Pain is one of the biggest complaints that I hear from other SCT survivors. I know it has been my greatest challenge. This video does a great job of explaining persistent pain.
In my last post I wrote about a book that my physical therapist asked me to read. Since then, I have been trying to find out more about the authors and their approach to pain. I found this video to be both informative and entertaining. If you have a few minutes to spare, you might give it a go.
I’ve been grappling with this question for years. How much should I tell my boss about my medical condition? On the one hand, I want them to understand some of the odd things that I do. Why I am so neurotic about prepping my classes (I must over prep, so I can still get through a class when my headache is so bad I can scarcely recall my own name), why I sometimes seem so withdrawn and antisocial (having taken my meds, I am saving what little energy I have for my classroom interactions later in the day), why I might be on edge or overly sensitive at times (wouldn’t you be if you’d had a headache for weeks on end with no relief?!), why I keep the lights off in my office, why working through lunch is not an option, why I need structure, why last minute surprises are so unwelcome… I know that it would probably help if my boss and coworkers understood why I do all of these things, but then, they could never REALLY understand (even my husband can’t really understand)… and armed with this information, would they be prejudiced against me in a new way? Instead of just thinking I’m moody, would they begin to see me as a liability? Would telling them bring new understanding that would dramatically improve my work situation? Or would things just get worse? Will they see this as a weakness that justifies skipping over me for promotions and tough assignments (rather than working with me to make the conditions right for my success)? The problem is, I can’t know for sure. I won’t know how they will react until I actually sit down and tell them all of the details of my condition. And since it is a condition that doesn’t show up on x-rays or in blood tests, I’ll just have to hope that they are open to my doctor’s diagnosis and don’t think it is just all in my head.
Interested to hear how others have dealt with this problem.
Here are some articles on the subject:
Evidently there are lots of people out there dealing with this issue.
- Chronic daily headaches (familyhealthmatters.wordpress.com)
Has it really been a year since I last wrote? I guess it has. At the time, I was a bit hopeful. Since then things have taken a turn negative turn. As I mentioned, my physical therapist and my neurologist both believe much of my pain and my migraines stem from Myofascial Pain Syndrome. I was doing physical therapy for it, but even with insurance, that is really too expensive to sustain. Massage also helps, but same problem. That is why the mainstay in my treatment plan for the past year has been muscle relaxers. I’ve fought against the idea of being chronically tied to muscle relaxers to treat my condition, but in the absence of any other solution that really works with my current budget… muscle relaxers it is.
With them I was down to a mere seven to eight days of horrible head aches per month… trust me, that is an improvement! But then I developed a chronic cough. First I thought it was my asthma. Sure, I know it had been years since I’d really had a problem, but… out came the albuterol and all of the other asthma related meds. But the cough persisted. Next step, antibiotics… but the cough persisted… a different inhaled medication… no help… a visit to a pulmonary specialist… and the verdict was… “there is no problem that we can see” – AH!!!!! I wanted to scream.
I went back to my GP, and he suggested that it might be silent reflux. Okay, so I go home and start reading up on that and guess what? It can be caused by taking muscle relaxers. Can you cue a loud scream right here? Since the cough had gotten so bad it was making it hard for me to do my job at work (and was often causing me to vomit), I decided to try to temporarally stop taking the muscle relaxers. Did this help… unfortunately it didn’t. Instead it just sent me into a tail spin. Now I am on week five of a head ache. The constant pain has me on edge. I’m depressed, irritable, and exhausted.
I used to play the viola.
You see, one day I was told that if I wanted to rid myself of the jabberwocky, I would have to do away with my viola playing. It shouldn’t have been a big deal. I’d only started playing as an adult, and I wasn’t even really all that good at it. Nonetheless, playing the viola gave me a joy that few other things gave me, and when I had to stop playing I felt like I had once again suffered a great loss at the hands of the beast.
I tried the guitar, but soon I found that it too was problematic. (sigh)
I was ready to add “making music” to the list of things that the Jabberwocky had taken from me when I decided to try one last thing. The piano.
Fortunately, being the wife of a musician, I already had a piano in the house, so it was just a matter of setting aside some time, sitting down, and getting down to the business of learning this new instrument, and guess what?! Well, it is too soon to declare victory, but I have managed a week of piano playing without any problems that I can clearly relate to playing!
Mind you, I have to keep it short and take constant breaks, but… but… is that music I hear?
I had been lucky for a while. With physical therapy I’d seen my pain decrease. In November I recorded nine noteworthy attacks. In December it was down to five. In January I topped out at three, and I was over the moon! I was beginning to get my life back. Even the slight increase to five in February didn’t alarm me. I was seeing patterns, and I was beginning to plan how I could make my life work around my pain. However, in the United States medical care doesn’t come cheaply. You need time and money to pursue the kind of cure I was after, so in March I didn’t have physical therapy. I continued my exercises at home (as well as I could), my stretching, my Tai Chi. I used a tennis ball behind my back while driving to give myself automessage. I drank lots of water, and I was conscious of my posture, but it didn’t matter. In March I recorded ten days of noteworthy pain. And now, the first day of April, I sit here, fighting the fog that comes with the pain, trying to think, trying to write, trying to voice my frustration with the system.
You see, I work! I work a fulltime job specifically to make sure I have health insurance to help with medical expenses; nonetheless, even with the health insurance, there are costs. Oh, but the costs are worth it, right? Well, let’s think this through. I work to get health insurance, but my employer doesn’t cover the full cost of the insurance. I still have a portion of the premium deducted from each paycheck. Then, when I do get a treatment, I have to pay deductibles, copays, and other expenses. What does that mean? Well, it means that I am spending more than a third of what I earn just on physical therapy alone! Which makes me start thinking, would I need physical therapy as much if I didn’t work? Or if I worked part-time instead of full-time? Maybe not. Does that mean I should give up my job and try to rearrange my life to minimize my pain in ways that don’t involve expensive medications and treatments? That would mean basically organizing my whole life around my condition. It just doesn’t seem right. I’m working so hard, and I still cannot really afford the care that I need to make me the most productive person I could be. It is so frustrating.
- Physical Therapy for Pain Management (everydayhealth.com)
The past week has not been a good one for me. I’ve had a headache on and off now for over a week. While it has frustrated me to suddenly be in the embrace of the Jabberwocky once more, what has been even harder is seeing how it has impacted my life. With pain I may be able to drive to work, to go through the motions of teaching a class, to prepare a test, to engage in small talk, but all of these things take so much more energy than they normally would! That means by the end of the day, when I reach my house, I don’t have much to give back to my husband. He prepares my dinner, he watches what is left of me as I eat my meal. We try to talk, but I am distracted and unengaged. My nerves are raw. I am fragile.
As hard as this is for me, I know it must also be hard for him. I know he agreed to “sickness and health”, but I don’t think this is the life he had in mind for us. I just wish I didn’t feel this way. I wish I were a healthier, happier, painfree version of myself. There are so many things I would do…
After years of thinking I knew my Jabberwocky, I have recently learned that the Jabberwocky is not all together what I thought he was. Oh, he is not completely different either, but some very important characteristics had somehow completely evaded me. What? You are probably scratching your head, thinking I’ve taken too many meds today, but that isn’t it at all. It is just that the past few months have allowed me to see the Jabberwocky in a new light. Now I know that my migraines are just part of a larger problem, and armed with this new knowledge, I hope to be able to confront my foe with more success.
So, you may ask, what is the larger problem that has been contributing to my migraines? Well, it seems that I have myofascial pain syndrome. I still can’t explain what that means with much eloquence, but I can tell you that it is kind of like having the feeling you get when you sleep wrong in at least one part of your body most days. One day you may have pain in your hip. Another day it might be your elbow. Your neck, your shoulder, your back, your knee. Some days it may be just a mild annoyance in one part of your body. Another day it may be a searing pain in most of your muscles. You might wake up feeling fine and slip into the pain halfway through the day, or you might wake in the middle of the night with it. You just never know when it will creep up on you. The worst part, you don’t know when the pain is cause for alarm and when you should ignore it. For the most part, if I can’t remember doing something to cause the pain, I assume it will eventually pass. I’ve been doing this most of my life.
Okay, this is where you say: “If you have had the pain for that long, why are you just now realizing that you have this condition?” Well, that is an easy one. You see, this condition runs in families. My mom had it, and I suspect her mother had it, too. When I would complain of a pain, my mother would ignore me or tell me that it was normal, so I just learned that the pain was something to endure. Part of enduring it has been adopting postures that reduce the pain. Very often this has meant adopting very bad posture. It is this response to the pain throughout my body that has, in part, been responsible for my migraines.
So, now that I have this insight, what am I doing to bring about a change? Ah, that sounds like a good topic for my next entry. Till then, hope you are pain free!