Tag: Depression

Finally I understand….they really aren’t bad people.

On By WendyIn Chronic Illness, Cochlear Implant, Disability, Meniere's Disease6 Comments

I wrote this a few days ago, but did hit enter.  I wanted to read over it and make adjustments….but I had a vertigo attack..and another, and another.  I’ve been having many vertigo attacks since November 1st.  They come on fast and the spinning is very fast.  They last anywhere from 30 minutes to 3 hours.  Yesterday I had 6 of them.  I can’t be on the computer very often the rare occasions when I can.  I can’t read much.  I don’t know if this is Meniere’s or Migraine Associated Vertigo, or a combination.  My guess is a combination.  We have calls in to both my doctor at Duke and the doctor here….yes the doctor here….I’m desperate…and read below you will understand why I’m giving him another chance.

So I don’t know when I’ll be back.  and I didn’t read this over.  thank you all for supporting and hanging in there with me.  You are the best!

So the people at Charlotte Eye Ear Nose and Throat are not so very horrible.  Stuart talked to the head of the Audiology department today.  She said that the doctor I saw has spoken to her twice about making an exception to see me.  Shockers!  Also there seems to be a pretty good reason for them to not see people from different clinics.  They don’t get paid for it.  Yep, it’s in their contract that they don’t get paid for MAPping cochlear implants that they didn’t implant.  Sad.  (for those of you scratching your head right now thinking, what on earth is MAPping? It mainly means when the audiologist adjust the CI’s so you can hear better…but here’s a link to nice explanation with more detail, if you are interested.  It is in easy to understand terms to don’t worry. Mapping a Cochlear Implant).

The audiologist then told Stuart that they made an exception in 2 cases, if it was a hardship for someone to go back to the place they had their CI surgery done, or if they couldn’t travel that far because of a physical problem.  She said, in my case it is both.  Because of the Meniere’s it is a hardship because I can’t drive and I have to depend on getting someone else to drive me.  I am also physically unable to ride that far because of the herniated disc, and because of the vertigo.  So, they are going to see me at this office!

I really wish they had told me this before.  I do understand they they don’t want everyone to know there are exceptions because then people would be trying to bend the rules.  However, if they had just told me they didn’t get paid, I would have understood.  That would have made me very understanding.  I feel horrible that they don’t get paid.  I do not feel right taking advantage of them.  If I only have to see them once a year or so, we will just pay them for the visit.  If I have to go numerous times, I will try to go back to Duke.  Right now, I really need to have this done, and I can’t afford to pay for the visit.  I am so very thankful that they are willing to help me.

My suggestion to them in the future…explain to the patient that they don’t get paid.  I sure wouldn’t have thought they had awful business practices if they had told me that.

On a not so good note.  Well, first a good thing…I woke up on Halloween…No vertigo.  Yay!   By late that night I had a little.  It decided to come back faster than before.  I fell like its toying with me.  Oh my goodness it has not been fun, if I move my head I get sick to my stomach.  I have a headache all the time because I have to concentrate so hard to focus.  Then night before last….major attack!  Dang!  I didn’t handle this well.  Mindfulness…yeah I’m not doing well.  My brain is not staying in this moment.  I keep thinking, what if it doesn’t stop.  After all this slow stuff has been going on for a while now.  I can’t stop my brain from saying building up these stories.  It’s harsh.  And it is making it worse.  Last night I had a little bit more than a mini attack but not a major attack.  I handled it better, and got it to slow down.  I’m just so sad about it.

I’m working on a lot of self care.  Eating well, pampering myself a bit, reading things that make me happy, watching good things on TV, reaching out to people I know give me good advice or just make me feel good, getting good sleep, and enough rest.  Making sure I take my medication on schedule.  Keeping a routine as much as possible.  This is very important.  If I don’t do these things I know I could slip into a deep depression.  I know this because I’m biploar.  But this is important for anyone.  Especially those of us with chronic illnesses.  We can get sick easily when we are under stress, we have to take care of ourselves, and when life hands us some extra challenges we have to be diligent about taking care of ourselves.

I also have to rest more…that may mean taking a nap, or just resting more.  I need to meditate more….now during these times I won’t be able to quiet my mind.  I know that.  and that is ok.  I will just sit quietly, and breathe.  As a thought comes up I will acknowledge it and tell it to move along…I will probably be doing that the whole time…and that is ok.  It will still do me some good, and I’m sure I will feel better.  I need to not give in to my impulse to eat more, especially junk.  Yes, when I get upset, I want junk.  I can’t do that to myself.  Just as I can’t drink or do drugs.  I have to stay as healthy as I can to keep my depression at bay.

So I’m off to do some reading that makes me laugh.

Just wanted to share this great news!

Hubby decided we needed to celebrate.    Dinner tonight…Steak with roasted green beans and new potatoes.  And for desert….a parfait made with bananas, berries, Greek yogurt, walnuts and a touch of maple syrup.  Double yum!   (Ok, so I have that desert often.  It’s really good and good for me!  I feel good knowing I’m taking care of me.)

You can’t help me hear better why??

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease35 Comments
wendy charcoal CI
Me. Image by Me.

I broke down and sobbed at the ear doctor’s office yesterday.  I actually left there sobbing…in the elevator, out the door, in the parking lot…had to stop in the parking lot and catch my breath because of the sobs…then into the car…….

I could not believe what I had just heard!

Not from the doctor, that hurt but I wasn’t surprised.  He mainly said, I had to live with it.  I didn’t realize I was hoping for more until he said it.  but I was crushed.  I was about to cry then.  But I held it together, I knew I would cry later, but just a little…a little mourning once again.  Knowing that I may live with this constant vertigo forever.  The fact that my worst feat was coming true….well just a little.  It isn’t fast vertigo, that is my worst fear.  I will not build up that fear.  After all I may not live with this forever.  I do not know the future!   but the wound was open, and it was raw….I was acknowledging these feelings…it hurt.

Then we went to set up an appointment with the Cochlear Implant audiologist.  Thank goodness, I really need my CI’s adjusted.  When ever I have a Meniere’s attack my hearing goes wonky.  They refused to see me!!!!!  What The *%&^??

First the doctor had said that they didn’t see people who went from Charlotte to Duke to have their Cochlear Implant surgery because they do the surgery there.  OK? well that makes sense I guess….still that is not right.  So you choose to have your surgery somewhere else, then we will not help you after your surgery.  They want to people to have their surgery there that badly?

But he said, since I lived there and moved here, maybe it would be OK.  So they went to set it up….NOPE.

Then they came back saying it is their policy not to take transfers from anywhere in NC.  What?  Charlotte is on the far side of NC.  NC is a VERY long state.  If someone moved here from the far side of NC they couldn’t get their CI’s adjusted here?  That is like 10 hours away.  What?  That is just messed up.  What if my surgery had been done poorly and I needed help?  Oh I’m sure they would help me then, that would be surgery.  This is just seeing the cochlear implant audiologist. I still don’t understand.  They get paid for this.  It’s not like it is free.  The appointment last for 1 1/2 to 2 hours.  It’s expensive.  Frankly it feels like discrimination.   You are one of those people from Duke, we don’t like your kind here.  I am just floored.

So, they say I will have to ride 3 hours to Duke to get my CI’s adjusted.  Yes, that is just torture for someone with vertigo!!  Then to have the CI adjustment is very hard on me.  It always makes me sick and I get a migraine.  Then I will have to endure the ride home…another 3 hours.  (of course if I have vertigo really bad it will take us much longer, we may even have to stay the night somewhere.)  Ugh!

I am at a loss.

There is no other CI clinic in this city.

Right now we are making an appointment at Duke.  I can’t see me actually going to this place after this anyway.  How could I trust my care to them?

I’m complaining to the manufacturer who makes my CI’s because I was told by them I could get my adjustments done there.  I’m sure they have no idea that this place is refusing patients who have Advanced Bionics Cochlear Implants.  (or any other implant from another clinic)

I am really beside myself and this is starting me to spiral out of control.
I am going down…down…down…

I am working hard not to let it.

I am tired of feeling that everything is out of my control.
I can’t even make calls about this.

I want to call that audiology department and find out why this is a policy and see if they understand my situation.  I feel this is malpractice, but according to the Audiology society where I could file a complaint it isn’t.  It is their business practice rules and that isn’t considered something I can lodge a complaint against.  It is discrimination!  I am being discriminated against because of where I had my surgery.

I just can’t believe this.
Normally I would never think of going there after this.

I would want to make them pay, but I wouldn’t let them touch me.

but I don’t want to go so far away every time I need to be seen.

*sigh*

I don’t have a choice.
I can’t do anything, and let’s face it, Stuart is not good at these things….and this stupid office had no way for a deaf person to get in touch with them!!!!

I can’t email them!

I’m not good on a computerized caption phone.  There is always such a delay, and there is always words that are translated so wrong.  I gave up.

I want to scream. guess I could since our neighbor moved this past weekend.  LOL

OK….

I’ve vented enough.

That’s my predicament
on which I will lament.

Wanting to take care of me
but have to depend on he.

How do I reconcile myself to this half-life?
or do I continue to wrestle with this internal strife?

Many of life’s offerings I willingly accept,
but loss of all control, I’m not so adept.

This is today, I can’t predict tomorrow.
let me, wipe away these tears, let go of the sorrow.

I need to admit it, I’m having a hard time.

On By WendyIn Chronic Illness12 Comments

Ahhhh!!!  I wrote more on this post, I revised it, I saved it, I really did.  I wrote more on it last night, and saved it.  I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error.   Really?  So I thought, I’ll save it and then try again.  It asked, “are you sure you want to do this?”  I knew it was too late then….all my work today was gone.   Oh but wait, a lot I added last night was gone too!  All my revisions.  What the???

I can’t do it again.   So all the revisions, all the changes, you aren’t going to get.  Because now I have a migraine.  I really want to post this today.   The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well!  This is what you get today.  I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that.   WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

Wendy charcoal

I haven’t written much about how I’m really doing.  About how some things have been getting to me a bit.  I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better!  I was able to do things around the house, to take walks, to well….do things!   I could hear.  I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself.  Not once!  That was amazing!!  That has drastically changed.

Right now I can’t walk very far at all.  I can’t walk at all without pain.

I still haven’t been able to start physical therapy.  It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time.  That delayed things almost a week, then we called to set up an appointment, it was a week out!  So that is 2 weeks I wasted.  So my first appointment was supposed to be today.  I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover.  There was no way I could go to physical therapy.  I could barely stand up.  So again a delay….until Friday.  *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more.  My hip still hurts a lot.  But the hip doctor said nothing is wrong with my hip.  He was actually not someone I would want to see again.  He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.”  and then proceeded to tell me it was therefore all coming from my back and good bye.  Even though I didn’t hurt my back until after my hip pain started!  The back doctor said, yes I have a herniated disc, but I also have hip problems too.  The back specialist was wonderful!  He believes in conservative treatment first, and explained things well, was very knowledgeable.  I would recommend him to anyone!  This hip doctor, was knife happy.  If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem.  No matter how many questions I had.  I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day.  He said, he loved giving good news.   Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing.  I will live in each day.  I WILL!  I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens.   This I will do.  It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again.  I was having multiple vertigo attacks a day.  Just little ones, I handled them pretty good.  It was exhausting.  It was driving me crazy.  I was trying so hard.   Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless.  It is hard to deal with.  It can drive you insane to hear this very loud noise every evening for hours.  My hearing sounds like I’m listening through a deep barrel.  This reverberating noise.  It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago.  My balance has gotten much worse too.   These things have been exceptionally hard to deal with.  I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings.   I have been having slow vertigo almost constantly.  If I focus on one thing it moves.  Nothing is ever still.  I always feel like I am slightly moving.  This scares the mess out of me.

So where am I now?

I’m scared.  I’m lonely.   I’m sad.  I’m mad.    And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression.  I have to pay close attention to my bipolar signals.  I have to up my coping mechanisms.  Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me.  Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill.  Being alone was felt better for me.  I was almost afraid to be around other people.  Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time.  I just can’t stand to be around people because I can’t hear them.  I get confused.  Noise drives me crazy.  I can’t go for walks.  I can’t get out in the neighborhood and meet people.  I’m very disappointed right now.

I wanted to do things here.  I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon.  Will he be able to do anything?  Maybe not.  But he will be able to give a new perspective on things.  This is a big clinic here and they are doing some studies on Meniere’s.  I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things.  So who knows?   I will also be getting my Cochlear Implants adjusted.  After I have a major attack I always have to have them adjusted.  They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear.  They get pressed on and it changes things.  So things have to be adjusted.  This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often.  This has become a pretty routine thing  with me.  So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things.  I’m sure we can get my hearing better.  If not, I will deal with it.

That’s what I do.  I accept things, and move on.  That’s life.  and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life.  really I do!  I have a lot to be grateful for…I’m just a little overwhelmed at the moment.   Having a little bit of difficulty with “not wanting things to be different”.   I want things to be different.  Right now I want that very much.  If it doesn’t change?   I will adapt.  I will change my expectations.  I will accept.  It will just take me a little bit.

things change….

On By WendyIn Chronic Illness, Mindfulness13 Comments
Everything Changes - photography by w. holcombe
Everything Changes –
photography by w. holcombe

Trying to hold on to the good days, thinking life will stay that way forever is fruitless.  It will change.  And it has.

My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.

I had my hip injection on September 11th.  We got Kiki that evening.  It was an exciting day.  I expected to be sore that night.  I expected to possibly be sore the next day, but would probably feel better….and continue to get better.  That didn’t happen.

I’m not sure if the shot did anything.  I don’t think so.  However. on the night of September the 12th, I got up and went to the bathroom.  I started to sit on the toilet and lost my footing and fell, hard, onto the seat.  My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it.  The big hurt was my hip.  OW!  The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN!   I have been in constant pain in this areas since that night.  The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8.   I had Stuart give me a  Toradol injection.  This really helped.  Toradol is a nonsteroidal anti-inflammatory drug.  (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.)  Since this worked to take most of the pain away I was sure I hadn’t broken anything.  I was also hoping the cortisone shot would kick in and help.  So I waited….

The cortisone didn’t help.  I went back to the doctor on the 18th.  She was disheartened.  She suspects that my pain may be coming from my spine, and maybe also from my hip.  She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor.  (she is actually a PA in the office, she wants me to see a specific doctor in the practice).  I will have the CT scan on Friday.  (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.)  I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.

How am I handling all of this?  Some days very well.  Some days not well at all.

I have had a hard time not getting really stressed out about this.  I’ve been creating “what if” stories in my head.  My mother started having back problems in her 50’s and it really changed her life.  She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back.  There are many reasons I believe this, I won’t get into them here.   What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing.  This is not a mindful thing to do.  It does NOT make things better.  It makes it worse.  The stress builds, and everything spirals out of control.   When I think like this I can feel the depression creeping up over me.  It is oppressive.

Then I try to be more mindful.  Being mindful is hard.  It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better.  I’m trying.  First, I am trying hard to stay present.  I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios.  I could have something easily fixable.  If I have something that is more difficult to deal with, I’ll deal with it.  Either way, I don’t have any idea, so stop speculating.  Keep my mind in the present, right here, right now.  That is the least stressful thing I can do.

I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her.  I can’t even feed her.  I can’t take her out.  I can’t care for her at all.  Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki.  We would not have adopted Kiki at this time.  Does he regret it?  No.  But would he have done it?  No.   So I have been having that emotion that simply doesn’t help…..guilt.  I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs.  I can’t focus time on training her.  I feel guilt.  Ugh!  useless!

Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do.  Haven’t figured all of that out exactly, but I will.  Yes, this is not how I planned for things to go, so I need to change my plans.   I have been playing with Kiki more indoors as much as possible.  She will bring me a toy and I will throw it.  She brings it back and drops it in my hand. (how cute it that?)  I have taught her to sit before I’ll throw it again.  (really, she was already doing that most of the time.)  I will hide it and have her find it. (I think this is a newer thing for her!)  So we are working on some training.  It’s just different from I planned.

Then I go back again to how I feel about my body, and what is happening.  My Meniere’s is acting up big time!  I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious.  The pain will not allow me to sleep or rest enough.  I can’t relax.  Also, it is Rag Weed season.  I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion.  My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room.  When the noise started I kept asking Stuart, “what is that noise?”  He looked at me funny.  I said, “You don’t hear it do you?”  I realized it was just me…dang.  Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point.  I’ve never had that happen before.  I’ve had very loud tinnitus, but I’ve never had that it that loud for that long.  It continued to be loud for the whole night but it did dial down a bit.

I hate to say it but, I’m just one big vertigo attack.  I try to control them but that is exhausting too.  Most of the time I’m spinning at least a little bit.  I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy!   I keep focusing on my breath…grateful I am still breathing.  Then I laugh…they say breathe, take a deep breath..ect.  It’s not like we are going to stop breathing.  It is something we do.  Do you ever really focus on your breath?  Really think about it?  If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect.   So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath.  How it works.  I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even.  and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine.  It is working pretty darn good.  It’s my body.  I like it.  I love me.  I’m at peace with it.  I accept it the way it is.

Now that is mindfulness.  That is what paying attention to your breath is supposed to be…..wow.  I feel better, right now.   I know this isn’t easy.  I’ll be working on being mindful forever.

 

 

 

 

 

Feeling Better….Part 3 – Mindfulness

On By WendyIn Chronic Illness, Mindfulness11 Comments

When I mentioned writing Part 3 in this series I said it would be on Mindfulness Based Stress Reduction.  I will touch on this subject, but I do not feel qualified to base my whole post on it.  I will tell you how I got involved in mindfulness and how it led to Mindfulness Based Stress Reduction.  (Note: I may refer to Mindfulness Based Stress Reduction as MBSR throughout this post.)

mindfulness quote

There have been a few times when I have read some of the Buddha’s teachings.  My husband has called himself a “non practicing Buddhist”.  After really studying more about Buddhism, I find this funny, but that isn’t a discussion for here.  I mention his interest in Buddhism because it is what caused me to start reading about it.  As I started reading and studying the Buddha’s teachings I found I was happy.  It made me happy.  Buddhism can be thought of as a religion or a philosophy.  Many do not consider Buddhism a religion because it is non-theistic.  You can follow the Buddhas teachings and continue to follow any other religion.  However, that is not part of this discussion, I just thought it was interesting.

An essential element of Buddhist practice is mindfulness.   Mindfulness, as defined by Psychology Today, “is a state of active, open attention on the present. When you’re mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.”

I’m sure you have noticed in many of my posts that I have mentioned that I am staying in the moment.  I no longer dwell on the past, I do not worry about the future, I live in the now.  This is just a part of being mindful.  It is also important to note the part about…”without judging them”.  Always be gentle with yourself.  I used to be very bad about that.  Even my doctor used to tell me, “Wendy, give yourself a break.”  This was when I was very sick, I felt guilty about it.  Now when I feel those thoughts come up, I will observe it, and sometimes I get wrapped up in it for a little while, then I notice it and take a deep breath and tell myself.  “Wendy, be gentle.”  and let it go.  I bring myself back to the moment.   I’m still in the infancy of mindfulness, I’m just learning, there’s much more to it than I know.

I have had many people get in touch with me who have Meniere’s disease, and I think every one at one point has said, “I just want my old life back.”  This is, of course, a natural feeling when we get hit with such a devastating illness.  However, this feeling often stays with us for a very long time.  I realized through mindfulness I could let this go, and it was the best thing I could do.  Looking back at my old life and wanting it back was not helping my life now.  Nor was it helping to longing look at the future and hope for things to get better, or to look at the future and just know things could only get worse.   I started using mindfulness to just look at today, and stop looking at my old life, (honestly, I didn’t look at the past for long, I’m one of those people who when they get hit with something says….”what now?”)  However, I was constantly looking forward.  Either with all my hopes on the next thing we tried, or when it failed believing that nothing was going to work and I was going to be bed bound and useless forever.  (no I didn’t feel sorry for myself, I thought I needed to be prepared. well sometimes I felt sorry for myself.)   With mindfulness I stopped doing that.  I started just looking at today.  Living in this day.  That doesn’t mean I don’t make plans, that means I just go with the flow if plans change.  I don’t freak out, I just go with it.   NOT worrying about my future has made my future open to be written as it comes.

One symptom that has changed in such a drastic way because of this practice has been my vertigo.  When I first started my mindfulness practice I was able to stay calmer during an attack.  Then I was able to get through an attack without freaking out at all, I could stay completely calm.  This turned to starting to focus on an object about 18 inches or so from me, I put my hand down on a solid object and breathe, telling myself aloud…”you feel the object is not moving, this is not real.  This is not real, this is solid beneath your hand, it is not moving….” continually focusing on the object.  Soon, I never saw the room spin unless I looked up from the object.   Now, if I feel an attack coming on I can normally take a deep breath and center myself, focus my eyes on something still, and pull myself out of it.  I usually stop the attacks now.   Sometimes it takes a bit.  I have to get cooled down and I need to be still for a few minutes just focusing, but I never start spinning. It will start to rotate a little but I will pull my eyes back to center, take a deep breath and just feel where I’m at.  Tell myself it’s OK.  I’m OK.  If it happens I’m OK.  It’s not real.  Stay centered.  Stay right here.  I’m really just doing what I did during the attacks, staying focused, telling myself it’s not real, but now I’m simply being gentle with myself and letting myself know I’ll be OK no matter what, and it calms down and goes away.  I started to panic the recently and I came very close to having a full-blown attack, we were in the small moving van getting things that were missed by the movers, riding to Charlotte on the freeway.  I was scared because of where we were.  When Stuart was able to stop, I calmed down and got everything under control and it went away.  I was shocked.  I was starting to spin.  It was going, then suddenly it wasn’t.

Mindfulness and my mental health.  My last visit to my psychiatrist was so happy.  She was so impressed.  We talked and I said something about what I told someone in answer to something and she said, “you really have been practicing mindfulness haven’t you?”  We continued to talk and she reduced my anxiety medication.   I’m not sure if I will be able to have more of my medications reduced, but I’m thrilled about this.  It has been almost 2 months and I’m a happy person.  I’ve had some periods of depression, but they were warranted, and were not prolonged.  I have not been seen my therapist in over 2 months….I have been released to see her only as I need.   So far, I haven’t felt the need.   Great news!

Practicing mindfulness is the best thing I’ve ever done for myself.

That was how it started.  Just little things.  It moved to more things.  Somewhere along this journey I started reading about Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. Mindfulness Based Cognitive Therapy I’m interested in but know very little about, Mindfulness Based Stress Reduction I’m very interested in, I’ve read a lot about, and want to share some with you so here’s a little introduction to it and how I found out about it….

Mindfulness For Beginners by Jon Kabat-Zinn cover photo
Mindfulness For Beginners by Jon Kabat-Zinn cover photo

Mindfulness-based stress reduction (MBSR) (as defined in Wikipedia) is a mindfulness-based program designed initially to assist people with pain and a range of conditions and life issues that were difficult to treat in a hospital setting developed by Jon Kabat-Zinn at the University of Massachusetts Medical Center, which uses a combination of mindfulness meditation, body awareness, and yoga to help people become more mindful. In recent years, meditation has been the subject of controlled clinical research that suggests it may have beneficial effects, including stress reduction, relaxation, and improvements to quality of life, but that it does not help prevent or cure disease. (There have been some studies that contradict these findings, but I found many more studies on the positive side than the negative.)  While MBSR has its roots in Buddhism , the program itself is secular.  (funny thing, I always thought secular meant religious, but it means not religious, so when I was saying non-secular, I was really meaning religious.  I learn something new every day!)

The MBSR program is an 8 week workshop taught by certified trainers.  I have not been to one of these workshops.  They are often expensive.  The one at Duke is very expensive.  When I first read about the classes it was from a brochure at Duke and I was instantly drawn to it and turned off at the same time.   It looked very interesting but the cost was outrageous.  I remember thinking it must be some new age thing geared toward the rich, since the workshop was so expensive and insurance didn’t cover it.

A year or so later, I started learning about mindfulness on my own.  I came across books by Jon Kabat-Zinn.  He talked about how this is something anyone could do and it didn’t have to cost anything.  I knew then MBSR wasn’t meant to be simply for the rich.  I’ve read his book Mindfulness for Beginners, it is very good.  I’ve also read parts of some of his other books.  (they are always on hold at the library and I haven’t been able to finish them before I had to take them back…..so I’ll get back to them…but there are more…Full Catastrophe Living, Wherever You Go There You Are, Coming to Our Senses.….)  I’ve read books by other authors, I’ve read a lot about Mindfulness Based Stress Reduction on the internet and there are a lot of YouTube videos on the subject, many with Jon Kabat-Zinn speaking.  You can even hear some of his books read through YouTube, I found that interesting.   I am reading the book called Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World, by Mark Williams and Danny Penman with the Foreward by Jon Kabat-Zinn.  This book is much like a journey through one of the workshops.  I’m only on week two, but it is very interesting.  It has deepened my mindfulness practice and awareness.   I had much more of just an informal practice before, I now have a formal and informal practice.  I take a certain amount of time to formally practice mindfulness, and I informally practice it throughout the day.  Before, I would kind of formally practice it occasionally, but now, I have a set time that I practice.  I also had a very hard time meditating before.  Now I’m much more gentle with myself.  I don’t feel I have to do it right.  Ya know, I don’t think anyone really, does it “right”.  It’s right for you. (or for them)  It is will change as you change.  So for now, I must have guided meditation.  Perhaps I always will.  Both of the books I mention above have guided meditations included with them.  There are also guided meditations on YouTube.  (luckily I can now understand recordings through my blue-tooth to my Cochlear Implants, meditation would be much harder for me if I couldn’t do guided meditation).

I realize this may sound like I’m crazy about Jon Kabat-Zinn, not really.  I wanted to learn more from the person who started the program first, but I have found wonderful information from books that were not by him.    Also you do not have to practice MBSR to practice Mindfulness.  It’s all mainly just mindfulness, I think the MBSR books are simply written more therapeutic and less spiritual.   Many of the spiritual books that I found that talk about mindfulness kind of got on my nerves a little. Yes, it’s comes out of Buddhism, but it’s not about religion.  It’s simply a good thing, and I’m sure if you looked in other places you’d find something like it, maybe not as detailed, or called the same thing.  Plus, Buddhism been around a very long time, so they got a jump on it I guess.  haha

This is my story so far with mindfulness.  There is a Mindfulness Based Stress Reduction program offered here through Carolinas Health Care (where hubby works now) that is much more affordable. (no he does not get a discount)  They will even work with people who cannot afford the class, they don’t want anyone to feel they cannot attend because of funds.  We are thinking about attending the workshop in the Spring.   If we do I will certainly blog about the experience.

This concludes my Feeling Better Series.  Hopefully, it will not end my feeling better.

I will now return to my regularly scheduled program…..

Me and my blog…..it just is.

On By WendyIn Chronic Illness, Health9 Comments
hearts gray scale
w. holcombe’s heART

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself.  I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it.  My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation.  I never asked “Why me?”  I said, “Why not me?”  This is very important to me.  This is a part of my very essence.   I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household.  Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down.  Much more than I realized.  Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it.  “How do I handle this?”  “What can I do?”  “What’s the best way….????”   Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

  • My husband lost his job…..what can I do?  I asked myself that often.  I felt guilty that I couldn’t work.  I tried to get disability and was denied.  (yes I’m appealing, but it’s taking a long time.) Totally, out of my control.  No easy fix.
  • Sandy died.  My best friend.  My constant companion.  I felt lost.  In many ways I still do. I felt guilty.  I felt I let her down.  I know that’s not the case.  The grief has taken a lot out of me.  Out of my control.  No easy fix.
  • I’ve had added health issues.  Out of my control.  No easy fix.
  • My health issues have gotten worse.  Out of my control.  No easy fix.
  • My father was diagnosed with cancer.  Out of my control.
  • ect…ect…ect…….

Yep, I was having a hard time being me.  I’d look in the mirror and think, where are you?  I know you are in there somewhere….come out!   I was ready to hide.  After everything, I felt broken.  And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything.  I’ve been honest.  However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better.  No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy.  The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong!  I’m thinking too much in the future.  I don’t know what the future may hold.  I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold.  These stories have not been great.  This is not a healthy way of thinking!   I cannot live in the future, no more than I can live in the past.  The only place I can live is in the present.  Yes, that sounds very Zen.  Yes, I’ve been reading a lot about this, but it makes sense.  If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today.  That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them.  It also means I’m not constantly looking back thinking, “I just want my old life back.”  that’s not going to happen, I’ve known that for a long time.  Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing.   Luckily, so are things around me.  Would my outlook be changing if things were continuing to be spiraling downward?  Yes, I think it would.  I think it has been, I just haven’t been writing about it here as much as I probably should have been.  It’s a work in progress, or to put it more correctly, I’m a work in progress.  I always will be.  So will this blog.

I want to share with my readers, my friends, this side of me.  It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it!  I can’t help it, it’s who I am.  If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me.  This stuff has to come out somewhere!  However, I want you to see how I am handling the rough patches,  how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all.   But there will be times when I don’t handle things well, and you will continue to hear about that too.  It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit.  Each week I plan to write a post called Attitude of Gratitude.  These posts will include things I’m grateful for that week.  These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows.   I want to make sure I never let a week go by that I don’t think about things for which I’m grateful.  I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge.  We can make it an official challenge if people are interested.   I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll!  It was an overwhelming landslide that I should continue to write as I do.   I promise I will continue to write as open and honest as always.  I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too.  Yes, there really are some!

I’m so very grateful to have such wonderful friends!  (many who I have never met in person)

The comments and emails I received after my last post amazed me!  Thank you all so very much!

Hey Doc, You are Fired!!

On By WendyIn Chronic Illness, Mental Health11 Comments

you're Fired

Small note…I started this post on Friday, April 18th.  I updated it today.  It’s a bit long, sorry.  I apologize if it is a little bit jumbled, my head is in that frame of mind right now.  Trying to get everything in, and just now knowing where to stop.  As normal, there may be grammar, typo’s and all kinds of mistakes, if it’s too much, just let me know.  But you may get a long letter back.  : )

After much toil and trouble trying to get help from my psychiatrist, it’s time to give up and move on!

Hey Doc, You’re Fired!

I wonder if firing a doctor makes them understand much, after all, they still have a job, but they don’t have me as a patient any more. If she continues to treat patients the way she has treated me, I don’t see how her new practice is going to survive!  Also, where I’m concerned, she will be told why she no longer has me as a patient, maybe it will bring some understanding.  I’m sure part of this is my issue, but some professionalism must be maintained between a doctor and patient.

From my last post you may remember that I saw my psychiatrist on Wednesday, April 9th.  (This was after a month of trying to get my medication straight and get an appointment to see her.  All of that after having side-effects from a medication that I should never have been put on.  She did not look at the medications I had been prescribed by other doctors.  If this had happened, and we had discussed this, I would not have been prescribed a medication that interacted with my other medications.)   On the 9th, we discussed my medication, and I discussed the fact that I felt the need to start an emergency plan in case I was going to hurt myself because I was having many thoughts and desires of doing just that.  I really felt this was not taken seriously, perhaps because my husband is with me most of the time, and cares for me?  I don’t know, I do know I left the office wondering why that was just brushed off.  One reason she may have thought I didn’t need more discussion on this is because I was taking precautions.  I had my husband lock away all of my medication and only dispense them as they are prescribed.  I had him looking for more clues, other than just me balled up on the floor falling into an abyss.  Yes, I was cycling, so on the good swings I was able to try to set an emergency plan in place.  But on the down swings….well, that’s a different matter all together.  However, I cannot stress enough, if you have any mental health issue and feel you may harm yourself, try very hard to make a plan that will help you.  If you want to know more about what I did…please contact me, just look at my About Page.  It may not be everything, but I found it a great help that I knew I was helping myself in some small way even when things were spiraling out of control.

During the latest visit we did make a plan for my medication, but she wanted to talk with my neurologist to make sure the medication she put me on wouldn’t interfere with any other medication she had me on.  Finally, I thought, a Great plan.  She said she should know by Friday, April 11th,  and would be in touch.   That didn’t happen.  My husband called on Friday, Monday, Tuesday, Wednesday, Thursday….and Friday (when he called on Friday the 18th he learned the office was closed for Good Friday).  Each day he only got a recording to leave a message, he never talked to a real person.  I emailed the main office on Wednesday to reiterate that my husband was trying to get in touch, and no one had called him back.  I also made sure they were aware that he is authorized to speak for me, as I cannot talk on the phone.  (This is listed in my files, he has full power of attorney for me.)

My husband also talked with my neurologist.  She said the medication would be fine.  (I’m not sure if the psychiatrist ever actually got in touch with her or not.)   Thursday, April 17th hubby and I talked and decided we would ask my neurologist or general doctor if they would write the prescription for the medication.  Preferably, my neurologist because it is a medication she often prescribes.  (I had already decided I was going to change psychiatrist  but I needed to start the new medication now, who knows when I’ll get an appointment with a new psychiatrist.)

The plan for Friday was to call the psychiatrist first, trying to reach out one more time.  Then call the other doctors mentioned, and to get in touch with my therapist, and hubby’s therapist to see if they might have recommended psychiatrist for me to change to.   However, when hubby called, (as I said earlier) the psychiatrist office was closed for Good Friday.  Yet, she still had not returned any of our calls!  (yes, I am so disappointed in this woman, you have no idea!)  He also called my general doctor, and her office was closed.  He called my neurologist, and she was in!!!  Yay!  She also called in my prescription!  (she was already calling in a prescription for me for steroids to see if we can break this cycle of the killer migraines).  I must say, most of my doctors are WONDERFUL!  I love them, and I know they care about me.

These are just a few of the reasons that I’m firing my psychiatrist, but there is something else that really bothers me about the whole thing.

When I first saw this doctor I had a very good first visit.  It felt right.  Then when I returned for my second visit she seemed to have forgotten everything we talked about.  No, I don’t expect my doctors to remember everything from every visit, but I do expect them to look at my file and be a bit up to date when they walk in the room.  She met me by telling me that she was leaving the practice I was seeing her at, when I was referred to her I was told she was not taking new patients, but since she worked so well with my therapist  she would accept me.  I was conflicted about this because my therapist is with that practice and I like for my doctor and therapist to have a good working relationship.  But I felt very good about the first visit so I decided to follow her to her new practice.  (and when I say new, I mean, they were just starting it, so it’s a big deal for the doctor’s involved.  I realize this has to be a lot for her to deal with, but it shouldn’t be at the neglect of her patients).

Now that I think back on this, it bothers me.  First, it was questioned if she was taking new patients, and she decided to take me on because she likes my therapist so much….ect.   I was thrilled at the time.  Now I think, she should never have taken me on as a new patient when she knew she was leaving that practice.  She had to know, my first and second appointments were only 2 weeks apart.

I know this post is getting a bit long, but I feel I would like to say some good things too.  When I first saw this psychiatrist, I felt validated for the first time in years.  She understood how I couldn’t just exercise…ect.  She seemed to really understand my chronic illness and was willing to work with me.  We discussed that at some points I may have to cancel my appointments on short notice, she understood and set me up special appointments on her planning days, so if I couldn’t come, she wasn’t losing any money.  This plan was still in effect at her new office.  I only had to cancel at her new office ONCE, so I don’t think this should have been an issue; but I don’t really know.  There are 2 other big things that bothered me when she moved.  I have severe asthma.  She put an aromatherapy thing in her office, I could not breathe in there.  I put on my mask and got way to hot and couldn’t stop coughing.  We had to move to the conference room.  I was very uncomfortable there.  We were even interrupted by her husband and that made me feel very odd.  I know it is too much to ask, but after her extreme understanding, or so it seemed, at our first meeting, I kind of expected the smelly thing to be gone from her office when I returned.  I guess she doesn’t have any other patients with scent issues.  One huge thing, as you all know, I have a big problem hearing. this doctor talks very fast.  I ask her often to slow down.  She will apologize and then continue to speak at the same speed.  This is the reason I have to have my husband in my sessions.  I would prefer not to have him in there.  It takes more time, and I feel I’m just spending time going back and forth trying to understand things.

Now, we wait for a bit to see if she will actually return my husband’s calls next week.  If she does, he will explain in detail why we will no longer be in need of her services.  If she doesn’t, I will be writing her a letter.  At this time I’m not sure what other actions I may take.  I do feel doctors should be more responsible for how they treat their patients.  They are in charge of a person’s health.  A mental health provider could the that cog in a person’s life that changes a life forever….or puts it in a delicate balance of life and death.  Am I being overly dramatic here?  I don’t think so.  If I believe my doctor cares and is trying their best to help me, I feel better.  If they ignore me when I have made it clear that I am in a very tenuous state, I feel less like a human.  This is a huge responsibility.

If she calls, we will simply discharge her.  I can understand that she may be way over her head in the new office, that she may have hired the wrong front staff people….ect.  I feel compassion for her about all of this.  There may be extreme circumstances in her own life.  In a business, especially one of this magnitude, extenuating circumstances should have been relayed to the patient and taken care of by another doctor on call.  But she doesn’t even call???  No one called.

So now you know my whole story.

On closing….my therapist got in touch and recommended a new psychiatrist.  We have been in touch, and will see where we are going from here.  I’ll keep you updated on that.

Always remember, we need to be an advocate for ourselves!

If a doctor doesn’t treat you with respect, or if you are just uncomfortable in their care, and you have any way possible, change doctors!  I know some people just can’t do this as easily as I can.  I grew up in a very rural area, I had two choices for a general doctor.  No choices for specialist.  The nearest doctors of choice were over an hour a way.  (this may have been a major reason I was not diagnosed with Bipolar I Disorder as early as I might have been.)

Yes, I may have a mental illness, and recently I may have been very depressed because of my medication has not been working properly, but I am a human being.  Oh a better note, I am feeling much better (I know I need to get my medication straight because with Bipolar I Disorder I might feel fine one day and not so much the next).   Doctors still need to take patients seriously.

Yet, I realize that a lot of people will think, “She has a mental illness, is admittedly not stable, she is probably exaggerating about things.”  Or something like that.  I’m lucky I have someone (my husband) who can also help be an advocate for me and explain this is not “all in my head”.   But what if I didn’t?  What if I didn’t have the ability to just change psychiatric doctors?

There needs to be much progress made to help people who need mental health care.  (or health care in general) If they can’t afford it, they are often put on a LONG waiting list to see someone that the state provides.  They have no choice in doctors.  They are often lost in the system.  When you are having mental health issues, trying to navigate the system to be seen at all is extremely hard.  (Yes, I am speaking from experience).   Things need to change.  How can we bring about a change?

I’ve thought and thought on this issue, and I just can’t see how to make things better in this country.  Are the mentally ill meant to live a life of less?

Mental Health care (and general health care) in this country is great….if you can afford it!

Thoughts?  Ideas?  I’d love to hear them.

A tiny little update

On By WendyIn Bipolar, Chronic Illness, Meniere's Disease9 Comments

After my last post I feel horrible I haven’t been back here sooner.

I’m not having a good time with the vertigo recently.  My dear friend, Mr. Meniere’s, has decided to settle in for a visit.  A long horrible visit…so this really will be very short.

Saw my psych doctor last Wednesday.  She is supposed to be talking to my Neurologist (headache pain specialist) about a drug we discussed putting me on.  (a good idea huh?)  But it’s taking a long time.  I did see her late on Wednesday so things probably didn’t get started until Thursday…but my goodness.  Well, I won’t get in to all of that.  I’m upset about that visit….but I’ll vent later.

I am having a better time of it.  Not cycling so much now, I’ve been pretty level for a couple of days now.  I’m reading more of the Buddha’s teachings, and it helps.  (I’m not pushing Buddhism here….I just get very comforted when I read his teachings and try to follow the practices.)

I really need to control my anxiety.  I know the vertigo is more out of control because of the stress.  It is my greatest trigger for Meniere’s.

I need to have emergency plans in place…just in case.  This helps relieve my anxiety about a situation I have no control over.  It gives me a little control.  For example, I have an emergency kit for when I have vertigo attacks.  I feel my severe vertigo attacks have fallen drastically since I created this kit.  I have one for home and one for travel.  It eases my mind.

When I started feeling suicidal, I knew it was my illness, but it didn’t really matter.  So when I cycled enough out of it to be able to really communicate with my husband, we made up an emergency plan.  I know where to call, or go if I feel I am going to hurt myself.  My husband put all of my medication away and gives it to me as prescribed so I will not….tempted when I fall in the darkness of my soul.  We have a plan.  It has helped me so much.  I now feel that I am understood.  My husband knows how I’m feeling, as much as he can.  He’s taking me seriously, and helped me to have in place a way to make it easier when (or if?) the dark lady returns.

Today, we talked about an emergency plan if my husband remains out of work.  We can’t wait until there is no money left, it will cost us money to leave here.  We need to know at what point do we need to decide to leave.  Where we are going, and how things will happen.  There are parts in there we are pretty sure about, but we need to solidify this plan.  I’m so anxious about our future I feel paralyzed.  I know that it is adding to my feeling so very ill.

So….I’m here.

I’m not on the computer a lot right now because of the vertigo.

I’m working on getting the psych meds straight.

We are working on an emergency plan if hubby doesn’t find a job before we completely run out of money.  (luckily we were able to get on a mortgage assistance plan, or we would be destitute before now.  But right now we don’t have to pay our mortgage because of this assistance.)   This will help me feel less anxious about our future.

I have much more to say….things I’ve been discovering about myself…and just thoughts in general.

Thank you all for the loving support you have shown me.  I have felt these emotions all around me, and it has helped so much.  We may not all know each other in person, but I promise, the loving thoughts sent from all of you have reached me.  And I am eternally grateful.

The Bipolar Cocktail – when the mixture isn’t right…

On By WendyIn Bipolar35 Comments

Medication_cocktail_by_LaChixMany illnesses are treated with a cocktail of medications, Bipolar type 1 is not different.  For me, I must have a mood stabilizer, an antidepressant, an anxiolytic (anti-anxiety drug), and….I can’t remember if there is anything else.  I think that’s it.  Right now the mood stabilizer is working.  The antidepressant isn’t working, and the anxiolytic is trying hard to work but I have a lot of reason to be anxious.  (that’s what my therapist told me on Thursday anyway).   Of course, you could say I have a lot to be depressed about too, but I don’t normally let depression take over my life.  I’m fighting hard to keep telling myself, “This will get better.”, but it has been a bit overwhelming lately.

The tears, so many tears have fallen.  The words, “I’m sorry.” have passed my lips so many times I’ve begun to wonder if I can finish a conversation without saying it.  I’ve been told by professionals that I don’t “wallow”.  Oh if they could see me some nights, they might just change their minds.

Recently I completely lost control.  In a complete panic! I needed to leave.  I needed to get away from my husband before I hurt him any longer.  I know I’ve become such a burden, I’m not a fun person, I’m worthless, and useless.  I wish this wonderful, caring man had never met me.

How could I leave?  I can’t drive.  Where would I go?  I have no money.  What could I do?  The only answer.   Take the dark lady’s hand, I hear her promises to make it all better.  To help my husband.  To end the pain for both of us.  I reach out….and suddenly I stop!  NO!  This is my illness talking!  It will get better.  My husband loves me, and if I leave with her, he would be devastated.  I can’t hurt him.  “NO! my  lady I will not leave with you.  I’m stronger than you!” … at least for now.

I knew my resolve was weak.  I knew I couldn’t trust myself.  I grabbed my computer.  I searched and searched….I needed an inpatient hospital.  Somewhere I could go for just a little while.  Somewhere I could be made to not listen to the dark lady beckoning to me with empty promises.  I found a listing, I hit on it…..Site Not Found….What???  I went to the next place on the list…it wasn’t an inpatient facility…the next, same thing….again…again!  I threw my computer!

I was so livid!  And so…..I don’t know….I really don’t remember what happened immediately after that.   I know I ended up getting in the bath, (for those who regularly read my blog you will know how odd this is for me, I’ve become quite phobic of the bath due to my vertigo, but in the bath I was.) and my husband joined me.  He held me, and we just laid back in the water.  I talked, he could only listen.  (I can’t wear my cochlear implants in the tub, so even if he talked I wouldn’t have known.)  I cried, he held on tighter.  I told him everything.  He knew most of it already.  He did witness it.   When we got out of the bath, and readied for bed, I gathered all my medications and gave them to him.  I took out 3 pills that I might need during the night, knowing that even if I took the 3 together I would not cause myself harm.  I told him to lock them away, until I was better.  Only giving me the medications as I needed them.   (this happened a few days ago)

My cocktail will be remixed on Wednesday.  It will take a while to know if this mixture is working.  Until then, I will be cautious.  I’m still crying a lot.  The words “I’m sorry” are continuously spewing from my mouth.  I not only feel sad, angry, lost and riddled with panic….I feel sick.  My body feels as if it is fighting off an invader.  I keep running a low-grade fever, on and off.  I am hot….I am cold.  My head, throat, all of me hurts.   I had one of the worst asthma attacks I’ve had….ever…yesterday.  It scared me….suffocation is terrifying.   Once I knew my rescue inhaler was not going to work, we rushed to get the nebulizer up and running.  Luckily, I began to feel relief very quickly.  A trip to the ER was narrowly avoided.

Yes, I have an emergency plan in place now for my deepest levels of depression.  Of course, I have my husband watching my behavior.  I have all my medications that could harm me locked away to be given out only at specified times.  We have the address and phone number of an emergency psychiatric hospital.   At times I am thinking clearly.  Other times I feel so engulfed by the depths of depression I cannot imagine a way out, it feels as if I’ve stepped in a tar pit and it is constantly trying to pull me under.  I have to keep my mantra in my head….”I know it will get better.”   I’ve had problems with my medications before, I KNOW THIS WILL GET BETTER!

Being Bipolar….will I ever really be stable?

On By WendyIn Chronic Illness, Mental Health20 Comments
Bipolar
Bipolar by SimoneBryne at deviantArt.com

Note….At this time one of my medications has stopped working, my psychiatrist has replaced it with another medication, but at this point, I am not stable.  I have recently read through the past year of my blog and my personal journals and feel I haven’t been completely stable for a long time, but I have been manageable….most of the time.  When I reference Bipolar Illness below I am referring to Bipolar I.  There are different types of Bipolar, when you think of classic Manic Depression, you normally think of Bipolar I.

This post is going to come from the heart, and will reveal things I haven’t freely talked about outside of my therapist’s office.

From all the tests, and talking, and everything else psych doctors do, my psychiatrist feels I have had Bipolar tendencies most of my life.  My first suicide attempt was at 11 years of age, but it wasn’t the first time I thought of it.  It just isn’t right for an 11-year-old to think that dying would be for the best.  I remember my sister and I had been arguing….I think…I don’t remember what it was about, or if it really even happened.  I guess that wasn’t important.  I know I silently went into my parent’s bedroom, they weren’t at home, I opened the top drawer of my father’s chest of drawers and took out his pistol.  I knew nothing about guns.  It was in a little holster thing.  I don’t think I even took it out….after all, wouldn’t a bullet go through that leather?  I put it to my head and pulled the trigger.

Nothing happened.  I tried again……Nothing.   By this time I was shaking and thought my sister might find me, I replaced the gun right where I found it, after all it didn’t do me any good.  I don’t know if the gun was empty, if the safety was on…or what.  All I know is that it didn’t do what I thought it would.  What I wanted it to.

How can an 11-year-old child be so depressed that she puts a gun to her head, and pulls the trigger?  Was I scared, yes.  But not because of the reasons you may think.  I was afraid of being caught, afraid of doing it wrong, and very afraid of who would find me and have to deal with the mess.

I didn’t tell anyone.  Not for years and years, actually, not until recently.  Since then I’ve had 3 more suicide attempts and serious thoughts and plans for others.  When I’m depressed I simply cannot believe it will ever get better.  The lady in the dark is whispering her promises that it will be better with her, and she is all I can hear.

When I’m more level, or a bit manic, I cannot believe I would ever think that way.  I even have a hard time when  others are feeling suicidal.  How could that be?  I have had a number of friends reach out to me when they have felt the cold comforting hand of death reaching for them and they are so very tempted to reach out and take hold.  I often just can’t understand how they could feel that way.  They have friends, they are loved…look, they have me.  But didn’t I have friends?  Don’t I have friends?  Was I not loved?  Then why…why can I feel it would be so much better if I simply didn’t exist?  Please don’t get me wrong, I can empathize with my friends who are going through their own darkness, I talk to them and understand their feelings…or at least most of them.  But feeling suicidal is very personal, each person has their own demons.   I know I can’t understand all my friend is feeling because their demons are their demons and I can’t hear or see them.  I can only see the light on the outside, and try to help them see a little glimmer of that light, just enough to give them a bit of hope.  However, I would never judge a person who cannot find that hope….that flicker of light that they need to help them out of the darkness.

Many people think ill of those who commit suicide, and even those who have fought the battle and continue to fight.  I’ve heard how it’s the most selfish thing someone can do.  How they are doomed to everlasting hell.   I don’t think like that.  I know many people who contemplate suicide do so because they think they are such a horrible burden on the people they love.  They are trying so hard not to be selfish.  They do not want to cause those they love any more pain.  Yes, the pain from the suicide is something a loved one cannot get over, but to the person who is deeply depressed and sees this as the only way to save their loved ones…it is the most selfless act they feel they can perform.    Do I think someone who commits suicide is doomed for everlasting hell….no, personally I think they have already been living in it or they never would have committed suicide in the first place.

Suicide is not performed by people who are mentally well.  I will never judge a person until I have lived their lives while looking through their soul.  A mentally ill person does not see things the way a healthy person does.  My views on suicide are just my own.  Please do not judge me.  And please, at this time, do not argue with me….I’m not even sure I could handle a grown-up discussion of different views.  You see, I’m having trouble with my medication, and I’m not stable.  I need to release some of these feelings, but I’m not stable enough to debate them.  I promise, when things are better, I will open this discussion up again, if anyone wants me to, and we can discuss it then.

Oh, the Bipolar…..That is what I started to talk about isn’t it.  It isn’t all about the depression that takes me to the depths of my own hell.  There is that other side, the euphoria of mania.  It can be so seductive.  Many people who are Bipolar I, will often stop taking their medication because they feel numb.  No, they don’t miss the depression, but the mania….it’s like a drug.  Some of the best artist (of all kinds) have been Bipolar, or more as it was more commonly known, Manic Depressive.  When one decides to go off their medication, I don’t think they think about the depression that seeps the life out of them, they are thinking of the high they get from the mania.  Speaking from experience, it is so very hard to feel that high of creation when you are taking your medication.  I used to have sparks of inspiration and spend days in my studio, never leaving, barely sleeping….painting, and painting, and painting….I have never felt that surge of creativity since I started my medication nearly 20 years ago.  Do I miss it?  I could never express into words just how much I miss it!  I do not believe I have created a piece of artwork that stands up to anything I created before I was diagnosed.  So yes, I miss it.  But do I miss it enough to risk the rest….NO.

Bipolar doesn’t just include the extreme lows of depression and the euphoria of mania….it also includes uncontrollable anger, confusion, for some a loss of time, and a myriad of other symptoms…always to the extreme.  I used to notice when I got happy from something, it simply didn’t stop.  I didn’t just get happy, it kept growing and growing….oh it’s so hard to explain, but that’s how I felt about most of my emotions.  The emotion would start, like any normal person’s emotion would, but my emotion wouldn’t stop….it grew, to the point where I felt the emotion was no longer mine, I was the emotion.  I have huge gaps where I simply lost time.  I have no idea what happened during that time.   There have been out of control arguments, but I can’t remember anything about except the anger.

When I first started getting serious with Stuart I decided I had to be honest with him if we were going to have a real relationship.  It was very hard to tell him I have a mental illness, I am Bipolar.  Due to this, I have no idea how many men I have slept with.  He took it like the man he is, with grace and sympathy.  He held me while I cried and explained more about my illness.  How I was being treated…ect.   (He is a very good man.)

There is much more to my story, some I can never tell, because I simply do not remember it all.  Some I can tell…perhaps I should write a book.  *smiles*

Please forgive any typos, or grammar errors…or anything like that.  I started to proof-read this and needed to stop.  If I have offended anyone I apologize.  I hope I have brought a little bit of understanding about what it means to be Bipolar I.  Or what it means to be me.