Friday, 31 August 2018

Techie Me

I woke up early today, at around 6:00 AM, filled with anxiety, shaking from it. I tried to calm myself, knowing full well that a Zopiclone would take some time to work, ending up with me sleeping until well into the afternoon. As it happened, I did that anyway, through the demands of a nap starting shortly after home care got me out of bed. Some days there just ain't no winning.

Once I finally got my act in gear, I started a bit of a technology. I wanted to create a "Help Me" list, the purpose of which would be to list all kinds of the little things which I need help with whenever somebody visits. As I get increasingly weaker, I have to ask for help constantly, creating a real nuisance for visitor. Instead, I am creating this two part list, one part with "one-off" tasks, the other part with continual tasks.

For example, setting up the power bar behind my night table is a one-off task once it's done, it's done for good, assuming nothing goes wrong with it in the future. On the other hand, going to Safeway with me to help me shop, or cooking dinner for me with leftovers, or taking me out to a restaurant are all things which can happen repeatedly, improving my quality of life directly with each task.

You might think this would be a simple thing. Were I to use low technology tools, it would have. However I wanted to test the list functions of Google Home and Google Assistant, but talking to my Google Home Mini. This meant some configuration of my lists, along with developing an understanding of how the list might be exported into a printable document. Google expects that you will only access your lists online, providing no export or print functionality other than printing the whole page in one go.

After a lengthy period of research and experimentation, I ended up with a rather poor workaround. I simply printed the web page to a pdf, then opened that pdf in Word, converting it from the pdf format to an editable Word format. Now all I have to do is clean the list up and add my own commentary.

There are other ways to do this kind of thing, such as an app tool called If This, Then That. I took a look at it today, but my objective was to use native apps as much as possible. I might look at these other apps eventually, but for now I already have my list. That's what I really wanted anyways.

Thursday, 30 August 2018

A Beautiful Deltoid

I was on the bus today working my way back from the doctor's office. I went to see about a nasty little cut on my right big toe; it seems to be getting infected. Regardless it's the bus ride that was important to me today. I saw something and it struck me as I was sitting on the bus. There was this young lady walking across the parking lot and I was absolutely taken by, of all things, her shoulder muscles.

These well defined deltoids of hers moved with this firm fluidity, the kind of muscle movement that only comes from that combination of exercise and good health. As she walked along the parking lot, I was taken by the natural rhythm of movement, both in her walk and in that shoulder muscle. It bulged, not with the grotesque shape of a body builder, but more with a graceful form of perhaps a dancer or rower. It showed all the right signs of exercise and fitness, unfortunately the kinds of things I no longer see in myself.

I guess that's what really struck me about seeing the fluid movement of this muscle on her shoulder. It was the realization that I haven't had that for a long time my muscles. I will never again show that kind of wonderful grace, that reliability and confidence of movement. I will never again have a muscle that is formed through the good grace of exercise and a life of activity. Never again will I grip a line crossing the sailboat hull and see the firmness of my shoulder and arm muscles spring to life, filled with both adrenaline and the natural strength that only activity can bring. Never again will I trod firmly across the forest floor, certain of my gait, confident that I can handle the uneven, treacherousness of rubble and branch covering my path.

It is that powerful combination of youth and health the forms those kinds of muscles, allowing your body to carry that inner conviction of ability for years afterwards. I had this kind of strength right up until ALS stole it from me. Now I miss the opportunity. I miss the chance to move my muscles like that. I miss that feeling of inbound native strength and knowing that it's there when I need it. ALS has taken that from me too, the muscle as well as that feeling. I want it back.

Wednesday, 29 August 2018

Priorities These Days

Priorities. I have to be increasingly select in the things I do these days, setting priorities, focusing on what really matters versus what is less important. I only have a small amount of energy most days; some are better than others, some days I have no energy at all. Part of this contribution to energy loss are my exercises. They exhaust me, yet they are a priority. Without them my muscles will shrink, seizing up completely, making my limbs rigid in their paralysis.

Exercise mornings take at least an hour longer than non-exercise mornings. Exercise mornings are also shower mornings. So every Monday, Wednesday, and Friday I find myself working with homecare until 1:30 pm or so. After that, I need a rest, usually until about 3:30 pm, sometimes all the way through until 5:00 pm, at which time my afternoon HCA visit begins. These days, since I have lost so much ability in the kitchen, that afternoon visit turns into meal preparation, or at least ingredient retrieval.

Eating is a priority. It takes priority over picking up the bits and pieces I drop all over the floor on a typical day. Yet sleeping often takes priority over eating. On days like today I would just as soon skip an evening meal, taking the time instead to rest, perhaps nap, or like last night, going to bed early. I am not sure if I really have any priorities beyond those two these days. It's all I seem capable of, unless I have help, someone to encourage, someone to energize me.

It is sad to say that most of my days these days are spent watching something on Netflix or sleeping in my wheelchair. I lack the energy or enthusiasm for something as simple as going across the street to Safeway. Grocery shopping supports my priority of eating, yet it is not a priority in and of itself. I seem to get what I need somehow; others go shopping for me or I do without. Sometimes others take me shopping, so I can just rest at home.

So I guess I really am stripped bare of things to do. Eating, sleeping, drinking; these are my only true requirements. Even my bodily functions are left to diapers and catheters. I just don't worry about them anymore. I don't set time aside for them; they are not a priority. I wish I had more, or at least someone to help me get enthused about things. But that's another story, perhaps for tomorrow.

Tuesday, 28 August 2018

At The Kitchen Table

Yesterday was one of those full and busy kinds of days, the kind where I was exhausted by the end of things. It started with the usual stuff, then exercises followed by homemaking, Anne dropped by during the process, visiting until all was complete. Then Brad showed up so we could go to Costco. By the time we were done at Costco and back to my apartment it was 5:00 pm.

That's when things started to get interesting. While we were at Costco, the front tire on my power wheelchair "went flat". This is in quotes because the front tire of my wheelchair is supposed to be solid core. How can that go flat? I don't know, except it seems to have done just that. So we limped our way home, or rather I went slowly to the van, then from the van to my apartment, wherein I parked my PWC with me on board and called the ALS Society. Unfortunately it was too late in the day for them to come to effect a repair. So the technician is headed here at about 3:00 PM today.

In the meantime I am settled into my manual chair. It's been a long time since I've used this chair, so I've forgotten how different it is from the power chair. It is, of course, a smaller chair, thus I sit more frontwards in the chair, depending more on my limited back and core strength to keep my vertical. I'm leaning on the kitchen table to help with that; I suspect I won't move much from here over the next few hours.

This chair also fits lower at the kitchen table. This is both a plus and a minus. The height of this chair provides a more natural sitting position, putting me in a place where it is actually easier to sit and type. It also makes it easier for me to drink from a straw in my water mug without having to lift the mug at all. Were it not for the extra effort needed to stay upright in this chair as well as the work in moving about, I would say I prefer this to my power chair. But back support and mobility are a requirement, so I'll have to stay with the power chair. At least I will stay with it once it is fixed. Until then, my kitchen table will be my home.

Sunday, 26 August 2018

A Trifle; A Full Day Of Work

One of the things I learned about myself after leaving my now ex-wife was that I am not a messy person, at least within my home. I will admit that my boat was often a mess, what with the various projects I was forever working on. At home, however, I like a neat home, a tidy home. I like it when things are in their place. I bugs me when they are not in their place, even moreso when I am unable to put them in their place.

Things left laying about bother me enough that, just now, I stopped writing this post to put some things away which were on the ledge between my kitchen and entryway. The problem is that as I put them away, I noticed a couple more which I have to remember to deal with later. Remembering them is the key. On top of that, there are several things laying about which I cannot put away; their storage or normal location is now out of my reach, or they are in a position where I cannot pick them up.

Take for instance the light switch cover plates on that same ledge. Those I could toss into my large item tool bag, just to get them out of the way. They really belong in my fix-up junk box, the one two shelves too high in my bedroom closet, the shelf I cannot reach. It's the same place the old hardware from my front door belongs, the hardware the condo board asked me to remove so they could paint the doors. Now I find out they are not going to re-use this old hardware; they are putting new stuff on, so the old stuff sits there until I remember to ask someone to put it away. The same with the screws for those cover plates; they belong in the fasteners container up on that second shelf.

I think the ones which get to me the most are the ones left by others; left in places I cannot reach which I tidy up. These kinds of things are often left by the homemaker and by caregivers, lest they move something they shouldn't move. They are trained to leave things where they find them. Oddly enough that training only seems to work with trash bits. When it comes to caregiving items, those seem to move all over the place, lost one week, found another.

Another interruption. I could no longer stand the light switch plate screw on the floor in the hallway, or the other screw on the end table in the living room. I couldn't put them away, but at least they are on the ledge with the others. While I was at it I picked up the old wine instruction sheet of the floor of the bathroom along with the dirty cleaning cloth. Then, when I tossed the cloth in the laundry, I grabbed the paper towel off of my hospital bed-stand, the one left there by my HCA this morning.

You might think, with all the time I have on my hands, that this kind of tidying would give me something to do. True, it does. It also wears me out, quickly. Right now my arms are shaking from the work. My typing is slowing down, getting worse, as the weakness in my arms transfers downwards, the shaking in my fingers causing me to create even more typographical errors than usual.

So now I am exhausted. I need a rest. All from picking up a few bits and pieces other people have left behind. I know they don't do it on purpose. In their life it's nothing, a mere trifle to be dealt with next time round. For me, it's a full day of work.

Saturday, 25 August 2018

I'm Getting Worse

I've reached that stage of ALS where my general health is at risk almost constantly. There are all kinds of petty illnesses causing me constant grief, from constipation to rectal mucus, from perpetual infection to skin breakdown. There is little I can do to stop all this. It's the outcome of a failed core body along with the general ill health generated by lack of activity. I have both the illnesses of a sedentary lifestyle along with the illnesses of a weakened immune system.

A lot of PALS deal with this, the ever present risk of some sort of illness, something to knock them back in their chair. We all live with the threat of it, ALS providing us with a constant reminder that we are in a permanently weakened state. It's nothing extraordinary or unusual; it's just how it is as one progresses down the pathway of ALS.

It's not unusual for me to decry how unfair life has been to me, or how I got ripped off. It's pretty much a fact on both counts. On the other hand I have had a pretty wonderful life, right up until my mid-50's. I've had the kind of life many wish they could have had, the kind of life people dream of having. All that has happened is that the dreamy portion got cut short, and the marriage portion failed completely. Still, not bad overall.

In reality there are a great many people who have not enjoyed life as much as I have, a great many people not surrounded by the love and generosity of family and friends. Most PALS have nowhere near the kind of support network I have. Many people don't have the kind of joy which I continue to have in my life. Their are prisoners in jails for life, having entered therein as young as 19 years of age. I've had friends murdered at the same age. There are young mothers with cancer who will never see their children grow up. There are people who were in wonderful marriages only to see them torn apart by accident or illness. The world is filled with suffering worse than mine. That does not diminish mine in the least; it simply gives me pause, reminding me to be grateful, constantly.

I'm getting worse. Then again, with ALS there is no getting better. I will continue to diminish until it all comes crashing down. And even on that last day I will lament what I am missing. It's in my nature to want to see what comes tomorrow. Today I get that chance. I am glad of that.

Friday, 24 August 2018

My Laptop Is Back

Finally. I have my laptop back. This is the longest period of time since I got my first laptop over 30 years ago that I have been involuntarily without one. The longest time voluntarily without a laptop was in 2014, when Cheryl and I went to Europe for two weeks. Even then I took along my tablet; at that time I still had enough finger control to type on the half-sized keyboard, and enough visual acuity to see the small letters onscreen.

These last two weeks have taught me a lot about how much I use my laptop; for social connection, for keeping track of our search for caregivers, for music, for pictures, for movies. I watch Netflix on it more than I realized, sitting here at the table rather than setting myself up in the living room. My table has all my stuff on it, once again that stuff includes my laptop.

Perhaps the biggest loss over the last couple of weeks have been my blog posts. I know many people worried while I missed those posts; I truly appreciate their concern. I know that things have happened, like the visit from the physiotherapist where he encouraged me to keep my own bed rather than get a hospital bed, or our wine bottling dinner the other day where I was reminded once again how much in need the help of others for almost everything these days.

Speaking of the help of others, without naming names I want to thank those who helped me get this laptop fixed, who paid to get my laptop fixed. It was an incredible burden off of my shoulders, knowing that I wasn't on my own in getting this done. I live because of the generosity of others, both family and friends. Having my windows on the world allows me to say thanks, both publicly and privately. So, thanks!

Friday, 17 August 2018

I May Be A Bit Paranoid

I'm going to try to post a blog entry from my tablet once again. I had written one the other day but from some reason I cannot fathom, it simply went in as a draft. I wondered where it went. Now that content is irrelevant. Mostly it was just me whining and complaining about my laptop dying, and the expense of replacing or reparing it. Fortunately it looks like it will only be about $150, and a family member has offered to cover that.

My laptop should be back to me by Monday, all things working as planned. The repair shop has ordered the motherboard to replace the original. It was fried, I think by a lightening strike pushing a surge through the house. During the lightening storm last Sunday, my laptop was, unfortunately, the only electronic device in my home not plugged into a surge protector. I plan on changing that when I get it back next week. Of course the whole thing could just be a coincidence, ending up with me borrowing a surge protector from David.

I have these power bar/surge protectors all over my apartment. It seems modern technology has a lot more plugs than the original designers of these apartments thought. In every room there is shortage of outlets, forcing me to use multi-plug extensions and surge bars all over the place. Part of this demand, of course, are the various chargers for lifts, wheelchairs and such. My apartment is an electrical zoo, animals of all type here demand power.

This wicker basket of wires has grown larger and more twisted as I have attempted to "Google-ise" my apartment, attempting to turn it into a smart home, driven by voice or light finger touchess. I am unable to create the pressure to push a lot of the buttons required these days, so having voice control helps a lot. I'm not sure what I will do as my voice weakens and disappears, but for now this seems like a viable solution. All I have left to do are the two dimmer switches for the kitchen and dining room. By concidence the cost of these two devices is $150, the same cost as repairing my laptop. I have to ask myself if this is truly a coincidence, or is it a conspiracy. Remember, it's not beingx paranoid if they really are out to get you.

Saturday, 11 August 2018

The Mountains Are Ablaze

My floor reflects mottled colours of gold and red, and even grey sometimes as the beleaguered sun works desperately to throw light through the heavy haze covering Calgary and much of southwest Alberta. The great cordillera is ablaze, from the top end of the Rockies in northern BC through to the mountains of Colorado, and through again to the high Sierra's of southern California. Forest fires rage, turning the very sky to flame, threatening life both human and animal.

I wonder if this is what the global Hothouse effect will look like, or perhaps does look like? Is this a foretaste of what climate change offers us, even those smug enough to think we are safe from the effects of this planetary change? I fear the future holds an increasing number of summers ablaze in the mountains and great boreal forests, with record temperatures everywhere.

You could find other, more fearful examples, yet this is one that we, even in a "lifeboat country" will experience. Other changes, such as a rising ocean, presents limited threat to those who live on the BC coast. In a piece of delicious irony, only the wealthy can afford to live in those homes threatened by rising sea levels and increasing storm surges. The poor among us have been compelled to live high up the hillside, away from the water.

There are changes coming, big changes. These changes threaten to wipe out as much as half of the human population on this planet. This does not mean we are killing the planet; we are simply killing our species. The planet, in whatever form it takes, will continue, perhaps to support life, perhaps even to support human life. Perhaps not.

Friday, 10 August 2018

Look Ma! I'm An HR Manager!

It's finally happened. The Alberta Health Services has given me an ultimatum, although it was given in nice, polite, inoffensive terms. It constantly amazes me how government employees of all stripe learn very quickly not to say what they really mean, but to imply it, poke around its edges, soften their words, then allow you, almost force you, to draw the conclusion.

The ultimatum is simple, driven by my change from Self-Managed Care to Vendor Care with the loss of a live-in caregiver. I must either give up my newly purchased adjustable bed, trading it in for a standard hospital bed, or the Vendor Care agency will refuse to supply home care services to me. Alternatively, if I have my own, private caregivers, there is no need for the discussion.

This all has to do with my weight, the size of my bed, my inability to help, when the caregivers are rolling me from side to side. This problem has arisen in the last couple of months with the loss of strength in my arms and shoulders. With ALS, muscles proximate to the spine typically go first, the disease working from inner to outer. So being able to type, being able to use my forearms, is of no use in this situation.

I have decided to skirt the issue by hirinig private caregivers as quickly as I can, most likely part-timers, one for the mornings, one for the afternoons, and another two for the same blocks on the weekends. One thing I have to do is research Alberta labout law with respect to the minimum time slice I can provide within that context. I would like to do 3 hours in the morning and three hours in the afternoon/evening. That afternoon/evening block would have a short visit at dinner time, then a longer visit for exercises and putting me to bed.

My workload as a personnel manager just went way up. Let's hope I have the energy for it.

Thursday, 9 August 2018

And She Likes Red Wine Too

Perhaps it helps to complain about my HCA. The one who was not good decided she didn't want to see me anymore. That left a gap in my schedule. We tried a new one on Wednesday, a process which exhausted us all. That one decided I needed more care than she was willing to give. So today I got another new one. This one seemed perfect, perhaps too much to hope for.

One of the first thing which endeared her to me was when she was turning me over. Her supervisor, there to provide training during this initial visit, asked if rolling me was too difficult. The new HCA responded, "It's requires energy. That's why they call it work." That could easily be a McBride aphorism. It speaks to attitude.

The other thing I really liked is her almost immediate understanding of not only what needed to be done, but why it needed to be done the way it was done. She didn't quibble, noting immediately that the extra steps for cleanliness made sense due to my illness. The did the work quickly, with focus, yet not so quickly as to make me feel likea lump of meat to be tossed around.

Nobody completes everything their first time. We got close. Rather than make breakfast for me, I asked her to tidy the kitchen. Emma had already put the recycling in the hall, ready to go. My water jug was full. My bed was made. It was all good. I am impressed with this new caregiver. I hope she sticks around.

Oh, and she likes wine, especially red wine. That's an immediate win with me.

Tuesday, 7 August 2018

The Line

A line in the sand... I drew a line in the sand once. Then I drew it again, and again after that. My last line in the sand looked pretty much as I do now, yet here I am again, only this time there is no line. My hands are no longer strong enough to draw that line. I am no longer certain about where I am going, where I will end up.

That's the problem with a line in the sand; the smallest breeze can erase it. The slightest change in direction, in condition, in approach can make that line irrelevant, causing it to disappear as grains of silica on the lip of a dune. I've given up on lines in the sand. My horizon, much like the lip of that dune, is ever-shifting, ever-changing.

I no longer think of my life in terms of can or can't, will or won't. These days my life is more about what, right now, do I need to keep going. The concept of a future has become increasingly unimportant as I draw closer to that day when I will not have one.

For all but the strongest of us, we will see our lines shift and sway with the wind. Only the few will draw that line firmly, daring never to cross it, taking the decision when the line has arrived. For the rest of us, we will cling to life desperately, blazing through that line in the sand like a missile over the desert itself. We will ignore this one, drawing immediately the next one, until we are no longer able to draw lines. Then the line won't matter. The decision will no longer be in our hands.

Monday, 6 August 2018

A Tale Of Two HCA's

I have two new HCA's working for me, one of whom wants to do a good job but struggles, the other of whom doesn't really want to do a good job yet still struggles. It's interesting to see the approach taken by the two of them. While the first does her best to pay attention to what she is doing, the second is almost completely unaware of what's going on while she works with me, seeming almost resentful about having to do the work.

So lets start with the most problematic, my new morning HCA. She has been through this routine a couple of times. When she arrived she said she wanted to get the commode chair. I said she had to drain me first, to which she replied "We can drain you in the shower." I think somehow, notwithstanding other mornings, that I might magically drain my own bladder while sitting in the shower. I know others can do that; alas I cannot.

She grabbed the catheter supplies and started the process of draining me. I reminded her that we had to do peri-care first, to which she said "Why do we have to do peri-care? You're going into the shower." I reminded her that I didn't want he shoving that catheter down my urethra without cleaning that area first. She was unimpressed.

There were a couple of other questions like that, none of them seeming to come from curiousity about process. Instead they fell into the category of asking why she had to do something, looking for a way to not do it. I could attribute them to a desire to fine efficiencies. Somehow, based on tone of voice and approach, they didn't sound like that.

The worst moment came when she was transferring me into my commode chair. She had the brakes on the chair, while the chair feet were braced against by bedframe. When the chair became jammed, she went to move it back, only to realize the brakes were on. She undid one brake. As she moved to the other side I said "Be careful. This chair is going to fall.." My warning went unheeded. She undid the other brake. My commode chair slammed to the ground, potentially hurtling me onto the floor. I was ready, my hands gripped tightly to the handles. I knew my warning would go unheeded.

Perhaps the best one of the morning was when we were close to done, having successfully failed to do exercises or make breakfast. She was wondering if we could start making some sandwiches. I asked her if she had read the list on the door. She said "I know what is on the list!" I replied "Then why don't I have any water on the table." She filled my water jug.

The list on my apartment door shows the five most important things the HCA must do in the mornings. They are
  1. Make my bed and ensure the sling is setup for the next use.
  2. Ensure my water jug and mug are filled.
  3. Sweep or mop the floors as needed.
  4. Empty or start the dishwasher as needed. Clean other dishes not in the dishwasher.
  5. Take out the garbage or recycling as needed.
Total combined time to complete the list, assuming you have read it and focus on the tasks, is about 10 minutes or less. It's easy to do while I am in the sling, minding my own business. I asked her to start the dishwasher and handwash the few remaining dishes. When that was done, she immediately when to the daily book to sign off on her tasks, notwithstanding that some remained undone.

The floor is still stained and dirty. The garbage and recycling are both full. As to making the bed, well, she took a minimalist approach; no quilt, sheet only, and it was upside down with the head at my feet and the foot at my head.

The there is my new night HCA. She is trying hard. I know it's difficult for her; she's a mother of four so her days are long. I am her last client of the day. Yet each time she is here she has become more proficient, getting things done in a timely manner, remembering the things I need in place before she leaves. The final thing on her list to remember is plugging in my power chair. I am confident she will get that done tonight.

I will leave you to decide what the difference is between the two, and why. For me, I just have to live with it until things can change. Today we did not do my exercise. I have had no breakfast; I won't eat until dinner in about 3 hours. I'll live.

Sunday, 5 August 2018

The Burden

I'm tired. So many of my thoughts these days range to the negative, to the failure of my life, to the illness riddled depths to which I have fallen. I must take great care these days when I say, or write, these thoughts which dominate my reflections, which overshadow my ruminations. It is nearly impossible to see the world through sunny ways while I live these deeply darkened days.

I am distraught. My ability to sustain a positive thought or view is near worn away to a nub. Here I sit with the second half of my Dad's aphorism. How can it get worse, or more importantly, more realistically, how will it get worse? I know for a fact that it will. I am no longer Sisyphus. Instead I am on a long, slow slide which ends at the river Styx.

So what have I got to live for? What keeps my going against such great distress? Well, I, like my Dad again, want to see what happens tomorrow. Oddly enough I still live with that ghost of hope, that idea that something good might happen for me, that tomorrow, or even today, might include something which lifts this cloud of grey from me. I live in the constant hope of a better tomorrow, as insane as that may be with a disease like ALS.

So why do I continue to live with such unimaginable challenge? Unfortunately the only option is to die from this challenge. I have so many things in my life which make it easier to live, which lift the burden from me. I have things mechanical, things electronic. I have people, the most important thing to have, who care about me, who will help me. While this is an incredibly lonely journey, I cannot say that I have ever been alone on this journey, not from the first moment of diagnosis even up to this day.

I am loved. This matters. Those who love me do the things which keep me going, right from the smallest bit of help to the substantial. This is, perhaps, the most important outcome from ALS, to have learned who loves me, how far they will  go to care for me. Even those who, like me, have so so little are still there, pitching in, helping me carry the load. The burden may be upon my shoulders, but it is easy to carry when shared so much.

Saturday, 4 August 2018

No Sleep Machine Please

Two o'clock. That seems to be my normal beginning of functioning for my day. It's not when I get up, or even when I wake up. Thanks to ALS, waking up often precedes the act of getting out of bed by anywhere from one to three hours, sometimes more depending on the schedules of my various HCA's. No, what usually happens is when I finally am in my chair, mobile and rolling, I have coffee and breakfast, followed immediately by a nap. Then, at about 2:00 PM, I wake up, not really ready to roll, but at least prepared to attempt it.

Two o'clock. That seems to by my normal time to wake up in the middle of the night, often driven to wakefulness by nightmares or dreams. On a regular basis I wake up so quickly I can still hear the echos of the last midnight scream bouncing off the walls of my bedroom. I do not sleep well after 2:00 AM, usually taking at least an hour to shake the aftermath of a nightmare, only to awaken every hour or so thereafter, leaving me wide awake for when my one of my various HCA's arrive.

If I could, I would take a sleeping pill every night just to escape this wakeful pattern. I don't. The sleeping pills hang on for a long time, making me even more sleepy and groggy the following day. Even after 2:00 PM, assuming my drugged nap doesn't run longer than normal, I find it a challenge to be active in any intelligent manner. Often a sleeping pill at night turns in to a totally non-functioning day to follow.

Sleep issues are normal for people with ALS. We need more sleep than most people can possibly understand. Twelve hours out of any day is not an uncommon sleep cycle. The reverse happens too, where we PALS find ourselves unable to sleep in a normal pattern, wakefulness dogging us to the point where we find more that 20 has passed without having a useful sleep. So we are sleep deprived the next day.

Sleep is a big deal. I'm not sure if I want to sleep or if I fear sleep. Sleep brings the dreams, waking me in the middle of the night. Wakefulness carries my exhaustion into the next day. I will most likely die in my sleep, my core muscles unable to push, my diaphragm unable to force CO2 out of my lungs in sufficient quantity to keep my brain alive.

Yet sleep I must. Sleep I will, Whether drugged or not. It is one of those basic human functions, one of the functions I am already beginning to lose as my diaphragm and core muscles weaken. Sleep I will, one day raging in a dream I will pass into that long darkness, staying asleep forever. I wonder if the dreams will follow me into death? Or are they the strange workings of a mind deprived of adequate air?

By the way, to those of you prepared to tell me I should get a Bi-PAP or some other machine to help me sleep, don't bother. This is one of the battles I will leave my body to fight. Soon enough the battle will end. Soon enough I will sleep well again. I don't want a machine.

Friday, 3 August 2018

Low Functioning Day

I am having a low functioning day today. This is as opposed to a non-functioning day. A low functioning day means I still have the strength to write, and possibly do something if accompanied by someone who will help me with doors and such. Non-functioning days are those where there is no blog entry, mostly.

Here is a good example of the difference. Today my HCA started my laundry. I don't know what state it is in right now, wet in the washer or dry in the dryer. I don't know how far she got. I also don't really care. I am going to ask my next HCA to check it for me. She will take it the next step, whatever that may be. My functioning level is enough to be aware of it, to ask for help with it. A non-functioing day would be where I don't even ask the HCA to start the laundry, where I just give up the day without a fight.

It's not that there is any particular fight on a low-functioning day, at least not more than the usual ALS fight to keep going. It just feels like a non-functioning day is a fight to even move about. At least today I can do that, move about. I've even had visitors; the visitor from the ALS Society fixed my wheelchar headrest along with putting a screw into the the A/C window panel so I could start the A/C.

My neighbour came over to visit. She has terminal lung cancer, as my Dad did when he died. She is in that final stage where the doctors have given her a couple of months or less to live. It's kind of odd; we compare notes on the dying process. Hers is faster than mine. I envy her. Inspite of being very weak, she can still walk as she did today, from her apartment two doors down into mine. I envy her. She has a husband beside her who, despite increasing dementia issues, loves her. I envy her.

Perhaps that is what a low-functioning day really is. I don't have the energy to do much, except to waste emotional energy on wishing my illness wouldn't leave me in such a limited state. Oh well, I am hoping to get out shortly, over to Safeway. David is coming for dinner but I've asked him if he can help me get through my apartment doors to do some shopping. That might even be functioning.

Thursday, 2 August 2018

Sorry, Not Sorry If I Offend You

I have reached the age, especially with ALS, where I really don't want to work on my "personal issues", where I don't want to feel like I have to apologize for being who and what I am. I have so little life left, I want to spend it feeling good about myself, enjoying who I am no matter what that is. Perhaps I've reached that age where I should be yelling at kids to get off of my lawn.

This is not to say that I don't care what other people think. It actually hurts me quite deeply when people point out a failing of mine, or suggest that I would get on better with others if I did this or did that. But that deep hurt is really kind of shallow. I shake it off, like snow on a dog's back, then I keep living, not unchanged but not committed to some drastic personality adjustment just because someone said I should do it.

That's why I think I am so lucky with the friends I have around me. Mostly they don't ask me to change things about myself. True, they do express times when they wish I wasn't quite as much of me as I can be from time to time. True, we have differences, even arguments; they flow both ways. But just as much as I take them for who and what they are, they take me just the same.

All of this arises from a comment this morning. I was told that some of the HCA's from "certain cultures" don't like working with me because of my sense of humour. First of all, in my defense, I work very hard not to say anything inappropriate to any of my caregivers. I am respectful of them, and grateful for all they do.

Now, in response to the comment... "certain cultures"? I know we live in a multi-cultural society and I am the first to say we should be sensistive to, and recognize the differences of, culture. The issue I have is two-fold. Humour is the only way I can survive some of the embarrassing and humiliating stuff I have to go through with this disease. It's a joke; get over it. Second, while your culture may be important to you, mine is to me as well. I am not offended by things which may offend you. When you are in my home, perhaps you should adjust to my culture!

Finally, if you are an HCA, you are going to run into all kinds of awkward situations, not for yourself but for those to whom you are providing care. My whole like is full of awkward these days. I piss myself in public. My catheter bag shows at the bottom of my pants. When I eat, I make a terrible mess; I need help sometimes. So try all of this on for size, then worry about what offends you.

Wednesday, 1 August 2018

An Adjustable Bed

After months of pricing, pondering, and procrastinating, I've finally gotten myself an adjustable bed. This is one of the most difficult purchases I have made of late, the combination of cost and alternatives continuing to drive me to delay. In the end, after all considerations, the queen sized adjustable bed just seemed to be the right way to go.

I had saved, and have been holding onto savings for the better part of a year.  I've been hiding that money, from myself as well as others, so it would be there when I finally decided what to do. It's true that the ALS Society oif Alberta would have provided me with a single sized hospital bed, one with all the bells and whistles. However my experience in hospitals has profoundly affected my view of these beds in the negative. Hospital beds are made for the hospital, not for the sleeper. They are narrow and short. My feet always hang over the end.

Buying a used bed was big on my list. In fact that's why I've taken so long to make this decision. I've been checking online week after week to see what I could get. What's interesting is that the price differential between a used adjustable bed and a new adjustable bed is usually about $200. In some cases the used beds actually cost more than the low end new beds.

So I looked on Amazon for the lowest priced head and foot adjustable bed. Interestingly enough, the bed I eventually selected has some higher end features that beds in this class usually don't have. For example there is a massage function along with a Zero G setting, plus the ubiquitous USB ports that seem to come attached to almost every piece of furniture these days.

The bed is a Classic Brands Comfort Adjustable Bed Base with Massage, Wireless Remote and USB Ports, Queen Sized. I managed to get it when it was $100 off the list price. Why I don 't know. Amazon still confuses me sometimes. I also managed to get free shipping! It is now sitting, unassembled, in my living room. That's the last most frustrating part of this whole exercise. I've got the bed, but I lack the strength to assemble it. Fortunately Dion is coming over in about 3 hours to take over that part.

Note that I have said nothing about a mattress. I can save about $450 by using my existing inner coil mattress. This is your standard mattress, the kind most of us have. These mattresses are probably the worst performing for an adjustable bed, a trade-off I have to  make right now. Better to have this than spent even more money. I want to try both mattresses to see which works best. My hope is that Dion will be patient with that extra effort.

So now, with this adjustable bed, I will be able to sit up rather than lay on my back staring at the ceiling. I will be able to use my tablet and laptop in bed; at least I hope that will be possible. I will be able to adjust position somewhat during the night by raising myself up and using the slope to aid in turning. I'll be able to raise my feet to help keep he edema at bay. It all adds up to a much better quality of life.