Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Monday, February 16, 2009

What Bipolar One Means to Me

Please feel free to add in your ideas to the comments (or if you get as carried away as I did, your own blog) on this.
 
Since writing my last post I keep thinking about an extension of what I was saying.  Bipolar isn't just a word to me.  Bipolar is something I live every minute of every day, even while doing well.  Bipolar the way I have it isn't just a list of diagnostic characteristics, and it isn't just a med or two every day.  This may sound negative, and it's not meant to be, it's just that when I read about that author feeling restricted by meds that she takes "when needed" because she can't fly a helicopter, I just don't think it's remotely the same.  And I'm not picking on her, lots of people say and are told they have bipolar.  But it's very different when it messes with your whole life.  However, to make this even, in the next day or two I'll try to do good things about being bipolar.
 
Bipolar is:
  • A history of behaviors I refuse to even think about because I've embarrassed myself so many times
  • Hurting people I care about because I get moody, I get paranoid, I get very angry for no reason and I go after the easiest targets, even though it makes me hate myself
  • Regretting on a daily basis choosing the profession that I love, a profession that required 20 years of schooling and which I will be paying for until I am in my 50s because it is not a good fit with my symptoms
  • Knowing that side effects of my meds will keep me from doing my 2nd or 3rd choices of replacement careers
  • Giving up my dream/plan of a PhD because I'd fail out of school even with accomodations, and I don't have the energy
  • Feeling sad that I love what I do because I know I probably won't do it as long as I'd like
  • Knowing that every day, every month I work in my field is a huge gift, because I had promised myself my last job would be the last in this area, but I was well enough to keep going a little more
  • Being fired for reasons that were unfair and had nothing to do with me
  • Having had more than one job where everyone hated me
  • Extended probation at my 2nd job in a row
  • 20-30 pills per day depending how sick I am and how bad the side effects are and how stubborn I'm being about them
  • Living with the memory of the day a doctor started to call the police to take me to the state hospital against my will, until I finally started yelling with the right professional words to buy time
  • Having had more than one fight with Dr. Mind about whether I needed to be in a hospital, something I'm terrified of
  • Begging to be considered for electro-shock therapy
  • Trying for years to get stable enough to have surgery to implant a device with a 33% chance of maybe helping my untreatable depression
  • Finding out how many severe med allergies and intolerances one person can have (7 major ones to date)
  • Migraines treated with tylenol because it's all I can take
  • Sinus infection after sinus infection because I can't take decongestants and eventually it just builds up into nastiness
  • UTI after UTI from a medication side effect
  • Cracked teeth from a mediation side effect
  • Spending 6 months vomiting from medication toxicity that nobody could figure out
  • Crying because the toxicity kept me from being able to talk, to communicate how I felt, and because my memory was damaged
  • Out of 8 years and 2 months of employment spending 9 1/2 months on disability
  • Having little memory of most of that time
  • Having my boss tell me that a contract no longer wanted me, essentially because they thought I was "crazy"
  • Having a family at a nursing home ask the administrator if I was on drugs
  • Walking around with a tongue like a snake for a month because of extra-pyramidal syndrome
  • Having to fight doctors to take me seriously, no matter what is wrong with me, unless I'm very careful who I see
  • Being treated like a drug addict because I take narcotics for anxiety and to overcome the sedatives
  • Taking meds that have destroyed my thyroid and damaged my kidneys because they are the only way I can live
  • Being part of medical research because someone has to so there are effective treatments for this thing
  • Having few friends and even fewer who understand at all
  • Losing the best friend I thought I could ever have because my illness "wasn't Christian"
  • Being unable to have any caffeine.  Ever.
  • Being proud because I only saw my therapist 42 times last year.  Two years ago it was 75.
  • Having my own bottle of non-alcholic sparkling juice at holidays with wine.
  • 4 years of being unable to listen to music
  • 8 years of seeing almost no movies or TV shows because they are too stimulating
  • Crying in public over nothing
  • Gaining 90 lbs on a very small frame thanks to medication, 60 of that in 1 year, 40 of it in 3 months and knowing I have to keep taking the meds anyway
  • A time I barely remember when I was so sick and nobody knew what was wrong and I had to diagnose myself and then find appropriate help
  • Knowing from experience that some doctors will treat things they aren't qualified to treat
  • Having had doctors make me worse, for the rest of my life
  • Living with the knowledge that sometimes I'm suicidal and I have to be responsible for telling someone and doing what makes me safe
  • Knowing that suicidal comes sometimes from small things, not the major episodes and that those are the most dangerous times
  • Being terrified every single time I have trouble falling asleep because it might be the beginning of the next big episode
  • Freaking out if I'm sad, even if I have a good reason, because it could be major depression
  • Annual out-of-pocket medical expenses topping $10,000
  • Medical professionals refusing to respect me even though I AM a medical professional, because I can't possibly be able to think for myself
  • 2 hours of driving per week to see Dr. Mind because he's the best psychologist for me right now
  • 4 hours of driving per month to see Dr.Brain because she is the best psychiatrist for me right now
  • Knowing that if I get sick my short-term disability excludes mental illness because it can
  • Living with insurance that excludes mental health except a bare minimum that is nothing if you are chronically ill, even though it is a physical illness and not caused by a bad decision (yet injuries caused by my driving drunk would be)
  • Begging politicians in emails to do something about mental health coverage.  Being ignored.
  • A week spent on sick leave due to a rash that if untreated can be fatal.
  • Half-done projects everywhere because my attention span is limited
  • A messy house because I have so little energy
  • An inability to work full-time anymore, and I'm only 33
  • No chance of having children because I will not pass this on
  • 10 years of my life gone to severe illness that I will never get back.  I was a college junior and now I'm this adult who is suddenly coming out of a coma
  • So many annual blood draws the plebotomists all know which vein is the good one, and the puncture scars never have time to go away
  • A very high risk of diabetes just from ingesting the medication that lets me function
  • Two years of being afraid to shower and not be able to hear what's going on, resulting in alternating showers and sponge baths.  Even now having fears of showering sometimes.
  • A crappy credit score because I'm just not great at responsibility
  • Summer "lockdown" because heat is dangerous with my meds
  • Experiencing substantial hair loss from a side effect plus my damaged thyroid, which has taken almost 3 years to grow back
 
It also means some positives:
  • More empathy for people with all kinds of disabilities and losses
  • As much as I hate to say it, I' much stronger for having survived
  • It's the only way I learned assertiveness
  • I get to see a real miracle in my own life.  More than one.  I'm alive.  I'm in remission and I had so little chance of this.
  • I take little for granted
  • I have this blog, and the friends I've made from it
  • I know who my real friends are. 
  • I appreciate every minute I spend in the sun, every hour in my garden because they are limited
  • Doing dishes is a major accomplishment and I know it
  • Every so often I can clinically help a patient because of my own experiences
  • I have had to be stronger than I ever though I could and I've had to trust God and other people more than I thought possible because when you only want to die that's all you can really do
  • I know how to think things through differently.  For example, I have a very effective suicide-prevention method that I created with some help from friends and doctors, and it has kept me out of the hospital, against all odds, for years.
  • I shower regularly now, and I know that is an accomplishment
  • I never take my career lightly
  • I have fewer worries about the future than most people because I just can't go there.  Retirement money?  Hah.
  • I don't take my appearance for granted.  I was never really pretty, but being so overweight and having nothing that ever fit right while my hair looked weird because so much had fallen out changed so much.
  • I have a lot more self-control than I did even before I was sick. 
  • I'm not as sick as it looked like I was going to get not so very long ago.
  • I am a symbol that medical advances can help even the people that today can't be helped.
  • I've somehow been given the title of my doctor's "highest functioning for the severity of your illness ever" patient.
  • I found good medical help.  It saved my life, and I have doctors who are dedicated to me.  The entire group of them work together, showing that the entire medical world isn't irreedemable.
  • I never waste money because I have none!
  • I'm probably healthier from having no caffeine. 
  • I'm certainly healthier from never drinking, not that I did before anyway.
  • I'm so much better I'm coming off meds, and I'm losing weight.
  • I've proven that feistiness and willpower can keep you out of the hospital, if applied correctly to the right person.
 
There's probably more, but it's late now and I have to sleep.  Should have been asleep hours ago.  Too anxious I guess.  Or manic?  (joke,but see?)






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4 comments:

thordora said...

Amen. Every day is a crap shoot, a struggle, and a miracle.

I do wonder what it will take for doctors to realize those of us with BPD might actually be able to help ourselves and have something constructive to add.

srk said...

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Emilija said...
This comment has been removed by the author.
Emilija said...

Bipolar is definately part of my story- my life doesn't make sense if you don't know that about me. I spent so many bad years not living. Why I only started my career in my late 30's. Why there is no husband/kids. Why I weigh what I do (thank-you Zyprexa). But I have to say, I am getting to the point where I don't think about it much of the time- I don't think about being mentally ill. Taking my morning and nightly meds is pretty much habit. And yes I see a psychiatrist, and have to "manage" myself more than most people, I suspect. I have learning disabilities that I have to compensate for, and kind of see bipolar in this way. It is just that part of me that means I need to manage stress, not drink much, get sleep, accept that I cannot clean my house (and hire someone). At the same time, I increasing don't think about being bipolar. I hardly ever think about it at work-unless it is in a helpful way, dealing with a patient.

Being where I am, after 13 hospitalizations, 7 years on disability, 30 medications, and almost 2 decades of misery- and being as good as I am now- it is taught me that anything is possible. But I also didn't start getting better until I started directing my care a lot more, and stopped leaving it all up to the psychiatrists. To think where I have been and where I am now, it is amazing. And yet, every now and then I have a down day, a difficulty, a problem, and I start obsessing, and I wonder how little it would take to strip all of this away from me? To take me back to where I was, to lose it all? I do have that little worry inside at times.