Renewal For A Year

This morning I was sitting on my bed putting on my jeans. It's something I do almost every day; the odd day I go without pants. In order to put my left leg into my jeans, I lifted my foot by grabbing my compression sock at the top and pulling. Once I got my leg up onto the bed, my centre of gravity had shifted and I tipped over backwards. No harm, no foul. I was on the bed. I just sat back up and started over.

It's not a big thing, just another reminder of the loss of core muscles I have experienced, never mind that I have lost all muscle tone from basically my waist down. It's these little things, though, which can make you really tired of this horrible disease, the small changes, the incessant changes. I have to be careful not to let them dominate my life.

In that spirit, I did something yesterday which I think is, if not brave, at least defiant in the face of the terrible odds I have to deal with this year. I am in my fifth year post diagnosis, a marker by which 80% of people diagnosed at the same time as me will have died. I am growing steadily weaker. My world is decreasing in size and scope almost daily. So I did something to declare that I will not go quietly into that good night.

I renewed the insurance on my truck for a year. I also renewed my home insurance for a year. A full year.

This might not seem like much to normal people. We do it all the time. I, on the other hand, have to contemplate whether or not I will still be able to drive in as little as 6 months, let alone a year. I have to wonder if I will even be alive in a year. It's no big deal for most people; they are not compelled by illness to think that way. The money is a big deal, $1048 for my truck insurance and $308 for my home insurance. If I find I cannot drive or if I die, my insurance can be cancelled and whatever money remains will be refunded.

The statement is not about the money. The statement is all about renewing for a full year. It says something about my approach, my view on things. Yes, I am likely to die soon. No, I will not stop saying "Fuck You" to this illness. It's hard to keep living with ALS. That's the very reason I renewed for a year. I might not make it, but it gives me a goal, a target. It says that somewhere in my deep being, I still believe that I will be here in a year, still living, still going.

Passports And Adventures

Yesterday was a busy day. I finally managed to get out notwithstanding snow, ice, bad roads, and illness. Katherine and I went to the passport office to submit my application for my renewal. Then we went to Willow Park Wines and Spirits, a store which I have wanted to visit for some time. It wasn't as good as my own favourite liquor store here in Calgary, Crowfoot Liquors. After that we went to see the new Star Wars movie, Rogue One, and finally ended up in Chapters where I picked up a couple of books to read.

It was the passport which was the most significant thing from yesterday. They punched holes in my old passport and returned it to me. This morning I picked it up and perused it, looking at the stamps from various places I have had the good fortune to visit. I walked through the pages, while in my mind I walked through some of the wonderful adventures I have had in my life, both before and after ALS. Before ALS, it was mostly work. After ALS, it was all adventure, that one last great travel.

That's one of the things which struck me. There are a great many stamps from London, Frankfurt, the UAE, all before November 22, 2012. Then, after that inauspicious date, there are but a few. Yet those few, the ones from traveling to Europe, traveling to Cuba, and even one from the US, all mean a great deal to me. These were very special voyages, take after my diagnosis, taken as my "last trips". I look on those with such fondness, even more fondness than my many adventures before ALS. After my diagnosis, each voyage, each adventure, has taken on special meaning, to be savoured all the more because of the poignancy of circumstance.

I will travel yet again. I will have more adventures. My friend David is taking me on a three week road trip starting in early February. Katherine and I are trying to arrange another adventure, this time a cruise. Yet still, it is the trips in the past I dwell on, the nostalgia of things done when I knew I might not do them again. There are stamps in my passport which will not be repeated. There are new stamps to collect, and I am going to do my damnedness to collect them. Not all adventure lies in the past.

Nursing Experience

Talk about a complete waste of a day. That was my day yesterday. I spent it all dealing with the Alberta Health Care Services nurse, the Foothills Medical Centre Emergency Ward, and various ambulance drivers and EMT's. As for myself, the only good part of the day came at the end, when Katherine made my favourite Won Ton Noodle Soup for me.

The day started normally, with my Home Care Aide coming to help me with my shower and exercises. We covered up the bandages on my left foot, and I came out of the shower nice and clean. After dressing, we went to my exercises, where I discovered that I had hurt more than just my left foot in the fall from my commode chair. Nonetheless, we complete our work just in time for the AHS Home Care Nurse to arrive.

The nurse was young, probably in her mid-20's or so. Clearly she was well education in her profession, but I suspect she needs a bit more real life experience. The first thing she did was unwrap my wound to inspect it. Then she washed it out, cleaning out the old blood, pushing gauze deep into the cut to clear it, producing more blood in the process. At this point she said to me "This cut is very deep. You need to go the the hospital and have it stitched."

I know my own body. I know a thing or two about damaging my body, how it recovers, what I need. I also know that putting stitches in a cut which is more than 4 hours old is a truly problematic issue, especially when the cut is narrow and deep. The only reason it was bleeding is because she was poking at it. I knew I didn't need, nor would I get, stitches from the hospital.

She was insistent. Being the easy going, compliant fellow that I am, after a few moments of discussion I said "You're the expert. What should I do?" She said "Call EMS. Have them take you to ER and get stitches." So I complied. I did just that, called 911, arranged transport, went to the ER.

I sat there for almost five hours. I was admitted quickly, and moved into the ER quickly. The wait was simply due to the absolute lack of urgency in my situation. They did take x-rays to rule out any broken bones; there were none. The nurse cleaned the wound so the doctor could get a good look at it. The doctor, after four and half hours, came in, looked at the wound, and said "Stitches won't help you much. They would improve healing time, and would make the scar look better, but who looks at the bottom of your feet? The real problem is that if we put in stitches, we are likely to enclose any bacteria that are in there, substantially increasing the possibility of infection. So we can go either way on this. The risk of infection is about the same if we stitch or not. What do you think?"

I replied in two short words. "No stitches." The conversation ended other than a few pleasantries. The nurse rebandaged my wound. I had had the common sense to bring my own wheelchair this trip, so the nurse arranged a wheelchair cab. I got home  at 7:00 PM. What had been a 30 minute effort to change a dressing had become a full day of wait to do nothing.

It's frustrating. Doctors and nurses with experience learn to listen to their patient, seeking to find what the patient knows about his or her condition, responding with minimal impact whenever possible. This is a lesson that young nurse needs to learn, to do the least amount possible for the most amount of gain. And don't send people for stitches if the wound is more than a day old. Just watch for infection, and keep it clean.

Waiting Out The Pain

You know how they say that you feel the muscle pain from a fall more on the second or third day, rather than right away.  I can attest to the veracity of that statement. Today I hurt even more than I did yesterday; on Monday I felt almost no muscle pain at all. What makes it worse today is this is the first attempt at my Range of Motion exercises since the fall. Trust me, the range hurts.

I do my own arm exercises still. It was easy to notice that my left arm hurt more than it usually does. My left arm, my left side in general, is failing faster than my right. The muscles in my left arm definitely got a pull as I fell forward of the commode chair. They most likely, along with my right arm, were out in front of my trying to slow the fall, or frantically grabbing at thin air looking for a safety bar. Alas, none were to be found.

My left knee seems to have taken a real beating too. The pain as we bent that knee today was enough to make me cry out loud. There would be more of this; my knee was just the first part. There are a couple of exercises which really stretch the knee. When we did the first one my cry of pain actually frightened the HCA enough that she stopped right there. We adjusted, eased the exercise, and moved on.

While there was consistent pain in my knee on the left, the real surprise was my right foot. When we went to do the foot stretches, usually one of my favourite exercises, the pain in my right foot was enough that I called them off. We did a minimal stretch on my right foot. Oddly enough, my left foot, the one with the cuts, had almost no muscle pain. It's as if the fall did enough in cutting my foot.

Then there are the back muscles. My back muscles on my right hand side are the ones which took a real beating in the fall. If you can imaging a slow crumple forward from a chair, with a slow tilt towards the left hand side, the side where my foot was stuck on the foot pad, you can imagine how the back muscles would stretch and pull as I fell. They don't hurt a lot, just enough to remind me that they were involved too.

All in all, it's kind of odd to think that my worst pain is in my right foot. It almost makes me wonder if I didn't break something in it again. I'm in no hurry to find out. I know what the doctors will do; nothing. There is almost nothing you can do with the small bones in the foot, and since my feet don't move, I really don't need a cast. I'm just going to have to live with the pain and wait it out. I'm good at that. I do a lot of that these days.

The Morning After

It's not Monday but I am posting a video blog today. I'm struggling with the aftermath of the fall from my commode chair yesterday. My back hurts and I feel especially weak right now. This is also still from my cold. Overall, today looks like a tough day. So video works for me today.

I Am A Bleeder

I'm a bleeder. I didn't used to be his way. Before atherosclerosis, before ALS, before heart attacks, before DVT, before the last 10 years, I had very clotty blood. Often if I cut myself, simply rinsing the cut and patting it down was sufficient. These days when I cut myself even the smallest cut bleeds like a sliced main artery. I cut myself this morning.

This was not a simple slice of the knife. No, this was a performance. I awoke at 8:20 AM with a growling pain in my lower stomach, one of those gas bubbles which is really telling you to use the toilet, now. Knowing the potential cost of waiting, I got up early, dozy, unstable. I transferred to my commode chair and made my way to the bathroom. I positioned myself over the toilet and took off my underwear.

I dropped them, right in front of me. So I leaned over a bit, grabbing at the handrail of the commode chair, in an effort to pick them up. This is the moment I noticed that the handrail was in the raised position, leaving me to grab at nothing but thin air. My forward lean continued unabated until I tumbled out of the commode chair and onto the bathroom tile. At first I thought I was fine. Then I got a look at my left foot. I was bleeding, lots of bleeding. Enough bleeding that my HCA, when she got here, said it looked like a murder scene. I have pictures to prove it.

There was little I could do at this point. I was on the floor, bleeding, in the bathroom. So I gathered up my strength, still weakened from my cold, and slid myself slowly into the bedroom. I managed to sit myself up against my bedframe where I could put myself into my sling. This was not all one smooth maneuver; I rested first at the bathroom door, then at the bedroom door, then against my bed. Once I had enough strength, I put on my sling and lifted myself onto my bed.

The blood trail was impressive, once again leading to comments of a scene out of Psycho or some other slasher movie. I waited for my Home Care Aide to arrive. When she did, her first suggestion was that we call EMS to bandage it. We called. They came. Bandages were applied. Then my HCA got to work with the mop, cleaning up this scene from a B movie.

Alas this is not quite the end of the story. A few hours later I needed once again to go to the toilet. I had not been successful earlier in the day. So I swung my feet off the bed to transfer into my commode chair. The bleeding started again, not so bad as before, just a drop here and there. So off I went to do my duty. Katherine was here by now, and she started the clean up.

After transferring onto the bed, she wanted to clean the blood off of my foot. No problem, except she removed all the bandaging which the folks from EMS had carefully applied. I have no replacements for this bandage, so Katherine thought a paper towel would do. After some vibrant discussion about how this was a very bad idea, I called my friend Anne to come and play first aid nurse. She is on her way now, with gauze pads, gauze tape, and hospital tape.

Anne will tape me up, but I am likely to be stuck here in bed at least until tomorrow. I need to keep this foot elevated. After all, I am a bleeder these days.

Not So Happy New Year

Happy New Year. Humph. Not really. I see very little to be happy about simply because the calendar has turned over another number.

I lay in bed most of today, trying to give my body a chance to recover from this stupid cold. I lay there, not quite depressed but certainly unmotivated, uninterested in getting up or doing anything. Even my body's persistent call to the bathroom went unheeded; the jug worked just fine, other things could wait. I slept, I read New Year's messages on my phone. Eventually I got up.

This time of year is always bad for me. It has more to do with the winter, with the darkness, than anything else. I can remember years ago lamenting the fact that I got up in darkness to go to work, spent the whole day indoors working under artificial light, then drove home in the darkness. This is the time of Seasonal Affective Disorder.

Now add to that the impact of ALS. This will not be a happy year for me. This will be a very difficult year, if not my last year, as I deal with the continuing losses in my arms, shoulders, hands, and general upper body. Losing my legs was difficult. Losing my upper body will be awful. That is what this year will bring.

This year will likely be the last year I drive my truck, dress myself unassisted, do my own shopping, prepare my own meals. This year will likely see my last major road trips, my last great adventures. I will, by the end of this year, lost most of my ability to do something as simple as lift a glass of wine or pour a cup of coffee.

I know there are those who will say I should be happy to be alive. I'm not so sure I agree. Living longer does not mean living better. There are those who say there are plenty of things to be happy about in my life, and they are right. That, however, has nothing to do with a new year.

I see nothing in the turning of the day, in the celebration of another 365 days of successful, stable orbit around the sun yet to come. I see a rough, hard, difficult year ahead of me. So tell me again why I should be happy about that?