With really only one notable exception, I haven’t posted here in almost a year and a half. That’s a long time, no matter how you slice it. Sit back and hold on – I know this one will shock you – in that time, my life has once more fallen apart and I am trying my damndest to fit the pieces back together, like a Lego tower a toddler builds, destroys, and rebuilds, time and time again.
Does that make me the toddler?
Because I really seem to have a propensity for destroying any semblance of routine or security that I trick myself into believing I have cultivated, only to have to rebuild something in its place.
A quick overview…other than my random Ash Ambirge post (I still love her madly, and have a lot to thank her for, but we’ll get to that later), we last left off in January of 2010. I went back to work in April 2010, and realized how much I loved my job. I got sick again in September 2010 and have been off work since. Joint pain and swelling, nerve pain and weakness/numbness, cognitive dysfunction, memory and speech impairment, extreme fatigue, balance trouble / vertigo, migraines, sleep apnea, some funky heart stuff, and most recently, about 80% hearing loss in my left ear. Those are the big things. Oh, and there are a bunch of lesions on my brain. Sweet. And to top it off, this past winter was perhaps the most debilitating depression I have ever had to contend with. I climbed into a giant hole and took a break from everything, including social media, for several months. There are plenty of other little things I won’t bore you with…I think that’s enough whining.
I now spend my life at doctor’s offices. For a long while, the prevailing theory was that I had MS. But three neurologist, two MS specialists, and 3 MRI’s later, it would seem that is not the diagnosis. And there but for the grace of God…
So, at least for now, that has brought us back to a diagnosis of Fibromyalgia. I guess I’m still having trouble accepting that a diagnosis of FM explains all the stuff I deal with. It doesn’t seem like a big enough diagnosis to explain the fact that sometimes I can’t remember my kids names. (Yup, it’s horrifyingly true.) Or that I can’t get out of bed for days at a time or make myself sound like I’m not drunk when I’m speaking.
It seems to me that we are striking diagnoses off the list one by one. Which is, of course, exactly what has to happen. But each diagnosis requires tests and specialists and time and energy. And energy is one area where I am sadly lacking. So it is a bit of a double-edged sword: getting a diagnosis for an illness, one of whose primary symptoms is fatigue, requires energy. Stick that in your pipe and smoke it.
Throughout the Fall of 2011, I completed a Chronic Pain Management Course at St. Paul’s Hospital in Vancouver. There was a lot of info I already knew, but it was great having it all tied up in one place. There were a few tidbits of information that I found immensely useful however:
- One of the most useful things you can do for yourself is DO THINGS YOU ENJOY. Sounds simple, right? There are so many things that I “need” to get done, and not enough energy to do them, plus I have spent so much time being afraid that insurance companies or work or people in my life who don’t really believe that I’m sick will see me doing something enjoyable and jump to, “well, if you can do that, then you should be able to do this” that I avoid one in order to avoid the other. Turns out, that’s dumb. (Not the first time I’ve made a dumb assumption; undoubtedly it won’t be the last.) In fact, chemically speaking, doing something that you enjoy does all sorts of good juju in your brain, releasing yummy ephrines and opamines and whatnots into the system which help you to feel better. Translation: doing something that you enjoy helps you feel better. Both mentally and physically. Say what? Life can’t just be full of musts and shoulds?
- It’s all about pacing. I can’t do all the things I used to. It sucks. Yup. Get over it. I’ve had to. I now have to plan my days and my weeks in such a way that I space activities out. Not too much in one day. Not too many days of tiring activity in a row. Rest time in between. I still feel like an idiot sometimes, but I literally have to plan to sit on the couch and watch TV, read/listen to a book, or nap.
- When I am going through a time of depression (October to March, roughly), I have to schedule seeing people and doing things into my calendar so I don’t hole myself up in my house and continue to spiral downwards. Period.
- For those of us living with chronic pain, pain is not necessarily a good indicator of injury. In other words, when we get to a point in activity where we hit the pain reaction, that is not indicative of an impending injury. It’s simply our hyper-reactive nervous systems hitting the “flare” point, and we need to learn to push beyond that point – gently, and over time – to become more active. Inactivity and chronic pain dance a frightening dance and one begets the other, and somewhere we have to break into that cycle.
Somewhere in and amongst all of this, my kids and I moved out of our house and into a townhouse. I think it was June of 2010. I had been so terrified of that move for so many reasons, but it turns out that it was the most positive thing that could have happened. Like most things we are staunchly afraid of, the reality surprised the hell out of me, and I couldn’t have been happier. I now have a dear friend who lives across the street. She deals with some of the same emotional issues that I do and is also an artistic soul, and we have been invaluable to each other in making it through the winter. There has been communal parenting when there needed to be. Our kids go to school together, and play out in the townhouse complex and park area constantly. Having a sense of neighbourhood and community was something that was always lacking at my old house, and that in and of itself has made this move worth it.
I think that about brings us up to speed. Now that’s over with, I can get back to posting about more interesting things…