Journal Days of May

from my walk on Sunday – Prickly Pear in bloom

This month I’m going to do something very different, I’m going to try to keep a running journal of the month, so you might get a bit tired of me.

The idea behind this is two fold, I want to pay attention to my moods, and really see how this new antidepressant is working; and I also want to have a goal of accomplishing at least one thing a day, no matter how small that one thing is.

I’ve been feeling pretty low lately about how little I’ve been able to accomplish because of my pain, I want to prove to myself that I am more than my pain and accomplishments come in all sizes and all should be celebrated. I’m hoping by committing to posting about this on a regular basis I will force myself to stop thinking of the things I can’t do and pay attention to the things I can.

Today I woke with the continuation of a migraine from yesterday, that continued from the day before. I had an appointment with my therapist at 11am so I took a Maxalt and drank a little caffeine hoping it would take the edge off and make the day more bearable, unfortunately, it didn’t. In the waiting room there was a lady sitting directly in front of me and one sitting beside me, they obviously new each other and were having a conversation in normal tones. I was struck by the fact that I could not understand more than the rare word here and there despite the fact that it was a very quiet room. Once again I wondered how I could meet people and socialize. When I left I planned to go by the grocery store to pick up a couple of things but the pain was so great I thought I would throw up before I made it home. I took a second Maxalt when I got home, but again, it simply did not work. I decided to message my doctor and ask if there is another rescue medication I can try as Maxalt seems to have stopped working. I am still hopeful that the Emgality will help, but I need something to get me through the moment.

Today I made it to my therapist appointment! I had a lovely mindful moment with my dog, and a few other mindful moments too. I attempted to do a Body Scan meditation, but I didn’t finish. I will try to do it again before I sleep tonight.

I’m trying hard to not focus on the fact that I can’t cook dinner tonight, or get the dishes out of the sink because my back and head hurt so damn bad. So I’m avoiding the kitchen.

little update: from travels to depression

Spring 2019 in Tucson, AZ by W. Holcombe

Recap.  Let’s see, when last I left off we planned to go to Charleston, SC in September for our anniversary; there was a possibility we might have to move; and I was getting a hair cut. Turns out none of those things are happening or happened.

Trip.  After researching a trip to Charleston it just didn’t seem like the smartest thing to do this year. The trip was going to cost us more than twice what we had originally budgeted for our trip to New Mexico, I’ve been to Charleston hundreds of times, Stuart really has little desire to visit there, we weren’t going to be able to see as many people as we’d like and still have a romantic trip…there were just too many things that said this was not the trip for us. We decided it would be best to take a second trip to specifically visit with family and friends, and we are going back to our original plans of going to Albuquerque and Santa Fe to celebrate our 15th anniversary.

Move.  I’m relieved to say that we do not have to move, our landlords have decided not to sell the house right now. The house has a pool and the best time to sell is during the summer, there are a few things they want to do to the house before selling it and they wouldn’t have been able to get it done in time to get it one the market for the pool season, so they have decided to wait.   That is a huge relief.  Soon we’ll be house hunting.  That can be fun, and or ahhhh.  Hopefully, it won’t take long to find the perfect home for us. 

Hair I ended up not getting my hair cut. It ended up being a not so good day and I just couldn’t go. I had been up most of the night with nausea, and when I don’t sleep the next day is precarious.  I haven’t made a new appointment yet.  I have a case of the nerves about it now.  As much as my long hair is hard to wash and gets everywhere, it is very easy to just throw it in a pony tail, and I’m used to it.  I think I’m a creature of habit.  What if I really mess it up?  When I was younger I’d think, “It’s hair, it will grow back”  Now, my hair is much thinner, and I’m not too sure it will grow back.  Damn I’m old.  hahahah

Migraines. I’ve been on the new migraine preventative, Emgality, for a month now. I was told not to expect a reduction in migraines the first month. I talked with others and most on the boards noticed some difference.  Here’s my experience:

In February I had NO migraine free days and took medication for 10 days (the maximum number of days allowed) . In March I had 2 migraine free days and took medication for 10 days. This month, I had 5 migraine free days, and I’ve taken meds for 7 days. This may not sound like much of a reduction, but I haven’t had 5 migraine free days in a month in as long as l can remember. My maximum free is normally 2, and I always take the medication for the maximum allowed number of days. This week I actually reached for a rescue med at the first sign of a migraine, like you are supposed to, instead of waiting until it hit an 8, because I wasn’t afraid I’d run out of allowed days before the end of the month. I took my second shot yesterday, cross fingers for me that May brings fewer migraines.

Bipolar Depression.  This week I broke down and started a new antidepressant.  I tried hard to pull myself out of this funk, this sadness, this feeling of utter worthlessness, but I haven’t been able to.  I told myself it was situational, it wasn’t me, and I could get past it if I worked on it.  I’ve been working with my therapist and I do have things in my life that can cause depression, but the situations, and my coping with them, are getting better, but the feelings aren’t.  It’s time for a little help.  I’m having very mixed emotions about this and I’m not sure why.  I feel like I’m always going to be a bit off anyway.  I’m never going to be normal.  I’m always going to be bipolar.  When do I stop and just say, this is how I am and it’s how I’m going to be.  This is my normal.  Live with it.  No more medication tweaks.  No more added medications.  But I want to feel better.

Genetic Test for Medication

When I first started seeing my new psychiatrist she asked me if I’d had genetic testing to determine which medications would work best for me, I hadn’t, so she asked if I was interested. Of course I was interested! I was then given 2 swabs to rub on the inside of my cheeks and off they went to the lab at GeneSight, within a few days the results were back.

You can read a lot more about GeneSight and see an example of what an actual test looks like on their site. To see a detailed example of  test results click here. It will take you to a pdf. I was going to show you some of mine but mine are black and white copies and aren’t nearly as pretty as the actual test results, and mine has over 9 pages of information. (I think some is repeated to give more in-depth information about it, but golly, that’s a lot of information.) I will however talk about some of my results.

Sample of one page of a GeneSight report.

After receiving my results we started going though it all to see what medication therapies would be best for me. It was very surprising to me how many medications I’ve been on in the past that were listed in the “Significant Gene-Drug Interaction” category. I also found out that this test really didn’t show which drugs I would have severe side effects to. For example, all antipsychotics. There are a few that are listed as “Use As Directed” that caused me severe Akathesia (the need to constantly move) and muscle twitching, which can become permanent.

We went through all of the medications on the list for Antipsychotics, Antidepressants, Mood Stabilizers, Anxiolytics and Hypnotics, Opiods and Non-Opiods. I’m not really sure why I was tested for opioids and non-opiods but I will be taking that to the hospital the next time I have surgery. (hopefully that’s never)

I’ve been told I’m a complicated case. I’ve tried a lot of medications in the past, some worked for a while and stopped and some never worked. We started going through one that worked for a while first. Lithium. When we tried Lithium I started to show toxic signs before I got to a therapeutic dose. We tried Depakote, I felt better and got to a therapeutic dose but it caused so many side effects that I couldn’t take it. (my stomach hurt so much and caused me to have severe retching, it was most painful, and this went on while I was on antibiotics so I blamed it on the wrong drug for a long time, finally we figured out what the culprit was and I had to stop it.) So then we tried Vraylar, an Antipsychotic, almost immediately I started having symptoms of akathesia. It wasn’t as bad as it was with Latuda, but it was starting, so I was put on a drug to help control them. It did but I still had this constant hum that made me feel like it was going to start all the time and I was still a little manic. You may remember the post about me talking all the time. I saw my psychiatrist during that time and could not stop talking during that visit, it was most disturbing to me. I can’t even remember what she did to change my medication at that time, I believe she added another medication. I know at one time I was on five drugs from this one person….or was it six? I’m still on a ton, but I’m tapering off 2 so that will make it less and one of those should also take over a medication for a condition I’m being treated for by another physician, so that will take away 3 drugs all together. Score.

I’m sure I’ve completely confused you. It confuses me!

Let’s see if I can make a little more sense than I have been….yes I seriously doubt it too, but bear with me. The last visit I had, I took that gene test and was ready. I told her what I had taken before that seemed to work for a long time, Topamax, all by itself, but we got to such a high dose I has severe cognitive issues, so I’d like to add it to the Lamotrigine I’m already on, both of these are mood stabilizers, that way I don’t have to have such a high does of Topamax and shouldn’t get to the point that I have cognition problems. (I was over 400mg before now I will be at 200mg, much more doable I think) Topamax can also help my migraines and my Idiopathic Intracranial Hypertention, so that’s a great thing.

I’m also seeing another psychiatrist on the 28th for a second opinion. I’m not thrilled by how this has been handled, all the drugs just pushed on me, and at one point when I was at my worst and asked what to do if I was in crisis, I did not feel it was taken seriously. I was told to go to a certain hospital, but was not given the information. How is someone who is in the throws of a severe mixed mania episode supposed to remember what psychiatric hospital this woman spoke of to find out how to get there, and I was not in the frame of mind to ask her to write it down. I was a complete mess at the time. It’s times like that that patients really rely on their health care professionals, and too often they fail to live up to what is needed.

I’m still a lucky one. I have insurance and can actually go to a psychiatrist and get help, there are countless others out there who can’t. We often tell people to reach out when they are in pain, but if they can’t pay for help, they are simply turned away. This country treats their citizens like garbage. If it’s unsightly, throw it away.

Please support mental health facilities who treat those who can’t afford care, there are so many people who are homeless because they have no where to go for treatment. Take time to be kind.

Have you tried GeneSight? Would you if you haven’t? Do you think it’s beneficial?

I do think it’s a great place to start. It’s telling me if certain drugs metabolize faster or slower than they should, and well all kinds of things. Be sure to read more at their website if your interested.

Psych 101.2

I saw my psychiatrist today, it was an interesting visit. I am feeling much better than I was. No more rage, but Stuart did admit I’ve been talking more, which was quite obvious in her office. I just talked so much and so fast it was crazy. I seemed to have been extremely happy and just couldn’t control it. I was thrilled that she was finally speaking up and I could hear her. She was even trying to slow down. She is normally very soft spoken and talks very fast with a Russian accent which makes it impossible for me to read her lips well. If I can’t hear her better, I’m lost. Stuart normally has to take the lead in my visits. Today I got the giggles, and when we got outside I busted out laughing. I thought it very funny that I was bouncing off the walls in her office. The whole thing seems very surreal.

It is now obvious that I am still having a manic episode, but it’s much better than it was. The main symptoms have been the extreme talkativeness, sleeping very little, and doing more than I’m really physically able, and today uncontrollable giggles. My Fitbit says that I’ve been getting at least twice as many steps per day than I normally do. I’m thrilled about that and hope I can keep it up; however, completely reorganizing my house and cleaning like crazy, that is taking a bit out of me, but I’d really like to finish. Oh, and I’m forgetting things, someone can tell me something or I can tell someone something then I can’t remember the conversation…that’s weird.

She asked me if this was normal for me when I have an episode. I told her I haven’t had a severe episode in almost 30 years, or more! This is new territory for me. I have had a couple of depressive episodes when my medication needed to be adjusted, but I could always tell myself that I knew it would end, and that got me through it until I could get my medication leveled out. True mania hasn’t hit me in a very long time. To be honest, when I had manic episodes before I was stable I would paint like crazy (often days at a time), lose time (meaning time would pass and I didn’t remember I didn’t realize it, or remember what I did during it), spend a lot of money (I once bought a Jeep on a manic swing), do very risky things (like drive to DC and meet with someone I’d only talked with on the phone) and be very promiscuous. Now, I’m not doing all of that, I did always talk a lot though. After I was diagnosed talking a lot was a sign to me that I was a bit manic, but nothing like I’ve been the past few months.

I’m grateful that we have found medication that seems to be working, it just needs to be adjusted. I hate that it’s taking more meds than I’d like to take, I’m hoping after I get stable for a while we can work on getting me off a couple. Today she increased the main med, took away something, and added another to help me sleep, hopefully. I’m having to take another drug to stop the akathesia that started with the new mediation, it’s an anti-psychotic and I’ve had trouble with those in the past, but this is a newer one that is less likely to cause this problem. Yeah, right. The drug that stops the akathesia is normally a blood pressure medication, weird huh?

So we’ve solved the riddle of why I’ve been talking so dang much. I can now stop telling myself to just “Shut the F up!”

so how’s your day been?

**photo of self manipulated with PhotoLab app. Sole ownership belongs to me.

A Really Long Update

water droplet on sage leaf

I’ve been saying that I’m “working on a post” for a while now, but I haven’t.  I’m not sure why.  I haven’t been too busy.  I think I’ve just been avoiding talking about things.

My bipolar episode has lasted much longer than I ever anticipated.  I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on.  After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again.  This is the first drug I was put on when I was first diagnosed.  It worked for a very long time, but it damaged my thyroid and we decided to try something else.  Fortunately, at the time, I responded well to the alternative medication.  Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast.  After being on it for about a week I could tell a huge difference.  I’m still having that low hum that makes me feel like I’m going to explode at any moment.  But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.

That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me.  At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything.  Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously.  Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a  (disphoric mania) mixed stated bipolar episode.   Yes, I did say, mixed state.  I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy?  Yep, I felt that way too.  Thankfully, it’s calming down and I’m feeling more like myself.

Unfortunately, I can’t say the same for my health.  The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin.  I lowered my head, took my meds,  and told them to continue.  I was sure it was going to be a quick attack and I’d be okay in just a little bit.  I might not be able to eat, but I could take it with me.  I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant.  I got Stuart to get me a throw up bag from my purse and I clutched it tight.  I told him it was BAD, REALLY BAD, and I needed to go home.  I motioned for him to get the food to go.  Hey, I wanted my pancake!  I really didn’t think about how hard it would be for me to walk out.  I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to.  The sensation of  being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it.  I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse.  I clutched on to Stuart for dear life.  It was absolutely mortifying.  The only thing that would have made it worse,is if I had thrown up too.  I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore.  Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down.  I also never feel the psychoactive effects with this ratio.  Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public.  I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting.  But I digress….  This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us.  He also handled it with grace and was very helpful to Stuart.  Not that I really noticed at the time.

I’ve had a lot of challenged with my balance this past month.  Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family.  I am very disappointed that I can’t drive though, having that feeling of independence was nice.  I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive.  That all changed.  I accept it, but it makes me sad.

I found a new ENT and I really like his so far.  He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really.  He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible.  He understood.  He suggested trying Benedryl everyday because it’s a vestibular suppressant.  I never knew that.  I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes.  Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping).  I was so very impressed with that.

I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.

I’ve done something that I’m afraid I may have a very hard time pulling off.  We had planned to be in our house by now and we planned to host Christmas there.  Well….I decided we still needed to do it, but man is it going to be a lot of work.  I’ve invited the whole family, and one friend. That’s 6 adults and 2 children.. 

But this is the first Christmas that Stuart’s step-mother will not be home.  I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration.  We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there.  So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.

I’ve been trying to make cookies, the kind you decorate all pretty with royal icing.  I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet.  Problem is, as I have been working on a new recipe I have to keep tasting it.  This stuff is super sweet…cloyingly sweet.  So twice now, I’ve had a hypoglycemic crash.  Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up.   Yep, blood sugar drop.  Now I’m not even sure I ever want to decorate cookies.  My back always hurts when I do it anyway.

Oh…other challenges this week.  I had my physical on Monday.  All my numbers were good!  Even my triglycerides, they have only been normal one other time in my life. Shockers!   However, I was having a slight pain in my kidney area and asked if she’d check my urine.  I’m so glad I did!  By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI.  HAHAHA I found that amusing because I really had no idea when I asked for the test.  My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t.  So now I’m taking antibiotics…eww.  Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test?  Phew!  that was lucky.

I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis)   1% of the people who get this vaccine have a reaction to it.  Yes, I am that special!  The injection site swelled up and turned read.  It measured about 3” in diameter, and it was so painful.  If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain.  I couldn’t lie on that side for over 3 days.  Finally it is feeling almost back to normal.   Golly, that was an experience.

There I think I’ve caught you up on all things Wendy for now.

I hope you are having a joyful holiday season.  Try not to overdo, as you can see I probably am…..big dummy.  😊

*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe.  Please do not use without permission.  All rights reserved

Unsteadily Unstable

For the past month or so I’ve been filled with an inner rage and desperation that has been screaming for help.  I was hearing all the anger, fear, and sadness, but I couldn’t hear the call for help.  This week I finally heard it.  I finally understand that I haven’t been just reacting poorly to the stress in my life, or having mood swings because of a hormones, no, I’ve been having a bipolar episode.  I still know my moods aren’t where they should be, but it’s better than it was, and I will be seeing my doctor about it very soon.

I have so many things I want to say, I don’t know where to start.  hmmmm.

I have been reading about bipolar symptoms, specifically rage, and saw many things that are too familiar.  The rage can be set off by the smallest of things, often something I would never even consider getting mad about on a normal day.  The anger starts and builds quickly to a full blown rage!  After all the screaming and throwing things, and who knows what else, is over I feel better for about 2 minutes then I suddenly think, “Oh my god, What have I just done?”  Bipolar rage if often associated with mania,  but can also manifest during depression.  For me if the rage is from a manic episode I blow up fast and furious, but it burns out as quick as it started, leaving only the guilt and hurt behind.  When the rage comes during a depression episode I will have a huge blow up and it will go down, but he anger is still there, and I will blow up again, or I just stay angry for a long time.  The rage inside wanting to break through the surface.  So rage during mania is like a short burst, the rage during depression is a short burst followed by underlying anger and possibly another burst or two.  Both can cause everlasting damage, but the later is much harder for me to deal with.  When the anger doesn’t just go away after a rage episode I start to think it’s not caused by my mood disorder I’m just a bitch, and I start getting angry at myself.  So much anger, that is so hard for me.  I’m not normally an angry person.

Sometimes I will get angry about something, but I don’t let it get to me, just slough it off – at least I thought I did.  Often when the rage hits it’s after I’ve had a few things happen that have caused me to get mad, but I didn’t feel like it was a big deal, I thought I was just letting it go.  It seems to me that it will often be a little thing that sets it off, but it’s like the last straw kind of thing, all those little things I have gotten mad about suddenly rise to the surface and that one little event that made me blow up was fueled by all those other small flames.

Rage can damage even the closest relationships.  It can cause trouble at work, with your family, friends, authorities….rage can really mess up your life.  I’m so very lucky that my husband understands that my rage may seem focused on him, but it really has nothing to do with him.  Sometimes it does spark conversations and we fix all those little things that built up, but honestly the rage is never deserved. Even though he knows all this, it is still very, very hard on him.  When I get to the breaking point I often leave.  I will pack a bag and set off.  I have no idea where I’m going, and I just get madder because I feel I have no where to go.  When I leave like that it hurts and scares Stuart so much.  During this last episode I made him cry.  My husband does not cry often.

I was mostly stable for over 20 years, but over the last few years I’ve had more than one break through episode.  I’ve needed to change medications too many times.  I’m afraid we are going to get to the point where nothing works.  In addition to Bipolar I disorder, I also have generalized anxiety disorder.  Trying to find medications that treat both and I can tolerate has been a challenge.  I’m hoping the gene test I did will help with that.  I can  definitely say, that the new medication she put me on is not working, we have to find something else.

For over a month now I’ve been dealing with severe anger mixed with depression and anxiety.  I have also been getting tickled over the stupidest stuff and laugh until it hurts, but that doesn’t last long and I return to the negative moods quickly.

I think the rage has also been triggered by the return of my vertigo.  I’m back to having attacks multiple times a day.  I do think many of them are caused by migraine instead of Meniere’s because with some attacks I’ve been having aura right before it starts.  The fear has been real.  Not just the fear that it is coming back, I’m actually starting to accept that I am having a relapse, but I know the is a possibility for a remission.  However, I fear for my safety.  I’ve fallen 3 times in the past 2 weeks.  I’m back to using my walker in the house and sometimes when we go out.  (often when we go out I can use a shopping cart, or Stuart’s arm to steady me enough that I can get by for a bit)  For the most part I’ve been confined to the house, without the ability to do much of anything except watch TV.  I did sit outside once this week, but I had vertigo outside without anyone home, I had a very difficult time getting back inside.  I don’t think I’ll be going outside when I’m home alone any time soon.  I did ask my landlord yesterday if he would be a backup for me if I fell and needed someone and Stuart couldn’t get home, gratefully he said he would.  Of course, he also might not be available, but I’m relieved to know there is someone can call if I need it.

I think that’s enough for today.

I’ll leave you with a few photos I took yesterday of the flowers around my yard.  I miss seeing the leaves change colors, but I’m seeing a different beauty in the desert.  (most of these are Lantanas, technically a weed from Mexico.  It is very pretty and drought resistant. You will find them all over the area.  I’m thrilled to see this gorgeous native plant almost everywhere I go)

 

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

20180903_125643

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.

My Bipolar Self Care

spirit me purple
self portrait

After Saturday’s bout with bipolar rage and my continued mood fluctuations I’m reminding myself about self care. Eating right, getting enough sleep, getting some form of exercise, keeping a routine, abstaining from caffeine, alcohol, watching or reading anything that is upsetting, or anything that may alter my mood, ……these are a must when dealing with my bipolar disorder.
I’m paying very close attention to my moods and trying to step back and refocus before things get out of control. (yes, I’ve had a few moments of quick anger, but I took a step back, cleared my mind and took a deep breath. I’m happy to say it’s been working well, it’s just hard to stay on top of)
I’m trying hard to stay in the moment. Worrying about what has happened, or what may happen will only make things worse. That worry could be a trigger.
 
I’m attempting to meditate more. Meditation helps to calm my racing thoughts, but I have to realize it’s okay to have those racing thoughts while I’m meditating, I just note them and come back to my breath without judgement. That’s the big thing. No judgement. Beating myself up doesn’t help matters, it will only cause me more anxiety. Being gentle with myself.
 
I have Stuart watching me too. I know sometimes my moods will shift and I don’t realize I’m overreacting. We realized that if he said I was overreacting I might get really angry, instead, when he sees that I’m not acting like myself, he hugs me.  So far, it’s worked.  I was started to get worked up and angry, and Stuart came over and just held me and I melted.  I know there are times that I would not respond well to this, but after talking about everything this was the best option we could come up with, and it’s working…so far.  Another huge thing I’m making sure I’m doing: talking with my husband.  We are working hard to make sure the lines of communication are open.
I saw my psych doc yesterday.  We are adding another mood stabilizer to the mix that helps more with the anger aspects of bipolar.  After I’m on it for a while, we will probably reduce the other one I’m on and hopefully get rid of it, and let the new one take over.  Funny to say “new one”, I think it’s the oldest bipolar med.  I’m going back on lithium.  Wish me luck!

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.

 

My Story – Being Bipolar

wendy hairOn this the last day of Mental Health Awareness Month I’ve decided to tell a little about me.  I have a story.  I feel it needs to be told.  If for no one else, this is for me.  (This is the very condensed  PG version.)

Something was wrong.  I didn’t know what it was, but I was wrong.  I was wrong inside.  I didn’t react to things the way other people did.   I knew it.  I could see how other people were different.  I was always told to be myself.  But I just wanted to be like everyone else, I didn’t understand what it meant be  “myself”.  I spent days in tears feeling like I had this black cloud over me.  At a very young age I longed for my life to end.   Other days I was flying high.  I could not control my thoughts from going everywhere, I could not control my actions, I could only follow them.  This wall all considered a natural part of growing up.  I was just a moody child, then a hormonal pre-teen, a troubled teen….  I look back and don’t know how I, or the people closest to me, survived.  There are many stories from this time that are very hard to tell.  They may come out at a different time.

My ups and downs carried on for years, and years, and years…. the older I got the worse it was.  After all when you get older your actions have many more consequences.  However, when the moods were swinging to either end, those consequences simply didn’t exist in my mind.   On the down swings I was fighting for my life, literally.  On the up swings I couldn’t rationalize things.  I couldn’t see beyond the emotions.

After a failed suicide attempt at 25, I finally started getting some mental health treatment.  I was told I suffered from Manic Depression, and was put on Lithium and an antidepressant and started seeing a therapist.  Maybe if I had just been able to stay the course that I was originally put on life would have been different, but things changed.

I was re-diagnosed a number of times.  Things changed so much over the next few years it was a constant battle of up and down trying so hard to get a grasp on reality.  The biggest mistake that was made, I was told that I did not have a mental illness, I had hypoglycemia and the fluctuating blood sugar levels were causing my mood swings. I was so relieved that I didn’t have a mental illness.  I was normal like everyone else.  I simply had to watch my diet and everything would be alright. I believed this for years and tried so hard to control everything with my diet.  If things got out of control, I would beat myself up for not following my diet strictly enough.

People couldn’t see just how bad I was because I was still able to hold down a job, even if I changed jobs frequently, I seemed normal, I was just “moody”.  I went through friends like water.  Friends I made when I was manic, couldn’t stand the depressive side, and friends I made when I was depressed, didn’t understand the up me.  Friends I made when I was in my normal state couldn’t understand my swings and they simply disappeared.

I had a job, but I also had a lot of debt.  I lost days.  There are huge gaps in my memory.  I’ve met people while I was in a normal state and had no recollection of meeting them before.  I didn’t remember men I obviously knew very well.  I did drugs.  I stayed up for days.  Risky behavior?  There were no thoughts of the risk.  Nothing could hurt me.  And if it did, so what?  In both states there was not much thought about my own safety.

Then the day came when the depression took hold so tightly I held a razor to my wrist and started to slice.  I just made the most cursory of cuts, deciding exactly the way I should do this, how deep did I have to go, how much would it hurt, how long would it take….then suddenly I thought….The Mess.  There will be such a mess and my roommate will find it. Someone will have to clean up the mess.  That thought saved my life.  That thought gave me enough pause to call a suicide hotline.  I would not tell them where I lived but I promised to go to the out patient center of the mental health department and talk.  I drove there, and when I got there I talked and told what happened that night.  I could not promise I would not harm myself if I left.  I honestly don’t know if I could have or not, but I knew I needed someone to help me.  I needed to know for sure that I could get through the next day.  I knew if I said I would not be a threat to myself or others then I would not get the help I desperately needed.

Since I was not able to say I would not harm myself I was not allowed to leave, I was told I as going to be admitted to a mental health facility.  I admit I actually felt a relief.  I suddenly felt safe, at least for the night.

The police came and took me to the hospital.  I was entered as a non-voluntary admission.  That is the only way my insurance would pay for this, but I had insurance now, this was what got me into this facility instead of the state hospital.  I had no idea the amount of debt I was about to get into.  I needed help, that is all I thought about.  I no longer cared what people thought of me, I no longer cared if this would follow me forever, I only wanted to lie down and never wake up.  I knew these thoughts had to stop, I knew if something didn’t change I would end my life, soon.

(If you would like to know more about my stay in the mental hospital please see my post: Inequality in the Mental Health System.)  The stay in the mental hospital changed my life forever.  I was there longer than I thought I would be.  The little overnight stay turned into two weeks,  but when I left I was in the mental health care system.  I had group sessions set up, I had an appointment with a new psychiatrist and therapist.  I had a new lease on life.  With another wrong diagnosis, Borderline Personality Disorder.

Soon after starting to see my new psychiatrist it was then determined that I do indeed have Bipolar I disorder.  I started being treated with Lithium and other medications again and things finally started to get on track.

It took some time to get the medication just right.  It took a lot of time in therapy.  It takes a lot of work to get things right and get better.  It takes a lot of work to keep struggling through the system.  It takes a lot of work to help yourself when there doesn’t seem to be an out.

I’m a lucky one.  I was able to find help.  I was able to get a correct diagnosis.  I was able to get a treatment plant that worked.  I’m still able to get the help I need, when I need it.  So may people are not as lucky as I am.

There are many obstacles in getting mental health care.  I fought hard to get where I am today.  I still fight hard to ensure my mental health is a priority.  I will never give up.

Too many people are fighting for mental health care and have so many obstacles in their way.  If you are one of these people, please don’t give up.  Reach out. In my experience, things don’t always go smoothly, but getting help meant my life is so much better than my life was before.

National Suicide Prevention Hotline    If you are in crisis please call.  1-800-273-TALK (8255)

American Foundation for Suicide Prevention

Mental Health Alliance (This site has a lot of useful information, including help getting care without health insurance.)
National Institute of Mental Health
Seeking Mental Health Care: Taking the First, Scary Step (this is a very useful article from Psych Central)

Mental Health Care Awareness Month is closing, but we should always be aware and working to obtain equal and affordable mental health care for everyone without stigma.