My Lord, this is a nasty infection. I am just beginning to understand how nasty. It is likely to be a month or two before the infection itself is finally cleared. In the meantime I will be struggling with belly pain, nausea, frequent urination, and, oddly enough, a combination of diarhhea and constipation, my bowels bouncing from pillar to post through a mix of C-Difficile and Pepto Bismol.
Then there is the exhaustion, not just from ALS but from a weakened body fighting a nasty bacteria. This whole sickness thing is wearing me down faster than anyone can imagine. Last night I was unable to prop myself up on my elbow while laying in bed, something which has been slowly fading from my repertoire regardless. I am convinced this loss of ability has been moved along by my body's fight with C-Difficile.
Of course there is always the possibility that the doctors initial diagnosis is incorrect, that I don't have a C-Difficile infection, that my symptoms are from something else completely. If that is the case, I will surely look the fool, having made all this fuss. Still, something is making me feel like this. Something is causing the symptoms. Whatever it is, if it is not C-Difficile, seems to be doing a real number on my digestive tract. The other possibilities, such as kidney damage or damage to my lower intestines, are just as scary, if not moreso.
In the end, this is another of the many ancillery effects of ALS. I got the bladder infections from being in a wheelchair and having urination issues. I got the C-Difficile infection from having to go to the hospital, from having to use multiple anti-biotics, from what not else. While being ill makes me weaker, this weakness is here to stay. The main rule with ALS is that once you lose something, regardless of cause, you don't get it back, no matter what you do. ALS is a disease which constantly takes; it gives no ground in the battle. That's just how it is.
Tuesday, 7 November 2017
Monday, 6 November 2017
Today's Illness Update
Okay. I've eaten my probiotic yogurt. I've taken a couple of doses of Pepto Bismol. I've had a half litre of water to drink. My tummy still hurts, but it seems reasonable that I should get on with my day. It includes recovering the requisition for a stool sample to go to the lab, perhaps a visit to the medical clinic about 2 miles away with a bus trip to get there, and, possibly, doing some laundry. That's plenty for me.
I really am reaching my limits of tolerance when it comes to this particular bout of illness. It's tough enough to have ALS, but to have a belly ache, to be constipated, to feel like I am going to throw up almost constantly; this goes beyond what I can take. I have seriously contemplated not treating this infection at all, just letting it get really bad and then dying from kidney failure. I mean, how could that be any worse that what I am going through right now?
Of course I won't do that. It is not in my nature to surrender so easily. While my reason for living are becoming more limited each day, I still have enough in my life to make me look forward to, if not tomorrow, next week. While my quality of life is becoming severely compromised, it's still good enough that I can enjoy a day, even a day like today where I am ill and in pain. What I have to do is get the energy and effort out to do the tasks that need being done.
That's where it gets trick; the tasks that need being done. I have been constipated lately. Last night I finally had a bowel movement, the first one since Friday morning. Thanks to the Pepto, the Immodium, and whatever else might be pounding at my gut, my stools are hard and black, with yellow stripes in them. Good God! I'm shitting a Bumble Bee! No wonder it hurts so much.
I'll get through this. Or maybe not. I have absolutely no control over my own body any more. I can't "walk it off". I can't drive over to the doctors offices. I can sit on the commode chair for 4 hours, but I can't push anything out, which is kind of cruel in it's own way, because on Friday morning I couldn't keep anything in. And I definitely don't want to go back to the hospital. That's how all of this began.
I really am reaching my limits of tolerance when it comes to this particular bout of illness. It's tough enough to have ALS, but to have a belly ache, to be constipated, to feel like I am going to throw up almost constantly; this goes beyond what I can take. I have seriously contemplated not treating this infection at all, just letting it get really bad and then dying from kidney failure. I mean, how could that be any worse that what I am going through right now?
Of course I won't do that. It is not in my nature to surrender so easily. While my reason for living are becoming more limited each day, I still have enough in my life to make me look forward to, if not tomorrow, next week. While my quality of life is becoming severely compromised, it's still good enough that I can enjoy a day, even a day like today where I am ill and in pain. What I have to do is get the energy and effort out to do the tasks that need being done.
That's where it gets trick; the tasks that need being done. I have been constipated lately. Last night I finally had a bowel movement, the first one since Friday morning. Thanks to the Pepto, the Immodium, and whatever else might be pounding at my gut, my stools are hard and black, with yellow stripes in them. Good God! I'm shitting a Bumble Bee! No wonder it hurts so much.
I'll get through this. Or maybe not. I have absolutely no control over my own body any more. I can't "walk it off". I can't drive over to the doctors offices. I can sit on the commode chair for 4 hours, but I can't push anything out, which is kind of cruel in it's own way, because on Friday morning I couldn't keep anything in. And I definitely don't want to go back to the hospital. That's how all of this began.
Sunday, 5 November 2017
Anger Happens
It has been suggested apologize for my blog post of Friday, my distressed blast at doctors, nurses, hospitals, et. al. I can understand that suggestion. I blasted the very people who have, up until the last couple of hospital visits, been providing me with excellent health care. I howled about the very process which makes it possible for me to keep going in spite of a terrible illness. I get it; I need to be thankful for these people, not blaming them for things over which they have little or no control.
Apologies aside, the truth is I am tired of all of this, tired of seeing doctors, tired of dealing with hospital staff, even tired of the superiour care I get from Home Care. I am very upset about coming out of hospital only to find myself worse than when I went in. Mostly I am just tired of having ALS and all the other stuff that goes with it.
Once again, the truth is that there is very little the health care system can do for the proximate issue, that of having a progressively nasty terminal illness. This is a tough way to die, and even a tougher way to live. The doctor did not give me ALS. He had nothing to do with the possibility of C-Difficile, other than having the bad luck to be the messenger. Perhaps the nurse I had issue with has problems of her own she is dealing with; we all come as a single unit, sometimes its hard to leave your personal stuff behind. I know it is for me, for sure.
So, rather than apologize for saying how I was feeling, let me once again say what I have said in the past. I recieve world class health care, with little or no cost to me. I am treated well, mostly, by the system, rarely waiting for care, and only this recent experience had anything negative to it. Prior to this, I have always been impressed with what seems like the best health care you could get anywhere on the planet.
I was feeling really angry and upset on Friday. While it was triggered by events in the hospital, that underlying anger has more to do with me and ALS than anything else. When you are trapped with this anger, this distress about having ALS, there is no place to put it. Sometimes it comes out, whether you like it or not. It's the same as for the hospital staff. When I am distressed, there is nothing they can do about it. I come as a single unit; sometimes it's hard to leave my personal stuff behind. Somtimes I get angry. It doesn't make it right. It just happens.
Apologies aside, the truth is I am tired of all of this, tired of seeing doctors, tired of dealing with hospital staff, even tired of the superiour care I get from Home Care. I am very upset about coming out of hospital only to find myself worse than when I went in. Mostly I am just tired of having ALS and all the other stuff that goes with it.
Once again, the truth is that there is very little the health care system can do for the proximate issue, that of having a progressively nasty terminal illness. This is a tough way to die, and even a tougher way to live. The doctor did not give me ALS. He had nothing to do with the possibility of C-Difficile, other than having the bad luck to be the messenger. Perhaps the nurse I had issue with has problems of her own she is dealing with; we all come as a single unit, sometimes its hard to leave your personal stuff behind. I know it is for me, for sure.
So, rather than apologize for saying how I was feeling, let me once again say what I have said in the past. I recieve world class health care, with little or no cost to me. I am treated well, mostly, by the system, rarely waiting for care, and only this recent experience had anything negative to it. Prior to this, I have always been impressed with what seems like the best health care you could get anywhere on the planet.
I was feeling really angry and upset on Friday. While it was triggered by events in the hospital, that underlying anger has more to do with me and ALS than anything else. When you are trapped with this anger, this distress about having ALS, there is no place to put it. Sometimes it comes out, whether you like it or not. It's the same as for the hospital staff. When I am distressed, there is nothing they can do about it. I come as a single unit; sometimes it's hard to leave my personal stuff behind. Somtimes I get angry. It doesn't make it right. It just happens.
Saturday, 4 November 2017
Still Here
Yesterday was not a good day. Yesterday is yesterday, it has passed and gone. Today is a new day, a new start, a new time to make the best of where I am, of how I am living, of what I have in my life. Today is an opportunity for a good day, even though my tummy still hurts and my bowels remain uncertain.
The thing that makes a good day is to remember the good things that happen, and to forget days like yesterday. Today I have Chris, Chris and Dianne visiting with me. Today Sam, my HCA, came in and looked after me, tenderly and respectfully, kindly and carefully. She doesn't make me feel ashamed or embarrased to have what I have, to deal with the mess and fuss. Tonight Cabira, my evening HCA, will come to change me, perhaps to clean up another mess, and to help me get ready for bed. She will do the necessary things with a smile, finding humour in the midst of difficulty, making me smile along with her. These are the things which make a good day.
It is snowing outside. I will sit, drink my coffee, and enjoy the small dry flakes blowing past my window. I will be warm in my snug apartment, safe from the dangers that lay outside my doorway. No, I am not frightened. I know I am not alone in dealing with ALS. This disease is carried not just by me, but by all those around me, all those who care for me, who love me. I don't have to bear this burden alone, nor deal with the struggle by myself. I am not alone
The chill of winter has come. Ice forms on the sidewalks and parking lots. I have to bundle up to go outside. Even in this I have help if needed. My neighbours are there for me, often helping me with the smaller things, sometimes the bigger things. While the snow and ice may come, I am held in the warmth of those within my life.
Today will be a good day. I've already decided that. All I need to do now is look for it. It will be there, amidst the snow and ice, warming the inside of my life, covering me in its blanket. There are more good days than bad days. I am still here.
The thing that makes a good day is to remember the good things that happen, and to forget days like yesterday. Today I have Chris, Chris and Dianne visiting with me. Today Sam, my HCA, came in and looked after me, tenderly and respectfully, kindly and carefully. She doesn't make me feel ashamed or embarrased to have what I have, to deal with the mess and fuss. Tonight Cabira, my evening HCA, will come to change me, perhaps to clean up another mess, and to help me get ready for bed. She will do the necessary things with a smile, finding humour in the midst of difficulty, making me smile along with her. These are the things which make a good day.
It is snowing outside. I will sit, drink my coffee, and enjoy the small dry flakes blowing past my window. I will be warm in my snug apartment, safe from the dangers that lay outside my doorway. No, I am not frightened. I know I am not alone in dealing with ALS. This disease is carried not just by me, but by all those around me, all those who care for me, who love me. I don't have to bear this burden alone, nor deal with the struggle by myself. I am not alone
The chill of winter has come. Ice forms on the sidewalks and parking lots. I have to bundle up to go outside. Even in this I have help if needed. My neighbours are there for me, often helping me with the smaller things, sometimes the bigger things. While the snow and ice may come, I am held in the warmth of those within my life.
Today will be a good day. I've already decided that. All I need to do now is look for it. It will be there, amidst the snow and ice, warming the inside of my life, covering me in its blanket. There are more good days than bad days. I am still here.
Friday, 3 November 2017
God Damned Hospitals!!
I have just gotten home from a day trip to the hospital. God how I hate hospitals. I hate doctors, and nurses. I hate these charnel houses of sickness where treatment and cure are more myth than fact. I hate that there is nothing any of them can do for me, except perhaps make me worse.
As predicted by an online follower, I have a C-Difficile infection. Provided to me courtesy of Foothills Medical Centre, and multiple doses of overly strong antibiotics. Served up by putting me in a crowded, four person ward in my last visit, in spite of protestations that I am prone to infections, in spite of my warnings that placing me in a regular ward was almost a guarantee for additional problems.
I'm angry. I'm angry at the institutionalized insensistivity of nursing staff, leaving doors open while undressing me, making me feel awkward about having to pee in a diaper, placing their needs and feelings above those of the patient. I am angry about porters who pick you up and drop you off in various holes in hallways and darkened rooms without saying a word or noticing that your feet are hanging off the end of the stretcher.
This whole day, this whole infection, could have been completely avoided by proper cleanliness and care. It would have reduced the strain and stress in my life substantially if someone in that God Damned hospital has simply paid attention to me when I was in there the other day.
I am just so tired of all this bullshit. Cure me or kill me, but please stop making a bad situation worse.
As predicted by an online follower, I have a C-Difficile infection. Provided to me courtesy of Foothills Medical Centre, and multiple doses of overly strong antibiotics. Served up by putting me in a crowded, four person ward in my last visit, in spite of protestations that I am prone to infections, in spite of my warnings that placing me in a regular ward was almost a guarantee for additional problems.
I'm angry. I'm angry at the institutionalized insensistivity of nursing staff, leaving doors open while undressing me, making me feel awkward about having to pee in a diaper, placing their needs and feelings above those of the patient. I am angry about porters who pick you up and drop you off in various holes in hallways and darkened rooms without saying a word or noticing that your feet are hanging off the end of the stretcher.
This whole day, this whole infection, could have been completely avoided by proper cleanliness and care. It would have reduced the strain and stress in my life substantially if someone in that God Damned hospital has simply paid attention to me when I was in there the other day.
I am just so tired of all this bullshit. Cure me or kill me, but please stop making a bad situation worse.
Thursday, 2 November 2017
Labels
Bleh. My tummy is still bothering me. I have found an unfortunate correlation between my tummy troubles and the times I take marijuana, either in cookie or candy form. My arms are tired, my feet are tingling. It's just that kind of a start to a day. On top of it all, I'm a bit upset; not the tears and sadness upset, nor the anger upset, just sort of upset.
The reason for the upset is one of my small serving dish. I've had this small, two section serving dish for many years. I brought it to Calgary from Abbotsford, and had it years before I left. The other day I dropped it and broke it. The reason I dropped it and broke it was because I was trying to take it off of the high, corner shelf where someone, either a guest or a Home Care worker, had placed it. It was in the wrong place. I wanted to put it in the right place.
In order to get the serving dish off of the high, corner shelf, I used a grabby stick. It all started out well. I had a fairly good grasp on the dish with the grabby end of the stick. I lifted it out and off the high shelf. Then, about half way down, I lost my grip with the grabby stick and the dish tumbled to the counter, breaking into pieces once it hit.
The loss of this small serving dish means nothing in terms of actual value. It was an old dish, well used. It had no value as an antique or special object. In emotional terms, however, it represents many things. It represents the losses in my life of all that I have had for so many years. It represents the difficulty I have with dropping things. It represents the frustration in my life with things put away in the wrong place.
So I have dediced to take action, action suggested by Andrea and others over the last year or so. I am labelling all of the shelves in my kitchen with labels listing the shelf contents. Chris is helping me do this. I am using the label maker Andrea provided for this. Unfortunately it kind of makes my kitchen look like achurch kitchen or community hall kitchen, with labels everywhere. I don't like it, but I dislike the misplaced dishes even more. I'm tired of breaking things, of losing life long posessions. So labels it must be.
The reason for the upset is one of my small serving dish. I've had this small, two section serving dish for many years. I brought it to Calgary from Abbotsford, and had it years before I left. The other day I dropped it and broke it. The reason I dropped it and broke it was because I was trying to take it off of the high, corner shelf where someone, either a guest or a Home Care worker, had placed it. It was in the wrong place. I wanted to put it in the right place.
In order to get the serving dish off of the high, corner shelf, I used a grabby stick. It all started out well. I had a fairly good grasp on the dish with the grabby end of the stick. I lifted it out and off the high shelf. Then, about half way down, I lost my grip with the grabby stick and the dish tumbled to the counter, breaking into pieces once it hit.
The loss of this small serving dish means nothing in terms of actual value. It was an old dish, well used. It had no value as an antique or special object. In emotional terms, however, it represents many things. It represents the losses in my life of all that I have had for so many years. It represents the difficulty I have with dropping things. It represents the frustration in my life with things put away in the wrong place.
So I have dediced to take action, action suggested by Andrea and others over the last year or so. I am labelling all of the shelves in my kitchen with labels listing the shelf contents. Chris is helping me do this. I am using the label maker Andrea provided for this. Unfortunately it kind of makes my kitchen look like achurch kitchen or community hall kitchen, with labels everywhere. I don't like it, but I dislike the misplaced dishes even more. I'm tired of breaking things, of losing life long posessions. So labels it must be.
Wednesday, 1 November 2017
Enough Is Enough
I'm feeling a bit beat up and tired today, as if everything I do takes an extra bit of effort to get it done. I didn't sleep all that well last night eithe. Having gone to bed at 9:45 PM, I watched a bit of Netflix on my phone, finally feeling like sleep at 10:30 PM. So I shut things down and tried to sleep. The hourse rolled by until, finally, at around 1:00 AM I took a sleeping pill.
The weakness I feel is particularly in my left arm. This morning in the shower I was unable to lift it above my head, unable to use my left hand to wash my scalp or spread shampoo. Unltimately I gave it a bit of help with my right hand, thus getting both hands involved in the hair washing event. When I was done, I moved my left hand to the side of my head and it flopped down, not quite useless but certainly limited in what it would do when asked to reach above my shoulders.
Even my fingers are feeling weak today, the effort of typing noticeable for the first time. Both the muscles and joints hurt, a maddening combination of arthritis due to aging and muscle weakness due ot ALS. Fortunately as I type I rest my hands on the laptop surface. Were I compelled to hold my hands up as I type, the way they taught is during typing class in high school, there would be few words exiting from my fingertips today.
It is important to note here that is is not my mood in decline. I am not down. I am not depressed. I am not dreary. The weakness in my arms and hands does not indicate any weakness of mind or spirit. I'm in a good mood, but for the ache in my arms. Perhaps a half cookie is in order to ease the pain, or better yet one of the new candies my cousin sent to me. I'll let you know how it works out.
There are going to be more days like this, more often, as my arms move from partial to complete loss, as my fingers begin to fail more consistently. Soon there will be nothing functional left of me, except possible for slurred speech and blinking eyelids. That's will be it. It's coming; I can see that train clearly. While I may be unable to move from the tracks, I'm actually looking forward to that train getting closer and closer, finally finishing this voyage. Enough is enough.
The weakness I feel is particularly in my left arm. This morning in the shower I was unable to lift it above my head, unable to use my left hand to wash my scalp or spread shampoo. Unltimately I gave it a bit of help with my right hand, thus getting both hands involved in the hair washing event. When I was done, I moved my left hand to the side of my head and it flopped down, not quite useless but certainly limited in what it would do when asked to reach above my shoulders.
Even my fingers are feeling weak today, the effort of typing noticeable for the first time. Both the muscles and joints hurt, a maddening combination of arthritis due to aging and muscle weakness due ot ALS. Fortunately as I type I rest my hands on the laptop surface. Were I compelled to hold my hands up as I type, the way they taught is during typing class in high school, there would be few words exiting from my fingertips today.
It is important to note here that is is not my mood in decline. I am not down. I am not depressed. I am not dreary. The weakness in my arms and hands does not indicate any weakness of mind or spirit. I'm in a good mood, but for the ache in my arms. Perhaps a half cookie is in order to ease the pain, or better yet one of the new candies my cousin sent to me. I'll let you know how it works out.
There are going to be more days like this, more often, as my arms move from partial to complete loss, as my fingers begin to fail more consistently. Soon there will be nothing functional left of me, except possible for slurred speech and blinking eyelids. That's will be it. It's coming; I can see that train clearly. While I may be unable to move from the tracks, I'm actually looking forward to that train getting closer and closer, finally finishing this voyage. Enough is enough.
Subscribe to:
Posts (Atom)