Friday, 23 June 2017

Finding Fulfilment

It would be fair to say that I am exhausted. It would also say that it takes very little to make me that way. In what was a wonderful drive down from Fort Augustus to Furt William, then further down to Oban for a stop at the distillery, and finally the long push from Oban to Glasgow by way of Loch Lomond, I did not get out of the car even once. Yet all that time in the car, sitting, watching the scenery drift by, has left me more than just a bit tired.

Part of the reason is that I am still recovering from that damned bladder infection. Part of the reason is that the effort in simply sitting is tiring. Part of the reason is that, while I am on the road, I want to see as much as I can, craning my neck at every corner, looking up every hillside in the highlands, along every shore of the lochs, at every building in the many small towns we passed through

There were people who were worried that this excursion would tire me out. I knew it would. I knew it would take a lot from me, never giving an inch in return. I also knew that if I didn't do this now, I would never do it. I may have other opportunities, but I don't see them all that well in my future. With the amount of work David has had to do, this is our last "road trip" without additional help. He can't do it. I can't do it.

Yet here I am still trying, still working at living my much as much as I can. Today that included buying the single most expensive bottle of Scotch I have ever purchased. It included a stunningly beautiful drive down the Argyll coast. It included a stop beside Loch Lomond where David took my picture with our stuffed Nessie, as well as the lock, in the background.

I don't know how much longer I can live like this, or live at all. But it is better to be alive, out here, than at home fearful of what might happen to me. In the end, I know what will happen. It's just a matter of time. Better that I find fulfilment in that time.

Thursday, 22 June 2017

Diapers

It's been another tough day on the road. I didn't sleep at all last night, so I slept as we journeyed today. We started at Culloden, the last Jacobite battlefield on Scottish soil, fought in 1746. This Jacobite rebellion against the English Hanoverian king George II. David was kind enough to wheel me though the interpretation centre, until I started falling asleep in my wheelchair. We took a quick look outside, then headed back to the car.

I fell asleep almost immediately, or as asleep as I could get sitting upright in the car's bucket seats. David drove us down Loch Ness, past the Nessie museum where he stopped, then onwards down the loch to Fort Augustus. We are staying the night in a lovely old Scottish lodge. Right now David is sitting in the great room, by the fire, checking out locations for tomorrow. We are fairly sure we will stay in Glasgow for the next couple of nights, but you never know what David will come up with.

Speaking of coming up with things, we appear to have a solution to my periodic incontinence due to the bladder infection. Diapers. Not Depends, but full blown industrial strength adult diapers like they use in a hospital. These things hold a lot of moisture, are very secure, and I can pull down the front to pee in a jug as needed. They are not perfect, but they are much better than the pinching catheters or trying get to the jug while seated in the bucket seat of the car.

I am largely unable to dress or undress myself, but David does not see, squeamish in the least when it comes to helping. For this I am truly grateful/

Wednesday, 21 June 2017

Troubles Come In Threes

They say trouble comes in threes. Just who is "they" anyways? Regardless, trouble has come in threes for us today. I have managed to develop a bladder infection. It's a nasty one, with blood in my urine and the usual incontinence. It's another day of more towels, cleaning up, wearing a catheter, staying in bed. This happens whenever I fly. The airline seats tend to pinch my bladder and any catheter I might be wearing, causing urine to be retained. The retained urine causes the infection. Trips in my truck can do it, but are not so likely as the truck seat is more amenable to voiding. However seats on an airplane and the bucket seats in the rental car make for a real problem.

Fortunately I have a plan for this kind of situation. I have a single dose antibiotic I carry with me, one designed specifically for bladder infections. It starts working within a couple of hours of taking it, and will continue working for the next few days. I can already feel some relief in that the urgency and incontinence have receded somewhat. However my urine is still a shockingly deep red.

The second trouble comes from David, of all people. He seems to be coming down with a cold, most likely also from the airplane ride. He went off today to get some cold medications; we are hoping that will stay the worst of it. This cold, and having to help me so much, is also making his muscles sore and tired, especially his back. So today I stayed in bed all day. He has had to do very little lifting, giving not just his back but the rest of him a rest.

The third trouble is my laptop. The hinge on the right hand side broke during our travels. The video screen is holding on by one hinge. I hope it holds on until we get home. Once home, I will take it into Best Buy and see if they can repair it. If not, the I will need another laptop.

David and I both came to one conclusion today, a sad one. It's highly unlikely that we will do any more travel. My needs have expanded. He is out of holidays until next year when my needs will be much greater, if I am here at all. It's too hard for David to do all this lifting and pushing. The light weight stuff is fine, but I am heavy and difficult to get into and out of the rented car. Again, my truck is easier. There is the bed transfer, the wheelchair transfer, the commode chair transfer; all of these are increasingly difficult.

Troubles come in threes. Let's hope for a better day tomorrow.

Tuesday, 20 June 2017

Speyside

We are in and down at the Daviot Lodge in Inverness. The town itself is about five miles away, while we are in a country setting just up the way from Culloden Moor, of the A9 on a narrow country lane, half the time paved, half the time gravel. There is even the obligatory Highland Coo in the yard here. Bucolic to say the least. Quiet, comfortable, relaxing after a long day of driving for David and a difficult day of bodily functions for me.

How I would do this without David I simply do not know. I can only say thank you so often, only apologize for my mess so often, only ask for help so often. It is difficult to deal with my physical failings on my own yet he seems so casual and calm about it all. He does all the loading, all the unloading, pushing my wheelchair, helping me with my commode chair, getting things I need, helping me dress, ensuring I am okay. It's amazing, and for this I am truly grateful.

This morning, after I got cleaned up from a night time disaster and not the jug kind, we headed out of Edinburgh, crossing the Firth of Forth, driving north into the Highlands. Our first destination was St. Andrews, ostensibly to take a look at the famous Old Course. In reality we were more interested in the University, the old castle and the old cathedral. Both the castle and cathedral are mere remnant walls, ancient reminders of what once stood proud against the sea and all enemies. Time and battle have taken their toll. All that remains of the castle is some of the outer wall. The cathedral is almost completely gone except for the two bell towers at the front and an aging graveyard.

We left St. Andrews, heading north to Inverness. The drive through Cairngorm Park was lovely, a classic highland setting, steep hills covered in low green browse, gorse here and there, heather abounding. We passed any number of distilleries as we moved down the Spey valley. Perhaps the most exciting sign I saw all day was the Speyside Malt Whiskey Trail. It is a further drive down the Spey, a few miles back of us. That is our plan for tomorrow.

We are taking it easy, not pushing too hard. Both of us are struggling with the seats in the car, bucketing us back into discomfort. For me, the seat makes it almost impossible to use my jug with any sort of ease. I had a catheter on this morning but the angle of the seat caused it to pinch, and ultimately to come loose, something I discovered just as we started touring St. Andrews Castle. I've done my best since then, continuing to struggle with dampness and leakage all day.

This is the real challenge of travelling in the wheelchair, of travelling with ALS. If I get wet, I cannot change easily. If I spill on myself, I just leave the stain until end of day. I can do little to help David, and even less to help myself. Yet here I am, thanks to David's help, touring the Highlands of Scotland, ready to explore the Speyside Scotch region tomorrow. It's still pretty good.

Monday, 19 June 2017

Fire Alarm!

It has been a relaxing kind of a day today, yet not completely spent in the hotel. David was worn out after yesterday, so chose to sleep well past noon. I am unable to get up and going without help, so I slept until will past noon as well. No matter, I needed the rest just as David did. By the time we got up and got going, ti was probably around 2:30 PM.

Fortunately for us, the HMS Britannia is a very short walk from our hotel, just across the street and down at the other end of the shopping mall. In fact the entry to visit this reminder of days past is actually a part of the mall itself. So you can't do one without the other. We walked over, through the mall, and took the tour.

It has become clear that I can no longer push my wheelchair any great distance, nor over any sort of rough surface. David clearly sees himself more in the role of caregiver and wheelchair pusher than in the role of travelling companion. It doesn't seem to matter to him; he just plugs along, pushing me and enjoying himself. I will be forever grateful to him for this, for his approach and for his willingness to help me enjoy both this trip and the others we have taken. I may be fading fast, but he is definitely keeping me going

Visiting the Royal Yacht HMS Britannia was interesting enough. What was more interesting was that the tour was suggested as an hour and 45 minutes, yet we managed to make it more than three hours. Certainly stopping for tea on the Royal Yacht was a highlight for us. David enjoyed the luxury of it all, along with the individual bar in each of the many messes on board.

For me, I enjoyed seeing the working parts of the ship. It reminded me of being on my Dad's ship as a child, and of the many other tours I've taken of various naval vessels around the world. The ocean and the ships which sail on her has long been a theme of my life. I was less interested in the luxury of the top decks; I will never live that life nor enjoy the splendour of being a "royal".

Our day finished with a bit of excitement. David and I returned to our hotel, to sit in the bar, enjoy a beer, and plan our tomorrow. We are headed north, first to St. Andrews, then to Daviot, just short of Inverness. As we were sitting, planning, the fire alarm went off. They cleared the hotel. I grabbed my laptop and beer. David grabbed my wheelchair handles and pushed. As we and all the other guests gathered in the parking lot, the fire department arrived and went into find the source of the alarm.

As it turned out, it was sort of a false alarm. One of the female guests was using her hairspray, far too much hairspray, in the vicinity of the fire alarm. The alarm sensed the gas and chemicals in the hairspray, and the game was one. She got her overly sticky hair while all the rest of us ended up in the parking lot.

David has called it a day. I am writing, drinking a beer, and relaxing out here in the bar. Some little fire alarm ain't gonna scare me off!

Sunday, 18 June 2017

The Royal Mile

It looks like my morning blog is going to become an evening blog for the next little while. Getting up in the morning is tough and time consuming, so getting underway is now more important than any morning commentary I might have. In addition, I have the evenings to recap the events of the day.

Speaking of which, it was an eventful day for us today. First of all, I got up at 8:30 AM, voluntarily. I blame it on vacation timing. The downside of an early start is that my eyes are near closing now.I am fairly sure I can stay awake long enough to finish this post. On top of the early start, we had a tremendously long day today, storming Edinburgh Castle then walking down the Royal Mile to Holyrood Castle. The real challenge was cobblestones; those things do a number on my back while in the wheelchair.

The upside is we got to see Edinburgh Castle. Because I am i a wheelchair, the cab was able to take us right up to the main gate. From there, a castle shuttle bus took us right to the top of the castle. After a great visit there we headed out of the castle and came immediately to The Whiskey Experience, just outside the castle main gate. These two stops took up most of our day.

I'm not strong enough to push myself around. My arms are too weak for the hills, and far to weak for the cobblestone streets, so David did all the pushing today, up and down the hills and across the cobblestone streets. He pushed me in and around Edinburgh Castle. In and out of halls and shops; through St. Giles Cathedral, all the way down to Holyrood Palace, and then around the Scottish Parliament building.I am not sure which is more tired; his back or mine, his arms or mine.

After a full day of exploring just this one part of Edinburgh, both David and I are ready to take it easy. We had dinner along the Royal Mile.I think sleep counts higher than food for both of us right now. No late night beer or Scotch, Just sleep, precious sleep.

Saturday, 17 June 2017

Glasgow Tenement Tour

After a massive day and night of travel yesterday, we landed in Glasgow at 8:10 AM UK time this morning. As with every other transfer on this flight, things went smoothly. WestJet has done a great job so far in ensuring smooth transfers from flight to flight, from wheelchair to seat, and back again. We did have quite the way to go to pick up the rental car. It was nice that one of the Glasgow Airport ground staff stayed with us the whole way, pushing me so David could focus on the luggage.

It was 9:30 AM before we finally got our car. Driving on the "wrong" side of the road was no challenge for David, however the stick shift and car turning radius has proven to be a challenge. It's fine, nothing that a bit of practice won't cure. I will say that my truck seats remain the most comfortable I've been in, although this car was pretty good.

Right out from the airport we headed for Greenock and Port Glasgow, both small towns along the Firth of Clyde where once shipping and ship building ruled, hard towns of tenements, shipyards, and warehouses. My great-grandfather, Adam McBride, was born in Greenock in 1879 at 24 East Crawford Street. The building is no longer there, having long since been torn down to make way for new tenements. My Mom's mom, my grandmother Rebecca Howie was born in 1910 in Port Glasgow, just a mile or so east of Greenock. I don't have an address to check out, so we just drove through on our way back to Glasgow.

Our next stop was on Duke Street in Glasgow where, according to the research David has been working on, my great-great grandfather, also Adam McBride, was born. As with the other locations, the buildings have long been torn down. It seems the homes of the rich are built to withstand the test of time while the homes of the poor bring no history with them and so are destroyed as time goes by. The one notable thing is that the location of my great-great grandfather Adam McBride's home is directly opposite one of Glasgow's oldest breweries. How convenient!

Our last Glwasgow stop was on Wolseley Street, Glasgow where my Dad's dad was born in 1902. Once again the old homes have long been torn down to make way for a newer set of row houses and small, working class homes in a village style setting. The most interesting thing was the old church on the corner, just a block or say away from where my grandfather was born. I can just imagine him as a child being trooped of to church on Sundays while his own father recovered from one too many glasses of Scotch the night before.

By this time both David and I had had enough. We left Glasgow and made the 90 minute trek to our hotel in Leith. This is the port city for Edinburgh, an area being reformed from old docks and warehouses to new government buildings, a major shopping center, and trendy loft homes and apartments. Ten years ago, when I first came to this hotel, there was little here. Now it's all new buildings or restored older buildings.

We checked in at around 2:00 PM. After a five hour rest and nap, David and I walked over to a nearby pub for dinner, a beer, and for me a shot of Scotch. Nothing like keeping the family history intact. Tomorrow, we attack the Royal Mile!

Friday, 16 June 2017

In Halifax

And we're off. David and I left this morning for our road trip to Scotland and Ireland. I managed to get up early, at 7:30 AM. David was knocking on my door at 7:38 AM asking if I was getting up. As is usual, the act of getting up and out of bed took some time, so I was just sitting up in my sling when Micheal arrived at 7:55 AM, to get my up showered, and dressed for the road.

So far things have gone well. The transfers to and from the car were not majorly difficult. The airport transfers have gone smoothly. WestJet has done a good job of communicating things as well as getting the right people in place to assist with the transfers. Not one person, other than the check-in agent, as even begun to ask if I can stand. They all seem to be singing from the same song sheet, an airline rarity.

As I write this post, we are flying over Lake Ontario, having made the first of our stops on this trek. We're headed for Halifax, where the plane will take on more fuel. It is also a security check stop, as we are headed on to the UK from there. So I will have to deplane, even though we are not changing planes.

Our plane change in Toronto was tight, only one hour, not enough time to get dinner and a beer. The same will be true in Halifax. Then, from there, it is only five hours to Glasgow, leaving little time to sleep on the plane. I'm going to try, but I will be avoiding the Zopiclone. If I take one of those with only five hours to sleep, more realistically four, it could really mess me up for tomorrow.

We arrive in Glasgow at 8:05 AM. From there we are planning to look around the city, check out some of the homes where my ancestores lived, then head to Edinburgh. David calls it the Tenement Tour. He's right. We were never a family of wealth; always a working man's family.

Since I am getting off the plane in Halifax, I am hoping to get a burger and a beer there. I will sleep better having eaten, and the beer might help a bit too. It's going to be a rough night tonight and a long day tomorrow.

Thursday, 15 June 2017

Packing For Adventure

I'm almost ready to start packing. In a few minutes, as soon as I finish writing this entry, I will get a load of laundry going. It will be the rest of the clothing I want to take on a trip. Packing used to be such a simple thing for me. I could get it done in just a few minutes. The clothing side is still like that for me. I can get my clothing ready fairly quickly still, although it does take longer thanks to ALS. On the other side, however, there is the medical packing. There are several things I need to pack in a separate suitcase, things I never needed before ALS and before the wheelchair.

To start with, I need a second suitcase. Fortunately the airlines, at least most of them, don't charge for a suitcase with medical equipment and supplies in it. Still, two suitcases, twice the packing work, both of them going slower each time I do it. The medical stuff includes the bucket for the commode chair, the seat for the commode chair, the small transfer board, an M-rail, at least one grabby stick, catheter supplies, and the bulk containers of my medications. The weekly container for meds will go in my clothing bag, along with a small portion of catheter supplies.

Weight is an issue. It has never been an issue for clothing, but the medical gear can get heavy. I need the larger suitcase for that gear, but not the largest one. I try to avoid that monster as much as I can. Oddly enough, the medical gear mostly folds down and comes apart for packing. That makes it better. But it is all metal or heavy plastic, not much light weight stuff at all. So the gear bag is inevitably heavy.

My clothes mostly fit in my carry-on bag. I can pack for a week in the small suitcase, with some leftovers going into the medical equipment suitcase. The benefit of this is I have my clothing with me at all times, an important thing if I need to change pants for some misbegotten reason. Catheters break, even on airplanes, especially on airplanes. My medications for a week and my parking pass also go in that carry-on bag. This time, no book. I suspect I will have little time for reading.

Today is it. My last day at home for a couple of weeks. My next adventure begins at 8:00 AM tomorrow morning. Let's hope it all goes well.

Wednesday, 14 June 2017

I Can Still Do Stuff

Yesterday I wrote about needing more and more help to live my daily life. It's true. I do need more help. There are now more things where I need help than there are where I don't need help. However this does not meet I am completely helpless. That will come in time, sooner rather than later. I suspect I have 6 months or so before I lose the use of my arms. After that, the end will come quickly. I do not plan on being tube fed or using a breathing machine.

In the meantime, I do plan on living as much as I can. As much as possible this means independent living, here in my home. It means living within my abilities if I have to, all the while stretching the boundaries of what I can do by changing the ways I do things. Yesterday was a good example of this.

I wanted to go see the Wonder Woman movie, so I posted on Facebook last week asking if anyone wanted to go with me. Jessica, a friend since I first came to Calgary, posted that she had already seen it but would like to see it again. She also suggested that we get dinner before going to the movie. So I said yest to both.

In the past I would have gone in my truck. These days I don't go anywhere in my truck without a helper, not only so I can get in and out, but just in case I get over-tired or somehow my driving becomes compromised. Also, wheeling around parking lots, into and out of buildings, can be very tiring for me. I need a pusher. So both my truck and my manual wheelchair are no longer the tools for this. Instead, I used my power chair and Calgary Transit.

I transferred myself to the power wheelchair, the one provided by the ALS Society, using the lift and sling, also provided by the ALS Society. New tools for new methods. I powered out to the bus stop, took the bus and C-Train to the where we were meeting for dinner and the movie. I left extra time so I could go shopping for a new doorknob for my front door, one of the lever kind. Doorknobs are getting difficult for me. I also picked up a couple of extension cords for my new deck lights.

Today I will install the lever doorknob by myself. If I work slowly but steadily, I can do this from my wheelchair using lightweight household tools. I will also plug the deck lights in to the outdoor outlet on my balcony. Oh, that outlet needs a new cover. I can also likely fix this myself too, although it is a bit low down for me. I bought the outlet cover yesterday as well. We'll have to see if I can do it.

Overall, there are lots of things I still do for myself, lots of things where my abilities are not limited by my illness. I know that will change as time goes one. That's one of the terrible and terrifying things about ALS; you know what's going to happen. You even have an approximate timeline, although you can never be completely sure of timing. That light at the end of the tunnel is a train, 100% of the time.

Nonetheless, you need to keep going, to keep living within your abilities, even pushing them at times. It's worth the exhaustion, the ache, the pain, the trouble. Otherwise you are left with just giving up. I'm really not much for giving up.

Tuesday, 13 June 2017

Me Do

My energy level is returning to normal, or as normal as it gets for me. Sunday, with Betty's Walk and the party afterwards, wore me out. I suspect all the wine I drank had an impact as well. Regardless, one busy day, along with a late night, can clearly knock me out of the saddle for a while. I am back in the saddle again, folks. Tonight I plan on going out for dinner with a friend, then the two of us will go see Wonder Woman.

The last few days, especially Sunday, have convinced me of one thing for sure. I have to let people do stuff for me, do more stuff for me. I have to let people help me, allow others to take care of me. I simply am unable to care for myself anymore. I am clearly no longer independent, no longer able to do things for myself. This inability runs right the way through from dressing in the morning to undressing at night, although I still do that on my own.

Kathy, my Home Care Aide, calls it my "me do" attitude. It's what her little granddaughter says whenever she goes to help her. "Me do, Grandma. Me do." the language may be somewhat imprecise but it certainly reflects an attitude I share. I want to do for myself, even at the price of exhaustion. On Sunday I could not. I could not push myself along the walk. I could not get myself in or out of my truck. I could not get myself a post-walk hot dog. There was no "me do" present.

After the walk, Brad took over in the kitchen. There was no "me do". I know he is better equipped and more able to handle preparing food and cleaning up. Tanya and Brian did dishes afterwards; I can no longer wash a sink full of dishes. I can barely wash a single pot or plate. Various people brought my wine. David and Brian helped with my failed transfer to the couch. Dan planted flowers for me. Andrea bought my new deck chair and a pretty string of lights for my deck. Kate helped get my laundry out of the way, as well as helping me in and out of my truck.

Today I let Kathy dress me, completely, although I did do some of the underwear work. The effort with my underwear left me tired enough that she just took over. I know Micheal will not do this, so I still have some "me do" in me for the next couple of days. David will help a bit, but there will be a lot of "me do" on our trip. Still, I cannot do it all for myself. I am compelled to accept assistance.

This has been a difficult mental and emotional transition for me, the change from feeling independent with some assistance to being fully dependent on the assistance of others. It's hard to lose that sense of self-reliance, of self-capacity. It's hard to give up "carrying my own water", as my Dad would have said. It's hard to accept that I am unable to look after myself these days. There is very little "me do" left in me. I'm sad to see it go.

Monday, 12 June 2017

Tired Of Writing

Yesterday was Betty's Run. It was a very busy day with an early start, so I didn't write. Today there is nothing on my agenda, nothing planned, yet I don't feel like writing today either. I am wearing down, running out of steam, and out of things to say. I've had lots of sleep, but I am tired. I've had plenty to eat, but eating itself takes energy out of me. I have water beside me and I've had my morning coffee, so I'm not dehydrated, nor am I lacking in stimulus.

I just don't feel like writing. So let's leave it at that.

Saturday, 10 June 2017

Another Bed

I have another one of those difficult financial decisions to make. I need a new bed, not just a new mattress but a new type of bed, an adjustable bed, one that will life me up into a sitting position. I am not yet in need of a full hospital bed, not by a long shot. However I do need something that will assist in my sitting up when there is nobody here to help me.

There are two choices. One is to take a hospital bed from the ALS Society. This choice is the cheapest; the will provide one for free until I die. However it means losing my current double bed and going down to a hospital single, including the loss of my headboard and footboard. It means not being able to turn over in bed from side to side; there's not enough room. It means my bedroom will look increasingly like a hospital room, increasingly sterile and lacking in my personal things, the things which comfort me when I am alone.

The second choice is to go out and by an adjustable bed, queen size, which will work with my existing headboard and footboard. The downside is that it will cost about $2,500, which is the last of my remaining travel budget. It will mean no more travel, no "fun" stuff. It will also mean cutting down on my winemaking kits and Scotch. However it will leave me with "my" bed intact, my bedroom looking at least a little less like a hospital.

One of my friends, when posed with this dilemma, basically said to take the hospital bed because it was free. I don't think people understand that saving money has little value to me these days. I know that I will run out of money again, eventually. I know that I will be begging again, eventually. It is only a question of time. That $2,500 will give me four or five more months. I will also give me the possibility of a cruise, or another trip to the coast. It leaves me with money to give my kids, so they can come to Calgary this summer.

So compare the choices. Another trip, maybe even a cruise. Going to the coast to see my Mom and kids one more time. Giving my kids money so they can come and see me. Or having my own bed in my own space where I sleep every night. And begging for more money in what is becoming an increasingly shorter future for me.

It begs the question. Will I need a hospital bed eventually? I hope not. Most PALS have a hospital bed so that it is easier to sit up, or adjust for fluid retention in the lungs, or lift feet to help with edema. Both types of beds will do this. My progression is such that I will likely exit when my arms fail completely, in perhaps six months to a year. But you never know with ALS. There are no certainties, just as with all mankind. Except the certainty of eventual death, in my case likely sooner than yours. Still, I cannot say for sure what will happen, or how long it will be.

So, spend the money on a decent adjustable bed? Spend the money on travel and make by bedroom into a hospital room? Beg sooner? It's a tough decision. I already know what I am hoping for. The rest of you likely don't want to hear it.

Friday, 9 June 2017

Rant On!

It would be reasonably fair to say that I have been under intense medical coverage since I was diagnosed with ALS on November 22,  2012. This is not to say constant medical treatment; I have gone weeks and even months without seeing a doctor or medical professional, other than my pharmacist across the road at Safeway. And up until today, I have had few, if any, reasons to complain about my treatment, both medically and as an individual.

I've gone through a lot with doctors and other medical professionals. I've been poked, stuck with needles, assessed, undressed, prodded and pushed. I've had every muscle in my body tested on a continuing basis. I've been handled by medical students, new neurologists, doctors covering for other doctors, and nurses beyond measure. In all of this, only once or twice did I get a feeling that the doctor was not listening or the nurse failed to pay attention. Even then, it was forgivable; there's a lot of pressure on these folks, not from me so much as from the demands of their work.

Well, today it finally happened, with, of all people, my family doctor. I am new to him and he is new to me, so perhaps this is just a learning curve, but I think not. He has a policy of not renewing prescriptions or providing any other services unless he sees the patient in person. This is understandable in many cases, and, thanks to our medical system, he only gets paid if he sees the patient. Therefore it is in his best interest financially to insist on seeing me before renewing a prescription. I get it.

On the other hand, getting in to see him is difficult. In addition the prescription for which I was seeking renewal, using the common practice at the pharmacy of faxing the request to his office, is one he issues for one month at a time, therefore guaranteeing I go to see him at least once a month. Furthermore he does the prescription with no renewals. So I have to get into his office to get what is a constant and chronic medication, for a constant and chronic issue.

So today I called his office. His receptionist was extremely aggressive and rude to me, saying that I was a chronic problem for the doctor in terms of my medications and medical needs. I found it both insulting and funny at the same time, that she would call me a chronic problem. No kidding. I have fucking ALS. That's a chronic illness! She made me feel terrible simply because I wanted the medications prescribed by my doctor.

She was even more aggravated when I told her I was going away next Friday and wanted these medications before I went. She said the doctor needed at least a week to ten days notice before any appointment. I pointed out that I was going away next Friday, a week from today, and that they had already had the request for three days. She offered one choice for an appointment, that one being Wednesday morning right in the middle of my Home Care appointment.

When I told her I couldn't make that one, that's when she hauled out the lecture about me being a chronic problem. I think I may have had four interactions with the doctor's office, so I guess I am a chronic problem. That's four interactions! She basically said that was my only choice if I wanted my medications.

What this doctor and his receptionist don't understand is that I have a terrific support resource in the ALS Clinic and the ALS Society. I call the Clinic and asked if one of their doctors could renew the prescription by fax. After I explained the situation to the nurse at the Clinic, she said I needed to look for another family doctor. She also said "No problem. Fax it over and I will get is signed on Monday."

Every single medication I take is a life long medication, with the notable exception of the odd time when I need an antibiotic for a bladder infection. There is no need for a month by month approach. The doctor could easily prescribe for a year in advance. The pharmacy will fill 90 days in advance, four times a year. It's a good system and I have it for most of my other prescriptions, those prescribed by other doctors.

This doctor's approach is basically a money issue. I get it. We all need money, especially a doctor, with high expenses and medical school to pay for. But putting me at risk, refusing to refill a prescription in a timely manner, is unprofessional, and completely lacking in compassion. I agree with the nurse at the ALS Clinic. It's time for a new family doctor.

Thursday, 8 June 2017

Telling It All

I'm tired. I'm tired and my biceps hurt, especially in my left arm. I'm tired because I am always tired, even after a night like last night where I finally slept well after several days of insomnia and exhaustion combined. I can sleep for 36 hours and wake up feeling tired, ready to go back to sleep. As to my arms, especially my biceps, almost anything is too much for them these days, so what muscles that actually work do so under duress. They are over-stressed, constantly pulled too hard, and thus subject to ache and pain.

What would I give for a day without tiredness, or a day without ache and pain? What would I give for a night where I slept well and a morning where I woke up refreshed? I don't know what I might give, but I am already giving my life to this illness, so I suspect that's as good as it gets.

The whole tiredness issue is frustrating because it takes away from my willingness to do anything. I am fortunate that people around me encourage me to ignore the tired feelings and get on with living. Even this morning Bobbi urged me to get up, waited for me to get dressed, helped with my wheechair transfer; all to get me out of my apartment, across the street to the mall. She even bought me a Peanut Buster Parfait!

The ache and pain part is much more subtle, surreptitious, hidden by efforts on my part to do as much as I can. It's also much more widely spread than I let on. To be honest, right now my feet sting from edema as do my lower legs. My thumbs and fingers have a background ache, as it I had arthritis, and maybe I do. My arms have had their say. My  neck is sore right at the base of my skull, where the muscles do all that work to hold my head up straight.

There is a lot that I don't say, a lot that people don't see. I smile. I make jokes. I chat. It seems I am doing well. At least that's the comment I get so often. I wonder what would happen if I just let it all hang out, showed the pain and exhaustion, talked about all the aches and muscle cramps, told people more about the pins and needles in my legs and feet, cried more with the frustration of this illness.

I suspect if I did that, there would be fewer people around me. Laugh and the world laughs with you; cry and you cry alone. Still, it would be nice sometimes to feel like I really could let it all out, let it all be known, tell the whole story. Of course, that's part of what I just did. So why don't I feel better?

Wednesday, 7 June 2017

Insomnia

Insomnia. It seems to be a common problem for PALS. I know it is a problem for me, although I wonder if last night's lack of sleep was a rebound from the Zopiclone episode of Monday and Tuesday. I don't really know. All I know for sure is that I went to bed at 11:00 PM and was still awake at 9:00 AM this morning.

I wonder if I am becoming dependent on the Zopiclone to put me to sleep at nights. It would make sense. While the drug is not supposed to be as addictive as other sleeping pills, it is entirely possible to develop a dependence on it. It is also possible to build up a resistance to it, so that you need more and more for it to be effective. I'm trying to avoid that but my sleep patterns are so messed up these days that it seems impossible to do anything but drug myself to sleep.

It's not hard to figure out, from a removed perspective. My body and mind are in complete disharmony. My body wears out quickly, so it needs rest. My mind is alert and active, even though my body is exhausted. Between the two, it's hard to get some sort of sleep alignment, where both my mind and my body are ready to shut down. Hence the Zopiclone; it shuts my mind down when I want it to shut down, forcing sleep upon me, even when my mind says I don't need it.

There are so many "side benefits" to this disease, insomnia only being one of them. This, along with constipation, belly fat, shaking, appetite problems, and just plain frustration make it even harder to sleep at night, or to wake during the day. I'm going to try again tonight, try to get to sleep without taking a Zopiclone. However Scotch may be involved as an alternative.

Tuesday, 6 June 2017

Zopiclone Overdose, Sort Of

WOW! Talk about a heavy hit from a drug! Now that I am awake, now that all the effects of the Zopiclone have worn off, I can look back and see how powerful that drug really is, especially in the right circumstances. Sunday night was the perfect storm of circumstances.

Sunday was a modest day when it began. The whole toenail thing amped me up a bit, but beyond that there was nothing too serious. In fact I felt well enough to attack a bunch of different chores. I did laundry, two loads, during which I had to move the dryer and re-attach the dryer hose. Try that from a wheelchair; it sort of got half ass done. I noticed later it was detached again. Oh well. Nonetheless, the laundry got sorted, washed, and dried.

Then came the kitchen. It was just too messy for me. I needed it to be tidied up. So while the laundry was in the laundry, I put away dishes, re-organized some shelves, and tidied the fridge. I also did a bit of tidying in the living room. It was all easy, simple stuff. None of it, on it's own, would be enough to tire me out. All of it combined was a bit wearing, but not too much, or so I thought.

I also had to clean the bathroom floor a bit. In my morning ablutions, I had made a stain on the floor. I wiped it up, but only served to push nasty stuff into the grout between my tiles. So I got the mop and scrubbed as best I could, until I could scrub no more. The rest would have to, and did have to, wait for Kathy the next day.

As the evening tired and I awaited laundry, I started to watch The Keepers on Netflix. Alongside the laptop, from whence I watched, stood a lovely bottle of Glenlivet single malt Scotch. So, over the space of three hours, some dealing with laundry and the rest just sitting, I had three, no more, glasses of Scotch. It was now midnight. I wasn't really sleepy, although I was very tired. It's a problem I have a lot. It's a problem I can solve with Zopiclone.

Normally I take one tablet. When I get to a state where sleep refuses to come, where I am tired but cannot shut things down, where my body wants to stop but my brain refuses, I will take one and a half tablets. Sometimes even that won't do the trick. Those times I just give up and do my best.

Sunday night I took one and half Zopliclone tablets. For some, this is a normal dosage. For me, this is a heavy hit. And boy did it hit heavy. After the usual 20 to 30 minutes of wait time, the Zopiclone hit. I was out, for the whole night, rock solid sleep. I must have been really physically tired, but my brain didn't get it, until it was too late and I was in the grips of deep, hypnotized sleep.

When Kathy came in on Monday morning, she woke me up for a moment to let me know she was here and about to start cleaning my apartment. I said something about the stain in the bathroom and watering the flowers. Then I went back to sleep. When she came in an hour later, I tried to wake up but simply could not do it.

I tried to lift my head to look at her, and said "I feel like I've been drugged." She replied, "You have been drugged, and you are tired. You need to sleep." That's the last thing I remember until about 4:00 PM that afternoon, when I realized I needed my pills. No Zopiclone. Then I awoke again at 6:30, desperate to use the toilet. I slinged up, got on the commode chair, and used the toilet. I ate some sandwiches Kathy had left for me, and then went right back to bed. I put on clean underwear and fell asleep.

At 9:00 PM, I awoke again. I had to pee. I also had to take my evening pills. So I did. Oddly enough I knew my body was finally waking up, something I did not want to happen at 9:00 PM at night. So I took one, and only one, Zopiclone tablet. Once again I went down hard. I woke up a couple of times to pee, but I had no real wakefulness until about 7:00 AM this morning. I stayed in bed, resting until Kathy came at 9:00 AM.

I'm up now. I feel awake. The continual tiredness of ALS has not left me, nor do I have any excess of energy. But I feel okay, like I slept well last night... and all day yesterday... and the night before. I'm not sure I want to do that again.

Sunday, 4 June 2017

Dan And The Toenail

Emily and Dan have left, along with Tucker the dog. My foot has been bandaged. Most of the bleeding seems to have stopped. The First Aid supplies are put away. I am dressed with socks on. Yes, I injured myself again. Yes, there was blood. Yes, I needed help.

A few weeks back, I ran into something with my power wheelchair, or perhaps my regular wheelchair, I'm not sure which. Apparently the impact was sufficient to rip the nail up on my middle toe. The nail sat in place, slowly dying, waiting for the most inopportune moment to fall off. It was black underneath and there was dried blood all round. I didn't notice for a couple of days; it's hard for me to see that part of my anatomy.

So I left it alone. Then, this afternoon while dressing, I snagged that toenail and off it came, mostly. Dan says it's still about half attached. Once again, I can't see that part of my body all that well, so I'm not sure. However I knew I was in trouble when the bleeding began. I grabbed a napkin from my dresser, where I keep a supply just for emergencies like this, and other. I quickly lifted my foot onto the bed, keeping the blood flow to a minimum, then blotted and wrapped. Crisis stalled.

What next? Why Facebook! What else? I posted a note asking if there was anyone nearby who could do first aid, and didn't mind ugly feet. Dan and Emily happened to be driving by, just a few blocks away. Actually he was driving; she was looking at Facebook and saw my message. So over they flew, along with Tucker the dog, to rescue my bleeding toenail. Dan used to work as a volunteer fire fighter and has seen his share of accidents. He has first aid training.

He, Emily and Tucker all showed up. Emily was the nurse. Dan was the doctor. Tucker was the sleeping object on my bedroom floor. Dan patched my toe up in no time. The bleeding seemed to have stopped. He put on a large gauze bandage to protect my toe and toenail. It also serves to make my compression sock slide nicely over the toes of my foot.

After a short but happy visit, they are on their way. I will see Emily next Sunday at Betty's Run. Dan may stop by after work for the post run pizza and wine. Tucker will stay at home. As for today, I am finally ready to start doing laundry. It's been at rough one so far, but much improved thanks to Dan, Emily, and Tucker the dog.

Saturday, 3 June 2017

Day Of Rest

It's been a busy week for me this last week, busy in the best of all possible ways. On Tuesday, Albert came by with my cheese and a beautiful bouquet of flowers for my table. On Wednesday, Kate came by and made a terrific Prime Rib Roast for two, the roast just the right size, with potatoes and Cole Slaw. Then on Thursday, Bobbi came by in the morning, encouraging me to get out of bed, bringing my a Subway sandwich big enough for my lunch and dinner. Later on Thursday, Myra came by with her dog, Deja. Deja is completely blind, but managed to sniff out a good section of my apartment.

On Friday, Liz came for dinner and we made Tropical Punch with Malibu Rum, and Tequila Sunrises. Finally, this morning, Tonny came and made me a terrific brunch. I was hungry and gobbled down a giant omelette, hash browns and a bunch of sausages. Now it is Saturday afternoon. I've had a bit of a rest after Tonny's visit, and I am sitting here wondering what to do with myself.

Maybe I'll just rest. I wanted to clean out my freezer today, but I have no helpers. Doing it alone may take too much out of me. On the other hand, it's not like I need anything out of there in a hurry, nor will anything spoil if I leave the task for another week, or even another month. Resting seems a much better idea.

Tomorrow I am scheduled to go to the Lilac Festival here in downtown Calgary. It's an annual event, celebrating the lilac blooms all round the city, but mostly just a street festival for the fun of it. I'm going to go. I'll catheter up, wheel over to the train station, and take the train downtown. Most others will be there at 10:00 AM. If I make it by 1:00 PM, I'll be lucky. On the other hand, there's a lot going on all afternoon; the ALS Society might even have a stand again this year. I'm sure I will find people. I know they will be watching for me. My friends are good that way.

So maybe a day of rest. Or perhaps laundry. I don't know. We'll see how I feel in an hour or so.

Friday, 2 June 2017

I Need To Sleep

To bed last night at 7:00 PM. Wake up at 10:00 PM to take my evening pills, including a sleeping pill. It doesn't work. I toss and turn until 11:00 PM. I take another half sleeping pill. It works. I go out quick, and stay out until this morning when my Home Care Aide calls from the front door to be let into my apartment building. It's 8:50 AM. Add it all up. It's nearly 13 hours of solid sleep.

When I get up, I'm feeling alert; weak as always, but at least my mind is alert. I go to the bathroom, and feel the energy start to drain. I have a shower too. It's work. I get dressed, transfers included. Even with Micheal's help, it takes effort. The energy continues to drain. I keep going.

It's been almost an hour since Micheal got here. I am fully dressed. And I am starting to tire out. I have exercises to do first. With Micheal doing his part, more work than mine, I feel even more energy draining from me. Each lift, each turn, each grab takes its toll. I almost fall asleep a couple of times while Micheal is holding on to my legs.

Now I have to do my arms; no help on these ones. I am barely functional, ready completely to go to sleep. My energy has pretty much left me. I am drained. Regardless, I push on, doing my arms. At least once I lose track of things, settling into a zone of bare consciousness. I need a rest. I need to stop. I need to sleep.

I finish my exercises. It's been two hours since Micheal arrived. The first out is getting me up and dressed. The second hour is exercises. Except we are ahead of schedule. It's only 10:40 AM. Then again, he got here at 8:50 AM, so it's close. He is supposed to make me breakfast. We have our continuing argument about the quality of cereal as a breakfast. He says that is all he is supposed to do. His other clients don't expect a "fancy restaurant breakfast." A fried egg sandwich would be good enough. I don't get one.

I grab the fruit platter from the fridge. I eat some fruit. I need to sleep. I go to the bedroom, but don't have the energy to put on the sling. I sit, falling asleep in my wheelchair, jerked back to life when I almost fall forward out of the chair. I grab the dresser and railing beside me, stablizing myself.

I go to the kitchen table. I put my head down in my arms. It's uncomfortable. I decide to make a cup of coffee. It's here. I will drink perhaps half. I don't have the energy for any more. I'm going to fight my way into that sling, and go back to bed. I need to sleep.

Thursday, 1 June 2017

Depletion

I'm tired today. I went to bed late and did not sleep well. The noisy fan on my night table did little all night but buzz and whirr while uselessly pushing warm air about my bedroom. I slept without cover, still sticking to the bedsheets with sweat. When Micheal arrived in the morning, I said I wasn't going to get up. I asked him to unplug the fan. He did, and that is all he did. He left immediately.

My friend Bobbi called at about noon, saying she was coming by, thus motivating me to at least get out of bed and partially dressed. It's remains hot and muggy in here. My living room fan, set to high, is at least pushing cooler air about this afternoon. The funny thing is that it is not really hot outside, nor is it particularly humid. It's inside, here in my apartment, where the heat and humidity collect, especially in my bedroom.

Bobbi asked if I needed anything. Food is what I wanted; I didn't want to prepare anything. She went to Subway and picked up a sandwich for me. When she arrived, I was dressing, so she took that time to water my plants. Then we sat down for lunch and a chat. In the course of that chat, she talked about working in her yard, then taking a long time to recover from the work effort. She referred to herself as feeling "depleted". A light bulb went on for me.

This is the feeling I have been poorly expressing for some time now. I am not depressed, not tired in the normal sense. I constantly feel what Bobbi described, a feeling of depletion, without restoration. I call it "worn out", but that doesn't do it justice. It is depletion. All of my energy and life is being consumed, without adequate replenishment. No matter what I do, thanks to ALS that energy and life will never be replenished. It will simply remain missing, leaving me perpetually depleted.

That's what I feel now. Yes, I am tired. Of course I am tired. I stayed up late last night. Yet it is not the tiredness that weighs so heavily upon me. It is the inability to replenish myself after any form of exertion, even the simple task of putting on clothes. The life goes out of me; very little comes back in, and what does, comes back very, very unwillingly. Yes, I am depleted. That's it.