(Continued from the two and a half days’ worth of trying to write about this experience.)
And here I am almost 24 hours after I started trying to write this. It has taken that long to function enough to take care of a few things, but mostly all spent trying to manage symptoms. Thankfully I managed to get almost five hours of sleep now. I have discovered that I can only try to push myself to function for a tiny bit or else I actually cause my symptoms to worsen. With the bonus rebound of anxiety, paranoia, fear, and extreme emotions, plus the many comments in writing or in person of people telling me anecdotes about how somebody’s sister’s brother-in-law’s wife worked out really hard and now leads a productive life, all just circle like sharks, taking bites at these walls I have worked to build to prevent that type of thinking that basically tells me I’m unproductive and a failure, and if I just did whatever that person did then I would be a healthy, contributing member of society. During more rational moments like now, or when my anxiety and self esteem are more balanced, I work hard to try to eliminate that kind of thinking, because it just eats away at you, which ironically compounds the issues and makes it even harder to be healthier. If I push myself to try to cook dinner by myself, or keep up with an able-bodied person, then I’m setting myself up for some form of what is perceived as failure. What I then perceived as failure. I won’t have the energy or muscle strength to clean up after the meal, or I’ll get overheated while trying to move around and it literally makes me collapse on the floor, or then I’m too exhausted, which drains me mentally, so when Little Man wants to talk or have attention, I can’t be there for him. I can’t be the person that I want to be for him or for anyone else if I push and my body isn’t ready. I can try to share what I can, and love unconditionally, but I need to have the mental and physical energy, especially now that life includes these special gentlemen. It’s all ready mind-blowing that an 18 and an 11 year old are both capable of more empathy than most adults. They also are a lot more understanding than even I am about my having limits and remind me to be kinder to myself. It’s definitely hardest for the youngest when he has this enviable store of energy and nearly vibrates with it when he tries to be still, but the fact that he will try to block my path and ask me to please lay or sit down, while he instead takes care of whatever I try to do it, makes me tear up. When do we lose that compassion for another person? When do we start to believe another person’s contribution to life and society is quantifiable? Why do we hold ourselves and others to standards that we/they can’t meet? Especially when I’m shown that I make a positive impact whenever I can and in ways I often don’t realize. Why does that anecdote from someone who doesn’t see or understand what I am going through actually matter? So, as we decided to say, my train is in for repairs and will have a new locomotive once I am able again. 🙂
The other night there was a conversation on a show about how you’re supposed to put the oxygen mask on yourself first, and then help the person beside you, when a plane goes down, and I didn’t understand why it was so unsettling when I’ve heard it so many times before. Somehow the ping-pong game of trying to think right now resulted in my connecting the oxygen mask analogy to life and love, and how others love me when I don’t love myself. Yeah. I finally found the base of it all. That seriously sucks to realize it was the base of my doubts of my self worth. I was inadvertently guided into believing I am constantly lacking because I have never learned how to accept or love myself. And it’s difficult to acknowledge to others that a lot of it is born from the type of Faith that I was exposed to. I honestly want to erase that from even being written, but for some reason it feels like I need to put it out there, force myself to acknowledge it. I need to sift through the thoughts and beliefs in order to get to the base, to allow that foundation of love to be built, so I can truly live up to the potential of being the best that I can be. I can’t give unconditional love when I don’t love myself, when I’m focusing on what I didn’t do instead of that person’s needs, and constantly pick everything apart to see how I can “be” better for each person. Like putting on that oxygen mask first, I have the ability to then focus on what they need, instead of focusing on my betterment. All I can do is help and love as fully as I can when I do something. All thoughts should be about them. Otherwise it’s an oddly destructive thought process that is simultaneously narcissistic in focusing on what I can do better and yet still self-effacing or submissive. I learned to take being humble to an extreme that made it impossible to believe that I’m worthy of love or that I can ever do enough TO be worthy. And even when I’ve had some of the happiest moments in my life, I didn’t believe I had the right to be this happy. Somehow I tied having a disabling illness into it – deep down I believed I became sick because that’s what I deserve and all the difficult things are punishment for not being humble or productive enough. Ouch. That sucks as much as the Clonazepam withdrawals. That basis for thinking needs to be left behind as I work through the withdrawals. I want to come out of this in much better shape than when I started.
So there are some positive aspects to what I’m going through. I’m questioning almost everything now except for how I feel. I’ve learned that my own thoughts and feelings are often completely shoved below everyone else’s expressed, or perceived, expectations or beliefs, instead of allowing my own thoughts be the ruler to measure myself to. I can now get below those invasive thoughts and am sifting through the debris to find what I truly feel versus what is ingrained in me. I started the process a few years ago, but I was groomed to be a people pleaser and do all that I can in order to be “productive” and have a “positive impact”. I never could comprehend when someone said I have all ready had such a good impact on others that I need to quit worrying about it. It is ingrained in me to continually focus on what I can do for others and it built a very nasty trap for failure. I couldn’t truly believe that I’m “good” to anyone. Yet when I nearly passed out yesterday when trying to stand and Little Man started to fuss over me, I saw it. It took getting through another volley of symptom management, and some sleep, to clear my thinking and recognize what was at the edge of my thoughts. I saw that Little Man was nurturing me in the same way that I do him when he’s sick. It’s part of his love languages just like it is for me. And I’m worthy of this young man’s incredible love. And I’m worthy of his brother’s and father’s love as well. That self worth gets pretty skewed when you’re always focused on what you lack and need to improve in order to be “better”. It’s been hard for me to believe that I am worth the love and happiness my life has given me. I’m realistic enough to know that I’m going to struggle with this my whole life, but I finally truly heard and believed that I’m enough as I am, despite my limitations or “failures” when measured against someone else’s expectations. It must be hard to keep reassuring someone that you love them when they can’t believe that they’re worthy enough, though, so it’s this circle that can result in true loss unless there’s belief and trust in the feelings. If someone can love me, then I need to try my hardest to focus on the fact that they do, and not if I deserve it. It sounds like a simple concept, but it’s not. It’s the furthest thing from simple when your thoughts try to tear apart anything good to see what you should do better. I need to trust that I’m “enough” because I am loved and stop comparing myself to some ideal that I simply cannot be. I am loved. Not my capacity for possibly being better. Me. As I am. Flawed and disabled, and even when I feel like I’m on a water ride bouncing all over while really I’m just laying in bed during withdrawals. And during this incredibly difficult situation the love, concern, and care shown by others is such a gift. I know love. Where else do I have destructive behaviors and thoughts too? I feel like I always had trouble with those things, and having everything shaken up – the true possibility, yet again, of losing this life, has made me question everything except the things I know I truly feel and believe in. If an 11 YO can show me more compassion than I have shown myself most of my life, and especially through all of this, then I need to treat myself better. (Man does that pack a punch to reread. I’m trying to edit when I can since I know that right now I mess up words and don’t get things worded the way I want to. It’s hard to do when my hand and vision bounce all over, so I know I’ll have to come back after this is over. I’ll do my best for now between dictating and then some editing as I can.) If you have true insomnia the brain comes up with some twisted thoughts and can push you hard toward suicidal ideation or other forms of negative thoughts about giving up, so I’d strongly recommend if you are facing Clonazepam withdrawal, or any other anxiety disorder with insomnia, to please make sure you have unlimited access to professional help. You can get off the roller coaster and then night isn’t so endless. You can be helped if you find the right doctor/doctors. It isn’t as hopeless as it feels when it seems like the world is asleep and you suck so much you can’t even sleep like a “normal” person. The world wouldn’t be better, your loved ones wouldn’t have it easier, if you gave up. Get help please!
Last night I cried because I didn’t feel as if there would be anyone other than my little family that would even remember or miss me if I died due to the withdrawals. I knew the suicidal ideation, which the Clonazepam had quieted a lot, stemmed from a rough area deep inside, but I believed I was better, instead of realizing that the medication was masking it and I still needed to find the root of my deadly thoughts. I didn’t realize those urges were still in me deep down. I was supposed to be better because this medication was prescribed to do that. I didn’t know that it was going to be a lifelong treatment because the panic attacks and ideation would come back, since the core problem wasn’t figured out and worked on. The medication was supposed to only stop the anxiety and ideation, when it has actually damaged so much. But now we allll know. And in talking through that round of breaking down (because break downs have been happening rather regularly during withdrawals and I am overwhelmed), my husband said one of the most profound things to me. “I don’t want anyone to mourn me for long. I want them to be happy.” That made me admit for the first time, even to myself, let alone anyone else, that I didn’t believe or feel that I made enough of an impact to matter. I felt that it was pretty easy to just replace me, since someone as disabled and unproductive as me is very replaceable.
That’s why I felt that very few would ever miss me when I died. If I’m not worthy of love, then why should anyone ever mourn my passing? I want people to be happy, but I also never thought many would be overly upset about it. I can’t live up to some expectations and what I was taught I needed to be, so why should they care? Back we go for another spin on the roller coaster…I didn’t think I would be missed because I didn’t feel I was worthy of it. I hadn’t done or been “enough”. I’m starting to truly hear what I’ve been told and truly see how many people care. How many people feel I am worthy of their love. It’s hard to believe that when I was taught that feeling worthy is too prideful.
So in this relatively quiet time of thinking, while my vision makes the screen bob around and it takes hours to try to do something as straight forward as writing, I know that I want to continue to strive to have a good impact, but I have a long road ahead of me to recover from the withdrawals and to work on my belief system. The Clonazepam withdrawals have stripped me down to the core and it’s a scary place to be. I think and hope that I can do this, especially since we’ve made it this far all ready, and it truly is “we” that are going through this, because I’m not alone in this. I want to make sure that anyone else who might be on such a potentially dangerous medication, and manages to find this obscure blog when trying desperately to find honest accounts of going through this, doesn’t try to do this alone. You must have a “we” situation in order to survive. I wholeheartedly believe it. I honestly think it’s natural to consider suicide or to give in with all of these symptoms. It is nearly unbelievable that I’ve survived through even half of these symptoms and days, and each day is a true blessing, no matter what is happening with my body. There is hope. Without being part of “we” and having that support for not just the physical aspects, which are the ones that I don’t know are survivable without help, but also for the mental aspects, since the medication that masked the bad parts from yourself is gone. You need help with the deconstruction and rebuilding, because Clonazepam is usually prescribed when you don’t have the healthiest thoughts. In my opinion any prescriber should have to sign a contract with you before you ever touch one of those pills.
I think a Faith that has a loving and supportive base to it would be a massive help to someone in my situation. It might even be enough to help someone get through the mental aspects that swarmed in shortly after the medication started to leave my body, and has torn at the very base of my thinking, but I don’t have that right now so I’m clueless on it. And I truly believe that yet another epiphany-type situation like this was what I needed since I obviously didn’t deconstruct fully before. However, I do NOT believe that anyone should go through this. I believe that someone MUST have a support system in able to make it through any of the Clonazepam withdrawals. (Or really any kind of medication that your body becomes dependent upon and can cause such potentially deadly symptoms.) I wish I’d known before I had to start this withdrawal process that I shouldn’t, and didn’t, have to do this without some doctor being involved every step of the way. If I hadn’t gone through so much all ready, and am now passionately against taking a different medication that has the potential to cause a similar situation again, I’d check into a rehab center immediately, since I know I don’t have the medical support I should have. All a doctor can do now is treat my symptoms and try to help me not relapse, or treat the seizures the withdrawals have the potential to cause. For me it would be too dangerous to take another medication. The Clonazepam was discontinued at a cruddy dosage and I should have had that substitute as I started to taper off of the medication. At this point I could potentially develop an addiction to another medication if it stopped all of these symptoms. Honestly I don’t want to go through another hour of withdrawals, especially when I don’t know what will be the next symptom that hits me the hardest for a while and it’s so excruciating to experience. This isn’t a punishment inflicted on me because I haven’t done or been good enough though, as I had sadly felt deep down. This is a situation I should have never been put into, let alone left to go through with, believing we had no other options to help get me through this. Not one professional ever recommended going to a rehab when they learned about my being stranded without refills and facing withdrawals, and they never expressed why they wanted me off of the medication originally, instead of simply saying they don’t believe in using Benzos, so they won’t get involved with anything about it in my life. If one doctor or nurse had explained that it’s not just a policy or a disbelief, that this medication was being prescribed in a manner that could kill me if it wasn’t discontinued in the proper way, I would have gotten off of Clonazepam before it was so dangerous and difficult for me, and I would have had a doctor involved for the whole shebang. I’m so used to the medical field questioning the validity of Fibro that they won’t treat anything beyond what’s provable in labs. A doctor not believing a treatment is appropriate for an invisible disease is a new normal for me at this point. It’s hard to not be furious and go sue happy on some providers, because I feel that it goes against their oath to not express their concern for my health and make sure I understand the risks as they know them. It’s their job to make sure I am safe and my health isn’t being damaged by another’s treatment without my knowing it. I try to focus on the fact that it was my job as the patient to become informed about anything that is prescribed. I don’t often fully trust doctors, but unfortunately I did with this, and I feel that it should be malpractice against everyone from the prescriber who didn’t make sure I could safely discontinue Clonazepam, all the way up to the Primary Care who refused to even discuss why I was on it, let alone explain why they would not get involved, if I continued to take the medication after making sure that I knew the risks. And no Primary should ever make their patient go through withdrawals on their own – the doctor should make a plan with the patient in case the prescriber doesn’t take care of that PCP’s patient in the safest way. No PCP should ever leave their patient feeling stranded when it could be fatal. The shouldn’t flippantly advise to go to the ER because they disagree with something. It is what a patient-doctor consultation is for. Establishing care. They need to make sure their patient gets help no matter who the prescriber is, especially when I learn part way into withdrawals that it’s potentially fatal and impossible to do alone. Primary Care means they’re the one who will oversee what all the other providers are doing and make sure the patient is safe. They’re the primary care provider. I’m actually firing that doctor and trying to get in at a whole different medical facility once there is an opening. They can kiss my big toe before I’ll ever trust them again…