Day 99. Family Update and a Blog from Barry.

Family Update:
Day 4 Post-Op. Turned a corner yesterday. Moms leg strength which has been plateauing at 3/5 since day 1 post-op made its first improvement to almost 4/5 yesterday. It seems that the regime of spinal specific medication is starting to take effect. The neuro team is much happier with her progress and it certainly felt like a milestone day. 
She was up for 2 small walks yesterday. All of her IV's have been removed leaving her only connected to a blood pressure cuff and heart rate monitor. There are still general health concerns and the Autonomic Disreflexia to manage but it seems that exit from the ICU is now in sight. 

Chronic pain and the supportive spouse. 
By Barry Clout

Ok, here goes. A bunch of random thoughts about a tough topic, but one that needs to be shared. While I have 15 years experience on the topic, it is all with Maureen. So some of my observations probably only make sense in our specific relationship. My hope is that enough of my experience is common and makes sharing worthwhile. 
Maureen told me to be honest, so I will. Lesson 1; always do exactly what the chronic pain sufferer wants :-)
The hardest thing about the spouse role is watching your loved one go through the chronic pain situation day after day. Over time you realize that you can not go through it for them, so you might as well do what you can to make it somewhat easier. That takes many forms;

-Easy ones like tasks around the house
-Attending to personal needs as required (read: late-night January trips to the convenience store for Lays chips)
-Big one: adapting to situations. More on this later. 
-Look out for them when they can't look out for themselves
-Try to understand, which, really you can't, so just say you do and listen
-Lots of massages to chronic areas
-Stand back and let them do their thing

Here are a couple of more significant ways in which I feel supporting a spouse living with chronic pain can take form. 

Adapting. We are an active family. Chronic pain sufferers tend to be not-so-active. When the kids were little we went on a few canoe trips which is a pretty active and definitely on the rough side. As Maureen's health situation meant this was no longer an option, we adapted and bought a camper. That provider her with the type of comfort and amenities that made the activity possible, while ensuring we did not have to give up camping entirely. So many of our great family memories are from camping so in terms of giving something up, chronic pain had no impact here. We just adapted. 

Camping at our favourite place in Algonquin Park 2014

Changing plans on an instants notice. I remember when the girls were little and Maureen was caring for them full time at home. Those moms don't get to take sick days. Some days I'd be getting ready for work, thinking about the tasks I was going to accomplish there, and trying to be punctual. My head was into my job long before leaving the house. Then I would see Maureen looking pretty rough and realize she needed a sick day. That meant me staying home. Maybe this is a guy thing, but when your head is already into something, it is very hard to suddenly change gears. After doing it a few times, it does get easier though. Family has always been more important than career for us (as it should be for everyone), so I know I always made the right call, as hard as it was. 

Independence. This goes both ways. The chronic pain sufferer needs to have a self-directed life as much as anyone else. So stand back and let them do everything they want and can. You can't rush in to try to save them from themselves. It is very surprising how much Maureen can do considering what her body goes through. She out-walked me in Las Vegas one night, to my supreme embarrassment. That's just one example; she is physically capable of more than I generally give her credit for.
But the supporter also has to carry-on the same hobbies and social activities they normally would. I cycle and play in a band and have continued those things. I gave up ball hockey and haven't got involved in anything new for a while. Because I love being busy and trying new things, I would likely have more extra-curricular activity going on if Maureen was completely healthy. (That's being honest). So chronic pain eeks out one here, but "being there" for someone special in your life has its own rewards. 

Together in Santorini

Travel. This is where we meet half way. We both love to travel and are unwilling to give it up. I prefer an active, independent style of travelling. Exploring by walking and taking public transit is something I love. Maureen does too, but she hits her limit before me. We have balanced it out by mixing our holidays with a combination of active time and relaxation. Works for both of us. Where we meet half way though is in Maureen's insistence that she does as much as she can possibly do - and then some - with the full expectation that she will pay for it later. Her post -vacation recovery is longer but we both feel like we got what we wanted for our holiday. 

Re-invention. The reality is, that the complete and full life that us "pain free" folks have available to us ... well, it's just not the same for someone who deals with pain on a regular basis. There are limitations. Period. So accept it and let the re-invention begin. The use of technology (iPad, Netflix, Travel apps, etc.) provides some good opportunity to spend downtime together. We bought a tandem bicycle so we can ride together (but I get to pull her up the hills). When we moved close to the lake in Callander we wanted to buy a boat. Instead of an open fishing boat, we spent a little more and got a comfy one we can use for fishing and lazing around. We LOVE spending time out on the water. Life is still pretty full. 

I could probably go on and if the spirit moves me I will write another post later. I honestly don't know how Maureen has kept this up for almost 100 days. It took me 3 days to crank this out (but in my defence, I have been supporting someone through a traumatic surgery lately). 

Happy trails.