Wednesday, 20 September 2017

Tuesday's Excuse

I stayed in bed yesterday. I didn't even get up to write. Tuesdays in bed; it seems to be a consistent theme, or at least it's becoming a consistent theme for me. The weekends tell the tale. On Friday night I often have somone over, staying up late, hanging out. On Saturday it's fairly common for me to have some sort of event, either wine bottling, or wine making, or a potluck of some sort. Sometimes, rarely these days, I will go out on Saturday. Generally, though, Saturday night involves lots of wine and staying up late.

Sunday is my first day of rest. I will often take a long time to get out of bed on Sunday, the only reason for actual getting up involves some Protestant guilt about having a messy home or laundry that needs doing. I have learned that both can wait, notwithstanding my Grandmother's admonitions in my head. So often Sundays are either a late arrisal, or no arrisal at all.

Then comes Monday, probably my favourite day of the week thans to my HCA Kathy. She comes in and immediatly encourages me to sleep for another hour while she cleans. Then she makes sandwiches for me; by the time we are done it's no longer breakfast. It's well after 1:00 PM most days. So I've slept in a bit, I have food I like, and Kathy has me exercised and dressed. I usually get up.

Tuesday, however, is a different story. Kathy certainly comes in and does her stuff. Yet I know there are no exercises, no intent for me to shower, no sandwiches waiting. Now, to be sure, all the food Kathy makes for me is real food, good food. If hunger were a motivation, I would most certainly get up and eat. It is not; I don't feel hungry all that much most days. I do every once I an while, but mostly I eat because I know it's time to eat, and because someone has made something for me to eat.

So here I am, yesterday morning. Kathy walks in, takes one look at me, and says "You want to sleep, don't you?" I mumbled in the affirmative. She emptied my pee jugs, covered up my feet, and said she was off to make something for me to eat. If I wanted it, I would have to get up.

I didn't want it. I stayed in bed. All day. All night too. And now, finally, I am up. I've eaten. I'm having coffee. I ate breakfast cereal today. I guess that's it. I can go back to bed now.

Monday, 18 September 2017

Does It Matter Which Way You Put On Sweatpants?

Does it really matter which way you put on pants, particularly sweatpants. I know that anything with a zipper has a front and back that matter. I suspect that tight fitting things like leggings have a true front and back, especially if you are a woman with a curvy back end. You don't want all that backside fabric hanging off your front.

Then there are the more causual clothes; jogging pants, sweat pants, lounge pants, things which generally resemble pajamas. These pants seem to have no real differential in thier cut from front to rear other than any pocket slots not running parallel to the seams. This is a good thing for me, since putting on pants is such a challenge these days.

This morning Kathy, my HCA, dressed me, putting on some nice lounge pants and a nice pair of underwear. I was set for the day, except for about an hour later when I went to go pee and made a real mess of it. So I had to change. I reached down deep for the bottom drawer of my dresser and pulled out another pair of casual, lounge type pants. I grabbed another pair of underwear from the top drawer of my dresser. Then the real work began.

I used the sling to transfer onto the bed. Laying down is the only way I can dress myself these days without falling over. From that laying position I yarded and pulled, twisted and turned, grunted and rested, until I finally managed to get pant legs off of my legs. I bundled up the damp clothing and weakly threw it towards the clothes hamper. Next, putting pants on.

The way I do this is to lay the pants out over my legs, then put in one leg. I pull it all the way up, as high as I can go. It takes a lot of effort and time just to get one leg done. Then, I roll over, such as I can, and repeat the lengthy and tiring for the opposite leg. That's when I noticed it this morning, that stupid label that's supposed to be at the back of my pants. There it was, front and center. My pants were on backwards.

At that moment, I had two choices. I could take my pants off and start all over again, or I could just leave them the way they were, backwards. Hence the question. Does it really matter which way I wear these pants, frontwards or backwards? I can tell you this, from a wheelchair it makes no difference whatsoever. I could wear them backwards all day long and nobody would notice. If I was walking, it might make a difference. Then again, if I was walking, I wouldn't be so upset about redressing myself with pants on frontwards.

It's a heck of a lot of work, putting on pants. Today I wore mine backwards. I guess that answers the question.

Sunday, 17 September 2017

From A Real Person

I have no plans for today, or rather my plan is to do nothing today. I'm not totally sure if this will be the case; with not plans today, anything could happen. It certainly wouldn't hurt me to get out in my PWC for a bit, except that will wear me out for the day. On the other hand, so what? I have no plans, not even that afore mentioned plan to do nothing.

As it becomes increasingling difficult to lift and function, I become increasingly willing to allow myself to sit all day, write in my blog, read and post on Facebook, or watch something on Netflix. Note that all of these are not just passive things, but none of them have any form of direct human interaction. Sure we can chat on Facebook, but you are a thousand miles from me. If you are near me, then come visit. I need the human interaction.

Nevertheless, as weakness grows my world continues to shrink. I can still get in and out of my power wheelchair thanks to my sling. The challenge is handling whatever else comes along. It's even getting tiring to hold the joystick in one place while wheeling along. Grocery bags can be slung on the chair. Odds and ends can be put in the backpack, now permanently resident on my PWC. There there is the issue of the dreaded condom catheters. The task of putting the catheter on, without any other tasks, is enough to wear me down for an hour or two.

I like being online. My fingers still work, mostly. My arms rest on my wheelchair arms, my wrists holding them up by resting on my laptop. I like the numbers and variety of people I meed online. It fills this empty gap when I sit home alone, wishing my world was not getting smaller, wishing someone would come visit me. Being online provides me with input and interaction.

Being onliine is especially valued given the amount of time I spend alone, in solitude. While I have plenty of people around me, there still seem to be many times when I find myself alone, wishing someone was here, wishing someone would come share this time and space I have. Sure, I have online friends. But nothing beats a real hug, a real cuddle, from a real peson.

Saturday, 16 September 2017

Brownies For Sleeping

I'm starting to get this medical marijuana thing. There are so many varied effects of cannabis. I can understand why the medical community, or at least some of them, have an issue with medical marijuana. You can't just stay "take this pill and this will happen". It's more like going down the rabbit hole and finding a bottle that says "Drink Me". You don't know for sure what will happen, but you are pretty sure it's going to be good.

Sleep is a good example. Eating a brownie two hours before bed, one that packs a real punch, almost guarantees a solid night of sleep. It doesn't mean it's easier getting to sleep, although it often is, especially if the brownie is really good. What it means is that once I am asleep, I stay that way. It's similar to the Zopiclone but without the vivid, weird dreams. So taking a strong brownie means no sleeping pills. You can see that but the unused sleeping pills on my dresser.

Another well known effect of marijuana is appetite. I have to say that doesn't work for me the way one might expect. In the early effect stages, perhaps an hour or so after ingesting, I acutally feel nauseous. I don't want to eat. When that wears off, as much as it does, I don't get hungry again. What happens is that I can eat, endlessly. I don't think about eating, but when food appears I am ready for it.

Then there is the downside, the constant feeling of being on the edge of being high, a feeling that lasts as much as 48 hours. I have this sense of ease about me, where I see things but don't react to them, where my hearing in my working ear seems enhanced, where I am sleepy but not tired. On the other hand, it's also where my brain feels only marginally connected to my body. Well, perhaps this isn't a downside. Perhaps this is how it is supposed to work.

I will keep eating the brownies at night. I'm not so sure about the recommended cookie during the day. Being high makes it a challenge to be a good host, unless your guests are high too. At night time, however, getting that deep, relaxed sleep is worth being a little buzzed the next morning. So now, thanks to ALS, I am a drunken, pot-smoking, spaced out something or other. I can take it.

Friday, 15 September 2017

Rescue Me

I had to be rescued today.

I thought I had everything under control. I was safe in bed, wanting to get up. All I had to do was slide the sling over to my bed, shimmy it underneath myself, and lift myself up. Unfortunately, as I twisted to get the sling, my leg fell out of bed, my left leg. As it slid off the bed, bouncing over the bedframe, it lodged my foot under the wheel of my wheelchair. That left me unable to sit up or shimmy over the sling in any way at all.

My foot was only lightly jammed. For any normal person, it would have been no problem at all to lift their leg up and out. Only my legs don't lift anymore. They haven't for a long time. Up until recently I could lift my legs up, individually, with my arms. So even without leg power, a short time ago I simply would have grabbed my leg and lifted it. Alas, now that my arms are in full and rapid decline, I can't even do that anymore.

Now the first question some might ask is where HomeCare was in all of this. Well, Home Care Aides were both the assistants in authoring this misfortune, and the angels coming to the rescue. Early this morning, ahead of schedule, Edith arrived. She is not my favourite HCA, but that doesn't really matter. What matters is she was early and immediately told me she was in a hurry. I knew what that meant. No exercises for sure. Rushed shower time. Rushed dressing time. No breakfast. That's just the way it is with Edith; she is on-call for coverage, on salary with CBI HomeCare, and always overbooked.

When Edith arrived, I looked at my clock. It said 9:15 AM. That may not seem early to you, but for me it is barely past sunrise as far as I am concerned. I considered what was happening and told Edith I would stay in bed. What I forgot to ask is for her to get me dressed enough that I could get up on my own, and to position the sling underneath me so I would be able to get up easily. I was not fully functional; I was not yet awake enough to contemplate future needs.

This whole gettting up and dressed is something I can no longer do on my own. So when I want to sleep in, or sleep longer, or just stay in bed for the day, I still get up to go to the bathroom, take my pills, and get dressed. Then I get back into bed, on the sling, and while away my hours. What that means is when I finally do want to get up, if at all, I just have to sling myself into my manual wheelchair, something I can still do on my own.

This morning that whole process fell apart. I found myself in bed, waking up at around 2:00 PM, with no clothes on and no sling. So, I tried to get up. That's how my day began. Needing rescue.

Thursday, 14 September 2017

Laundry And Pictures

I didn't write yesterday. I slept instead, something that is happening more and more.

My hall must be getting longer. I am exhausted from rolling down to the laundry room and back. My laundry is getting heavier too. I notice how hard it is to pick up each piece and put it in the washing machine. This difficulty makes me reluctant to do laundry. When I leave it for a few days, instead of one or two loads, I have four. That takes even more out of me. No matter what I do, my laundry days are coming to an end.

Today, fortunately, Jade is here helping with the work. Still, I have my part to do. Having someone here doesn't mean I can offload all my chores, although if it were up to Jade, I would certainly be sitting and doing nothing, just resting. Travis too. He's in the kitchen cooking up a storm. He got the ham out of the freezer last night in preparation for dinner tonight. We have already discussed preparation approaches. I think I might just leave this up to him. Once again, having help is wonderful. Once again I have to convince myself to accept it, or ask for it.

Travis and Jade are also helping me with my picture frames. I've had these frames sitting for quite some time, waiting for me to have the energy and enthusiasm to put pictures in them, to hang them on the wall. Travis got busy and hung the frames. They look odd with the stock pictures, so I am near compelled to choose pictures, setting up pictures of my children, grandchildren, and my own life. Once again, having someone here to help made it worth doing, and easier to get done.

Now I get to rest for a bit. The first loads of laundry are in the machines. The pictures of my grandchildren are in the frame and on the wall. The pictures of my life are set up, with the frame waiting to be hung on the wall once Travis is finished making breakfast. The only remaining challenge is the frame with pictures of my children. Carla refuses to give me any, so I am having to make do with what I have. No matter, I have enough to remind me of what a great time I've had as a Dad, and how much I love my kids. That's all that really matters.

Tuesday, 12 September 2017

Swinging In The Sling

I am up and out of bed. It only took me an hour. It's not that Home Care didn't come. Kathy was here, earlier. I just didn't want to get out of bed. So instead she put socks and underwear on me, positioned the sling so I could get out of bed, and let me sleep. I slept another couple of hours, then started the labourious process of getting myself up.

First comes the sling. This is getting increasingly difficult for me, especially when it comes to the part of the sling which goes between my legs. I can barely reach down to get the straps now that it takes so much for me to sit up. Instead I now use the grabby stick to grab at the unseen, occasionally surprising myself with where the grabby part of that stick ends up. Usually, after a couple of random grabs, I get a strap. Fortunately the straps are typically close together, so once I have one, I have the other.

Now I am ready to attach the sling to the lift. Remember that as I do all of this, I remain flat on my back, at best flopping over from sit to side by grabbing the M-rails I now have on both sides of my bed. There is no sitting up, although I can slant a little upwards on my elbow with some extreme effort. Nonetheless, the lift itself comes right down onto my belly, so attaching the straps is fairly simple, except that I have to hold my now weakened arms up in the air to do the attachment. Yet, I do it.

Now that I am in the sling, the lift process is fairly easy. I push a button. I go up. I push a different button. I go down. The difficult part is the sideways motion needed to move myself from bed to chair. On a regular basis the lift in the sling will leave me in a place where my arms have nothing to grab, no way to propel myself sideways. The solution to this is to lower myself to where my arms can touch my bed, to where I can grab a sheet to pull myself. The only issue is that this lower position often involves my rear in light contact with the bed as well, creating drag as I drag myself into place.

Having done all of the above, I find myself in mid-air next to my bed. Now I begin groping for the appropriate chair, hoping that it's in a position for an easy grab. Sometimes it is, sometimes it isn't. This morning, for example, my wheelchair had rolled just out of my reach. In order to get it, I had to lower myself to the floor, fall over towards the chair, pull it to a point where I had a hand hold, then lift myself up with the sling again to where I could get into the chair.

In some ways its kind of fun, flying back and forth across my room in the sling, held aloft by the lift. I feel like Baron Harkonnen of Dune, with his insane ceiling traversing sling designed to hold his massive bulk, able to pull heart plugs out of those who had fallen out of favour. You see, even though this process can be tedious and difficult, I can still have fun in my mind.

Of course, that's the deal with ALS, isn't it? My mind is sharp, my imagination fully functioning, my awareness of both irony and joy complete. The kids see my sling and lift as a fun ride. Once I am in it, I try to do that too. Then, alas, I must return once again to my reality, into my wheelchair, slung no more. Or maybe not. Maybe one day I should do what the kids do, and sit in my sling, swinging away, for an hour, maybe two, forgetting that my reality awaits on wheels below. Maybe, just maybe.