Mindful Monday – Mental Illness

Today’s Mindfulness Monday is not really quotes on mindfulness, they are mindful quotes on mental health.  There are more quotes than usual, I actually found over 30 that I liked and finally cut it down to these 7.  After each quote I will explain why I chose that particular quote.  I hope you will bare with me, as most of you know I’m working through a mental health crisis of my own, and working on this post has helped me feel not so alone.  ***Please note that this post contains a frank discussion on mental health issues including suicide ideation.

“Beautiful fake smile.

All it takes is a beautiful fake smile

 to hide an injured soul and

they will never notice how broken you really are.”

~Robin Williams

I chose this quote because we I often use a fake smile to get through the day.  Whether it be because of my physical or mental illnesses, that fake smile makes others believe I’m okay, and that makes dealing with the general public, and sometimes even those closest to me, easier.  I don’t have to explain, I don’t have to deal with the awkwardness…..the fake smile, is a shield I use to deflect the judgments from others.  

“Be proud of every step

you take towards stability,

no matter how big or small.”

~Jessica AnnHardy

I have been feeling like all the work I’ve been doing to overcome this crisis has shown little improvement.  I chose this quote because it reminded me that even the smallest steps toward my stability are worth being proud of.

“I’m still me no matter

my mental health”

~Niki McBain

Earlier today I texted a friend how afraid I am that this is my new normal, all the anger, and simply being a bitch all the time.  I’m no longer a nice person.  I told her, “I feel like I’ve lost Wendy”  I chose this quote simply because it reassured me that Wendy is still in there somewhere.

“It’s exhausting to fight a war

inside your head

every single day.”

~Mickie Ann

If you don’t have a mental illness I don’t think you can ever understand this quote, if you do, I doubt I have to explain why I included it.  This constant battle going on in my head is driving me insane….or perhaps I’m insane is why I have the battle in the first place….these are the kind of questions that bombard me all the time lately.  Every… Single….Day

“Surviving a psychiatric crisis is one thing.

Overcoming one is something completely different.”

~Chris Curry

I hope to somehow understand this, and hopefully so will my husband.  Right now we are in survival mode, overcoming it is going to be a long, hard process.  (I’m not sure it will ever happen completely)

“The bravest thing I ever did

was continuing my life

when I wanted to die.”

~Juliette Lewis

Okay, I’m admitting something here so other’s my hear my pain, and will perhaps not feel so alone.  Each day since this crisis began has been a fight for my life.  More than once I’ve thought it would be best if I were not here.  I’m not being selfish, of looking for the easy way out.  I’m hurting the person I love most, over, and over, and over again.  When I’m having the most severe emotions, rage, despair….and the psychosis (auditory hallucinations)  I cannot see that removing myself from this world would hurt him worse, I can only see that I’m causing him so much pain, and at that moment I believe that if I’m wasn’t here it would be better for him…and others I love.  I want to remove myself from the situation.  Actually, that’s exactly it, I am simply trying my hardest to get away from the war inside me, I simply need to escape.  The pain is just too great.  Please do not judge me, if you do, keep it to yourself, my psyche can’t handle it right now.  I am not in danger, my husband and my psychiatrist know about this and I’m being watched….like a child….I hate it.

”You know when you’re in a bad dream

and you’re trying to run, punch, kick, or scream,

 and your body just won’t move?

You open your mouth and nothing comes out.

You feel frozen or in slow motion,

 and no matter how hard you try to fight it,

nothing changes.

That’s how it feels to battle mental illness.”

~Evyenia

When I read this quote I thought….Yes!!  It is often like that.  I feel like I scream and scream and even when I’m making noise it makes no sense.  I’m stuck, I can’t get out.  I just want me back again!  There are so many people who feel like they aren’t themselves after they start their psychiatric medication, especially those who are bipolar I, like me.  I will admit, when I first started my meds I wondered if the changes in my moods were making me less….me.  I was losing part of who I identified as me, but after I was stable for a while I realized that the real me was the stable person.  I no longer had times of extreme mood swings, I no longer did so many dangerous things, I felt more in control.  Yes, I missed being able to pain for days on end, I don’t feel I’ve been as creative, and I miss the times I could read 2-3 books in one day, but I don’t miss buying a car I couldn’t afford, or having sex with someone and not remembering it, or losing days that I don’t remember.  That wasn’t me.  When I’d relapse, which has never been as bad as this crisis, I’d run to my doctor immediately for help.  I didn’t like that feeling at all, I was suddenly not me.  And suddenly after 20+ years, I’m having a severe crisis.  It scares the hell out of me.  I will say, I think I’m better today than I was 2 weeks ago, but I still have a long way to go.

I just want to be Wendy again.

***by the way, the photo above is a self portrait I took a few years ago.  I haven’t been in the mood to take many pictures lately, and I felt this photo was appropriate.  (all right’s reserved)

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I don’t mean to….(fighting depression)

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I don’t mean to stay away.

I don’t mean to make you worry.

I walk around in a daze lately, and can’t see through the fog.

I feel like I’m lost in the dark and the only lights I see are from the flames of hell.

I can’t tell  you why.

There is no real reason.

Sometimes I feel like I’m a pawn in someone else’s game.  I can see two demons hunched over a game board, we are the pieces they move.  We have no control over how the game is played; we can only hope they play fairly, but we all know that demons never play fair.

How can I feel so level headed and focused at one point and so out of control and totally depressed at the next.  What changed?

Sometimes the answer is “nothing”.  Other times, the answer is more complicated, but the thing is, it’s really not about what has happened on the outside, it’s all about what’s going on on the inside.

Right now I could actually write a huge list of things that have changed in my life, but none of them explain the extreme changes in my emotional state.

I’m not “letting things get to me”, nor am I “too sensitive”.  I’m falling apart from the inside out, and it has nothing to do with anything I am doing to myself.

Damn! Does that sound as stupid to any of you as it does to me?

I get so pissed off when someone tells me that they wish I didn’t let things get to me so much, or that they wish I wasn’t so sensitive….yeah well…yadayadayada.  I guess, it is all on me, isn’t it?  But then again…is it?  If it were up to me I sure wouldn’t allow things to “get to me”, and I wouldn’t be overly “sensitive”.  Heck, if it were up to me I’d be pretty friggin’ stoic sometimes, but I’m not, I simply can’t be like that.  I feel things, very deeply sometimes, I actually envy people who can “bury it” or “put walls up”, I can’t do that.  I’ve tried, oh how I’ve tried.  I really do envy those people…..sometimes…like now…not always.

Lately, all I want to do is eat, sleep, and cry.   In reality I’m not sleeping enough, but I’m spending a lot of time trying to; I’m eating too much, the weight gain proves it, and I’m either crying or pissed most of the time!  But I’m trying really, really hard not to be like that.  Heck, I don’t even know why I’m crying, and I sure can’t tell you what I’m so mad about.  Here’s the kicker, something will happen that doesn’t bother me at all and then the exact same thing can happen again and suddenly I’m so pissed I can’t think straight, or I’m crying so hard I can’t see.  What changed there?  So…is that all on me?  or is it out of my control?   More importantly, is this something that is just happening because of outside circumstances and will blow over, or does my medication need to be adjusted?  Honestly, I have no clue.  (I think it’s probably the later, or maybe a little bit of both?

Even with all I know about mental illness, (from my experiences with bipolar disorder, anxiety, and depression) I still feel like it’s my fault.  I never feel like that about another person’s battles with mental illness, why do I hold myself to a different standard?  Is it simply because I’m often told, “I wish you didn’t let things get to you so much”, or is it because I think this is a part of me that I should be able to control.  I don’t have a lot in my life that I feel I have control over, surely I can control how I react to things.  Isn’t that what I’ve been practicing mindfulness for?  Simply accepting the way things are and not wishing it to be different.  Well honey, I do wish it were different right now, but I am trying hard to accept that it just is the way it is, and I know for certain that things will change.  Nothing stays the same, everything changes, I can always take solace in this, unless I’m deep in depression, then I think, “Yes, things change, it could get so much worse!”  Aaahhhh….No!  I can’t get caught in the future trap!  You know that trap, the one in your mind that predicts a future…good or bad, watch out! it’s a trap!  Chances are that the future you prophesied will not turn out the way your mind told you it would; staying in the present is the only way to really deal with life’s challenges, it’s it?  I KNOW these things.  Why then, is it so very hard?

I will try to take it moment by moment and be kind to myself.

I’ll try not to stay away.

I don’t want you to worry.

 

one moment at a time, I’ll get through this

 

*photo taken at Tumacacori National Park by W. Holcombe.  Please do not use without permission.  All rights reserved.

I want to be a better friend to those who are in pain.

 

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*Content warning: This post discusses suicide and depression.

A friend of mine shared this on Facebook and I had to share it with you.

Why “I love you” and “Please reach out” are the crappiest things to post after someone has died by suicide – by Deanna Zandt

I have been one of those people with good intentions who have simply said the wrong things, and for that, I’m deeply sorry.  I have been there, yet I still don’t know what to say when a friend is in their darkest moments.  I need to always remember, I didn’t want to die because I didn’t feel loved, I simply wanted the pain to stop.  It helped me to have someone sit with me, hold my hand, and simply be a witness to my pain.  It helped me to know that they would help if they could, but that they didn’t try to force this false help on me.  I know these things, but it’s very hard to do these things for someone from afar.  I can’t simply sit with someone when they are in pain if I can’t be physically with them.  Often, when I reach out to someone through texts, or messages, I don’t know what to say after that initial contact. Silence is unacceptable when you are texting.  I want them to know that I care, and I simply want to be there for them.  I know I can’t fix it, but that doesn’t mean I don’t want to.

I also read another article I found interesting: Depression and Suicide: Being mindful and accepting of the pain of the dark days – by Jack C. Surguy M.A. 

Jack Surguy mentions something that I found helpful for me; by accepting that everything changes I can take solace in knowing that these feelings will not last forever.  (even if they feel like they will)  When I’m am suffering I know that it will end, that is actually my mantra when my emotions are all out of wack, “this will end”.  I guess it’s a variation on “this too shall pass”, but that sounds trite to me for some reason.  I promise no matter what you are going through right now, good, bad or indifferent, it will change.

I hope you find both of these articles interesting and possibly helpful.

Right now my wrist is killing me, so I need to stop typing, but after the deaths of Anthony Bourdain and Kate Spade, I felt I needed to talk about this, I want to do better.  I want my friends (you) to know I love them, that I care, and that I respect their pain.  I want them to know this every day, not just times like these.

 

* photo by W. Holcombe.  A red yucca plant viewed while lying down looking at the sky.  I found it stunning.

 

Sitting is a Luxury

This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”).  I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics.  If you’re interested: Akathisia by the RxISK Medical Team.

The turmoil I have experienced with akathisia has been unbelievable.  The need to move has been overwhelming.  I can’t express how intense this sensation has been, it was consuming every part of my life.  You can read more about my experience with this side effect in my post “I can’t be still”.

I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia.  I’m happy to say that I’m much, much better.  I feel that sitting still is such a luxury.

Finally after a more than a month the restlessness is easing.  I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move.   My back is still very tense.  The muscles have been tense for over a month, they simply do not want to settle.  I’m in a quite a bit of pain because of it.  I think I may need physical therapy to help calm it down.  I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.

How about side effects with the new medication?  After all, can an drug actually cause no side effects?  I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function.  That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking.  I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly.  Hopefully this is a side effect that gets better.  If not, we may be on the search for a new antidepressant.  sigh.

I promised this would be short, I’m keeping my promise.

I’m leaving you with a few articles about Akathisia that I found useful during all of this.  I learned so much.  I’m surprised I haven’t heard of this before.

 

Psychogenic Non-Epileptic Seizures – What are they?

eye with monster

I want to tell you a little about something that is going on with me.  This is very difficult to talk about.  Admitting this is happening to me is difficult.  Talking about it is difficult.  It shouldn’t be this difficult, but it is.

You may remember back in February I was hospitalized for having seizures and it was then determined that I do not have epilepsy.  It was thought that a medication I was on may have caused the seizures but that isn’t the case, I’ve had more seizures since being off the medication.  (some people prefer to call these seizures events or episodes instead of seizures since the brain is not firing like it does during a true seizure.)   I do not have them regularly, and I haven’t had many, but I do still have them.

“A seizure is a temporary loss of control, often with abnormal movements, unconsciousness, or both. Epileptic seizures are caused by sudden abnormal electrical discharges in the brain. Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges. They are stress-related or “emotional.” They are sometimes called pseudoseizures, but “psychogenic non-epileptic seizures” (PNES) is now the preferred term.” -1

The type of seizures I get are psychogenic non-epileptic seizures (PNES).  By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.-1  “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.”(Kelley)-1

Since many people with epilepsy have normal reading with an EEG, PNES is diagnosed by an EEG with video monitoring which has to be read by a specialist in epilepsy.  Diagnosis this way is nearly 100% accurate.  There are about 10% of patients with epilepsy who also have PNES.

“PNES, unlike epileptic seizures, are not the result of a physical brain disease. Rather, they are emotional, stress-induced, and result from traumatic psychological experiences, sometimes from the forgotten past. It is well known that emotional or psychological stresses can produce physical reactions in people with no physical illness. For example, everyone has blushed in embarrassment or been nervous and anxious as part of a “stage fright” reaction. Today, we also know that more extreme emotional stresses can actually cause physical illnesses.”-1

As my psychiatrist said, my brain just gets to the point where it decides it can’t handle any more and says screw it.  I’m seeing a psychiatrist for medication to help with anxiety and my normal bipolar stuff, and whatever else comes up.  I’m seeing a psychologist for therapy to try to figure out what is causing this.  I’m not going to discuss what is causing my seizures because frankly we aren’t exactly sure yet.

Today I wanted to make people aware that psychogenic non-epileptic seizures are real.  People cannot control them.  People often refuse to accept the diagnosis because of the stigma related to it.  Family and often physicians do not understand that the patient cannot control what is happening to them.  I wanted you to know that you know someone who is going through this, and I have no control over it.  I also wanted people to know they are not as rare as you may think,  “in the general population the prevalence rate is 2-33 per 100, 000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia”.-2

for more information please read

  1. Psychogenic (Non-Epileptic) Seizures by University of South Florida College of Medicine
  2. The Truth about Psychogenic Non-Epileptic Seizures 

Mindfulness Monday 13

from d100 008

If your relationship to the present moment is not right
nothing can ever be right in the future
because when the future comes
it’s the present moment.

~Eckhart Tolle

 

The primary cause of unhappiness
is never the situation
but your thoughts about it.

~Eckhart Tolle

 

 

Have you tried? Do you think ___ caused it?

butterfly color

Butterfly, by w. holcombe

Hello.  My name is Wendy.  I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease.  Unless something amazing happens, they are not going to go away.  Sometimes I feel I need to make this statement before anyone speaks to me.

Recently I was asked a few things about my health.  This was not by people who see me often, or have much knowledge about my illnesses.  This is how I handled a few of the questions, some of it was good, some not so good.

Have you tried yoga?  It can really help your balance.  I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class.  It can only help your balance if you have some to start with!  After having a disease ruin your balance system, yoga isn’t possible.  (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know.  However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga.  And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)  

I heard about these positions you can get in that will make vertigo go away.  Why can’t you just do that?  There are maneuvers you can do to help certain types of vertigo.  However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer  this much if it was so simple to “cure” my vertigo?)

Do you think this could have been caused by all the drugs back when you were younger?  Okay, this one caught me off guard.  I thought, what the heck is she talking about?  I may have experimented a little when I was younger, but she wouldn’t have known that.  I must have looked shocked and said, “nooooo?”  She then explained, “All those psychiatric drugs they put you on.”  I was shocked.  How could someone think that the treatment I received for my mental illness caused me to get chronically ill?  I’m sure I looked shocked when I answered, “No.”  “Well I was thinking….”  I stopped and said, “I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease.  They have no idea what causes this.”  “That’s good to hear, I’ve been so worried about it.”  “Well there is no need to worry about that.  The medication I’ve taken for my Bipolar did not cause me to get ill.”   AHHH!

This last question has continued to plague me.  Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?

I have Bipolar I disorder.  I take medication for it.  I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself  when you have a mental illness than just taking your medication.

I have never been afraid of taking my medication.  Each time my medication is changed my doctor and I talk about it.  We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it.  I don’t just take a medication not knowing what it will do to me.  No one should do that.  If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with.  I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something.  It happens, doctors are human too.

I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid.  It did.  I now have to be on medication for hypothyroidism.  Am I upset that the medication caused this side effect.  No.  I went into this with my eyes wide open.  At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause.  I’m still happy I decided to take that medication and have those years as a stable person.  Truthfully, I would take it again today if that was the only medication that would keep me stable.

I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on.  Become informed.  Know what the medications will do.  Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.

Many of you may be thinking that there are times that a certain side effect is unknown.  You are right.  There are many stories of someone who took a medication and had a severe reaction.  There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could.   These stories are not typical.  We simply can’t live in fear and not be treated because of the “what ifs”.

I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way.  I can almost tell you for certainty that I would not be alive to write this post.  I will never regret taking the medications that helped save my life.