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)
I have been one of those people with good intentions who have simply said the wrong things, and for that, I’m deeply sorry. I have been there, yet I still don’t know what to say when a friend is in their darkest moments. I need to always remember, I didn’t want to die because I didn’t feel loved, I simply wanted the pain to stop. It helped me to have someone sit with me, hold my hand, and simply be a witness to my pain. It helped me to know that they would help if they could, but that they didn’t try to force this false help on me. I know these things, but it’s very hard to do these things for someone from afar. I can’t simply sit with someone when they are in pain if I can’t be physically with them. Often, when I reach out to someone through texts, or messages, I don’t know what to say after that initial contact. Silence is unacceptable when you are texting. I want them to know that I care, and I simply want to be there for them. I know I can’t fix it, but that doesn’t mean I don’t want to.
Jack Surguy mentions something that I found helpful for me; by accepting that everything changes I can take solace in knowing that these feelings will not last forever. (even if they feel like they will) When I’m am suffering I know that it will end, that is actually my mantra when my emotions are all out of wack, “this will end”. I guess it’s a variation on “this too shall pass”, but that sounds trite to me for some reason. I promise no matter what you are going through right now, good, bad or indifferent, it will change.
I hope you find both of these articles interesting and possibly helpful.
Right now my wrist is killing me, so I need to stop typing, but after the deaths of Anthony Bourdain and Kate Spade, I felt I needed to talk about this, I want to do better. I want my friends (you) to know I love them, that I care, and that I respect their pain. I want them to know this every day, not just times like these.
* photo by W. Holcombe. A red yucca plant viewed while lying down looking at the sky. I found it stunning.
Greetings! I am filling in for Wendy this Monday, and as it is my birthday, I thought I would use quotes about gifts. Not just the tangible, wrapped in fancy paper with ribbon and bow. But the intangible, the ephemeral, the ethereal gifts we can give ourselves every day.
“This life is your gift to yourself…Open it!” (anon)
“The greatest gift you can give yourself is a little bit of your own attention.” (Anthony J. D’Angelo)
“Every day, once a day, give yourself a present. Don’t plan it. Don’t wait for it. Just let it happen.” (Agent Dale Cooper, Twin Peaks)
image: Lorraine 2017. Please don’t use without permission. Thanks.
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!
“Sometimes people hunger for more than bread.
It is possible that
our children, or husband, our wife,
do not hunger for bread,
do not need clothes,
do not lack a house.
But are we equally sure that
none of them feels alone,
needing some affection?
That too is poverty.”
~ Mother Teresa
“Even if others abandon you
You must never abandon yourself.”
I want to tell you a little about something that is going on with me. This is very difficult to talk about. Admitting this is happening to me is difficult. Talking about it is difficult. It shouldn’t be this difficult, but it is.
You may remember back in February I was hospitalized for having seizures and it was then determined that I do not have epilepsy. It was thought that a medication I was on may have caused the seizures but that isn’t the case, I’ve had more seizures since being off the medication. (some people prefer to call these seizures events or episodes instead of seizures since the brain is not firing like it does during a true seizure.) I do not have them regularly, and I haven’t had many, but I do still have them.
“A seizure is a temporary loss of control, often with abnormal movements, unconsciousness, or both. Epileptic seizures are caused by sudden abnormal electrical discharges in the brain. Psychogenic (non-epileptic) seizures are attacks that look like epileptic seizures, but are not caused by abnormal electrical discharges. They are stress-related or “emotional.” They are sometimes called pseudoseizures, but “psychogenic non-epileptic seizures” (PNES) is now the preferred term.” -1
The type of seizures I get are psychogenic non-epileptic seizures (PNES). By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder called a conversion disorder.-1 “For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.”(Kelley)-1
Since many people with epilepsy have normal reading with an EEG, PNES is diagnosed by an EEG with video monitoring which has to be read by a specialist in epilepsy. Diagnosis this way is nearly 100% accurate. There are about 10% of patients with epilepsy who also have PNES.
“PNES, unlike epileptic seizures, are not the result of a physical brain disease. Rather, they are emotional, stress-induced, and result from traumatic psychological experiences, sometimes from the forgotten past. It is well known that emotional or psychological stresses can produce physical reactions in people with no physical illness. For example, everyone has blushed in embarrassment or been nervous and anxious as part of a “stage fright” reaction. Today, we also know that more extreme emotional stresses can actually cause physical illnesses.”-1
As my psychiatrist said, my brain just gets to the point where it decides it can’t handle any more and says screw it. I’m seeing a psychiatrist for medication to help with anxiety and my normal bipolar stuff, and whatever else comes up. I’m seeing a psychologist for therapy to try to figure out what is causing this. I’m not going to discuss what is causing my seizures because frankly we aren’t exactly sure yet.
Today I wanted to make people aware that psychogenic non-epileptic seizures are real. People cannot control them. People often refuse to accept the diagnosis because of the stigma related to it. Family and often physicians do not understand that the patient cannot control what is happening to them. I wanted you to know that you know someone who is going through this, and I have no control over it. I also wanted people to know they are not as rare as you may think, “in the general population the prevalence rate is 2-33 per 100, 000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia”.-2
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.