During the last six and a half years I have said to myself and out loud many times – “If I ever get through this, I am going to share my story so that I can help other people. I want to help others that are living with chronic pain learn to cope. I want to show them that it is ok to ask for second, third or even more opinions.”
As a registered nurse, one of my priorities was always pain relief for my patients. I researched pain. I watched patients in pain. Pain disturbs rest. Without rest, our body can not recharge, repair, heal. I thought I knew about pain, because it was important to me, and I had done a significant amount of reading on the topic. I was wrong. There is pain, and then there is debilitating chronic pain. It is like it takes on a whole different personality.
Since I had the goal to share my story when I was able, I thought that as soon as I had the permanent stimulator implant done, I would be bursting to get going. Actually, I have had to twist my own arm to work on this post. I am finding that I do not want to look back. I am not going that direction. I am going forward. I want to, and need to go forward so bad, it seems like torture to think about what it was like with the intractable skull busting headache 24/7. A promise is a promise though, I like to keep my word. I am hoping that it will still be therapeutic for me to know that even if I could help one person, it would make the length of time with uncontrolled pain worth something.
Right at the time of the accident, I immediately had the most exploding severe headache I had ever felt. It went away within a few minutes, well not completely, but the exploding part. The remainder went away within a few hours, so I did not think anything of it. I just thought that I had a basic whiplash. I took all of the appropriate precautions accordingly – rest, ice, then careful motion and stretching. I did not work out, I decreased my activity at home and at work. ( Prior to the accident I was a very active, energetic person.)
About two weeks after the accident, my muscles started getting very tight and reactive to the most minimal activity. Then it got to the point I could barely turn my head, or move my left arm. I went back to my family Doctor, started physiotherapy and went off of work. Things seemed to settle down for a few weeks again, until I tried to increase my activity again. My physiotherapist encouraged me to push through it. She didn’t realize that I had quite a high pain threshold. In other words, if I was saying it was painful to move, and not wanting to, it must be pretty bad. There was no way for her to know. I pushed through. There was some particular movements at that time that would increase the pain at the base of my head on the right side. She told me to just stop those movements and exercises, and continue otherwise. After two separate sessions with her I ended up with a pretty bad headache that lasted a few hours each time. When I reported this to her, she did not think too much of it.
My return to work arrangements went ahead as planned six weeks after I had started physiotherapy. During my first four-hour shift, every time I tried to do something with my right arm – reaching with something in my hand such as an intravenous bag (5 lbs), or pushing or pulling something the pain would come back. The second day, I recruited some helpers to get my patient out of bed. The patient was quite weak, needing significant assistance. My helpers suggested that I support her head, and they do the other tasks. I thought this would be the safe choice for me as well. During this patient transfer, just by holding the patients head, the pain at the back of my head came worse…and it did not leave.
I did not sleep much that night, or since then, until the last month – to be honest. By 11:00 the next day I was vomiting. I vomited frequently all afternoon, ending up dehydrated in emergency. I have never felt pain that intense in my life. There was no position that was comfortable. I could not even close my eyes, let alone sleep. It felt like something inside my head was trying to explode. A tooth ache that started at the back of my head, then wrapped up and around to the front in all directions. The pain inside my head was a beast with its own personality.
Next post I am going to talk about daily life, raising my kids, and road to diagnosis with the intractable skull busting beast that stayed in my head 24/7 for over six years. I am going to try to put into words what helped me get through the days. At the end of an assessment at a Pain Clinic, I was complimented on my techniques, and offered a job for once I recovered. They thought that I could bring something to their team to help people with chronic pain. So, please come back in case I have something to offer you or someone you know.