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.

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.

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.

Monday, 23 April 2018

Plug It In, Man

I went out today. My war with technology continues. The first place I went was Memory Express, a local computer shop which will repair my laptop. Their estimate for repair is around $125, assuming they don't have to put in a new keyboard. Instead I bought an inexpensive extrernal keyboard for $30. It's not a perfect solution, but it costs less and means I don't lose my laptop for a week or so while it is in being repaired. The repair will have to wait until I can afford it.

When I said my war with technology continues, I meant more than my laptop. My power wheelchair had its moment in the sun today, both literally and figuratively. Before getting too deep into the story, you need to know a bit about the wiring and the joystick control module on my chair. The module is connected to the power system and sends signals to the wheels via a wiring harness. This harness is connected by way of a plug, connected by a short extension from the joystick module. This plug is not well designed and can come easily disconnected by the simple expedient of rubbing against a door jamb.

So I went out today. It is a nice day here. The sun is shining. The birds are singing. The snow is melting. All is right with the spring time world of Calgary. I got on the bus and went to the aforementioned computer shop. I rolled my way home rather than catch the bus. The voyage was uneventful, until I came through the garage and into the elevator foyer, or at least part way into the elevator foyer. I misjudged the edge, and brushed the aforementioned connection against the door jam. It disconnected. I came to a full stop.

Normally in this kind of situation I would reach down, grab the connection end left dangling, and reconnect the module. This situation did not play out that way. The door I was going through was a heavy metal fire door with an auto-closing piston. I was unable to reach down beside myself because I was too weak to push the door open enoujgh to do the reaching.

I was well and truly stuck. So I called one of the many people I have on my list of emergency helpers, this time the maintenance man for our condo complex. He was across town on business, but fortunately the elevator servicemen were in the complex doing maintenance on the elevators. He asked them to come help me. After what seemed like hours of waiting, they arrived. They disconnected the lock rods to allow the chair to roll freely. They pushed me forwards all of three feet, at which point I could grab the cord. I connected myself. All was well.

It reminds me of the many times I instructed technicians in the fine art of troubleshooting various bits of technology. First, is it plugged in? Second, is it switched on? Third, is it connected to the thing it should be connected to? My power wheelchair met all three conditions. I went home.

Sunday, 22 April 2018

The Spirit Of Fonzi

It's been a tough week for me and technology. It goes like that, some good days and some bad days. A lot of my technology failures arise directly from my loss of arm strength. I've managed to break the touch screen on my tablet, there is some sort of problem with the joystick on my power  wheelchair, and this morning my HCA spilled the smallest drop of water you can imagine on my laptop keyboard causing one of the keys to stick.

The tablet problem was pure and simple ALS. I was in bed and wanted to watch something on Netflix. So, as I have habitually done for a few years now, I shifted sideways on my bed as much as I could, then reached out to grab my tablet. It was a reach too far for my weakened left arm. I grabbed my tablet, which promptly slipped from my left hand, tumbling to the floor. There was nothing I could do. I left it there until the next morning when my HCA picked it up for me. I opened it to discover the touch screen was broken. Interestingly enough, the keyboard and mouse are fine, but my touch screen no longer responds to touch.

Next came the joystick on my power wheelchair. For no discernable reason the joystick goes into an error mode, wherein it stops working completely. Fortunately I discovered this on a work day while I was at home. The service technician showed up in about 30 minutes with a replacement joystick module. Alas, the same thing happened a few days later. Once again it was a work day. Once agaain the technician showed up very quickly, this time with a computer module to test various parts and pieces.

The interesting thing in both these cases was that the error would come and go, seemingly randomly, seemingly with no apparent cause. Then it happened this morning, not a weekday, not a workday. There I was stuck in my chair at my kitchen table. I sent the appropriate SOS to my ALS Society case worker. Then I remembered my Dad's advice. If at first you don't succeed, use force. I smacked the joystick module on the side, rather like Fonzi smacking the juke box on Happy Days. It worked!

Alas the situation with my laptop is not so fortunate. The drip of water on the keyboard seems to have shorted one key such that it is on all the time. This key repeats endlessly, right in the log in box for Windows. Thus I cannot log in to my laptop. I hit all the keys with a moderate degree of force, hoping Fonzi would once again appear in spirit. This time he let me down.

So here I am, writing this blog post on my non-touch screen tiny tablet, contemplating the costs of repairing both this table and my laptop. I thing I will forget about the tablet. I can use it the way it is. I will take my laptop to a local computer store early next week, depending on timing, and use this tablet all week for blog posts. That is, as long as the Fonzi approach continues to keep my joystick working.

Saturday, 21 April 2018

Today Was A Good Day

I was wondering what to write about today. David was just leaving after helping me with stuff all afternoon. I said to him "Today was a good day". He said "Write that."

That is all.

Friday, 20 April 2018

Moving Furniture

It's going to be a busy evening around here tonight. There are a couple of strong young men coming to take away my old freezer. A friend of one of my caregivers wants it; these fellows are her nephew and a friend. They are supposed to be here now, so I suspect they will be here shortly. Once the freezer is out, I want to mop that area of floor well. It's been a while.

Then there is the new cabinet that's going in the corner where the freezer used to be. It's smaller, lower, and much more functional. I will be able to put my printers on it, clearing more room in the living room. It has cupboards and shelves, so I can put away my paperwork. It even has space for four wine bottles down the middle, not that I need space for more wine. But perhaps the best part is that it has two drawers in it. So finally I get my own, real junk drawer, something I have never had here in this apartment.

The real question is what "else" should go in the cabinet. I will only need one side for my paperwork and filing. The other side could be paper storage, or perhaps office tools and supplies. It might even do for breakfast cereal now that the top of the freezer is gone. My other options around cereal are to eat my way through it and buy no more, since the cereal was mostly for Kate; or to store it on top of the fridge, in which case I would have to do something with the stuff already up there. Fortunately this is not a decision I have to make right away. I like decisions I can defer; it plays to my naturally procrastionationist nature.

The biggest challenge of the evening will be the assembly of the new cabinet. As with almost all furniture these days, it is designed for flat-pack shipping, allowing lower shipping costs and ease of online purchase. I did purchase this online, perhaps the largest item outside of airfair and hotels I have ever purchased over the Internet. So that's one more thing off the list before I die.

So now I wait for the moving crew. Then, construction begins. I likely won't get it done before my friend arrives to help. I can live with that. Help is a good thing.