One month home

This afternoon I was in bed for an hour, hoping for sleep but grateful just to rest. It was during this time that I began to realize that this is where my ideas for writing come from. I guess I have not been resting much this month. Well, I knew this already. You see at Parkwood, when I had no one to talk to, I would write. Here at home there is always someone to talk to or something to do therefore much less writing is getting done. The other reason I wrote was to process, here I have Theo to help me process, which is nice because he talks back to me. So anyway, given some time to think this afternoon, I thought I should write a bit tonight - an update of sorts. After dinner.

Dinner and a round of spoons make me lose my flow. Let me see if I can get it back.

Since I have been home (one month) I am a little bit stronger, have landed on the floor only once and I have only one scabbed knuckle. I do not have the core strength to take casseroles out of the oven, but I can turn off the oven, open the door and pull out the rack so it won't keep cooking. My morning routine is becoming a little more routine and I have (most days) been on time to my morning appointments (10 am in Wingham). I am still fighting with E. coli in my urinary tract. My awful tasting tree juice (thanks Erin) may be working as I feel way better today then I did on the weekend. Two earlier rounds of antibiotics did not really knock it back - so my Dr agreed I should hold off on the third round seeing as I was less "symptomatic" since taking the juniper drops.

Physio is going well. Bill regularly comments on improvements in my core stability and Elaine says she sees my balance has too. I have started in the pool again doing a bit of strength, stretching and cardio in each session with Tammy. Today we swam in Wingham to try out the temperature and I lasted for an hour before I started to really feel the cold. It's hard to balance the stationary time with the moving (and therefore keeping warm) time. It's hard to decide when to say "I'm cold" because I want so badly to stay in and swim. My body's ability to maintain homeostasis is so out of wack, I don't even get goosebumps. Last week at Parkwood I got all measured up for the Ekso, so this week I will be walking. Check out Able Bionics who gave a pitch to Dragon's Den and got all five dragons to buy in! They are doing work that I may be able to tap into in the future. For now I will try and video my walking and post something here.

My endurance for being out of the house is pretty low, and my bladder only has a four hour window. I have not been very successful doing catheters in other places so we try to not stray too far. So I have had friends and family doing shopping and picking up things for me and the kids. Winter boots always seem to be a challenge and seeing as I have not been able to see what is in the stash upstairs, we just bought new. I know, Theo could look, but I think that room where we keep "stuff" has become so overwhelming, he does not even want to go in there. That is where online shopping comes in. I have lots of friends (um, Selena) who do all their shopping online. I have, up until now, not really been that keen on it. I like to feel the fabric in my hands, and try it on, before I buy it. Everything is different now, so why not? And man it is so easy! Doesn't help that it's "Black Friday" and every website had a sale. Credit cards are so dangerous. So, we got new sheets for the big bed, the kids and I have new boots (thanks Nancy) and we also have some new clothes on the way. When did I become such a consumer? In my mind some of the stuff is going back, I just need to see what works...

Last week was a week of firsts when it comes to cars and driving. I did my "driving assessment" where they tested my cognitive abilities (took about 40 minutes) and then said, "okay now we will go drive". Here I was thinking that they would give me some instruction using the model of the hand controls in the office, but no, we just got in the car. The instructor said "push for breaks and pull to accelerate, if you have trouble remembering that just think "stop" [here she holds her arm out straight palm facing forward] and push your hand forward." So I drove around the Parkwood parking lots, then across to Victoria then out into the streets of London (there's a song in there). It was fine, I was very cautious, but I am sure I will get used to the hand controls with practice - which I won't be able to do for 6 to 8 weeks because ServiceOntario takes that long to process my temporary driver's licence. Very frustrating.

The other first was buying a car. A new car. We have never done that before, quite odd getting to pick colours and features, we are so used to getting whatever came with the car that we could afford. So we went to Stratford on Saturday and bought a Mazda 5. It is a 6-seater station wagon with sliding doors. We will get it modified to have hand controls and will take out one of the seats in the second row so that I can pull my chair in behind the driver's seat. The Mazda 5 is the car of choice of all the people I have met in wheelchairs. Both the pharmacist and the dietitian at Parkwood drive it and I have even seen it set up so that the robotic arm is not needed to bring the chair in. I have sold my small but mighty Rio5, which makes me sad, no more stick shift for me.

It snowed here on Saturday. Wheelchairs were designed for city living. So just like they are not meant for farms, they are not meant for snow. We went to the lighting of the lights in Blyth (where I had the honour of flicking the switch) and I got stuck on the sidewalk. I was all "I'm fine! I can do it!" but it was hard going, and I for sure would have been stuck were it not for my helpful kids and husband. Sunday seemed nice, but I got outside just to do the ramp four or five times before going back inside, the driveway was not an option. How am I going to get out in the snow this winter?

So lots is going on. Each week is packed. Doing therapy now takes way more time because I can't just roll down the hall and go down the elevator to the second floor. I have to get out of the house, transfer into a car, the driver has to figure out how to get my chair in, drive and do it in reverse. Nothing is quick and it is all quite exhausting. Some days are okay and some days are awful. Theo says I need to write more when the awful days happen. Today's awful thing is my feet. Although I don't have normal feeling in my feet - I can feel them because they feel like they are on fire. You know that feeling you have in your feet or hands when they have been really cold, and the feeling is just coming back? That is how I have felt all day. It seems to be a new type of nerve pain that I have, it has not been this bad for a while. Maybe it means something good? Here's hoping it does.