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.           

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. 

     

 

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.

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.

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. 

    

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.