Signs of Life

A couple of days ago The Chair was moved to another room.  At my direction, my fully functioning command center/jail cell/dining room/office/bedroom was dismantled and moved to my bedroom.  The prescription bottles, notepads, over the counter medications, and everything else within reach was put away.  There are other chairs and sofas in the living area, but the self-imposed prison is no more.

I sat in The Chair all summer long.  I only left the house for therapy/psych appointments, and those were scheduled on the same day or one day apart because I still can only manage to shower once a week...sometimes.  I did not drive because my brain could not handle the speed of it, so I had others ferry me back and forth to my appointments.  On the rare occasion that I did drive, I had someone with me, just in case.

Over the last several weeks I have titrated my dose of Depakote up to 1500 mgs daily.  My side effects are mild and not enough to cause me to discontinue the drug.  My once thick hair has thinned, but it's not horrible.  I have stomach pain on occasion, but that is usually solved by drinking more water or taking my meds with food.  I have gained a considerable amount of weight, but am working to take it off.  I still continue to take valium, as needed, for severe anxiety/panic.  My psych doc added Zoloft this week to assist with that and depression.  I think we are on the right track pharma-wise because I do feel better ... more even.  However, I did have a week-long manic episode a couple of weeks ago.  I did not sleep for almost 100 hours (over 4 days), spent $2,000 on crap that I did not need or use (all of it was returned), and acted out in other ways that are not worth mentioning here.  I did the smart thing and managed to call my therapist and psych doc and they helped to bring me back down.

I do have angry outbursts on occasion, but those have greatly reduced.

Things are better on the depression side.  It has been several weeks since my last episode of suicidal ideation. 

While I still encounter hurdles along the way, I am improving.  The Chair has been replaced with a tidy living area.  I am engaged in the workings of my home.  We are moving in the right direction with medications.  The main concerns at this time are my weight and fear of leaving my home.  I told my psych doctor that walking outside felt so expansive - as though gravity had lost it's ability to hold me fast on the Earth.  Of course this fear has developed because of my extended in-home stay, so I do my best to get outside and take a few additional steps each time I venture out.

The good:
Meds are working
Moods are more even
Self harm has greatly reduced and is almost gone

Need improvement:
Self care
Overcoming fears / anxiety / panic / frustration / anger
   

 

The Chair

The weeks since my last post have been very difficult for me.  I know - broken record - but they were the worst in many years because they robbed me of the last thing I held dear: the ability to put my thoughts into words.  The fear consumed me, wrapped around me, suffocated me, and forced me into a tiny three by three foot square:  The Chair.  The Chair is my safe place - home base - no evil can touch me here.

Of course the warped part of that is the fact that The Chair is, in itself, evil.  It is my prison.  I don't see it that way, but it is.

The Last Stand.  

If you are of a certain age you remember the old tube televisions.  After turning off the set I used to watch the once vibrant and engaging picture get smaller and smaller until it glowed as the tiniest little dot in the middle of the screen.  That dot stayed there for quite some time, and then it was gone.  Much like that concentrated speck of light - an entire universe on the head of a pin - my world has shrunk to the size of a recliner.

After the failings of Lithium, Risperidone, and Lamictal, which gave me Stevens Johnson Syndrome (still dealing with the side effects of that), my doctors have moved on down the pharma line to depakote.  My doctor was so concerned about side effects that he started me on a very small dose - 250 mg daily for four days, and 500 mg daily thereafter for a couple of weeks.  We will move up at that time if all goes well.  I took my first 500 mg dose last night.  So far, so good.

Swallowing that first depakote pill took every bit of bravery and strength I had.  It took me two days to build up the courage...turning the prescription bottle over in my hands for hours.  Pills have not been my friend.  In fact, the pills charged with bringing me back from suicidal ideation nearly killed me. 

The words come so much harder now, so I have very little to say.  It is important to mention that I am not a victim to my diagnoses.  If you could see inside my head you would see an epic battle being waged against the disorders by my desire to be well and live a balanced and joyful life.  I do not sit here because I've given up.  I sit here because I'm holding this fucking mountain as a last line of defense against disappearing forever.           

Symptoms

Just took 10 mg of Valium.  Mind racing, unable to speak clearly, frustrated, want to claw my face off.

Heart pounding. 

Extremely overwhelmed.

Dizzy.

Single thoughts or actions cause me so much pain.  It's too much. 

I went to the market and could not handle the choices.  No one was helping me make choices.  I panicked.

Must calm down or I am going to lose control.

 

Waiting to die

I've had a rough couple of days.  The good news is that I have an appointment with my psychiatrist on the 16th.  The bad news is that it is on the 16th, which seems like a lifetime away. 

I have no idea what "normal" is in life.  My life is not normal.  Other people are able to drive places, work, shop, clean, read a book, listen to conversation, take showers, laugh, love, feel - I am unable to do those things.  I want to do those things, and try very, very hard, but I just can't. 

It is impossible to accurately describe the difficulties that I am experiencing, because I honestly have no idea what is possible or normal.  My brain fails me.  I used to do so many things.  I was capable of great things.  Now I avoid causing myself any pain by staying in my home.  I rarely go out.  If I do, there are issues, and those issues are getting harder and harder to overcome so I've stopped testing the waters.  I very quickly move from one mood to the next and have lost the ability to "snap out of it" or respond to assistance from my husband to either calm down or climb out of a deep depression.

I want to be angry about this.  I want to be sad.  I have no feelings.  I have no life.  I serve no purpose.  I am of no use to myself or anyone else like this.

My day:

Wake up.  Breakfast.  Prednisone (still dealing with the Lamictal Rash).  Check email (if I can - fear of the unknown causes me great anxiety). 

And then I sit.  And sit.  And sit.  Sometimes I fall asleep, but mostly I just sit and think about how much I hate myself.  I do not watch television because it moves too fast for me.  Conversation makes me very angry.  I do not clean the house or shower or brush my teeth.  I have some facial wipes that I will use if I remember, perhaps once or twice a week before or after bed. 

I'll have some lunch.  If the dog has to go out I see if someone else in the house will put her out.  I'll do it if I have to.  I hate looking outside. 

If the dog barks, I freak out.  If a car drives by, my heart jumps.  If I receive bad news I will cry and want to end my life.  If something good happens, I feel nothing. 

I only go to the restroom if it is an emergency.  I spend my days frozen in place.  It is mentally and physically painful to do more than that. 

My therapist says that I am not lazy.  I argued with her, but she's right - I'm not.  There are so many things that I desperately want to do - take a walk, clean my closet, fold some towels, make a phone call - but those things cause me actual pain. 

I have been like this for years.  Back when I was working, I had to make a choice - do I shower?  If I shower I will have a hard time driving to work.  When I get to work I will have to find the ability to work.  Most days I just sat there and quietly cut my skin.  I would do a couple of things (type a letter, draft a document) but that was it.  When I got home I would hit the chair and dig my skin until I fell asleep.  I usually woke up the next morning in the same spot, wearing the same clothes.  If I'd showered the day before I would just change my shirt and brush my hair before heading out the door for another day at the office.  Near the end of my employment it was common for me to go for 4 days without showering. 

Right now I only shower if I have an appointment with my therapist.  I usually go at least 5 days in a row without a shower. 

My therapy appointments are scheduled on dates and at times when my husband is off work so that I have a ride.  I do drive on occasion (to buy a breakfast sandwich or go to the market), but I should not drive.  I stay within a 4 mile radius of home so it feels relatively safe, but it is not safe.  My brain has a very hard time keeping up with the speed of driving.  I used to zoom my ass down the street like a maniac.

The zoom is long gone but the maniac remains. 

I want to take care of myself.  In my mind I do not deserve a walk or nutritious meals.  Those are reserved for people who earn a living.  I am not working and should not be spending work hours (8:00 a.m. - 5:00 p.m.) doing anything but sitting and thinking about what I should and would be doing if I had a job.   

This is not a life.  I do not have the tools to figure out how to live my life.  At this point, I have not found anyone else who knows how to help me.  Several medications have failed.  I suffered a horrible reaction to one of them, and the other two contributed to a 40+ pound weight gain in a few short weeks. 

I've lost everything.  I don't know how to make this right.  I'm just waiting to die because this is no way to live. 


 

Insomnia sucks

I was still wide awake at 5:30 this morning.  I tried every trick in my repertoire, but sleep just would not come.  My head has been pounding all day today, and I am sick to my stomach.

I continue to suffer with the Lamictal Rash, which rages on and still covers more than half of my body.  My lymph nodes continue to fight the fight and as a result are enormous.  The high dose Prednisone seems to have lost it's edge.

No flourish of words today. I am completely shredded. 

     

 

She's a maniac

I fell hard and fast yesterday, ending the day with suicidal thoughts.  There is simply no way to do this alone and survive.  No matter how much I want to believe that what I am experiencing is situational, or explained away with some other fantasy, the fact remains:  I am not well.  My biochemistry is all wrong.  I must keep going - keep searching - keep working hard to fight the fight to find ME. 

Instead of a midnight walk to the railroad tracks, I reached out for my phone and left an after-hours message for my therapist.  She returned my call straight away upon arriving at her office this morning, and I saw her today. 

Here is what I know (and what my therapist told me):  Making that call was brave; I wanted to die.  Making that call took incredible strength; I was so tired.  Making that call was wise; I wanted to end all thought process because even simple awareness caused me unimaginable pain.

I hate the deep depressive states the most.  The intrusive thoughts of ending my life used to frighten me, but now I know them like certain old toys.  You know the ones -- the toys you take out and play with on occasion - the rainy day toys.  The 'what if' toys.  The whispering toys.

I happened upon a quote from novelist Anne Lamott yesterday that tugged at the despair and actually gave me a bit of a chuckle.  For all I know it probably helped my hands reach for that phone.  It said, “I thought such awful thoughts that I cannot even say them out loud because they would make Jesus want to drink gin straight out of the cat dish.” 

My darkness is the darkest of the dark and the most horrific of all horrors.  It is a closed box void of all choices but one - to stop the brain.  It's peaceful in a way - there is nothing else, just the plan and the hope that the plan works.

Falling asleep last night was like throwing a life preserver out for the sunrise.  I made it.  Not only did I make it, but I greeted the sun with wide, wild eyes.

Enter the maniac.

I hit the ground running - literally running.  I ran downstairs and throughout the house - circling each room for no reason other than to see it, smell it, leave my spirit in it.  I did this until my bladder decided that a pit stop was in order.  I barely finished there when I called to my husband - still in my pajamas - and yelled that I needed something to eat to take my prednisone.  The dog was by my side for all of this, but not for the fun - she was whining and crying on our wild and confused tear through the house.  She was afraid.  I was afraid.  I woke up in a full on manic state.

My husband took me to get some food, which I swallowed without chewing when we returned.  Knowing that these moods can be a quick flash or protracted and painful, I took advantage of the beginning stages of this upswing and brushed my teeth, listened to a couple of new albums while pacing the floor, answered my therapist's call, took a shower (for the first time in 5 days, performing each action 8 times.  Twice), dressed, decided that we all needed manicures and pedicures (my husband had a pedicure today)...and then it got worse just before I entered the hospital this afternoon to meet with my therapist.  I know how this works.  I could not write my name.  I could not speak my name to the receptionist, who had to call for my therapist who quickly took care of the usual paperwork.  My thoughts were coming hard and fast - too hard and fast to process and it made me very afraid.  It always makes me afraid.  It's as though some invisible force is wearing me as a suit for a marathon.  It's exhausting.  So scary.  It's near as bad as the lowest of lows because that is where the high drops you.  Imagine running up the side of a building, reaching the top, floating over the height of things...never touching the ground.  This actually feels quite nice for a short time.  You certainly get things done.  At the beginning stages I am hyper-focused, so much so that I am capable of INCREDIBLE moments of brilliant thought.  I solve problems, write beautiful words, appreciate splendid music and views, love with my entire heart - it is what I would imagine heaven would be like if it existed.  These moments are dubious in their trickery, and they are fleeting.  They can go on for a week or more, or tick away with the seconds. 

This is different for everyone.  For me, because I learn more each time this happens, these moments begin to overlap in a frustrating game of "catch me if you can" and I end up running after the runner in an effort to keep up.

I never catch up.  The runner is a heartless bastard. 

I soon lose the ability to think clearly.  I have a hard time pulling words from the mess in my head.  I am unable to write my name, or spell it for that matter.  I get anxious, agitated, scared, frustrated.  I often lash out in extreme anger - like an animal without a voice.  I am held captive by my inability to keep up with the runner.  I can literally see the runner leave me standing in the middle of the road --- alone, confused, exhausted.

I write this now with enough valium on board to ground a herd of cattle.  I am not tired, but I do have some control over my brain and the typing helps release some of the nervous energy that would usually be spent tapping myself in the head or wringing my hands or tearing at my skin.


These posts are difficult to write (I still click my teeth once for every word - my poor teeth), but writing seems to be the only thing that brings me back these days.  Writing is my anchor.  These posts are also a way to track my days in real time and end up being very valuable in my treatment and, hopefully, my recovery.


My goal for this day:

☑   Live, no matter what.

I did that.   

 

    

On my own...again

All of my appointments have been cancelled.  I have no therapy, psych nurse practitioner or psychiatrist/med management appointments at all.  I am on my own...again.  We've come full circle.  It's hard to avoid feeling down right now.  I thought someone had discovered the elusive answers to the issues that have consumed my life.  I thought that things would get better from that point forward.  There would be hard work, but I was willing to do that work - to put forth an honest effort to invest in my health, something I have been unable to do until now because I simply did not know where to begin...what was wrong...how to fix it.  I was told that it would "get better from here." I put faith and complete trust in that statement.  I believed that statement with every cell in my misfit body.  I had hope. 

Everything happened all at once back in April.  All of the balls that I had flying in the air came crashing down.  I was up and down and up and down and down and...down.  I wanted to die.  I wanted to live.  I wanted to squeeze the shit out of life with my fabulous plans...fabulous plans that I could not make happen because my mind was a jumble of bits and pieces and nothing fit.  Nothing made sense.

I fell into the deepest and most frightening despair of my life.  Self harm was almost constant.  I would cut my stomach with scissors under my desk at work (usually while my boss was grilling me), claw at my body at home, in the car, while I was sleeping.  When I saw blood, I felt better.  Contrary to what most people say about self-harm being a release and a cry for help - it was more; I wanted to die.  I made plans to die.  I was going to take my life.  The living world had lost its pull on my heart and all that was left was my mind.  My mind was saying yes to the end.  It felt right to finish the journey.  People would be better off without my negative energy in their lives.  They would go on.  Be better.  Do better.  Learn from my illnesses.  I had to give myself permission to stop trying so fucking hard to be well.  I gave myself permission to stop pretending. 

It happened all at once. 

After letting the mask fall, I told my husband that I had to leave.  I wasn't going to, but after 20+ years of marriage I was not going to leave him with a letter.  I was not going to leave this world without saying goodbye to my one true friend.  He did not ask me to stay, but he did beg me to wait.  He stopped everything and asked that I join him in a discussion with our family doctor.  I agreed and we saw him the next morning.  Our family doctor referred me to a therapist and psych nurse practitioner.  After some discussion and many tests, they diagnosed me with several disorders and started therapy and medicine.  I had hope, I think.  I certainly had something.  It gave me a moment to focus on myself - perhaps to stay alive and see if I could salvage the second half of my life.  Perhaps find joy.  No, not even joy.  I desperately wanted PEACE in my heart and mind.

The answer quickly turned sour and became a problem.  Another problem.  Another thing to endure and survive.  I tried.  I FUCKING TRIED, but the cure was just another cross to bear, and my weary shoulders had long since worn out.  I gained a massive amount of weight, pissed my pants, drooled, and started to loathe the very sight of my ever-expanding, hideous body.  This was not the answer.

I discussed my issues with Lithium and Risperidone at every appointment, but my concerns fell on deaf ears.  I felt like a prisoner to another problem.  It was my problem - they gave it to me and expected me to make it work.

That did not work.  I spoke and no one listened.  I became the patient.  The mental patient.  I was not a partner in my own care - my opinion did not matter.  I had no say - no control.  The people charged with my care - my life - would just ignore my questions and carry on as though they were never asked.  I would ask again, and the conversation would continue.  I was invisible.  My input did not matter on this train.   

In the meantime, I had a career and responsibilities.  I have a husband and children.  I have a home.  I have an extended family.  There were life events - graduations, college, new responsibilites, injuries, demands, bills...

It happened all at once.

My boss, who had abused me for years (and I permitted it because I needed that job), layed the final straw on the trembling pile when he demanded that I cancel two medical appointments and tell personnel why I had those appointments.  I made the decision to leave my job of almost 11 years.  In doing so, I knew that I would leave that career forever.  I'd lost my edge many years ago and it was time.

It happened all at once.

I wanted to die, attempted to die, left my job, received shitty care, was twice almost involuntarily committed, agreed to a forced intensive outpatient program that nearly killed me, gained 45 pounds, and lost every last regular contact with coworkers, colleagues and clients.  I lost control, my self-respect...I lost nearly everything.

I'm right back where I started, only now I have nothing, save my husband.  I have less than nothing because my care up to this point has cost me thousands of precious dollars and did nothing but make things worse.  I am obese.  I am battling serious adverse effects of Lamictal.  The children (3) will soon be off (one is already) to colleges and careers.  We have to sell the house.  Life is forever altered because I dared to ask for help. 

I am exhausted.  There is nothing left under my burned skin.  I feel a small twinge of life deep inside, but those have let me down before.  The plan going forward is quite simple:  set goals, do my best, focus on what I have accomplished and not what is left undone at the end of the day.  If I run off the rails, I will seek help.  "Help" has been very unkind to me, but the twinge is telling me that I should keep trying.  Is this good?  No, no this is not good.  This is a dangerous time.  I know that.  My family knows that.  We tried.  I tried.  That twinge is all I have and I pray that it is enough to carry me through to the next source of help and hope, if there is such a thing. 

It's all me.  The scary part is that I have no idea who the hell "me" is.   

   

Slogging along

The Erythema Multiforme / Stevens-Johnson Syndrome (Lamictal Rash) ordeal continues.  The skin reaction has changed to a lacy appearance and has spread to other areas, now covering every part of my body from my ears down (my forehead has been spared...for now).  My eyes are also involved.  The newly-affected areas start fresh and follow the same pattern.  EM/SJS likes to play peekaboo in that it settles down and then pops up elsewhere in a full-on rage.  The biggest issue right now is EXTREME joint, muscle, and nerve pain.  I am dictating this post because typing is an impossible task.  The pain is a constant 7-8 on a scale of 1-10, with 10 being the worst pain I have ever experienced in my life.  It’s a throbbing, numbing, aching, burning, electrical experience and I was stupid to say no to pain medication when it was offered.  I was told to expect this, but for some reason did not believe that it would get this severe. 

I was wrong.

I am surprised and satisfied with the care that I received at the hospital.  The physician was thorough, knowledgeable, and did not treat me with the typical “oh, you’re bipolar” attitude that I’ve experienced and come to expect of late.  For that, I am grateful.

I am also grateful for the high-dose prednisone, which does appear to be helping.  I'm not out of the woods yet, but feel as though I've turned a corner.   

Agony

I am in SO MUCH PAIN.  Erythema Multiforme is pure torture.  I am essentially being burned from the inside out and will lose the skin on my arms, thighs, and entire back.  I think my upper chest will be spared, but that remains to be seen.  Every moment is an eternity.  There is no possible way to get comfortable.  I've tried.

My entire body is affected - from the tips of my toes to my jaw - and my ears.  I'm in shock most of the time because it is so overwhelming.  There is absolutely nothing to do but wait it out and hope that it does not get worse....but it will.  Even though I stopped taking the Lamictal two days ago, it will continue to poison my system for the next 6 +/- days.  I am unable to leave the house because I scare people.  My body is on fire (102.9 at last check) so if the sun hits me ... I'll just go ahead and avoid finding out how that feels.   

Erythema Multiforme /Lamictal Rash

I've made the decision to stop all treatment for bipolar, etc.  The treatment has been much worse than the actual disorders.  As I've said in previous posts, I've managed to stay alive for 40+ years - it was touch and go there for a bit with 2 suicide attempts - but I can figure out the next 40 years and look for help when required.  This current situation may very well kill me if it spreads to my internal organs.  Now is the time to bow out and admit that some people will not find a pharmaceutical answer to their problems.

Odd, really.  I begged to die for so long and now, when faced with this challenge, all I want to do is to make it through this and live - mostly because this is a slow and tortuous way to go.        

Erythema Multiforme

Waving the white flag

The dreaded "Lamictal Rash" (Erythema Multiforme) sent me to the ER this morning since my primary care physician and psychiatrist were too busy referring me to each other in a not-so-amusing game of hot potato.

The ER doctor was not impressed with the absence of care in my case. 

I am on high dose prednisone for a couple of weeks and face a solid month of recovery.  All from 25 mgs of off-label use of a simple little anticonvulsant.  Go me.

I am in extreme pain, nauseous, dizzy, and my lymph nodes are swollen so the stiff neck is an added bonus.

I just put in my order for a medicinal banana split, with extra strawberries.

I'm done.

The dreaded "Lamictal Rash" appeared last night, along with a very stiff and painful neck.  Lamictal was my last, best chance at an acceptable maintenance medication so this is a big disappointment.  I placed calls first thing this morning to my primary care physician and psychiatrist explaining the situation, as I was instructed to do if this should ever happen.



*crickets* for several hours.



I finally heard back from my primary care physician's nurse, who said that I should direct my issues to the prescribing doctor.  I explained (again) that the prescribing doctor is in fact a psychiatrist who had instructed me to contact my primary care physician if any adverse reactions (rash) occur with Lamictal.  Psychiatrists have offices with velvet divans.  They do not have exam tables and paper gowns.  (sarcasm)  The nurse asked if I was able to breathe.  Really?  Of course I can breathe; I'm talking, right?

I was once again told to contact the psychiatrist/prescribing doctor with my issue. 

I did.

Again.

No answer.

When (IF) the psychiatrist calls he will say that I should be seen by my medical doctor to determine if I am having an allergic reaction to the medication, or he will send me to the emergency room. 

Ah, the emergency room.  If I go there I will wait hours upon hours.  They will take a look at my rash and then refer me to the two doctors who are throwing me back and forth like a hot potato.

So this is what the bottom of the crack looks like after you fall through.  Interesting.

Here is the plan:  I no longer have Bipolar I, Anxiety/Panic disorder, PTSD, ADD, OCD, Dermatillomania, etc. - I have been cured.  Isn't that wonderful?!  I have to stop taking the medicine because I truly am on my own and if I take another dose and the rash REALLY takes off....then what?  Who's going to treat me?   

I am sick and fucking tired of being treated like an idiot because I carry these labels.  I am intelligent, underserved, overcharged, and, at times, harmed by my medical team.  I've had to fire people, hire others, and beg for treatment, only to be denied assistance when things go wrong.

The health care system in this country is bullshit.  I'm done.  I'm cured.  There is nothing wrong with me at all.  I'm sending the FUCK YOU flag up the pole.  I navigated this alone for 40+ years, I can do the rest of it in the exact same way.  Should be loads of fun.

*mic drop* 


UPDATE at 4:20 p.m.  Psychiatrist called.  He said that my PCP should have fit me in, but it doesn't matter because the Lamictal is done.  Once I described the increasing nature of the rash and stiff neck he said that I should stop taking it immediately.  We are back to square one.

Inside out

I’m scattered about today. Everything is misspelled and difficult to write and my mind is racing. My mind is racing but unable to be still and make a decision. My handwriting is a mess to the instructor but I can read it. I cry in the parking lot on the phone with my husband. It’s too much – I’ve lost the ability to understand – I glaze over and miss key points. He comforts me but not really; his words are a tinny echo.

I talk too much – too fast – take up the workshop time. I ask “good questions” but am distracted and distracting. People stare. What do they see? Me, fat? Me, unsure? Me?

For some odd reason confused people ask me questions, assuming that I would know the answer, be able to answer, have the answer … do I appear ok to you? Trust yourself because I am not to be trusted.

I do not have the energy to get up to get my medicine in the cabinet. I am too tired to ask someone else to get it. I do not want to make the noise necessary to ask. I hate the sounds of chewing and talking and television and, jesus fucking christ, stop the useless babble! What you’re saying means nothing at all right now. What problem are you solving with your discussion? What good is it? Why bother?

I like silence. I would prefer quiet. However my mind is most unquiet and the world is deafening.

Every cell is shaking. I hold myself in static positions. Why? From fear? Of what? My husband keeps swaying his knee. The dog pounces on her toy and walks by my chair. WHY do people and animals just move about like this? It’s wasted energy. You must have a purpose for what you do. I click my teeth when I read and count – for every beat.

I just want to breathe, all by myself. I am the brain of the house – isn’t that frightening? It’s exhausting – I get tired. I have a hard time sleeping because once I start the brain wheel it spins and spins and reaches breakneck speed. You do not stop something like that all at once…or at all. It just burns out. The stops are very dark. The stops are very dark when you alone hold the key to the starts. I have a malfunctioning brain at the helm of a confused and abused body; certainly the most useless thing of all.

Alone for a few moments. I asked for this and am so thankful for the break from the noise. No typing now … it is time to bring it down. Just me, the wind in the trees, the chimes, and the dog.

Right hand on my chest, and the breath.

Choose.

Pick a card - any card. 

BUT WAIT - before you pick a card you should know that all of the available cards contain shitty situations.  These situations will require effort on your part to improve them; to mold them into something that you can live with.  You should also know that in order to change your current situation, you must pick one of these cards; life is what unfolds based on the choices you make along the way. 

How do you choose?  Will you choose to avoid the game altogether and thereby check out of life?  Avoid the risk?  Deny yourself the chance to turn a shitty situation into something slighty better than death ...possibly wonderful ....perhaps delightful?  This is your chance.  Pick a card.  What do you do?

I have an entire deck of shitty choices in front of me right now.  I left my old life behind when I crashed - the money, colleagues, social circles - all gone and forever altered.  If you leave the game people rarely hold your hand as you exit. 

A choice must be made.  This choice will change the course of my life and require a great deal of effort on my part.  Do I have the strength?  Probably not, but I'll have to find it anyway.  Any move you make requires at least some forward momentum, no matter how slight.

Do I choose to barely make it and live as a victim to my diagnoses?

I have been advised by my doctors and therapist that my old career is over - I will not be able to work in such a high-stress environment ever again.  If I choose disability, I choose a life of abject poverty - of trying to live on $1,000 a month. 

Do I choose to ignore my diagnoses and try to join the old game?

I could ignore the advice of my doctors and therapist and push it all down - like I used to do - and head back out to the playground.  It hasn't been that long - I could do it.  How long before I lose it all again, and will I survive the next fall?

Do I choose to take a new, risky road? 

I could choose to do something that I've never done before, but that takes a great deal of effort and a solid commitment to see things through.  I'd be pulling up my own bootstraps during the weakest time of my life.  If I fail, I fail hard and without a net
. 
Do I choose to take a few steps back and accept something less than what I had before?

I could choose to take a job with less stress, money, responsibility  ... everything - something slightly better than poverty and mind-numbingly boring. 


The one thing that all of these choices have in common is that they require me to push back against my illnesses, and that is what lead to this current crisis.  I have no idea what to do.  At this point I feel that I should start small and work my way back.  Unfortunately, the world does not wait for the weakest of the herd and I will likely never make it back.

Ladies and Gentlemen:  Allow me to introduce you to just some of the challenges facing individuals suffering from any sort of illness.  The choices are never easy, but if you want to LIVE you must CHOOSE. 

Rainy days and Mondays

Contrary to the next line of that song, this rainy Monday did not get me down.  Today was a good day for me.  I had a few issues during a focus group discussion this evening with two people that I shall refer to as the "chip cruncher" and "snot sucker", but other than that - things went well.  The chip cruncher and snot sucker lived to leave the room, and I did not even bother to choke them in my mind.

No issues. 

I have to start testing myself now - progressively adding additional goals and expanding my ability to live a full and productive life.

I've lost 6.2 pounds in the last three days, so the weight appears to be coming off almost as fast as it went on with the Lithium and Risperidone.  I look rested - not crazed.  

I'm hopeful.  I want this positive flow to continue. 

Holding on for dear life

In terms of severity of symptoms, this was a good day.  My sleep has improved and I think that has allowed my brain some time to rewire a few of the broken bits. 

I had breakfast (really enjoying coffee again), took a walk around the river with my son, and fueled my body with healthy food.  I'm down 5 pounds as of this morning.  I have a tremendous amount of work to do to reverse the significant weight gain caused by Lithium and Risperidone, but progress has buoyed my commitment to carry on.

Several people have noticed "a difference" in my speech and moods.  The depression is just under the surface and I work very hard to keep it at bay.  I can actually feel it creeping in and hold on for dear life to fight against it.  At this point it helps to stop the fall if I engage in some sort of mental exercise, but it's a constant battle.  I do not want the fear of falling to get worse than the actual fall, and hope that the increasing dosages of Lamictal will be the answer.  We have a lot riding on this damn drug.

That said, in the last two days I have gone from suicidal to so manic that I had altercations with two separate strangers (men) in less than 24 hours.  It was very dangerous behavior and I was lucky.  We are not there yet.  It's frightening.  I stay home most days because I never know how I will act or react in any given situation.  It's best to reduce the chances of legal or physical harm, so I stay home unless someone is available (and willing) to accompany me and swiftly deal with any issues. 

I am a liability and as a result require near constant supervision, and that breaks my heart.

Come Josephine in my Flying Machine

"Oh! Say! Let us fly, dear
Where, kid? To the sky, dear
Oh you flying machine
Jump in, Miss Josephine
Ship ahoy! Oh joy, what a feeling
We'll go through the ceiling
Ho, High, Hoopla we fly
To the sky so high

Come Josephine in my flying machine
Going up she goes! Up she goes!
Balance yourself like a bird on a beam
In the air she goes! There she goes!
Up, up, a little bit higher
Oh! My! The moon is on fire
Come Josephine in my flying machine
Going up, all on, Goodbye!

One, two, now we're off, dear
Oh, you, pretty soft, dear
Whoa! say, don't hit the moon
Oh, no, not yet, but soon
You for me, Oh, gee! you're a fly kid
Not me! I'm a sky kid
Gee I'm up in the air
Above you for fair..."

Last night was bad.  It was another "Just let me go...I want to die...you would be better off without me...I drag this family down...I'm tired...no more...please, just let me go..."

This morning I woke refreshed, reset, level, and ready to work on my goal(s) for the day, even though I'd clearly set none the day before because I wasn't planning on living to see today.

Going up she goes...up she goes...

Today is better.  I am a couple of pounds lighter, don't feel like dying, and managed to shop for food and drive about the city without incident.  The swings are hard to manage, but I'm here.

Right now I'm here. 

Depression

Depression continues - very down.

One moment at a time. 

That's all I can manage today.

Who am I?

Therapy today.  We discussed the new doctor and mood stabilizer (Lamictal).  I’ve been depressed…very down.  All things stop when I am like this – even self care.  I had to shower today because an appointment means that I must leave the house and be with other people who know how to live – who have the ability to live life with others.  Since my daughter left for college (and even prior to that), I have not showered.  I’m guessing at least 5 days.  This is not uncommon for me (or others in my present condition).  I am told that this will improve as symptoms improve with therapeutic medication levels.    

I have a long way to go.  My therapist assures me that I will get there, but it takes time.  I’m running on blind faith here.

We discussed things to this point.  I had it all – if you can call what I was living all; high-pressure career, appreciative clients, respect of my colleagues, all of which consumed my life for the last thirteen years; there was no balance.  I had nothing left after 5:00 p.m. 

Employers love people like me.  Our ultra-perfectionist nature is rewarded with ever-increasing work.  We are the all-too-willing community teat for the rest of the fucking slackers.  My therapist said (again) that she is shocked I made it as long as I did in that position/condition.  The unfortunate thing about employees like me is that we burn out in epic fashion, leaving the employer with a bit of a mess to clean up in the aftermath.  How many people will it take to do my job?  Well, I took some time off once and five people had a hard time getting shit done.  Stupid business practice, but I was a willing participant - always ready to please and please and please the unpleasable machine. 

We discussed my OCD, specifically my obsessive planning.  Some people can just go to the beach and enjoy.  I begin three days prior to that beach trip thinking about (in exhaustive detail) what to pack, food (recipes), parking, various routes to the location, cost, gas, how many people, does everyone have a towel, do we need extra sunscreen, what about the dog…packing the car two days before, gassing it up, first aid kit…

I said that I envy people who can just grab a towel and go – without a care – and enjoy the day.  I suck the joy from everything before we even get there.  I do that with everything in my life.  Everything.  I just clicked my teeth for every word written on this page.  I will make sure that the windows are up in my car eight times before I exit.  Everything I do is obsessively and compulsively regimented.  Everything. 

Once my moods have stabilized, we will begin to discuss me.  Who am I – really?  What makes me happy?  What do I like to do?  I've discussed this before; I do not have the answers to these questions – I never really did.  I was all work and that nearly killed me.  I’ve never asked myself these questions.  Why bother?  I was already dead.

My homework is to set a single goal each day and follow through.  Today, I showered.  Perhaps I will do something else.  I will note these accomplishments and do the same the next day.  If I fail to accomplish my goal(s), I am to focus on what went right, NOT obsess over what went wrong.  I have to learn that the "to do" list never ends.  I will never finish it.  Deadlines aside (another discussion) it is ok to leave things for the next day.  When the list is finished, you are finished.  That is life. 

My response to this homework assignment was a deep, tearful breath.  It’s like starting over from infancy with crawling, speaking, walking … and so on.  I crashed.  This is the bottom.

It is a long goddamn climb back to uncertain territory.  Will the view from the top be the horror that I remember?  I am not accustomed to not knowing how things will progress, so this work is particularly painful for me.

My car needs gas.  I haven’t pumped gas in weeks.  The last time I tried to pump my own gas I kicked the ever-loving dog shit out of the gas pump (and injured myself) in a manic fit of rage.  I have set a goal to gas up the car, by myself, again today and see how it goes.

Right now. 

    

Darkness

D A R K N E S S

Periphery of shadows

Overtaking, suffocating

Obstacles wound

Deflating, soul grating

Farewell momentum

lost my way

Flailing through gloaming

Combating the gray

Here to crash

Silently slip away

Spare loved the pain

Another tormenting day

- tmr/j (06/20/12)

Fresh starts, sputters, and stops

My daughter left for college.  The time leading up to her departure (and for a good twelve hours following) were the hardest moments of my life.  I cried nonstop for 28 hours - gut wrenching, ugly-faced, full-body-involvement sobs, wails, screams - and some stifled moments when I was in her presence.  At one point my husband begged me to take valium to ease the pain, and I agreed.  It helped, but not enough to stop the grief of saying goodbye to my only daughter - my youngest child.

I probably needed a good cry.  I rarely cry.  It's not in my nature to let go like that.  Eventually I gave up - utterly exhausted - and drifted off to sleep with my husband holding me tight.

I woke the next morning (my daughter about 5 hours into her 16 hour drive) feeling spent and ready for the next step - finally meeting my new doctor for meds discussions.  No more Lithium and Risperidone.

Driving to the city is always very stressful for me, but I managed.  I arrived early, scoped out the place, decided on parking, went up to the office to double check the appointment time (a bit of OCD was showing under my hoop skirts there), and went for a quick lunch salad.  After lunch I arrived early (of course) for the scheduled appointment.

It's always hard to start fresh with someone new.  Its hard to tell your story AGAIN.  I tell it so often that I wonder if I should just write it down and provide a written copy ahead of time for new people - just to save a half hour and most of my sanity.  It's hard to tell The Story; it drains what little reserve you have in the tank. 

The doctor is only there for med management and accepted the prior diagnoses without question.  He prescribed Lamictal (what my therapist wanted me on from the start) and I took my first dose that evening.  I have several issues that require medication (he said I will likely be on 4 total), but suggested that we start with one med at a time and add others on as we go - just to be sure that we know what to blame in the event of any sort of allergic reaction.

 Fresh start.

I woke this morning feeling relaxed and loose - not much in the way of pain or worry.  I spent most of the day like that and then at around 5:30 this evening, the shadows crept in; slowly at first and then all at once.  They (the feelings of doom) are very much like shadows in the corners of my vision, taking over my body...surrounding me...suffocating me...and eventually taking over completely.  They fill the room. 



The depressive side of bipolar disorder is a very dark place, and I hate being there.

  
I am very impatient and waiting for this fresh start to make a difference - over the course of many, many weeks AGAIN - will be difficult for me.  I just want to be better now.

Then again, what is better?  I don't have a clue.  We have to find out what normal is for me, because I honestly have no idea what normal is; I have nothing to draw from for normal.

Now we wait.  We have to titrate up slowly with the Lamictal to therapeutic levels to avoid any potential adverse reactions, the most serious of which is a skin rash which, in some cases, is fatal.  http://www.lamictal.com/    

Meanwhile, I have to stay out of my daughter's room for a bit, and have plans to keep busy with other things until I am ready to clean that out.  It is hard to say goodbye.  It's hard to give her up to her own life, especially now.

Goodbye for now

I don't know which end is up.  My daughter leaves for college today and I am, to say the very least, a bloody mess.  It has taken much in the way of sobbing, bawling, uncontrollable scratching, shaking, a couple shots of Valium, and little wounded noises bursting forth from my soul to come to a place where I can say that this is good.  I raised her to do this - to go forth and start her life.  To be independent.  To use her talents to help others.  She has accomplished so much and come so far in her life.  This is the ultimate goal of parenting.  Unfortunately, no one prepares you for the intense pain that comes along with saying goodbye.  If I had been well enough I would have done more with her.  We would have spent time together - doing things. 

Time is over.  There is no time.  Time will now be spent loading a vehicle for the trip to college and checking for last-minute things.  No doubt we will forget some things.  No doubt I will lose my fucking mind when I enter her bedroom to clean and stage it for selling our home. 

No doubt.  That is the day that I will remove all evidence that she existed in this house (potential buyers demand a near clear slate).  The hard days will continue.

I am frozen in place - unable to move.  If I move time will move, right?  If I move events will happen faster.  I do not want that.  Time, after the brain, is our most valuable asset.  I am out of both.
  
The fact that I suffer from mental and physical illnesses makes this harder.  I'll admit that.  I know some parents who are excited to let their children go.  I cannot imagine being like that.  That requires a selfish side that I do not possess.  I do not live through my children, but my life has been spent caring for my children - to the best of my ability.  I did a good job, and took that job seriously.  I hope I did a good job.  They are wonderful.  Now is the time that I have been dreading.  How did it get here so fast?

Time.

I have things to do and everything is so much harder for me these days.  The pressure from others who do not understand how difficult even the simple tasks can be is tough to manage, but we go on and do. 

I'm off to go on and do. 

PEACE. 

Make way for the secluded island of misfit minds

dig·ni·ty  [dig-ni-tee]

noun, plural - dig-ni-ties.

1. bearing, conduct, or speech indicative of self-respect or appreciation of the formality or gravity of an occasion or situation.

pri·va·cy [pri-va-cee]

noun

1. The quality or condition of being secluded from the presence or view of others.

2. The state of being free from unsanctioned intrusion: a person's right to privacy.

3. The state of being concealed; secrecy.

I learned a very important lesson in this process.  If you want to keep your dignity and have things remain private ... forget it.  Nothing is ever private.  In spite of your very best efforts, someone tells another and yet another embellishes the story and a few more add to the telephone game and then ... then you're sunk.  When the game makes its way back to you, and when potential employers get wind of your "mental illness", you're cooked.  The only answer is to pick up your hoop skirts and leave town with your head locked in a barrel.  Head for the hills, sister.  Make way for the secluded island of misfit minds.

Fair?  Fuck no. 

In my next life I choose to avoid mental illness.  However, if I must have mental illness, I also choose global deaf-muteness.

 

Down the rabbit hole

I have reduced my psych medications to zero as if this evening.  In doing so, I have increased my mania ten-fold.  I should be hospitalized right now.  I am relying on Valium to get me through at this point.  Valium and avoidance.  I keep away from others to keep them safe from my razor tongue.  The shit that I say doesn't even make sense but I am tearing this family apart with every slice. 

I will burn it all down if I allow myself to think about it for very long.  I'm in here - deep in here - and it HURTS to be me.

I have lost so much, all at once, that I have no idea which end is up and the losses continue.  My only daughter will turn 18 in another state, away from me, just as she turned 16 in another state - without me.  It is probably for the best because I have been most unkind to her and I DO NOT MEAN TO DO IT, but there is that damn razor tongue again.  The little bits of buried me are powerless to the force that is mania. 

It's bad.  The medication was bad.  This is bad.  It's all bad.

Monday - new doctor - please hurry.   

 

Jeeeeeeeeeeeeeeeeesus

Mania.  This is it.  Bloody screaming, crazy, out-of-control, shaking, running, speaking very fast, racing thoughts, see a knife, cleaning the counter, yelling, spitting, stomping, throwing, breaking, slamming doors, insulting, warning, yelling to others to go away and not witness....no, really - go away and do not watch this. 

Really.

Valium down the hatch.  Safe in a room under a blanket.  Trembling.  It will pass.  Very soon.

EXHAUSTION

I have never experienced an exhaustion so complete and all-consuming as the one I am in right now. I would describe it, but I am so, so, so tired.  I told my husband that I should be in a hospital.  Instead, I am resting, drinking plenty of water (if I can), and eating healthy. 

I spent the night hallucinating.  Every single second of the evening, overnight and early morning hours (awake or asleep), I saw odd things - things that definitely were not there.  I am reducing my meds to zero in preparation for changing them next week.  My choice because I know that they will be changed and know that I want this fucking poison out of my body.  Immediately.  I want the weight to start falling off.

I am angry.  Angry that someone would ignore my pleas regarding the ill effects of an ancient medication and continue to up the dosages.  I am angry that someone would send me to a place with criminals for intensive treatment.  I am angry that someone would care so little about solving the puzzle that is my health.  That is the job - solving the puzzle.  You don't have to like me, but you DO have to be invested in solving the problems -THAT is why I paid your fucking amateur ass $1,000 an hour.

Bitch.

It is time to rest my head.  Monday - and my appointment with an ACTUAL DOCTOR - can't get here soon enough.

UPDATE @ 4:35 p.m.:  My head has been POUNDING all day long and nothing touches it.  The only thing I want is fresh air and a place to rest my head.  Food?  Fuck no - I'll puke. 

I haven't had the energy or desire to shower since Friday.  I don't remember when I last brushed my teeth.  If I even attempt to do either one right now I will vomit.  If I had a shower chair - perhaps - but the act of standing under pelting water makes me ill.  Toothbrush and toothpaste in the mouth is an automatic boot. 

One thing is clear, the medication, while old and goddamn sucky, was doing something.  I have been VERY manic today, in spite of the headache.  Irritability is off the charts.  I am unable to do anything but be a bitch, hold my head, and allow my heart to beat. 

Off to bed.  Again.

Aftermath

Yesterday was rough. Very rough. I am still in a state of shock. I met with my therapist today and she apologized a hundred times - had no idea that the program I entered yesterday lumped criminals and addicts together with people like me.  It was not her decision to put me there so I gave her a pass.  The rest - fired.  Done.  My therapist agrees and understands.

I'm ok.  My therapist said that I disassociate when faced with very difficult situations.  I kept it easy today - no challenges, no triggers.  I also have a private psychiatrist and will see him on Monday.  I reviewed his available resources and they impress me.  He seems to be just what I am looking for - a partner in my care. 

I have been physically ill today (dealing with other health issues at this time), but took a nap and that helped a great deal.

Not much to report today.  Yesterday was so traumatic that my brain is just too tired to function right now.