Part of how I finally figured out that I needed to be checked for EDS was that Mr. Wacky was working with me to help me understand what the doctors wanted when they said “relax your
I’ve tried meditation but I can’t stay awake. What seems to happen is that my obstructive sleep apnea kicks in and my airway collapses. When I talked to the therapist who taught me meditation I was told my falling asleep was a ‘therapy interfering behavior.’ Yes, she did know about my sleep apnea. I got very frustrated with myself feeling that I was subconsciously sabotaging my efforts. Combine this with not feeling much better physically (and in some ways worse) and I almost quit the class. Luckily I didn’t and more active meditations were the topic of the last few classes and I was much more successful with those. However, after a pleasant meditation session on the treadmill I would feel mentally better but physically awful. Originally I attributed that to the aftereffects of the exercise but the problem continued as I started to practice mindfulness more broadly.
I didn’t clue into the real reason for my mixed feelings about meditation and other relaxation techniques until I started to pay attention to how I felt after I used Flexaril. Like many people with fibromyalgia I don’t sleep well. Often I take a medicine to help me sleep and they quickly stop working for me so I’ve tried many. A few months ago the Benadryl I had been using to help put me to sleep and stay that way stopped working so I pulled out the Flexaril. It is a muscle relaxer that tends to be used be help people sleep. Well, initially I’d get about 12 good hours of sleep but for the next three days I’d scream in pain every time I moved and Mr. Wacky would come to me and put whatever joint fell out back in place. I’m not always the sharpest crayon in the box and it took me about five doses until I figured out what was going on.
So at this point I know that having relaxed muscles means that my EDS is more likely to act up. This really could explain why I honestly don’t like most physical relaxation exercises. Why do something that is neither fun nor good for me? While relaxation would seem good long term I think the short term increase in pain and the long term joint damage counteracts that.
This got me to pay more attention in general. I’ve had some very pleasant times recently and thus have been content and naturally relaxed. After a good night’s sleep with or without medicine I’d often be in a lot of pain. I’d thought it was from being so still but if I’d wake up in the middle of the night to roll over I’d often pop a shoulder out if I didn’t do it carefully. The biggest problem has been my toes, each morning I have to tug them back into place. All I can figure is that my muscles are relaxed in my sleep and so my joints are especially lax.
I’ve taken to making a nest of sorts for myself out of pillows. I’m surrounded on all sides and can’t easily move. This has forced me to wake up more fully if I want or need to change positions but I’m waking up in less pain overall. So, in theory I should now be safe at night now, right? WRONG! Last night I woke up with a band of pain in my right foot across the base of my toes. I couldn’t yell loud enough to get Mr. Wacky’s attention and somehow couldn’t even bring myself to try to put all the toes back in place myself. So I got out of bed and walked towards him until I got his attention. As I sobbed and apologized for bothering him he quickly and quietly tugged until I cried ‘Uncle’ and begged him to give up. Luckily by then he’d done enough that the pain started to ease although neither of us felt any pops. What happened? The weight of my blankets and comforter had pushed my toes back towards my body as I slept. *facepalm* I’m not even ‘safe’ in my own bed surrounded by my nest of pillows. I may have to get one of those contraptions for people with nerve damage in their feet to keep the covers from touching them. That just sounds like it will lead to chilly feet.
I’m almost scared to get too relaxed now. Well, the consequences of relaxation seem to undo relaxation rather quickly. I’m known for being wound rather tight and apparently this has served me well in terms of EDS. However, I don’t want to stay an anxious mess the rest of my life nor do I want to craft splints out of cardboard and duct tape out of desperation for every joint in my body. How do I relax my mind and spirit without relaxing my muscles? An ever better option would be to relax overall and still keep my joints in place.
