This is going to be a bit of a rant. Yesterday I received a letter from the orthopedic doctor and pain management clinic I was seeing for my upper back/neck pain. That letter turned my mood sour quickly. It said that I had been non-compliant with physical therapy and the spinal injections they had ordered, so they were kicking me out of the practice.
Why did it tick me off? Because the way they expressed it is totally not what we had discussed in person. First of all, I was not “non-compliant” with physical therapy. I tried it for several weeks and it WORSENED the pain rather than helping. It also caused widespread fibromyalgia and chronic fatigue syndrome flares throughout my body. This wasn’t the first time I had tried physical therapy, so I had been worried from the start, but they had promised they would accommodate my conditions, which they didn’t actually seem to do.
When I called the physical therapy office to explain that it was worsening my back pain and my fibromyalgia/cfs symptoms, they seemed understanding at the time. I was also having issues driving myself to therapy because when my back pain flares up, I can barely turn my head because of the neck pain. I asked the physical therapy office if I should perhaps try again in the summer when my husband could drive me, but the lady said that if the sessions were causing me that many problems, trying it again in the summer didn’t make much sense.
As for the spinal shots, the main reason I was fearful about going through with them is because they would not offer any kind of sedation. You see, I had been told how important it is for spinal injections that you be absolutely still during the process or you could cause damage to the spine. As an autistic person with severe sensory issues and intense over-sensitivity to any kind of sensory input (including pain), this worried me. I also have severe anxiety and that can sometimes make me shake and tremble involuntarily.
I had researched the shots and noticed that many other places offer sedation. I even talked to a few other people who had undergone the shots and had been sedated. I was not trying to be a pain or a drama queen, I was simply being cautious. Affording the shots was also a major issue at the time (since they required full payment up front), which I had explained to them.
In the end, I’m not upset that they were unable to further help me, I had already kind of figured that out. However, I am upset at the accusatory tone of the letter they sent me and the obvious insensitivity and lack of understanding for people who suffer from chronic pain/chronic illness and people who happen to have autism or other sensory processing difficulties. By the way, I will be sending them a letter back stating much of what I just said here. Hopefully they will learn something.
Having CFS/ME really sucks sometimes. On Tuesday I went to my traction physical therapy appointment for my bulging disc in my neck and they asked me to do a few minutes of really easy, simple exercises that should have been a breeze. Instead, here I am, 35 years old, looking fairly healthy and fit, and yet, I had to constantly take breaks from even these few little stretching and postural exercises. It makes me feel like I’m really living in an 80-year-old body.
It is embarrassing as well, because I fear the judgment of those who see how little I am actually able to do. I worry they will just judge me as lazy or think I am just being difficult, which is entirely the opposite of my personality. I’m the kind of person who goes out of their way NOT to cause trouble or slow things down. I often wish other people really understood how crippling chronic fatigue syndrome can be. For instance, all my adult life I ALWAYS took a shower every single day and washed my hair. Now, I’m lucky if I can find the energy to wash my hair every other day, even though my OCD traits are going crazy at the change in my lifelong routine. Even typing these blog posts requires frequent breaks.
Sorry if this post seems a bit whiny, it just sometimes hits home over little simple things, how much my life is affected by my new physical limitations, and it is hard to accept.
* Art by Maranda Russell
Well, I found out yesterday that as well as having degenerative disc disease throughout my cervical and thoracic spine, I also have a bulging disc that is pressing on the nerves surrounding it and likely causing most of the excruciating upper back pain I have been experiencing for several years now. The doctor wants me to do traction therapy and then see pain management for injections and other pain modalities that might help. I’m pretty bummed about it.
On one hand, I am thankful they aren’t pushing for surgery yet, but on the other hand I know the doctor isn’t ruling it out and that kind of scares me. I know for some people traction works wonders, but for others it doesn’t. I hope it helps me. Anything that keeps me from having to be eventually sliced open is a good thing in my opinion. I figured I would share this information with an old drawing I did years ago entitled “Crick in the Neck” (pictured above). I figured it fit the subject matter well, and it was always one of my favorite drawings I’ve done. If the treatments do help the pain, it would be really good for my art and my writing, as both are hard to do when my back is acting up (since the pain shoots down into my arms as well).
Since I have openly talked about some of my health problems and how they affect my life, I have had a few people ask me how I developed the foot condition plantar fasciitis and why it limits the kind of jobs I can do. So, I decided to make a vlog video about the pain and problems related to plantar fasciitis and why the condition has greatly affected my personal and professional life. I didn’t make this video to whine or try to get sympathy, I just wanted to share my story in hopes that I can educate people about the condition and let anyone else going through similar problems know that they are not alone.