Tuesday, November 25, 2008

43 Things: Social anxiety not such a worry.

Over the past six months, the frequency of me thinking about social anxiety has slowed down to a stop. Really, I don’t even consider myself to have that diagnosis anymore. I still have some problems, but I would say they are on the normal side of the spectrum. I went to a party last month, the guests were mostly people I knew – friends of a friend and her husband. I’d had intermittent contact with them for years, but never really got to know or like them. So, it wasn’t a room full of strangers, but somewhat a room full of people who were part of two groups of friends, and a few other guests who knew each other. So, I’m not good at mingling, I have nothing to say, don’t know what to ask. I had one real conversation, instigated by one of those people I’d known slightly for years. The rest of the time I tried to busy myself by taking pictures, going for cigarettes, fiddling with the video game system or the stereo. Finally, my meds petered out and I had to rest until the next dose kicked in. I found myself lying on the couch watching the goings-on, and though I felt like a weirdo, I was able to accept the fact that this was necessary. By the end of the night I had probably exchanged at least a few words with 75% of the guests, and hadn’t felt like crying or that I needed to go home. This I call a success. This is the only party I hadn’t been able to avoid for probably 10 years, but there have been a few other occasions, such as weddings, that required mingling or something, and I can’t say I had a blast at any of them. And that is fine for me, as long as I can avoid them in the future.

On the upside, I’m much better at making phone calls, asking strangers the time (or whatever), making small talk with random people. I don’t walk down the street feeling everybody’s distainful eyes on me. If I do feel some distain, I think, “what’s their problem?” I am much more able to just go about my business and i don’t think about social situations with apprehension (unless it is a social gathering of many people, not family).

This is only one aspect of my fears, but it was a huge obstacle, a problem that effected everything in my life, so it is a relief to be over it. Of course, I still think it is solely the Effexor, and I will never stop taking it.

43 Things: Sleep Better - Is it possible?

I have had sleeping difficulties my whole life, or as long as I can remember. I’ve always had trouble falling asleep, as well as being plagued by intense, emotionally-negative dreams. I would not characterize them as nightmares exactly, because they are not usually about being chased or physically hurt or frightened. The majority of my dreams centre around themes of anxiety, such as being lost, late, or falling behind. I have talked about the dreams with counsellors, therapists, psychologists…and while I recognize what they are about, I can’t seem to get any relief from them.

In 2003, my body started ‘breaking down’, eventually leading to a diagnosis of fibromyalgia. The majority of people with this diagnosis have a sleep abnormality called alpha-EEG-anomaly, which is characterized by brief, awake-like brain patterns during periods of sleep. What this means is that we don’t get enough quality deep sleep, the restorative stage in which your body repairs the minor damages it receives from normal day to day living. The implication is that the body starts to accumulate more and more damage over time, leading to the condition. The first thing people with fibromyalgia need is enough good quality sleep to start the repair process. We are told to exercise, but this is only if we are getting proper sleep first. Otherwise, we are just damaging our bodies further.

So you can see my problem. I can’t make any progress healing my body because I never get enough of the right kind of sleep.

Recently I have used medications to help me fall asleep and stay asleep. They work for these purposes, however they do nothing to make sure I get the right kind of sleep, i.e. deep sleep. In fact there is evidence that the medications I am on interfere with deep sleep. I am in a Catch-22, because without the meds, I toss and turn for hours at night, and don’t sleep as long as I need to even just to feel “not exhausted” the next day. I know the ‘sleep hygiene’ protocol, but find it difficult to comply. I eat close to bedtime – if I don’t, I have more difficulty falling asleep and/or wake up early, starving. I also smoke, and I have been trying to quit…but that is another story, another goal perhaps. They say you should go to bed and wake up at the same time every day, but again, this is difficult. If I am not tired enough to go to sleep, I toss and turn for hours, and if I have not had enough sleep, waking up to an alarm is literally excruciating. My sleeping patterns are completely erratic. I may sleep 16 ti 20 hours if I haven’t had enough the previous 3-7 days. This throws the day/night cycle out of whack. I have always been a night owl too, so going to bed early is difficult for me, since I often have just started to feel good in the evening and want to pursue activities.

Recently, I have been able to use 3mg of melatonin, sublingual, to knock me out when I know I’m going to be tossing. Originally I was using Sleep MD, which contains melatonin as well as other natural ingredients. It may be I need those other ingredients as well, but plain melatonin is much cheaper and does the knock out job I need most. Some nights I don’t need it to fall asleep quickly, and this is a relief. I think I have finally taught myself how to fall asleep by taking the Sleep MD every night for a few months. Previous to this, I can’t think of even once when I fell asleep in less than 30 minutes.

A new complication has arisen in the past few weeks. Almost everybody occasionally has slight twitches as they fall asleep, but mine have become increasingly large and disturbing, and seem to occur much more frequently than they used to. Last night as I was in the process of falling asleep, my leg jerked a number of times, waking me up, so I had to start over. Then my entire arm flung itself out. I have had jerks that caused my entire body to startle violently. I have also noticed an increase in the morning of me talking out loud or gesturing with my hands while dreaming. This causes me to wake up at least to the point where I consciously notice what I’ve been doing, but I may be doing it all night without waking up.

This may have sounded like a whining testimony, but since I’m using this site and goal for my own purposes, I felt I needed to clarify where I was at. Now that I’ve written down everything I’m dealing with in regards to sleep (except for pain issues), I’m overwhelmed. I’ve been to a sleep clinic before, but it was a decidedly terrible experience. Not only was being hooked up to the machines utterly humiliating, but I am positive they got my results mixed with someone else’s but wouldn’t admit it. They told me I’d had at least 6.5 hours of sleep, but I remembered seeing the digital clock read somewhere after 1 a.m. and I hadn’t slept yet, and they woke me up at 7 a.m. That is less than 6 hours. In the end all they did was prescribe me clonazepam, which I’d had experience with before, and new it was addictive and only prescribed on a temporary basis. Needless to say I do not want to go back to the sleep clinic, but it may have become necessary considering all my problems. What else can I do? I don’t want my whole life to revolve around sleeping, but if I make it my priority (and if I want to do anything about my fibromyalgia, it has to be), that is exactly what will happen. I already spend 12 hours a night in bed, how much more of my life is this going to take away from me? I am on disability, but yes I actually do have better things to do than sleep or perform activities that should help me sleep.

If anyone reads this and feels like commenting, please do not respond with anything negative. I don’t think I could deal with that right now. Thanks.

43 Things: Eating Disorder - Update

I’ve signed up for two group courses, both of which I failed to make it to. I’m just no good in the mornings. However, my contact at the clinic keeps calling to find out if I want to try again, so I’ve signed up for the next group in January, in the afternoon. In the meantime, I have been bingeing less often, and extremely rarely do I eat large quantities when I do. Some of this has to do with my financial problems and not being able to afford it, some of it has to do with the progress I’ve made emotionally since working with my therapist. We rarely talk about my eating, but working through my emotional issues helps indirectly, because I most often binge when I have strong unpleasant emotions such as frustration and anger. Lately I don’t feel these as often, or as strongly, and on some occasions when I have felt them I’ve responded by not wanting to eat instead. I believe that with more therapy my eating will continue to improve, however, it can’t hurt to go to additional groups focussed specifically on eating. I am hoping to do the Skills group, which will give me ways to deal with my emotions besides eating. It may not be in the afternoon, however, so in that case I am planning to do the Symptom Interruption group, in which you make specific goals about eating and try to achieve them. Either group may be helpful.

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.