I was sitting here minding my own business, blogging away, and speaking positive about life and how I keep my "eyes wide open", when Blam! reality smacked me upside my Pollyanna head. I type on my laptop with some difficulty but I persevere. The fingers on both of my hands seem to have our minds of their own. They fail to extend, they shake, they ache, and they tremor. They frequently and involuntarily, tap a combination of keys that open up new pages, show me history, and even delete prose that I've worked on for lengths of time. They also fail to depress keys leaving me wondering what my darn point was anyway. Most recently, these tremoring fingers have taken to making my on-screen text smaller and smaller as I attempt to get my thought out of my head and onto electronic media.
I wish that I could say that I handle these instances with dignity and grace but that would be a lie. I curse. Oh, I patiently take a bunch of it but inevitably I reach my maximum allowable errors (whatever that arbitrary number is) and then I burst into profanity. It does not help. Oh, I suppose there is a delicious licentiousness in shouting out expletives but they are intrusive and upsetting to others within earshot namely my husband and my cat. My cat slinks away and my husband, the construction worker, lets me know that my cursing annoys him to no end. Ironic, huh?
Today my frustration boiled over and melted me down. Woe to my long-suffering husband as he got a heaping spoonful of my grief and self-pity. He sat slumped on the couch, (his customary position when he's out of work, depressed, or home from work), and was minding his own business (otherwise known as watching westerns). I told him of my frustration at the continuing progression of my malfunctioning fingers (with swear words and feeling) then spat out that I didn't think the blankety-blank Deanna Protocol was stopping the progression. He looked at me and said that he didn't think it was working either and then I laid into him. "Well, I guess we won't know if it worked or not because I have yet to get full dosages of CoQ10, AKG or had a single glutathione IV. Nor does he bother to do the coconut oil massages, or any of the exercises that our occupational therapist prescribed for us to do together. (Understand that I need his abilities to stabilize my joints and not allow my weak muscles to become overtaxed or damaged in any way.)
His response is what it always is, "You just can't stand it when I sit to relax! Everything has to be your way!" My response, "This is my life, MY life, that is leaking away little by little as we sit and do nothing to stop it. I am dying!" He says, "Yes, you ARE dying." Like a taunt? Like a fact of life, the war is already won and he gives up. I am incensed. "I am DYING! I am losing my life as I sit here and say nothing while you sit there and watch westerns you've already seen and don't do anything to try to save me!" He says that he already does everything and that I can't give him a moment's peace. I reply that we don't do everything. We haven't bought a clock that chimes on the hour to help que the hourly AKG dose. We haven't found a place to do glutathione IV, I've had one coconut oil massage despite my dogged pursuit of physical activity, there's not been one attempt to hire a contractor to modify the doors or do the necessary bathroom remodel. And isn't it wonderful that just today we finally got passport pictures taken for a cruise I won't be able to go on because nobody bothered to book a handicap room! (Admittedly, beyond our control as it is someone else's Disney cruise timeshare but my husband forked over $2,000.00 cash thus sealing my fate to a cruise I'll never be able to take.)
His response...you should just go find someone else that is able to do all that you require because I can't do it. Well, there's a solution! Why didn't I think of that?! And what the Hell happened to "...in sickness and health as long as you both shall live, so help you God."?
To be clear, my husband, my sole caregiver at this time, does quite a lot in an effort to care for me. Sometimes I take out my frustration upon him and that is decidedly not fair. I am quick to find fault in myself as I cannot bear to be unkind to him. I realize that he never asked for this (and neither did I). It is an unfair accusation that I never give him a moment's peace as we spend hours and days holed-up alone in our home, he watching television and reading books for hours on end while I blog, Facebook, visit ALS forums, listen to books, read ebooks, or visit with friends to keep out of his hair. I get it that he is likely depressed and angry at this disease but 3 weeks of doing nothing constructive to speak of, not looking for work, no counseling, angry when I ask to go to a meeting or ask for a ride to the pool because it was inconvenient for someone else to take me...let's just say I reached the end of my rope.
I wish that I could say that I handle these instances with dignity and grace but that would be a lie. I curse. Oh, I patiently take a bunch of it but inevitably I reach my maximum allowable errors (whatever that arbitrary number is) and then I burst into profanity. It does not help. Oh, I suppose there is a delicious licentiousness in shouting out expletives but they are intrusive and upsetting to others within earshot namely my husband and my cat. My cat slinks away and my husband, the construction worker, lets me know that my cursing annoys him to no end. Ironic, huh?
Today my frustration boiled over and melted me down. Woe to my long-suffering husband as he got a heaping spoonful of my grief and self-pity. He sat slumped on the couch, (his customary position when he's out of work, depressed, or home from work), and was minding his own business (otherwise known as watching westerns). I told him of my frustration at the continuing progression of my malfunctioning fingers (with swear words and feeling) then spat out that I didn't think the blankety-blank Deanna Protocol was stopping the progression. He looked at me and said that he didn't think it was working either and then I laid into him. "Well, I guess we won't know if it worked or not because I have yet to get full dosages of CoQ10, AKG or had a single glutathione IV. Nor does he bother to do the coconut oil massages, or any of the exercises that our occupational therapist prescribed for us to do together. (Understand that I need his abilities to stabilize my joints and not allow my weak muscles to become overtaxed or damaged in any way.)
His response is what it always is, "You just can't stand it when I sit to relax! Everything has to be your way!" My response, "This is my life, MY life, that is leaking away little by little as we sit and do nothing to stop it. I am dying!" He says, "Yes, you ARE dying." Like a taunt? Like a fact of life, the war is already won and he gives up. I am incensed. "I am DYING! I am losing my life as I sit here and say nothing while you sit there and watch westerns you've already seen and don't do anything to try to save me!" He says that he already does everything and that I can't give him a moment's peace. I reply that we don't do everything. We haven't bought a clock that chimes on the hour to help que the hourly AKG dose. We haven't found a place to do glutathione IV, I've had one coconut oil massage despite my dogged pursuit of physical activity, there's not been one attempt to hire a contractor to modify the doors or do the necessary bathroom remodel. And isn't it wonderful that just today we finally got passport pictures taken for a cruise I won't be able to go on because nobody bothered to book a handicap room! (Admittedly, beyond our control as it is someone else's Disney cruise timeshare but my husband forked over $2,000.00 cash thus sealing my fate to a cruise I'll never be able to take.)
His response...you should just go find someone else that is able to do all that you require because I can't do it. Well, there's a solution! Why didn't I think of that?! And what the Hell happened to "...in sickness and health as long as you both shall live, so help you God."?
To be clear, my husband, my sole caregiver at this time, does quite a lot in an effort to care for me. Sometimes I take out my frustration upon him and that is decidedly not fair. I am quick to find fault in myself as I cannot bear to be unkind to him. I realize that he never asked for this (and neither did I). It is an unfair accusation that I never give him a moment's peace as we spend hours and days holed-up alone in our home, he watching television and reading books for hours on end while I blog, Facebook, visit ALS forums, listen to books, read ebooks, or visit with friends to keep out of his hair. I get it that he is likely depressed and angry at this disease but 3 weeks of doing nothing constructive to speak of, not looking for work, no counseling, angry when I ask to go to a meeting or ask for a ride to the pool because it was inconvenient for someone else to take me...let's just say I reached the end of my rope.
Comments
Post a Comment