I feel shame (Shame and Chronic Illness)

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.

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Relief. The Importance of Keeping a Medication Diary

Tucson night sky

If you’ve been following my blog you know that I’ve been battling a severe migraine flare since April 20th, I’m so happy to share that I’m finally back to my baseline for my migraines and my rescue medications are once again working so I’m having sweet, sweet relief!! How did this come about? Well let me tell you, this was an ordeal! And it could probably have been sorted sooner if I had noticed something earlier, in the end, I’m glad I wrote about when I started new medications here.

One of the first things I did when all of this started was try to figure out if I anything had changed, had I started a new medication, was I eating differently, sleeping differently….anything? Well I had started Emgality, a migraine preventative, but I started it a month before this started and I was insured that it would not cause migraines. I had also started Viibryd, an antidepressant, but I (thought) I started it in March. Finally after my hospital stay in June, I went through my blog posts and found this post on April 27th that said I started an antidepressant the week before. https://picnicwithants.com/2019/04/27/little-update-from-travels-to-depression/ That was the week the intractable migraine started. The post also talks about how much better my migraines were in March after I started Emgality on February 28th. Ding! Ding! Ding! Could it be that this drug was contributing to this migraine flare? I was going to find out! I looked up the side effects for Viibryd and sure enough, one of the common side effects is “headache” (15%) and one of the lesser side effects is “migraine”. I put a call in to my psychiatrist and a message in to my migraine doctor. Wouldn’t you know it, my psychiatrist was out of the country! Ha! Glad to know my doctors had a good time traveling this summer! So, everyone knows what I did with my migraine doctor, if you missed it, you can check out my post on SPG Blocks here, but keep in mind that I was still on the Viibryd at the time. I got a message from my psychiatrist PA and they said that migraine wasn’t a side effect of Viibryd (Can you see me rolling my eyes?? I read the prescribing information handout that comes from the manufacturer, where did she get her information?) In the call I’d also asked about a couple of other antidepressants that are used at migraine preventatives to see what they thought, I was told that they didn’t go with Viibryd. Umm, I’m not going to stay on Viibryd! But she couldn’t seem to understand that. I can’t say it is all her fault, the front office there is awful! I love my psychiatrist, but it is horrible to try to get messages through, so I decided to slowly taper off of it by myself, and just wait for my appointment which is next week to discuss the rest. And guess what?! After being totally off Viibryd for about a week my migraines dropped to about my baseline, or below.

Since my birthday, I’ve taken a rescue medication once! Don’t get me wrong, I have had more than one migraine, but they haven’t been severe and I haven’t felt the need to take medication for them. At the first sign of a migraine I’ve been taking 500mg of Ginger and it has been helping (this is a great article about the efficacy of ginger in helping migraines). As I’ve mentioned before, I can’t take rescue meds more than 2 days a week, so unless a migraine is bad I normally don’t take it since I often have migraines an average of 5 – 6 days a week. I save those 2 days for days I have something planned, or days when it is very severe.

I just noticed that today is the 15th and I haven’t taken migraine meds since the 5th! Wow! Perhaps the Emgality is doing something too? I’m really thinking that the Viibryd was messing me up big time. And so far I haven’t noticed my moods dropping since I’ve been off of it. You know, I’ve been fighting a migraine today, but I think I’m going to take something for it. This is great! Maybe I won’t have to save my medication for worse days? Do I dare hope?

To close I’d just like to say that this has taught me to always mark on my calendar when I start and stop medications, and pay close attention to how my body changes. I really thought I was on top of these things, but obviously it can slip by you, especially during busy times and times of high stress. If I had been able to put together that this had been a side effect earlier I might not have suffered for so long.

This, That, and The Other

In just 8 days since I started writing these journal posts I’ve made some observations. The antidepressant is working, and I’m very glad I took the chance and tried it. I’m in a much better place mentally. On the other hand, I do not see a great improvement from the Emgality, I hope I’m wrong, but as of right now my migraines aren’t better and I’m having an increase in vestibular migraines. Finally, I can see that I get a lot more done than I thought I did, and by paying attention to what I’m doing encourages me to do even more. I may not continue to write these journal entries publicly, (let’s face it, who really wants to read my day to day activites?) but I think I will continue to keep a private journal, I can really see how useful it can be.

More thoughts about my migraines I’ve noticed over the past month or so I wake up with relatively no pain, this has changed since starting Emgality, I used to wake up with a migraine almost every day; however, within a couple of hours a migraine will normally start. There were a few days last month that this didn’t happen, but for the most part, I could set my watch to it. This past week I’ve had 3 vestibular migraines, (a vestibular migraine causes dizziness and vertigo with or without pain) each one has been accompanied with severe pain and confusion. These are not new, but they do seem to be coming more often, and are more intense. Things to talk about with my doctor.

Cactus Flowering Tucson, AZ W. Holcombe

Yesterday I finally spent some time outside. I have 3 types of exercises from my new therapist, breathing, hip stability, and functional. While I was outside I laid down by the pool and focused on my breathing exercises. It was so nice, I finally felt things said I should feel! Exciting! I got all of my exercises done, not all at once, but I got them all done. So, I didn’t get a whole heck of a lot done yesterday, but I accomplished exactly what I wanted to, I went outside, and I did my exercises. The rest of the day I didn’t feel well and didn’t feel like doing much of anything, then right before I fell asleep I had a migraine hit that was excruciating. I thought a cluster was starting it was so intense, but it didn’t quite hit that magnitude. However, the pain was behind my eye and in my temple, my eye watered and right nostril ran, just like when I have a cluster. I had to move because the pain was so intense. So, I’m not positive it was not a cluster, but if it was, it wasn’t quite as painful as ones I’ve had in the past; not to say this was not severely painful. (for me a cluster is the greatest pain I can imagine, the pain I had last night would have sent me to the ER if it had lasted longer, but it was not the worst pain imaginable.)

Quick rundown of today. I ate breakfast outside. I took a bath and washed my hair. (this is a big task for me) I had a dentist appointment (check up, cleaning, fixed a small chip in a filling, and a fluoride treatment), went to Trader Joe’s, had dinner at the table with my husband, made “brownies” (hopefully I’ll sleep better tonight), and watched old Dr. Who’s for a bit. I did have a migraine that started shortly after breakfast but it didn’t get above a 6 all day so I was able to function. I used my functional exercises while making brownies and my back hurt less, but it did start to hurt more after I finished. I’m just thrilled I was able to get them all mixed up and in the pan without being in intense pain. Today was a FULL DAY! Tomorrow is an early day, so I’m going to bed.

Short day

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?

Kiki

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.

Mini me update

Daffodil – Charlotte, NC
Wild Mexican Poppy – Tucson, AZ

I’m Still Here I didn’t mean to scare anyone with my last post, no I’m not closing my blog, I have just been feeling a little low lately and it’s been hard to put words together and write coherently. A little depression has gotten hold of me, but I’m coming out of it. I tried looking at everyone’s blogs today but my reader is not working right. I’ve been terribly homesick, I have a friend back home who has been extremely ill for months now and I can’t be there with her and it’s breaking my heart. I can only hope that my virtual support is helping a little. My sister hurt her knee pretty bad, I’d like to be there for her, but alas I can’t. I’m kinda sure that she wouldn’t allow anyone to take care of her, but I’d sure like to try. She’s taken care of me time and time again, it’s time for me to be the carer. And I really miss Spring in the Carolinas. Spring in the desert is beautiful in it’s own way, but it’s not like it is in the Southeast. There isn’t this sudden explosion of life everywhere! You open your door and flowers have bloomed overnight. Trees are suddenly green. It’s magical. I didn’t think I’d miss it so much, but I do. Stuart says he will miss the fall, so we have decided to go to Charleston, SC for our anniversary this year in September. Hopefully he can see a little bit of Fall weather, and we can see people we love. Looking forward to that makes me a bit less homesick and I think it helps my depression.

The Move and Service Dog About us moving…no we aren’t moving far away, we are still going to be in Tucson. This is just an inconvenience, but how we were told about it really pissed me off. Right now we are renting a house that we didn’t expect to be renting but a few months until we found a house to buy, but it ended up that we needed to wait a few months before we could commit to buying a house. We can start looking again in June…or July, I don’t remember which. Our landlord has been working on the guest house and told us he did not expect to have it completed by the time we would need to move. On Friday I was standing out by the pool talking with him for a long time about us going to meet with a dog breeder about getting a dog to train for my service dog, this has been in the works for a long time and he knew all about it, he has been excited for me. Nothing was mentioned about the possibility of then wanting to sell the house soon, or us having to move. That evening our utility bill was left on our door with a note on the envelope that said our lease ends April 30th and the guest house should be finished by then, so we need to discuss options. My stress meter jumped WAY HIGH! The thought of moving again and then having to move again a few months after that, simply threw me for a loop. I don’t blame them, it is a financial decision, not an emotional one, but it sure leaves us in a lurch. There is a possibility that we won’t have to move. They need to do some work on the house that may go into the summer, and they believe that if they don’t sell during the summer they will miss their window for the best profit because it has a pool. People don’t like to buy houses that have pools in the winter….weird. We will know in about a week, if we do have to move we’ll have at least a month to move. We will then have movers move our stuff to a storage locker and move into furnished corporate housing for a few months, that way it’s really only one move. We’d just just have our clothes and stuff, everything else would be packed and ready to go. After we came to that decision the stress was totally lifted. We decided to wait on getting a puppy right now to train, hopefully we can get one this winter. I’m still looking for just the right dog for me. I will be training my dog through HandiDogs here in Tucson, AZ. They are a hands on training facility helping you to train your own service dog. I will have a hearing and balance dog. I will talk more and more about this experience as it happens.

Migraine Specialist I saw a new neurologist who specializes in headaches. She was wonderful. She had read all of my chart before meeting me, she asked all kinds of questions that I can’t remember being asked before. Like “does sleep make your migraines go away?” I’ve had it suggested to me to try sleeping when I have a migraine, but no one has ever asked me if it worked. It doesn’t. I wonder what that means. She asked if I ever get a migraine when having a bowel movement. Sometimes. So many questions!! At the end of all the questions and realizing that I’ve tried everything out there and still have over 25 migraines a month we decided to try one of the new CGRP blocker migraine preventative medications. I chose Emgality because it has been shown to help cluster headaches too, but it is not approved by the FDA for that use yet. This medication comes in an injection that I give to myself with an autoinjector. I had the first dose on Friday, March 29th. I will write a post soon explaining more about what this medication is and my experiences with it. Please wish me luck with it. My doctor told me that her story is much like mine. I not only have chronic migraines, I have a constant daily headache that I’ve had since I was 11 years old, the day I first started my period I got a headache that never went away. My doctor told me that with this new medication she still gets migraines, she gets much fewer migraines, but she does get some. However, she no longer has her daily headache. At that moment I burst into tears. I was so thrilled for her, and the thought of not having pain every day constantly, I simply cannot fathom that.

On a completely different note, I’m getting my hair cut on Saturday. You may not recognize me. I have long naturally wavy, slightly curly hair, but it’s fine. It used to be thick until I went through menopause, sigh. The length is doing nothing for me. I wear it in a ponytail most of the time. So I’m getting it cut! Not sure exactly how short yet, I’m going to need advice from my stylist, but I think it’s going to be pretty short. I’m getting new glasses soon too, I’m just going to look so different. A new me.

Well, I’m up late because I’m fighting a gastritis attack, again. I finally ate some real food today for the first day in a week, and now I’m so nauseous I can’t sleep. I’m off to take a Phenergan and try to rest.

“Change is the only constant.” ~Heraclitus

Starting to Deal with My Anxiety

I’m in the infancy of dealing with my anxiety and I thought I’d share some of the things I’m working on with my therapist. There are a number of things I’m starting to implement but the very first thing I’m to do is to understand that it’s perfectly alright for me to avoid things that cause me increased anxiety. In the future I will push myself to do things that are uncomfortable, but, right now, I’m going to just back away and take a breather from things that make me the most anxious.

Next is to make sure I’m taking care of myself, eating well, exercising when I can (something that can be a challenge for someone with chronic illnesses, but something that can help a lot I’ve found.), keeping up physical hygiene and getting enough sleep. Sleep is so important that my psychiatrist prescribed something to help for days when I simply can’t fall asleep. I used to sleep 8 – 9 hours a night without aid before the mixed mania episode now I barely make it 4 without help. I had 2 nights last week where I slept almost 7 hours without any help, that’s a great improvement, now if I can just have more nights like that.

My therapist suggested I do deep breathing exercises during times of high anxiety and have reassuring phrases prepared to tell myself.

BREATHE…IN 1 – 2 – 3 – 4….HOLD…OUT 1 – 2 – 3 – 4

IS MY BODY CALM? REPEAT AS NECESSARY

I WILL GET THROUGH THIS.

I AM GOING TO BE OKAY.

THIS WILL PASS.

I have another grounding technique that I got from a friend that I find helpful but it is a bit challenging for me, because it’s based on the 5 senses, so I do it a little differently but I think it works just as well.

You do this grounding technique by taking stock of all your 5 senses. If you can, try to say this aloud as you are processing it, if not, that’s okay too.

5 – See – What are 5 things you see around you right now? I see my computer, my water bottle, my walker, the fireplace, the rug.

4 – Touch – What are 4 things you could touch or feel right now? I can feel the water droplets on my bottle, I can feel the softness of my blanket, I can feel the ribbing on my sweater, I can feel my hair

3 – Hear – What are 3 things you can hear? (okay for me this one is different, if I can’t hear 3 things I list things that could make noise, or noises I’ve heard that I like….) Right now I hear a whistling in my tinnitus. I hear the TV is on. I can imagine there is traffic making noise outside.

2 – Smell – What are 2 things you can smell? I can smell….well not much I have a cold..hahaha…but if I didn’t I could smell my tea, I could smell my dog.

1 – Taste – What is 1 thing you can taste? I can taste my tea.

I’m doing this exercise at least once a day just to become aware of my surroundings and to make sure when I do it when I’m anxious I’ll be able to just easily fall into it and not be freaked out trying to figure out what I was supposed to do. I did that once and it freaked me out worse.

I keep a card in my purse and one in my side table at home that list this grounding technique, I admit I can never remember what comes first and then I get all anxious so it just negates the purpose. On the other side of that card I have the breathing techniques and affirmations written to remind me, because when I’m having a panic attack nothing much is really getting through this noggin’ of mine.

I’m also working on trying to be more mindful. As anyone who reads my blog knows I have focused on mindfulness for a long time, but for some reason when things started to get worse my mindfulness practice started to stray. The senses grounding technique is also a mindfulness technique that’s a good start. I’m also trying to consciously take at least 5 minutes a day to be very mindful aware…. non-judgmentally.

So that’s what I’m doing right now. As I go through this journey I’ll share more with you. I know that my hearing loss and other things in life are causing me to have a lot of anxiety at the present, but I’m not giving up. I also know that it’s not just my hearing loss. Before we moved to Tucson I was starting to really deal with my hearing loss anxiety, I was starting to get out there and push myself. I went to a couple of Christmas parties, and made some friends. I got involved in the Hearing Loss Association. I was driving again, for short distances (the traffic in Charlotte was crazy), but once we moved here my physical health took a turn, and so did my mental health, not to mention the stress of the move itself. I feel like all the strides I took are gone, but I know I can do it, I have. As a friend said to me, “We can get far going one step at a time.”

My Doctor Treats Me Different – Mental Health Stigma

image by pixabay.com

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!

Mindful Monday – Mental Illness

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.”

~Robin Williams

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.”

~Jessica AnnHardy

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”

~Niki McBain

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.”

~Mickie Ann

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.”

~Chris Curry

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.”

~Juliette Lewis

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,

nothing changes.

That’s how it feels to battle mental illness.”

~Evyenia

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 don’t mean to….(fighting depression)

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I don’t mean to stay away.

I don’t mean to make you worry.

I walk around in a daze lately, and can’t see through the fog.

I feel like I’m lost in the dark and the only lights I see are from the flames of hell.

I can’t tell  you why.

There is no real reason.

Sometimes I feel like I’m a pawn in someone else’s game.  I can see two demons hunched over a game board, we are the pieces they move.  We have no control over how the game is played; we can only hope they play fairly, but we all know that demons never play fair.

How can I feel so level headed and focused at one point and so out of control and totally depressed at the next.  What changed?

Sometimes the answer is “nothing”.  Other times, the answer is more complicated, but the thing is, it’s really not about what has happened on the outside, it’s all about what’s going on on the inside.

Right now I could actually write a huge list of things that have changed in my life, but none of them explain the extreme changes in my emotional state.

I’m not “letting things get to me”, nor am I “too sensitive”.  I’m falling apart from the inside out, and it has nothing to do with anything I am doing to myself.

Damn! Does that sound as stupid to any of you as it does to me?

I get so pissed off when someone tells me that they wish I didn’t let things get to me so much, or that they wish I wasn’t so sensitive….yeah well…yadayadayada.  I guess, it is all on me, isn’t it?  But then again…is it?  If it were up to me I sure wouldn’t allow things to “get to me”, and I wouldn’t be overly “sensitive”.  Heck, if it were up to me I’d be pretty friggin’ stoic sometimes, but I’m not, I simply can’t be like that.  I feel things, very deeply sometimes, I actually envy people who can “bury it” or “put walls up”, I can’t do that.  I’ve tried, oh how I’ve tried.  I really do envy those people…..sometimes…like now…not always.

Lately, all I want to do is eat, sleep, and cry.   In reality I’m not sleeping enough, but I’m spending a lot of time trying to; I’m eating too much, the weight gain proves it, and I’m either crying or pissed most of the time!  But I’m trying really, really hard not to be like that.  Heck, I don’t even know why I’m crying, and I sure can’t tell you what I’m so mad about.  Here’s the kicker, something will happen that doesn’t bother me at all and then the exact same thing can happen again and suddenly I’m so pissed I can’t think straight, or I’m crying so hard I can’t see.  What changed there?  So…is that all on me?  or is it out of my control?   More importantly, is this something that is just happening because of outside circumstances and will blow over, or does my medication need to be adjusted?  Honestly, I have no clue.  (I think it’s probably the later, or maybe a little bit of both?

Even with all I know about mental illness, (from my experiences with bipolar disorder, anxiety, and depression) I still feel like it’s my fault.  I never feel like that about another person’s battles with mental illness, why do I hold myself to a different standard?  Is it simply because I’m often told, “I wish you didn’t let things get to you so much”, or is it because I think this is a part of me that I should be able to control.  I don’t have a lot in my life that I feel I have control over, surely I can control how I react to things.  Isn’t that what I’ve been practicing mindfulness for?  Simply accepting the way things are and not wishing it to be different.  Well honey, I do wish it were different right now, but I am trying hard to accept that it just is the way it is, and I know for certain that things will change.  Nothing stays the same, everything changes, I can always take solace in this, unless I’m deep in depression, then I think, “Yes, things change, it could get so much worse!”  Aaahhhh….No!  I can’t get caught in the future trap!  You know that trap, the one in your mind that predicts a future…good or bad, watch out! it’s a trap!  Chances are that the future you prophesied will not turn out the way your mind told you it would; staying in the present is the only way to really deal with life’s challenges, it’s it?  I KNOW these things.  Why then, is it so very hard?

I will try to take it moment by moment and be kind to myself.

I’ll try not to stay away.

I don’t want you to worry.

 

one moment at a time, I’ll get through this

 

*photo taken at Tumacacori National Park by W. Holcombe.  Please do not use without permission.  All rights reserved.

I want to be a better friend to those who are in pain.

 

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*Content warning: This post discusses suicide and depression.

A friend of mine shared this on Facebook and I had to share it with you.

Why “I love you” and “Please reach out” are the crappiest things to post after someone has died by suicide – by Deanna Zandt

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.

I also read another article I found interesting: Depression and Suicide: Being mindful and accepting of the pain of the dark days – by Jack C. Surguy M.A. 

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.