Tuesday, November 25, 2008

One of those days

I'm having one of those days (or weeks, since it started yesterday) when it seems everything I try to do turns out badly. Yesterday I actually fell down in my own apartment - I stepped on the side of a pile of blankets and cushions I'm trying to use for a foot rest, turned my ankle, and fell against a chair. I was carrying a pile of materials to return to the library, which fell out of my hands, but not fast enough for me to break my fall. Thankfully I landed mostly on the cushions, and moderately hit my back rib on the chair. I have very flexible ankles from swimming, so I didn't sprain anything. Still, it was quite a shock to fall down. There were a few other minor things that happened yesterday, but nothing huge. Today I was planning to sit down, watch a DVD and finish knitting my dog's sweater, but my DVD player finally stopped working. It has been on the fritz for awhile, so it was not unexpected, but frustrating. I don't have any money to replace it, and my cable was shut off recently, so I have almost no viewing choices. My VCR is getting worn out, and I have very few videotapes. I also have unusable speakers on my computer. Well, this felt like the last straw in terms of keeping my mood on the positive side, which I'd been able to do so far. I felt so angry because my plans had been ruined, that I didn't know what to do with myself. I returned to playing cards on my computer in frustration, and finally attempted to listen to an audiobook called "Me to We". Turns out this book is about dedicating your life to helping others as a means to happiness. It was written by the young men who started Free the Children. They grew up in a family that consistently took action on any topic that interested them, and when the youngest brother read a story about child labour, he became motivated to help. This led eventually to his activism. From the start, listening to his story and how wonderful everything is for him, I feel extremely defensive and angry. It makes sense that he's this type of person, growing up the way he did, but he makes it seem like it's a no-brainer for everyone. Obviously they had no huge obstacles in their way, no mental illness, no poverty, no health problems. I had to turn it off. How can I be expected to dedicate myself to serving others when I'm so sick? I had just gotten over my own inner pressure to be some buddha-like saint. Now I feel it again as some accusation of selfishness from these authors. I know I am not in a position to help others, but there is still doubt. There is still the feeling that I should be doing something, that the work I have been doing towards my own recovery is not enough. This makes me feel guilty. Add to this now the guilt I feel for being angry about the implications in this book. Guilt is not a healthy emotion for me, it does nothing to help me, it does not motivate me, it only makes me want to crawl back into bed or find another way to disappear. It triggers all the beliefs I have been working on changing - beliefs about worthiness and deservedness. The voice of this author is joining the critical voice in my head that will always be saying "it's not enough" no matter what I do. I don't have the stamina to take care of myself properly, and it is pressuring me to pour myself into the service of others. Why don't these "others" feel this pressure? Why am I not identifying with them, since I clearly belong on their side in this hypothetical dyad? I am myself needy, a statistic. Maybe part of the reason I don't identify as this is that nobody treats me that way. Okay, there are people advocating for the disabled, there are Chronic Pain, Fibromyalgia etc. 'societies', and I am not involved. Why am I not involved? Because I don't have the energy. If I can't even advocate for myself, how can I possibly do anything for anyone else? Perhaps I feel guilty for not helping others because of my personality. Despite the selfishness I might display (necessitated by my poverty), I am always wanting to give to others. My first impulse is to grab things I think my friends might like, and then reality sets in and I have to put these things back. How much more of my nature is being stymied like this?

This morning I did some research on the internet regarding the increasing incidence of muscle twitching I'm experiencing. During the day, it is infrequent and minimal, to the point where I don't know if an observer could even detect it, but at night as I'm falling asleep, I'm twitching like crazy, and in increasingly bigger movements. The technical term for this is myoclonus, or possibly ballism(us) for the larger jerks. My legs and arms are flinging themselves around, and waking me up so i have to start the falling asleep process all over again. I can remember once a leg jerk scared me so much I had a full-body startle response. Sometimes there is a sensation of falling. My internet searching led me to the brain stem, and one article said that the area of the brain associated with the spasms is next to the area responsible for the startle response. I have had an exaggerated startle response for at least the past 4 years. Is it unreasonable to suspect that there may be a growing problem in my brain stem that is responsible for these two symptoms, and possibly others? Functions of the brain stem include autonomic regulation and movement. It is responsible for incoming messages from the spinal cord. Is it possible that messed up messages is causing my chronic pain? I am debating asking my doctor to refer me to a neurologist and requesting an MRI. I am afraid of being brushed off, of my doctor seeing this as a ridiculous idea and not worth the cost of an MRI. But I've never had my brain looked at, and it seems to me this is an oversight considering my plethora of symptoms and lack of any physical explanations. Maybe I am a hypochondriac, maybe this is a hunch, maybe I'm grasping at straws. But I would like to know definitively if there is or isn't something going on in my brain. What is there to lose? Don't I deserve every chance, however small, of overcoming my suffering and being able to live the best life I can? Truth is, I am not satisfied by my diagnosis. "Localized fibromyalgia" and/or myofascial pain syndrome are just descriptions, not diagnoses. There has to be some reason my back hurts in those specific spots. An article I read today said that it is reasonable that the brain stem could become damaged by accident or trauma. This all started when I was sick with Norwalk and throwing up so violently I could feel my lungs squeezed completely out of air. I've never been completely convinced that there isn't some other explanation other than fibro. Now that doubt is grasping onto this brain stem idea, for better or worse. I have achieved a lot of acceptance over the last year or so, about my emotional condtion as well as my physical capacities, but I still can't accept that I will spend the rest of my life with this, nor that there is nothing to be done besides pain management. I need an advocate. I need help, and belief and strength. Why do I have to fight so hard and push doctors so hard to get anywhere? I'm so frustrated, I need someone to take the reins and do these things for me, because I don't have enough energy to cope with the daily stressors of my life in even the most non-eventful periods. I'm sick of being sick. I'm sick of working so hard to do things that normal people take for granted, and I'm sick of all the obstacles created by my illness. Illness creates poverty,creates mountains of barricades, creates isolation and helplessness, creates more blockages, creates a life without meaning, joy, hope.

I take things minute by minute in order to avoid seeing the bigger pictures in life, because they look like that, what I've described above. I've learned how to celebrate small victories and enjoy tiny pleasures as if they are luxurious. I don't think about the future, I don't plan for tomorrow. I only ask of myself the things that MUST get done in order to maintain ODSP and housing. I don't make concrete plans, I say, "call me that day and we'll see where we're at". I don't make promises. I don't commit. I don't expect much from life, only that things don't get worse. I call long-term goals "dreams" because they probably won't happen. I pretend my poor memory and brain lapses are funny. I don't ask for sympathy or special treatment, even when I need it. I tell myself I chose this, that I want this way of life. Truth is, I don't know what I want anymore, and I don't know if I ever did.


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.