Wednesday, September 29, 2010
I think that I just ignored these symptoms. I remember telling myself and believing that I was imagining them. I also didn't question them. I didn't realize I was getting numb until my physiotherapist asked me how I felt while he did certain things to me. I really listened to my body and realized and told him certain things were numb. Still, I didn't think that was abnormal. Now I know it is.
My physiotherapist told me I have thoracic outlet syndrome. Basically my spine curvature and fused discs are somehow affecting the nerves and circulation in my arms. Physio should help... Eventually, I hope. It seems to be making my back, legs and arms hurt more. Hurt a lot. I don't know what that's about! My spine and arms are often very sore and less mobile. Sometimes the pain keeps me up at night. Anyway, this is why I haven't been here. I have stalled some projects for this blog until I improve, at least a bit. Actually, another reason I haven't written here is because I didn't want to publish anything else before these projects.
Physiotherapy is helping me to talk about my symptoms. That's a huge part of physio, telling my PT how I've been feeling and how his maneuvers and exercises feel. It's funny because I started physio to improve my balance and reduce fatigue related to the Post-Viral and Dandy Walker syndromes, but my spine has actually taken centre stage. Also, I've learned that my spinal problems most certainly contribute to my pain and fatigue when I'm standing or walking. My physiotherapist has felt muscle spasms in my back and scar tissue around my spinal cord. Why did I let myself get to this point? I should have sought help for this years ago. After a scan of my spine seven years ago, I was diagnosed with spinal problems, but I never sought help for them. It's time to stop being brave and quiet ...
I'm wondering if maybe physio isn't quite helping because maybe something undiagnosed is going on. My physiotherapist was intrigued by this suggestion. You see, because of my Dandy Walker, I have some sort of nerve problem with my right eye. I don't have peripheral vision in the top right corner of it. If you drop a brick on the right side of me, I won't see it coming, but that's about the only problem with this eye thing. Maybe other nerves in my body are affected by my Dandy Walker. I looked it up and Dandy Walker can cause nerve problems. That would also explain other seemingly harmless nuisances I've been getting, some for years, like muscle twitches, swelling and skin pain over my entire body when I have a cold or something (doc told me it's viral neuropathy). Who knows. I guess I need to see my neurologist and get some tests done. I also want advice on medicinal pain control.
After I published my last entry, I didn't want my next one to be about my health, but I wanted to explain my absence. My upcoming projects will be fun, I promise. I just have to take care of myself first.
Saturday, September 18, 2010
I just slathered my neck and shoulders with Myoflex, an over-the-counter muscle relaxant cream my doctor recommended to me months ago. The disc problem affects the muscles. I had the urge to write about my frustration and pain. My last session with the PT was the one I wrote about in my last entry. He was doing traction of my lower back which my exaggerated upper spine curvature and awkward gait had messed up. It felt good. A release. But it only continued to feel good for about ten minutes after the session when I felt looser and lighter as I walked home. It hasn't helped with the fatigue I get in my legs which is mostly related to Dandy Walker Syndrome anyway. And I'm stiffer. The pressure in my lower back from my awkward posture and gait has gotten worse too.
I'm kind of sick of hearing that it's normal or probably normally. How can this be NORMAL?! More importantly, how am I supposed to tell the difference between symptoms of injury or aggravation of condition (seems probable given that my left arm has randomly gone numb and sore more than once -- including now) and evidence that the physiotherapy is helping? What is good pain and what is bad pain? AH! I feel like I don't know my body, like I'm supposed to ignore what would otherwise be warning signs of worsening problems.
Besides this frustration, I just feel jaded, like, "Oh boy, what have I done now?" -- You know, like I said in my last entry, I often blame myself for my symptoms and assume I've done something wrong. I know it's silly, but this is just me.
My physiotherapist is a wonderful guy and I don't mean to suggest that he has done something incorrectly. Joking aside, he is very gentle and he always asks me how I'm feeling and how his actions feel. These typically aren't characteristics of a sadist. Maybe this is normal. He has a lot to work on me. I should be more patient. He's disturbing problems in my body I've had for a long time. Of course that disruption should be unpleasant, right? I'm trying not to think of this as punishment for not helping myself earlier, if that would have even resulted in less pain after sessions.
Wow, where did this get so serious?! Ah! It's strange how thought evolves this way, eh? I would write more, but I think I should rest my arms and watch a Disney movie. Now who wants to give me a massage? Just keep in mind that I am not a masochist and I will not pay you.
Thursday, September 16, 2010
A few minutes later I stood up on the deck and then sat on a comfortable chair. The Danes lied down beside me. This is true loyalty. We listened to the children in the school yard chatting and screaming. Recess, of course. Such chaotic noise is indicative of playtime that will end imminently. I noticed this because the children were louder than they are when I usually look after them during the lunch hour.
The noise doesn't seem to bother the dogs. I guess they're just used to it. I kind of got used to it too. Maybe that's because it became a white noise or maybe it's because I just enjoyed listening to kids having fun and trying to make out what they were saying and playing. It's also nostalgia. It reminds me of when I was a kid and went to that school. The yard is so big and so you can hear some kids louder than others. That depth of sound evokes childhood memories for me. Isn't that interesting?
I used to get irritated because I felt I didn't have good fodder for my writing since I'm off sick and not doing much. But there is so much. I have so many opinions on current events and entertainment. There is always so much to observe and absorb, like my animal friends. I love sharing with you what I have learned about myself and my career goals through writing this. Writing gives me agency. It means I still have a voice and I can still be creative even when I don't feel well. I don't need work or school to have those things. My life can be rich without them until school starts up again.
And there is also richness in physiotherapy. My PT has discovered issues with my lower back, hips and legs like pain and stiffness. He said that the fused discs in my neck and the curvature by my shoulders has partly caused or at least contributed to these issues. I feel bad about not seeking help for my spine earlier. I just felt that my issues weren't significant. I always just assumed the pain wasn't abnormal and that everyone gets pains; I was just being a wimp. And I blamed myself for my symptoms, assuming I was just sleeping awkwardly and things like that. It's stupid. My suffering is real and always has been. I need to stop minimizing my experiences. I need to come out and say "I am in pain" or "I really don't feel well" more often.
This realization has been the pinnacle of this blog. It has helped me feel less ashamed or silly about having written so much about my health problems here, but has also driven me to find more to write about to satisfy my creative and social needs. I have features on artists coming up, a film review, maybe a guest post or two. I'm so excited!
Please note that the film RED, which features actor Robert Nolan I interviewed for this piece, is now called RED: WEREWOLF HUNTERS and will air on the SyFy channel on a new date: Oct 30th at 9pm/8 pm Central and later that night at 1:00 am.
Saturday, September 11, 2010
I feel so cozy in my house, but I like rain even when I'm outside. I like to see the drops bounce off things and splash. I love feeling the drops hit my coat. I don't understand why so many people hate rain, why rain is so symbolic of sadness or sad events. Now, wind and overcast skies make me feel sad, or an overcast sky. But rain kind of feels like a release, like urinating or crying. It's necessary and beautiful.
It reminds me that flowers and grass are being nourished and people are huddled inside. It gives us reasons to be calm and quiet and reflect on things, unlike the obligations of happiness and productivity that come on sunny days. Ah, I just love rain. I might not have such a romantic perspective if it rained all of the time.
And I need to be reflective tonight. I had a great time last night having a drink downtown with an old teacher/director from high school. It was fun to reminisce and talk about how we'd grown and changed -- and remark on the changes we saw in each other. Then I went to my sister's where she and our old, dear mutual friend were waiting for me to go out for drinks. We laughed and behaved like idiots as we always do, but also had honest, thoughtful conversation. I think it's so important to have both of those things in a friendship. Then I spent the night at my sister's! Aw it was nice. The next morning -- ahem, afternoon -- I went out and bought us some donuts! Yummy!
When I came home I walked and ran with my dog. Then I watched television. Then I went for a long brisk walk on my own. Man, has it felt good to be active and busy. Tomorrow I'm going for tea with another dear friend of mine. I think this weekend makes up for the previous two weekends I canceled plans because I didn't feel well.
I'm determined to have weekends like this more often. I'm going to go to physiotherapy regularly, eat well (today I allowed myself a junk food day) and get as much sleep as I need. These won't fix me of course, but they will help me endure more. I have a habit of staying up all night. I am so nocturnal. But hey, it's just after 11 and I feel ready for sleep already. Please pat me on the back. I'm not just going to go to bed now to listen to the rain.
Monday, September 6, 2010
Thanks for Covering My Ass
by Ashley Ashbee
My friends call them "granny panties", these torn, flower printed, cotton panties I'm wearing. I call them undies – short for underwear, which, to me, implies that because they are UNDER my clothes, I shouldn’t care about what they look like. And neither should anyone else. My mom gave these undies and some Lego sets to me for my twelfth birthday. My sister got a training bra and Puff Daddy cd, which were apparently the cool things to get for your twelfth birthday. But I didn't care. I didn't have boobs and I hated Puff Daddy.
For me, the rite of passage to my pre-teen years was to graduate to the bags of these undies from the "big kids" section at Zellers, undies my mom wouldn't buy earlier because she said they wouldn't fit. But then I turned twelve. So long Snoopy underwear. Even when it occurred to me that these undies weren’t as cool as I had previously thought, I continued to wear them because they were just so damn comfortable.
I actually wore a pair of these undies to my elementary school graduation, even though my dress had one dangerously high cut slit on each leg. I folded the elastic of each leg of the panties and hoped that it would never show. Unfortunately, one picture from that night reveals pink elastic. I hoped that nobody noticed my underwear, but I didn’t think that anyone would have expected me to wear a thong anyways.
But as I found out when I entered high school, a lot of girls my age wore thongs, hiking them up, and pulling down their low-cut jeans. I, on the other hand, didn’t want anything to do with any kind of underwear you’d find in the Women’s section. So I folded my underwear down and pulled my bulky sweatpants up, a half-assed effort to conceal my ill-fitting, flower-printed, cotton secret. I sometimes think I should have purposely made my undies visible – a sort of protest against the pressure to grow up and show off your ass already. A signal to other girls that it’s okay be comfortable and not care about how firm your ass looks. If my butt could thank me for the loose protection and proper air circulation that only these undies I’m wearing can offer, I’m sure it would. No rashes or infections for me. Just the occasional elastic imprint around my belly.
The years went on and I stopped caring about whether people knew I still wore children’s underwear. It no longer mattered to me if some of the cotton flowers peeked out of my pants. Now, in university, students would probably make fun of anyone who hikes up a thong for the whole world to see. Lately, I have noticed quite a few cotton flowers peeking out of the pants of other students who enjoy complete ass coverage.
Most of the elastic in these undies I’m wearing is gone and there are holes everywhere in the stretched-out fabric. Maybe this is a sign that I have disregarded fashion for long enough. Loose and saggy after nine years of wear, these undies have finally started to fall apart. I know it's time to move on to tightier, skimpier undies, but I just can't seem to throw my favourite "granny panties" away. I refuse to sacrifice the extreme comfort that only my ripped undies can offer in exchange for a seamless bottom and a major wedgie.
Note: I have since purchased new underwear, but I can't say if it's more flattering.
Friday, September 3, 2010
I'm thinking maybe of going outside to do it. My dad recently put some new sod down, so a rock falling on it would make an awesome thud. Or maybe my mom will allow me to sacrifice one of her dishes? There is actually a light bulb beside the rock. I think it's a sign.
I feel angry right now. I should have been out with my friends tonight, but they and my sister were going out together to a bar that I don't care to travel to alone by public transit. I didn't want to pay for a cab home either, as my friends have all moved out and none of them live near me anymore. Like I would take the bus home by myself at night. Not that they would let me. It's okay. I don't feel great anyway. Just leg wobbles and leg fatigue. I could have used some laughs, though. My friends are hilarious.
I just don't know what to do with myself. I really don't. I want to be out, but I don't. I don't even know what to write in here. I was thinking an opinion piece, but I don't feel passionate about anything now. I don't even know what to write. I feel lost and useless. That's why I'm angry.
I'm feeling pressure to volunteer or get a job -- something that would get me out of the house more -- but damnit, I don't want to commit to anything. I really don't and I have reason not to. I keep getting crummy days, or at least days that are partly crummy. I canceled on friends two weekends in a row and canceled two physio appointments in a row. It was painful to cancel all of these. The guilt is terrible. Getting a part-time job or volunteering would mean having to work when I didn't feel well, and possibly feeling worse because of being active more often. Not to mention more cancellations.
And it's not like I know when I'm going to feel like garbage, so I can't exactly schedule around it. I'm frustrated. School doesn't start for four months. I can tolerate doing nothing until then. It's the pressure that I can't tolerate. Feeling like I'm letting my family and friends down. Feeling guilty about saying I don't feel well, like I'm such a broken record.
I do chores and I pet sit and I write. I go for walks. I go to physio. I am reasonably productive for someone who is off sick, right? Still, some days like today I feel bored and boring. I generally feel much better after a long rest, so I admit there is sometimes little incentive to actually do things. Sometimes it feels like activity is punishment. When I'm out doing things, I always wonder how I will pay for it later. And I usually pay. So there is fear in committing to things or wondering about what I should commit to in terms of work or volunteering. It triggers terrible memories of being in post-grad PR school this year and not fulfilling my parts of group work. This fear is completely realistic. That's what scares me most of all.
I really didn't want to write an entry about all this. I really didn't. My last post, the article on Toronto actor Robert Nolan, is part of what I want to do for a living. I love that I keep getting practice at it. I just interviewed a friend for an article I'm going to post up here to promote his band's upcoming album release. It went well, I had fun and I'm excited. These are the kinds of things I want my blog to be mainly about and I think they will be once I get over this Post-Viral Syndrome, or at least when I get back into school. I hope the Dandy Walker eases when the Post Viral Syndrome does, but I'm very prepared and conscious that it will still be a part of my life regardless, at least as much a part as it was before I got sick when I really just ignored it for the most part. I need to learn to work with it better. I have to get comfortable telling people what I need and not get back into denial about what I will need.
I like that I have a readership. People will actually see my feature-style articles. They'll see me grow too. I think of this blog as an online portfolio. I didn't want to be a downer yet again, but I need to write. It's my way of figuring things out and exercising my creativity while making at least some kind of an audience while I wait to get back into professional writing work. At the same time, it's connecting me to people who support me and people who feel supported by me.
I can only write about what I know. This is what I know right now. I know it well. I'm filling my online portfolio, which I will share with potential employers, yet I'm filling it with evidence that I'm not interested or feeling capable of work right now and haven't been for several months. It seems counter productive, no?