Do you ever pour your heart out into a post and never post it? Just save it to a draft and stuff the feelings down? I do.
Nothing has changed in 23 years. Back then I was the disruption to my husband’s family. I was the one ruining it. I was told time and time again. At one point fairly early into our relationship, sometime after we were engaged but nowhere near our wedding, I tried to end it. If I was ruining his life I wanted to fix it… In the parking lot of a grocery store, I tried to end things and give him back the ring. I’ve never seen him more sad, and more hurt. He made me promise to never do that again. He assured me I wasn’t ruining their family.
If you looked at highlight reels from 1995 to 2018 you would see all the times I was a disruption, not good enough, not good enough wife, not good enough hostess, not a good enough mother to stop autism, ADHD, anxiety, bipolar in my kids…. the list goes on. But tonight my husband was told “mental illness is a ‘disruption'” specifically my mental illness. And I should be better now.
What? Like it’s that easy? I snap my fingers and I’m cured! But I don’t, so I must like being like this. Like not wanting to ever leave the house, like sleeping all day, like being stuck in OCD loops and feeling out of control. I must like being so sick of germs I’m afraid to hug my kids, or let them sit with me in my chair. Yes I enjoy it all… could you all feel the sarcasm dripping there?
It’s always been about this person, it will always be about this person and I will never measure up. This person has always known just where to sucker punch me.
Despite my best efforts to keep up with the blogs I follow, I haven’t been very good at it. There are days I am barely good at getting out of bed. Please forgive me, and know I am reading as often as I can, and you are all in my thoughts and prayers.
I started a post last night about why I haven’t written much lately, but it isn’t so much that I haven’t written lately, it’s not writer’s block- it’s life block. I am barely living my life. I am not someone I have ever been, or ever dreamed I would be. Part of me wants to be curled up in bed, or watching TV or reading. And part of me looks at that part of me with disgust.
That part of me, looks at me and how I am living my life right now and wants to scream “wake the hell up”. You have two wonderful children- yes they have issues, but they are amazing human beings. Stop yelling at them for making messes, for wanting to play with slime, for being a typical teenager with earbuds in. You have an amazing husband who stands by you no matter what. He’s picked up the cooking when you dropped it, he doesn’t feel well either and yet he humor’s your breakdown. He listens to every bit of whining you do about your past, or how you look, or how much this isn’t the life you dreamed of. This isn’t the life he dreamed of either. He didn’t expect to be unable to work at 38 years old. He didn’t expect to have to depend on the “system”, he expected to follow in his father’s and grandfather’s footsteps, and work hard all his life, to come home and be a jack of all trades, to be able to take vacations, and be able to do things he wanted to do. That part of me, looks at me with disgust and disappointment. Thinks I am selfish. Hates me. That part of me knows I am a disappointment to my family, that I have never done anything or accomplished anything.
And that part of me? Hates all of me. Hates itself for not being stronger, for not being able to “snap out of it”.
I want so badly to wake up tomorrow and to smile, to be thankful for another day, to get up and make breakfast, happily get my kids ready for school, or better yet still be homeschooling them, to cook my husband a good meal at dinner time. To be the fun mom that makes slime, that let’s them cook in the kitchen and make a mess. The mom who understands that her teenager pushing her away isn’t about her, that it’s about growth and independence.
But instead I am trapped in a prison of my own construct. No matter how much I WANT to snap out of it, I can’t. I have mental illness. It’s not laziness, it’s not weakness, it’s not selfishness. It’s just as real as a physical illness. I KNOW this is my logical mind. In the part of my mind that Mary Poppins would say my insight lives. But I can’t seem to accept any truth where I am not at fault for everything.
Another reason I haven’t written is that I just don’t seem to be able to muster up the energy most days. For some reason that is unfathomable to me, February was a crazy stupidly busy month. And what 2 years ago I would have scoffed at and completed with ease, makes me need a long nap. My counselor and I were talking today about the fact that I am just drained all the time, I am grumpy and irritable, I have no hobbies anymore – even the thought of taking out my knitting needles makes me tired. She told me about the “spoon theory”. She explained it that we have a certain number of spoons everyday, and as a person with my mental illness has fewer spoons that someone without it. So where someone without mental illness can get up at 6am, shower, get their kids off to school, make breakfast and maybe work out and only use a spoon, me just thinking about getting up out of bed to face another day uses a spoon. And showering uses a spoon or two. That by the end of the day I don’t have any spoons left. So true. The only reason I have the energy to write all this out today is that I took a nap already, and I am home alone. Hubby has taken little one to occupational therapy, and big one is still at school. No one needs me at the moment.
Last night I was laying in bed thinking about how hubby has to take little one to occupational therapy and maybe I should surprise him and make dinner. I want to do that so much, but just thinking about the work it will take makes me exhausted. I am going to try. Even though everything I cook lately comes out terribly, even though it will wear me out. Sometimes I think I don’t express enough gratitude for all the does for us. He is the unsung hero, here in the family, holding us up, when he himself can barely stand. So while he might not be able to work, he is providing something so much more important than financial support, he is carrying the weight of it all on him. I will never be able to pay him back for all he does. I just wish my family could see the tremendous amount he contributes to our lives. I wish they would look at him the way I look at him and see a hero.
Another week has passed and I haven’t had the….. motivation to write. It’s been a really long week. Monday was uneventful I think, I can’t even remember it. But Tuesday was horrific. Tuesday we had a snow day because of the impending weather- snow, ice, freezing rain…fun fun fun. I had an appointment to meet my new counselor, who I am already trying to come up with a name for… I also had a PT appointment, YES I am STILL in PT for my ankle sprains. So ridiculous how long this is taking to heal.
Anyway, my med doctor A.K.A. Mary Poppins had asked me to call on Monday with how I felt after her upping my Amitriptyline, at that point I had a 200mg bedtime dose and a 50mg dose in the A.M. I told her that I thought maybe I wasn’t quite so depressed, but I also couldn’t stay awake and that my heart rate was still through the roof (it was 129 at my last appointment with her). Her nurse called me on Tuesday AM and said Mary Poppins wants you to cut out my morning dose, and call my PCP about the heart rate, and to callback on Friday telling her how I felt. So I called my PCP and explained what was going on. They had me come in immediately. My resting pulse when I got there was 130 beats per minute. Then they did an EKG and they tell me that was normal except for the heart rate- and though I am not a doctor, they were comparing my EKG I had for surgery clearance a couple months ago to the one that day and to my non-doctor eyes thinks it looks much different but I have to trust they wouldn’t tell me it was fine when it wasn’t. The next step was blood work, CBC and complete metabolic panel. They called me Wednesday, blood work all came back fine- so it’s not an underlying illness causing this.
The next step is that I have to wear a cardiac halter for a couple days, they want to measure my heart activity day and night and see the trends. I go for that on Monday. Once those results come back? Who knows. Am I scared? Definitely. I have other symptoms, tightness in my chest, light headedness, breathlessness.
I let Mary Poppins know yesterday since I was in her office for something else yesterday, I also gave her a copy of my lab work. She told me to cut my nighttime 200mg dose down to 150mg and call Monday to tell her how I am feeling. I just took my pulse before I started writing this and it was 136- Just sitting here in my recliner. It’s concerning to me. They were trying to give me information but all they did was successfully make me even more anxious- they said the danger of my heart being this time all the time is that my heart muscle will wear our and I will be at increased risk for heart attack and stroke. Great! Tell the woman with severe anxiety that she might drop dead.
Needless to say I missed my appointment to meet my new counselor(way to make a first impression). Of course I called twice keeping them updated where I was at with my PCP. And I cancelled my PT for that day. The weather was horid and I didn’t feel much like going out again.
So what’s causing my heart to race like this? Well there are three possibilities- 1. a reaction to my amitriptyline. That would be a simple fix, stop that medication- however I have exhausted the search for a med that helps with the depression, this marginally did something, but we were working on upping the dose so it could help with the anxiety and hopefully kick this depression out. So it would stink to go off this medication. But hopefully Mary Poppins has more stuff in her never-ending bag. 2. Anxiety. This would be a simple and my preference. We can medicate the anxiety- I have been feeling anxous – no panicked- constantly, except that my heartt symptoms could be giving me a false sense that I am panicked. The 3rd option is my least favorite, that there is something wrong with my heart. THAT scares me, A LOT. Between this, and my oldest having a cold, my OCD is in overdrive. Yesterday hubby touched my hand when he was handing me something and I had to wash my hands…I stripped our bed, showered twice, I just couldn’t stop. It was a forceI couldn’t stop. I was panicked and jumpy all day. It was NOT fun.
I just took my pulse after I finished that paragraph it was 152. Sitting here, in my recliner typing and listening to Christian music. But I could feel a tightness in my chesst so I wanted to check it. And it was just as I feared- WAY too high. I hope we have answers soon.
And as if all of that wasn’t enough- hubby hurt his back AGAIN, his herniation still isn’t better, and he was walking our daughter home from school, he stepped in a hole and now his back hurts where it consistenly hurt, but now it also hurts higher up- he went for an MRI yesterday and we will see what the results of that are.
Our family just can’t seem to catch a break. We are definitely facing trials in all parts of our life, but we have faith God will hear our prayers and give us peace with it all, because God is good all the time, and all the time God is good.
Until next time….
Today is one of those days. You know the one, where you feel like nothing you do is right, where you feel humongous, and just all around unhappy?
Tonight as I sit here in my recliner, I feel so fat. I am the heaviest I have ever been in my entire life. That’s doing wonders for my self esteem. I hate myself. I am sick of being in my own skin. And yet, I don’t have the energy, or motivation to make even small changes. And because of injuries, I am not cleared to exercise. So yeah. I am a beached whale.
I do my best to avoid having to leave the house, between the germs of flu season, the possibility that I might see someone I know and have to do that song and dance of “hi, how are you?” “Fine, you?” When you really want to say, Im not fine, in fact life is pretty sucky right now.
I was lucky that last week I had an escape from reality with my brother, because without that I really don’t know how I would feel.
Tomorrow, I have to fire my therapist, I found one closer to home, and I never really liked the one I have- but I still have major anxiety. Im worried she will be upset with me. Thats my biggest fear with everyone pretty much. Comes from an abusive parent.
Then I have med management, get to tell her that my meds are doing diddly. I really don’t feel like I am getting better, ever since getting back from vaca I have been sad, mad, irritable, angry, or exhausted. I am sleeping like crap, unless I sleep during the day. I feel like I am back to the way I was a few months ago.
And finally I have to go to an IEP meeting for my son. He has been homeschooled the past 5 years, but before that he went to school in a different district, and we fought and fought for what he needed, and I am still freaking out about it even though it’s a different district, it’s giving me major PTSD trigger. The last time he was in public school it was a horror story. IEP violations, mediation, a formal complaint against the district (they were found guilty of 7 counts), attending an IEP meeting the day that I got out of the hospital from having my appendix and gall bladder out and the special education director screaming at me because we were disagreeing. After that, I took him out of school and homeschooled him for five years. This year AB (what I call after breakdown) I had to send them to school, I just couldn’t do it anymore. I was too irritable, too exhausted, too depressed. I hate that I made that decision. I hate that I couldn’t do what I wanted. Even though it’s been wonderful for my little one, she is thriving and has made so much progress. But big one, he’s suffering. And I already have ill will towards the current school. Big one’s case manager at school has done nothing to help him with this transition. He has dropped the ball in so many ways. My son’s therapist is so angry about the whole situation. He works at the school two days a week so he sees what’s going on there. I already feel like I am on the defensive. If I am honest, I don’t think we will “win”. They already lied to me at our first meeting when I said his diagnosis automatically qualifies him for an IEP, and they said that wasn’t true. I went through this with the last school, and finally brought a copy of the statute in with me and they admitted it was true. I don’t know what will happen if they don’t do anything. I don’t have the same fight in me I had 5 years ago. And what REALLY sucks, is even IF we get everything we are asking for, which is very reasonable, they have 45 SCHOOL days to implement it. That’s the end of March/beginning of April. Well woohoo they won’t HAVE to do anything until the IEP is written, meaning the year will be almost over. Whole lot of good that will do. I am sick of bureaucracy, and paper trails and documenting every single thing.
My dad is back in the hospital AGAIN, he is very cagy as to why he is there, probably to make me worry more. He calls me multiple times a day, sometimes sweet as pie, and sometimes raving and ranting about his medical care etc. Like tonight he kept me on the phone for an hour while he ranted on and on about how the people at dialysis avoid him like the plague, they get upset when he has to use the toilet while he’s being treated. But if you knew my dad, you would understand why they do that. One minute he is the most charming man you would ever meet and then he turns on you unexpectedly. He’s a narcissist, textbook case. I never know which dad I will get when I answer the phone.
And the icing on the cake? One of my closest friends seems to have dropped me. I don’t know if it’s because I am not homeschooling, or if it’s because she’s tired of me being depressed/anxious etc. When I message with her she is short, when I saw her today she barely said two words to me. She hasn’t said anything, it’s just a vibe I am getting. Hubby says it’s all in my head, that I only see the worst in everything, and while that’s true, I also know my friend. And I know I need to stop thinking about it, and obsessing about it, because there’s nothing I can do about it. And I do have a really good friend who loves me, no matter what, she is supermom. She is raising eight kids, homeschooling them, taking them to all their activities. She always seems so calm and chill. I want to be her when I grow up.
I know this was a downer of a post, but I can’t help it. I am literally sick to my stomach over all of this, and mostly tomorrow. I am having a hard time seeing past tomorrow, I am not sure how I will make it through the day.
If you read all this – thank you, and you’re amazing.
Until next time.
Today was ECT number 5. I don’t know if I feel any different – well that’s not true- I know that I have much higher anxiety, that I can’t remember hardly anything at all, big one came home talking about French class today and I couldn’t remember that he took French in school. That’s something that happened long before ECT so it’s obvious that ECT is effecting more than just the current memories I am making- or not making as the case may be.
I guess I can see some differences, but most of them have an explanation- like I haven’t been as irritable with the kids, but 1. I am too tired to be irritable, and 2. I just don’t have the energy to be irritated. It seems to me the those are symptoms of depression. I don’t know. I was telling my new counselor yesterday that I feel like a faucet was shut off. Not only do I feel numb much of the time, I am anxious and can’t remember anything.
But I am worried that I won’t know if/when the ECT is working. I was talking to the Psychiatrist today about how long I have had depression, and if I am being honest I have been depressed on and off most of my life, even as far back as childhood, so would I even know what feeling good feels like? And when my anxiety is elevated to this level (you know that feeling like before you have to give a big presentation? Or know you are in trouble? That pit in your stomach? I have that 24/7 lately. And my anxiety is always louder than my depression. In fact when I was first diagnosed depressed I didn’t believe the doctor, I thought I was just very very anxious with PTSD and OCD, but once I was finally getting my anxiety treated I saw the depression. And I can tell you right now my anxiety is as high if not higher than it was when I started getting treated for it. So it’s hard for me to see anything but that.
Well I guess that’s all, I am sure I had more to say but I can’t think of it, and my stomach is doing flip flops so I need to try to distract myself.
Until next time.