250 friends who play the same three games I do. Some of them post very funny things, and in the one gaming group, everyone is polite and has no idea that for the last several months I have slowly and painfully going insane.

They have no past to judge me by, so perceived or expected achievements; they make no demands (other than requests for in-game resources). I have fun there. I like it there. I want to stay.