Category Archives: Disabilities/Health

Combatting Bipolar Disease on a daily basis

Do you know that old time hymn “I’ve got the Joy, Joy, Joy, Joy Down in my Heart . . . I’ve got the Peace of God, Peace of God Down in my Heart”? Well for me, and I suspect, most BiPolar people, that just doesn’t track. The cynic, and the disease, tug me away from those feelings.

For me, a wellspring of sadness and despair coat my linings, much like that Pepto Bismol commercial. Anxiety flavors the mix. My heart is treacly coated with the stuff. I can be laughing, giggling, joyful even, and still can touch that pain and despair, still feel the anxiety. There isn’t any distraction from it. Even with a stable medication regimen, anxiety pervades my consciousness and dreams. I am haunted by Depression.

Amnesty International’s latest annual report speaks to a paradigm shift worldwide into Depression and Despair writes Mark Kerstan on May 27, 2017. I suspect much of that is normal despair, not the kind of thing BiPolars’ experience, but still, it’s a frightening fact.

Moreover, we need to continually monitor our frustration and anger levels as they are two heads on the same coin. Our emotions can escalate and drop at alarming rates and anger is a seductive release from the pent-up pain we carry within.

Coping strategies that work for some, may not work for others. Know them, read up on the latest research and articles, but ultimately you may need to pick and choose among them to find out what works best for you. Millions globally find much relief in Mindfulness Meditation and even though I practiced it for a year, I just can’t slow down the chatter my mind offers up. I have found reading and writing work for me. So does housework. Repetitive activities comfort others – coloring, sewing, cooking. Music therapy is wonderful. Some swear by Affirmations – put a poster of them up on your wall for you to tap into.

I do try to observe negative coping strategies and reduce or eliminate them. Some practices simply serve to agitate me further. I look for something that works better. For instance, when the sorrow and anxiety grow too uncomfortable, I look for someone I trust to unburden myself upon. It sounds crappy, using someone like that, but I try to respect their decision to not listen when they choose or need to. If they accept that role, unburden away, get that pain out of you.

Ask yourself, Do I want to be in control? Is that what is making me squirrely? Antsy unrest, obsessive thinking, and nervous irritability are symptoms of Bipolar depression or mania, with possibly a co-existing anxiety disorder. Everything feels hopeless. The mountain is too hard to climb and I’ve run out of power bars and water. Or my body is too handicapped to even begin the walk, even on a flat surface I am limited. For me, its a sure reason for anxiety and depression. I hate my limitations. Fear builds because I see the never endingness of my life situation.

And don’t even get me started on Money, maintaining friendships, or dreamed of escaping, having sustainable, or any, social life. Seeing and being all those things I dreamed of escaping – sands through the hourglass – fear builds. Just the daily stress of life can prove too anxiety producing.

What it boils down to is relatively simple. Find coping strategies that work for you. Keep seeing a therapist. Talk to others about your feelings, keep on the right medication regimen for yourself. Practice Humility – give up the need to be in control. “Let Go and Let God”. Radical acceptance – forcing yourself to see things as they really are (although I sometimes prefer living in my fantasy world), and not as they should be, is a trending treatment. Pray – turn your burdens to a Higher Power. When I do that I experience a measure of peace for a while – and then have to start all over again.

Even with all the helpfulness available to us, we BiPolars have to realize that we have a Disease that is not going to magically disappear. There will be good times and bad. We just need to find our way through the morass and use the tools that work for us.

Advanced Directive for Psychiatric Issues

In the article, “When Treatment is Traumatic” by Melody Moezzi in the Fall 2016 edition of Bp Magazine, I read something I had never considered, that of needing Advance Directives for one’s Mental Health and a detailed crisis plan. She discussed having had good hospitalizations and bad ones. And, that we can specify which mental health facilities we want to go to and vice versa.

Included with that was we have the right to specify what drugs we do not want to take and treatments we do not want . . . ones we may have had adverse reactions to in the past when physicians and psychiatrists may not have access to that information. She also speaks to vetting your own psychiatrist . . . research the person, interview others who have had that person, interview that psychiatrist before committing to sharing your deepest secrets with him or her. She reports this cuts down on the trauma hospitalization may cause.

Accordingly, I did a little research about PAD’s (Psychiatric Advance Directives) and some of the present problems within the system now. One good instruction manual for the development of your PAD is at:

It answers the questions you may have about how to go through the process of specifying your needs and writing them down. It explains the legal process and what your rights are.

As Duff Wilson says in the December 11, 2009 issue of the NY Times, this can help protect poor children who are presently likelier to receive powerful Antipsychotics than treatment and therapy because the latter are more expensive. In fact, poor children are 4 times more likely to receive powerful anti-psychotics than middle-class children who have private insurance. Medicaid may push for this but just remember – you have the right to push right back. An educated consumer has the right to Appeal and make informed choices even when on Medicaid. These drugs have long-standing to permanent metabolic changes and drastic weight gain. It stands to reason the same factors may apply to adult psychiatric patients.

The David L. Bazelon Center also speaks to this issue. Patients may be restrained, seclusion, forced hospitalization or receive forced treatment and medications if they do not have a standing PAD. We need to have copies of our PADs at our Pediatrician or Primary Physician and/or Psychiatrist as well as with our Mental Illness Medical Advocate. Many times earlier intervention can eliminate the need for such serious and draconian measures. Many times our Primary Care Physician administers Psychiatric drugs because there is too long a wait for a Psychiatrist and treatment is necessary. However, they rarely have the training to make such decisions and so may administer the wrong drugs because the family or physician feels it is necessary or that they don’t have other options.

David L. Bazelon Center http://www.bazelon.org/Where-We-Stand/Self-Determination/Forced-Treatment.aspx
 
Another factor for consideration is because family counseling or psychiatrist counseling sessions are more expensive, Medicaid may resist paying for them with poor patients. In other words, we are discriminated against, something that should come as no surprise to most of us.

A couple of final things:

UPENN Collaborative on Community Involvement
A Guidebook for Creating a Mental Health Advance Plan or Psychiatric Advance Directive
http://www.tucollaborative.org/pdfs/Toolkits_Monographs_Guidebooks/self_determination_psychiatric_advanced_directives_self_directed_care/ASAP_Guidebook.pdf

This organization provides a 32 page document covering all aspects of preparing for your mental illness needs in the future but in easy to understand terms. Not all of which may be directly relavent to you personally. Neverthless, it is a useful reference to draw from as you create the document that suits your exact needs. Just remember to periodically review your PAD because your needs may change over time.

There is also the DBSA Wellness Toolbox – “[A] Collection of self-help and wellness tools to help you communicate better with your doctor, keep track of your symptoms and moods, record the progress you’re making and help you reach recovery.

http://www.dbsalliance.org/site/PageServer?pagename=empower_toolbox

I have a Living Will but you can bet I’ll be drawing up a PAD ASAP.

 
 

Working Within the System

Why is it so hard to fight for our rights? As Disabled persons we have a greater need for services than many but either by our own inabilities to disseminate the proper information to the proper authorities, coupled with, the inflexibility of a system that has fewer and fewer resources and people who are not properly trained to handle our population . . . nor necessarily have the attitudes and empathy to know that, for most of us, our mistakes are not our fault.

I am on disability and lost my benefits January 1st, not because I was trying to beat the system but because I couldn’t understand and follow the system. There is a chance my benefits will be reinstated, of which I will be eternally grateful if they are but there is still a huge, dark cloud floating above me. I need to appeal to nullify the 16+K they have been sitting there watching for several years as it accrued without my understanding of the system and my repeated thinking “Surely this will be okay, am I doing anything wrong?, if they haven’t contacted me, I must be okay.”

It took every bit of my courage and preliminary preparations to handle the 2+ hour interview but I did it. As I was sitting there, my legs were cramping continually and I had to stand as I was talking to her, my neck and back were in pain, and my skin was itching all over. This as I was telling her the diseases and conditions which brought me there in the first place.

I still have to go to an Accountant for the first time, at a cost I can ill afford. And the Appeals process still needs review. Finally, I am locked into a set amount of money. If I go over it by even a dollar, I lose my benefits . . . for good. So, this case I am working on, I can’t earn more than that amount and I often have to work extra hours so those hours will be for free.

There was a time, years ago, when my mind wasn’t as impacted as it is now, that I had to have the school districts I was working in to pay me $2 less an hour than was contracted just so I could work the hours needed.

Yes, I am Disabled, but I need to be a productive, contributing member of society. I need to be of service. I need to help people, and I know there is a purpose to my work that God has in mind for me. So I struggle through the morass of the system, hoping they see I am worthy. And pray – a lot.

Climbing out of the Trough without going into Mania

For a couple of months I have been a bottom feeder, living in the Trough of Despair and Discontent. There are profound reasons . . . . I lost Social Security, need to find another car, am missing my children and having a hard time reaching out to others, had a major car accident and am afraid of myself behind the wheel, the list goes on. But I am trying to climb out of this pit of despair. Sometimes it works, for moments. But for now I have to content myself with baby steps.

It’s time for a transition to a more normal path. Much of that involves taking care of business. Pulling together the information necessary to Appeal to Social Security, looking for a car in the usual sources, making an appointment with an accountant so this doesn’t happen again, and being responsible. The last being a near impossibility. Lastly, adopting a more positive frame of reference.

In doing some reading I came across an article entitled “5 Positives of Living with Bipolar Disorder (Besides Creativity). Its suggestions made sense to me:

1. Bipolar “Gives you strength, tenacity, or “Chutzpah”.
2. “It makes you more proactive about your overall health” – In order to ensure you are not living too high on the hog or existing in the pig slops, you need to make sure your medications are in supply (and taken as prescribed) and not in conflict with each other. Exercise, sleep, diet, meditation, and practicing spirituality are all essential.
3. “It gives you empathy for other people” – being bipolar and living with its stigma and side effects can increase your empathy both for other bipolar people and for the general population. We know how feeling bad works and we can understand how hard it is for others.
4. “It helps you know who your real friends are” – I know I have people that love me. I also know that sometimes they just don’t get what’s wrong with me even though they love me. I can be a bitter pill to swallow. But there are a couple of others who understand or have the disease themselves.
5. “It gives you the ability to help others who have the disorder” – That’s the wonderful thing about Prime Time. It’s one for all and all for one. We try to be there to support each other.

The creativity factor can’t be ruled out either. According to some researchers, 30% of bipolar people are more creative than the regular population. This is often during Manic phases of the disease although some of my best poetry was written when I was in the trough. The trick is to avoid the suicidal side we can be subject to.

As Lynn Rae has said, “Focus on what you can do; not on what you have lost.” You will have a greater chance at happiness if you focus on your blessings instead of your heartbreaks.

The 5 positives were developed by the “Advice and Support Community:, a group of volunteers at the International Bipolar Foundation.

Shoveling the Crap

We all have experienced the tragedies, mania, depression and despair of this disease. Lately, I have been going through an extremely stressful time, regrettably of my own making. My mind is spinning like a top, panic attacks are frequent, almost daily. Depression is manifest, my sleeping patterns are erratic. More and more pressure and repercussions keep coming my way. And knowing I created this mess is truly devastating.

However, I have picked up the shovel and am slowly digging myself out. It is time I became a solidly responsible adult. I try to project an image of competency but it isn’t always working and I am so embarrassed that I don’t want to talk about it much. I don’t want to put the burden on others so I only share with a couple of people. But I am sharing and that counts for something.
Being in that pile of poop is truly a tough time but I am trying really hard to do certain things:

1. I take courage in the fact that more bipolar people are creative than those in the regular population.
2. One Step at a Time – I can only succeed that way. Whether my mind is spinning out of control, I can only move one step at a time and doing it that way begins to slow my mind down
3. Compartmentalize – realize I can only do so much, in a certain order, and each hillock on the pile can be addressed without destroying the whole
4. Be good to myself. Bubble baths, oil treatments, kombucha, a good meal I took the time to prepare . . .
5. If all else fails, and I am worn to the nubbins’, take a nap, recharge.
6. Share with someone – it really does lighten the load

I have the ability to slow the spin, it takes a lot of effort, and the help of other people, but that pile of poop can become manageable.

Platitudes and Analogies

There are times I feel so alone with these diseases and conditions.  It’s usually when I’ve been around “normal” people for too much time.  They just don’t get me and I’ve ceased to try to make anyone understand.  Sometimes I’m in a good space, sometimes not – but it is good to know I’m not the only one going through these issues.  I can get too wrapped up in my symptoms, people  tend to say things that don’t ring true for me.  I’m searching for some good analogies that get me through the tough times. See if they ring any bells for you.

When the going get tough – the tough get going. Don’t shrug your shoulders at that.  We are a tough lot.  We have t be.  Nobody can wave a wand and make the symptoms of our lives of our lives go away.  Medical Science has a way to go.  We suffer in silence or not, but WE are not the ones who have to go through this.  All the platitudes “normies” give us will not sufficiently calm us when we are in a rough place.  God bless them for trying, they just don’t understand what’s going on beneath our skin.

You can do it one step at a time. This is true. We can’t get out of bed and negotiate our days without moving exactly one step at a time.  Nevertheless, when our insides are racing and we can’t think a rational thought, when all we see before us is struggle, racing thoughts, nightmares and silent screams, you might want to backtrack, not move forward.  It is hard to bring ourselves to center.  We can do it, but not without skills and understanding.  And as much as we can, utilize the support people in our lives.  These are the people who understand where we are coming from.  Things will get better one step at a time.

You are the only one who can heal yourself. Sounds nice, doesn’t it?  However, we know we need help . . . even when we can’t reach out and get it.  I think it’s a phrase people say to absolve themselves of responsibility for ourselves.  We want to be self-sufficient, that is where frustration builds.  But sometimes we need outside intervention.  And though we are the ones who have to do the work inside ourselves, sometimes we need direction.   On the other hand, we are the conductors of the symphony of our thoughts, feelings, and actions that make up our lives.

Practice Joy.  When I am in the midst of adversity, joy is just three letters with no meaning.  I can struggle through the morass which can surround my life, but joy is something I rarely experience.  BUT, when I do, I rejoice in it and don’t take it for granted.  I don’t know how to practice it.  There is an artificiality in the word Practice.  I either wake up in a good place or I don’t.  Restarting the day sometimes helps, like when I look out the window and feel sunlight caressing my face on an otherwise gloomy day, its heat tickling my skin. Joy is a blessing always to be appreciated.

Nevertheless, there is always HOPE.  Nothing lasts forever.  Another Platitude but one of Truth.  We can put one foot in front of the other and each footstep gives us a new opportunity to step out of bad spaces and, at the very least, come to center.  With help, spiritual guidance, and the support of those who understand, we can change our circumstances. One Day At A Time.

 

When do you say Goodbye?

She was by turns feckless or feral.
ferocious, fickle, self-centered.
Twelve years spent in her company,
unable to respond or defend.
captive, as she came to visit
several weeks at a time,
several times a year.

Schizophrenic, Bipolar –
voices keeping her company
more than her devoted husband.
Her only caregiver –
he wore himself down
to bare nubbins.
And I worry now he will soon
follow the same path.

She appropriated my life
told me there was a cancer in me
she had to cut out.
Humiliated me in front of family
relatives, her friends – while they lasted.
Spoke in a foreign language
my husband wouldn’t teach me,
about me, in front of me,
my knowing the words were directed ,
about me, in front of me.
Told my children she
was their real mother.

She died last night,
first came mourning,
now rage . . .
It’s been 20 years since I have been
her daughter-in-law,
since I have seen her except
when my children married,
or graduated from schools.
And even in these years I treated her
with a consideration and kindness
rarely shown to me.

This woman who made my life
miserable, terrifying, unstable –
who did so much to ruin my marriage –
twisting, turning truth,
confusing my children,
angering my husband so he wouldn’t
speak meaningfully to me for months.

Who twisted my children’s
understanding of Mental Illness,
refused medication or therapy,
made her husband of 60 years’
life one of horror and despair,
beating and berating him,
listening to those damn voices . . .

After all this time, and I mourn
for her, for my children,
for her husband and my ex-one.
Mourning the woman she was
and could have been
if she had accepted her diagnosis.

Listening to her voices . . . .
Still feeling a relative,
Mourning the loss,
even as the rage pours in.
Some nightmares you never forget.

Social Security Disability – Living in the System, or not

How many of us live terrified about money?  Not understanding it. Not knowing how to utilize it productively. Money is a vague anomaly, something that, for some, is easily quantifiable, for others a mind spinning process that brings little comfort, little stability.

I look at numbers and my head spins. That portion of my brain which controls numbers has permanently gone on vacation.  Has always been basking in the suns of Antarctica.  My father used to help me with math homework until “Modern Math” was established.  He bought a book on the subject and I remember nights when both of us would be crying trying to figure it out.

When I was a Paraprofessional in the schools, kids in grades 4 and 5 quickly learned to go to someone else for help.  If they needed to write, do geography, jump through hoops, learn history, read, they knew to search me out.  Math?   Computers they taught me. Why get things marked wrong when help had been asked for?

I have always found myself in trouble with my finances.  This year I am facing problems way beyond my abilities.  I was on Social Security Disability, very deservedly so. I was not one of those milking the system . . . I am someone who doesn’t understand the system. Never good in Math, Traumatic Brain Injury made it even worse.

I work as a caregiver/CNA.  Some cases are paid out of pocket, some as an employee, others as an independent contractor. Trouble is, how do you keep course over a year, month by month, week by week, what is too much or not?  How do you tell a client you can’t work for them anymore because you just discovered they are going to start paying by another format?  How do you handle it when someone, in June, decided to pay out of pocket but in January, determined a 1099 would be more to their keeping?  It isn’t a fair system. I know, I know, who said it had to be fair?

I don’t have the ability to work 40 hour weeks, if you can find a job that gives you that. Even 20 hours can, many times prove more than I am capable of. I am in a great deal of pain on a constant basis. I need the benefits offered to the disabled – the medical benefits.  I don’t abuse the system. I don’t use Food Stamps or other benefits because I pay for them myself.  I need Medical Benefits and to qualify for Social Security. I’ve never filed for unemployment benefits or welfare.  If only Social Security helped you understand the process and then, if needed, provide the help necessary to comply with in the system.  The system would be so much more organized and understandable then.

I contributed to the system for many years.  To go from being a national Business Management Consultant in Human Resources and Management Development to someone on Social Security over the course of a working timespan is humbling. What many don’t understand is, the vast majority of the working disabled are trying the best they can.  But they are in a system that penalizes you if you work even slightly over the set limit.  Problem is, you don’t know in the beginning of the year what your earnings will be, or maybe in what form as in my case.

So now I am not on Social Security. I need to apply for re-establishment which can take 3 years if granted at all. To obtain it I need to work less or not at all.  If I work not at all, not having Social Security, I can’t pay my bills or eat.  My family is talking about taking me in to their homes. I’m 60 for God’s sake!!  As much as I love them, I don’t want to live with them any more than they want me.  This is the American culture where each generation provides for itself and lives separate from the others.  It would be one thing if we did things the natural way and lived multi-generationally but we are not, and don’t have that thinking pattern.  I have lived by myself for almost 20 years.

So tough choices all around.  Happy New Year! (and I still don’t understand the system)

 

 

 

Heroes

We need heroes. Tangible, real people who stand out and speak the words we dream to say, think in ways which wrap imagination into a spinning swirl.

Those of us fortunate to be blessed with Bipolar are certainly in need and lately, there seems to be an emergence of  more media focus, more actors and other people of prominence who are not just announcing they have Bipolar but are creatively working to generate attention and understanding.

We lost one of these this week.  Carrie Fischer was a strong-willed, at times, in your face, person brimming with life.  Of course, she had her low times – she couldn’t have this disease otherwise.  Richard Dreyfus is another shining example. Creative, a driving force who has known both sides of the equation, he is a brilliant actor.

There are so many of us out in the world.  I can often see someone somewhere, watch a bit, and know she is a compatriot.  And she may  seem not to know she is in the midst of the symptoms of Bipolar or even that she has it.

We need to not feel ostracized. To be able to feel the stirrings of strength within us.  And sometimes maybe we could benefit from having posters on the wall of those Bipolar Heroes who we see as champions, ones we can look at saying “If she can, so can I.”

There is no sin in having Bipolar, only to know you have It, only in having it and not doing anything about it. Your choice,  acceptance and action – or – misery.

We Are Not Our Disease

I was recently in California, visiting a dear friend. She was crushed because she realized the Depression she had lived with for years was, instead, Bipolar I. A lot of her feelings were based on the fact hat her husband of 11 years has severe Depression/Bipolar.   She was the one who always took care of everything. The previous several months had been very hard on her. She spent a lot of time in her bed; her therapist quit; she had her husband were building a house from the studs up. Her Mother of Conflict and her heavily drinking brother were making her life crazy and her Mother subsequently died.  Major factors were making her life miserable. However, I’m not the Doctor and while I think she’s right – she bought a 27 acre, beautiful property against the warnings of her husband – she needs a trained professional to verify she , indeed, has the condition.

However, all of this got me thinking.  I had been in a down mood prior to going to California, but was rejuvenated there.  My moods shift more often than before.  Sometimes I can’t tell what mood I am experiencing. I thought I was only Depressed for years but while looking back over journals 35 years old, I noticed I was definitely Bipolar then.  Next, I started thinking of being Bipolar in general.  There are all sorts of nuances, facets, depths and ambiguity in Bipolar people. It looks different in each person and from day to day. There are things you can do to limit intensity like staying on meds and eating right.

We struggle some days, bounce off the walls some days, and feel great and balanced on yet other days (which might really be you are on a manic high).  But largely, we are like a lot of people on the streets and in the stores.  Most people in this world have issues of one kind or another. We don’t have to minimize ourselves just because of our disease. We are not our disease! We are human beings with scars and wounds, just like so many others,  I, for one, will try like hell not to wear my disease as a cloak around me, because I want to be as healthy as possible.  And I know most of us feel the same way.