I'm struggling with a nasty cold today. Yesterday too. For most people, it would be a run-of-the-mill kind of cold; headache, cough, runny nose. For me, with my compromised immune system and weakened respiratory system, any cold is a nasty cold, any congestion is serious and dangerous. This cold was bad right up until a couple of hours ago, but seems to be breaking now. I'm really quite surprised at how quickly the corner turned. At 8:00 AM, I was thinking about going to the hospital. Now, three hours later, I'm planning my Open House for tomorrow.
I've always been a quick recovery; being sick usually meant a day or so down, then up and running again. This time the timing was pretty much the same, but the process was a whole lot scarier. Last night my chest felt like it had a cement block on it. I could breathe, but I had a truly unproductive cough and poor respiration. This morning I felt much the same, yet now that sense of pressure is gone. My cough is still pretty weak, but I'm doing better.
One of the tools which has helped me is my Lung Volume Recruitment bag. Essentially the LVR is an air bag with a breathing tube. I breath in, then pump the air bag to push more air into my lungs. This has the effect of giving me a lung full of air to expel in a cough. It works. I cough better. I push out phlegm better. There's less chance of pneumonia.
There is another thing which has made my life better over the last couple of days; Katherine. She came over yesterday when I was feeling bad, stayed with me all night to make sure I was okay, and is still here now, doing laundry and generally taking care of me. While we are no longer a couple, she is clearly dedicated to me, and I to her. I'm not sure what I would have done without her here. Most likely I would have ended up in hospital. It's impossible for me to properly express the level of gratitude I have for all she does for me.
Wednesday, 21 December 2016
Tuesday, 20 December 2016
Coughing
I'm not feeling all that well today. I woke up last night at about 2:00 AM with a tickle in the back of my throat. I started coughing. I wasn't able to settle until about 6:00 AM. Even now I have a slight cough, along with the constant urge to clear my throat. I truly hope this is something mild and passing; I definitely don't want to get sick this week.
Colds and other respiratory infections scare the daylights out of me. It is not uncommon for PALS to come down with a slight cold, yet end up in hospital with pneumonia. This is because we have what doctors call an "unproductive cough". We cough, but we don't have enough expulsive power in that cough to push out moisture collecting in our bronchia and lungs. So instead of coughing out the phlegm, it builds up no matter how hard we try.
It might be useful to note here that respiratory insufficiency is how the vast majority of PALS die. More plainly put, we can't get enough air when we breathe in, and we can't expel enough CO2 when we breath out. We don't actually die from respiratory failure; our lungs work just fine. It's that our muscles which do the breathing for us fail to do what they are supposed to do.
Pneumonia is another common issue and cause of death for PALS. In the last couple of weeks, three PALS I know online have gone into hospital with pneumonia. Once again, it's because we can't cough out the liquid in our lungs. Of those three, one did not recover. After much difficulty, the other two survived to fight another day.
There are machines to help with these problems, things like cough assist machines which use rapid reversing airflow to simulate a cough, and Bi-PAP breathing machines to aid in delivering air during breathing and, equally importantly, forcing out CO2 from the lungs. Then there is the classic tracheotomy, where a machine completely replaces the breathing function altogether. It's mechanical intervention to extend life. I'm not sure if it makes it any better.
Last night, at 2:00 AM, when I started to cough, I thought to myself "Here we go." This slow slide will not be a single event until the big one. It will be series of uncomfortable, intermittent breathing issues, ranging from a weak cough to not getting enough air. This actually started a while ago, the whole running out of breath thing. This is just the first time I've had a cough to go with it.
Colds and other respiratory infections scare the daylights out of me. It is not uncommon for PALS to come down with a slight cold, yet end up in hospital with pneumonia. This is because we have what doctors call an "unproductive cough". We cough, but we don't have enough expulsive power in that cough to push out moisture collecting in our bronchia and lungs. So instead of coughing out the phlegm, it builds up no matter how hard we try.
It might be useful to note here that respiratory insufficiency is how the vast majority of PALS die. More plainly put, we can't get enough air when we breathe in, and we can't expel enough CO2 when we breath out. We don't actually die from respiratory failure; our lungs work just fine. It's that our muscles which do the breathing for us fail to do what they are supposed to do.
Pneumonia is another common issue and cause of death for PALS. In the last couple of weeks, three PALS I know online have gone into hospital with pneumonia. Once again, it's because we can't cough out the liquid in our lungs. Of those three, one did not recover. After much difficulty, the other two survived to fight another day.
There are machines to help with these problems, things like cough assist machines which use rapid reversing airflow to simulate a cough, and Bi-PAP breathing machines to aid in delivering air during breathing and, equally importantly, forcing out CO2 from the lungs. Then there is the classic tracheotomy, where a machine completely replaces the breathing function altogether. It's mechanical intervention to extend life. I'm not sure if it makes it any better.
Last night, at 2:00 AM, when I started to cough, I thought to myself "Here we go." This slow slide will not be a single event until the big one. It will be series of uncomfortable, intermittent breathing issues, ranging from a weak cough to not getting enough air. This actually started a while ago, the whole running out of breath thing. This is just the first time I've had a cough to go with it.
Monday, 19 December 2016
Quiet And Calm
It's a quiet day, another "calm before the storm" kind of day. The party is over. My apartment is cleaned up. I have today and tomorrow to rest up, then the game is on again. Wednesday, Kate will come over the help bake cookies. Thursday is my Open House for my neighbours. Friday is a dinner for Katherine's friends. Saturday is Christamas Eve afternoon with Kate, Phil and his boys. Then comes Sunday, Christmas Day. On that day I will be home alone with my thoughts.
Since it's Monday today, here is a video blog. I've taken David's advice and put the video on YouTube with a link to it here in my blog. The only thing I don't like about this setup is that when the video is complete, YouTube shows other videos for you to watch. I don't mind that so much, but I don't get to say what those videos might be. So forgive me if YouTube shows you something you would rather not see. I promise; I didn't do it.
Since it's Monday today, here is a video blog. I've taken David's advice and put the video on YouTube with a link to it here in my blog. The only thing I don't like about this setup is that when the video is complete, YouTube shows other videos for you to watch. I don't mind that so much, but I don't get to say what those videos might be. So forgive me if YouTube shows you something you would rather not see. I promise; I didn't do it.
Sunday, 18 December 2016
Another Great Christmas Party
I am in recovery, recovery from last night's party. It went so well, better than I could have hoped, yet I spent all of the evening ensconced on my couch, wheelchair put well away from me. Perhaps that is why it went so well; I got out of the way and let things happen. My friends got busy and made things happen. I admitted my emotional and physical limitations. My friends provided me with so much emotional and physical support. It all worked out the way it should.
Whenever I have one of these parties, especially the large parties with over 20 people, I worry about three things. I worry that people will not show up. I worry that there won't be enough food. I worry that people won't have a good time. All of this is irrational on my part. I've never had a party where lots of people didn't show up. There's always one or two who can't make it for whatever reason, just as there are people who I thought wouldn't make it but do. People come. That's what matters.
The whole "not enough food" thing is equally irrational. I forever make too much food on my own. Inevitably people show up with delicious side dishes and treats. The tables are always overflowing with salads, main course dishes, pastries, desserts, pies, and every other thing you can imagine. Leftovers crowd my fridge the day after; I don't have to cook for at least a week if I don't want to. There is always lots of food, yet I always feel I should have made one more salad, one more vegetable plate, one more dessert dish. That's just the way I am.
As to having fun, I have never seen a livelier, more engaging group of people. When we get together, it's so much fun it's silly. When we get together in a large group, there are small parties within the party, people having side or central conversations, people engaged with each other, laughing, enjoying the food, the wine, the company. Of course we have fun. That's how all of this started.
So I find myself today really uplifted by it all, at the same time as I am physically beaten down by it all. I am exhausted. I will be in recovery for a few days. I've noticed the changes year after year as my weakness grows, as ALS takes over more and more of me. This year was the first time I actually let it all go, gave up and submitted. It worked out so well I might try it again, if there is an "again". I hope so. I also know where I am and where I am going. I'm in no hurry to get there; I want more parties like last night.
Whenever I have one of these parties, especially the large parties with over 20 people, I worry about three things. I worry that people will not show up. I worry that there won't be enough food. I worry that people won't have a good time. All of this is irrational on my part. I've never had a party where lots of people didn't show up. There's always one or two who can't make it for whatever reason, just as there are people who I thought wouldn't make it but do. People come. That's what matters.
The whole "not enough food" thing is equally irrational. I forever make too much food on my own. Inevitably people show up with delicious side dishes and treats. The tables are always overflowing with salads, main course dishes, pastries, desserts, pies, and every other thing you can imagine. Leftovers crowd my fridge the day after; I don't have to cook for at least a week if I don't want to. There is always lots of food, yet I always feel I should have made one more salad, one more vegetable plate, one more dessert dish. That's just the way I am.
As to having fun, I have never seen a livelier, more engaging group of people. When we get together, it's so much fun it's silly. When we get together in a large group, there are small parties within the party, people having side or central conversations, people engaged with each other, laughing, enjoying the food, the wine, the company. Of course we have fun. That's how all of this started.
So I find myself today really uplifted by it all, at the same time as I am physically beaten down by it all. I am exhausted. I will be in recovery for a few days. I've noticed the changes year after year as my weakness grows, as ALS takes over more and more of me. This year was the first time I actually let it all go, gave up and submitted. It worked out so well I might try it again, if there is an "again". I hope so. I also know where I am and where I am going. I'm in no hurry to get there; I want more parties like last night.
Saturday, 17 December 2016
Morning Routine
I have a routine each morning, a routine that stays in place no matter where I am, whether or not I have home care, no matter what else is happening. This routine is critical to me. It ensures that I accomplish all I need to accomplish each morning. Without the routine I forget things, like taking my pills or brushing my teeth or putting on pants. So I stick with my morning routine.
I wake up. I lie in bed for about a half hour building the energy and courage to face the day. I transfer to my commode chair, a source of problems I will later divulge. I take my pills. I go into the bathroom carrying whatever jug or urine container I used from the night before. I clean and sanitize said container. If it is a jug, I leave the sanitizing solution in it and put it aside. If it is a bag, I drain it and hang it in the shower to dry. Also, while the water is running and after the container is clean, I will brush my teeth. I'm in front of the sink anyways. After all that, I go to the toilet. Once complete there, I wash my hands thoroughly and head into my room to get dressed.
There are, however, challenges to this routine as my core muscles fail me. The commode chair is basically a toilet seat one wheels, one which spreads your butt cheeks the moment you sit on it. Now think of what your bowels say to you once you are seated with your butt cheeks spread. Yes, that. Over the last year or so I have been able to manage that urgency, keeping my bathroom routine in place, ensuring I get things done. However as my core muscle weaken, maintaining that clench and clutch is becoming increasingly difficult, especially when something within me needs to depart urgently.
This morning was one of those mornings. I was following my routine. I was sitting in my commode chair. I was cleaning my container. Then I lost focus. Do you know that feeling you get when you know something uncomfortable is going to happen knowing for a certainty there is nothing you can do about it? I had that feeling. It happened.
I rapidly broke my routine and rolled over to the toilet. If this had been a minor, controllable event, I might have finished brushing my teeth. Not this time. My innards were expelling with the force of liquid rocket fuel. My muscles could not contract enough to hold back the flow. So I just rolled over the toilet and wondered what to do next. You see, I was still wearing my underwear.
This time, and there have been other times, I just said to hell with it. I did not want to smear the contents of my underwear all over me as I dragged them off. So I just got my small pair of scissors from the bathroom shelf beside me, and I cut my underwear off, mostly. Remember, in all of this I am still sitting, still unable to lift my butt cheeks up enough to clear the area. So I pushed what I could of them beneath me, and turned on the bidet spray. I cleaned myself, ragged remnants and all. It wasn't pretty. It wasn't perfect. Hell, it wasn't even all that clean. So I went into the shower afterwards and cleaned myself thoroughly.
You know, sometimes a pair of underwear are just not worth it. Sometimes you just have to give it all up and let it all go. Sometimes cutting away the damage is the best way to resolve a difficult situation. But after it all, I still forgot to brush my teeth. Dammit! Morning routine!
I wake up. I lie in bed for about a half hour building the energy and courage to face the day. I transfer to my commode chair, a source of problems I will later divulge. I take my pills. I go into the bathroom carrying whatever jug or urine container I used from the night before. I clean and sanitize said container. If it is a jug, I leave the sanitizing solution in it and put it aside. If it is a bag, I drain it and hang it in the shower to dry. Also, while the water is running and after the container is clean, I will brush my teeth. I'm in front of the sink anyways. After all that, I go to the toilet. Once complete there, I wash my hands thoroughly and head into my room to get dressed.
There are, however, challenges to this routine as my core muscles fail me. The commode chair is basically a toilet seat one wheels, one which spreads your butt cheeks the moment you sit on it. Now think of what your bowels say to you once you are seated with your butt cheeks spread. Yes, that. Over the last year or so I have been able to manage that urgency, keeping my bathroom routine in place, ensuring I get things done. However as my core muscle weaken, maintaining that clench and clutch is becoming increasingly difficult, especially when something within me needs to depart urgently.
This morning was one of those mornings. I was following my routine. I was sitting in my commode chair. I was cleaning my container. Then I lost focus. Do you know that feeling you get when you know something uncomfortable is going to happen knowing for a certainty there is nothing you can do about it? I had that feeling. It happened.
I rapidly broke my routine and rolled over to the toilet. If this had been a minor, controllable event, I might have finished brushing my teeth. Not this time. My innards were expelling with the force of liquid rocket fuel. My muscles could not contract enough to hold back the flow. So I just rolled over the toilet and wondered what to do next. You see, I was still wearing my underwear.
This time, and there have been other times, I just said to hell with it. I did not want to smear the contents of my underwear all over me as I dragged them off. So I just got my small pair of scissors from the bathroom shelf beside me, and I cut my underwear off, mostly. Remember, in all of this I am still sitting, still unable to lift my butt cheeks up enough to clear the area. So I pushed what I could of them beneath me, and turned on the bidet spray. I cleaned myself, ragged remnants and all. It wasn't pretty. It wasn't perfect. Hell, it wasn't even all that clean. So I went into the shower afterwards and cleaned myself thoroughly.
You know, sometimes a pair of underwear are just not worth it. Sometimes you just have to give it all up and let it all go. Sometimes cutting away the damage is the best way to resolve a difficult situation. But after it all, I still forgot to brush my teeth. Dammit! Morning routine!
Friday, 16 December 2016
Weekend Anxiety
It's going to be one of those days. I feel really weak today, sufficiently weak that I needed help getting dressed. I get days like these. It would be nice if I could ascribe these days to something, perhaps lack of sleep, or the rum and eggnog, or doing too much yesterday. I can't. That's the thing, these days just come along every once in a while. Unfortunately they are often precursors to a change, and not in a good way.
Then there are the other things that are going to make this a difficult day. My truck is in the shop; I'm going to call them in a minute to see if they have figured out what is causing the battery to drain. Since I have no transport, this is, of course, the day I realize I am almost out of catheter supplies. I can call the pharmacy and they will deliver the supplied, but there are a few other things I need and have to pay for, like a new grabby stick and some additional catheter straps, so I wanted to go into the shop.
There's also this internal screaming going on inside my head, telling me I have to get ready for my Christmas party tomorrow. Of course I don't. It's a Christmas Potluck. Kay and Walter are bringing the turkey. I already have a Bean Salad at the ready, plus Cole Slaw fixings in the fridge. I have nothing to worry about, except worry itself. My inner anxiety is showing. I have to make more food.
Last night I made some Mince Tarts. I cheat with these things. I buy the Mince Meat at Safeway, then add a couple of shots of Spice Rum into the mix. The hardest part for me is rolling out the dough, especially with a broken rolling pin. So that's another thing I want to do today, go to Home Outfitters to get a pastry mat and rolling pin. Both of mine have been damaged over the last few days.
So, in summary; I don't have my truck, I'm worried about the repair costs, I'm feeling very weak and worried about decline, I am anxious about my party tomorrow, I want to do some baking and need equipment, and I have a bottle of Spiced Rum sitting in front of me, along with Egg Nog in the fridge. I'm pretty sure things will work out all right, even if I pee in my pants every now and again this weekend.
Then there are the other things that are going to make this a difficult day. My truck is in the shop; I'm going to call them in a minute to see if they have figured out what is causing the battery to drain. Since I have no transport, this is, of course, the day I realize I am almost out of catheter supplies. I can call the pharmacy and they will deliver the supplied, but there are a few other things I need and have to pay for, like a new grabby stick and some additional catheter straps, so I wanted to go into the shop.
There's also this internal screaming going on inside my head, telling me I have to get ready for my Christmas party tomorrow. Of course I don't. It's a Christmas Potluck. Kay and Walter are bringing the turkey. I already have a Bean Salad at the ready, plus Cole Slaw fixings in the fridge. I have nothing to worry about, except worry itself. My inner anxiety is showing. I have to make more food.
Last night I made some Mince Tarts. I cheat with these things. I buy the Mince Meat at Safeway, then add a couple of shots of Spice Rum into the mix. The hardest part for me is rolling out the dough, especially with a broken rolling pin. So that's another thing I want to do today, go to Home Outfitters to get a pastry mat and rolling pin. Both of mine have been damaged over the last few days.
So, in summary; I don't have my truck, I'm worried about the repair costs, I'm feeling very weak and worried about decline, I am anxious about my party tomorrow, I want to do some baking and need equipment, and I have a bottle of Spiced Rum sitting in front of me, along with Egg Nog in the fridge. I'm pretty sure things will work out all right, even if I pee in my pants every now and again this weekend.
Thursday, 15 December 2016
More Truck Trouble, Again
I have to go out in a few minutes. I am picking up my friend Emma and driving her around so she can do some errands. Emma has a brain injury and, while recovering strongly in so many ways, has trouble with peripheral vision and cannot get a driver's license. I understand her frustration. I am more than just a little happy to be able to help her.
Unfortunately my truck has been problematic these days. The battery keeps dying, even though it is a brand new battery. Unlike me, you can just recharge the truck battery. My battery just keeps on dying and dying and dying, an Energizer bunny in reverse. The trouble all started with the camping trip to Jim's place outside of Edmonton when I inadvertently left the lift seat engaged overnight.
So I have finally decided to bite the bullet and pay the $175 for the analysis of what the heck is causing my truck battery to die. This is not your normal cold weather death; my truck is parked indoors. Nor is it because I don't drive often enough, although that is a factor. In the past I was driving every other day or so. Now getting into and out of the truck is increasingly problematic, so I only drive once or twice a week at best. That means the truck sits for three or four days, sometimes even 10 days without being run.
Even at 10 days, the battery should be okay. Modern vehicles all have computers in them, computers that run all the time. This will wear any uncharged battery down completely over two or three weeks. My run time gap is nothing like that, so the battery should be fine. So something from that fateful weekend at Jim's is broken, something in the truck's electrical system is draining the battery. My greatest fear is that it will be something with my lift system. I sure hope not. That is the only thing that makes the truck useful to me.
Unfortunately my truck has been problematic these days. The battery keeps dying, even though it is a brand new battery. Unlike me, you can just recharge the truck battery. My battery just keeps on dying and dying and dying, an Energizer bunny in reverse. The trouble all started with the camping trip to Jim's place outside of Edmonton when I inadvertently left the lift seat engaged overnight.
So I have finally decided to bite the bullet and pay the $175 for the analysis of what the heck is causing my truck battery to die. This is not your normal cold weather death; my truck is parked indoors. Nor is it because I don't drive often enough, although that is a factor. In the past I was driving every other day or so. Now getting into and out of the truck is increasingly problematic, so I only drive once or twice a week at best. That means the truck sits for three or four days, sometimes even 10 days without being run.
Even at 10 days, the battery should be okay. Modern vehicles all have computers in them, computers that run all the time. This will wear any uncharged battery down completely over two or three weeks. My run time gap is nothing like that, so the battery should be fine. So something from that fateful weekend at Jim's is broken, something in the truck's electrical system is draining the battery. My greatest fear is that it will be something with my lift system. I sure hope not. That is the only thing that makes the truck useful to me.
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