For the first time since my diagnosis in 1996 I’ve felt that I’ve been treated completely differently because of my mental illness. Perhaps it was because I mostly stable for so long and my few people have ever seen me have an episode, but this came from my doctor.
Since we moved to Tucson 8 months ago I had to get a new PCP (Primary Care Physician), I initially wasn’t sure about her, she seemed a little too friendly, and one of the first things she said was that she wouldn’t write a prescription for diazipam. (I didn’t ask, I’d get that from my ENT anyway), but I gave her a chance. I admit I went in there not expecting much so I felt that’s what I got. The second visit was much better. Every time I’ve seen her she hugged me, until I told her about my mixed mania episode. Now things are different.
I saw her on Friday for back pain. I felt like she dismissed things I said. I tried to talk about the back pain and she asked what I wanted to do about it. I said, “fix it”. “How do you want to do that?” I jokingly said, “I want you to fix it.” and I laughted. She said, “I can’t do that”, in a very abrupt way. She immediately said she would refer me to PT. I tried to say that I wasn’t sure it was muscular, I was concerned it may be arthritis. “No. You need PT”. She normally talks well so I can understand and is friendly, on Friday I had to turn my cochlear implants DOWN because she was so LOUD. She didn’t even want to look at my back, when I said where it was, she said she thought it was my lower back….”well bitch if you had asked you’d know!”, I thought to myself. She touched me and said, “I expected it to be tighter”, in a much lower voice to my husband. I tried to tell her that it feels different, but she dismissed me. I needed to go to PT. Fine, I’ll go to PT and I’ll find a new PCP! (you’d think she thought I was seeking drugs but I’m allergic to opioids, and she knows that, so WTF? I just wanted a discussion and maybe an xray)
I may have made the grave mistake of telling her about my episode, but when my drug list started to change, that would be a pretty obvious clue things were changing. I also mentioned I had back pain as a side effect from akathesia due to a side effect form Latuda 2 years prior, I should not have said that…..WAIT!……………
What am I saying?? I should have been able to say all of that!! My general doctor should be able to be aware of my mental health issues and not start treating me like I’m not able to think for myself.
I will be firing her soon and I will make sure that she and the office know why I am doing so. This is crazy, I’m not!
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 walk around in a daze lately, and can’t see through the fog.
I feel like I’m lost in the dark and the only lights I see are from the flames of hell.
I can’t tell you why.
There is no real reason.
Sometimes I feel like I’m a pawn in someone else’s game. I can see two demons hunched over a game board, we are the pieces they move. We have no control over how the game is played; we can only hope they play fairly, but we all know that demons never play fair.
How can I feel so level headed and focused at one point and so out of control and totally depressed at the next. What changed?
Sometimes the answer is “nothing”. Other times, the answer is more complicated, but the thing is, it’s really not about what has happened on the outside, it’s all about what’s going on on the inside.
Right now I could actually write a huge list of things that have changed in my life, but none of them explain the extreme changes in my emotional state.
I’m not “letting things get to me”, nor am I “too sensitive”. I’m falling apart from the inside out, and it has nothing to do with anything I am doing to myself.
Damn! Does that sound as stupid to any of you as it does to me?
I get so pissed off when someone tells me that they wish I didn’t let things get to me so much, or that they wish I wasn’t so sensitive….yeah well…yadayadayada. I guess, it is all on me, isn’t it? But then again…is it? If it were up to me I sure wouldn’t allow things to “get to me”, and I wouldn’t be overly “sensitive”. Heck, if it were up to me I’d be pretty friggin’ stoic sometimes, but I’m not, I simply can’t be like that. I feel things, very deeply sometimes, I actually envy people who can “bury it” or “put walls up”, I can’t do that. I’ve tried, oh how I’ve tried. I really do envy those people…..sometimes…like now…not always.
Lately, all I want to do is eat, sleep, and cry. In reality I’m not sleeping enough, but I’m spending a lot of time trying to; I’m eating too much, the weight gain proves it, and I’m either crying or pissed most of the time! But I’m trying really, really hard not to be like that. Heck, I don’t even know why I’m crying, and I sure can’t tell you what I’m so mad about. Here’s the kicker, something will happen that doesn’t bother me at all and then the exact same thing can happen again and suddenly I’m so pissed I can’t think straight, or I’m crying so hard I can’t see. What changed there? So…is that all on me? or is it out of my control? More importantly, is this something that is just happening because of outside circumstances and will blow over, or does my medication need to be adjusted? Honestly, I have no clue. (I think it’s probably the later, or maybe a little bit of both?
Even with all I know about mental illness, (from my experiences with bipolar disorder, anxiety, and depression) I still feel like it’s my fault. I never feel like that about another person’s battles with mental illness, why do I hold myself to a different standard? Is it simply because I’m often told, “I wish you didn’t let things get to you so much”, or is it because I think this is a part of me that I should be able to control. I don’t have a lot in my life that I feel I have control over, surely I can control how I react to things. Isn’t that what I’ve been practicing mindfulness for? Simply accepting the way things are and not wishing it to be different. Well honey, I do wish it were different right now, but I am trying hard to accept that it just is the way it is, and I know for certain that things will change. Nothing stays the same, everything changes, I can always take solace in this, unless I’m deep in depression, then I think, “Yes, things change, it could get so much worse!” Aaahhhh….No! I can’t get caught in the future trap! You know that trap, the one in your mind that predicts a future…good or bad, watch out! it’s a trap! Chances are that the future you prophesied will not turn out the way your mind told you it would; staying in the present is the only way to really deal with life’s challenges, it’s it? I KNOW these things. Why then, is it so very hard?
I will try to take it moment by moment and be kind to myself.
I’ll try not to stay away.
I don’t want you to worry.
one moment at a time, I’ll get through this
*photo taken at Tumacacori National Park by W. Holcombe. Please do not use without permission. All rights reserved.
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.
This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”). I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics. If you’re interested: Akathisia by the RxISK Medical Team.
The turmoil I have experienced with akathisia has been unbelievable. The need to move has been overwhelming. I can’t express how intense this sensation has been, it was consuming every part of my life. You can read more about my experience with this side effect in my post “I can’t be still”.
I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia. I’m happy to say that I’m much, much better. I feel that sitting still is such a luxury.
Finally after a more than a month the restlessness is easing. I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move. My back is still very tense. The muscles have been tense for over a month, they simply do not want to settle. I’m in a quite a bit of pain because of it. I think I may need physical therapy to help calm it down. I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.
How about side effects with the new medication? After all, can an drug actually cause no side effects? I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function. That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking. I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly. Hopefully this is a side effect that gets better. If not, we may be on the search for a new antidepressant. sigh.
I promised this would be short, I’m keeping my promise.
I’m leaving you with a few articles about Akathisia that I found useful during all of this. I learned so much. I’m surprised I haven’t heard of this before.
During my last post I told how I planned to do some journal posts during the month of January. I planned on these being open and honest reviews of my days, then I realized I wasn’t totally honest while writing my last journal entry. I talked about the good things, the things I accomplished that day, but I glossed over the fact that I had a vertigo attack. I just slightly mentioned it, instead of saying how horrible it was. How it stopped me dead in my tracks. How I was stuck in a chair for over 2 hours not being able to focus on anything and being so upset that the day was ruined. (as you know now I decided to risk things and go out anyway, very unlike what I normally do, normally I stick very close to home after having a vertigo attack, but I was determined) During the attack I was scared. It is a very tough thing to deal with. After the attack, I’was exhausted and had to rest for a while before I could do anything else. Everything I did I pushed through. That doesn’t mean it wasn’t a good day, it did turn out to be a very good day. I simply glossed over the rough parts when I was journaling about it.
Well, day before yesterday was a good day. Yesterday I paid for it, but I couldn’t give in and just rest all day, I had my yearly physical I had to go to. I ached all over and just wanted to stay in bed all day, but I had to go to the doctor and have her poke me a bit and talk about my blood work. I hate going for my physical, often they find something else wrong, who wants to go find out something else is wrong? This time I didn’t find out anything else is wrong. Yay. My cholesterol is still high. The good cholesterol is in good shape, but the bad and total are not in good shape and my triglycerides are too high, as usual. We discussed my diet. First she told me that I’ve lost weight. SIX pounds! Woot! Yes I’m being sarcastic. She was trying to be supportive, but really, 6 pounds in a year, is not good. (She had no idea I’d been trying to lose around 40lbs the whole year.) So we discussed how I could get my weight down and my cholesterol in better shape. I have a friend who has been on the Ketogenic diet for a while, so I asked about that before she suggested anything and she said it was a good diet for what I need. She said it is good for people who have to be more sedentary. The Ketogenic diet is very low in carbs and high in fat. This is very different than I am used to eating. I don’t go crazy with carbs usually, so I don’t think that is going to be too big of an issue, however increasing the fat is going to be odd. It’s just so counterintuitive to what I’ve always done. As soon as I can wrap my head around this and all the sweets from the holidays are out of the house, I’ll start the diet. wish me luck.
Today I’m still achey. I’ve had a migraine all day. I had an appointment with my therapist this morning. That’s going well, I think. Some days I wonder why I’m spending so much money to just sit in there and talk, am I really that hard up for friends? By that I mean that on some days I feel like all we talk about is stuff you’d talk about with your girlfriend. Like, I found out who cuts her hair….now my hair finally has a good cut! But if I think about it, most everything we talk about comes around to something that could benefit me in the long run. So it’s all good.
On the way home today we stopped off to buy more yarn. Yes, I’m really enjoying my Knifty Knitter, so much so I think I’m going to finish my first scarf in a week….or less. I’m thrilled that when I’m all achey and feel cruddy I can still sit and “knit”. I feel productive. I’ve always wanted to make baby blankets for charity, now I might be able to do that. I’m looking into it.
Right now everything is taking much longer than it should. But that’s normal for me. Right now I’m going on 2 hours for writing this post, and I know it will go longer. I keep wording things wrong, can’t think of words, can’t spell, or I simply get stuck. At this moment I hurt too much to think and I don’t want to try any more….it’s just too hard.
It’s very unfortunate that cannibus is illegal in most states. I’ve used it to help me in the past, but it is illegal in my state. I’ve tried cannibus infused coconut oil to help with the pain and sleep, it is amazing for that. I’ve used it via a vape pen during a vertigo attack and it stopped me from throwing up and slowed the vertigo. What I wouldn’t give for it to be legal. I’m having a hard time recently with vertigo and pain, it just makes me think about this more and more.
I think that’s all for my journal entry today. I didn’t mention that I had a vertigo attack yesterday and a small one today, but if I mentioned every one we would be talking about vertigo a lot. However, I think I should mention it every time during these journal entries to bring attention to how often I really do have vertigo.
I hope everyone has a safe and happy New Years Eve celebration!!
Tomorrow in my mother’s birthday. It’s always a bittersweet day for me. I celebrate the day of her birth, but I’m sad she is no longer with us to celebrate. It’s always an emotional way to start the year.
On June 30th my father died. Yesterday was his birthday. I would have thought that I would be filled with sad emotions, instead I’ve been filled with a renewed lust for life. All we know really is life and death, I’m thinking that his death made me realize just how lucky I am to be alive. I may have a lot of hurdles to jump over every day, but I’m alive and I will thrive.
Often when you have a chronic illness life becomes so hard we don’t care to live any longer. I know I’ve been suicidal, more often I’ve simply felt that I didn’t want to wake up. I simply didn’t want to exist any more, it was just too hard. Since my father’s death, I’ve realized that I’ve been wasting what life I’ve been given. Yes, I’m sick and I can’t do a lot of things that a normal person can do, but there are a lot of things I can do, I just need to figure out my limits and live within those without wishing for things to be different. Wishing for everything to be different makes life miserable.
Losing a parent can make you reevaluate your life. For me it made me realize I haven’t been appreciating my life. I realize I want to live. I may not enjoy every moment of my life, my life may be hard, but it’s my life and I’m going to live it!
During this holiday season, I wish you all a life well lived.
**all images on Picnic With Ants created and owned by Wendy Holcombe unless otherwise noted.
Today’s #HAWMC prompt is: First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!
What drives me to write about my health? Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.
I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with. I’ve found support through my blog and I hope I give the same.
I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.
I also have other illnesses that I mention along the way. Like Degenerative Disc, Hypothyroidism and others. I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.
What drives me is my illnesses and my love for others. My compassion for others and myself. I write because it helps me and in turn I hope it helps others.
What do I want others to know about my conditions and activism?
Well there’s an awful lot to know about my conditions, as there is more than one condition to cover. I’ll pick just talk and see what comes out.
Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it. The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus. If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease. The progression of the disease can be different for different people. It is normally only in one ear, it can attack both ears. I have it in both ears. It used to be thought that the disease would “burn” itself out. As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo. As can be seen with me that is not necessarily the case. I am deaf now and still have vertigo often. There is not sign of a “burn out” for me. I do want everyone to know that this disease does not progress the same for everyone. just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will. I’m in a very small minority.
Bipolar Disorder – I want people to know that people aren’t crazy when they have this. Being Bipolar doesn’t stop me from living a normal life. I want people to know that not everyone is the same with this too. I am lucky. With medication and therapy I am doing very well, and have been for years. Others are not so lucky. Medication does not work for everyone. Everyone with this disorder has to work hard.
Chronic Migraines – I want people to know that migraines are not just a headache. They are so much more than that. They make you sick all over. Having a migraine for more days during the month than not can put a huge damper on life.
It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.
This is some of what I want you to know about me and my illnesses and why I write. I hope you will join me on this month long journey. Wish me luck that I can accomplish this goal of posting every day this month!