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.           

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.