Thursday, 18 January 2018

Another New Normal

There was blood coming out of my penis this morning. It happened after the in/out catheterization, so it's almost certain the HCA scratched either my urethra or bladder during the insertion process. To steal a comment from my brother when my Dad had a similar problem, "That's not normal, is it?"

No, it's not normal, at least not for normal people. But I am no longer normal in any sense of the word. No normal person has his or her bladder drained twice a day with a catheter. No normal person is on three different blood thinners and anticoagulants. No normal person lives his life with the kind of intrusive treatment I get on a daily basis.

Getting knicked by a catheter is normal, for those of use compelled to use them. Every now and then you are greeted by the sight of blood in your urine. What you learn to do is check it for colour and density. Bright, fresh blood is not so much a problem. Old, clotted blood means it's been there a while. That's a bad thing.

You know what else is not normal. Living in a wheelchair, having people come in twice a day to change you, to get you out of bed or put you back into bed, having someone put on your shoes or take off your pants, having to wear these God damned compression socks. Yet all of this is the new normal for me. Just like the blood coming out of my penis this morning.

I don't like this new normal.

Wednesday, 17 January 2018

I'm Not Really That Cheerful

I'm tired. My fingers hurt; arthritis or ALS, I'm not sure. My hands are weak, as are my arms. Typing is slowing down, my fine motor movements becoming increasingly difficult. The muscles in my right shoulder are in constant pain from muscle pulls as the few remaining work extra hard to accomplish what a collective of musculature once did for me. My neck is weakening, so my head feels extra heavy most of the time. I'm using the head rest on my wheelchair increasingly.

My HCA just left. I'm moving a bit slowly today, not responding as cheerfully or as quickly as usual. As she left, her comment was that I am usually such a cheerful person. I guess this is true, at least on the surface. Laugh and the world laughs with you. Cry and you cry alone. ALS is very much a "cry alone" kind of disease, so I constantly wear the mask of cheerfulness.

My reality is much darker, much more bleak. My predominant emotion these days is sadness, followed closely by immense frustration. Deep in the back of my emotional landscape is anger and bitterness, far enough back that most people don't see it, or feel it. But I do. I feel all of these things and more, all the while producing this false front of cheeriness and happiness in the face of tremendous destruction.

It's getting more difficult as I see more clearly my end of days. I count in days and weeks now, at best. While I want to live a long time, my reality is somewhat different. It's getting difficult to pick things up, such as a cup of water or coffee. I wear out easily when engaged in physical activity, so I don't get much done in a day. I'm now trapped in a wheelchair without a lift function, so everything above chest level is beyond me.

How do I feel? Not good. How do I keep going? I don't have much choice. Why do I seem so cheerful? What else should I do? Be grumpy, miserable? Should I let my frustrations spill out onto those around me? What I really should do is simply die. That would be the easiest solution. The problem is that I don't want to die. So the easy route is closed to me. I will take the more difficult road, living until I can live no longer, dealing with this devastated emotionaly landscape as well as I can.

Tuesday, 16 January 2018

Lost Time

I've had a challenging few days recently, especially around time and timing. What with late home care and missing taxis, time has been chopped out of my days, leaving me little or not time to write. There have been a couple of comments as to how I perhaps should be grateful that home care came at all, even though late and without the required skills and that at least the taxi finally got to Costco notwithstanding a 90 minute delay. My brother went so far as to suggest that there is no grand conspiracy against me with these things.

He's right. There is no grand conspiracy. What there is, however, is a complete failure of understanding on the part of those who don't face the difficulties and constraints that those of us with severe limitations do face. It all has to do with time. In general, I don't have a lot left. In specific, my days are short enough such that any failure of time or timing can have a fairly dramatic effect.

My days ostensibly start at 10:30 AM. This does not mean I am up and about at that time. I am simply awake, a limp body awaiting the ministrations of a trained Health Care Aide. At 10:30 AM, I am ready for clean-up, peri-care and an in/out catheter. This can take anywhere from 15 to 30 minutes, depending on whether or not I soiled myself in the night. After this, I get slung from bed to commode chair, and wheeled in over the toilet to spend my time awaiting a bowel movement, anywhere from 20 to 45 minutes. Remember, I don't have the muscles to push; I am compelled to wait. After that, assuming I don't have a shower or exercises, something which happens on Monday, Wednesday and Friday, I am returned to my bed for condom catheterization and dressing. Usually this takes anywhere from 15 to 30 minutes.

All in all, with the morning needs, an awakening of 10:30 AM means I am in my chair and ready to face the day about 90 minutes later, usually at around noon. Even on shower days I can usually hit this mark, except shower days are also exercise days, making it more like 1:00 PM, after a 10:30 AM wake up. Since my evening home care arrives at 9:30 PM, ostensibly, that means I usually have all of 8 or 9 hours in which to complete my days, minus, of course, the 2 hour nap I need in the midst of most days in order to rebuild the energy lost in the morning's activities.

So take yesterday as an example. I finished shopping at Costco at 6:30 PM. Lots of time for me to get home, unpack, eat a bit of dinner, and be ready for Kabira's 9:30 PM arrival. Except the cab company screwed up. The first cab they sent, within about 15 minutes, was not a wheelchair cab. I take some responsibility for this, as I did not order the cab. The Costco supervisor did, and he may have forgotten to say that I needed a wheelchair cab. The second cab they sent simply did not appear. After about a 40 minute wait, I called the cab compay again and was told the driver reported having picked me up and dropped me off. I reported the untruth of that statement.

By the time an actual wheelchair cab arrived, it was 8:00 PM, an hour and a half wait for a cab. It took about 20 minutes for me to get home. As it happened, Kabira phoned just then and asked if she could come at 9:00 PM. I could have said no, but there was an advantage for me if she came early. She could help me put away groceries. It's not in the care plan, but it meant she could get in and get out early. All in all, my Monday started at 1:00 PM and ended at 9:00 PM. I lost 1.5 hours due to the taxi, meaning I had 6.5 hours of active time. In that time I had a wonderful visit from a friend and got to spend some time shopping.

My days are limited, both in duration and availability. My life is foreshortened, such that any day or any time I lose is magnified. No, there is no grand conspiracty. Just a complete lack of understanding by those who don't live this life as to how precious hours and minutes can be, and how few of them I have to lose, regardless of circumstance.

Saturday, 13 January 2018

Sediment In My Urine

I have a distressingly large amount of sediment in my urine whenever the HCA's drain my bladder. Both my GP and the urologist I saw the other day say that I shouldn't worry about it. I don't have a bladder infection and I am feeling fine. But worry is my super power, so I did some investigation into why it might be there, and I've come up with a preliminary hypothesis as to how it might have affected me in the past, and how it might affect me in the future.

First and foremost, the presence of this sediment is not always an indicator of a bladder infection, although it can be in many cases. There are any number of reasons for having it in my bladder. In fact, according to both my doctors and the highly intelligent world of the Internet, everyone has this sediment in some amount. The difference is that people who can urinate normally pee it into the toilet without really noticing it. In my case, it settles into the recesses of my bladder and stays there until it is removed by the twice daily draining process.

Secondly, this sediment comes from a variety of things. The sediment you see in urine can be made up of sloughing of tissue (debris), crystals, casts, small stones, or cells. Depending on the type of sediment, the cause may vary considerably. My GP and the urologist both described the strings of white in my urine as "protien strings". I don't really know what that means, but I suspect it might be matter sloughed off my bladder wall.

What really matters is whether or not this material causes, or is related to, a UTI. Hence my hypothesis. I suspect I have had this protien in my urine for a very long time, perhaps for decades. It's normal. What is not normal is the urine retention in my bladder, and thus the protien retention in my bladder. This protien is excellent food for bacteria, making my bladder and wonderful home for any nasty little bugs which could find there way in there. I have a built in infection factory.

Since there was a large amound of food for bacteria in there, and a nice, moist environment for reproduction, bladder infections would not only be expected, but common. This has been the case for me in the past. Since my bladder stopped emptying properly, perhaps as much as two or three years ago, this would help explain the rise in UTI's, and the incidence of sepsis to go with them.

Now that we are draining my bladder twice daily, I am anything but upset about the sediment. What you would normally pee out, I must have drained out. Draining it out reduces the opportunities for infection. At least that is my hypothesis. It works for me. I'm sticking to it.

Friday, 12 January 2018

Please Forgive Me

January seems to be the most expensive month of my year. Without the support of friends and family, I am sure I would be financially doomed, what with an extra mortgage payment, home insurance payment, extra post-Christmas groceries, and what seems like a million little things. For example I tore on of my bottom sheets, the high quality ones that are supposed to last for years. Then I realize that I have had them for more than 5 years and they are laundered much more often than regular usage. So they are wearing thin, whether I want to admit it or not. The set will cost about $230 to replace; it will have to wait.

Notwithstanding financial pressures, January is a tough month. I struggle with the dark days of winter, these long nights that seem to make me want to sleep even more than ALS does. The icy weather keeps me trapped indoors most days, increasing the depression I suffer with. The post-Christmas blues set in as I miss my children more than ever.

On top of the depression challenge, the cognitive affect of ALS, or Psuedobulbar Affect, has either gotten worse or my medications are failing me again. I'm having emotional outburst, struggles with inappropriate behaviour and comments, along with the increased depression. I've increased my medications. It's the best I can do.

At lease I am eating well, drinking well, and mostly enjoying my life. Even with my emotional and cognitive problems, friends remain loyal and forgiving, something I am so thankful for. They remember the old Richard, the person who could stand, walk, and be there for them when they needed it. I'm still trying, but I can also be very trying. All I can do is ask for forgiveness, and plead illness.

Wednesday, 10 January 2018

From Grey To Black

I have transitioned. It was not easy. I now know why I wanted to stop writing. It was because I felt compelled to write about nice things, funny things, positive things. It was a lie and I don't want to lie to make anyone else feel happy or good. I did that for a long time. That time is over. So, while you may find humour and life in this blog, I am in the later stage of ALS. My medical chart reads "Advanced ALS". I am still living with ALS. It has become a dark, difficult life.

I am no longer independent, not in the least. I can no longer dress myself. I can no longer pick up things off the floor. I can no longer make a decent meal, clean up after myself. I am incontinent both urinary and bowel. Fortunately I am still fairly regular, yet on a consistent basis I shit myself and piss myself. Catheters fail. I hang just a moment too long in the sling. My body betrays me, as it has been doing for years now.

It is the end of day, coming into night. The sun has set creating darkness out of what was a grey sky, the light of day much like the light of my spirit, slowly moving from grey to blackness.  I am at home now, after heading over to the mall, where I was compelled to ask complete strangers to reach things for me too high on shelves or too tightly attached to fasteneners. My arms hurt from this small excursion

This is the most difficult time of day for me, where I am home alone with nothing to do but contemplate how ALS has destroyed so much of my life. It has destroyed my body, my intellect, my judgement, my spirit. It has crushed what I was, destroyed what I might have been, obliterated what the future could have been for me. This is the hour when these thoughts rise most, when they overtake me, driving me further from the grey to the black.

These feelings, these thoughts, are not abnormal. They may be a function of depression, a persistent side effect of ALS. There may be medications to offset some of them. However they are a constant part of lonely evenings wondering how bad it will have to get before I decide to end it all. As I write, there will be more of this, more honest expression of how shitty it is to live with "Advanced ALS", more of what seems like depression.

Do not try to cheer me up. Do not tell me to increase my anti-depressants. Do not tell me to look on the bright side. Do not tell me there are others worse off than me. Do not take me for a fool; I already know these things. And I really know what it is like to live with ALS. You don't get to say anything unless you know this too.

Tuesday, 9 January 2018

It's My Own Fault This Time

I have to give credit where credit is due. My HCA's have figured out this condom catheter thing, especially the part about getting the retainer band right. I have for days now without an incident. The catheters have held so tight that the evening HCA has had trouble removing them! I also have to post blame where blame is due, pointing that finger right at myself.

Today Kathy put on my catheter as usual. It held, as usual. Right up until the moment when I thought I could improve on things. For the last few hours the tip of my penis has been tingling, kind of painful. I attributed this, and probably rightly so, to the penis band being on too tight. When it gets that way I usually loosen it ever so slightly, but not past the point where the head of my penis can slip through and retreat into my body.

Today when I loosened the band, the pain did not stop. Not thinking that it could be something else, I loosened it again, just the slightest fraction too much. The instant, the very nanosecond in time, when the head of my penis could slip through the band it did so, retreating at full speed back into the warm shelter of my body faster than a clam's neck slips into the depths beneath grasping fingers. As this backwards retraction took place, my bladder decided to punish me even further, releasing the results of the litre and a half of water I have had to drink so far today. The pressure shot the condom catheter off like a balloon off the end of a water hose, spraying me profusely as it went.

So. Now I am wet, and without catheter protection. I am going to try to attach one myself, something I have not successfully done for quite some time. On the plus side I have plenty of towels near at hand, and a washcloth for my hands. Yes, I need it. So much for ALS patients retaining control of their bladder. It's another one of the great lies of this disease.