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.