Sunday, 20 May 2018

A Terrific Long Weekend? It's Possible.

It's a wonderful feeling to have two good days in a row; two days without a catheter accident... so far, two days without a bowel issue, two days where I have had great food and company, two days where I  have gotten out into the sun, two days where weakness has not damaged my day. The funny thing is that a catheter accident doesn't even feel like a big deal anymore, but those other things... they mattter. A great deal.

The sun is shining; I even got a bit of a sunburn. That's my imitation of a tan. Actually I am lucky that way. This mild burn, certainly not carcinogenic in any hurry, will turn into a bit of a tan and, with any luck, stay with my through the summer. It used to work that way on the boat, where the first burn of the season turned into a dark, protective layer. It doesn't mean I didn't use sunscreen; I surely did. It just means that I don't have to worry quite as much as others in my family.

Yesterday my friend Brad came over. He loves to cook as much as I do, so I let him loose in my kitchen where I had some pre-selected ingredients for a meat loaf; ground beef, Italian style sausage meat, mushrooms, various spices, and of course, onions, garlic and peppers. Brad worked his magic like few others can, giving me this fabulous meat loaf dinner, with mushroom gravy. Along with it we had my own  homemade Greek Salad, and some Potato Salad from Costco that we both really like.

This afternoon, Anne will be here to help me with wine chores. All three of the wine kits I have on the go need some work today. I have one which will need bottling next weekend, so I will need to ask for help with that. Anne does so much with wine. All I can do is repay her with a nice dinner. We will have leftover meatloaf.

You see, good days. Two in a row. Tomorrow could quite possibly be three. I want to do some stuff with my planters. I have asked a friend to come help. If that works out, it will have been a terrific long weekend.

Saturday, 19 May 2018

Failing To Feed Myself

I managed to eat my breakfast today. It did not go so well with my dinner last night, where my arms failed me completely, leaving me unable to pick up a spoon, unable to lift the mac and cheese from the bowl to my mouth, unable to feed myself. In the final analysis, my HCA had to feed me my dinner. This situation becomes increasingly frustrating when you consider that I was the one who had prepared that dinner. So I can cook, but not eat; or eat, but not cook.

In fact yesterday almost seems like two separate days. I got up when my HCA, Yvonne, arrived. She is perpetually late, so my rising time was 11:05, rather than the normal 10:30 AM. I don't like the lateness most days, as it takes from me what is a very limited amount of time in my days. Nonetheless, perhaps I should be grateful she arrived at all. I've had that happen too.

So she arrived, got me up, showered me, dressed me, and did my exercises, after which I was thoroughly exhasuted. I dozed in my wheelchair until late in the afternoon, when my afternoon HCA arrived, fixed a disconnected catheter tube and changed my wet clothing. Shortly aftwards, Dion came for a visit, an excellent visit which roused me enough in spirit to convince me I once again had energy. It was a trick.

After Dion left I want shopping, all the way over to Brentwood. I wanted to pick up some beer at the liquor store as I have none on hand to offer guests, especially those who don't like wine. I know, there are some people like that. So off I went, rolling over to Brentwood, shopping at the liquor store and for a couple of things at Co-op. Nothing big, Nothing urgent. Unfortunately I took a lot longer browsing than thought. By the time I got home to start dinner, it was already 9:00 PM. My HCA, Kabira, called shortly after that, saying she would arrive on time, at 9:30 PM, to put me to bed.

I had not eaten that day, not a bite. When my HCA was to make breakfast, I did not have the energy for it, nor even for a cup of coffee. Then again, she had but 10 minutes remaining in the schedule, so any sort of cooked breakfast was out of the question. I had no cereal, one of the things I eventually purchased later in the day. Yet here I was with just a few moments to make and eat dinner. So I grabbed a box of KD, mac and cheese at its finest. Even though this is advertised as dinner in less than 10 minutes, it took me almost 30 minutes thanks to ALS. I pushed hard to get it done, while at the same time loading groceries into the fridge and cleaning up the kitchen counter.

Kabira arrived at the same time as my KD was ready. She said not to worry, that I should eat. She headed into the bedroom to get my bed ready, to prepare the catheter supplies, to do what she does before slinging me into place. I tried to eat.

Tried. That's the word. I tried to lift up the spoon. I could not. My right arm failed completely. My left arm had failed about a half hour earlier. Neither arm was strong enough to lift the spoonful of macaroni and cheese. I could't even get it past the edge of the bowl. I felt ashamed, terrified, shocked, afraid. This is the next big thing to go. Soon, feeding myself will be a thing of the past. Someone else will have to feed me. The ironic part is that I had the strength and ability to cook the dinner, but not to eat it.

Even today I found myself needing both hands to lift my fork at breakfast. So what next? When I have dinner with friends, will one of them have to feed me? Will I be completely unable to feed myself in a few weeks or months? What I am going to do, other than cry? This might be the turning point, or the end point. It is something I have to live with, and think about every time I try to eat something. Yes, try. That is the word. Yoda was wrong.

Thursday, 17 May 2018

Bad Arm Day Revisited

As is usual with ALS, things are changing. I am going to have to redefine what a "bad arm day" is. Six months ago, a bad arm day meant pain in my arms, the inability to pick up a wine kit, difficulty reaching the second shelf in my cupboards. Today I am having a bad arm day, only now it means difficulty feeding myself, the inability to lift my arms away from my sides, and, as always, pain.

Brunch today was pancakes, the thin crepe style that I like with whipped cream and fresh fruit. Fresh fruit was absent today; I didn't pick any up at Safeway the other day. Instead, today I had whipped cream with plum jam and apricot and red pepper jelly. It was a tasty combination, at least that portion which I could lift to my mouth.

My arms were able to lift the fork only about halfway up my chest. I completed the task by leaning over towards the fork, then using my left hand to push the fork, which was held in my stronger right arm. This work for a bit, but then both arms became too tired to do anything at all.

So I switched approaches. First, I slid the plate onto a tray I had place on my lap. Then I leaned back in my wheelchair so the angle of approach from plate to mouth was substantially lessened. That way I could more slide my arm sideways rather than lift it up. I managed to complete the task of feeding myself in this manner.

This is what a bad arm day looks like now; potential inability to feed myself without using alternate methods. When I said I would let things end naturally once I could no longer eat, this was not what I had in mind. I can still eat, happily and handily. I just can't get the food to my mouth consistently.

I just have to hope things get better as the day goes on. After all, I want my wine this evening.

Wednesday, 16 May 2018

Fear Of The Future

I was reading an article in The Washington Post online about O.J. Brigance, the once famous NFL player now struggling with ALS. Actually he's been struggling with it for 11 years, an unexpected life span with such a voracious illness. The article made much of his 11 year survival. Yet if you look at his picture you will see that he has both a feeding tube as well as a breathing apparatus. With this kind of technology, along with his tremendous support network, that longevity is not necessarily surprising. Consider Stephen Hawking.

This is one of the difficult questions I face. I love life. I love being alive. Beyond ALS, I am surprisingly happy in my life, busy, active. I have people in and out almost daily. My HCA's are, for the most part, tremendously positive and supporting of me. Life is good.

Then there comes the living challenge of ALS. I am losing my arm strength. Soon I will not be able to feed myself; I will need someone to feed me. After that I will lose my ability to chew my own food; I will need a feeding tube to stay alive. Finally my diaphragm will fail; I will need an external breathing device along with having to have a tracheostomy.

I have always said that I do not want a life on machinery. Yet that is where I am already, the machine in question being my Power Wheelchair, or the slings and lifts I use daily. Perhaps I should say I don't want a life with invasive support procedures, like a feeding tube. I have always been a carnal person, loving the physical pleasures in my life, the taste of a great meal, the aroma of a fine wine, the warmth of a hand held in mine. These are the things I am now losing, or faced with losing.

So as the fateful day approaches, that day when I can no longer eat or drink, unable to enjoy the taste, the smell, the sensation, is that enough to make me want to leave this life? I have always been confident that my answer would be yes. I want to die "natually" rather than live "articially". These days my certainty is waning. I no longer know what the answer will be when that day comes. For now, all I can do is enjoy what is still in my life, without worrying about the future. That's as good as it gets.

Tuesday, 15 May 2018

DQ Boost

I am weak today, especially in my arms. This is, of course, the price I pay for being so active yesterday. It wasn't just the run to Staples and Costco, nor the evening run to Safeway for milk and eggs. Nor would I lay it at the foot of the sleeping pill I took last night. It is all of these things combined, plus the normal affects of ALS which do me in today.

This does not mean I will do nothing today. What it does mean is that I will be tired all day, ready for an early bedtime tonight. It means I will have to push myself so I don't just sit in my chair and nap all day. It also means any tasks I manage to perform will be limited in nature and slower in delivery. It's just what happens.

ALS is a disease of attrition, both in the global sense and in the personal sense. This disease persistently wears down its victims, grinding them until all that is left is their mind, something ALS touches in most cases, yet touches in limited and unknown ways. Then here is the personal attrition, where the disease destroys your individual muscles, causing loss and pain in small steps each and every day, once again wearing you away until you have nothing but your thoughts.

Today I'm tired; in my arms, in my legs, in my core, in my neck. Today I am tired; sleepy, barely able to keep my eyes open, hoping for a nap right now, and another after I get back from meeting a friend at the mall. I plan, however, on using a Peanut Buster Parfait from Dairy Queen to give me a boost, to keep me going, at least for an hour or two.

Monday, 14 May 2018

Hanging On

Six months ago I made the decision to end my life. The target date was to be March 15, or some date around there. You see, you can't actually pick a date, per se. You have to arrange an appointment, preferably a couple of weeks away from your target date. Nonetheless, I had an approximate target date. I got the MAID papers ready, asking two of my close friends, Elizabeth and David, to sign them. They were in the room with me when I was diagnosed; I thought it poetic that they should sign the papers which would lead to my exit.

November and December were harsh months. It wasn't just the winter which closed in on me. It was the loss of freedom, that I could no longer get in my truck to go somewhere. It was the increasing pain in my left shoulder, in my arms, in my neck. It was the realization that both the pain and the weakness were getting worse, at a substantial pace. I could see it coming, complete loss of my arms. It was a place I didn't want to go.

Then March came. I did not book the final appointment. I canceled my departure, chickening out of it all, fearful of facing death. While I was, and still am, declining daily, I just could not bring myself to book the date for my last breath. I just couldn't do it.

Now, a couple of months later, my arms have gotten much worse. I am beginning to struggle with feeding myself. I cannot pick up a towel from the floor, nor my water jug on the table. Getting something out of the fridge, regardless of weight, is tremendously difficut. Making meals is getting to be a truly non-trivial task.

Yet I feel completely different today than I did last November. Yes, winter has passed; it does make a difference. However I know have the van, with David making sure I get out at least once a week, sometimes more. Others are helping too. We are also working hard at getting me a live-in, someone who can help with both the simple and complex tasks I can no longer do. My financial situation, while still precarious, is good for a while, something which challenges a great many other PALS.

The only things missing are the things which have long been missing. I am still alone, lacking a partner or lover, someone to be with both emotionally and physcially, an important thing for me. I'm still getting worse; that never changes with ALS. Yet I have so much, so much in my life. In the darker days, it's an easy thing to forget.

I will have to leave, sooner or later. When my arms fail completely, that will be a big pressure point. But until that day comes, I am going to hang on for all I am worth, fighting daily to live my life, to live with ALS. I'm not yet ready to let go.

Sunday, 13 May 2018

Bad Arm Day

I'm paying today for working hard yesterday. My arms are very weak, especially my right arm, the one I use the most. Thankfully, typing allows me to rest my wrists on the table, using only my hands, shaky as they may be. It happens a lot these days, that I tire out my arms and they stop working.

It happened yesterday after I did some grocery shopping. I was holding onto the groceries, including a five pound bag of potatoes, with my left hand, while the bags rested on my lap. I had forgotten the basket David gave to me for just this purpose. By the time I got home, my left arm was so tired that it simply dropped to my side when released from its task, and I could not lift it at all. It just hung there, dead as my legs. Fortunately after a rest of a few minutes, it came back to life; I was able to use it again, but only for light work.

My arms are failing faster than I had hoped, more than I had hoped. At this rate I will be armless in a few months, maybe sooner. I sure hope not; I want to be around for Christmas. This whole arm thing is one of those lines in the sand. Without arms I cannot feed myself. I don't want a feeding tube, so I either have to crumble on that line, or I stop eating, allowing the inevitable to take place, perhaps even helping it along.

We'll have to wait and see.