Monday, 28 November 2016

Trying not to lose my shit

I posted this picture the other day, and it generated a bit of discussion. When I sent it to my parents my Mom said "I need some explanation, it looks like you are standing with a walker!" My response was "that is because I AM standing with a walker!" I was tongue in cheek when I said that, but that's because I wanted it to seem simpler than it is. That look on my face is somewhere between a smile and a grimace.

 For context, this is at Glassier's Physiotherapy clinic in Wingham where I do physio for an hour twice a week with Bill (in front) and Mark (behind). My friend Shannon took this picture; we used to work together but now we are physio buddies. It has only been in the last two or so weeks that I have been using a walker to stand, but we have been doing a lot to work up to this.

What you can't see behind me is the physio bed. I sit on the end of the bed and place my feet on the floor. Bill raises the bed and I scooch my bum to the edge, I hold on and Bill blocks my knees with his hands. We have been practicing this part for a while, I rock side to side a bit, testing my core. As the bed gets higher and I am more or less just leaning on it I let go of the bed and put my hands on the walker. Sometimes I need a bit of help, but other times I can just push my hips forward and get off the bed completely. Bill is still holding my knees (preventing them from buckling) and I hold most of my weight with my arms. In fact I am not really sure how much of my weight is in my arms vs. my legs because I can't feel it. I know there is some load going to my feet, just not sure how much. Today when we did this I lifted myself right off the floor and as I held myself there my toes pointed just like those of a ballerina. It was funny at the time, and eventually I settled onto flat feet.

Those pointed toes were the product of a great deal of spasticity that I have been dealing with these last few days. What is spasticity? Imagine that you clench every muscle at once in both of your legs at the same time. Now, without releasing those muscles, try to move your legs. Pretty tough. And with me, it happens as I change positions - from sitting to laying down (or standing up) is the worse - the muscles spasm right up to my chest and my lungs even feel it. It gets worse if I sit for too long, and guess what? I sit all the time. I think I have had increased spasticity lately because of medication changes. Hopefully when those changes have settled, so will my spasticity.

Now, as for the fashion statement I am making in this photo, I do not go out like this in public (well, not outside of physio). What you see is called an abdominal binder. Basically it is a girdle made of wide bands of elastic that truss me up with Velcro. I know, attractive, and now you all want one. Well this is where I get a bit crusty. Lots of people have said to me "oh, I need one of those". Others, while I explain that I need it because I have no working abdominal wall (while I pull in my stomach with my hands), say "oh, I don't have an abdominal wall either". Ha, ha.

It takes a lot for me to not lose my shit on them. I actually have NO abdominal wall. Remember? It's paralyzed? That means it does not work. Not just an abdomen that opted to not do a sit-up in the last decade. Muscles. Don't. Contract. Without. Nervous. Stimulation. [This is me trying to contract my abs while I sit and type this.] There is more happening in my abs compared to a year ago, but I can only make my abs move if I do it while holding my breath.

So instead of thinking "I need one of those attractive pieces of elastic to hold in my gut" - go do some sit ups, or planks, or crunches, or pushups, or one of those crazy viral facebook workout videos. Do it because you can.

Monday, 21 November 2016

Two hands

I drove Ella and her friends to swimming tonight. While enroute Rich Terfry was telling his audience about the most relaxing songs according to an organization that actually tested songs for these qualities. He then decided to play one (Coldplay) and Ella asked me (from the back seat) to turn it up. My response to her was that she would have to wait because, as we were going around the turn at the bottom of the hill just past The Old Mill, both my hands were occupied. It was this that made me think - humph, I bet most people don't think twice about taking their hands off the wheel to turn up the radio.

My right hand drives the spinner knob, located at the 4 'o'clock position and my left hand drives the hand controlled brake/accelerator lever. For months now my car has been more or less driving itself - with the cruise set between 95 and 100 (most of our road have a legal limit of 90 km/h). So today, when I had to drive with both my hands to deal with the wind and the snow on the roads, I was reminded how nice it had been these last eight or so months. On the way to Wingham, when my face was getting too hot I had to just bare it for I dare not take a hand away.

So as I set out now, in these days of winter, I need to have the radio set on the right station and the fan not blowing full blast because my hands will be doing more important things. Like driving.

Friday, 18 November 2016

Lower expectations

Years ago my friend Krista and I would run together when our girls were at dance. While we ran we would do what all young moms would do with their girlfriends - talk about our husbands (and our kids too sometimes). A common theme Krista and I had was that our husbands would not always do what we thought they should, which then caused the creation of a common saying between the two of us: Lower expectations.

Not low, just lower.

Krista and her family have long since moved away, but these conversations came back to me today (I miss you Krista). Now before you think I am talking about Theo I will have you know that the shed is coming along quite well. The walls are up, the plywood is on, the windows and doors are cut out and the trusses are set to go on next week. Theo has had some help (she gets up there on her own) as well as those that just like to sit around and supervise (that's me).
Look closely to see who's helping.

The person who I need to have lower expectations of is me. I know that I have talked about this before, but today I was reminded, again. At the end of the day I often pay for having had too long of a list. Today, I just wanted to do too much, knew I just couldn't and it really got to me.

I skipped going to Parkwood today so that I could attend a meeting about being on the Huron County Accessibility Advisory Committee. [More on that later.] The meeting was just before lunch in Goderich and it was a gorgeous day. November 17th and it was sunny and warm, the perfect day to head down to the lake. In my previous life I would have gone to the meeting, changed into my running gear, ran down to the lake, along the boardwalk, up and down all the staircases once or twice, ran back to the car, changed my clothes, met a friend for coffee and then picked up a few groceries on the way home. That was then, this is now.

 I was on my own today and was not meeting anyone that I knew, so I could not make plans to get help with my chair. I know I can do it on my own, and today I did, but it's not a perfect system and today it proved that yet again. First of all the only wheelchair accessible spot was taken so I had to park in the angle parking on the street. It was level, which was lucky. As I got out of the car and started to pull my chair the front caster got caught in my pulley system. I had to push my chair back in far enough so I could untangle the wheel from the ropes and then get it rolling back out of the car. Fine, got it out and got into where I needed to go and had the meeting.

Before I had even left home I had managed my expectations. I thought I would roll from the museum down to the square, maybe have a quick lunch, or visit a store I wanted to see. Then go home. I thought that was reasonable. After my meeting, when I got out onto the sidewalk and looked at how far it was to the square (it was not far - one full block) it seemed like miles. So I didn't go.

I started getting into the car and I thought maybe I would just drive down to the beach and roll on the boardwalk. But that would mean getting my chair in and out twice. It's easy to get my chair out because gravity helps. Getting it in is different. As I worked to get my chair in for some reason my legs spasmed out and I felt a little too close to the edge of my transfer board. As I pulled hard to get my chair in and not caught on the edge of the door frame...I changed my mind.

What did I do today? I went to the meeting and came home. I did not go to lunch or the beach, I didn't even drive down there. Doing so would have just made me think about what I could not do. I got in the car and drove straight back home. As I drove down that road, that straight stretch of County Road 25, where it crosses Council Line, where all this began, I got sad. Sad enough to cry. So I did.

Thursday, 17 November 2016

Happy Anniversary to me

This was to be posted on October 22nd. Somehow I missed finishing it.

365 days ago I came home for good. At my last appointment with my psychologist I told her that I was close to the anniversary of my release date and she said it sounded like I had been in prison. Which I was, in a way, but all for my own good. [I wonder how many other people have said that] Parkwood prepared me for what was to come - how to manage my bowels and bladder and look after my skin. All necessary evils, but clearly I did not learn how to balance my life. Only by experience do I learn this. Like yesterday I should not have gone to choir, I should have had a nap, but I went anyway. Today, this was how I spent my day.
In bed with my cat.
I had plans for today. I wanted to spend time with my family and my friends - celebrate (in a low key way) life by just being. Instead last night I had a fever and didn't sleep. Yet another UTI. Come on. This one is different, never have I had a fever and the usual tightness feeling I get in my legs has not happened. So yesterday, although I felt tired, I didn't have the usual signs. In fact, what I thought was happening was that my botox was wearing off, hopefully it was the fault of the bacteria.

We were supposed to go out for dinner to the local United Church fall supper. Instead we had the takeout version. My advice? Always have a plan B.

Tuesday, 1 November 2016

Coming down from the sugar high...

Most kids do this, right? Sort and organize.
How nice of them to place it next to the broom and dust pan -
making my job so much easier to just sweep it all out the door...
This is my current view. I am once again sitting where I normally end up most evenings - at the kitchen table with my head down on whatever I can find that is soft (tonight it is my scarf). I stay here (rather than go to bed) because then I can still participate in family life - even though that participation is limited to directing lunch making. My stomach is troubled again and I have come to the conclusion that eating sugary things pushes me over the edge. The edge is that line where I have had enough calories and need to stop. We all know stopping is hard - think (with slurred speech) "I couldn't eat another bite"...(now with a French accent) "but it is just wafer thin..." Although I don't explode my body sure reacts differently than it used to.

I eat way less now because I do so much less than I used to. It has been a hard adjustment and I am still learning. Foods that contain lots of sugar seem to have become a trigger for feeling awful. I have been trying for over a month now to not eat sugar. This includes all processed sugar as well as honey and maple sugar. It does not include fruit. Do you read labels on packaged food? Ketchup, all Kraft salad dressings, flavoured yogurt - second ingredient is sugar; crackers, baked beans, most cereals - third ingredient. It is very hard to escape unless you make everything yourself. This of course takes time and energy.

It's about balance for my body, and being knocked on my ass by three infections in two months was what made me decide I needed to do it. I know other women with paralysis who fight the dreaded UTI by eliminating sugar - and they swear by it. The balance you see is in having the right flora in your body and feeding it well. Having lots of sugar feeds all bacteria, good and bad. It's my hope that reducing the overall amount of sugar in my digestive tract and blood stream and taking in more good bacteria (probiotics, yogurt, fermented foods) I will end up on the good side of balanced.
Our Hallowe'en sunset
I have been doing okay with this sugar reduction, only the occasional transgression (like a mug of hot chocolate with marshmallows one night last week before bed). Last night was another cheat night - how does one ignore the temptation to steal from one's own child when they have SO much candy? Hallowe'en - it is such an odd tradition! Dressing up and going to friends, neighbours and strangers and asking for treats. You can't deny that it is odd!? But so much fun! At least last night was - Spiderman handing me peanut filled treats as fast as he collected them!

I was remembering last year as we got going - I had been home for nine days. I was hurting but so very desperate to participate and be with the kids and our friends. I lasted a half a block in the pouring rain and freezing cold. This year's balmy temperatures only required my down jacket and one lap blanket (instead of two) and my ski mitts. I was still warm(ish) by eight and only had one frostbitten finger (push rims are made of aluminium which suck heat from the fingers - even through the best of mitts)!
Who doesn't trick 'r treat at their local gas station? 
The other thing about this night is that it allows us an excuse to walk down our old street in town and see friends and neighbours that we don't cross paths with very often. Our first visit now though is always to the farm just outside of town where a friends' parents live. They are well into their 90s and are still on their own. I used to bring them eggs and have a brief visit each time - but my egg delivery days are over now so I don't see them often.  They have their own health issues too, but they keep going and they look forward to visits from the local kids every year. I was happy to be able to be a part of these traditions again this year.

Cinderella made her dress from one of mine - a former bridesmaid dress hidden at the back of my closet. I'm sure she found some mice in that closet who helped too. Not sure who that other kid is though, he just jumped into the car. 
Not all things were the same this year, after this picture was taken our two parted ways. Ella decided to trick 'r treat with her friends in a completely different town! We missed her, but know that she had fun too. Perhaps we shouldn't wait for this sugar filled night to get out and see our friends and neighbours. Maybe when the shed is done we'll have a costume-filled candy-free party. Life's short, after all.