Late Night Rambling

Me, manipulated in the #photolab app

It’s 1:29am and I can’t sleep. I hurt all over, and I’ve been having vertigo and migraines with all the symptoms that go with it.

I’m posting from my phone so who knows how this will turn out. I doubt I’ll be able to edit it very well. I apologise for errors ahead of time.

It’s been over 2 months now since Stuart got laid off, I’m not tired of him, but I do miss my private time. However, I’ve been having such an increase in symptoms it’s probably best that I’m not alone all that much.

I’m tired. So very tired.

I’ve had a non-stop migraine for almost two months now and I, at least partially, blame my doctor. I had a tele-health appointment with her the beginning of May, right when we were increasing my Spravato treatments back up to two a week and I had every reason to believe that my migraines would get better again. They didn’t, they got worse, and I have no rescue medication that works. I got in touch with her less than two weeks after my appointment to ask for help and she said I need another appointment, so I’ve been waiting two month! The soonest they could get me in was July 17th. I’m finally going to see her next Friday. Now I have a Status Migraine, that’s a bitch to treat. I don’t know if this would have happened anyway, but I feel if I’m in this kind of situation she needs to take care of her patient, so I’m searching for a new doctor. I’m tired of her never being available when I need her.

I had the freakiest, thing happen to me earlier. I was sitting on the toilet and it felt like the toilet started moving under me. Normally when I have vertigo it feels like I’m moving, or the whole room is swaying/rocking..ect. it has never felt like the seat under me is wiggling. Soon I did feel like I was moving, well, it felt like my brain was. It still does just a little, much more if I move my head. I’m so grateful I have an amazing husband who will help me off the toilet and to the bed when things like this happen.

When I got to the bed I could literally feel my brain trying to spin in my head. My eyes weren’t all the way spinning, my vision was a little off, but not like it can be. I rarely have that sensation any more, thank goodness, it’s really hard not to throw up when you see the world spinning around you. It’s hard enough as it is. Right now, When I move my head it feel as if my brain rotates and moves around in my head. My internal gyroscope doesn’t work. My vision spins for a few seconds, and I can feel bile coming up my throat. The only hope for sleep is to lie perfectly still and hope I don’t turn over in my sleep until this has passed.

Now it’s after 2am, I don’t know if the pain will allow me to sleep, but I’m going to try.

Light Switch Flipped

Image by Arek Socha from Pixabay

This is going to be just a (relatively) short update, if you read my last post you will have a good idea of what goes on during my treatments. My dose pack was increased back to 3 (84 mg), but the “trip” that I had the last 3 treatments was not as intense at the first time. It was pleasant, fun even, but not the same. My husband is so patient to put up with this, he says it isn’t bothered by it at all, but I have to wonder. He is not the kind of guy to just let loose and have fun with you when you are intoxicated and he’s not, and I’ve only seen him a little drunk once; and let’s just say he cannot sing but he’s a much better dancer when he’s a bit tipsy.

An amazing thing happened at the end of the last treatment, I felt as if a light switch flipped, and I looked at Stuart and said, “So this is what it’s like to not be depressed.” It wasn’t the happy silly feeling I was having when I was high, of course I wasn’t feeling depressed then. And during mania I don’t feel depressed. This is different. As a friend asked, “Is it like in the Wizard of Oz when the Black and White turns to Color?” YES!! Suddenly the cloud is gone. It’s just gone. If things weren’t so crazy in the world I’d probably be really happy right now, but as it is, I’m handling things really well. I had a little spell this weekend where things slipped in and I felt the cloud closing in, so I don’t think I’m quite to the point of going to a maintenance dose yet, but This is AMAZING!

I had another vertigo spell that lasted 3 days this week. It was mostly severe disequilibrium. I had no balance on Friday, I thought I had an ear infection. I could not walk without Stuart’s help, and by help I mean almost carrying me. I was stuck in a chair the whole weekend and couldn’t do anything for myself. It brought back the feelings of complete helplessness I had when I was at my worse. That is what triggered the small bout of depression, but it probably would have been worse before this treatment. I’m a bit concerned that I’ve been struck with vertigo each week I’ve had these treatments. If it happens this week, I’m really going to think SPRAVATO might be triggering my Meniere’s. If so, I hope it gets better the longer I’m on it. If that’s not the case, at least in maintenance I’ll only need it once a month, maybe getting it less often will lessen the risk.

So that’s all for this news. I have more to tell, but that’s for a different post.

Migraines Suck

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!



Journal Day 2 – Yoga Therapy

It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.

Firs Saguaro bloom I saw this year.

My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.

Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.

After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol

We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.

I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.

There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.

Thankful Week 5 – #TToT

I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

10 things I’m thankful for the 5th week of 2019 are:

  1. Possibilities – Just as I started to write this post I received a message that I may be able to see a specialist in San Diego I’ve been wanting to see for a long time. A special thank you K for making this possibility happen.
  2. My new therapist – I saw her for the first time on Wednesday and if first visits are a clue as to how things are going to go, I’m going to love going through this process with her.
  3. Vertigo that doesn’t last long – Last night I bent over and the world started to spin, I sat down and waited but it kept going. Stuart helped me to my chair and shortly afterward the spinning stopped. Yay! I still felt like I was moving for a while after, but the visual spins had stopped and that’s something to really be thankful for! Plus the meds gave me a good night’s sleep. 😉
  4. My slow cooker – Organic chickens were on sale so we bought 2 and I was able to cut one up and use some of the bones to make stock in the slow cooker. For the other, I roasted the whole bird in the slow cooker, comes out like rotisserie chicken, so good, so easy, and something to eat on for days. Something to really be grateful for when I’m not feeling my best.
  5. Imodium – need I say more? I ate way too many grapes and the next day I paid the price. Thank goodness there’s an over the counter drug to help stop me from running to the bathroom all day. ew.
  6. Shoe strings – I have a pair of yellow high-top Converse that I wore during the reception of my wedding, almost 15 years ago. For years I haven’t had shoe strings for them. I don’t remember what happened to the first pair, the shoes look almost new, so I can’t imagine they just wore out. hmmm? I’ve bought numerous shoe strings that were supposed to fit and they were always either too short or way too long. Well this week I was wearing another pair of sneakers and the strings were wayyyyy too long, so I thought I’d try them in my “wedding” shoes….voila! I can now where my yellow high-tops with joy!
  7. Dinner date set – Finally we have a date set for a dinner party we are throwing at our house. This dinner was originally supposed to be Christmas dinner on December 22nd, it has been rescheduled many times, for different reasons, mostly because of me. I am determined that no matter what it will go on this time! And celebrate my husband’s birthday at the same time!
  8. Another possibility – My therapist recommended me for a study about chronic pain that I don’t qualify for…darn it…but I decided to ask some questions and the group gave me some good information. Now I have the name of a massage therapist who treats chronic pain, he is actually helping with the study, and I have a chronic pain support group in the area I can check out. Good things happen sometimes if you just ask.
  9. Rover.com – we have been needing to find a pet sitter in the area, not that we are going on a trip soon, but if something comes up we need to have a sitter all set up, and our little girl is very picky about who takes care of her. After getting in touch with at least 5 sitters through Rover and meeting up with 3 so far, we know we’ve found at least one that Kiki will adore, and she just lives around the corner! I’m so thankful that we found her and so thankful there is a site like Rover that makes searching for a pet sitter so much easier.
  10. My heating pad – Something as simple as a heating pad, which I’m using right now, can bring such comfort to me. I’m so very thankful that the heat relieves part of the pain in my back and hip recently.

That’s my 10 for the week.

Extra – I’m thankful my Lantanas are blooming. So are the butterflies.

How about you? What are you thankful for this week?

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)

 

It’s challenging

I have no idea where to start this post.

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud.  I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life.  My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it.  My meditation practice has never been as regular as I’d like, but lately it has been non existent.  Why is it when I need this the most, I have been unable to simply let that shit go.

Living  in close proximity to family has been more stressful than I thought it would be.  We haven’t been able to help my father-in-law as much as we thought we would.  He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy.  We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would.  She has no idea who we are and I’m afraid that is making her a little frustrated.  I’m not sure about that though.  She is very pleasant to be with, she talks and talks, I just wish I could hear her better.  Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be.  Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate.  She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips.  I wish I knew sign language so I could request an interpreter.  I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed.  I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss.  That kind of amazes me.  This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us.  Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse.  Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy!  When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better.  Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse?  I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it.  I’m even using my walker again, not every day, but I’m definitely getting use out of it again.  I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling.  I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time.  I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me.  I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me.  The results are very interesting.  I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day.  If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site.   https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to.  Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats.  Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

 

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

 

 

Mindfulness Monday – Thich Nhat Hanh On Fear

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When I am in need of comfort, and have a desire for knowledge, I often turn to the teachings of Thich Nhat Hanh.  His words resonate with me and make me feel understood.  I hope you find his words as compelling as I do.  (Thich Nhat Hanh is often referred to as Thầy, meaning Teacher, throughout this post I will also refer to him as Thầy)

Below you will find quotes by Thích Nhất Hạnh, from his book Fear: Essential Wisdom for Getting Through the Storm. with comments by me on how these quotes reflect my life right now and help give me peace.

 

“The only way to ease our fear and be truly happy is to acknowledge our fear and look deeply at its source. Instead of trying to escape from our fear, we can invite it up to our awareness and look at it clearly and deeply.”
― Thích Nhất Hạnh

During the past week I have been having vertigo again, even though I’m feeling much better now, the fear of the possibility that things could get worse has been creeping up.  My first instinct is to run from this fear, or push it down and refuse its validity.   After reading this quote I realized how much I have been trying to escape from my fear, I now understand that I need to investigate it’s cause and think about it rationally.

“When we recognize that we have a habit of replaying old events and reacting to new events as if they were the old ones, we can begin to notice when that habit energy comes up. We can then gently remind ourselves that we have another choice. We can look at the moment as it is, a fresh moment, and leave the past for a time when we can look at it compassionately.”
― Thích Nhất Hạnh

Thầy really hit the nail on the head with this one.  For the sake of this post I will only talk about what has presently caused me to replay old events – a vertigo attack.  My automatic response to this attack was a flash back to my worst days experiencing vertigo.  The many days where I could do nothing but watch the world spin were suddenly replaying themselves in my mind.  It is refreshing to know that I have another choice.  I can take this attack as it is, a singular event, it is not part of my past  (well it is now…hopefully you get what I’m saying).  What happened this week was new, yes I’ve had thousands of vertigo attacks, but this was a different one, it was not one that I had already experienced, it was new.  It’s time to let the past go, to look at that time with compassion, especially for myself.

“We are very afraid of being powerless. But we have the power to look deeply at our fears, and then fear cannot control us.”
― Thích Nhất Hạnh

How liberating this quote is!  I often feel that everything in my life is out of my control, that I am powerless.  I lost so much of my independence and then got some back, the vertigo attack brought back all the times that I was so dependent on others for everything.  It’s that loss of control (power) that scares me.  Thầy teaches that we always have power over our fear, yes we will always feel fear, but if we look closely at our fears and really get to the root of it, we can then see that our fear does not control us, we control it.

 

I hope you enjoyed this variation on Mindfulness Monday, if it is well received I may do this type of post more often.  

*photo by W. Holcombe – night sky…yes it really is the moon..in Tucson.  Please do not use without permission.  All rights reserved.  ©

 

And The World Spins Madly On

Early yesterday the barometric pressure took a nosedive and my head went with it.   My head started to throb and the light was excruciating; I took meds and carried on…or I tried to.  I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup.  Then it was a sit in the chair and knit kind of day, and I was okay with that.

After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw.   I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo.  I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart.   He came and helped me to the bathroom and back to my chair.  The worst had not arrived…

As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad.  I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy.  (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds)  I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!

I tried so hard not to disturb Stuart.  He has to get up really early to go to work and I hate when I have to disrupt his sleep.  He stirred a few times and I admitted I was sick but told him to go back to sleep.  I knew I could handle it, at least I told myself that.  I did sleep some, on and off, all the while feeling like I was moving.  Every slight movement of my head caused the room to spin faster, and my stomach to lurch.  I was not doing well, but I was dealing with it.  I survived the night, and I didn’t vomit, that is a miracle.

Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down.  Now it’s all the other symptoms that go with vertigo that are still getting to me.  The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised.  It’s been a challenging day.

As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years.  It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years.  Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again.  I even bought a car a couple of weeks ago.  Now, I’m being reminded that this will always be with me.  I will never escape Meniere’s disease, and I’m scared.

The fear escalated through the night and all day today.  My thoughts keep running to the “what if”s.  What if this is a new stage and it’s worse?  What if I can’t drive and I just bought a car?  What if I need more help than is available now?  What if?????

Can you see me spiraling out of control?

Time for a reality break.  Yes, I have Meniere’s and I always will.  Yes, it is unpredictable.  Yes, it could get worse, or it could get better.  Nothing is certain.  Life is not as I expected, so I will change those expectations, or better yet, I won’t have any.  Now, it’s time for a deep breath and a good night’s sleep.  Tomorrow is a different day.