Persistent Pain: A Patient’s Perspective
This series of blogs are offered up by a patient of mine. Ellen found herself struggling with significant dystonia and disability with regards to walking and generalized activities of daily living. Although the majority of my practice centers around pelvic health and persistent pain specifically, Ellen’s journey inspired me to apply all that I know about pain to a different output of the brain, muscle spasms.
Ellen shares her journey in the first person, with a realistic look at her struggles and triumphs. I hope that her journey motivates you, if you are someone with your own physical struggles. I hope that her journey also motivates therapists and clinicians to take a whole-person perspective for every single output of the brain…. Pain, muscle spasm, muscle tightness, urgency, frequency, fatigue, etc. The brain is an amazing organ, and the brain is driven to establish homeostasis; that is ultimately the purpose of these output responses.. The question is, “what is out of balance in your life, and how can you change that?”
Carolyn Vandyken, PT
Pelvic Health Solutions
Finding Hope: Setting Goals is not an easy task!
By: Ellen McLelland
In 2008, some mobility challenges that I had been experiencing on an occasional basis, became severe and forced me to take a leave from work. Thus began a search for a remedy from both traditional and alternative medical sources. Eventually I found my way to physiotherapy and Carolyn Vandyken. Her focus was on pelvic health and the mind/body connection.
One of the first questions Carolyn asked me was what were my goals for treatment. What did I want to achieve? I must admit that the question took me by surprise. I had not been asked that by any of the many doctors and alternative care professionals before. Initially, when I was sidelined by my condition, I had specific expectations that I could return to work, first at Easter, then after the winter break, then in September. I was a teacher and I fully expected that somehow I would recover. After a while, as my condition settled in and worsened, the only goals I seemed to have were immediate and urgent goals such as taking a shower, getting from one room to another, making a simple meal with help from my husband. Beyond that, I did not have any expectations.
Carolyn explained to me that through her experience, people who had the most promising chance of recovery had specific goals that they worked daily towards. The goal provided hope and motivation to do the hard work it takes to recover. At that point, I think I quickly made up some goals that came to mind; getting off medication, walking without supports, independence. I must admit, while those were things I really wanted, they were not things I expected to achieve. I felt little hope that they would happen. Having a real goal that filled me with hope and excitement was a long way off.
We had to start with small, achievable physical goals that could be measured, practiced and achieved.
At the same time, I was seeing a behavioural psychologist prescribed by my insurance company. He also helped me set small, physical goals and chart them. Together we made a list of things that I could not yet do but could possibly accomplish with practice. I had a list of ten or twelve simple tasks that I would do and an upward scale of difficulty on a daily chart. Because I had lost mobility and the partial use of my right arm, the tasks were things like walking back and forth from the bedroom to the living room without support, putting dishes away in the cupboard, first by holding on to the bottom cupboard and increasing to where I would put the dish away without holding on etc. I worked on these consistently. The problem was that I would sometimes be able to do things easily without any problem and then I wouldn’t be able to even attempt it at other times.
Carolyn’s solution was to give me imagery exercises for activities that were too difficult to do, and just some simple physical exercises to get started with. At first the exercises were very gentle and were heavily focused on practicing things in my mind. Using visualization helped to practice the motor pathways of movement in my brain without triggering the spasm that would often go with it. Gradually we worked towards more physical activities. Again I kept a chart and recorded how often I did each exercise. What gave me hope was that as I progressed, I could see that while at first each exercise was extremely challenging for me, in a short period of time, I found the exercise easier and I had more balance and success. Carolyn would then move the bar and assign harder or more challenging work. Gradually I could see my abilities improve.
When things went in the wrong direction, Carolyn explained that recovery is never a straight trajectory on a graph from low to high but more like a wave where you continually move forward but there are highs and lows on the way up. This encouragement and lack of judgment in treatment creates hope and a positive attitude towards the process of recovery.
Eventually, I had reached a point where I could function fairly well within certain confines. I began to plan a trip to Australia to see my daughter and baby granddaughter. These were powerful motivators and I was rejuvenated in my desire to be faithful in the mind and body exercises as well as to use the skills and knowledge that had been shared with me by Carolyn and my behavioural psychologist. I had a definite goal and a timeline. I thought if I could just make it there, see my daughter and my granddaughter, that would-be accomplishment enough.
However, something amazing happened. I found I was able to do far more than I thought possible. I visited caves and with a little help, explored amazing places, walking up hills that I thought beyond my capability. The desire to go and see the amazing sights and to experience them with my loved ones propelled me to try harder. The more I did, the more hope I had, and each experience fed that hope.
Returning home, I have felt a renewed desire to move past this middle ground. I feel energized to work harder at the tasks before me, to be more faithful in all of the mind and body exercises, and to use all the information that has been so generously supplied for me. The unexpected benefit of my trip is a deep hope that recovery is possible. I still struggle with the idea of complete recovery because I still experience those highs and lows on the way up that road. I am working on visualizing the possibility that one day, I will walk free of support and assistance. In the meantime, I am working on enjoying more of the life I have now and focusing on the wellness opportunities open to me.