I told myself that I would be as open and honest about my struggle with my health and wouldn’t hold back anything. This, I write at a good place now, and I also know it is important to be vulnerable so others can feel the weight of freedom with being vulnerable and knowing they are not alone. I know that I’m not the only one that has had to walk through suffering and unknowns and I feel that is important to speak it out no matter how ugly and yucky it may have been. Some of you that read this may even think “coward”, I mean I did when I thought back to this time. So here goes nothing. (big exhale)
I lay on the couch heating my aching body when the words finally came and the burst of confidence just spewed out of me. “I’ve decided that I will give this new physiotherapist my last best shot but if it goes like how every other time went…well, I’m done. I’m done fighting. I have thought about it a lot and would like to have an assisted suicide.” My husband looked at me with shock and hurt and disbelief that those words came out of my mouth. “You can’t be serious.” “Yes, yes I am. You may not understand it because it’s not your body in excruciating pain 24/7 where no one is able to help or give relief, but I’ve put a lot of thought into this and this is where I’m at.” “I can’t believe you would even think like that.” He said. It had been years of barely sleeping, of receiving judgement and hard news, disappointment after disappointment and suffering, lots and lots of suffering. Broken dreams and broken hope. Failure after failure. My body continued to fail me and I wasn’t getting any better but worse. I was now having issues in my feet and I struggled some days walking down the driveway and back.
I‘m going to rewind a little bit to give you a bit of an understanding of how I came to this conclusion. Many people in my support group talked of their suffering. Many had started off just like me and progressively got worse, to the point where many have been bed ridden or now in wheelchairs. This one woman was completely transparent and told us how she had her appointment all booked for an assisted suicide. She had fought a long hard fight, had a daughter and had decided that she would give PRP injections her last ditch effort and if that didn’t work, well, she was done. She had the treatment and in the first time in years had finally received chunks of her life back and decided to cancel her appointment for her timely death. This to me, was where it brought hope but also the reality of feeling like a failed mom and wife. The reality of how my body just wasn’t working how I wanted it to and the reality of timeless disappointment, not only for me but for my family. Over five years of our lives had been dealing with me, waiting on me, working on me and I was so over it. It was no life and if my future was this, but even more worse, I couldn't bare it anymore.
I know it sounds selfish and yes, maybe it is. In my mind, at that point in time, I knew my family would grieve me but then they would also be free from the noose wrapped around their necks. They could start fresh and live life more full than constantly watching me suffer and feeling helpless. To not feel like my caretakers anymore but to be able to do as they pleased. I hated having to watch my girls hold themselves back because “mom’s body can’t handle that.” They cried a lot and got angry with God because their prayers of healing weren’t being answered. I watched them having to do extra duties, my duties as a wife, around the house as I lay there trying whatever I could to bring down my pain levels somehow. I watched their faces of disappointment as I had to cancel fun plans because I had gotten maybe an hour of sleep and was completely exhausted. Me and my husband's relationship being slowly chiseled away. Over and over. List after list of heartache of pain and frustration and, to me, all of that could be over.
I had booked my appointment with this new Neurokinetic Physiotherapist but as you had learned and read from my previous post, that plan got completely kiboshed because I was extremely ill for quite sometime. I wouldn’t get to start this new avenue for close to eight months. Once I got my footings, I decided to put my best foot forward but I was leery and had my other foot propping the door open to my possible ending.
I filled out the intake forms online and we went over them in his office. He was confident, like a little over confident but any question I had, he had an answer for, which made complete and total sense to me. He knew his stuff and my first impression of his over confidence turned into trusting him and knowing that he knew what he was talking about. He was extremely smart and skilled. I had dreamt up this type of treatment and here I was having my dreams become a reality. It was magic. He was a magician. I was more than impressed, I was blown away. He could test my nerve pain and muscles to my brain and find exactly what was over compensating or under working and give a targeted exercise that actually worked! For the first time ever, I noticed a little sliver of change and I was hungry for more. Unfortunately, I only had a few in person sessions with him and that’s when COVID hit and everything shut down. However, we made things work and did zoom meetings. Even though it was challenging and, at times, a bit frustrating trying to do physio over video chat, I was given tools to help my pain. I had never been able to be in control of my body. I had always had to rely on chiropractors or massage therapists to bring a pinch of relief but now I was able to have a little control and could help myself a bit at home. It felt good, like really good!
Thankfully we were finally able to resume in person physio and more and more, I saw little improvement. I felt like Charlie, from Charlie and the Chocolate Factory, running around waving my golden ticket. I wanted any and everyone to know about my physiotherapist and his technique. Especially those that have suffered for years and have had numerous failed attempts and money thrown down the drain. I don’t understand why there aren’t other physiotherapists like this and why it was so hard to find someone that truly knew what they were doing. He has such a gift and there are no words that I could ever say that would give justice to saying thank you. He saved my life without even knowing it. He has been my family‘s answered prayer. My golden ticket.
I know this isn’t the end all fix all, but I’m seeing little pieces of life that I had lost, come back to life. It has been hard daily work and many, many hours of physio. Some weeks my homework takes me close to three hours a day to do, each and every day. I have been living and breathing physio. It has been good and hard all rolled into one.
Though I have been at this for almost seven years, I am at square one with my physio treatments. I have to constantly remind myself that it has really only been a year and a half of REAL treatments. I liked how my physiotherapist put my condition into these words. He said, “If you take a computer and get it x-rayed it would look like a perfectly good computer. But if you were going to try and turn it on, you would see that a lot of the programs weren't working. That there is something wrong with the hard drive. That is what your body is like.” He told me that it will probably be another six years of hard work to get my body more “normal,” and I would likely have to do continued maintenance there after, but there is hope and he is confident that he can bring my pain levels down significantly. I had heard sprinkles of hope like this before but this time it was different because I have experienced glimpses of it. The proof has been in the pudding.
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