Monday, 21 August 2017

Cutting My Own Balls

This whole "peeing in a jug" things is not an easy situation. In fact it is fraught with difficulty, even danger. My goal these days it to get through the whole day without peeing on myself. While seated in a wheelchair, unable to adjust my pants, peeing at a right angle with my junk all stuffed up from inside of my underwear, this goal is almost impossible to meet.

Before I go any farther, I need to say that as a man, this whole going pee thing is a lot less of a problem than it is for women pALS. While most, if not all, I have spoken too have tried to keep themselves into transferring from wheelchair to commode, ulitmately they are forced to make an unpleasant decision much sooner than men. Catherization.

The most common approach is the supra pubic catheter, which, like it sounds, avoids the pubic area completely. A small tube is inserted, usually through the stomach wall, into the bladder. In most cases the tube is clipped off. When your bladder is full, you go pee by unclipping the tube, pointing, and letting nature take its course. The step beyond this, when you lose your ability to clip, is a urostomy bag.

For men, as long as we have some arm and strength control, we can always pull out our junk and pee. Or at least that what we would like to believe. In fact getting your penis through the clothing is a realy challenge, especially when that thing wants to hide back up inside your body. To help, you would likely do as I do, pulling out the whole package, allowing easier access to the necessary part.

This pulling and packing takes place in a dangerous environment of zippers and elastic waistbands, creating even more pressure on the situation in hand. It takes a fair bit of pushing and adjusting before everything is correctly positoned. By this time, your poor bladder simply cannot wait any longer. It lets go, while you desparately grab for the jug near at hand before the fountain starts to spray.

If you are lucky, you can get things pointed in the right direct. Then you will realize that pointing directionally while seated in a wheelchair with pants and underwear creating back pressure all creates a situation of "kinks" in the line. You want to. You need to. But you find things moving at a dribble, thanks to the many bends in the road and pressure on the urether. So you adjust, pushing the jug further down, forcing more release room for your troublesome minor member.

That's when you realize that your new jug has sharp edges at the lip, sharp enought to cut soft skin when it slides across while being forced down. The edge of your jug becomes a very dull knife, and you find yourself slicing your own balls with that small, dull knife. You can feel the slight sting, see the small amount of blood. So now you are peeing and bleeding at the same time. Since the bleeding is slight, you know it can wait. You readust, making more smears of blood on your hands and jug.

In the midst of all of this, you start to wonder. "If I get urine on this cut, what will happen?" You see, nowithstanding what you read on the Internet, urine is not "sterile". That is a myth. Urine comes from your bladder, home to any number of bacteria. Those bacteria get lively once they enter the outside air, and even livelier if they happen to find a blood environment. Those cuts can become infected. Ask me how I know.

So finally you are done. Your bladder is finished. The bleeding seems to have stopped. You go to put things away. That's when the "old man" finishing bit decides to make its appearance. Is that cut stinging? It's wet in there. What will happen? In the end, you just have to go on with your life, accepting that this stuff happens. It really does. Once again, ask me how I know.

Sunday, 20 August 2017

Crazy Plus A Bit

I wish I could figure out what people are thinking, what the subtle messages and cues were in their body language. I know it's stupid, but I worry about what people think of me, especially those close to me. I fear their judgement, wanting them to approve of me. In the end I just don't know, can't tell what's on their mind. I do know one thing for sure, their probably not thinking about me at all. It's the nature of humanity.

This emotional insecurity has always been a part of my life. I suspect it has something to do with the challenges in my relationship with my Dad. It was impossible for me to garner any real sense of his approval. He withheld it, know that it was a tool he could use to manage me. It set a pattern for my life, for so many of my relationships. It most likely both created and destroyed my marriage; me, constantly seeking approval, and her, able to judge and direct with that knowledge.

The thing about all of this is that I know my life is drawing to a close. I know I shouldn't really give a shit about what others think of me. I know that those who are with me are here because they love me, warts and all. I know that some of them may draw away is the noose around my neck draws tighter. I know there are those who will be here until my last breath. I know all of these things, yet I still cannot manage to shake my insecurity.

What this demonstrates clearly is that ALS is a disease of the body, not the mind. My mind is as disfunctional as it has ever been, my thoughts as irrational as they ever once were. The only real challenge is struggling with the emotions I get with ALS, combined with the normal emotions in my life. In other words, I get to maintain my normal, screwy insecurity, plus I get the depression and self-doubt that comes with the disease. So, as with everything else in this illness, I am crazy like normal, plus a little extra for ALS. That's just how it works.

Saturday, 19 August 2017

Cookie Time

I'm sitting here, post breakfast, enjoying my cup of coffee. Beside my coffee cup sits a cookie. Yes, one of those cookies. I tried one for the first time last night. I assure you, they are very good cookies. The performed exactly as advertised. The guidance I recieved with respect to preparation and consumption was right on the mark. One of my friends even came over to help me through my first tastes of medical marijuana, in a cookie. Now my temptation is to eat another cookie, right now.

There are a couple of things I need to say before I go to far down the road of describing this experience. First, apparently making 30 cookies from 15g of marijuana makes for a fairly strong dose, approximately half a gram per cookie. My perscription calls for up to 4 grams per day of this stuff. That's 8 cookies. My goodness, I will never be sober again! Second, the cannibis educator told me I would get a balanced, mild high from this particular strain of marijuana. Balanced perhaps, but definitely not a mild high; this was a first class intoxication experience.

It started easily enough, with a bit of light-headedness beginning about an hour after I ate my first cookie. I wondered if this was all there was to it. Nonetheless, I stood by the advice given me and simply waited a bit longer. By two hours after ingestion, I started to feel the full effects of the cookie. That effect continued to rise in intensity until about hour four, then stablized. It wore off, mostly, while I was asleep. There are still some lingering effects; a continued light-headedness, a generally good mood, a kind of calm. This is what I was hoping for.

Oddly enough, my appetite was not stimulated, at least not for food. Water, I needed lots of water. Further, marijuana is not like alcohol; my inhibitions were not lifted. If anything I became more cautious about what I was saying. I knew I was high. I knew I had to watch out for myself. After all, I had a female guest helping me navigate this first cookie experience. In the end it didn't matter. She talked all night, a product of her own high. I listened all night, rarely saying anything. It's kind of funny that she thought almost everything I said was profound. I was so high I couldn't tell you know if I said anything at all.

If, like me as of yesterday, you have not tried marijuana, then the experience is hard to describe. It's like being drunk but without the alcohol. I went through a lot of time dilation experience, momentary stalls of time and thought, and a sense of things taking far longer than they actually did. I completely lost my grip on "reality", but still felt well in control of my physical self. My mind flipped in and out, as if someone else was in my body for a moment. Thoughts spilled out at times; perhaps this was the noted profundity.

Eventually I went to bed. I slept well. Not the kind of sleep from Zopiclone. Instead it was an almost normal kind of night, where I woek up regularly to go pee, where I tossed and turned such as it is these days, where the morning sun woke me up for a bit and then I went back to sleep. Yet it was a solid sleep, a restful sleep, something I don'r really get with the Zopiclone.

I now understand why the doctor prescribed a strain if marijuana with balanced THC and CDB for daytime use along with a high THC strain for night use. This stuff makes me sleep, something I struggle with. The ALS exhaustion is still here; I can close my eyes any time. Getting a solid sleep is what is really tough. The cookies helped a lot in this arena.

So now the real question is whether or not I should eat another cookie now. The effects will be well in place when my guests start to arrive for our party tonight. I'm not sure how they will respond. They've seen me after a few drinks. I wonder how they will see me with a cookie high?

Friday, 18 August 2017

And They're Gone

It's quiet in my apartment today. All I can hear is the background whirring of the fan, pushing warm air around my table, cooling off my feet. There is no sound of little feet pitter-pattering in a gallop from living room to bedroom across the laminate floor. There are no squeals of high pitched voices laughing at their own joke. The is no rakish bellow from a two year old being denied another episode of Paw Patrol, nor the sound of the mad dash to the patio window in order to wave bye-bye to the umpteenth bus leaving the stop in front of my house.

My children, and their children, are off on their long trek back to the Lower Mainland of British Columbia, back to their home in Abbotsford where they will resume once again their routine as I once again resume mine. The routine life of a young family is all noise, bustle, and effort. My routine is so much calmer, so much quieter, so much more peaceful. I am torn between missing their presence and enjoying my rest.

Last night was exceptional. My daughter, Kate, dropped by with one of her friends for a visit. Except it was not to visit me. She does that often enough. She came by to visit her sister and family. Her arrival gave us an opportunity to head over to the mall together; Kate needed to pick up some contact lenses. She had a chance to play with the children, to run off ahead with Charlotte, to share dinner with us. Meaghan had a chance to gossip with her sister, to get up to date on all that was happening here in Alberta. I was left off to the side, simply enjoying their enjoyment of one another.

I even went to bed early, leaving the youngsters to chatter away into the night. I knew I would need that sleep, for this morning was to come early. Meaghan and family left by 8:00 AM, all trooping into my bedroom to hug me and say good bye, the noise of their packing and preparing for departure having woken me some time earlier. Kate and her friend managed to sneak out shortly thereafter without disturbing me, only to return this afternoon to borrow my shower and prepare for the wedding of a friend.

So now I am up. I have time to do something, anything. I am moderately rested, but still tired enough that I could go back to bed. I won't. I will do something, without little helpers. I miss them already.

Thursday, 17 August 2017

Feeling Weak

Not a great start to my day today. I was unable, or unwilling with respect to the effort required, to take my underwear off when I was on the toilet this morning. I asked Sam, my Home Care Aide, to help. Sometimes it is not the actual amount of energy or strength involved that blocks my way. Sometimes it is just the will to do something. I lacked that will this morning.

Then, if you will forgive the phrase, I did a shitty job of washing my ass. In fact I didn't so much wash it as I just let the sprayer on my toilet spray away while I hoped for a good result. Alas, there was not a good result. Once again, Sam was compelled to finish the task. Yes. I did not wipe my own ass today. My arms were too tired to do battle with my body.

I get days like this. No matter what joys or enjoyments are in my life, my body is weak and I am less than willing. It's not a lack of sleep thing; I went to bed at 9:30 PM last night and slept a good 12 hours. Nor was it over-exertion yesterday. I spent most of the day doing nothing. When I was not doing nothing, I was doing very little.

Mostly today it's just because I am feeling weak, weaker than usual. Except that there is no usual with this damned disease. I will go through today, feeling weak. I will do my best to keep going, to be active. But it won't matter; regardless of all other things, I will be weak today. That's just life with ALS.

Wednesday, 16 August 2017

Charlotte Noticed.

There is nothing good about having ALS. There are no positives that come with this disease. There are, however, important lessons to be learned, unique activities that go with being confined to a wheelchair. Some of these are actually pretty neat, fun, interesting. It's not that you have to have ALS and be confined to a wheelchair to experience them. It's just that healthy people are not likely to approach the world in the same ways.

Yesterday was a good example. I wanted to get out a do a bunch of errands. I wanted to spend some time with my granddaughter, Charlotte. So I had her climb up onto my lap while I was in the power wheelchair, and we set out to explore and do errands together that way. It was a five hour journey. It was also pretty terrific.

Our first step was to go across the street to the mall. The new Home Sense store was having its Grand Opening. I wanted to see what was new and different. So did my daughter, Meaghan. So off we rolled. On arrival at the store, Meaghan and Charlotte took the escalator up to the store while I waited for the elevator. Charlotte noticed. Then, wheeling through the store, there were several times where aisleways were blocked with boxes of new merchandise. Sometimes we moved them. Sometimes we went a different way. Charlotte noticed.

After we left Home Sense, Meaghan went back to my apartment while Charlotte and I headed out to conquer Calgary. Our first destination was KenRon Pharmacy, near Foothills Hospital, with our route taking us right through the University of Calgary campus. As we headed that way, we came across road and sidewalk construction, around which we were forced to detour. No problem, except that the sidewalk ramps were uncertain. We ended up on a sidewalk but had to get off and go down the road because there was no ramp at the corner. We eventually made our way past the construction and onto the University pathways.

The route I like to take is past the Olympic Oval; well, not actually past it as much as directly through the lobby of the Olympic Oval as a shortcut. We did just this, at which point Charlotte said she wanted to see the ice rink, something I have never bothered to do. So up the elevator we went, with Charlotte commenting on how the elevator was almost too small for the wheelchair. We went over to the observation area, where we saw speed skaters practicing on the ring. Excitement! We stayed and watched for a bit, something else I have never bothered to do.

After the University, we continued on our way to the pharmacy. As we crossed 16th Avenue, I pointed out Foothills Hospital to Charlotte, telling her that was where I went when I got sick. She asked why I got sick so much, and I told her it was ALS that caused it. She said "Grandpa, I'm sorry you got this disease."

KenRon was uneventful. Our next intended stop was the Banff Trail C-Train station. We rolled along the 16th Avenue sidewalk, crossing the Crowchild overpass. It was there we discovered that the sidewalk turned into a lane separator with the only exit method being a set of stairs. We had to go back. Neither Charlotte nor I were impressed with this blockade.

We made a rather large detour though the parking lot of McMahon Stadium, home to the Calgary Stampeders. Charlotte noticed and commented on how long the detour was, and how easy it was if we could just go up the stairs. I agreed with her. Eventually we made our way to the ramp and crossed the overpass to the C-Train station. I had to warn her that not all the train cars had wheelchair access and we might have to miss a train if we couldn't get to the door on time. Fortunately the train was one of the new ones, with wheelchair access at every door. Charlotte noticed.

Our next stop was the Liquor Depot in Brentwood. This was an uneventful stop, even fun. The elevator at the train station was working. The wait wasn't all that long. The roll over to the store had only a couple of sidewalk interruptions. We navigated. It was in the store where Charlotte started to help once again. I cannot carry that many things, so Charlotte became the puller of the cart, a task she reveled in.

We did our shopping and headed off to Walmart, another uneventful trip down relatively smooth sidewalks. For one part we went right down the middle of the road because of the bumps on the sidewalk; this was a cul-de-sac, so there was no traffic to bother us. We eventually arrived at Walmart, where Charlotte helped me pick out some rather colourful new underwear and a black pair of soft lounge pants. We rolled our way through the mall, heading home.

Our next stop was at a local park where she spent the better part of an hour swinging, climbing, jumping, running... all the things a six and a half year old would love to do. I rested. I needed a rest. Charlotte found a couple of friends her own age whose mother was right beside me. They had a dog. She played with her new friends, and with their dog. When the time came to go home, she jumped back up on my lap without complaint. We headed off.

The last segment of the trip was uneventful, except for Charlotte's complaint about being hungy. It was then I realized that Charlotte and I had been rolling about for five hours. Were I a healthy man, I might have not taken her at all. Instead I would have hopped into my truck, completing the round of errands in perhaps an hour, perhaps less. Had I taken her, she certainly would have stayed in the truck for at least a couple of the stops. Were it not for the wheelchair, Charlotte would not have noticed what she noticed, seen what she got to see, or played for an hour in that park.

Being in a wheelchair forces me to slow down. When it comes to having a small grandchild, this is probably a good thing. You don't have to have ALS to do this. Were it not for having ALS, I likely would not have done this. I am not sure what Charlotte would have noticed about that.

Tuesday, 15 August 2017

Worn Out Arms

Today it's my right arm. It's sore, from my bicep down to my fingers. My left fingers are feeling a bit stiff as well. I wonder if it is from cooking and cleaning yesterday. I did spend most of my day making Cannabis Butter so I could make cookies.There was also the pasta sauce, which required chopping, cutting, and can opening.

The things that wear me out often have their greatest effect on the day after. In some ways this is completely normal. If you spend a sold day working hard on a project, the next day you really feel it. Your muscles stiffen up, your joints ache; of course this only happens if you are over 30 and don't do heavy work on a daiy basis.

I do no heavy work. I do almost no light work. I do almost no work at all. Yet the stress and strain of working my remaining muscles has the same impact on me as it might on you. The only difference is that seemingly easy assignments are difficult. Even light duty tasks seem heavy duty. It takes me four times as long to do the simple things that healthy people do in a moment, with almost no effort.

At least today, and for a couple more days, Meaghan, Lewis, Charlotte, and Orson are both here to help me, as well as here to entertain me. Looking around my Lego strewn table, I realize her success in assembling her newest kit is my success too. I got her the Lego set. Every time Orson's little feet patter across the apartment in a race from room to room, I realize he is comfortable here, comfortable enough relax and have fun without escaping into Paw Patrol on Nextflix.

Meaghan wants a day where she does nothing, or as little as possble. That works for me. Charlotte and I will go out on my Power Wheelchair for a long ride. Charlotte will sit on my lap, reserving her energy for really important stops, like the playground. By the time we get home, Meaghan and Lewis may have partly recovered. They still have Orson to watch, and he alone can be a handful. Kids. They wear out your arms when they are small.