Good Things

As promised, today's post will be about good things, complete with pictures.

First, a picture taken on our trip to Seattle:

 One afternoon while everyone I knew in town was either at the conference or at work, I decided to check out Pacific Science Center. After catching a planetarium show, I sat for a while in the tropical butterfly house, where a butterfly landed on my hand and wouldn't leave. It stayed for so long that one by one a group of at least 10 kids (all of whom had to be under eight years old) and their parents amassed to see "the lady with the butterfly." Several of the kids were trying to stand very still and holding out their hands hoping a butterfly would land on them too. After several minutes the dad of one of the kids standing around offered to take a photo with my phone and this was the result :-)

Second, a photo of me crossing the finish line at my recent 5K walk:

The walk was part of the annual Royal Road Race that takes place at the RCMP (Royal Canadian Mounted Police, a.k.a. "Mountie") training facility, which is here in town. The RCMP cadets were race marshals along the course, and since I was by far the last person left out on the course, once I passed by, the cadets were free to leave their posts and head to the finish line for brunch. One cadet decided that she would walk with me to the finish line, and everyone after her followed suit. By the time we reached the finish line, I had quite an entourage of Mounties in training, and was greeted as I crossed by four Mounties in uniform. They seemed to know that I was really struggling, that I wasn't sure I would make it, and without making a big deal about it, they rallied behind me to give me the momentum to push through to the end.

Third, evidence that Jeff was happily on board with this project at first:

The previous owners of our house had young kids, and they built a giant sandbox in which was housed a large play structure. When they moved, they took the play structure and we were left with a 16' x 15' sandbox. My immediate thought was that this would make a lovely raised garden bed if we put some dirt on top of the sand. But then I realized that it would be necessary to have some place to walk, so we got the idea of putting down some bricks or paving stones. But then we realized that those would just get covered up by the dirt, so we would need to essentially build raised garden bed walls around the walking path. The last thing anyone needs to do just after moving into a new house is undertake a major project like this, but the garden needed to be planted right away because of the short growing season here, or there would be no garden until next year. Somehow it seemed like a good idea at the time.

So long story short, what was supposed to be an afternoon project wound up essentially to be three full days plus four evenings of Jeff's time. I helped as much as I could, but with my mobility issues, fatigue, and problems with coordination, I was not able to do as much as I at first had hoped I would be able to do. Jeff is not exactly a natural with a power drill, so normally I would be the one to drill all those pilot holes and put in all those screws, but given my limitations Jeff courageously volunteered. There are places where the boards are crooked, where they are spaced such that there is quite a bit of screw visible between two boards, and where the screws go in at angles, but it is perfectly functional and none of those minor construction issues are really even visible now that the garden is filled with dirt (which Jeff moved from the pile 40 feet away one wheelbarrow full at a time, carefully placing each shovelful of dirt in the garden).

Yesterday we planted peas, lettuce, two kinds of carrots, two kinds of beets, Swiss chard, yellow zucchini, and two kinds of potatoes. We left room for a couple of tomato plants and pepper plants which we will buy at the garden center and plant in early June. By the time it was all done I am pretty sure that Jeff had had more than enough of building, prepping, and planting, but hopefully when we harvest at the end of the summer it will have all been worth it :-)

What I can do and what I can't

I have been dealing with it a lot of reminders lately about just how disabled I am. Most of the time on this blog I focus on things that I think people will be interested in hearing, and I generally try to stay positive, so I don't talk about some of the challenges that I deal with on a day-to-day basis. I also don't talk much about the challenges that people can't see when interacting with colleagues or socially. I think that sometimes this leads people to believe that I'm doing better than I really am in some ways. I am functionally much less disabled than might be expected based on my level of physical disability, and there are several reasons for that. One is that I have a job that doesn't require me to do a lot of physical tasks. The second, and biggest reason in many ways, is that Jeff does an awful lot for me, both at home and things that support me going to work. The third is that financially I can afford equipment and gadgets and all kinds of other things that we have purchased to try to make things easier for me. And the fourth is that I am very determined, and would much rather be doing things that not. Without all of these factors, it would probably be more apparent what my physical limitations are.

Of course I am getting better all the time. In the last two days I have done things that I have not done since surgery, and that I wouldn't have thought possible a few months ago (put some furniture together, brought laundry down to the basement, walked about 30 feet outside without a walking aid). But progress is slow, and it really is unclear how much better I will get. So because I am not always so clear about things like this, but I really do want people to know how I'm doing, I am going to give an update on my physical progress.

I still have serious problems with balance. I still have quite a bit of ataxia, more so on my left side than my right, and this lack of body control interacts with my balance problems in a number of ways. The most obvious is with walking, where I have difficulty making smooth movements and difficulty shifting my weight to the left side. Walking is all about shifting left to right, and I have to consciously tell myself to shift left basically every time I take a step. Some aspects of this are becoming more automatic, but in some ways as things get better more problems are uncovered – things that were hidden before behind some other problem. This inability to do an automatic weight shift to the left means any form of walking is effortful, inefficient, and sometimes painful when my body winds up spending time in a position that it is not designed for.

I still have very limited sensation on my right side, and unfortunately now I'm having quite a bit of neuropathic pain throughout the right side of my body. This lack of sensation, coupled with coordination problems, means that I cannot do a lot of tasks that I used to think were simple. For example, I can't reach into my bag and find my keys with my right hand, and it takes concentrated effort to do something like screw the lid on the toothpaste tube. The problem that I run into is that my right hand can't do it because I can't feel the position of something small and my hand, and my left hand can't do it because it's too shaky. I have found ways to work around certain problems, often using visual cues to help, but I am limited in what I can do. Also, I am no closer to being able to type than I was six months ago. I am getting better with the speech recognition software, but the software is very buggy and often causes problems on my computer. I can write with a pen and paper, but it is slow and requires quite a bit of effort, and after more than a couple of minutes of writing, I end up experiencing a great deal of pain.

The neuropathic pain I feel throughout my body feels sort of like what your hands feeling like when they get so cold you can hardly feel them, and then run them under hot water. It's like an intense burning sensation, with a sort of pins and needles feel. I currently take medication that makes this tolerable, but it never goes away. If I forget to take my medication (which I have to take four times a day) the pain takes up so much of my energy and attention that a lot of my physical abilities kind of start to fall apart. Also, doing physical tasks exacerbates the pain, which makes everything a little harder.

With everything being so effortful, I have limited attention to spare. When I'm focusing my attention on walking with my crutches for example, I really can't look around much. Shopping is excruciating and I can only handle it for about 20 min. Trying to integrate all that sensory information takes way too much attention. Apparently the region of my brain that was affected plays a large role in transmitting sensory information to parts of the brain where it is supposed to be integrated, and this process is a little bit disrupted for me.

I can't carry a class of water without spilling it, I can't just go for a walk somewhere, I can't leave the house without having a plan, I can't do things like prepare all of my meals if I want to have any energy left over for other things. Almost every single thing I do, from getting dressed and brushing my teeth to getting in and out of the car and driving, takes longer and I have to work harder to do it. People can see the mobility challenges, but it's hard to see the rest, because I compensate for it in one way or another, often by having Jeff do things for me that I can't myself. I am extremely lucky to have Jeff, to have a job I can do despite my limitations, and to have the resources to deal with this situation. I am not writing this because I want sympathy, I just want to try to share my experience. It's hard. And even with all of the challenges, there are many good things. I will share some more of the good things in my next post :-)

Things that have happened, in list format

1. We moved
2. It snowed the day after we moved
3. Jeff unpacked furiously while I went to work
4. All the snow melted, spring officially arrived, and we have had warm sunny weather
5. Jeff unpacked furiously while I went to work
6. I took my oral exam for licensing and passed
7. Jeff unpacked furiously while I went to work
8. I started teaching a condensed class where I have to cram 13 weeks of material into 13 class days
9. Jeff unpacked furiously while I went to work
10. We bought a dining table and chairs
11. Jeff started to burn out on unpacking, and was encouraged to take a little break
12. I walked a 5K using my crutches, in a time of 1 hour 51 min.
13. I felt like I had run a marathon
14. We barbecued with friends on our back patio, and had s'mores
15. I slept for 10 hours
16. Jeff finally took a break
17. I had to work even though today is Sunday because I still have 10 class days left to teach over the next three weeks
18. I promise I will post some pictures when I find some time!
19. P.S. So far we love our house!

Starting a Very Busy Month

A week and a half ago we spent four days in Seattle. It was supposed to be five, but our flight got canceled due to bad weather in Denver, so we left/arrived a day late. We had a lovely time visiting friends and eating lots of good food. I never used to understand the fascination of many people with going out to eat on vacations, but apparently that is because (at least partly) I never used to live in a place that didn't have good restaurants. I would really like to send out a memo to restaurants in Regina that Pad Thai is not the same thing as rice noodles fried in Sriracha rooster sauce. Besides the conference that Jeff was attending, all of our plans centered around having some of our favorite food with good friends. We packed in as much as we could, and had a lovely time. I will post some pictures when I have a little more time.

Tomorrow we move into our new house. We (really Jeff) have been packing since we got back from Seattle, and I think we are well-prepared for our move. We have unfortunately not yet found someone to take over our lease, but that means we have no rush to get everything moved tomorrow since we will still have the house that we are living in until someone else moves in. However, aside from possibly forgetting something, I think we will be able to move everything tomorrow and get it over with. As much as I am very excited to be moving into our new home, I do hate the process of moving.

In addition to moving, I have a lot coming up in the next month. On Friday I have to take the oral exam for licensure as a psychologist in Saskatchewan, so I need to make sure that I am familiar with all of the provincial and Canadian laws and codes of ethics, and I have been studying this past week as Jeff has been packing. I am also teaching a condensed course in the month of May, where I have to try to cram a whole semester's worth of material into 3 1/2 weeks. It will be an intense teaching schedule, and I have one more week to prepare before the course begins. And, Jeff and I signed up to do another 5K walk on May 11, and although I was able to complete a 5K in December with my walker, I am going to try to do it with my crutches this time which will be much more challenging.

That whole thing about slowing down and not overdoing it? It turns out I'm not very good at that. Maybe I should work at practicing acceptance that this is just who I am, and that is not likely to change!

Go Slow, Relax, and Don't Overdo It

When I was doing my internship at San Diego VA, I led several groups related to coping with chronic pain, and since then I have done a fair bit of work related to helping clients manage medical conditions. One of the key concepts that is always a core part of this type of work is pacing – balancing activity and rest. Often, when I see a client coping with chronic pain or some other chronic medical condition, the problem is about too much rest and not enough activity, becoming deconditioned, and then finding that activity exacerbates the condition leading to more rest and further deconditioning. It is a very frustrating and demoralizing loop to be caught in, and one I have been very careful to avoid. However, because of this I sometimes find myself at the other extreme – too much activity and not enough rest, leading to exhaustion and setbacks.

In my last post I talked about how I was walking around the house most of the time without any walking aids. Well, it turns out that I might have been overdoing it a bit. When my PT said to try this out apparently she didn't mean to start doing it all the time. Apparently it tired me out so much that I ended up totally crashing last Monday and Tuesday. Not quite as badly as I crashed a few weeks ago, also from overdoing it, by taking a trip out shoe shopping by myself. It was pretty horrible – I had multiple incidents of making mistakes at the entrance and exit to the parking garage with the little pushbutton ticket-spitter-outers, dealing with an overcrowded parking garage and no disabled parking spots, ending up having to go to two different malls because the store in the first mall didn't have my size and they assured me that the store in the other mall did have my size but they didn't so I had to get different shoes. I came home in tears thinking that I hated my new shoes (but I actually like them just fine). Jeff assures me that this isn't so different from my experience of shopping in my previous able-bodied state. But the difference is that now, after that incident, I was physically exhausted for about a week, and felt like I was moving backwards in terms of my rehab progress.

Pacing is extremely difficult during recovery, because it is important to push your limits in rehab in order to make progress, and if all is going well those limits keep changing, so it's hard to know exactly where the limit is. In my eagerness to continue making progress, I have recently apparently been pushing my limits a bit too far, and everyone involved in my rehab is suggesting that this strategy may not be in my best interest. We have been working a lot recently on trying to get my brain and my body to run some of those automatic programs for things like walking that I never used to have to think about. For the last 10 months this type of  movement has been effortful, requiring me to think about every part of every step I take – shift weight left right foot forward, shift weight right left foot forward, and a million other little things that are involved in walking just two steps. Shifting from thinking about every aspect of a movement to trying to allow the movement to unfold automatically requires a completely different approach. The goal now is to make room for the automatic process, and this means letting go of some of the effort. The feedback I hear over and over again during my PT sessions is to relax and go slow. It sounds like a good plan, but I'm finding it very difficult!