Friday, 15 December 2017

It's Never Just One Thing

I didn't write yesterday. Instead, I slept, spending the whole of the day laying in my bed, snoozing on and off, seriously sleeping at times. I did very little until my evening HCA came in at 9:30 PM. She was shocked, concerned that I had put myself to bed early because she was five minutes late. I let her off that hook right away. All that happened when she was here was the removal of my external catheter, a poor job a draining my bladder, and then back to sleep, only this time wearing a diaper instead of a catheter. I didn't need it; all things worked well last night.

I wish I could say that more often. Today my vertigo is super aggressive; the smallest move turns the world into a drunken dance without the benefit of alcohol. It leaves me pretty much constantly nauseous. This is now a daily thing, where some point of my day will be destroyed by vertigo, nothwithstanding the medication. I wish it were the only thing. Between the vertigo, the constant tiredness, the pain in my back and butt, the troubles with catheters. and the continual atrophy, I just can't seem to get a break from this disease.

What's worse, right now, is I feel like I am gettting sick again. I am going to the walk in clinic today to get a requisition for a urine test and blood test. My guess is that it will show a mild infection once again. It will mean another round of antibiotics, if the tests prove positive for infection, even a low grade infection.

My hope in sleeping all day yesterday was that I might wake up with some level of renewed energy, some sense of capacity, even the smallest willingness to take on a task or two. Alas it did not work out that way. I'm still tired, sleepy as can be. No new energy has found its way into my body. I'm beginning to think I'm reaching a new low level of phsical ability. Or maybe its another infection. Who the hell knows? Maybe both.

Wednesday, 13 December 2017

I Like Clean Underwear

Who would have thought that the act of transferring half a basket of wet laundry from the washing machine into the dryer would have become such a Herculean task? It's almost of epic proportions these days, what with limited abilities and weakened arms. Today I tried to get it done. With some leveraging of a grabby stick and positioning of the laundry basked, I managed to dump the laundry into the dryer. At one point, however, I was fairly certain I would have to ask for help.

In fact I do often as for help with laundry these days. More and more, my Health Care Aides are doing this task for me. They take the laundry down the hall, load and start the wash, and when that's done they transfer it to the dryer. Most time I can take it from there, but some days the are here long enough to retrieve, if not fold it. Today the schedule was screwed up thanks to the Coordinators who don't coordinate for my home care agency provider, and someone using the dryers longer than necessary.

I have a kind of personal policy around this. I would prefer to leave someones laundry in whatever machine it is in, rather than taking it out so I can use the machine. I feel it is a kind of intrusion into privacy to handle some strangers clothing and intimate items. It just seems better to wait a bit, rather than rush the issue by unloading laundry and leaving it on the top of the machine while I go ahead and do mine. I am just not in that kind of rush.

Sadly, this policy may have to change soon, especially in light of my increasing limitations. I will soon have to depend on the HCA's to do all parts of the process, or ask someone else to help me if and HCA runs out of time. In some cases I may have to ask someone to come over and help me finish the process, meaning my own laundry could concievably sit in the machine for hours as I wait.

Who would have thought that one of the defining moments of my independence would come down to having clean underwear? It seems a bit unfair, doesn't it?

Tuesday, 12 December 2017

Weakening Arms

I forgot to ask my Health Care Aide to put my shoes on for me today. Thus I have no shoes on my feet, and I am thinking of going outside. It's not tremendously cold today, but once you add in the chill factor of me rolling along in my wheelchair at top speed, you can see how shoes can make a difference, if only to cut the wind.

The real problem is I am not longer able to put on my own shoes without great difficulty and a fair bit of luck. I've tried and failed several times recently. Thus, in my current situation, I am compelled either to go without shoes, chilling my feet substantially, or to ask for help from one of my neighbours, several of whom have helped in in the past with this predicament.

Unfortunately this is one of a number of things which have been lost to me of late, that ability to put on shoes. As my arms fail in earnest, more and more things are becoming too difficult for me to handle. Rolling over in bed is another of these normal things which is becoming near impossible. Yes, I can still do it. No, it is not easy. Sometimes I try and just give up after too much exertion. Most times I work like hell to get it done.

Then there is the continuing loss of ability to pick things up, especially things weighing anything more than a few ounces. Last night, after successfully using my urinal, it was so full I could barely lift it over to the dresser. I worried about dropping it, spilling the contents all over the floor. It's happened in the past; it will certainly happen in the future.

Making and eating a decent dinner is also becoming problematic. Eating is no challenge from a chewing or swallowing perspective. It's using a fork, without spilling, that is the issue. I can hold the fork just fine, but there are moments, fleeting as of yet, where picking it up when loaded with even the smallest amount of food causes sufficient shaking as to empty the contents thereon. As to cooking, it is difficult for me to lift things on and off the stove, in and out of the oven. It is almost impossible for me to stir and blend on the stove, unless I lift my wheelchair up to the point where the required actions take on a downhill slope. Then it gets easier.

Picking things up off the floor is impossible now unless I use a grabby stick. If I lean over in my wheelchair there is a substantial possibility that I will not be able to upright myself. It's happened a few times now where the only way I could get vertical again is by using various bits of furniture to pull myself back up after leaning over. At some point in the not too distant future it will become impossible.

Showering is becoming difficult as well, at least that part where I have to lift my arms. It means lathering and rinsing my scalp is a genuine chore, requiring all the limited strength I have to get my arms and hands up there, to pick up the shampoo bottle, to push down the dispenser handle, to move my hands without support. I am still moderately able, but the end is in sight.

There are so many more small things, things you don't think about until you have to do them, things which I have done as normal course since I was a small child. Using the remote control, holding my cell phone up while talking, reaching for things on a shelf, pouring a glass of wine from a full bottle; these are either lost to me now or quickly passing from view. All of this because my arm muscles are failing, struck with atrophy, thin and frail, both pain and limitation striking me, stealing my abilities. This is, once again, life with ALS.

Monday, 11 December 2017

It's About Quality Of Life

It has been once again suggested that I might move closer to my children if I want to see them more often. Prima facie that seems like a sound idea. Alas, it's the devil in the details that throw a spanner in the works. Were I able to move there while retaining all I have built here in Calgary, that would be wonderful. Alas, I cannot. As with any change, there are things to be gained and things to be left behind. There are several areas where this is true for me, several challenges which make any sort of move extremely difficult.

First there is the housing issue. I have a wheelchair accessible apartment directly across the street from a major shopping center and immediately beside a city transit stop. To sell my place here and move to Abbotsford would entail spending at least another $50,000 to $250,000 for an apartment there. Renting is no better; there are absolutely no accessible apartments for rent anywhere in the Greater Vancouver or Fraser Valley regions, no matter what the price.

I could go into a home, but it would mean going into a government facility, one where I would get no choice as to where I live. I could conceivably be place in a location even farther away from my children, like Prince Rupert! In addition, government home care facilities are notorious for their poor quality of care, be it in BC or Alberta.

Secondly, I would be moving from a province which, although not tops in general health care, is a world leader in the field of ALS. My own neurologist is currently leading one of the most innovative and hopeful studies for a drug to treat this horrible disease. The only ALS clinic in the Vancouver region is in downtown Vancouver, more than an hour from Abbotsford with no availability of transportation to and from. My medical care would be worse. My Home Care would be more costly. My quality of life would suffer substantially.

Thirdly, my financial situation would take a real hit. BC provides far lower assistance levels for people with disabilities such as mine. While not generous by any stretch, Alberta's AISH supplement provides me with a few hundred dollars more each month as opposed to the BC supplement. My quality of life would suffer substantially.

Fourth, the general cost of living in BC, especially anywhere near Vancouver, is much higher. You would need around 5,863.36C$ in Vancouver to maintain the same standard of life that you can have with 5,000.00C$ in Calgary (assuming you rent in both cities). That, in addition to the drop in financial support, would really put me behind, seriously impacting my quality of life.

On top of all of these things, I have built a pretty strong support network here in Calgary. That defnitely would not follow me to BC. I would move to a place far away from friends, except for those who live in BC. It would be unlikely that I would live close to my children; more likely I would still find myself a distance away.

While I am unhappy about not seeing my children or grandchildren as much as I would like, the bottom line is that relocating would simply be too costly and would most likely end with a reduced quality of life, and possibly even a shorter life span. I complain, but I am not likely to change anything.

Sunday, 10 December 2017

It's All Too Much

There are some days, or more specifically, some moments in some days, where I just feel like giving up, like crawling into bed and staying there, or curling up in a ball like an armadillo hoping not to get crushed or destroyed by the predatorial nature of life itself. There was an event yesterday which did that to me, where I ended up feeling so bad, so incapable of living my life, that I just wanted to give it all up.

I was supposed to go to a Christmas party last night. Supposed to go. I ended up not going, basically for one reason and one reason alone. I am in a wheelchair. The wheelchair itself is not so much the issue as the concomittent effects of being in a wheelchair.

First, the back story. My friend Mike does not have a ramp at his place. However when he has a party and I can go, he gets a collection of the men there to lift me up his front stairs, wheelchair and all. What this means, however, is that to go to a party at his place, I am compelled to use my manual wheelchair, something which is becoming increasingly difficult. Nonetheless, I can do it.

The second actor in this play is Access Calgary. Their services are excellent, however they have a few guidelines which are of impact to me, the most significant being that their requirement is to pickup a passenger from their front door, help them to the small bus, and on the way home to repeat that process. They are no permitted to lose sight of their bus or the other passengers for safety reasons. In addition they are often required to take multiple passengers, so a bus ride that would normally take a half hour can sometimes take much longer.

On the other hand, Access Calgary provides an additional service called Access Calgary Extra. Due to my special needs, I have access to that service. It pays for a cab, a wheelchair cab, to come and get me, and return me, as they would with any other taxi. That means they can come down into my building's garage and pick me up, rather than having to wait on ths street for me to magically appear outside my front door.

So last night, I was to go to Mike's party in my manual wheelchair. Rather than go through the debate with Access Calgary about where they could pick me up, I opted for Access Calgary Extra, the subsidized cab ride. Early in the day, I call them and booked a cab for 5:00 PM. The party started, theoretically, at 5:15 PM but I needed to arrive late enough that there would be sufficient other men there to help carry me into the house. It's just under an hour from my place to Mike's; he lives in the deep south of the city while I live up in the northwest. There was Saturday night traffic to allow for as well.

At 5:00 PM I was dutifully waiting in my garage, having struggled to get into my manual chair, packing my contributions and present in a bag on the back of the chair, and wheeling myself downstairs through multiple doors with my ever weakening arms. Then I waited. At 5:30 PM, I called the cab company, Associated Cabs, to see what was happening. I was told it was a busy night, that wheelchair cabs are hard to get especially since they work as normal cabs too, and that I was next in line for a ride. I called again at 5:45 PM; same story. At 6:00 PM I gave up and went upstairs to my apartment. At 6:15 PM, Associated Cab called to tell me a cab would be on the way shortly. I told them to forget it, to cancel the cab. I would stay home.

This was not a "cut off my nose to spite my face" situation. It was a very real acceptance on my part of the energy needed to get back downstairs in my manual wheelchair, Furthermore by the time I got to Mike's, which would have been about 7:30 PM, the party would be well underway with my having missed much of it. Finally, I knew that I would have to leave at about 9:00 PM to get home on time for Home Care to assist me in getting to bed. Cabbing for two hours to enjoy 90 minutes of a party just did not make sense.

Where this left me is feeling very defeated, both by the constraints on my life set in place by other people who have no interest in truly helping me live as much as I can, and by the limitations of my own physical self. Plain and simple, I can't do it anymore, whatever it may be. For certain if I am going out, my power wheelchair is now a requirements, not an option.

I also felt very alone last night, a feeling that continues with me today. ALS is an isolating disease. My friends, like Tonny yesterday, try hard to keep me in their social loop. Some do better than others. My children are all far from me now, with Kate being the closest at 2 hours away, held even more away with a new husband and family. The others are out in BC, near where there mother lives. It's easy for them, mostly, to see their mother, for grandchildren to visit grandmother. It's difficult for me since, as they are ready to remind me, I decided to stay in Calgary.

It's easy to see where bitterness is creeping into my psyche as well, the kind of bitterness which will isolate me even more. The constant losses, the perpetual inabilities, the dependency on care givers and friends and family and even strangers, the exhaustion in simple daily living. It all wears me down, grinding me ever smaller, ever diminishing. Nobody wants to be around a person who is bitter and angry. I'm angry. I'm sad. I'm weak. I'm tired. And now I'm even crying. It's all too much.

Saturday, 9 December 2017

I Can Only Hope

Some mornings go well. Others do not. It is the natural ebb and flow of things that make the variability in outcomes. Today is a morning which went not so well. For starters my HCA, Olga, called me at 10:30 AM to tell me she would be here at 11:00 AM. No worries, although I was struggling with having to try peeing into a full urine jug. I am sure you can surmise the outcome.

When she did arrive, she did the morning catheterization only to discover there was blood in my urine again. This was not the same as last week; this time it was, or appears to be, a smaller amount, something that happened during catheterization. Nonetheless, Olga felt duty bound to call the clinical nurse at CBI Homecare whereupon they had a very long discussion about the amount of blood, the colour of my urine, other potential symptoms includin pain of which I have none. All this while I am laying on the bed, naked, awaiting the next step in my morning routine.

Oh, and I forgot to mention; my friend Tonny had arrived to make Saturday breakfast for me, something he does every couple of weeks. Tonny wasn't all that freaked out about any of my stuff; he is an inately calm person. Still, he's cooking breakfast for me while Olga is trying to figure out what to do next.

On top of all of this is the fact that Olga is running late, and is now compelled to spend more time than planned looking after my needs. Unfortunately this leads to rushing things. Rushing things is something you definitely cannot do with my condom catheters. Their ability to hold depends on holding me until my essential part is warm, then attaching the catheter properly, then holding me again until the glue sets. It takes time, a fair bit of time she didn't really have. So in the end, my catheter was not well attached. You can guess what that means.

So now, a couple of hours later, I have blown off the catheter, soaked my clothing, and I've had to call for additional help, if it ever gets here. Getting help on a Saturday is not an easy thing. Everybody wants their weekends off, to live their own lives with their family and friends. So here I sit, wet, slowly getting colder and more uncomfortable, with clean laundry in the dryer, waiting for me to get to it. That clean laundry, by the way, is my replacement clothing. So, that's next. At least the morning is over and I am on to the afternoon. I can only hope.

Friday, 8 December 2017

Supervisor Required

So. My caregiver on Friday is a young girl, all of 20 going on 21. She makes the distinction, as most of us did, wanting to seem older, more responsible than someone a couple of years out of high school. She is good at what she does, but lacks experience in a couple of areas, most notably in catheters. In order to get checked out on how to do the various catheters I need, she would need a supervisor. Except the homecare coordinators forgot about that.

When Mikhaila arrived this morning I asked her about a supervisor. She had no idea what was going on, nor had she any real experience with either in/out catheters or the external, condom catheters I wear during the day. She was very reluctant to try doing them without a supervisor, so we decided to call the office and ask one to come out. Unfortunately my regular supervisor, Erin, has today off. This means the covering supervisor, in this case Aragash, was busier than a one armed paper hanger with and itchy rear end. She said she would come as quickly as she could.

As quickly as she could in fact meant 90 minutes. I don't blame her at all. She was covering for another supervisor today as well as working with her own team and clients. And because the in/out catheter is the first thing in my day for any number of reasons, we simply had to wait. That wait meant I would miss out on exercises today. It's not the end of the world, but I let my displeasure be clearly known. I have a limited number of hours in my life; I don't like to waste them waiting on someone else's mistake.

We did finally get the whole catheter thing done. Mikhaila was deeply concerned; it was her first time. With furrowed brow and tongue held firmly at the side of her mouth, she inserted the catheter, slid it all the way to my bladder, and drained me. Then, after my shower, I explained the workings of the condom catheter. She grasped both the principal and the attending member, put the thing on, and attached it to my leg bag.

Now she is an expert, at least where my private parts are involved. That's the last HCA needing this kind of supervision so, hopefully, from here on in time will be conserved, no supervisor required.

Thursday, 7 December 2017

Senescence

I'm late in writing today. The only excuse is that I am exhausted, or at least incredibly sleepy. I'm not sure if it is from being over-active the last few days, especially after the incident on Monday, or if it is the Zopiclone I took last night, it's effects hanging on, doping out my day. Either way all I have managed to do so far today is sit in my power wheelchair, napping, occasionally shifting position, mostly drifting in and out of sleep.

Most likely it is the effects of all things combined. Although it wasn't much, bleeding internally, inside of my bladder, clotting suppressed by medications, certainly has an effect. Just getting over a long, stubborn infection in that same organ is almost certainly having an effect. My toss and turn night on Tuesday night did a fair bit of damage to my energy levels. And of course yesterday itself, with laundry, shopping, cooking, and bottling wine was the kind of day sure to sap my strength.

The most frustrating part of all of this is how long it takes my body to recover these days, from almost any insult, be it self-inflicted or otherwise. Certainly a part of this is age; I am, after all, in my sixties now. I would refer to myself as a sexogenarian, but that just sounds weird. Regardless of how you put it, I am at an age where my body would slow down, ALS or not. Were I better, I would be stronger, more enduring, more capable, yet still in my sixties. I am no longer a young man.

I don't mind getting older. I would like to get a lot older, but with the normal effects of aging. I don't want to go on too long with both senescence and ALS. It's a tough combination. One, or the other, that's it. I just seems fair, a reasonable thing to ask for.

Wednesday, 6 December 2017

Thank You

I am constantly in a state of gratitude for the kind and generous support I get, from family, from friends, from people who follow my blog, and sometimes from complete strangers or people at least two degrees of separation from me. It reminds me of how fortunate I am, notwithstanding this one small medical issue. I am a lucky man, perhaps one of the luckiest people I know.

My biggest concern these days is saying thanking, both personally and often, to those who help me out both financially and physically. I find myself often without energy to respond to those I should respond to, without energy to say even a simple thank you with an email. You might think it is easy, but today I find myself worn out just typing out this blog. And I don't want to say something trite or repetitive. In fact I often don't know what to say at all.

There are people, and you know who you are, who have continuously supported me financially for a long time, people who have made donations through my blog and people who have emailed me with Interact bank transfers. I am always humbled, by both the small and the large contributions. These are people who are giving what they can, in whatever way they can, to help me live these last days and weeks of my life. I am in awe of their generosity.

Life has been good to me, until recently. Even the first few years of ALS were not all that bad. Then, a couple of years ago, my own money ran out. I had outlived my financial capabilities. These days it is truly a month to month existence. Yet I am calm, confident that no matter what happens things will all work out. It is only due to the kind support of others that I can feel this calm, this sense that everything will be fine. You, those who help, make a great deal of positive impact on my life. Thank you.

Tuesday, 5 December 2017

Or Maybe Not

I'm feeling pretty good today, kind of mellow and relaxed. This is, of course, not counting the perpetual vertigo, dizziness with almost every move, and nausea intermittently all day and night. Funny thing; those issues don't seem to stop me from feeling good, from enjoying my morning, from making plans for the day. They are just another part of a continually failing body. That's all.

It's December, time to put up Christmas decorations. Dion put up my outside lights and garland on Sunday, so I am already ahead of the game. While he was at it he kindly brought my Christmas tree and decorations up from my storage locker. My plan for today is to rearrange the living room enough so that the tree can be setup and decorated either later today or tomorrow. There is no rush.

There is no rush for anything. I am in the conundrum of a place where I have lots of time, but not a lot of time left. My days are mostly slow, unhurried affairs, with plenty of room for interruption and distraction. There are very few things in my apartment needing to be done, and those which are awaiting attention need not have it any time soon. My biggest thing right now is one of my perpetual tasks, tidying up the spare room. I tend to toss things in there to get them out of the way, eventually filling the bed and floor space such that I need to take an afternoon, probably with a helper, to tidy it up. The helper can do it all in a few minutes; it will take me most of the afternoon. That's just how it is.

For today, it's the Christmas tree. At least I think that is what I will do. First I want to finish my coffee, contemplate life, perhaps have a nap, and see what the afternoon brings. I am expecting my Case Worker from the ALS Society to drop by this afternoon. I have a couple of things I need his help with. After that, another nap or rest of some sort. Then, maybe, the Christmas tree. Or maybe not.

Monday, 4 December 2017

Bladder Trauma

It's another late blog entry today. That's because it was another hospital visit today, unplanned and right from the get go. While Kathy, my HCA, and Erin, her supervisor, were here this morning, we all noticed blood in my urine, bright red blood, both in the jug from last night and in the catheter tray this morning. We were all speculating as to what it might be, but all of us thought, collectively, that it was a good idea to head me over to the hospital and get it checked out. I called 911.

This time I went to a different hospital, Peter Lougheed Center. It was much like Foothills Hospital, right down the the constant, ongoing construction which has been taking place for years in both hospitals. I don't know how the province prioritizes things like this, but these renovations, in both hospitals, have been going on for years, many years. One hopes the province can find the money one day to finish this work. As it stands now, they offer excellent service in the worst of conditions, renovation conditions.

When I got to the hospital, it was about 12:45PM. Nobody seemed in a hurry to see me, so I relaxed and waited for the long haul. It really wasn't that long at all when you take into account all they had to do. First there was blood to draw for the laboratory, to test for all kinds of things, especially hemoglobin count to see if my kidneys were functioning properly. Then there was urine to extract with an in/out catheter to test for bacterial infection. There were also, of course, the obligatory meetings with busy nurses and a very busy doctor.

All the medical professionals helping me today were women, and all of them seemed to need to closely inspect my genitalia for suspect damage, including a fully manual check of the status of my testicles. I told no jokes. In some ways I was more concerned than usual, in that nobody has ever inspected me that closely in the past. Nonetheless, after inspection and tests, the doctor concluded that the blood in my urine was mostly likely from "trauma" to my bladder from the insertion of the in/out catheter last night.

On a more pleasant note, I ran into one of my friends while I was in the hall at the hospital. She works there as a Social Worker, a resource I have had to draw on now and again. She wouldn't have even known I was there except for running across me in the hall. Her two visits made the day so much nicer. She is a wonderful person and we had so much to catch up on. I am certain I will have her and her partner over for dinner sometime soon.

So you see, a hospital visit for me isn't always bad news. Sometimes, rarely, good things can happen at the hospital.

Sunday, 3 December 2017

Happy Day

I find it interesting,  almost fascinating, that, while in the midst of a terrible illness, uncertain about where the money for next month will come from, unable to accomplish even a fraction of what I used to be able to do, here I sit, feeling almost content, perhaps fully content. I am comfortable in the midst of my body's discomfort. I am happy, even though I have so much to be unhappy about.

I won't lie. I'm not feeling well. In fact, thanks to vertigo, I'm not even feeling all that good. Yet within me, within my spirit, I am calm, capable. While I am not enthused, I am certainly ready for a good day. The greatest difficulty I face is a body which is failing me. In my heart and mind, all that can be good is good, all that can be happy is happy, all that can be content is content.

Perhaps that is what makes this state of mind so interesting. How can I possibly be happy like this when so much is failing in my life and body? How can I possibly feel this content when I have lost so much of my physical ability? I suspect the reality lies in my now learned ability to see how much my body is not me, to see how much my spirit and mind live inside of a dying outer physical husk. It is an interesting philosophical, psychological study, to see myself living and dying at the same time.

It might be the Christmas music playing on my sound system. It might be the care from Samhar this morning. It might be the fruit plate I made yesterday and am enjoying today. Yet I don't think so. I have learned that happy surroundings don't make me happy. What makes me happy is the gratitude I feel for having today, for having lived through many days past, for the hope of a better tomorrow. What makes me content is knowing that I am safe, in good hands, surrounded by people who love me, who care about me, who give me a reason to keep living. I am happy when I remember how fortunate I am.

I'm going to have a good day, a happy day. ALS be damned.


Saturday, 2 December 2017

Touching Me

I felt compelled to admit something which I find personally embarrasing to my HCA, Samhar, today. We were discussing the best method for getting my external catheters to hold properly. It was a problem again last night, a problem with messy consequences. Inevitably the discussion turned to the benefits for the glue if I have a semi-erect penis. This is a decidedly difficult topic for me. The admission I had to make to Sam is that it is also a process which kind of feels good, so I feel improper when discussing it with an HCA.

The wonderful thing about Samhar is she has no issues in discussing this most personal of topics with me. Her first response was "Of course it feels good. It feels good for everybody." Of course my well tuned North American sense of personal shame about anything feeling good jumped to the fore. I said to her that this was an intimate act that didn't seem right with a care worker, especially one with a husband and two children. She said "Don't be silly. It's a part of life for everyone. It's natural."

I continued to have difficulty with having the discussion in an unstilted, direct manner. So Sam told me the story of her five year old boy, a story she has told me before when I first started needing serious help with the catheters. She was dressing him one day when she noticed he had an erect penis. It happens on little boys, even babies in the womb. As she says, it is a natural function. As to her son, she looked at him and he said "It's okay, Mommy. I'm just playing." Samhar laughed, her boy laughed. I think she also took a layer of shame away from him, something so valuable in mental well being.

Her point in telling me this story was to help me with my own shame about my body, my reactions to having my private parts touched, sometimes at length and in stimulating ways. This has always been one of the most difficult parts of care for me, accepting that these women are touching me in intimate places, in ways that have to happen but have unintended consequences. It doesn't seem to bother any of them as much as it bothers me.

I am sure part of it is my fear of being accused of something sexual when in fact it is something over which I have little control. Another part is my natural embarrasment, courtesy of our Puritan society, about being touched like that. Then, all I do is think about Samhar's little boy. It's okay. I just have to get used to it.

Friday, 1 December 2017

Dressing Me

One of the more annoying things about dealing with Advanced ALS, as the doctors now call it, and the near full paralysis which encompasses me now, is accepting the reality that I can no longer dress myself. Someone else has to do it for me. That means someone else is putting on my underwear, socks, condom catheter, pants, shirt, and even my shoes. These days even a shirt is nearly too much for me to put on myself. I simply can't lift my arms above my shoulders, nor do I have the strength, particularly on my left side, to push or pull an arm through a sleeve.

If you have never had to do it, you should try it, dressing someone who is lying down and not moving, just dead wieght and meat on the bed. This is not like dressing an active child; it's much more difficult. In fact there is a whole branch of forensics based on the reality that it is almost impossible to dress someone properly if you are not experienced with it. My HCA's dress and undress people every day; they are experienced yet even they have problems on a regular basis.

The biggest problem for them is, of course, my compression socks, the most difficult part of my wardrobe. Even I have trouble with them, so it is no surprise that the Home Care Aides fight to get these socks on me, hurting me along the way whenever a sock snags a toe. I have, more than once, heard a curse word escape near silently from their lips as they tug and pull and peel these damned socks over my dead feet.

This, by no means negates the other difficulties. Putting on my catheter bag is simple enough, except when it comes to tightening the elastic straps. It's not their body, so they can't tell when the straps are too tight or too loss. I often have to adjust the straps myself as the day wears on. Getting pants and underwear on means flipping me from side to side several times, all the while trying to ensure my underwear are on in the right direction, and my zipper is at the front, not skewed off to the side.

Shirts are mostly difficult because I can do little to help. The HCA's must lift and pull my arms through these days. The are compelled to tug and tuck my shirts, ensuring they get all the way down in the back, and well over my belly in the front. It's really shoes which seem to be the easiest of things, almost always going on the right foot, sometimes after I point it out, rarely causing pain except when a foot gets dropped. Shoes are perhaps the easy reward for the struggle of the rest of the process.

It takes a fair bit of time to get me dressed. It takes patience on my part and on the part of anyone helping me. It takes an understanding of body mechanics, how things move and where clothing should sit or fit. It takes knowledge of how my body is failing, and what needs to happen to help me. Then, magically, it is all done and I am dressed for the day, usually. Sometimes things are less than perfect, but then again, so is much of my life.

Thursday, 30 November 2017

Vertigo Returns

Vertigo has returned today, with the fury of a Viking raiding party as it tears into a British monastery, looking for gold. It is vicious, constant, confusing. Each move of my head causes my world to spin out of control. Each shift of my body causes the walls to curl and curve as if they were in a mirror fun house at the circus. And of course, it's my own damned fault.

Yesterday, in all my activity, I forgot to take my afternoon vertigo pill. With most of my pills, it takes a day or two of missing before I notice a forgotten pill. With the vertigo pills, even one in a series seems to have a pretty powerful effect just the next day, not even 24 hours later. Clearly these pills are keeping things in control. I worry about how long it will be until the effects of the Gentamycin, the damage it caused, will wear off. Part of me worries that it will never wear off, that my hearing is permanently damaged, that vertigo is here to stay, that these pills are now a permanent part of my life.

I am back on the regimen. I have learned my lesson. Don't forget your vertigo pills. Actually my whole body is returning back to its "normal" regimen. For the first time in a very long time, I slept in boxers last night, not in a Depend. I did it without worry, without fuss. I got up this morning to my "normal" routine, and am spending my day without an external catheter. I have almost forgotten what it feels like, to live without the fear of incontinence. So perhaps things are getting better.

I'm going to take it easy today, take an indoor day. I plan on puttering about with some broken fridge magnets, doing a bit of tidy up, and, for the big goal of the day, cutting fruit to make a fruit platter. I have become addicted to them. I like the simplicity of putting a plate of sliced fruit on the table and nibbling as I wish. Oh, and I have a load of laundry on the go. That should be enough for today, especially since every time I move, I get dizzy.

Wednesday, 29 November 2017

Busy, Busy, Busy

Wow! It's 9:15 pm and I am finally getting a moment of my own to sit in front of my laptop and write. It's just been that kind of day, with lots going on and lots of time lost to challenges and tribulations brought on by ALS. Of course some of these things are challenges for everyone. I just seems worse for me.

Take public transit as an example. Lots of people use public transit, be it by choice or necessity. Now that I can no longer drive, I use transit almost exclusively; every once in a while I will use a taxi. What that means to me is that an already foreshortened day becomes even more squeezed with the time lost on the bus and C-Train. What was once a five minute drive becomes a 30 minute bus ride. What was once a 20 minute drive becomes an hour on public transit.

Of course some of it is straight out time lost because of ALS. I have to catheterize in the mornings now, along with toileting, showering, dressing and breakfast. All of these elements, though, are longer and increasingly difficult thanks to ALS. I need help with the catheter. I need help with getting dressed. My HCA has to do my exercises. All of this takes more and more time out of my day.

On the plus side, the natural busyness of my day was something we all like to do. I did a bit of shopping, then went to a movie and had dinner with a friend. She kindly set us up for a 3:50 pm showing of the new "Thor - Ragnarok" movie. We got to dinner at around 6:15 pm. After dinner and the transit home, I am here at what is pretty much bedtime. Olga, my HCA, should be here in about five minutes. So, from 10:30 this morning until 9:30 tonight, my day has been packed. It would be nice to have a longer day, or for things to move faster. That's all I'm saying.

Tuesday, 28 November 2017

Back To Nearly Normal

Today has begun well, better than a lot of days for a long time. This morning I awoke and had to pee. That may sound unexciting to lots of people, but to me it meant that my bladder is already starting to recover from what may have been more than a year of assault by bacteria. Not only did I have to go pee, but I was able to hold it, to wait while I got my jug and positioned myself. Then, to make it a very good thing, my bladder released 400ml of urine, something which hasn't happened in a long while.

This did not mean no cathether. There was still another 300 ml in there, waiting to attract any bacteria it could. In and Out Catheterization will remain a part of my routine for as long as I live, or until I reach a state where an Foley Catheter becomes a permanent need. Still, having more out than in is a very good sign, a pointer to wellness.

On top of that, I managed to have a controlled bowel movement, although not as controlled as I would have liked it. Nonetheless, there were no unexpected surprises, no soiled pants or pads or linens, no mess to clean up. That is a major win in my department.

Then came the really good stuff. I am dressed today in normal clothes, with the exception of compression socks. That means I am not wearing a diaper. While I am wearing an external catheter just in case, I don't really feel I will need it. But if I do, it is there. The real kicker is that I am wearing jeans for the first time in a long time. I had thought I would never wear them again what with the incontinence and the need for simple, easy clothing removal. Yet here I am, all jeaned up and ready to go.

Oh, and I am also wearing normal shoes today, my black running shoes. No, I don't run; yes, I wear running shoes. My HCA, Kathy, put them on for me. It's not that cold outside. I feel like I don't need the extra padding for warmth. I'm going out this afternoon, assuming the energy I am feeling now holds up. I want to go to the Game Store and look for another trivia game. I want to go to the Dollar Store to get a pill holder, replacing the one I broke a while back.

I am not back to normal by any measure. I am, however, back to as close to normal as I can get.

Monday, 27 November 2017

Feeling Good, Feeling Well

There is a substantial difference between feeling good and feeling well. I am feeling pretty good today, after some tears of relief and realization when I went to be last night. I am immeasurably relieved to be home, yet coming home forces upon me the realization that ALS has taken substantially from me over the last month. So while I may be feeling good, I am, by no stretch of the imagination, feeling well.

It is kind of a tragedy on its own, that I can feel good within my body, yet my arms have reached the point where neither of them can bear any weight when lifted above my head. I am okay for picking things up, but no longer can I bend over in order to reach them; I have to use a grabby stick. I can no longer suspend them in the air for any amount of time, especially when the reach is upward. I can't get things from the first shelf now, let alone the second. Wheeling myself in my manual chair has become a slow and tiring process. An empty coffee cup is too much for me to put in the cupboard.

Much of this change has taken place over the last month, most of which I've spent in hospital. Being flat on my back has meant little exercise or movement of my arms. As I have said before, with ALS, no matter how you lose it, if you lose it you're not getting it back. However, I suspect in this case loss would have occurred whether or not I was in hospital. At home I just would have been more aware of the incremental change.

I think the real awakening to this recent set of changes has come to me in two specific instances. First, I am consistently biting my tongue and inside lip on the left side. This is no longer an occasional occurence; I now have a semi-permanent rip on my lip, and I can actually feel the loss of strength on the left side of my tongue. Second, today in the shower I was able to take my shampoo bottle down from the corner shelf, just above my head. It's at a height for "normal usage". When I went to put it back, I could not reach it up. I had to slide the shampoo bottle over the edge of the shelf and then tip it upwards.

So, while I feel pretty good, I am not feeling all that well. I am happy, but still very sad about what is happening to my body. I am getting out in my power wheelchair, but I am more limited than ever when it comes to mobility. That's the difference between feeling good, and feeling well.

Sunday, 26 November 2017

Free At Last

To paraphrase Dr. Martin Luther King Jr., "Free at last, Free at last, Thank God almighty"... I am ... "free at last." 

I am home. Finally. No longer am I constrained by the strictures of hospital routine. No more vital sign checks every four hours. No more interrupted nights of sleep, awoken by the clatter and bustle of hospital staff hustling about in their appointed rounds. No more having to ask for assistance in turning in a bed too small for a body my size. No more early morning awakenings as shifts change at 7:00 AM, as early risers call for help, and breakfasts. No more meals on a schedule determined by hospital food services, in small portions and taste near impossible to withstand.

I am home. I sit in peace, only the whirring of my freezer motor breaking the near perfect silence. Calm. Glorious, wonderful calm. Space without curtains or stretchers or hospital equipment. My space. My things. My smells. My... everything. I sit, enjoying this time, waiting for the bustle to begin once again as guests arrive for to watch the Grey Cup and share happiness with me. My spirit near vibrates at the excitement of being, once again, independent, or at least as independent as I can be.

There is much to do, but I am in no rush to do it. There is ample laundry, left from my sudden departure to hospital. There is the spoiled food in the fridge, having gone bad over the two weeks I have been away. My table is littered with empty shopping bags, electronics, cups, water bottles, and all kinds of papers. Yet I will attend to none of this right now. For the moment, I will simply enjoy being here, relaxing with a coffee and Bailey's, something unavailable in a hospital.

I am tired, needing to fall back into my routine, needing to rest from the lack of rest while in hospital. This is another reason for me to take it slow. There will soon be people to help, people who will go to the store for fresh supplies, people who will sort, carry, and launder my clothes and linens, people who will tidy, put away, pick up, and toss out. I am incredibly fortunate to have these people around me. They keep me alive, keep me wanting to live. Without them, I would be unable.

Saturday, 25 November 2017

In And Out Catheter

Neurogenic bladder and a swollen prostate; that's what's keeping me in hospital. Actually, not specifically those things, but the outcome of those two things; I am retaining urine, lots of urine, as much as a full litre at times. That retained urine, full of protein and other stuff, inside a warm, moist environment, presents a wonderful home for wandering bacteria. I get bladder infections.

I thought we were through with all the nonsense until this morning. The new doctor was adamant that if I went home I would be back soon, with another infection. On the other hand if I learned how to catheterize myself, I would be able to empty my bladder, or at least get it to normal retention of 100 to 200 ml. With this happening, I would be less susceptible to infection.

So, as life would have it, today I am neither producing large amounts of urine, nor retaining large amounts of urine. They drained me this morning and I am being slow to refill. Some of it is the vagaries of bodily function, some of it is lack of fluid intake. I have been given a large glass of water and instructed to drink it. I am.

The whole self-catheterization, called an "in and out catheter" basically means that, three times a day, I have to insert a pliable tube into my penis and shove it up until it reaches my bladder, thus creating a free flowing tube to remove retained urine. Yes, it stings, but you get used to it. Yes, the nurses, male and female, have been doing it so far. Yes, I will be required to do it to myself tonight and tomorrow morning before I can be released.

No, this is not fun.

Friday, 24 November 2017

Adam, Meet Andrew.

When I was admitted to hospital the only place they could put me was on the Cardiac ward. If you consider it, that's not a bad choice. For the first day or so there was an elderly woman in the bed next to me. Then, after she was released, another elderly woman was in the bedspace for a few days. Then, earlier this week, Andrew became my roommate.

Andrew is in here for open heart surgery, a quadruple bypass. He had a heart attack a couple of weeks back and has been in hospital ever since. We've gotten along well thanks to similar senses of humour and a great deal of respect for the challenges our illnesses have caused us. I must say he has been decidedly patient and understanding around my bedridden needs such as diapering and the need for multiple position changes with nursing help all through the night.

Today, in random conversation, the talk turned to hobbies. Andrew is a bagpiper. I mentioned my brother was a piper too, and Andrew asked it his name was Adam. I was shocked! It turns out Andrew knows my brother Adam, and actually wrote a pipe tune for my Uncle Adam's funeral so my brother Adam could play it. Wow!

Of course the first thing I did was text my brother Adam, who could scarcely believe this coincidence. After some disbelief over text, I called Adam and put him on the phone with Andrew. They had a lengthy chat, and then Adam and I talked about how small the world could be. It's amazing if you think about it. Adam and Andrew meet in St. John, New Brunswick. Adam moves to Wilmington, Delaware then Lake Charles, Louisiana. Andrew moves to Lethbridge, Alberta. I move to Calgary and wind up with ALS. Andrew has heart trouble and the Lethbridge cardiac team sense him here to Foothills, where he is assigned to the Cardiac ward in the bed next to mine.

I love the way the world works some times! It is so cool.

Thursday, 23 November 2017

Five Years Of ALS

Five years. That's how long it's been. Five years and one day, really. Five years since I sat in the sterile hospital room, David and Elizabeth beside me. Five years since the young neurologist in residence changed my life forever with three simple letters. "We think you have ALS." After a mere moment to absord the news, she asked me if I knew what it meant. I did. I asked "How long?" Then, on that day five years ago, she said "36 months we think." They thought wrong.

Most people with ALS die within 36 months of diagnosis. So, for that young neurologist, that was her best guess. Their expectation is that I would be like most others. My legs were already pretty much gone. The disease would progress as quickly through my arms and into my breathing muscles, along the way stealing my ability to speak, eat, and drink. They thought I had "regular, plain old everyday ALS.

They were wrong.

One piece of advice I took to heart on that heartless days was from the senior neurologist, the one who confirmed the diagnosis before wishing me luck and releasing me from hospital. He said "If there is anything you want to do, do it sooner rather than later." I didn't know it that day, but I wanted to roam about the country, the continent, the world. I wanted to travel. I have always loved to travel, and, according to the neurologists, I didn't have a lot of time left to do it.

They were wrong.

They got almost everything wrong except for the path of progression. They learned from me, over time, their guesses getting better as I got worse. ALS has moved slowly up my body, stealing everything it can along the way. I has stolen my legs, my core muscles, my energy, my dignity, even my money. Today it is stealing my arms, my facial muscles, my shoulder muscles, my neck muscles. It continues to destroy my core muscles, even though much of their strength is already gone.

But I am still here. Most, some say as much as 90%, of ALS patients don't make this milestone, this five year mark. Pretty much everyone who was diagnosed around the time I was has passed away, or gone to mechanical methods to prolong their life, something I will not do.

I am not sure if I am happy or not about this extra time. Torture is not pain, or loss. Torture is time, time spent knowing what is coming next, but not knowing for sure when it will come. The time has made the torture of progression longer, giving me more time to feel the losses. It has also given me more time to live, to love, to laugh. It is a true mixed blessing. I'm not really sure how I feel about it. It just is. Just like ALS.

Wednesday, 22 November 2017

Only Three Days To Go

It's getting busy for me today. Already I have seen the psychiatric nurse. She interviewed me in advance of my seeing the psychiatrist. They've also taken out my catheter. We are all wondering how  my bladder will do now that it is working on its own. Most likely I will have to endure some level of "in and out" catheterization, depending on how well my bladder empties itself. And all of this before lunch.

The visit with the psychiatric nurse was interesting, and long. She interviewed me in some depth about my life, my childhood, my career, my family. She asked about traumatic events in my life, which brought to mind my college friend Bert Menger, the one who was murdered at a riverside camp I was asked to attend but couldn't because of work. She asked me a lot of questions about how I feel about living with ALS, and what other options I have considered for dying. This whole process was a bit emotional for me, bringing a tear or two to my eyes. To reveal ones life in vulnerability is daunting.

After lunch the nurses will give me a sponge bath. It's not as much fun as it sounds, however the nurses, both male and female, are nice enough. The usually chat to each other, paying no attention to me whatsoever, other than the routine of wiping and drying. Once I am cleaned up, I am going to get into my wheelchair, with their help. My friend Albert is coming at 2:30 PM. We'll go downstairs to Good Earth Coffee for a coffee and a date square, then we will practice our trivia knowledge with some Trivial Pursuit cards.

We are slowly working towards my release on Saturday. No particular time has been set. It will depend on when I get my last shot of antibiotics. They've been doing them every day at 5:00 PM so far, but I am hoping we can get it done at noon so I can get home. My apartment is likely a bit of a mess. There is laundry, some of it urine soaked, which has been sitting for a couple of weeks. I've already been in here for 10 days this time and it will be a full two weeks by the time I get out.

There is no doubt. I am looking forward to getting home, to sleeping in my own bed, to eating my own food, to enjoying my quiet space. I'm looking forward to visits not stilted by the presence of hospital gear or me in bed. I\m looking forward to a nice glass of wine with dinner. Only three days to go.

Tuesday, 21 November 2017

Grey Sky

I'm feeling a bit more like writing today. I don't know if it's the indolence and sloth that arises out of spending all day, every day, in a hospital bed, getting out into my wheelchair only on occasion; or if is the gloomy grey skies that spead from east to west, blotting out the sun but for a faint glow behind the sky's skin of cloudy steel. Either way, I just have not had the motivation or stimulation to write.

When I say stimulation, I mean that very little is happening to me here in hospital. They kept me here for my own sake, a response to my immobility, thinking it would be better to treat me in hospital rather than asking me to go back and forth from here on a daily basis, and that it would be easier to transfer me to the ALS Clinic and the ENT Clinic from hosital, rather than from home, given the foley catheter and IV line for antibiotics. Between these few events, I mostly sleep, read, or watch Netflix.

Nonetheless, I cannot claim this rest has not been good for me. Even with all the night noises and interruptions, I am getting almost enough sleep. More importantly, my body has the time and energy to finally heal itself. Were I at home, I would be active, wearing myself, using my energy to do things instead of to heal. I am definitely healing. For one thing, I don't think I have seen my urine so clear in months. I am used to it being clouded, at times with a bit of blood in it. Not now, and this convinces me I have been fighting infection for a long time.

I know that the grey goss sky, a flat cap walling off the sky from space, the earth from sun, will pass, most likely in a day or so. By the time I go home on Saturday I am hoping to feel even better than I do now, to have improved in energy and health. I may have ALS, but I don't have to feel bad to go with it.

Monday, 20 November 2017

Nothing

I didn't write yesterday. I didn't feel up to it. I don't really feel like writing today either. Maybe I am running out of things to say. Maybe my hospital life is so routine, so boring, that there is nothing to say about it. I am slowly getting better, but that is to be expected. The laxitives are doing their work. The catheter remains in without event. The hospital staff are excellent, caring, and careful. There is little to say.

Plus, I'm tired a lot right now. The other night I did not sleep well, so it will take a few days for me to regain that lost energy. Maybe that's what it is. Regardless, I feel like I have nothing to say, so that's what I will say. Nothing.

Saturday, 18 November 2017

Looking Out The Window

My days in here are tedious, long hours spent mostly sleeping or watching Netflix on my laptop. I am so grateful for the technology which allows me to escape the desert wasteland of commercial TV, especially the major broadcasters. At least the hours I fill, I fill with something I want to watch instead of forced reruns of bad sitcoms and poorly written television drama. Still, there is only so much distraction one can take.

The medication process has become routine, closely matching my life at home, with pills in the morning and pills in the evening, along with injections of antibiotics into my IV once a day. I've not had a bowel movement for several days now, so we have added Metamucil and a laxitive to my daily routine as of yesterday. I, along with all the hospital staff and doctors, am hoping for results in the near term. Personally I think my bowels have gone on strike, in opposition to the indignity of the expectation that I should fill a diaper rather than go to the toilet on the commode chair. The nurses and staff are having trouble with the chair, and would rather clean me up than make the transfer.

On the upside, the lady in the bed next to me has been moved. Her departure means it is possible for me to move next to the window, a highlight for me. She has had a serious stroke and I suspect she has been moved to some sort of long term or rehabilitation setting. For the first time since getting into the hospital, I can see the outside world, a true bit of joy for me. Once again I get to see the outside world, to know that my existence extends beyond my curtained space.

Since it is Saturday today, I am expecting any number of visitors. I have declined to go into my wheelchair for the moment, hoping to leave that seat for guests. Once things settle down, I will likely get in the chair, perhaps later in the afternoon, and head down to the Good Earth Coffee Shop in the lobby for a coffee and date square.

Then comes Sunday, then the rest of the week until Friday. It is what must be done.

Friday, 17 November 2017

Bite Your Tongue

My time in hospital has not been relegated solely to the issues of belly problems and vertigo. I went to the ALS clinic on Wednesday. The major reason was to get the MAID process underway, however there were also the usual checks and measurements, one of which is significant.

I have been complaining for some time about loss of fine muscle control of my tongue and lips, especially on the left side of my face, in fact exclusively on the left side of my face. Some around me have dismissed this complaint, telling me I eat too fast, that I should chew more carefully, or that I needed to take smaller bites. What most of them failed to see completely is that my chewing, bite size and speed of eating has remained unchanged for the last 40 plus years, and rarely did I bite myself over those many years.

In the last month or so I have also noticed the slightest feeling of wieght increase on the left side of my mouth. My lips just feel heavier on that side. So I asked the neurologist about it and he confirmed that I have muscle loss on the left of my face. I've also noticed fasiculations across the bridge of my nose, of all places. This confirms that ALS has been attacking my face for quite some time now.

The real horror of this is that I am now forwarned. After ALS has pretty much destroyed my arms, it will go after my head and neck, destroying my ability to eat, drink, speak, even nod my head. It has already started. I will lose all ability to communicate, since, by that time, my hands will have failed me completely. This will be a slow process, giving me the continued ability to know, understand, and feel the pain of this loss daily.

Next time I say something is failing me, please put aside your dismissal and keep your opinions to yourself. If I say something is happening, even if you can't see it, even if you don't believe it, even if you want to find another excuse for it, believe me and try to understand what I feel. Nobody knows my body better than me. My hands shake because of ALS, not aging. My arms are weak from ALS, not lack of exercise. My hands shake because of ALS, not because I am getting old. I bite my tongue and lips because of ALS, not because of how I eat.

Thursday, 16 November 2017

Nine More Days

Well, it's confirmed. I will be in hospital until at least November 25. The intent is to keep me on IV antibiotics as well as keeping a Foley catheter inserted in me until at least sometime next week. It means continuing to deal with being stuck in bed, although I hope to change that today. I have my manual chair here, so at least I can get out for a coffee in the Good Earth cafe downstairs. It means having to poop in a diaper, since they can't figure out how to transfer me to the toilet safely, and it's a lot less work for the nurses to clean me up rather than to transfer me back and forth.

All in all, hospital time is tedious. Hours and hours of nothing but interruption. I need help turning over in the hospital bed; this bed is not wide enough for me to roll over. They put meals in front of me which I can barely tolerate; non-existent breakfast, mediocre lunch with dry sandwiches, and dinners which defy description at times. To be a food lover while in hospital is a terrible kind of torture.

I think the toughest thing is feeling trapped, both physcially and psychically. While I have my wheelchair here, there is no chance for me to go anywere but down the hospital hallways, past rooms of patients equally as trapped as I am. From my bed I cannot see a window, see outside. The curtain separating me from the second bed in my room blocks the window.

Speaking of second beds, there is an elderly woman in the other bed in this two bed room, laughingly called semi-private. There is nothing private, even semi-private about this or virtually any other hospital room, unless you are one of the rich and powerful. For them, they have single rooms with private, attached bathrooms. The elderly woman on the other side of the curtain doesn't care. She has had a serious stroke, potentially and likely fatal. Her family is constantly coming and going, as they should, getting that one last visit in with mother or grandmother as it may be.

In another 9 days I will return home, to whatever state it may be in. I left it in a mess, thanks to ambulance crews and a lack of planning. But then again, these kinds of hospital trips are not often planned. No matter. Home Care will come and tidy up. I can do laundry. The fridge will have to be emptied, spoiled food thrown out. I'll be busy when I get home. That's something to look forward to.

Wednesday, 15 November 2017

War Is Hell

It's been a tough day today. It was a bad night last night, which is mostly why today was tough. I slept very little, fitfully when I did, for short stints of perhaps an hour at best. My bladder is acting up again and the hospital staff have no clue when it comes to handling external catheters. So I was peeing almost constantly, soaking pad after pad after pad. My nausea was no better, not was my dizziness any better. It all continued by day.

It now seems to be the opinion of the medical team that we should treat this continuing low grade bladder infection seriously, thanks to a bout of fever last night. They are concerned it could break out into a full fledged infection and possible sepsis. It's happened before. What they will do differently this time is treat the infection agressively, with IV antibiotics over a period of 10 days or so, basically going to war against my own bladder. At the same time they will keep me on an inserted foley catheter to maintain bladder drainage.

This approach mostly arises out of the CT scan the other day, or was it yesterday. I don't know anymore, as one day melds into the next. Regardless, the CT scan showed a bladder that was inflamed, retaining urine in pockets of swelling along the bladder wall, urine which hosts all kinds of bacteria, ready to jump up and grow given the least opportunity. The inflamation is so bad that it is affecting the rest of my internals.

They are still concerned about c-difficile. So what they want to do is obliterate the bacteria in my bladder, get the swelling down, and essentially dry it out. Basically they want to give it a rest. What that likely means is another 10 days in hospital, another 10 days of tests and waiting. It's tiring being here; I am sleeping as much as I can whenever I can. As they say, war is hell, especially when you are at war with your own body.

Tuesday, 14 November 2017

Just Not Today

It's conclusive. The doctors are not sure why my belly is hurting. They have no idea why my bowels are acting up so badly. And when it comes to the vertigo, they won't make a conclusion as to the source. There are a couple of options, but neither of them really matters. I have vertigo, and there is nothing they can do about it. In other words, I could have told them that.

The current strategy is to try and figure out what is going on with my belly. The tests show no sign's of c-difficile, even though I had all the right symptoms. Those symptoms are now mostly gone, I think due to the probiotic diet and apple cider vinegar Chris Gordon provided me last weekend. The only remnant symptoms are the lack of bowel control, something which is slowly resolving itself, and the pain in my gut on the left side.

For the bowl control, the elite group of medical professionals here have decided a probiotic diet and some metamucil would be the best approach. For the dizziness, they have recommended I start taking gravol on a regular basis. As to the gut pain, they have scheduled a CT scan to see if I have diverticulitis or some other internal ailment as yet undiscovered.

My own feeling is that all of this began with over-aggressive use of antibiotics. These powerful medications damaged my gut, creating c-difficile like symptoms, along with damaging my inner ear on the right. The only thing that can cure these issues is time, feeding the body proper biotics and rebuilding the biome in my belly.

It reminds me once again of that scene from Star Trek where, in walking into a trepanning, "Bones" McCoy shivers and refers to current medical practice as "barbaric". I have learned once again that there are very few things doctors really cure. They use clumsy tools at times, treating things they can't diagnose all that well, and hoping the body does the real work of curing itself.

This, in no means or in no way, suggests that I don't appreciate or value all that the medical system is doing, or has done for me. It's just a simple recognition that we know so little about our own bodies, so little about the nature of disease or illness, so little about how to help our bodies heal. Our modern tool set has moved is forward from the Dark Ages of medicine, where cures were often worse than disease, and generally had little effect. Medicine in the 21st century has come along way.

Yet even with our modern technology, even with what we are learning about how our bodies function, even with drugs to treat so many diseases, we still have so far to go. There is much to do, and many people are doing it. One day we will have prodedures and treatments which do no harm while doing so much good. One day we will have true cures for cancer, ALS, and so many other diseases. Just not today, when I need it.

Monday, 13 November 2017

Resting As Much As Possible

It's been a long day, difficult and tiring. This being perpetually ill nonsense takes so much out of me. Even now my left butt cheek is sore; I think I might be developing a pressure sore down there somewhere. I'm not real sure, but then again, these days I am not sure of any health factor. I'm not sure how long I will be in here, but it feels like I might be in for a long haul.

The issue is that I have presented with multiple complaints, some of which might be linked to others, some of which might be the outcome of others. It seems my blood work is "a mess" according to the doctor supervising my care. She tells me my white cell count is too high, my red cell count is too low, and there is some sort of bacteria in my blood. On top of that, they are no longer so certain about c-difficile, even though I have all the right symptoms. In other words, they are not certain what is wrong with me, and getting less certain as time goes by.

Today began at 4:00 AM when I was awoken in ER to be told I had a bed. It's upstairs, in the Cardiac Ward. Perhaps this is appropriate as they have been monitoring my heart quite closely. They even had potassium in my IV overnight, working to keep my heart rate steady and to replenish the potassium lost through diarrhea and general illness. They were filling me with water, so much so that attaching an external catheter seems to be the best way to push water out of my system.

As soon as they got me upstairs, I noticed swelling in my left arm. The nursing team suspected that the potassium had impacted my arm, irritating the vein with the IV in it, causing the fluid from the IV to go into my muscles instead of my heart. So they pulled the IV and decided not to put another one in. Part of this decision was based on the fact that I am a "hard poke", meaning its tough to find a workable vein on me. Each IV generally requires three or four pokes to work.

The rest of my day I rested, at least when nursing staff weren't taking vital signs or asking me the same questions I have answered a dozen times already. My friend Albert brought me Timmies and a couple of Honey Crullers for coffee this afternoon. Then Tonny brought me an A&W Burger with both poutine and onion rings for dinner. It was so much better than the stuff they call food here at the hospital.

For now it's a "wait and see" game while the doctors try to figure out how to treat my various symptoms. We don't want more antibiotics with the situation in my gut. There is very little they can do about the vertigo except wait for it to go away. So I will likely be in here longer than hoped for. This is not a bad thing, the decision being that it would be better to treat me here rather than send me home and ask me to go the lab every day for tests. The vertigo shuts that down. So here I will stay, until at least we have some sort of treatment plan. And here I will rest, as much as possible.

Sunday, 12 November 2017

Back In The Saddle Again, Or Hospital If You Will

I'm back in the saddle again, when it comes to my blog. I'm also back in the hospital again. This is becoming an all too regular occurence, calling for an ambulance, coming into the ER, and eventually being taken upstairs for "observation and possible medication." Over the last four weeks I have been in three separate times; once for a bladder infection, once for a follow up complaint which may or may not be c-difficile, and this time for the added fun of vertigo. This does not include the two calls to 911 for help at home.

I went through something like this last fall as well. I wonder if it is related in any way to flu season, or just the geneal time of year. This year the symptoms and complaints have been more challenging. The medications I was given for the original complaint, the bladder infection, seem to have cause a severe stomach issue, most likely c-diff, but maybe not. The antibiotics given to me to combat the bladder infection also seem to have damaged my right inner ear, leaving me incredibly dizzy almost all the time.

This visit, while not what I would call fun, had been better than the previous couple. The hospital staff are taking extra precautions to ensure they don't get sick from me and I don't get sick from the hospital. My HCA's are doing the same. We are all concerned about what is happening to my stomach and body in general.

As is usual with hospitals, the food is less than ideal. I have decided to skip dinner tonight; I simply cant stomach a fake pork roast with fake gravy, a dinner which doesn't even stand up to the quality of Swanson's. On the other hand I am having much better luck with nursing care. They are the kinds of nurses I have come to expect here at Foothills. Certainly there are personality difference, those I prefer and those I do not prefer, but this time I have been mercifully free from the Nurse Ratchett syndrome. Instead of giving me hell for peeing in my diaper because it makes work for them, they have been compassionate, understanding, and helpful in what is, for me, a difficult situation.

I'm hoping to get out in a couple of days. I'm hoping they can figure out what to do with what we are now calling vertigo. I'm hoping they can help me with the pains in my gut. The long and short of this is that I am having "normal person problems" simply compounded by having an ALS body. I'm certainly hoping my body can get better soon.

Friday, 10 November 2017

How It Is

I continue to struggle with illness, last night and this morning especially. I have virtually lost all control over my bowels, living at the mercy of chance and diapers. I am wearing a catheter full time as the new aductors on my wheelchair, the things meant to keep my legs from flopping out to the side, are too effective. I can't spread my legs wide enough to pee into my jug. The nausea is almost constant. The dizziness continues.

I need to see a doctor the inner ear damage from the gentomycin, most likely with a referral to an ENT specialist of some sort.. I'm waiting to hear from the ER doctor about what antibiotic they want to put me on to help with the damage done by previous antibiotics. In the meantime I continue to deal with an explosive back end and poor targeting when urinating.

This will likely not kill me. But right now, I'm wishing. Now, in addition to having a terminal illness, I am really sick. I'll keep going until I have to stop. That's just how it is.

Wednesday, 8 November 2017

Meniere’s Disease

I have not written yet today for one simple reason. I have, so far, been unable to maintain focus on the computer screen. I have been plagued with dizzy spells today, ever since I was being dressed by my HCA this morning. Most of my day has been spent laying back in my PWC with my eyes closed, drifting on the edge of sleep, periodically being jerked awake as my arm fell by my side, banging into the table or the PWC or just flopping off into space. In those waking moments I would open my eyes and the world would continue to spin in front of me.

There are people who would pay good money for this feeling were it in some sort euphoric drug that went along with the spinning world. Oh wait, I have some of that stuff in my cookies in the fridge. However this is a feeling I really don't like. This dizziness is debilitating me today, making it impossible for me to write, right up to a few minutes ago. Now that the dizzy spell is passing, I am slowly regaining my faculties. Sleep is still high on my list, however I am now more able to face my activities of daily living.

Why this is happening, I know not. It could be a reaction to medications, the fallout from my accidental overdose on Sunday night, giving me a late but sudden drop in blood pressure. It could be hypoglycemia, though unlikely. It could be any number of things. It could be an inner ear problem, more likely with me thanks to the impact of the gentomycin used to treat my bladder infection at my last hospital visit. Fortunately dizziness is common and, in most cases, resolves itself as the body comes back into equilbrium. It's happened to me before, just not quite as powerfully.

I'll be okay. I need to do what my body needs to do. I've been resting all day so far. I'll take it easy this evening. No alcohol. No vigourous activity; that's out anyway. |I should probably go to the audiologist to see if there is anything wrong in my inner ear. On the other hand, I suspect, as this has been a life long problem for me, that there is nothing to be done. I talked to my own GP back in Abbotsford about dizziness attacks long ago and he suggested Meniere’s disease, an illness of the inner ear with no known cause and no real treatment. Sound familiar?

Tuesday, 7 November 2017

More Loss Of Ability

My Lord, this is a nasty infection. I am just beginning to understand how nasty. It is likely to be a month or two before the infection itself is finally cleared. In the meantime I will be struggling with belly pain, nausea, frequent urination, and, oddly enough, a combination of diarhhea and constipation, my bowels bouncing from pillar to post through a mix of C-Difficile and Pepto Bismol.

Then there is the exhaustion, not just from ALS but from a weakened body fighting a nasty bacteria. This whole sickness thing is wearing me down faster than anyone can imagine. Last night I was unable to prop myself up on my elbow while laying in bed, something which has been slowly fading from my repertoire regardless. I am convinced this loss of ability has been moved along by my body's fight with C-Difficile.

Of course there is always the possibility that the doctors initial diagnosis is incorrect, that I don't have a C-Difficile infection, that my symptoms are from something else completely. If that is the case, I will surely look the fool, having made all this fuss. Still, something is making me feel like this. Something is causing the symptoms. Whatever it is, if it is not C-Difficile, seems to be doing a real number on my digestive tract. The other possibilities, such as kidney damage or damage to my lower intestines, are just as scary, if not moreso.

In the end, this is another of the many ancillery effects of ALS. I got the bladder infections from being in a wheelchair and having urination issues. I got the C-Difficile infection from having to go to the hospital, from having to use multiple anti-biotics, from what not else. While being ill makes me weaker, this weakness is here to stay. The main rule with ALS is that once you lose something, regardless of cause, you don't get it back, no matter what you do. ALS is a disease which constantly takes; it gives no ground in the battle. That's just how it is.

Monday, 6 November 2017

Today's Illness Update

Okay. I've eaten my probiotic yogurt. I've taken a couple of doses of Pepto Bismol. I've had a half litre of water to drink. My tummy still hurts, but it seems reasonable that I should get on with my day. It includes recovering the requisition for a stool sample to go to the lab, perhaps a visit to the medical clinic about 2 miles away with a bus trip to get there, and, possibly, doing some laundry. That's plenty for me.

I really am reaching my limits of tolerance when it comes to this particular bout of illness. It's tough enough to have ALS, but to have a belly ache, to be constipated, to feel like I am going to throw up almost constantly; this goes beyond what I can take. I have seriously contemplated not treating this infection at all, just letting it get really bad and then dying from kidney failure. I mean, how could that be any worse that what I am going through right now?

Of course I won't do that. It is not in my nature to surrender so easily. While my reason for living are becoming more limited each day, I still have enough in my life to make me look forward to, if not tomorrow, next week. While my quality of life is becoming severely compromised, it's still good enough that I can enjoy a day, even a day like today where I am ill and in pain. What I have to do is get the energy and effort out to do the tasks that need being done.

That's where it gets trick; the tasks that need being done. I have been constipated lately. Last night I finally had a bowel movement, the first one since Friday morning. Thanks to the Pepto, the Immodium, and whatever else might be pounding at my gut, my stools are hard and black, with yellow stripes in them. Good God! I'm shitting a Bumble Bee! No wonder it hurts so much.

I'll get through this. Or maybe not. I have absolutely no control over my own body any more. I can't "walk it off". I can't drive over to the doctors offices. I can sit on the commode chair for 4 hours, but I can't push anything out, which is kind of cruel in it's own way, because on Friday morning I couldn't keep anything in. And I definitely don't want to go back to the hospital. That's how all of this began.

Sunday, 5 November 2017

Anger Happens

It has been suggested  apologize for my blog post of Friday, my distressed blast at doctors, nurses, hospitals, et. al. I can understand that suggestion. I blasted the very people who have, up until the last couple of hospital visits, been providing me with excellent health care. I howled about the very process which makes it possible for me to keep going in spite of a terrible illness. I get it; I need to be thankful for these people, not blaming them for things over which they have little or no control.

Apologies aside, the truth is I am tired of all of this, tired of seeing doctors, tired of dealing with hospital staff, even tired of the superiour care I get from Home Care. I am very upset about coming out of hospital only to find myself worse than when I went in. Mostly I am just tired of having ALS and all the other stuff that goes with it.

Once again, the truth is that there is very little the health care system can do for the proximate issue, that of having a progressively nasty terminal illness. This is a tough way to die, and even a tougher way to live. The doctor did not give me ALS. He had nothing to do with the possibility of C-Difficile, other than having the bad luck to be the messenger. Perhaps the nurse I had issue with has problems of her own she is dealing with; we all come as a single unit, sometimes its hard to leave your personal stuff behind. I know it is for me, for sure.

So, rather than apologize for saying how I was feeling, let me once again say what I have said in the past. I recieve world class health care, with little or no cost to me. I am treated well, mostly, by the system, rarely waiting for care, and only this recent experience had anything negative to it. Prior to this, I have always been impressed with what seems like the best health care you could get anywhere on the planet.

I was feeling really angry and upset on Friday. While it was triggered by events in the hospital, that underlying anger has more to do with me and ALS than anything else. When you are trapped with this anger, this distress about having ALS, there is no place to put it. Sometimes it comes out, whether you like it or not. It's the same as for the hospital staff. When I am distressed, there is nothing they can do about it. I come as a single unit; sometimes it's hard to leave my personal stuff behind. Somtimes I get angry. It doesn't make it right. It just happens.

Saturday, 4 November 2017

Still Here

Yesterday was not a good day. Yesterday is yesterday, it has passed and gone. Today is a new day, a new start, a new time to make the best of where I am, of how I am living, of what I have in my life. Today is an opportunity for a good day, even though my tummy still hurts and my bowels remain uncertain.

The thing that makes a good day is to remember the good things that happen, and to forget days like yesterday. Today I have Chris, Chris and Dianne visiting with me. Today Sam, my HCA, came in and looked after me, tenderly and respectfully, kindly and carefully. She doesn't make me feel ashamed or embarrased to have what I have, to deal with the mess and fuss. Tonight Cabira, my evening HCA, will come to change me, perhaps to clean up another mess, and to help me get ready for bed. She will do the necessary things with a smile, finding humour in the midst of difficulty, making me smile along with her. These are the things which make a good day.

It is snowing outside. I will sit, drink my coffee, and enjoy the small dry flakes blowing past my window. I will be warm in my snug apartment, safe from the dangers that lay outside my doorway. No, I am not frightened. I know I am not alone in dealing with ALS. This disease is carried not just by me, but by all those around me, all those who care for me, who love me. I don't have to bear this burden alone, nor deal with the struggle by myself. I am not alone

The chill of winter has come. Ice forms on the sidewalks and parking lots. I have to bundle up to go outside. Even in this I have help if needed. My neighbours are there for me, often helping me with the smaller things, sometimes the bigger things. While the snow and ice may come, I am held in the warmth of those within my life.

Today will be a good day. I've already decided that. All I need to do now is look for it. It will be there, amidst the snow and ice, warming the inside of my life, covering me in its blanket. There are more good days than bad days. I am still here.

Friday, 3 November 2017

God Damned Hospitals!!

I have just gotten home from a day trip to the hospital. God how I hate hospitals. I hate doctors, and nurses. I hate these charnel houses of sickness where treatment and cure are more myth than fact. I hate that there is nothing any of them can do for me, except perhaps make me worse.

As predicted by an online follower, I have a C-Difficile infection. Provided to me courtesy of Foothills Medical Centre, and multiple doses of overly strong antibiotics. Served up by putting me in a crowded, four person ward in my last visit, in spite of protestations that I am prone to infections, in spite of my warnings that placing me in a regular ward was almost a guarantee for additional problems.

I'm angry. I'm angry at the institutionalized insensistivity of nursing staff, leaving doors open while undressing me, making me feel awkward about having to pee in a diaper, placing their needs and feelings above those of the patient. I am angry about porters who pick you up and drop you off in various holes in hallways and darkened rooms without saying a word or noticing that your feet are hanging off the end of the stretcher.

This whole day, this whole infection, could have been completely avoided by proper cleanliness and care. It would have reduced the strain and stress in my life substantially if someone in that God Damned hospital has simply paid attention to me when I was in there the other day.

I am just so tired of all this bullshit. Cure me or kill me, but please stop making a bad situation worse.

Thursday, 2 November 2017

Labels

Bleh. My tummy is still bothering me. I have found an unfortunate correlation between my tummy troubles and the times I take marijuana, either in cookie or candy form. My arms are tired, my feet are tingling. It's just that kind of a start to a day. On top of it all, I'm a bit upset; not the tears and sadness upset, nor the anger upset, just sort of upset.

The reason for the upset is one of my small serving dish. I've had this small, two section serving dish for many years. I brought it to Calgary from Abbotsford, and had it years before I left. The other day I dropped it and broke it. The reason I dropped it and broke it was because I was trying to take it off of the high, corner shelf where someone, either a guest or a Home Care worker, had placed it. It was in the wrong place. I wanted to put it in the right place.

In order to get the serving dish off of the high, corner shelf, I used a grabby stick. It all started out well. I had a fairly good grasp on the dish with the grabby end of the stick. I lifted it out and off the high shelf. Then, about half way down, I lost my grip with the grabby stick and the dish tumbled to the counter, breaking into pieces once it hit.

The loss of this small serving dish means nothing in terms of actual value. It was an old dish, well used. It had no value as an antique or special object. In emotional terms, however, it represents many things. It represents the losses in my life of all that I have had for so many years. It represents the difficulty I have with dropping things. It represents the frustration in my life with things put away in the wrong place.

So I have dediced to take action, action suggested by Andrea and others over the last year or so. I am labelling all of the shelves in my kitchen with labels listing the shelf contents. Chris is helping me do this. I am using the label maker Andrea provided for this. Unfortunately it kind of makes my kitchen look like achurch kitchen or community hall kitchen, with labels everywhere. I don't like it, but I dislike the misplaced dishes even more. I'm tired of breaking things, of losing life long posessions. So labels it must be.

Wednesday, 1 November 2017

Enough Is Enough

I'm feeling a bit beat up and tired today, as if everything I do takes an extra bit of effort to get it done. I didn't sleep all that well last night eithe. Having gone to bed at 9:45 PM, I watched a bit of Netflix on my phone, finally feeling like sleep at 10:30 PM. So I shut things down and tried to sleep. The hourse rolled by until, finally, at around 1:00 AM I took a sleeping pill.

The weakness I feel is particularly in my left arm. This morning in the shower I was unable to lift it above my head, unable to use my left hand to wash my scalp or spread shampoo. Unltimately I gave it a bit of help with my right hand, thus getting both hands involved in the hair washing event. When I was done, I moved my left hand to the side of my head and it flopped down, not quite useless but certainly limited in what it would do when asked to reach above my shoulders.

Even my fingers are feeling weak today, the effort of typing noticeable for the first time. Both the muscles and joints hurt, a maddening combination of arthritis due to aging and muscle weakness due ot ALS. Fortunately as I type I rest my hands on the laptop surface. Were I compelled to hold my hands up as I type, the way they taught is during typing class in high school, there would be few words exiting from my fingertips today.

It is important to note here that is is not my mood in decline. I am not down. I am not depressed. I am not dreary. The weakness in my arms and hands does not indicate any weakness of mind or spirit. I'm in a good mood, but for the ache in my arms. Perhaps a half cookie is in order to ease the pain, or better yet one of the new candies my cousin sent to me. I'll let you know how it works out.

There are going to be more days like this, more often, as my arms move from partial to complete loss, as my fingers begin to fail more consistently. Soon there will be nothing functional left of me, except possible for slurred speech and blinking eyelids. That's will be it. It's coming; I can see that train clearly. While I may be unable to move from the tracks, I'm actually looking forward to that train getting closer and closer, finally finishing this voyage. Enough is enough.

Tuesday, 31 October 2017

Death, Life, And The In Between

My friend Dianne's Dad passed away yesterday. She and Chris are here this week, in anticipation of this happening. Today is their day of dealing with estate, lawyers, funeral arrangements and all of the little things that go with the legal side of dying. It reminds me of the line, "I you like someone, remember them in your will. If you dislike someone, make them the executor."

Of course the passing of Dianne's Dad has triggered a lot of thought in my when it comes to my own demise. I want things kept very simple. Peter, my brother, as executor of my estate, has the full power to do whatever he thinks best. I trust him. Since there will be little or no money left, a funeral, especially an expensive funeral, is out of the question. That is in line with my wishes, so it's a good thing. What I really want is for my friends and family to gather at my apartment, drink all my wine and liquor, empty out my freezer, fridge, and pantry, and throw a hell of a party. My children should have first choice of any of my possessions, although there is not much.

I find it interesting how varying people react to death. As you would expect, family members go through the greiving process. Then again there are situations like mine, where greiving is almost an ongoing process. For others, there are two questions they ask almost without fail. "How did he die?" "How old was he?"

The "How did he die?" question is more of curiousity than any need to do some sort of emotional autopsy. The more interesting thing is the need for people to know how old someone was when they died. It's important. It helps us put a death in perspective. If someone dies at 91, that makes sense to us. We all want to live that long. When someone makes it that far, it encourage us, reminds us that we have that chance too.

Then there are those who die "young", giving us pause to wonder about our own longevity. This is such a relative term. There are very active people who die in their 70's, and that seems young, especially when life expectancy in Canada is 82. I will likely die at age 62 or, if things go very well next year, 63. In today's world, that is young, young enough that I won't make it to pensionable age. It is these deaths, the abnormal ones, the ones which fall outside of our expectations which give us pause, causing us to remember that life is fragile, that life can be lost at any time.

Death comes to all of us. Our lives are limited. It is the way of things, be it early or late. The best any of us can do is hope for a peaceful, painless passing after a long and productive life. Yet we have no control over this. Fate is inexorable. It weaves a path for us, and then we die. This is life.

Monday, 30 October 2017

I Feel Good

I feel good this morning. I won't go as far as to say I feel better. My tummy, while getting better, is still sensitive.My bowels still feel moderately explosive.  My left leg was particularly stiff this morning. And I still have good old ALS to make my day. Yet with all of that, I'm doing all right.

Part of this is that Chris and Dianne are visiting me. Having such good house guests, and a friend who has known me forever, certainly makes life lighter. And of course Monday is sandwich day and Kathy did well in making them for me. I got a good night's sleep without taking a cookie or sleeping pill. I managed to go all night without soiling myself or my bed.

One of the great things about Monday sandwiches is that Kathy uses a lot of meat and cheese in them. It means my Monday's start with a real protien boost. Home Care has a limitation on food preparation. They are supposed to make a light breakfast, meaning toast or cereal, perhaps a coffee. There is such a low nutritional value in that kind of breakfast that I might as well just stick with coffee alone. Yet that lack of substance along with the absence of protein leaves me without energy, sluggish, unable to build enthusiasm for anything.

These days, as I contend constantly with the exhaustion of ALS, having moments like this, where I feel good, thanks to food, company and good care, are the simple high points of my day, and week. This disease is unremitting. So feeling good is a wonderful thing, not just a break from the strain of living with ALS. It's like a ray of warm sunshine on a chilly day here in Calgary. It happens often enough, yet it seems so special in that moment when it does happen.

Life is getting increasingly difficult for me. But with the care, compassion and help I get from Home Care, from friends, from family, all of it makes a difficul situation so much more livable. And I feel good.

Sunday, 29 October 2017

There Is No Fairness

I hate this being sick while being sick. I am still struggling with a sore belly, although it is getting incrementally better with each passing day. Last nigh, as my Home Care Aide put me to bed, things came to a kind of head, with my rear end releasing all the pains of the days rather suddenly. Alas, there was not enough time to get me back into the sling. In fact even the attempt sped things along, making a difficult situation even messier. In the end, if you willf forgive the pun, she just cleaned me up.

Today I am still dealing with lower end discomfort. I am feeling better, just not good. I suspect a few more days and whatever it is attacking me from within will have passed, leaving me once again to deal with the simple challenges of ALS. But you never know. My body is slowly failing me. I have no idea what will happen next.

One of the most frustrating things with ALS is the way it imitates and hides other things. Weakness from a stomach ailment could just as well be weakness from ALS. Lack of appetite from some other illness could just as easily be lack of appetite from ALS.. Exhaustion from battling some infection or other merely blends into the perpetual exhaustion of ALS.

I would like to say it's not fair, except that there is no "fair". Fair is a human emotional construct. The human body, daily existence, life in general, these things know nothing of fairness. Life just fulfills its random function, carrying on in spite of how you think it should be. I think there's a lot of unhappiness where people expect life to be the way they want it without realizing that it won't conform to their wants or need for fairness.

I could be very unhappy with this perception of unfairness. I could wail and complain about how my life has been wrecked or how my body has failed me. There is no point. What I do instead is accept that this is how I will be today. Tomorrow will be different. Nobody knows how; all that is random.

For now, however, I would be very happy if my tummy would get better and my energy level would build up a bit. We'll have to see. There are no guarantees.