I just got back from the doctor's office. Yes, I have another low grade bladder infection. These are so routine that I'm getting antibiotics in advance, just in case. Ultimately I will go on a persistent antibioutic schedule with low dosages. I'm not sure yet what this will do to the rest of my body; I'm fairly sure it will stop the infections though.
The other item on the agenda was my shoulders. Toimorrow I will get my first cortisone shot. I'm told by other patients that it should work fairly quickly to reduce the constant pain I am in. I'm also told that it will wear off, most likely in about 90 days, and I will have to have another shot. In other words, another chronic medication. There's that word again; chronic.
On the upside, other than these few minor health issues, I seem to be doing okay. I get tired easily, as is always the case. I'm obese, a good thing for someone with ALS. I didn't have any blood tests or heart tests; they do all that every time I'm in the hospital, so none of that stuff is necessary with my GP.
Thanks to the geneoristy of family and friends, I continue to eat well, if not completely properly. My appetite is truly sporadic; on one day, off the next. Yet I have no fears about the contents of my fridge. I have the food that I need. Thanks to my friend Moe, I have Scotch on the shelf. My bar is dry in a few other areas, but perhaps that is a good thing. I really don't need that big investment in liquor which is predominantly for others. I have what I want for myself. That's what really counts right now. If I could afford more, I would do it. But these days it is less about affording alcohol and more about saving for, and subsidizing, my home care.
This is not to say that I have lots of money. I still depend on what my family and friends give to me, either directly or through the DONATE button at the top of my blog. It is these combinations of steady, realiable support with the odd unexpected bonus gift that keep my head above water. None of this is easy, either financially, emotionally, or physically. It would be nice if I felt secure in at least one of these areas. For now I will appreciate what I have, and what I can do with what I have.
Things will change soon. They always do. That's why I try so hard to be grateful for what I have, for what I am given, and for the people around me.
Monday, 30 April 2018
Sunday, 29 April 2018
Should I Get Married?
I am having a very bad day today, from a simple physical perspective. I hurt. My arms hurt so bad it felt like a heart attack, except I know the difference. The pain has been radiating down my arm into my wrist. Overall, my body is suffering from a general exhaustion. After getting up to eat a nutritionally void breakfast of packaged cereal, I rolled over to the window with my coffee, lay back, rested, and completely forgot to drink that coffee. Most of it went into the sink.
The afternoon is already proving to be better. I've had some water to drink, eaten a few of the cookies Meaghan left for me. done a few tidy up chores, putt some of the detritus from the lasr few days back where it belongs. The painkillers have cut in quickly this time; my shoulder is already down from screaming to a mere whimper.
There has been one very interesting thing happen today, one which I have been expecting for some time. One which arrived this morning. First of all, it's important to understand that the vase majority of the care givers in this country are first generation immigrants, some so new they barely speak English. They have an English comprehension test in order to get into their Health Care Aide training program; the results demonstrate to me that it must be an incredibly simple test. Most of them struggle with the most basic of phrases.
One of my HCA's is from Cameroon, where French is the primary language. She entered Canada through Quebec about five years ago. This was a time when immigration rules for peoiple entering Quebec were primarly swept aside if they were French speaking. It lead to a flood of immigrants from a great many ex-French colonies. Unfortunately many of them have found that discrimination and cultural challenges have made Quebec their entry point, but not their home. They've moved around the country, learning English as they go.
My Cameroonian HCA asked me this morning if I knew someone who might help arrange a "false marriage" for her sister, who, apparently, still lives in Cameroon but wants to come to Canada. Her sister would come to Canada,. "fall in love", return to Cameroon with her fiance for the marriage, then apply to immigrate to Canada. I am not sure if this is the correct process; I know nothing of this kind of thing.
I did learn that there might be money involved, from the sister to the intended. I also learned that it would be nice if it became a "real marriage". I suggested I wouldl not be a good candidate; my expected life span is too short. She said she wasn't asking if I would do it, only that if I knew someone. I said no. That was that.
What do I do now? Mostly nothing. Asking me about someone to do an arranged marriage is not a crime. Arranged marriages with spouses in other countries is so common as to be seen as a standard process. The "false marriage" is merely confusion in translation. She really did mean arranged marriage, speaking extensively about the need to find someone who could do the arrangement.
But it was an interesting conversation.
The afternoon is already proving to be better. I've had some water to drink, eaten a few of the cookies Meaghan left for me. done a few tidy up chores, putt some of the detritus from the lasr few days back where it belongs. The painkillers have cut in quickly this time; my shoulder is already down from screaming to a mere whimper.
There has been one very interesting thing happen today, one which I have been expecting for some time. One which arrived this morning. First of all, it's important to understand that the vase majority of the care givers in this country are first generation immigrants, some so new they barely speak English. They have an English comprehension test in order to get into their Health Care Aide training program; the results demonstrate to me that it must be an incredibly simple test. Most of them struggle with the most basic of phrases.
One of my HCA's is from Cameroon, where French is the primary language. She entered Canada through Quebec about five years ago. This was a time when immigration rules for peoiple entering Quebec were primarly swept aside if they were French speaking. It lead to a flood of immigrants from a great many ex-French colonies. Unfortunately many of them have found that discrimination and cultural challenges have made Quebec their entry point, but not their home. They've moved around the country, learning English as they go.
My Cameroonian HCA asked me this morning if I knew someone who might help arrange a "false marriage" for her sister, who, apparently, still lives in Cameroon but wants to come to Canada. Her sister would come to Canada,. "fall in love", return to Cameroon with her fiance for the marriage, then apply to immigrate to Canada. I am not sure if this is the correct process; I know nothing of this kind of thing.
I did learn that there might be money involved, from the sister to the intended. I also learned that it would be nice if it became a "real marriage". I suggested I wouldl not be a good candidate; my expected life span is too short. She said she wasn't asking if I would do it, only that if I knew someone. I said no. That was that.
What do I do now? Mostly nothing. Asking me about someone to do an arranged marriage is not a crime. Arranged marriages with spouses in other countries is so common as to be seen as a standard process. The "false marriage" is merely confusion in translation. She really did mean arranged marriage, speaking extensively about the need to find someone who could do the arrangement.
But it was an interesting conversation.
Saturday, 28 April 2018
Grandchildren
I reap the whirlwind which I have sown, the thunder of mountain streem overflowing with spring runoff, the cacaphony of seagulls fighting over scraps be they at the seashore or at the dump, the screaming of overworked engines at a NASCAR race. My grandchildren have been and conquered, laying waste to the tidy landscape of my small apartment, leaving behind small bits of Lego, parrts of other toys, colouring books, crayons, food scraps. They came in with the whirlwind; now they are gone.
Just abruptly as they came in, they have left. Meaghan and Lewis shepherding Charlotte and Orson down to their car, into their carseats, on the road again. The quiet is immense. That raging mountain torrent turned to a trickle, that cacaphony of gulls satiated and silent, those screaming engince quieted at the end of the race. The silence is immense, near engulfing. All I have is the odd rush of a car going by on the street below. I need to turn on Paw Patrol, loud. I need to search the floor for bits and pieces, be they toys or food snacks.
Now I have to wait three long days while they visit thier other grandparents down in Lethbridge. Then once again my small apartment will bear the brunt of Ninjango or whatever else they can find on Netflix. Once again we will scramble into the van and go on an adventure. Once again little mouths will refuse to eat what I have cooked, wanting instead the familiar foods from Mom. They will be here Tuesday evening and Wednesday, departing Thursday once again to the coast, home.
I love it when they visit. I am disappointed when they leave. Sure, the presence of small children in my home can be challenging, especially when I have to explain why I have a bag filled with pee attached to my bed, or why I can't pick them up and put them on my lap like I did last year. Yet all these, and many more questions can be given simple answers. I have a bag because that's how I go pee now. I can't pick them up because I'm not as strong as I was last year.
With any luck I will see them this summer, for my daughter Kate's wedding party. I will likely be less able to pick them up, less able to do anything. But that doesn't mean I can't enjoy them, can't smile at their antics and wonder at their energy. Grandchildren are like that.
Just abruptly as they came in, they have left. Meaghan and Lewis shepherding Charlotte and Orson down to their car, into their carseats, on the road again. The quiet is immense. That raging mountain torrent turned to a trickle, that cacaphony of gulls satiated and silent, those screaming engince quieted at the end of the race. The silence is immense, near engulfing. All I have is the odd rush of a car going by on the street below. I need to turn on Paw Patrol, loud. I need to search the floor for bits and pieces, be they toys or food snacks.
Now I have to wait three long days while they visit thier other grandparents down in Lethbridge. Then once again my small apartment will bear the brunt of Ninjango or whatever else they can find on Netflix. Once again we will scramble into the van and go on an adventure. Once again little mouths will refuse to eat what I have cooked, wanting instead the familiar foods from Mom. They will be here Tuesday evening and Wednesday, departing Thursday once again to the coast, home.
I love it when they visit. I am disappointed when they leave. Sure, the presence of small children in my home can be challenging, especially when I have to explain why I have a bag filled with pee attached to my bed, or why I can't pick them up and put them on my lap like I did last year. Yet all these, and many more questions can be given simple answers. I have a bag because that's how I go pee now. I can't pick them up because I'm not as strong as I was last year.
With any luck I will see them this summer, for my daughter Kate's wedding party. I will likely be less able to pick them up, less able to do anything. But that doesn't mean I can't enjoy them, can't smile at their antics and wonder at their energy. Grandchildren are like that.
Friday, 27 April 2018
Bed, No Bed
Bad news today. The government agency I work with for essential income and supplies, the Alberta Assured Income for the Severely Handicapped, turned down my request for an adjustable bed. Their recommendation was that I get a standard hospital bed, either from another arm of government known as Alberta Aids to Daily Living, or through the ALS Society.
My challenge is that most hospital beds are 36" wide. That might seem like a lot, yet it is the width of a standard single bed. Even that is an increase from the older standard of 27". How anybody could sleep on a mattress that small is beyond me. In addition, the standard bed is 74" long, meaning for anyone who is 6' tall, there is a mere 2" for wiggle room. That's why my feet were often over the end of the bed when I was in hospital. They make a single XL, also known as a Twin XL, that is 80" long. So you can get long and skinny if you want.
A Double bed, the one favoured by newlyweds, is now referred to as a Full bed. It is 53" wide, yet perversely, only 75" long. Once again, if you are 6' tall or more, your feet dangle and your head bumps. That may not be an issue when you are young and active, but for me that shortness is a real problem. If my feet get over the end of the bed, I'm stuck with that for the night. There is nobody here at home to help adjust me at night.
A Queen sized bed, seemingly a luxury item, it the first bed where the standard length is 80". It is what many of us have at home. It is what I have right now. It is both long enough, and a 53", wide enough for me to fit nicely, allowing me to roll on my side without assistance. That's a big deal to me, but apparently I did not sell that well enough to the AISH upper management.
The truth is that most people in need of this kind of a bed will take a hospital bed; most of them are not limited by the width or length. Nor do they struggle with the limitations of a partial paralysis. When I do finally reach full paralysis, perhaps this won't matter so much to me. Until then, I would like to at least enjoy some degree of comfort in the place where I spend 12 of my 24 hours each day.
I have access to a used adjustable bed. The seller wants $1,000 but says she is open to offers. The bed, mattress, headboard and sheet sets are a couple of years old. It hasn't been used since last September and is in storage as far as I know. Unfortunately I am not in position to go check this bed out; I might ask one of my friends to do that for me. Then I can see how low the price will go. One of my friends recently gave me a fairly generous gift. Perhaps this is the right place to go with it.
My challenge is that most hospital beds are 36" wide. That might seem like a lot, yet it is the width of a standard single bed. Even that is an increase from the older standard of 27". How anybody could sleep on a mattress that small is beyond me. In addition, the standard bed is 74" long, meaning for anyone who is 6' tall, there is a mere 2" for wiggle room. That's why my feet were often over the end of the bed when I was in hospital. They make a single XL, also known as a Twin XL, that is 80" long. So you can get long and skinny if you want.
A Double bed, the one favoured by newlyweds, is now referred to as a Full bed. It is 53" wide, yet perversely, only 75" long. Once again, if you are 6' tall or more, your feet dangle and your head bumps. That may not be an issue when you are young and active, but for me that shortness is a real problem. If my feet get over the end of the bed, I'm stuck with that for the night. There is nobody here at home to help adjust me at night.
A Queen sized bed, seemingly a luxury item, it the first bed where the standard length is 80". It is what many of us have at home. It is what I have right now. It is both long enough, and a 53", wide enough for me to fit nicely, allowing me to roll on my side without assistance. That's a big deal to me, but apparently I did not sell that well enough to the AISH upper management.
The truth is that most people in need of this kind of a bed will take a hospital bed; most of them are not limited by the width or length. Nor do they struggle with the limitations of a partial paralysis. When I do finally reach full paralysis, perhaps this won't matter so much to me. Until then, I would like to at least enjoy some degree of comfort in the place where I spend 12 of my 24 hours each day.
I have access to a used adjustable bed. The seller wants $1,000 but says she is open to offers. The bed, mattress, headboard and sheet sets are a couple of years old. It hasn't been used since last September and is in storage as far as I know. Unfortunately I am not in position to go check this bed out; I might ask one of my friends to do that for me. Then I can see how low the price will go. One of my friends recently gave me a fairly generous gift. Perhaps this is the right place to go with it.
Thursday, 26 April 2018
Looking Out, Looking In
I don't like to write negative stuff. It seems like I am denying that life has its moments, that not everything in my world is a negative. It's true though, that there are some bad things going on all the time in my life, even on my best of days. This morning the sky is that white sprinkled blue that you can only get in a prairie sky. It's warm, so warm that my windows are wide open so I can feel the breeze, so warm that I am thinking I should get my big fan out to cool this place down. These are all good things. They are also all things external to my body.
If I turn that glance inwards, selfishly focusing on me, the picture is not quite so pleasant. I awoke this morning to pain in my arms and shoulders. Not minor pain; enough pain such that I wondered how quickly I could get some T3's with Codeine in me. That pain has barely lessened with the drugs in my system. It's still making me unwiling to move my arms or shoulders.
The report on the ultrasound and x-rays from the other day should be at my doctors office today. Is soon as I am done with this blog post, I plan on calling his office to see how quickly I can get into to see him. Not only am I concerned about the pain I go through, I am also concerned that I may be on the verge of yet another bladder infection. It's a chronic issue for me. I know I will be back on antibiotics shortly. That's just the way it is.
Perhaps it is just better for me to look outside, to meditate on the spring soon to arrive, its harbingers all about. If I focus elsewhere, the pain becomes more manageable. If I focus elsewhere, I can see good things, both in the world and in my life. If I focus elsewhere, I think a lot less about living with ALS and a lot more about life in general. Looking inward is not a good thing if all you see is darkness. I would rather listen to the birds, feel the breeze, smell the fresh air. Looking outwards is best on days like today.
If I turn that glance inwards, selfishly focusing on me, the picture is not quite so pleasant. I awoke this morning to pain in my arms and shoulders. Not minor pain; enough pain such that I wondered how quickly I could get some T3's with Codeine in me. That pain has barely lessened with the drugs in my system. It's still making me unwiling to move my arms or shoulders.
The report on the ultrasound and x-rays from the other day should be at my doctors office today. Is soon as I am done with this blog post, I plan on calling his office to see how quickly I can get into to see him. Not only am I concerned about the pain I go through, I am also concerned that I may be on the verge of yet another bladder infection. It's a chronic issue for me. I know I will be back on antibiotics shortly. That's just the way it is.
Perhaps it is just better for me to look outside, to meditate on the spring soon to arrive, its harbingers all about. If I focus elsewhere, the pain becomes more manageable. If I focus elsewhere, I can see good things, both in the world and in my life. If I focus elsewhere, I think a lot less about living with ALS and a lot more about life in general. Looking inward is not a good thing if all you see is darkness. I would rather listen to the birds, feel the breeze, smell the fresh air. Looking outwards is best on days like today.
Wednesday, 25 April 2018
Alone In The Storm
I feel very isolated, very alone much of the time. The only real break from this feeling is when people come to visit, when someone walks through my front door to day hello. I'm not sure why I feel this way so much. I have my phone. I have text messages. I have Facebook. I have Facebook messages. I have e-mail. Yet with all this technology, I am alone.
Part of it has to be the inhumanity of technological communication. The art of conversation is lost in all this clicking and clacking of keys. The warmth of human touch, the messages of body language; none of this comes through, be it over the phone or through the computers. Emojis are a poor attempt at communicating feeling; they don't, they are just another bit of technological clutter on the screen. In the end, even a computer visual contact, such as Skype, lacks the sense of reality inherent in a human visit.
Another part has to be the disease itself, with the many limitations it places on me these days. I can't get out as much, or as easily, as I once did. Therefore I cannot drive this human contact process. It's exhausting, tiring, for me to even go to a movie, let alone to a loud social event. One day out is equal to two days of recovery. So I just stay home, hoping, passively, that someone comes a'calling.
Finally, I think the nature of this illness drives this sense of aloneness, the inability to grasp it in its entirity, the way people who are not PALS can only understand ALS in bits and pieces. There are so many elements within the body impacted by this disease that once you get a handle on one of them, another pops up and steals the focus. That has to be hard for anyone, even PALS, to deal with.
Perhaps the worst thing of all is when a PALS loses his or her ability to speak. Then they are stuck with eye-gaze or other text to speach solutions. Steven Hawkings "voice" became famous, but it was not his voice at all. Voice banking makes a difference by allowing technologically derived speach to be delivered in the original voice. Yet even so, it is not you, it is not your real voice. It is a pale, lonely imitation of what you once might have been, now gone, lost in the storm of ALS.
Part of it has to be the inhumanity of technological communication. The art of conversation is lost in all this clicking and clacking of keys. The warmth of human touch, the messages of body language; none of this comes through, be it over the phone or through the computers. Emojis are a poor attempt at communicating feeling; they don't, they are just another bit of technological clutter on the screen. In the end, even a computer visual contact, such as Skype, lacks the sense of reality inherent in a human visit.
Another part has to be the disease itself, with the many limitations it places on me these days. I can't get out as much, or as easily, as I once did. Therefore I cannot drive this human contact process. It's exhausting, tiring, for me to even go to a movie, let alone to a loud social event. One day out is equal to two days of recovery. So I just stay home, hoping, passively, that someone comes a'calling.
Finally, I think the nature of this illness drives this sense of aloneness, the inability to grasp it in its entirity, the way people who are not PALS can only understand ALS in bits and pieces. There are so many elements within the body impacted by this disease that once you get a handle on one of them, another pops up and steals the focus. That has to be hard for anyone, even PALS, to deal with.
Perhaps the worst thing of all is when a PALS loses his or her ability to speak. Then they are stuck with eye-gaze or other text to speach solutions. Steven Hawkings "voice" became famous, but it was not his voice at all. Voice banking makes a difference by allowing technologically derived speach to be delivered in the original voice. Yet even so, it is not you, it is not your real voice. It is a pale, lonely imitation of what you once might have been, now gone, lost in the storm of ALS.
Tuesday, 24 April 2018
Pain And Exhaustion
I wonder how long I can keep it up, this facade of courage and humour in the face of ALS. There is no other way to put it; this is a horrible disease, I am suffering greatly. Sure, I don't have it as bad as some, yet the other day I found myself wishing I was my neighbour lady down the hall. She has terminal and inoperable lung cancer. She is declining quickly. She will die within a matter of days or weeks. Her suffering will end soon. Mine will not.
It is not just the pain I am going through each day. It is the weakness, the exhaustion, the loss of ability, the indignity of care. There are so many things, both physical and psychological that make living with ALS indecent, something I dearly wish would come to an end, yet am too much of a coward to end it myself. I did not cancel MAID plans so much because I wanted to live yet; it was more because I am afraid of dying. I don't want to die; I don't want to live like this.
Today I went for x-rays and ultrasounds on both shoulders. There is nothing holding your shoulder in place but the muscles and tendons surrounding it. My muscles are very weak, so the shoulder joint is quite literally separating on my each time I use it, especially on the left side, with the right side quickly catching up. Imagine the pain of dislocating your shoulder joint every time you moved it. I'm living on T-3's with codeine these days and asking for something stronger.
This activity, this simple hour of sitting, moving slightly, waiting for pictures to be taken, left me so tired I had to come home to have a two hour nap. Even so I am still tired; I could still sleep, perhaps from now right through until tomorrow. I have done it before. I might even ask my caregiver to put me to bed when she gets here at 6:00 PM.
How tired am I? So tired I don't want to eat the steak I have on the stove, let alone cook it. So tired I don't want to make the Shrimp Ceasar Salad for which I have safe, e-coli free supplies in the fridge. So tired I don't have the energy to even cry, let alone raise myself to feel distress. My brother once said that suffering was part of life, but misery is optional. I'm not so sure anymore.
It is not just the pain I am going through each day. It is the weakness, the exhaustion, the loss of ability, the indignity of care. There are so many things, both physical and psychological that make living with ALS indecent, something I dearly wish would come to an end, yet am too much of a coward to end it myself. I did not cancel MAID plans so much because I wanted to live yet; it was more because I am afraid of dying. I don't want to die; I don't want to live like this.
Today I went for x-rays and ultrasounds on both shoulders. There is nothing holding your shoulder in place but the muscles and tendons surrounding it. My muscles are very weak, so the shoulder joint is quite literally separating on my each time I use it, especially on the left side, with the right side quickly catching up. Imagine the pain of dislocating your shoulder joint every time you moved it. I'm living on T-3's with codeine these days and asking for something stronger.
This activity, this simple hour of sitting, moving slightly, waiting for pictures to be taken, left me so tired I had to come home to have a two hour nap. Even so I am still tired; I could still sleep, perhaps from now right through until tomorrow. I have done it before. I might even ask my caregiver to put me to bed when she gets here at 6:00 PM.
How tired am I? So tired I don't want to eat the steak I have on the stove, let alone cook it. So tired I don't want to make the Shrimp Ceasar Salad for which I have safe, e-coli free supplies in the fridge. So tired I don't have the energy to even cry, let alone raise myself to feel distress. My brother once said that suffering was part of life, but misery is optional. I'm not so sure anymore.
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