Rx: Life -Take with Medicine

So there is no cure for Ankylosing Spondylitis, nor depression, anxiety, bipolar, fibromyalgia or Multiple Sclerosis. None for almost any autoimmune diseases I can think of. I’ve been told it’s something rampant in my family and that I must deal with it. That it explains every issue I face. I carry one of the genes associated with MS. Unfortunately, I did pass that to my daughter who now has MS. We are very lucky in that so far hers is more RIS (Radiologically Isolated Syndrome). She is being treated with injections done 3x per week. I think as of this point in my life I’m dealing with a new denial. Denial that I am dealing with worse symptoms and that my mind doesn’t function as magnificently as it used to. I know it doesn’t but I keep trying to push my limits. That’s not always a bad thing until I get stressed and it makes everything worse in my body. I live in worsening guilt everyday as a mother in that every choice I’ve made was wrong and damaging somehow.

In my mind I am sitting in a chair in an empty room and staring into the dark corner. I have nothing I can face; not even myself with a mirror. In fact the hardest thing I could do right now IS look into a mirror. I only deal with the random thoughts that pass by in record time. Flashing before my eyes in a speed that no one else would figure out what each image means. It’s impossible to remember some things yet hard to forget a lot.

I began to accept myself, who I’ve become and the choices I made in my life around my early 30’s but I am now in my late 30’s and I find myself more confused. I was given a beautiful moment of clarity and it’s being ripped out from under my feet. Accepting I have an illness is one thing but accepting that I’m progressing in that illness is just as difficult. Chronic pain is always there but the flares just worsen; it’s an inevitability that I’m finding hard to come to terms with. I knew from the beginning there was no cure for any of the situations I am dealing with but in my mind there was always hope. I think that’s a natural part of being human. It’s the same as a will to live buried inside instinctively. I don’t think that is lost even taking a last breath from suicide. I really think it’s pure instinctual for humans. An example might be when you have eaten something bad; your body retches and vomits to save you in what way it can because your anatomy knows “this is bad! I must get rid of this to survive!” Please don’t misunderstand, I do understand the feeling of wanting to die. I have been there and I have almost succeeded. No matter how hopeless I was, my body was still fighting. No matter how much I wanted to close my eyes and never wake up panic set in. I still think I should die but today I’m too lost to even go anywhere with that.

My episodes of depression seem to be lengthening to where probably 10 months out of a year I can’t even feel content. It’s also not so up and down and scattered. It’s a longer duration of mental anguish, regret, fear, loss, despondency and unrelenting painful sadness. ECT (Electroconvulsive Therapy) did get me through some rough months but my short term memory was/is awful. I still repeat things to loved ones that I’ve told them on multiple other occasions. They get angry at me and say, you’ve already told me. I haven’t had ECT since 2013 or 2014. I honestly don’t remember the last ones. If I combine my already bad memory with episodes of consistent Fibro fog I can get lost to the point I am full of confusion.

As for worsening pain and mental illness or maybe it can be called a “change” in my illness, I discover more about myself and the way my body is responding. For reasons unknown and incidentally, a nodule was found on my thyroid. I’ve been told incidental findings are usually how a patient and their doctor learn of an existing nodule. A follow-up ultrasound has shown, since that one was found in 2015, that I now have several. I do have autoimmune thyroiditis and these nodules are smaller than recognized needing biopsy. So I pay attention to any possible hyper or hypo thyroid symptoms and try to ignore the fact they’re there. It’s not hard to ignore really, especially with my memory, but this is where I get into trouble. My doctors and I count on my memory to aid in new treatments and to refer to past treatments for my health issues. So many times I’ve recalled something and it was off by a few years or several months. Even recalling numbers of weeks is difficult. Remembering any reasons for stopping or starting a treatment are long gone.

I feel like there is no time, at least in a measured sense with days and months. Everyday is an extension of the previous with a nap between. For me the day is one long existence. I can’t remember or realize what day it is until I look that morning. I want so badly to live in a numb physical and mental realm. That reminds me about a time probably over a year ago that I had a huge breakdown of tears. I couldn’t stop no matter how much I tried, yet it felt wonderful to get it out. As I’ve mentioned before, I’m not one to cry. If I am crying then it must be bad. It may not be bad for another person but for me whatever it is I’m upset about, it’s awful and intolerable. Sure it felt good then but spending that way day after day with or without tears is a lonely life. No one wants to be around me after awhile. Everyone I love gets tired of me saying I’m hurting, I’m sad, I’m in pain and I’m tired. Tired meaning- done with everything. I don’t think I’ve used the word “tired” as in, just worn out and need sleep, ever in my adult life. For me it’s always meant- this is my breaking point; if I died it would be a blessing. I can’t deal with anything anymore including my own thoughts. For physical tiredness I use “exhaustion” or “fatigued”. To me these definitions are better suited for my own body. Problem is, saying “I’m tired” has become the standard “how are you?” circumstance. No one pays attention to what I really mean nor want the real answer to “how are you?” It’s become a repeated robotic answer to say “I’m fine”. Can you actually remember every time you’ve been asked? I can’t and the times I was really struggling? I would have given anything to be truthful and have the other person not leave me until I was okay. People asking and not wanting to stick around for the real answer are why I (and everyone) began repeating the lie saying “I’m okay” or “good”.

So to everyone, I’m okay, I’m fine and I’m good. That’s what you want to hear isn’t it?
Sincerely,
KatieB

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📍- A blog post from ‘Thursday’s A Geek’ that’s worth sharing!-  ‘I have more Specialist than I do friends.’ 

http://wp.me/p7SVkj-2W

This is a wonderful post that I’m sharing from another blogger. Check it out and maybe follow- there’s some great stuff from a fellow spondy/spoonie 👍 As always, thanks for being here!

Why? No Answer

I’m not doing anything different or special. I’ve been thinking for a few weeks and trying to decide a lot of things. I’ve been in intense pain and my doctor can only say it must be a flare-up of my ankylosing spondylitis. So I was started on a long course of steroids and methorexate was added back to my med regimen weekly right before the prednisone. Then it was time for my next injection and I now have a cold virus too. When it rains it truly pours because my depression is just crashing further and further. I really didn’t want to even write anymore. I spent #WSPD2017 underneath a mask just hoping I could not only convince myself that things are better but to hope something I say might help someone else. I know nothing I say helps me because I don’t believe myself. I don’t believe IN myself I suppose. I’m nothing more than a lonely, depressed, lost and insufficient woman. Yeah pity party right?

No.

It’s a way to vent without personal backlash. A way to just as I was accused in the past- “air my dirty laundry”. Well I don’t care anymore. I don’t intellectually care in a way about most things. I just feel everything. I don’t want to feel anymore. I don’t want the haunting thoughts I have nor the distorted disgusting nightmares. I’m so sick and tired of my obsessive thoughts. So much so that I want to smash a brick into my brain. Then there’s everyone. Everyone else that I have to constantly think about. It’s funny when I feel entirely alone yet I’m constantly ‘sticking around’ to soothe everyone else by being alive. I exist and that’s enough. Why would being dead be any different if no one knows that I do exist now. It’s a quiet safe notion in their heads. Breathing because it makes everyone else feel safe and comfortable. Who is on the selfish side of this war? I have to live in my head. It’s the current safe place. I can listen to myself. I don’t bother saying much to anyone anymore and when I do it just becomes a chaotic desperate attempt to keep myself alive. Not the other person I’m talking to; it’s me trying desperately to save myself. A best friend is not really a best friend; there are always limits. A family is not family as there are limits there too. Only place there are no limits, no boundaries and no shame or guilt, no pain mentally or physically and no grief is with our Lord.

I don’t fear death. I’ve been well exposed to it, however; I’m afraid of the process by which becomes death. If it was easy there would be no second thought. So as a mother I have a terrifying consistent thought about my daughter. It doesn’t matter she’s an adult. What matters is I don’t want her to get this deep into the hole. Where there is just no climbing out anymore. The dirt just pours in the more I cling to the sides and try to climb out. Buried alive. It doesn’t matter whose grave because it becomes mine. I only pray over and over she really is more like my mother.

I don’t think anything more I say will change anything in my mind and Lord knows I’m not helping a single person out there. My intention was to connect to those lost inside as well and maybe they would know there are others that feel certain ways; but are there? I’m certainly the one searching and honestly I can’t find a soul out there that is even slightly like me. I want to be unique, I know I am unique but to be alone in my thoughts is such a dangerous place to be. If I can’t open up with my therapist, or my doctor and can’t get medication to help- then it’s my own fault I suffer. I just can’t do it. I made the mistake several times of opening up to friends, an ex-husband and others. Depression to the depths I feel just chases everyone away. I am avoided or feel no comfort. People run out of things to say and sometimes I just need physical touch. A hug, a stroke of my hair or a kiss on the forehead, holding my hand but as helpless as those people in my life feel/felt, they have no idea how helpless I am. And hopeless. I have no human touch and no human connection. Sure, that’s my doing. This emptiness is never filled.

I’m sick and tired of being sick. Depression, pain, physical pain, sadness, grief, distortion, obsession it’s all making me even more mad than how I started. When is enough, enough? This entire world is more than I can take. My patience with myself is worn completely thin. My patience is tired of it’s patience. What the hell am I doing? What the hell am I sitting here typing this for? Maybe I just don’t want this anymore.

He carried me & I didn’t know it

So it’s the evening of Thursday August 10th. Since my last post, well really since right before, I have been in a terrible downward direction. This dip into almost 6 feet under was a breakdown of a kind I haven’t had in many years. I’m sure I should have been in the hospital, I know that, but I had the insight not to be extremely obvious; that is until it got so much worse and quickly. For me insight can become a bad thing. A tipping point between life and death.

When these cycles are slowing I start to ‘wake-up’ and only remember portions of the brooding, irrational, death obsessed person I can be. This was one of those breakdowns that I am still reeling from trying to realize just where it all went wrong and any apology has to be meant. That meaning- I don’t apologize unless I mean it. So the aftermath of my destruction is a type of a post apocalyptic scene (For me). I’m confused right now. I’m trying to figure out just how to keep going and to keep fighting. There are so many things wrong that I almost never see any light.

Questions in my mind, where do I go from here? How do I proceed without breaking down again? Will the next time beyond saying “I give up”- say worse? Do worse words exist for the feeling of wanting to kill yourself? For me, saying “I give up” is in essence saying I AM going to complete suicide, or try my damn hardest. With past failed attempts no matter how serious I’ve been with ICU etc., or minor, I get such an immense feeling of guilt, fear and an odd desire to live when I could be dying at that moment. God has given me and I believe everyone, an extremely strong will. We were put here to spread our seed and in the beginning weren’t meant to die. Just my personal simple version to the reasoning. So whereto from here do I go?

I’d like to jump straight in with the most resilience anyone has ever had to continue living and to be an example how surviving is possible. I know people out there have and are doing this; however, I burn out. I’m very tenacious, bold, loving and stubborn but I also am crushed easily.

So here I am. Again. From cutting, over-medicating and praying for death back to confusion and hopefully a bit of stability long enough to recover from this breakdown. Those who stay in my life must be the resilient people I mentioned. I push so hard against anyone getting close to me. I try to consistently hide every emotion because that’s what I do- hide it. Maybe that’s why I open up here, because I can’t in reality. Somewhere along the years I must have been shown that my emotions were less important and were to be only utilized in private solitude. I try to prevent holding back tears when I want to cry and someone is around. I try so hard to retrain myself in thinking- it’s okay to cry around others. It’s okay that others know my emotions. I think a lot of men talk about this stigma but I’m a woman and I deal with the same circumstance.

I can’t seem to connect mentally with my psychiatrist’s nurse practitioner and I’ve had this problem before. I have a caseworker who is wonderful and seems to understand me. My psychiatrist is very knowledgeable and kind. His NP just seems sort of condescending, and forceful with her opinion of why something is going on in my brain. Yes, I have stress, more than most with my circumstances but even with proper outlets, it still remains; I have a chemical imbalance in my brain. Medications are not a panacea but neither is the mix of therapy and medications. I am one of those people who do need tweaking on occasion. I don’t as much as I did years ago thankfully (that was tumultuous).  There are NP’s and doctors that are huge med pushers but the NP I see almost refuses to tweak meds. However I am able to see my psychiatrist a few times a year and it’s a thousand times better. I don’t think there’s been one question he hasn’t been able to answer. I don’t feel inhuman or talked down to. I don’t feel I’m sick, I feel like a person.

So reeling in the wake of what just happened, I’m still in my fog. It’s a lot like the time I received a serious concussion at 18 years old. It happened, there was a memory lapse and everything looked wrong. It’s like my vision switched to a strange diagonal zigzag of black and white. I tried as hard as I could to walk but I felt I was just barely on my feet swaying and walking everywhere to get to my father’s back door. I heard my voice with little recognition screaming. I stumbled inside in hysterics. I sat down and the pain started. A lump probably the size of a baseball and I was going through my head sequence after sequence trying to figure out everything. I fell asleep for awhile and woke sitting in front of the toilet vomiting over and over until it became retching. The retching went for probably over an hour with only a few second pauses. I can’t explain too well why this relates to my breakdown’s aftermath but in my mind it does.

So I will try as of today to do this medication tweak I practically had to push for. If I hadn’t, I truly believe I would have walked out even more hopeless. That is the worst feeling and I have felt it before, when your health providers give up on you. I realize doctors and therapists are human too, but so are those of us who really need help. During the appointment I did stop trying. There was nothing else I could say, in my mind, that would get my feelings through to her. So instead of wasting time and the little energy I had left- I just started with my “I guess, uh huh, yeah” answers. That means they’ve lost me and in my mind I have dismissed them. I don’t know if they realize but if I’m pushed too far in a direction that isn’t helpful in any way, I recoil and go into my head. Really the whole appointment started awkward. She knew even though it was my scheduled appointment that I had spoken with my caseworker about this massive breakdown. She mentioned my suicidal thoughts and self-harm ahead of me showing up. I don’t think the NP even knew how to start the conversation. The energy in the room came across as thick animosity, and a feeling when your parent is scolding you. I felt like I had deliberately done something wrong. Or maybe she was upset I requested an emergency appointment with my psychiatrist. I can’t place my finger on it, but eventually I will figure out what this animosity is between us. I don’t think she cares to converse with me and often that feeling is mutual. I always kindly say thank you when leaving her office and she never responds other than to walk out back to her office. I just can’t solve this problem right now and it creates a feeling of dread going to these appointments.

So I’m trying to climb back out of the grave I dug for myself. It was almost my permanent resting place this time. I could say that about a lot of times but something was so much different this time. There are reasons for my life, I know that, but I’m not as concerned with what they are as I am to completing them. In my opinion it’s not what I’m told to do- It’s what I meant to do and where I’m led.

I received a beautiful vision today in the sky and I know it was from God. It was a reminder to me that something good always comes after the storm. My instant reaction was saying “thank you God, I needed that”. After I said those words in my head the vision faded away as quickly as it appeared. I feel so blessed when I finally get my answer from Jesus. Sometimes the evil in my head is so loud I have to fight to notice my answer. Or for a simple moment to take a breath. Even if it’s my last, I want it to be a breath for God.