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.
Last week was my first week receiving SPRAVATO (Esketamine) treatments. I received my first treatment on Tuesday March 10th. I’m sorry I didn’t post about it sooner, it was a bit of a crazy week, as you will soon discover.
I had to fast for 2 hours and not drink anything for 30 mins before the appointment to minimize nausea and vomiting. I also took phenergan. We started out to the appointment with plenty of time to get there, we now live over 30 mins away from the office, traffic was okay then Stuart said, “I’m going to the wrong place.” He had driven to my therapist office instead of my psychiatrist office. I instantly got very anxious. I hate to be late and I was already nervous about this appointment. I’m still not very sure about where things are in this town, I think it makes it more difficult to get to know these things when you don’t drive, so I didn’t realize that we really weren’t that far from our desired destination. We arrived right on time, but by the time we got there I was pretty agitated.
First I was told that the normal person who does this was out and a substitute was taking her place, she would be back next time. I was then asked if I’d like to be in a room with a recliner or a couch, I said a recliner. Then I tried the recliner and it rocked, it moved even when it was reclined. I decided that was a very bad idea if this stuff might make you have vertigo you sure don’t want to be in a chair that moves. So we moved to the room with the couch. We talked about how the drug was to be administered. It’s a nasal spray, it comes in devices that contain 28 mg each, depending on the dose you are to receive is how many devices you use, to be self administered under supervision 5 minutes apart. From what I read you normally start at 56 mg (2 devices) and depending on how that works, you work up to 3 (84 mg). I was surprised when I was to start out at 3. Then she took my blood pressure and it was WAY too high so we had to wait 20 minutes to see if it would come down. Every time I go to that office my blood pressure it high, I don’t know what it is about that place. Maybe it’s the ride over there, my nervousness…?? Anyway, I had them dim the lights, I laid on the floor (it’s a nice, clean room with a nice rug) and I meditated. She came back and actually got on the floor with me and took my blood pressure again and it was down enough to start.
I had to tilt my head back and insert the device in one nostril while holding the other closed, push the plunger and sniff. Then do the other side. Easy peasy. I didn’t feel much, but by the time the 5 minutes were up and I was ready to take the 2nd dose I could feel it a little. I repeated the same administration and WHOOSH! Oh boy I felt that one! I suddenly felt very panicky, a bit paranoid and did not like it at all. Then I realized it was because I was fighting it. So I relaxed and just let it go, and I started to feel just fine. I felt tipsy kinda, but more high. By the time we were ready for the third dose I was giggly and had a hard time leaning my head back for it, but I got it done, and oh what a trip it was. I was told I was quite entertaining. I did not loose time, and I knew where I was the whole time. I did get to where I couldn’t understand what people were saying for a while, and Stuart had 2 heads and a third eye, but it didn’t freak me out. I laughed a lot and got very interested in the smallest things, like the top of my water bottle and the tip of my nose. I said some pretty funny things, that I probably shouldn’t repeat here, but one time I did tell everyone I loved them. As it started to slow down it was just fun, actually most of it was just fun. Something I haven’t felt in a long time. I just curled up on the couch with Stuart and laughed and joked and waited for things to get to where I could go home. The trippy experience lasted about an hour. I had to stay there for two hours from the time of my first sniff, as long as my blood pressure wasn’t too high, the treatment can make your blood pressure rise for 4 hours after. She took it and she couldn’t hear it. She waited and tried again, she finally got it and it was 90/70 so my blood pressure went way down instead of up. hahaha
So that was my first treatment. I won’t go into as much detail about the next one, there are just some more things to know about the rest of the week.
After the treatment I walked outside and started sneezing, I’m pretty sure it was because there was a big bush outside that has just started to bloom, lots of things are blooming here suddenly. I sneezed and sneezed that night until I took Benedryl. I woke the next morning with a bad migraine and vertigo. It was very cloudy and a bit rainy, so I thought it was that. I had to use my walker. The vertigo got worse. If I kept my head straight it was okay, but if I moved, rapid spins! The next morning I couldn’t lift my head without severe vertigo. There was no way I could go in to have my second treatment. I finally figured out it was BPPV (Benign paroxysmal positional vertigo). I’ve had this before a few times, but it’s been a while. The last time my doctor showed Stuart how to do the Epley manuver so he could fix it, and he did, but I had to be upright for 48 hours and it takes a while for you to feel steady enough to move around. Luckily the office was able to change things around and I was able to have my second treatment on Friday.
I got to the appointment and the regular person who oversees this was there. I had a massive migraine, so no surprise my blood pressure was high again. Once again I meditated for 20 minutes and got it down enough to do the treatment. I’m really not liking that. I have normal to low BP everywhere else. That is starting to concern me. But the main thing you need to know from this appointment is that she said I should have started off with 2 doses. So I only got 2 on Friday. It was nothing like Tuesday. She said I must have a higher tolerance. She was surprised at how I could have a coherent conversation. I felt really high, like I had a lot of marijuana, but I didn’t feel like I was tripping. Nothing looked strange, I didn’t feel different (when I had my first treatment my sense of touch was different). So for my next treatment we go back up to 3. When I first got the treatment my migraine vanished, it was bliss because I went in there at an 8+, unfortunately when it ended the pain started to return and ended up right back where it started. I really am hopeful that as this treatment continues I’ll have more lasting results.
I saw my therapist later in the day on Friday and she said I looked brighter. I was still pretty “happy”. We had such a nice visit, we just talked and talked, it was like girl friends laughing. I know it was because I had just had my treatment that day, but that was fun. You don’t normally have that kind of day with your therapist. Hahaha!
Any questions please feel free to ask me anything!
If you don’t feel comfortable asking in the comments, you can send me a private message by clicking on the About Me – Contact Me tab at the top of the page, I’m happy to answer anything I can. If you message me, be aware sometimes I don’t check my email every day, so it might take me a couple of days to get back to you.
I found out last week the ketamine (really esketamine, um SPRAVATO) has finally been approved by my insurance, and it has taken this long for me to wrap it around my brain so I could write about it.
My doctor keeps saying I’m getting ketamine, but really I’m getting SPRAVATO, which is esketamine. Ketamine is not FDA approved for treatment resistant depression (TRD), it has been used for it off label for quite some time now with very good results but it is very unlikely they will ever approve it for anything other than an anesthetic because it cannot be monetized. That’s where esketamine comes in. “Esketamine is a molecule taken from ketamine’s racemic mixture (basically two mirror image molecules which spin in different directions). As it is an altered form of ketamine, esketamine could be newly patented. As a result, corporate dollars were invested in clinical trials that led to the current FDA indicated use of nasal esketamine for TRD.” (Nasal Esketamine vs IV Ketamine) IV Ketamine has been used to treat TRD since 2010 and has a 70-80% success rate, esketamine is also showing to be very effective which makes sense since it is a molecular part of ketamine, but it has only been in use in clincal settings for a year so I don’t feel like we really know long term results yet.
I start my first treatment on Tuesday, March 10th at 2pm. I have to be enrolled in a restricted program called SPRAVATO Risk Evaluation and Mitigation Strategy (REMS) Program. It can only be administered in a healthcare setting certified in the SPRAVATO REMS Program to patients enrolled in the program. I go in and under supervision I give myself the nasal spray. Then I stay there in a quiet room, with Stuart, (there is no way he would let me do this without him being there) and I’ll be observed for 2-3 hours. You shouldn’t drive or operate machinery until the next day. For the first month I have to go in twice a week for a treatment, the second month is once a week, then it goes to every other week….eventually it goes to once a month and that’s the maintenance dose. That’s all depending on how well I do on it. I could go through the dosing faster, or I could not do well on it at all, but that is the normal regimen. I can tell you that I have been struggling with this schedule. The fact that Stuart has to leave work so much so that I can go in just to get this medication, ugh, this is awful. I’m trying really hard not to feel guilty, but it sure it hard. His boss hasn’t made this easier.
Most of the side effects of SPRAVATO are short lived but they can be pretty intense.
Dissociation (was reported 2 ways in clinical studies through adverse event reports, 41% of patients, and by using standardized scale, 61% – 75% of patients.)
Sedation (was reported 2 ways in clinical studies through adverse event reports, 23% of patients, and by using standardized scale, 49% – 61% of patients.)
Spinning sensation (23%)
Reduced sense of touch and sensation (18%)
Lack of energy (11%)
Increased blood pressure (10%)
Feeling drunk (5%)
It can also cause abuse and misuse. (I don’t really know how since you can only get it in a clinical setting. How can you misuse a drug that you can’t take home?) It can cause an increased risk of suicidal thoughts and behaviors. (Why does it say this on every anti-depressant? Isn’t this what they are supposed to stop? hmmm. Or is this different?…scratching my head on this one) Temporary increased blood pressure that may last about 4 hours after a dose (could this be because people have been spinning and dissociating, and having increased anxiety?? I’m pretty sure my blood pressure is going to be a bit high before we even start.) Problems thinking clearly (not sure I’ll notice a difference on this one) or it could cause bladder problems, such as a frequent or urgent need to urinate, pain when urinating, or urinating frequently at night. (well that could be inconvenient). **all of the information about SPRAVATO came from literature provided by SPRAVATO.
Now you can probably see why it has taken me a while to wrap my head around this. The fear of having a vertigo attack has been real, and the thoughts of dissociation is a little scary, but I’ve been meditating and trying hard to simply stay in the moment and not get too ahead of myself, if I keep on thinking I’m going to get vertigo that’s a sure way to make that come true. I’m going to try hard to go in there with no expectations, simply aware of what may happen and having good thoughts about how this may help.
This is not only for my resistant depression, it is also going to hopefully help my migraines. It has been shown to help, reduce migraines, so I really am going in this optimistically.
In the upcoming weeks, as soon as my insurance approves it, I will be receiving Spravato (esketamine nasal spray) for depression. I wanted to put together a post explaining what it is all about it, then I found this post and thought I couldn’t possibly do a better job. So I hope you don’t mind if I share this with you. Please note that this covers all forms of ketamine, if you want to just read the “How Effective Is It” statistics surrounding what I will be receiving read sections 3 and 4. I got so much information from tbe post started to not even watch the video attached to it, but then I noticed that it is captioned so I went ahead and watched it and it is very interesting. It does get a little in depth in the science part of things, so if you are interested in that kind of thing, it’s worth it, but if that bores you, you might want to skip it.
Do you have any experience with ketamine? Know anyone who has? Do you have or know anyone who has, medication resistant depression? Or like me, the meds stopped working or there are just way too many bad side effects? I’d love to know other’s experiences.
Ketamine and Esketamine
Drug Class: NMDA Antagonist
How it works: Blocks a channel for a chemical in the brain called NMDA. This, in turn, increases the effects of another channel for a chemical called AMPA. This leads to increased effects of BDNF and mTOR. The increased effects of BDNF and mTOR helps the brain to rapidly form new […] Ketamine and Esketamine — Experiments in Happiness
I have found myself dreading coming to my blog. I don’t want to talk about me, but I have always kept this blog open and honest and I don’t want to stop that. As I look back at the many years I’ve been writing here, I’ve been up and down and up and down and up and down….have I really made any progress? How do we measure progress? I think that’s the real question, and not one I’m going to answer today.
I have a lot going on right now and I simply don’t feel like talking. Ummm, that may not be true, I just don’t want to feel worse when I do. I’ve reached out and been ignored…not sure what happened there. I spilled my guts to someone who told me I could always talk to them, when I finished they said, “WOW. You have a lot going on. Praying you get some relief very soon. Love you bunches.” and that was the end of the conversation. I cried for most of the day after that. That is what happens when you try to talk to someone who does not have chronic or mental illness. She may love me, but she has no clue. And it makes me VERY wary to talk to anyone unless they are my peeps. But I don’t have many peeps and I don’t want to wear out the few I have. I do have a very good friend who hears almost everything and she is amazing, but she has her own crap going on and I can’t just keep unloading on her all the time. Of course, Stuart’s here, and he has never made me feel like I can’t talk to him, or made me feel bad about how I feel, but he needs to get away from it sometimes and he thankfully he doesn’t have a chronic illness. Support groups do not work for me, those people get on my nerves. I have a therapist, but let’s face it, one hour a week is not always enough, and sometimes you don’t get that. (like when I’m so sick I can’t go, and soon she’s going to Thailand for 3 weeks…Ahhh! I am happy for her, she’s never done anything like this before. What a dream trip.) Oh, dang I’ve completely lost my train of thought. So anyway…I don’t want to talk, or maybe I don’t trust talking, I don’t think it’s doing much good, and I feel like I’m losing the few friends I have because of it. I have some new treatments coming up and as that happens I’ll post about them. I would love to know more about other people’s experiences with these treatments, so I’ll be sure to post mine. (I just started Aimovig for my migraines, I’m going to be trying ketamine (esketamine nasal spray) as soon as my insurance approves it for my depression, and I’m going to be going to a pain clinic for my neck pain caused by my migraines…or the neck pain contributing to my migraines…anyway…pain.) So there will be posts.
I’ve decided to try to start putting out more posts, but they will be posts that are about my chronic illnesses and not so much about just me. I will probably put in there how it relates to me personally. But I have soooo much going on right now there may not be a lot of posts coming out, but I’m going to give it the old college try. (where did that saying come from?)
Well, that’s what’s on my mind today. Plus a whole heck of a lot more, but most of that is a mess!
Before I go, I’d like for all of you to know that if you ever need someone to talk to I’ll listen. Well, not with my ears, but I’ll text, message, email…. There is a contact form right here on my blog just go up to the top and you’ll see the “About Me /Contact Me” tab…you can contact me right there and it will email me. Now, if you are someone who wants me to sell something on my blog, or do some strange post, or something like that…don’t waste your time. I’m really not into those things. But if you need a to talk, I’m here for you.
For over a year now I’ve been hit with one thing after another. Last Fall my bipolar medication stopped working and I basically had a psychotic break with the mania/rage going way out of control and battling a lot of medication side effects before we finally got that under control. Then I had a severe UTI that caused hydronephrosis in both kidneys, I had a cyst removed from my scalp that got horribly infected and I had a reaction to the antibiotics. In April the severe intractable migraine started and has continually gotten worse; over the last couple of months I’ve been having an escalation of cluster headaches, at least one a week. and now my antidepressants have stopped working. All this while we have been looking for a house, in the worse housing market I have ever seen, and we have to move from our rental by the end of November.
It is any wonder my brain has decided to check out?
In 2016 I started having seizures during an extremely stressful time of my life. It was determined they were psychogenic non-epileptic seizures. You can read more about that in this post: Psychogenic Non-Epileptic Seizures What Are They? Since that time I haven’t had many, only a few and only in times of great pain (like when I was in the ER for my migraine) or extreme stress (like after a vertigo attack that happened during the mania). Lately they have been coming regularly. It is increasing my pain levels dramatically. When I have a seizure it looks like a grand mal seizure. It starts with my right hand twitching, then the arm goes, and the whole right side twitches and curves back, my head draws back, my muscles are all tight and spasming. It is very painful, and my neck and shoulder on the right side still hurt so much. I feel tingly on that side, and I just feel so off. During the seizure I am mostly aware, but I can’t do anything. Sometimes I’m not as aware, sometimes I’m very confused when it’s over. I always cry when it’s over. I feel so exposed, vulnerable, scared, and unsafe.
Just a year ago I was doing so much better I bought a car. I was driving, cooking, shopping, painting, swimming…. I don’t understand what happened. I’m not asking “Why me?” or anything like that, I’m simply confused. I know we made a major move, but I was doing pretty good for the first few months we were here, so I really don’t think it was the stress of moving. But I guess one stress could possibly have snow balled into a bigger stress… into a bigger stress… into more illness…but who really knows. All this could have happened no matter what. It could have happened independently, but it just happened to happen one right after another I suppose.
Where does it leave me now?
Migraines – I’m still starting Aimovig on the 28th for my migraines, but I won’t know if it’s working for 3 months. I just finished a round of steroids hoping to get a break from the pain, it did lower the pain level, but they made me so sick I couldn’t enjoy it. (Oh boy was I sick, Meniere’s and steroids do not mesh well together, at least not with me). I may go to the pain clinic to get injections in my neck, I haven’t decided about that yet. Just a little scared about that one. Oh, the Migranal nasal spray is working as a rescue medication, thankfully. It doesn’t completely take it away, but it comes close, so I am having a little bit of relief twice a week. More than I was getting, but as I said, it doesn’t take it all away, it takes it from a 10 to a 7 or maybe, if I’m lucky a 6. Ah….a 6…but that is a rarity.
Mental Health – I started a new antidepressant, Trintellix, on Tuesday. I’m to try it for 2 weeks and if it doesn’t work we’re going to try Ketamine. I’ve tried everything else. This should be interesting. I’m working with both my psychiatrist and my psychologist about my seizures. I need to get my pain and stress under control. One step at a time. Just one moment at a time.
Home life – We’ll be moving into one of Stuart’s dad’s houses the beginning of November. The house Stuart grew up in. We aren’t sure if we’ll continue to look for a house to buy, or if we’ll stay there and renovate his house. The house is a bit further out than we planned to live, so we’re going to live there for a while to see how we like it. Kinda cool that we can do that. I’ve just been freaking out a little about not having a home, and needing to settle down. I’ve been feeling so lost and temporary ever since we moved from our house, six years ago, but it’s been so much worse since we moved here. When we moved here we basically got rid of everything. We have 2 chairs in our living room, and one is very uncomfortable. We have no dining room furniture. Our home is very sparse. We did not plan on renting for this long. It’s just so hard on me. This has just been so hard. I need stability. I NEED IT.
Right now I feel very alone, vulnerable, and scared. The only place I feel safe is in my husband’s arms. He literally saves my life every day. I told him that if it wasn’t for him I wouldn’t be here any more. So much pain, both physically and mentally…it’s just so much. And my amazing husband told me that he loves me so much, he never wants to lose me, but it also makes him feel guilty because he knows how much I’m suffering. I don’t know how I ended up with such an amazing man. He’ll never know how much it helps me to know he hears me.
I have so much, a wonderful husband, a roof over my head, nice clothes, good food, access to quality health care, support…. and yet I’m so unhappy. I’m so very sad. It hurts so much. My thoughts are consumed with pain. I find no enjoyment in anything. A friend posted a question on her blog asking if you found out you were going to die what would you regret not doing more of….and I could not answer that question. First I thought, not helping others more, getting more involved…. But then I tried to think of something I enjoyed that I would wish I had done more of, and I had nothing. There are things I used to love to do, but now…..not so much. My art…nope. Cooking…too much work. Taking pictures…can’t see it. I can think of nothing. All I do is sit and color by number. And that’s not for enjoyment, it’s to take my mind off of the pain…the migraine, the chronic daily headache, the back pain, the neck pain, the hip pain, the bladder pain, the pelvic pain…so much pain every day.
life is suffering. life is pain. life is ever changing. life is impermanence.
I’ve been trying to write a post for weeks now, but I just haven’t been able to get the words to come out. I had a CTA scan of my head and neck on July 26th, that’s a CT scan that shows your arteries. I had planned to post about it, to show you the awful bruise the contrast caused, and tell you how I freaked out when the contrast hit me, but I was actually ashamed that I felt that way. They had a hard time finding my veins, as usual, and I, once again, felt ashamed that I’m difficult. I had a bit of a reaction to the contrast and had a very debilitating migraine and nausea for days. I couldn’t write, I couldn’t do anything. Lorraine was nice enough to do a Mindfulness Monday. I’m ashamed I haven’t written since then.
I feel that I have needed to write and tell you how I’m still struggling with the migraines, how the medication isn’t working, and how I can’t accomplish anything really. But I’m ashamed that I’m not better. I’m ashamed that I keep trying different medications and they don’t work on me. I feel like I’m failing. In our culture we are expected to take a drug when we get sick and get better, if we don’t get better then we aren’t trying hard enough. We should change our diet, exercise more…. You see the stories all the time, how someone beat this or that disease by doing these things. We are expected to fight our illnesses and get better, when we don’t we often feel shame. Or at least, I know I do.
With my migraines everyone has a solution. So many people have or know someone with migraine, it isn’t rare, but chances are it’s episodic migraine not chronic migraine. I’m asked so often, “Do you take medication?” and it’s followed by, “I take (or so and so takes)______ and it works!” I want to scream, “Of course I take medication! I take preventatives, and abortives, and supplements, and I use alternative treatments! Nothing is working but I’m afraid to stop any of them for fear it will get worse!” But instead I feel ashamed that I’m defective. Not only do I have migraines, I have migraines that won’t respond to treatment.
Weekend before last we went out for breakfast with Stuart’s father at our usual place. I ordered a gluten free pancake, when it came I suspected it was wrong, but they have never gotten my order wrong before, so I took a bite. I knew immediately it was wrong. I was poisoned. I called the waitress over and asked and sure enough, it wasn’t gluten free. She apologized and I smiled and just ordered a new one. I looked at Stuart with huge eyes and he just said, there was nothing that could be done now. His father said, “it was only one bite” Stuart explained that it only takes a crumb. I should have told the waitress that I didn’t want anything else and told Stuart and his dad we needed to go home, but instead I was too ashamed. I ate that new pancake knowing that I would be sick within an hour or two. I sat there listening to them talk, while my head pounded, my stomach started to ache and get tight and my bowels started to rumble. I ended up having to rush to the bathroom there and it was obvious my stomach was distended by the time we left. I felt even more shame that I could not hide it.
I’ve never been one who is ashamed of my cochlear implants, I know a lot of people like to hide them, but I like for people to understand that I have hearing loss, because I do get ashamed when I have trouble understanding people. I sit and “listen” to conversations, but I often don’t “hear” them, and I’m too ashamed to keep asking for people to repeat what they say. After you are told over and over that it’s not important, you start to believe it, so I don’t worry about it. Then I get more ashamed when I miss things that I needed to hear.
Yesterday I had a very bad day. I woke in so much pain, but more than that when I’d stand I would see stars and I’d start to black out. I asked Stuart if he could work from home, but before he could answer I told him no, I’d be okay, because I was way too ashamed that I needed him. I was not safe, but I was too ashamed to admit that. Last night was the first time I told him how I felt. Now he is afraid he has done something to make me feel ashamed, and I feel shame that I’ve made him feel this way. I’ve explained to him that it’s complicated.
I’m just coming to terms with these feelings. I’ve tried to put a label on this before and called it guilt, but that wasn’t right, it’s shame. Guilt is feeling that you’ve done something bad. Shame is feeling that you are something bad. So, yes I feel guilty about asking him to work from home because I don’t want to take him away from work (doing something bad), but I also feel shame about it because I am ill and have to ask in the first place (am something bad).
Do you have these feelings? This will be a major discussion coming up with my therapist. Shame is not a healthy emotion, this is something we need to battle sooner rather than later.
The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?
It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.
Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.
The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.
Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!
I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.
Today’s Mindfulness Monday is not really quotes on mindfulness, they are mindful quotes on mental health. There are more quotes than usual, I actually found over 30 that I liked and finally cut it down to these 7. After each quote I will explain why I chose that particular quote. I hope you will bare with me, as most of you know I’m working through a mental health crisis of my own, and working on this post has helped me feel not so alone. ***Please note that this post contains a frank discussion on mental health issues including suicide ideation.
“Beautiful fake smile.
All it takes is a beautiful fake smile
to hide an injured soul and
they will never notice how broken you really are.”
I chose this quote because we I often use a fake smile to get through the day. Whether it be because of my physical or mental illnesses, that fake smile makes others believe I’m okay, and that makes dealing with the general public, and sometimes even those closest to me, easier. I don’t have to explain, I don’t have to deal with the awkwardness…..the fake smile, is a shield I use to deflect the judgments from others.
“Be proud of every step
you take towards stability,
no matter how big or small.”
I have been feeling like all the work I’ve been doing to overcome this crisis has shown little improvement. I chose this quote because it reminded me that even the smallest steps toward my stability are worth being proud of.
“I’m still me no matter
my mental health”
Earlier today I texted a friend how afraid I am that this is my new normal, all the anger, and simply being a bitch all the time. I’m no longer a nice person. I told her, “I feel like I’ve lost Wendy” I chose this quote simply because it reassured me that Wendy is still in there somewhere.
“It’s exhausting to fight a war
inside your head
every single day.”
If you don’t have a mental illness I don’t think you can ever understand this quote, if you do, I doubt I have to explain why I included it. This constant battle going on in my head is driving me insane….or perhaps I’m insane is why I have the battle in the first place….these are the kind of questions that bombard me all the time lately. Every… Single….Day
“Surviving a psychiatric crisis is one thing.
Overcoming one is something completely different.”
I hope to somehow understand this, and hopefully so will my husband. Right now we are in survival mode, overcoming it is going to be a long, hard process. (I’m not sure it will ever happen completely)
“The bravest thing I ever did
was continuing my life
when I wanted to die.”
Okay, I’m admitting something here so other’s my hear my pain, and will perhaps not feel so alone. Each day since this crisis began has been a fight for my life. More than once I’ve thought it would be best if I were not here. I’m not being selfish, of looking for the easy way out. I’m hurting the person I love most, over, and over, and over again. When I’m having the most severe emotions, rage, despair….and the psychosis (auditory hallucinations) I cannot see that removing myself from this world would hurt him worse, I can only see that I’m causing him so much pain, and at that moment I believe that if I’m wasn’t here it would be better for him…and others I love. I want to remove myself from the situation. Actually, that’s exactly it, I am simply trying my hardest to get away from the war inside me, I simply need to escape. The pain is just too great. Please do not judge me, if you do, keep it to yourself, my psyche can’t handle it right now. I am not in danger, my husband and my psychiatrist know about this and I’m being watched….like a child….I hate it.
”You know when you’re in a bad dream
and you’re trying to run, punch, kick, or scream,
and your body just won’t move?
You open your mouth and nothing comes out.
You feel frozen or in slow motion,
and no matter how hard you try to fight it,
That’s how it feels to battle mental illness.”
When I read this quote I thought….Yes!! It is often like that. I feel like I scream and scream and even when I’m making noise it makes no sense. I’m stuck, I can’t get out. I just want me back again! There are so many people who feel like they aren’t themselves after they start their psychiatric medication, especially those who are bipolar I, like me. I will admit, when I first started my meds I wondered if the changes in my moods were making me less….me. I was losing part of who I identified as me, but after I was stable for a while I realized that the real me was the stable person. I no longer had times of extreme mood swings, I no longer did so many dangerous things, I felt more in control. Yes, I missed being able to pain for days on end, I don’t feel I’ve been as creative, and I miss the times I could read 2-3 books in one day, but I don’t miss buying a car I couldn’t afford, or having sex with someone and not remembering it, or losing days that I don’t remember. That wasn’t me. When I’d relapse, which has never been as bad as this crisis, I’d run to my doctor immediately for help. I didn’t like that feeling at all, I was suddenly not me. And suddenly after 20+ years, I’m having a severe crisis. It scares the hell out of me. I will say, I think I’m better today than I was 2 weeks ago, but I still have a long way to go.
I just want to be Wendy again.
***by the way, the photo above is a self portrait I took a few years ago. I haven’t been in the mood to take many pictures lately, and I felt this photo was appropriate. (all right’s reserved)