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The Wheels on the Bus

December 7, 2014

Oct 9, 2014

For 27 consecutive work days, starting today, I got up at 6 am to commute to work for a 7 am start. During this period, I detoured home via the hospital twice each week for a recurring 4 pm appointment, returning home 11 hours after my day began.

I delegated shopping and cooking to my partner and family (or was it abdication?), and often fell asleep during dinner on weeknights. I was also responsible for drop-off and pick-up in our Girl Guide carpool, for most of those Monday nights. (By carpool, I mean that the kids walked it and I supervised from my perch on the scooter.) I taught one night class during this period, on a Thursday night, in a nearby fabric store. All of my commuting was accomplished independently by mobility scooter. I often fell asleep during dinner, or before it began. My weekends were reserved for catching up on my sleep deficit.

For every 100 metres I cover on foot, my body extracts a toll of 1 extra hour sleep. I found these hours added up quickly at the office even with little things like short strolls to the ladies room. My blood sugar hovers in the range of 30 mmols lately, even with careful carbohydrate counting and the aid of an insulin pump. The coffee keeps the fatigue at bay long enough for me to get home, but between in and the blood sugar level, I am fighting inquenchable thirst. In addition to the coffee, I drink uncounted glasses of tap water during the work day.

The frequent trips to the hospital are required because the specialists currently believe that we have a problem that might benefit from a fairly harsh medication. There was a lot of testing required to determine if I would be a suitable candidate to start this drug, and it will require close monitoring now that I have been approved to take it. By that I mean an increasing number of lab tests and medical checkups.

I prepared my own lunches and breakfasts, and these travelled to work with me on the scooter. In the first few days, my partner acquired an automatic coffee maker and encouraged me to travel with his 1 litre thermos. We set it up in the evening so that the coffee was freshly brewed by 6 am. By the 25th day, I was travelling with a second thermos of coffee, capacity .5 L.

On the 27th day, I made two unplanned stops on the way home to charge the scooter. The weather was completely frightful. I began travelling with the charger on my hospital appointment days. The scooter is an electronic vehicle and has limitations. I have since learned that the charger is not intended for outdoor use, and have stowed the scooter for winter. The 27th day completely destroyed the charger I had purchased with the scooter and it has since been replaced under warrantee.

November 18, 2014

On the 28th day, my partner and I devised an alternate mode of transit to get me to and from the office. He drove me 1 km to the Transitway, where I could wait indoors to meet a peak hour commuter bus which took me directly to and from my office buildings. At the office, I can wait inside the foyer until it is close enough to see. For 5 consecutive work days, we left the house at 645 am.

I considered my alternative: a power wheelchair and ParaTranpo. I priced out various new and second-hand scenarios and downloaded the forms. There are steps to my apartment, and without a ramp, I could not probably care for it. Also, there is no space for one. The wheelchair scenario would force a move to more accessible quarters. With school age children, this is something I would like avoid or put off as long as possible. The apartment itself is main level.

It is too much to walk the 100 metres from my front door to the nearest bus stop, and more than a minute or two is too long for me to stand waiting for a transfer. I have been physically unable to drive for some time. Once a doctor completes the ParaTranspo forms with a patient, it can be a 3 to 4 week wait before approval comes through to use the service. Using such a service eliminates the need to walk and wait outdoors at a regular city bus stop.

Starting next week, I will be working some of these days from home. Not because I need to, rather because the insurmountable office obstacle (IT policy) has been surmounted and it is now logistically feasible to bring my work home without jeopardizing my position by violating policy. I had been waiting on multiple official signatures. A work-at-home arrangement had been offered and agreed upon before I set foot on the premises. My manager and his manager had both agreed the work was better suited to a home office before they set out to staff the position.

November 30, 2014
I ran some errands by car. My blood sugar readings remain erratic but I start to see some single digit readings.

December 1, 2014
I took the third weekly dose of methatrexate. We stowed the scooter for winter in a heated locker, because I had to, not because I wanted to. I am now working 4 of 5 work days from my home office, with Mondays only in the office. Today was one of those Mondays. My blood sugar level remains erratic and now hits levels too high for my glucometer to read. I skipped on carpool in favour of teaching another class.

December 2, 2014
I went for an 800 metre walk and did not fall asleep during dinner.

December 3, 2014
I walked a bit longer.

December 4, 2014
I ran an errand on foot.

December 7, 2014
I look forward to the promise of tomorrow’s 4th dose. I am not yet showing any signs of drug allergy. I am checked for poison on a weekly basis at the blood lab. The drug is expected to take full effect after the 5th or 6th dose.

I am mostly writing this down for my future reference. It has been a crazy time.

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