Sunday, 23 July 2017

36 Hours Of Sleep

I'm out of bed, finally. I've been in bed since 11:00 PM on Friday. I stayed in bed literally all day yesterday, sleeping. Yesterday evening I sort of woke up, sort of. I didn't have the energy to get out of bed at all. Come 11:00 PM yesterday, after a full 24 hours sleeping on and off, I went back to sleep again.

It was about 8:00 AM when I finally awoke this morning. Even so, I was able to doze off and on until Home Care arrived at 10:30 AM. Sunday is one of my three sleep in days each week, where the Home Care Aide arrives at 10:30 AM instead of 9:00 AM. Even so, all three of my HCA's knows that coming late on the early days is not considered a bad thing. I am always ready to sleep in.

What I was not ready for was my exhaustion of yesterday. There is no explaining it. I've been getting decent nights of sleep lately. I've not been overdoing it in my days. I will admit to having had a bottle and a half of wine two nights running, not that this is an onerous thing for me. All in all, I'm fairly sure that my exhaustion has not been related to something I am doing.

There is the very real possibility that I am fighting another low grade bladder infection. This is how it goes when I'm in this situation. My body is even weaker than usual. I am more tired than usual. I've had little sign of the incontinence which goes with a bladder infection, so I have my doubts there too. I don't want to slap an antibiotic into my system as a preventative; it's another drug I don't need for something unclear in origin.

The best way, perhaps, to deal with something like this is to listen to my body, to rest as it needs rest, to eat as it needs sustenance, to stay hydrated. I'll try getting out for a bit today, to be a bit active. Then, if I am exhausted tomorrow again, I'll go see the doctor, even with the one week lead time for an appointment. Or maybe I'll just go to the hospital again. They can test and treat me right there.                                                      

Friday, 21 July 2017

It's My Birthday

I've waited, intentionally waited, before writing today. You see, today is my birthday. Today I turned 62 years old. Today was a day I never expected to see, never thought would arrive for me. When I was 57 and newly diagnosed with ALS, I would not have given a plug nickle for anything past 60, and not much more for 60 itself. The statistics said it. I had ALS. I had been symptomatic for at least two years. My life expectancy, at best, was 36 months. That's what the neurologist said.

The problem is that life expectancy is all about statistics. My statistic of one has not followed the pattern of the norm. My progression has been slower than expected, causing me to endure this disease for longer than expected. So this birthday is both a marker of an unexpected gift, and an unexpected curse. It seems I will, once again, outlive my money and my plans.

For some people, each and every birthday is something to celebrate. This celebration of birthdays is not something universal, however. Our modern celebrations have more to do with our wealthy society than with any real tradition of celebration. On top of that, a great many cultures celebrate the births of boys while mourning the births of girls. I am fortunate to have been born in a time and place where birthday celebrations happen.

If anyone should be congratulated for this day, it should be my Mom. She is the one who carried me for nine long months, the last two of them deep into the heat of summer. She is the one who delivered me in a hospital room populated by nuns who had never had a child telling her what to do, and a doctor who was really only there for the final event. Birth in the 1950's was fully medicalized, leaving no respect for the woman in charge of delivering herself a child.

I call my Mom on my birthday. I did that today. I thank her for going through those nine months, that tough delivery, and being there for the rest of my life right up until this day. If anyone has a right to be congratulated, it is her. If anyone should be celebrated it is her. All I did on this day was get hauled out of a warm, moist womb into a cold, sterile world, once there to be slapped such that my first utterance was a cry of pain.

So happy birthday to me. I shall celebrate quietly, with a glass of wine and a plate of pasta. I'm not a cake fan, perhaps I might have an ice cream bar. I will watch a movie or two. I will go to bed at an indecent hour. In other words, today will not be all that different than other days. I'll just have completed another orbit around the sun, as so many have done before me, as so many will do after me.

Thursday, 20 July 2017

Upside, Downside

Each morning I awake. From that instant on, my day is filled with ups and downs, both literally and figuratively. There's the sling. Both up and down. This morning there were no events with the sling, which leads me to believe that the last couple of mornings were events driven by my consumption of beer. Will this stop me from drinking beer? Not likely. What I will have to do is ensure I used the toilet before bed on those days when I drink beer.

There are lots of other upsides for each and every day. Here is the upside list. It's longer than what is presented. This blog has to have a certain brevity to it.


  1. I woke up today. I get to see another day of the world go by. I get to enjoy another glass of wine, another meal. I get to feel the sunshine, laugh at something, continue to hope for love.
  2. I got to use my sling without filling my underpants first. There was no mess today. No muss, no fuss. I was clean without needing a shower.
  3. Sam just folded my laundry. It is one less thing for me to do, so today I can focus on making spaghetti sauce with meatballs. I'll have that with rigatoni tonight, likely tomorrow night too.
There are plenty of other upsides. I just wanted to express a few of the good things that start my days. There are also downsides to every day, difficult things which enter my life, things over which I have no control.

  1. I woke up today. It means another day of dealing with pain and struggle. It means I get to witness more loss in my muscles, more challenges. The wine glass is getting heavier. It's getting more difficult to get outside in the sunshine. It's another day in which I will discover disappointment.
  2. My neck is cramping today, making it difficult to hold my head up straight. This would be less of an issue if I had stayed in bed, less of an issue if I simply laid flat for the day.
  3. It's cold outside today. I put shorts on this morning, or rather Sam put shorts on my this morning, thinking I would not be going outside. Now I will either stay indoors, or change to long pants.
You know, I can find both good and bad things in every day. Sometimes the good outweighs the bad. Sometimes the bad outweighs the good. What I know is this. One day I will realize that the downsides have been more than the upsides for a long time. That will be the day I decide. For now, not today. There's plenty of upsides.

Wednesday, 19 July 2017

A Messy Change

I look at changes in the way my body works very closely. I work hard to identify if they are are part of aging, a part of normal life, or a part of ALS. Sometimes it's a part of all three. The last couple of mornings, on transfer from bed to sling, my bowels seems to have felt the need for immediate release. There was nothing I could do to stop it, nothing I could hold. I didn't have the muscles needed. The sling squeezed and forced the necessary openings; stuff came out.

My first thought is beer. For both Monday evening and Tuesday afternoon, beer represented a reasonable portion of my non-dietary intake, Kilkenny Irish Ale on Monday and an Milestones Red Ale on Tuesday. Beer, especially draft beer, seems to make my tummy rumble. Perhaps it is time for me to switch from draft to bottled beer. Perhaps I need the pasteurization.

Then there is the dietary component. Both days consisted of irregular eating. On Monday it was wing night at the pub. Then, after a night out, I came home and ate a half sandwich Kathy had made me earlier in the day along with a small can of smoke oysters. Kathy said she though the oysters might be the culprit. Yesterday I went to a matinee at the movies with Tonny where I consumed a large bag of popcorn. Then I met friends at Milestones for beer. My dinner was ColeSlaw and canned Ravioli. Okay, not my best dietary efforts. Perhaps it was the popcorn.

The worst case scenario, from my perspective, is loss of muscle tone in my perineum. I still have sphincter control; that muscle is not affected by ALS. It's the other muscles "down there", gluteus muscles, abdominal muscles. Those are the ones I need to aid in both the process of holding in and of pushing out. When the sling spreads my cheeks, those muscles are no longer strong enough to come to the aid of the one muscle holding back the mudslide.

It's another thing I will have to learn, another change. My hope is that it is just the beer or food. My fear is that I may have to make another adjustment in my routine, going to the toilet at night as well as in the morning, or just going at night altogether. I wonder what the sling will have to say about that!

Tuesday, 18 July 2017

Tough Tuesdays

While Monday may be one of the best days of my week thanks to the ministrations of Kathy, my HCA, Tuesday is not typically a good start. First of all, on Monday's I get to sleep while Kathy cleans my apartment. I wake up to a nice, clean smelling home. Second, Kathy arrives at 10:30 AM on Monday, but arrives at 9:00 AM on Tuesday. This is a result of an experiment on my part which has become permanent. I wanted to try getting up earlier. Kathy was available and now I don't want to lose her by changing things.

So I live with tough Tuesdays. Today was tougher than most. Last night I went to bed late and slept poorly. I was off to a rough start right away. Then this morning my bowels decided that being in the sling was close enough to being over the toilet. I spoke to them harshly, using all the inappropriate language I could, reminding them that I was still wearing underwear. Alas, all to no avail. By the time I made it to the toilet, I was a shitty mess.

Once again, Kathy help rescue me from this mess, helping me get my underwear off, helping clean up the mess. My bidet spray helped a bunch, as did my shower; it was the clean up of underwear and commode chair where I needed some help. She takes these disasters completely in stride, a part of her daily work, without making me feel bad or helpless or anything like that. She often comes up with good reasons for why these bad things happen to me.

What make this Tuesday even more challenging is that Kathy is now off for two weeks, on holidays, headed to see her family in Edmonton, then in Radium. I have this deep and selfish worry about who will take over for her, who will fill in the gaps next Monday and Tuesday. On top of this, Olga is away this weekend, on vacation with her husband and children. So I have holiday fill ins for Friday, Saturday, Sunday, Monday and Tuesday. I wonder what I will eat!

Monday, 17 July 2017

Welcome To My Home

A number of people have asked, over time, if I could talk about the layout of my apartment, or perhaps do a video tour. I've done just that. The video today is about 8 minutes long and covers my whole apartment, from the dining table where the magic happens to the Door of Doom protecting the wine rack. I expect there will be questions about what is what. Feel free to ask away.

Welcome to my home.

Sunday, 16 July 2017

The Price of Pride

I am a fiercely independent man, especially since I left my wife. When that happened, I promised myself I would never again subjugate myself in trade for some falsely perceived benefit, nor agree or conciliate when I differed in position or attitude. I committed to being me, all the time. It was time for me to say what I thought, regardless of outcome; to be who I was, regardless of response.

Of course this attitude has its downside. I have, more than once, said things which set off a firestorm. My refusal to give up a female friend let to the breakdown of my last relationship. My willingness to express my attitude has most certainly upset more than one person. Yet I have found that those who like me, really like me; and those who aren't sure become certain in a hurry. It saves time, something that I don't have a lot of.

Yesterday is a good example of the price I pay for maintaining freedom. I declared that I would not ask for help, at least for a while. Asking for help puts the person asking at the will of the person giving; it creates a dependent subjugation. These days my emotions are fragile enough that I just don't want that in my life. If you offer, I will accept. If there is no offer, then I will have to decide how I can do it myself, or if I need to do it at all.

Costco. I went yesterday. By myself. I took the bus there, shopped, and called a wheelchair cab for a ride home using my Access Calgary Extra card. That card subsidises cab rides up to $56 a month as long as I pay the meter charge of $3.60. Yesterday the ride was $21.90; I paid $3.60, which is essentially bus fare, something I pay with any Access Calgary ride.

Getting there was fairly easy, just one transfer. Shopping had its challenges with lifting heavy things onto my lap and negotiating the crowds in my power wheelchair. Checkout was a breeze; the checked me out at the service counter thanks to my wheelchair. Getting home simply meant waiting for the cab. Once I was home, however, the real work began.

First, it was getting the boxes of groceries up to my apartment. I managed it, barely, in one trip. It took some doing to balance two large boxes on my lap, holding them with my left arm as I drove with my right hand. I made it, thankfully, with no loss of contents. Unfortunately I missed one of the turns just a bit, tearing off my side pack in the process. It's another thing to fix; I need a sewing machine. I am fairly sure my HCA can help with this, or the ALS Society. It will happen.

Putting the groceries away was the real challenge. Having taken them down from the shelves or out of the bins at Costco, I now had to put them high up on shelves or into the freezer here at home. I didn't realize how much it exhausted me until I slept in today. I ended up with 16 hours of sleep!

I need to be aware of my "one thing per day" rule. Doing laundry is one thing. Folding and putting away is another. Going to Costco is one thing. Putting stuff away is another. The freezer stuff has to go away, but most of the rest could have waited until today when I had help from an HCA. I wore myself out, needlessly. Help was on the way, if I had bothered to wait.

Today I am doing laundry. I am committed to not folding it tonight. I know Kathy will do that tomorrow. In fact she would do the laundry too, if I asked. I just don't want to ask anymore. The price for that is this. Exhaustion. Everything has its price, even my pride and independence.