I'm not sure I can think anymore. I'm not 100% sure my mind works anymore. I think for the longest time, I was afraid that I wasn't going to be the same person on the other side of this thing and now my greatest fear is that I am.
Showing posts with label myelofibrosis. Show all posts
Showing posts with label myelofibrosis. Show all posts
Friday, May 8, 2015
Thursday, July 10, 2014
You Can See The Sun Shining if You Really Want to
Any that's spent 5 minutes reading my blog knows that over the last several years, me living out that year wasn't always as certain as it should be relative to someone my age. I've only had close encounters with the possibly of not seeing the sun rise the next day maybe about 4 times, but other than that, my basic survival was in question for the last 3 years because of my failing health. What have all these brushes with death taught me? They've taught me the importance of regret. They've taught me the importance of love. Most importantly, I've learned that there are only a certain number of things in life that I can actively control. Sometimes a shitty situation is a shitty situation and you've gotta take it for what it's worth. Sometimes, you've gotta concede defeat in order to continue the war.
Lately, I'm having difficulty telling who the good guys are. I guess war is a bad analogy when trying to describe your life, but if nothing else, I've been battling, trying to get up the hill, and back to myself. Of course, I would have absolutely zero chance if not for my incredible (perceived) support system. For the past few days, I think my neuroses when it comes to the people around me has been getting the best of me. I think it might be a product of the fact that in one way or another, I don't remember really being alone for any extended period of time for the last 5 years. I've always had someone around or at least close by because of the seriousness of my health. Unfortunately , it seems as my physical health improves, I might be exposing my frayed mental health.
This all started when Anita left a week ago to visit her about-to-pop pregnant sister. In the weeks leading up to her flight, I joked around with her that she's clearly making a terrible decision and who knows if I could survive by myself. I'm beginning to think those jokes were really some sort of panic attack by my subconscious. What's troubling of that I haven't even been ALONE for any extended period of time, yet. Really, since she left a week ago, I think I've maybe spent about 30 hours or so by myself. Thanks to a few of my better friends and my nephew's birthday, I've been spending most of my hours with other people occupying my mind. Tonight marks the first night that I will be in a stretch of a week by myself and if tonight is any indication.... Uh oh.
I don't really know what's wrong with my head. I don't recall ever being this neurotic. I'm actually complaining about the sincerity of the people in my life while also writing (typing?!) that in the 2 weeks that my wife is scheduled to be away, I've had or have scheduled things to do with other people on every day but 4. You would think a 33 year old man could survive 4 days alone, right? Only 2 of those days are consecutive! Pull it together, man!
So what I'm trying to say I know I'm crazy, but am I? I've always been adept at reading people and assessing the situation, so either what's going on here is that my recovery has somehow caused a short-circuit in that ability OR there is an actual issue with the people that I count on. The people that I REALLY need.
I know that some of the signals I've been receiving in my head are simply just the crazy going out for a walk. The other day, I friend was tagged in a photo embracing another friend and it triggered a pang of jealousy. I couldn't understand why I wasn't privy to such embraces. From that moment on, I basically lost control of my sense of confidence. Even after I came to my senses and remembered the COUNTLESS times said friend and I have really had no issue with tactile affection and there are numerous pictures of us doing so. Displayed. In my apartment. All the time. Still, to continue the metaphor, you can't call back the dogs of war.
I started to see it everywhere. My family. I spent time at my sister's house both for my nephew's birthday and for the party for his birthday. I don't know why, and it was nothing that anyone did, but something didn't feel right. Somewhere around the time I started dating Anita, my relationship with my sister changed for the better. Before we had a cordial relationship, but not really as loving as you would think a brother and sister would be. I keep linking it to me dating Anita, and I'm sure that played a part in it, but really my illness as difficult as it was, had the happy side effect of really bringing my sister and I together. Since that change occurred I've always felt at home whenever I've been in her house. For some reason, when I visited them for my nephew's birthday on the 8th (I actually came the night before because I wanted to bake some things for him on his birthday - he loves that) I had this uneasy feeling. At this point, I can only attribute it to my own ridiculousness, but that doesn't mean it wasn't there. In fact, last night I had to get some prescriptions filled and I found out the CVS by her house wouldn't tell me if they carried the meds I needed. I should've gone to the CVS and inquired in person, since the drugs I take are pretty powerful and subject to abuse by pill poppers, I think the pharmacist was just being cautious. Much to my dismay, my first reaction was relief. Relief that I would have to go home and be back in my "safe zone." About an hour after I told my sister that I needed to go home and refill my meds at my local pharmacy, I realized that I had enough medication to last the night and the next morning. In order to follow the prescription, I would need to be home by noon-ish . I wrestled with it. Part of me still wanted to go home. Luckily, my better angels prevailed and I told her that I could stay the night. My decision to stay was even protested by my mother who said that I need to stop jostling (I don't know how I jostled, any uncertainty all played out in my head) and that she had already moved her bags to the door and for some reason, that meant the decision to return home was final (I brought my mother). My initial instinct was to give in and go home, but I fought it off.
I've been fending off similar feelings with people that are less attached to me by blood. I think I've been perceiving really minor happenings into signs of problems left and right. I find myself being more polite, as I would with a lesser friend, with some people. I find myself challenging friends over nothing. Over things that we've been chiding each other with for years and years. For more than a decade. I find myself feeling as though I'm imposing when I have invited myself to events with my friends numerous times. It's almost expected at this point. If someone is doing something, usually, anyone can jump aboard. Why am I feeling so secluded? I've spent the last week SURROUNDED by loved ones and I can't shake this feeling.
Am I afraid that as I get closer to the other end of this journey that I am so changed that the people in my life won't recognize me anymore? Not value me anymore? So much about me has been forever altered by this experience. There are so many things that I wish could go back to the way they were (like my weight!) but I'm realizing more every day that they can't. This thing that affected me has left its imprint. In exchange for these unchangeable alterations, I get to live much longer than I would have without them. Was it worth it? What's worth feeling so alone? I know that I'm crazy, but have I really gone THIS crazy? Am I questioning my self worth? As I get better, am I still me? I'm not sure I want to answer that question.
Lately, I'm having difficulty telling who the good guys are. I guess war is a bad analogy when trying to describe your life, but if nothing else, I've been battling, trying to get up the hill, and back to myself. Of course, I would have absolutely zero chance if not for my incredible (perceived) support system. For the past few days, I think my neuroses when it comes to the people around me has been getting the best of me. I think it might be a product of the fact that in one way or another, I don't remember really being alone for any extended period of time for the last 5 years. I've always had someone around or at least close by because of the seriousness of my health. Unfortunately , it seems as my physical health improves, I might be exposing my frayed mental health.
This all started when Anita left a week ago to visit her about-to-pop pregnant sister. In the weeks leading up to her flight, I joked around with her that she's clearly making a terrible decision and who knows if I could survive by myself. I'm beginning to think those jokes were really some sort of panic attack by my subconscious. What's troubling of that I haven't even been ALONE for any extended period of time, yet. Really, since she left a week ago, I think I've maybe spent about 30 hours or so by myself. Thanks to a few of my better friends and my nephew's birthday, I've been spending most of my hours with other people occupying my mind. Tonight marks the first night that I will be in a stretch of a week by myself and if tonight is any indication.... Uh oh.
I don't really know what's wrong with my head. I don't recall ever being this neurotic. I'm actually complaining about the sincerity of the people in my life while also writing (typing?!) that in the 2 weeks that my wife is scheduled to be away, I've had or have scheduled things to do with other people on every day but 4. You would think a 33 year old man could survive 4 days alone, right? Only 2 of those days are consecutive! Pull it together, man!
So what I'm trying to say I know I'm crazy, but am I? I've always been adept at reading people and assessing the situation, so either what's going on here is that my recovery has somehow caused a short-circuit in that ability OR there is an actual issue with the people that I count on. The people that I REALLY need.
I know that some of the signals I've been receiving in my head are simply just the crazy going out for a walk. The other day, I friend was tagged in a photo embracing another friend and it triggered a pang of jealousy. I couldn't understand why I wasn't privy to such embraces. From that moment on, I basically lost control of my sense of confidence. Even after I came to my senses and remembered the COUNTLESS times said friend and I have really had no issue with tactile affection and there are numerous pictures of us doing so. Displayed. In my apartment. All the time. Still, to continue the metaphor, you can't call back the dogs of war.
I started to see it everywhere. My family. I spent time at my sister's house both for my nephew's birthday and for the party for his birthday. I don't know why, and it was nothing that anyone did, but something didn't feel right. Somewhere around the time I started dating Anita, my relationship with my sister changed for the better. Before we had a cordial relationship, but not really as loving as you would think a brother and sister would be. I keep linking it to me dating Anita, and I'm sure that played a part in it, but really my illness as difficult as it was, had the happy side effect of really bringing my sister and I together. Since that change occurred I've always felt at home whenever I've been in her house. For some reason, when I visited them for my nephew's birthday on the 8th (I actually came the night before because I wanted to bake some things for him on his birthday - he loves that) I had this uneasy feeling. At this point, I can only attribute it to my own ridiculousness, but that doesn't mean it wasn't there. In fact, last night I had to get some prescriptions filled and I found out the CVS by her house wouldn't tell me if they carried the meds I needed. I should've gone to the CVS and inquired in person, since the drugs I take are pretty powerful and subject to abuse by pill poppers, I think the pharmacist was just being cautious. Much to my dismay, my first reaction was relief. Relief that I would have to go home and be back in my "safe zone." About an hour after I told my sister that I needed to go home and refill my meds at my local pharmacy, I realized that I had enough medication to last the night and the next morning. In order to follow the prescription, I would need to be home by noon-ish . I wrestled with it. Part of me still wanted to go home. Luckily, my better angels prevailed and I told her that I could stay the night. My decision to stay was even protested by my mother who said that I need to stop jostling (I don't know how I jostled, any uncertainty all played out in my head) and that she had already moved her bags to the door and for some reason, that meant the decision to return home was final (I brought my mother). My initial instinct was to give in and go home, but I fought it off.
I've been fending off similar feelings with people that are less attached to me by blood. I think I've been perceiving really minor happenings into signs of problems left and right. I find myself being more polite, as I would with a lesser friend, with some people. I find myself challenging friends over nothing. Over things that we've been chiding each other with for years and years. For more than a decade. I find myself feeling as though I'm imposing when I have invited myself to events with my friends numerous times. It's almost expected at this point. If someone is doing something, usually, anyone can jump aboard. Why am I feeling so secluded? I've spent the last week SURROUNDED by loved ones and I can't shake this feeling.
Am I afraid that as I get closer to the other end of this journey that I am so changed that the people in my life won't recognize me anymore? Not value me anymore? So much about me has been forever altered by this experience. There are so many things that I wish could go back to the way they were (like my weight!) but I'm realizing more every day that they can't. This thing that affected me has left its imprint. In exchange for these unchangeable alterations, I get to live much longer than I would have without them. Was it worth it? What's worth feeling so alone? I know that I'm crazy, but have I really gone THIS crazy? Am I questioning my self worth? As I get better, am I still me? I'm not sure I want to answer that question.
Thursday, January 30, 2014
Welcome to the Shit Show
It's amazing how one thing going wrong in your life can so easily turn into a titanic sized clusterfuck. When someone turns on the light, everything that you've been hiding in the dark starts casting a shadow. Sometime, shadows make it just as difficult to see as the dark. This whole thing started because I was sick. I was sick beyond what I could handle. Beyond what anyone could handle. Beyond comprehension. Every time I mention to someone that I've had a stem cell transplant, their eyes bug out of their heads. "But you're so young," is the universally accepted response followed by other useless platitudes. It's true. I was young. This final process started when I was just 27. 27. I can't even imagine it anymore. When they figured out what was wrong, I was given almost a year to process the fact that a transplant might be in order.
But really, nothing could prepared me. Nothing could prepared us. After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged. I have to admit, I didn't really know how to react to it. Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness. That the people in my life all have some sort of stake in my survival. Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita. To this day I don't know how she did it. The nights sleeping on that hospital bed. Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur. Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter. Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on. The only thing I'm sure of is that I would not have had the strength in her place. I've always been the weak one.
I'm also amazed by how much my friends have been looking out for me. Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt. I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth. Don't the deserve a break? Doesn't everyone deserve a break from all this? Don't I fucking deserve a break from all this? Doesn't my wife deserve to live her life like any one of her peers?
Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems. I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion. I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies. I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse. Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now? I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.
I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside. All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with. How am I supposed to cope with my shitty childhood and my recovery simultaneously? Is that fair? To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own? How can I my mind hope to resolve when my body is taking so long? I'm just not sure this is going to turn out like we all wanted.
Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts. I'm plagued with thoughts of ways to stop the pictures from flashing through my mind. One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol. If I go out with my friends, I am now normally the designated driver because I just can't drink anymore. Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep. I think of taking more morphine that I'm supposed to in order to help clear my mind. To just make it go away, ALL of it. If only for the next hour. Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her. I've seen what addiction did to my parents' marriage. I've seen what it turned my father and my mother into. No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.
But really, nothing could prepared me. Nothing could prepared us. After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged. I have to admit, I didn't really know how to react to it. Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness. That the people in my life all have some sort of stake in my survival. Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita. To this day I don't know how she did it. The nights sleeping on that hospital bed. Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur. Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter. Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on. The only thing I'm sure of is that I would not have had the strength in her place. I've always been the weak one.
I'm also amazed by how much my friends have been looking out for me. Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt. I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth. Don't the deserve a break? Doesn't everyone deserve a break from all this? Don't I fucking deserve a break from all this? Doesn't my wife deserve to live her life like any one of her peers?
Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems. I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion. I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies. I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse. Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now? I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.
I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside. All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with. How am I supposed to cope with my shitty childhood and my recovery simultaneously? Is that fair? To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own? How can I my mind hope to resolve when my body is taking so long? I'm just not sure this is going to turn out like we all wanted.
Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts. I'm plagued with thoughts of ways to stop the pictures from flashing through my mind. One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol. If I go out with my friends, I am now normally the designated driver because I just can't drink anymore. Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep. I think of taking more morphine that I'm supposed to in order to help clear my mind. To just make it go away, ALL of it. If only for the next hour. Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her. I've seen what addiction did to my parents' marriage. I've seen what it turned my father and my mother into. No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.
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