Tuesday, 17 July 2018

I'm Tired

I'm tired. I was tired when I got up this morning. I was tired as I ate my breakfast. I was tired as I went out to get a replacement for the water jug I broke. I was tired when I stopped in the food court of the mall to rest up for a bit. I'm tired now, ready to nap, to sleep.

I'm tired of being tired. I'm tired of the exhaustion. I'm tired of the effort. I'm tired of the work, the weakness, the weariness of it all. I'm tired of dropping things. I'm tired of being unable to pick them up. I'm tired of things getting heavier and heavier as I get weaker and weaker. I'm tired of so many things being out of my reach, beyond my grasp, too far. I'm tired of shaking hands, trembling arms, losing muscles.

I'm tired of illness. I'm tired of every little thing that turns into a crisis or event. I'm tired of living with the ever-present threat of death. I'm tired of all the drugs, catheters, towels and wipes. I'm tired of having to have someone else wash me, clean me, wipe up after me. I'm tired of being sorry, embarrassed, humiliated. I'm tired of bowel issues, urinary issues, breathing issues, eating issues.

I'm tired of the fight. Each day I become less and less able, less and less willing. Each day the top of the mountain seems higher, further away, shrouded in mist, angular. Each day I become increasingly dependent, unable to do the least thing for myself. Each day I have to wake up and face this monster. Each day I have to will myself to live and go forward.

I'm tired of having ALS.

Monday, 16 July 2018

Effort And Planning

It's been tough the last couple of days. My arms have been especially weak, at times simply falling at my side, unable to raise even their own weight. When this happens my elbows lock, leaving me only my shoulder muscles to work with, weak as they are. What I end up doing is trying to fling my locked arm around, up far enough to hit the armrest on my wheelchair. This unlocks my elbow, allowing me to rest my arms until they are ready to go again.

There's a lot of this kind of stuff lately, where I have to use both hands to pick up a cup, where I have to rest my arms after a few bites of a meal, where I put myself on a slope to eat so I don't have to life straight up. Right now I want a cup of water. I'm stalling, not wanting to get it because of the work involved.

Those of you who ask where my caregiver is need to realize that she doesn't work 24 hours a day. She is out for a walk right now, rightly enjoying the pleasant, warm weather here in Calgary. She is here plenty. Last night I had a midnight catheter accident. She got out of bed at 5:00 AM, came into my room, fixed me up, then went back to bed. That's a bit of an interruption. So I want to be sure to interrupt as little as possible, to do as much as I can on my own.

In reality I could have asked her to fill my water cup as she went out. She walked right in front of me, stood there for a moment, then left. It would have been very easy to ask. The truth is that I didn't think about it. I was focused on the moment, not on the absence of water. I will get my own. It will just take some effort and planning.

That's what I need to make sure I have a bit of arm strength when I need it; effort and planning.

Sunday, 15 July 2018

What's Coming Up Next

I am having increasing problems lifting my arms. This means things like eating, drinking, picking stuff up; all kinds of things where I use my arms are now almost beyond me. A few months ago it was a periodic thing. Now the normal is where my arms have great difficulty; the exceptions are where things work at least halfway decently.

Another new norm; this last few months have seen a near total collapse in my arms and shoulders. They have been leaving me for a while. The only thing which has changed has been the pace of change. This disease forever leaves me struggling with the new normal. I read on Facebook today that ALS really stands for Always Losing Something. This is more than just a bit true. It is the foundation of the disease.

I wonder how long it will be before I am completely without arm strength? This is the place I said I would not go. Yet here I am, marching firmly towards having no useful arms at all. I am glad I have the MAID stuff in place although I wonder if I will really use it when the time comes. I suspect I will, even though I am in no hurry. I'm getting by. I'm mostly happy. My mood is generally good. I'm not sure it's time to leave yet.

Still, yesterday was kind of depressing. I went out for sushi with David. He had to help me eat a couple of times. I managed the rest, although I had to use a fork instead of chop sticks. What I have learned in the last few weeks is that if my arms give out, all I need to do is rest for a bit then try again. Usually them come back. The sad part is that I know for sure there will be a time when they won't come back, a time when they are done completely. That's what's coming up next.

Saturday, 14 July 2018

What Next?

This is just plain stupid. I now have a blockage in my urethra! Arrrrgh. It feels like a kidney stone, sharp and cutting as it sits in there stopping the flow of urine. When it gets really exciting is when we put in the in/out catheter. That's when it really hurts, as Shelby pushes past it, clearing the way to drain my bladder.

The only way to really deal with this is for me to drink plenty of fluids, perhaps as much as two or three liters a day, hoping that all of this will flush out the stone, or worse, stones. That also assumes that I will be able to pee it out. Since yesterday I've produce very little urine in my catheter bag, while draining my bladder has produced near record amounts of urine. Yet I don't think the stone, assuming that's what it is, will pass through the in/out catheter. It feels like it might, but it hasn't yet. This also assumes there is only one of these buggers in there.

This is the whole deal with ALS. Everything is a bit more complicated. Everything takes more out of me. Everything cause me more difficulty, more pain, more exertion, more exhaustion. Kidney stones are a tough thing for normal people. For me they seem to be more painful, thanks to pushing a catheter in there twice a day. For me they seem to be taking longer to pass, most likely because my bladder muscles are weak, making the urine stream to weak to push against them.

When will it be over? When is enough enough? Why do I keep fighting this war in the face of certain failure, steady pain, complete exhaustion? What next?

Friday, 13 July 2018

The Swelling Has Gone Down

The swelling on my lip is pretty much gone, as is the swelling in my throat. I seem to be past the point of crisis, where I risk throat closure or something like that. So now all I have to do is see what my medication routine will look like as I go forward. I suspect the Ramapril, a high blood pressure medication given automatically to people who've had heart attacks, will no longer be on the list.

Once I am done with the Prednisone, Zantac, and Benadryl, I will actually be taking fewer medications that before all this, something which makes me feel good. I have long suspected that many of the pills I take are "automatic", something doctors just assign when seeing a given set of symptoms. The only real problematic medication left is the Cipro, the antibiotic I will be taking one week on and one week off in an attempt to keep my bladder infections at bay.

These days I am a very expensive member of the health care system. My body is failing me in so many different ways. I'm having contnual problems with my bladder. I have allergic reactions to medications which I have not had in the past. I'm having trouble with all of the ALS damaged parts of me. In general, my body is just a wreck.

It's a good thing my mind is intact. At least I can enjoy life around me, fitting in what I can, when I can. At a minimum, there is still good food, good wine, good company. In that regard I am fortunate. It's what I focus on when the bad stuff comes along, as it will continue to do. It'[s all I have left. It will do for now.

Thursday, 12 July 2018

Fear Will Not Decide For Me

I, like so many others in this country, live on the edge. Not the ragged edge, not even the thin edge. Perhaps on the slightly thin edge, away from absolute danger yet near enough to wonder from day to day just what tomorrow will bring. Of course most of this "edge" is financial although a good amount of my edge has to do with my health.

My throat is still somewhat swollen from angioedema. My upper lip is still slightly oversized. It's not getting worse, which is a somewhat good sign. On the other hand if it is getting better, the rate of improvement is not substantial. I live with the constant concern now that my throat will suddenly close up due to some random reaction to the chemical stew of drugs I am taking right now.

My finances are like that too. I never know in the middle of the month if I can make it to the end. Good things happen yet I find myself in this place often, hoping for a monetary miracle to occur. They do. Often. I seem to make it through.

I refuse to let these fears dominate my life. I want to live as much as I can before I die, be that a financial or physical death. That's why I bought a wine kit today. It's my way of sticking up my middle finger at the threats. I will not stand still because something bad might happen. I will keep living day to day, as best I can, for as long as I can. Should the swelling of angioedema end my life tonight, someone will drink this wine. That I know.

Living in fear is no way to live. It is a burdensome jacket, sweltering in the summer heat yet failing to bring warmth against the winter cold. Fear simply weighs you down. It is not that I am not afraid. I most certainly am. I just refuse to let fear be the thing which makes my decisions for me. I trust in the good things. It always seems to work out somehow.

Wednesday, 11 July 2018

A Rough Couple Of Days

It's been a tough couple of days, what with hospital visits, wheelchair crashes, life-impacting decisions, and lots of crying. I don't really know where to begin, so I will begin at the beginning, yesterday morning.

I awoke yesterday with a fat lip and a swollen throat. That might seem unimportant normally however in light of the allergic reactions I have had lately, it was just the thing I had been warned about by EMT's and doctors. I was told if this happened, I should go immediately to ER. For me that means a call to EMS right away.

They EMS team arrived, quickly assessing me, quickly agreeing that  I needed to go to ER. They soon discovered their new, gas lift, larger stretcher did not fit into my building's elevator. After much discussion, it was decided Shelby would put me in the van and drive me to ER instead of me taking an ambulance trip.

Off we went, the two of us in the van, to the ER at Foothills Hospital. I had taken a couple of benadryl to calm what we all though was a continuing allergic reaction to the MacroBid I had taken a few weeks back. After checking in at the ER we went through the typical wait time for triage. Triage must not have thought much about my situation as our wait time was close to five hours. After waiting with me for four hours, Shelby and decided she should go home. After she left, I slept for another hour, at which time I was ushered into a private ER room, one with a sling and lift.

I spent a couple of hours there, waiting for the results of various tests. Then, with no warning, two HCA's showed up to put me into a sling and onto the hospital bed. I had stayed in my chair until then. I asked why, to which the professed no knowledge whatsoever. I said "no". So they called the nurse. She explained that the doctor wanted me in the hospital for an undetermined period of time. I said "no",

Finally the doctor showed up. He dropped the bombshell. I have angioedema, an inexplicable swelling under the skin which generally shows up around the lips and in the throat. That's the really dangerous part, swelling in the throat. It can happen in just a few minutes, choking off my airway completely, causing death through respiratory arrest. I would, or rather could, die at home before anyone could get me to the hospital.

He also told me the only response to this life threatening situation was intubation, putting a tube down my throat until the danger of swelling passed. If things went really badly, I could die. So I had a choice. Stay in hospital and get intubated, or go home and risk dying if things got bad in a hurry. I chose to go home. If I am going to die, I would prefer to do so in my own bed.

The immediate decision made, I chose to roll home rather than call Shelby for a ride. I needed time to think about my decision. I don't really want to die, especially from something with such a simple treatment. On the other hand, I really don't want to die in hospital. There is a treatment through Benadryl, Prednisone, and Zantac which could work well. The end target is four days. If the at home treatment does not significantly reduce my symptoms within four days, I will go back into hospital for intensive treatment. If my throat swelling gets worse, I will go back into hospital for intense treatment. Otherwise, I will stay at home and hope the drugs work.

Then, one the roll home, I fell over backwards in my power wheelchair while attempting to make a curb. My head was protected by my headrest. The rest of my body was protected by the wheelchair. Fortunately there were several people around who got me back upright. Unfortunately it looks like I bent the frame on my PWC. I've called my ALS Case Worker at the ALS Society. He will come over today to inspect it. I asked him to bring a replacement; my chair will have to go into the shop to get bent back into shape.

As I said, it's been a rough couple of days.