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. 

     

 

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.