Yesterday, I dreamed that I was an actor on the set of a movie. We were working on a scene in which we had to run or something. It was the last scene shot for the movie. We kept having to run up and down stairs for this scene and I kept hoping and waiting for the director to yell, "That's a wrap!" Finally, he did and I was so relieved. We went to a party in the same church where I took ballet from 1989-1997, only the church was much bigger than I remembered and all of the windows were made of glass. It took us ages to walk to the entrance because the building was so long!
Then we got inside for our wrap party. I don't remember much of this, only that I wanted to stay, but I really had to pee. I went to the basement to find a washroom, but all I could find was the studio I used to take lessons in, which is weird because the studio was upstairs in real life and the basement looked nothing like it did in real life. Anyway, while I was looking for a washroom, I bumped into two dancers in full costume and make up. I asked them if they were having a recital and they told me it was really a rehearsal. So I followed them to an auditorium in the church (the auditorium where I had my recitals was actually at my high school) to watch the performances.
It turned out that it wasn't just a dance recital -- there were musical performances too. The one I saw was really good. It featured kids of varying ages and adults. In the last section of the song, a bunch of little kids stepped up to a higher stage in the front and sang. They were adorable. A lady beside me started waving and laughing. She poked me, pointed to the cutest girl and said, "She's my daughter." It was sweet. Then I left to go pee, finally, and that's all I remember.
In this dream, I played an actor or extra. I've been interested in getting back into acting for some time (I played Puck and Bottom in two high school productions of A Midsummer Night's Dream), but as it did in the dream, it would exhaust me and I don't love it nearly enough to make that kind of commitment. I would always feel desperate to get the scene over with, as I was in my dream.
I feel like my growing desperation to hear "That's a wrap" kind of represents my attitudes about a lot of things because of my health problems and also my boredom with my life. This representation probably symbolizes my excitement about finishing this semester of school. I'm sick of having to ask for extensions and missing classes. The work itself has become tiresome because there's always a looming deadline for a project that isn't something I want to do as a career. It's helpful to learn, though. You never know when I might need whatever skill the assignments are preparing me for.
I went to a party last night. My night wasn't rowdy, but I was standing and walking a lot of the time, so I'm really tired even though I got nine hours of sleep. I woke up less than half an hour ago. It's almost 3 p.m. now. Don't get me wrong, parties are exhausting to everyone, I think, but before I got sick with that virus last summer, I had much better endurance than I do now. I could wake feel rested after six hours of sleep. For months now, I never really feel rested, so I'm glad that when school is over I can rest whenever and for however long as I need to.
I will go to Hawaii in five days! We will not playing tourists this trip. It's more of a relax-on-the-beach vacation. I can't imagine anything more restful! It is supposed to be hot, but not hotter than a typical summer in Toronto, where I live. For a while I was concerned about how I would handle the heat, but now I'm excited. I'm so used to being cold all of the time!
My mom gave me a generous amount of spending money for Hawaii. She wants me to buy pants and shoes, both of which I have difficulty finding that fit me because I'm so petite! Sometimes I feel very determined to gain weight. Like yesterday, I heated up a plate of chicken Parmesan with spaghetti. I cut the breast into a piece I felt I would be able to eat and didn't give myself too many noodles. I was convinced I would be able to eat it! No dice... Ha ha. I ate a lot of it, though. I just wasn't very hungry. I realize that in instances like these, I'm most driven to eat by my desire to gain weight. I'm 5'2 and I weigh less than 100 pounds (the most I've ever weighed is about 107) and I think I look kind of gross. My forearms are just skin and bones. Seriously.
For years, people have expressed concern about my weight. I've always been thin. Mostly been a light eater. Very few have asked me if I'm anorexic or something -- but still, "few" is too much. I think my thin frame makes me look weak and kind of sick. I don't want to look that way! I want a full figure because I think it looks healthy to have a bit of fat all over the body. I'm so glad that I don't look sick and I want to look even better. Lately I've been blow-drying my hair after every shower, wearing a bra whenever I go out, usually wearing jewellery, hats and my nice jackets and coats. I'm trying to compensate for feeling awful by looking great.
I've also become a bit vain. Ha ha. I often find myself looking in the mirror. Just yesterday I was playing with my hair and staring at my reflection in the window of the subway. Don't worry, I didn't miss my stop or anything. I was wearing good shoes too, mind you they're falling apart now. I enjoyed hearing the heels click on the floor. They were clicking quickly because I was walking quickly (Yay! Energy!) -- a sound you hear with business people, dressed up on their way to somewhere important. Dressing up makes me feel important.
Sunday, April 25, 2010
Tuesday, April 20, 2010
The nerve!
Thanks to that classy anonymous person who yesterday wrote this in a comment on my "Telephone" post:
“you're a f_____ idiot. a stupid f_____ crybaby.... I've been reading your blog for some time now, and all you do if (is) bitch and moan. you're a f_____ psycho hypochondriac."
The commenter also noted that I had drank alcohol at my event (it was actually after). I didn't write about the drinking post-event in this blog, so whoever wrote this comment must have been at my event. Someone I know. The only people I knew there were a couple of my friends, a few instructors and a bunch of my classmates. Or maybe it was someone who was told that I had been drinking alcohol. Again, it would have to be someone I know. I want to know who it is!
Whoever you are, I want you to know that you are ignorant and cruel. Let me explain some things that you should have already figured out since you have been following my blog despite hating it (and me, it seems):
1. I am not always sick and I'm seldom so sick that I can't function. I feel pretty decent a lot of the time -- it's actually very seldom that I am sick for an entire day. Thursday was a great body day and I made the most of it with my friends.
2. The theme of this blog is health issues. This is why I constantly talk about how crappy I feel on here. I'm pretty sure I'm not imagining my symptoms. Perhaps you would have balance and fatigue issues too if you were missing part of your cerebellum, had fused discs in your neck, a curvature in your back... I could go on, but I don't want to repeat myself again. I won't mention the Post-Viral Syndrome either because it isn't really detectable through tests: Anonymous Commenter may question the validity of my claim to this illness. Why is it so inconceivable to you, faithful reader, that I am really suffering and not imagining or faking it?
3. I have had health issues for my entire life -- some serious, most requiring treatment and monitoring. The effects of these and my physical and learning disabilities on my childhood were significant and I still carry the pain with me. I use this blog to help me deal with that.
4. The invisibility of my disabilities and health issues complicates matters even further: I tend to get paranoid either that people won't believe that I have issues or that they will try to enforce provisions that I don't think I want or need. It also makes it difficult for me to know when to disclose my problems. I discuss these issues here. Many other bloggers face similar issues and I want to connect with them.
One of my main concerns about writing a blog about my health issues was that that my readers (including friends and family) would think I was exaggerating my issues, just looking for pity or making excuses for not living my life fully. I was concerned that no one would want to read it, that I was somehow arrogant for writing this blog because it means I think I'm important enough to be read.
And now I have proof that at least one person out there thinks I don't have reason to share my issues and vent about my experiences -- that I'm just a hysterical woman.
My health issues are only one part of my life, but as I said, this is a health themed blog. My outlet. I thought this was my "safe place" as one person commented on my blog. Now I feel unsafe, like I have to stop writing about what I'm going through. When I read that terribly hurtful comment I thought,
Wow. How sick could I have been if I was well enough to drink with my friends? Maybe I should not defer my second semester. I can do it and I need to prove to people that I'm not giving up.
It's unfortunate that one comment can intensify my fears and insecurities about what I write in this blog and how I choose to live my life. I write so much in here about the guilt I feel about claiming illness and disability. I feel accountable to my readers, like I have to prove that I'm genuinely suffering. Seriously, I imagined myself tracking down this commenter and showing him my medical records. Why? Because I feel that medical evidence proves my suffering. It seems my narrative about my experience isn't convincing to him or her.
After I read the comment I felt this intense need to write entries about Pounce and Maui, when I'm there. I want to prove to skeptics that I think about much more than my health. That shouldn't really be a mystery, I guess, since I'm a full time Post-Graduate Corporate Communications student. Of course I will still write about Pounce and Maui, but it will likely be within the context of my health: Pounce came into my life early in the first few months of my current illness, helping me feel useful through my care for him; Maui will mean therapy and rest, but the airplane rides will likely make me feel sick as they usual do. I just can't pretend that my health doesn't play a massive role in my life. It governs most decisions I make. Surely that is worth documenting, no?
I'm not trying to prove to this commenter that I am suffering and have reasons to have a blog about my health. If he or she has indeed read this blog for some time, my suffering should be evident. There is nothing I can say here that will change the commenter's mind. My purpose in writing this was to explain the emotional impact of such a comment. I'm writing this entry more for the people who care, not the ones who don't. But please, if you have any response, share it. Just use fewer expletives, so I can post the comment without offending my readers. Oh, and provide proof of what you mean as well. I prefer arguments that have some meat to them. I want this to be an open community, but only if you have respectful, intelligent things to say.
Thank goodness for comment moderation!
P.S. Today my feet and ankles were so swollen I had trouble getting my shoes on and off. It is painful and fatiguing. I left school early to do school work I didn't do yesterday because I was sick and I was glad that I would also get to take my shoes off and put my feet up. Don't worry Anonymous Commenter, it really does hurt and weaken me. And they really are swollen. Wanna see? You can give me a foot massage. You owe it to me after being such a jerk.
“you're a f_____ idiot. a stupid f_____ crybaby.... I've been reading your blog for some time now, and all you do if (is) bitch and moan. you're a f_____ psycho hypochondriac."
The commenter also noted that I had drank alcohol at my event (it was actually after). I didn't write about the drinking post-event in this blog, so whoever wrote this comment must have been at my event. Someone I know. The only people I knew there were a couple of my friends, a few instructors and a bunch of my classmates. Or maybe it was someone who was told that I had been drinking alcohol. Again, it would have to be someone I know. I want to know who it is!
Whoever you are, I want you to know that you are ignorant and cruel. Let me explain some things that you should have already figured out since you have been following my blog despite hating it (and me, it seems):
1. I am not always sick and I'm seldom so sick that I can't function. I feel pretty decent a lot of the time -- it's actually very seldom that I am sick for an entire day. Thursday was a great body day and I made the most of it with my friends.
2. The theme of this blog is health issues. This is why I constantly talk about how crappy I feel on here. I'm pretty sure I'm not imagining my symptoms. Perhaps you would have balance and fatigue issues too if you were missing part of your cerebellum, had fused discs in your neck, a curvature in your back... I could go on, but I don't want to repeat myself again. I won't mention the Post-Viral Syndrome either because it isn't really detectable through tests: Anonymous Commenter may question the validity of my claim to this illness. Why is it so inconceivable to you, faithful reader, that I am really suffering and not imagining or faking it?
3. I have had health issues for my entire life -- some serious, most requiring treatment and monitoring. The effects of these and my physical and learning disabilities on my childhood were significant and I still carry the pain with me. I use this blog to help me deal with that.
4. The invisibility of my disabilities and health issues complicates matters even further: I tend to get paranoid either that people won't believe that I have issues or that they will try to enforce provisions that I don't think I want or need. It also makes it difficult for me to know when to disclose my problems. I discuss these issues here. Many other bloggers face similar issues and I want to connect with them.
One of my main concerns about writing a blog about my health issues was that that my readers (including friends and family) would think I was exaggerating my issues, just looking for pity or making excuses for not living my life fully. I was concerned that no one would want to read it, that I was somehow arrogant for writing this blog because it means I think I'm important enough to be read.
And now I have proof that at least one person out there thinks I don't have reason to share my issues and vent about my experiences -- that I'm just a hysterical woman.
My health issues are only one part of my life, but as I said, this is a health themed blog. My outlet. I thought this was my "safe place" as one person commented on my blog. Now I feel unsafe, like I have to stop writing about what I'm going through. When I read that terribly hurtful comment I thought,
Wow. How sick could I have been if I was well enough to drink with my friends? Maybe I should not defer my second semester. I can do it and I need to prove to people that I'm not giving up.
It's unfortunate that one comment can intensify my fears and insecurities about what I write in this blog and how I choose to live my life. I write so much in here about the guilt I feel about claiming illness and disability. I feel accountable to my readers, like I have to prove that I'm genuinely suffering. Seriously, I imagined myself tracking down this commenter and showing him my medical records. Why? Because I feel that medical evidence proves my suffering. It seems my narrative about my experience isn't convincing to him or her.
After I read the comment I felt this intense need to write entries about Pounce and Maui, when I'm there. I want to prove to skeptics that I think about much more than my health. That shouldn't really be a mystery, I guess, since I'm a full time Post-Graduate Corporate Communications student. Of course I will still write about Pounce and Maui, but it will likely be within the context of my health: Pounce came into my life early in the first few months of my current illness, helping me feel useful through my care for him; Maui will mean therapy and rest, but the airplane rides will likely make me feel sick as they usual do. I just can't pretend that my health doesn't play a massive role in my life. It governs most decisions I make. Surely that is worth documenting, no?
I'm not trying to prove to this commenter that I am suffering and have reasons to have a blog about my health. If he or she has indeed read this blog for some time, my suffering should be evident. There is nothing I can say here that will change the commenter's mind. My purpose in writing this was to explain the emotional impact of such a comment. I'm writing this entry more for the people who care, not the ones who don't. But please, if you have any response, share it. Just use fewer expletives, so I can post the comment without offending my readers. Oh, and provide proof of what you mean as well. I prefer arguments that have some meat to them. I want this to be an open community, but only if you have respectful, intelligent things to say.
Thank goodness for comment moderation!
P.S. Today my feet and ankles were so swollen I had trouble getting my shoes on and off. It is painful and fatiguing. I left school early to do school work I didn't do yesterday because I was sick and I was glad that I would also get to take my shoes off and put my feet up. Don't worry Anonymous Commenter, it really does hurt and weaken me. And they really are swollen. Wanna see? You can give me a foot massage. You owe it to me after being such a jerk.
Sunday, April 18, 2010
Some Weekend!
Boy, do I feel discouraged.
Today is horrible. Not only do I still have the pain in my neck, back, legs, abdomen, constipation, drunk vision and swelling and pressure in feet and ankles, but when I got up today Mr. Ticker was going crazy! It was weird. Not a problem at all in bed when I woke up, but as soon as I stood up (slowly because of the fatigue and pain), he pounded and raced like crazy. Well, it wasn't that fast -- I counted 130 beats per minute. (Is that mildly, moderately or really fast in your eyes, dear reader? Let me know. I have lost perspective.) It was just particularly significant because it was beating so hard and that seldom happens to me when I'm sick with this. I felt so unwell it was tricky to get down the stairs! I was shaky, fatigued and a bit light headed. After I sat down for at least about half an hour, he went back to it's slow self, but ever since he slowed down, Mr. Ticker has been pausing and flip-flopping. My chest feels heavy and I'm so, so tired. Fatigued too. I feel dazed, like I'm in that phase between sleeping and waking. It seems ludicrous that I'm not in bed right now -- let alone that I have homework to do.
This is silly: I've only been up for a couple of hours, but now I am going to lie down again for a couple of hours! The swelling won't go down unless I elevate my legs. Then I really have to get up to do my homework: I have textbook questions to answer for a group project and another assignment I have to do. It's all easy enough and won't take me long to do, but I just can't concentrate when I feel this way. I'm so excited to finish the semester so I can rest whenever I need to without any guilt or repercussions. I mean, I get extensions for stuff -- my instructors are great that way -- but then the workload accumulates. That's bad news because I already have enough work to do at any given time.
At least my event is over... I'm so glad I had a good body day for it!
My mom is playing Hawaii music downstairs and it's sooo nice. We're going to a condo in Maui on April 30 for 10 days! I can't think of better therapy... Then when i get home from Maui my days will remain filled with books, writing, music, the puppy and little else. Oh, the puppy is ours now -- did I tell you guys? His name is Pounce.
Today is horrible. Not only do I still have the pain in my neck, back, legs, abdomen, constipation, drunk vision and swelling and pressure in feet and ankles, but when I got up today Mr. Ticker was going crazy! It was weird. Not a problem at all in bed when I woke up, but as soon as I stood up (slowly because of the fatigue and pain), he pounded and raced like crazy. Well, it wasn't that fast -- I counted 130 beats per minute. (Is that mildly, moderately or really fast in your eyes, dear reader? Let me know. I have lost perspective.) It was just particularly significant because it was beating so hard and that seldom happens to me when I'm sick with this. I felt so unwell it was tricky to get down the stairs! I was shaky, fatigued and a bit light headed. After I sat down for at least about half an hour, he went back to it's slow self, but ever since he slowed down, Mr. Ticker has been pausing and flip-flopping. My chest feels heavy and I'm so, so tired. Fatigued too. I feel dazed, like I'm in that phase between sleeping and waking. It seems ludicrous that I'm not in bed right now -- let alone that I have homework to do.
This is silly: I've only been up for a couple of hours, but now I am going to lie down again for a couple of hours! The swelling won't go down unless I elevate my legs. Then I really have to get up to do my homework: I have textbook questions to answer for a group project and another assignment I have to do. It's all easy enough and won't take me long to do, but I just can't concentrate when I feel this way. I'm so excited to finish the semester so I can rest whenever I need to without any guilt or repercussions. I mean, I get extensions for stuff -- my instructors are great that way -- but then the workload accumulates. That's bad news because I already have enough work to do at any given time.
At least my event is over... I'm so glad I had a good body day for it!
My mom is playing Hawaii music downstairs and it's sooo nice. We're going to a condo in Maui on April 30 for 10 days! I can't think of better therapy... Then when i get home from Maui my days will remain filled with books, writing, music, the puppy and little else. Oh, the puppy is ours now -- did I tell you guys? His name is Pounce.
Telephone
**Warning: There is swearing in this post**
Telemarketer: Congratulations! You've won an unlimited supply of pain! Brought to you by our sponsors: Illness and Activity!
Just for being our loyal customer at Health Problems R Us, we're offering you worse-than-usual neck and back pain. All you have to do is sit, stand or walk! As a bonus, you'll receive swelling and pressure in your legs and feet that will making standing painful, fatiguing and uncomfortable.
But wait! There's more! You'll be entered in a contest. The grand prize is several days without a bowel movement. You won't even have to pack your appetite because you'll be be too preoccupied with your nausea and abdominal pain.
Thank you for choosing Health Problems R Us. For more information on our services, press 1. (I press 1)
Operator: Thank you for calling Health Problems R Us. All of our customer service representatives are busy at this time. Please stay on the line and another symptom will be with you shortly.
(John Mellencamp's "Hurts So Good" plays over the phone)
Customer Service Representative: Hi, Welcome to Health Problems R Us. How can I help you?
Me: Hi, I just got a message saying I'm your customer and I won a bunch of symptoms, but I'm not your customer and I didn't enter a contest.
CSR: Okay, let me check your file. Name please?
Me: My name is Ashley Ashbee, A-s-h-l-e-y A-s-h-b-e-e but I don't have a file --
CSR: Oh, it says here your friend Asshole Body entered you. Wow, she has purchased a lot of services for you!
Ashley: I don't know this Asshole Body. I don't even like symptoms.
CSR: But you're so lucky to have Asshole Body. She has purchased you symptoms without life threatening consequences! That's a fine gift.
Ashley: No, it really isn't. Asshole Body just doesn't understand what it's like to get these prizes all the time. I just... I don't want these services anymore. Can you remove them, please?
CSR: Oh no, I'm sorry. Miss Body has signed you up for life. This can't be undone.
Ashley: What?!
CSR: Yes. We've customized the symptoms for your specific illnesses. We can't give this to anyone else. This service is unique for every person. You are lucky.
Ashley: So what am I supposed to do? I don't want it!
CSR: We can offer you a keychain that says: "Fucked for life"?
Ashley: Sure, why not.
Telemarketer: Congratulations! You've won an unlimited supply of pain! Brought to you by our sponsors: Illness and Activity!
Just for being our loyal customer at Health Problems R Us, we're offering you worse-than-usual neck and back pain. All you have to do is sit, stand or walk! As a bonus, you'll receive swelling and pressure in your legs and feet that will making standing painful, fatiguing and uncomfortable.
But wait! There's more! You'll be entered in a contest. The grand prize is several days without a bowel movement. You won't even have to pack your appetite because you'll be be too preoccupied with your nausea and abdominal pain.
Thank you for choosing Health Problems R Us. For more information on our services, press 1. (I press 1)
Operator: Thank you for calling Health Problems R Us. All of our customer service representatives are busy at this time. Please stay on the line and another symptom will be with you shortly.
(John Mellencamp's "Hurts So Good" plays over the phone)
Customer Service Representative: Hi, Welcome to Health Problems R Us. How can I help you?
Me: Hi, I just got a message saying I'm your customer and I won a bunch of symptoms, but I'm not your customer and I didn't enter a contest.
CSR: Okay, let me check your file. Name please?
Me: My name is Ashley Ashbee, A-s-h-l-e-y A-s-h-b-e-e but I don't have a file --
CSR: Oh, it says here your friend Asshole Body entered you. Wow, she has purchased a lot of services for you!
Ashley: I don't know this Asshole Body. I don't even like symptoms.
CSR: But you're so lucky to have Asshole Body. She has purchased you symptoms without life threatening consequences! That's a fine gift.
Ashley: No, it really isn't. Asshole Body just doesn't understand what it's like to get these prizes all the time. I just... I don't want these services anymore. Can you remove them, please?
CSR: Oh no, I'm sorry. Miss Body has signed you up for life. This can't be undone.
Ashley: What?!
CSR: Yes. We've customized the symptoms for your specific illnesses. We can't give this to anyone else. This service is unique for every person. You are lucky.
Ashley: So what am I supposed to do? I don't want it!
CSR: We can offer you a keychain that says: "Fucked for life"?
Ashley: Sure, why not.
Wednesday, April 14, 2010
It's here
AAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHH my Heart and Stroke Foundation fundraiser is tomorrow and I'm getting nervous again! I feel more excited than nervous, actually. This must be what it feels like to be an expectant mother at the ninth month of her pregnancy.
Finally, my group and I will get to see the results of our hard work, but now that I think of it, I don't know if I consider this event my baby. What exactly am I birthing? I didn't do as much work on it as I wanted to: I missed several group meetings throughout the semester because I was sick; I didn't visit all of the potential sponsors I had letters for because I was sick; oh, and I will be mostly doing jobs like operating the raffle and cover tables because these tasks allow me to sit. You might say that I am a teensy bit frustrated with myself, and of course feeling guilty too. BUT, I DID learn a lot about how to approach sponsors and raise awareness. I also learned to disclose my health issues and possible absences, so that I can accommodate myself by doing tasks that I can manage on my own when I'm up to it. Disclosure also helps others accommodate me and may prevent them from thinking I'm just skipping classes or making excuses.
I am only really nervous about tomorrow because I anticipate people getting frustrated with me. You see, It often takes me a while to understand and remember auditory instructions or auditory information that comes in a sequence because of my Auditory Processing Disorder. External noise will make it even more difficult. My coordination issues also may present a problem as I am not usually quick with my hands when it comes to motor skills I will use to handle change. Oh, and I also have difficulty with math -- sometimes even very simple math in my head, so I'm super glad I will have a trusty calculator. I am perfectly able to do all of these things; I just can't usually do them quickly or without help, but I will have help tomorrow.
I'm afraid of a long line up as I fumble with a calculator and change -- a task made even more difficult with shaky, sweaty, nervous hands. Will people become impatient? Will I give anyone incorrect change? Will I get confused and not put half of each prize ticket stub in the bins? Will I say something awkward to any of our guests? Will guests ask me questions I don't know how to answer? How am I going to impress my team members, other classmates, instructors, family and friends?
I think when the event starts, I will probably become more confident and enjoy talking to guests and seeing the money pile up in the cash box. For now, What if? is the big question in my head. Oh self-esteem, you have evaded me again! I should get some sleep now. I will perform optimally with a lot of sleep!
Finally, my group and I will get to see the results of our hard work, but now that I think of it, I don't know if I consider this event my baby. What exactly am I birthing? I didn't do as much work on it as I wanted to: I missed several group meetings throughout the semester because I was sick; I didn't visit all of the potential sponsors I had letters for because I was sick; oh, and I will be mostly doing jobs like operating the raffle and cover tables because these tasks allow me to sit. You might say that I am a teensy bit frustrated with myself, and of course feeling guilty too. BUT, I DID learn a lot about how to approach sponsors and raise awareness. I also learned to disclose my health issues and possible absences, so that I can accommodate myself by doing tasks that I can manage on my own when I'm up to it. Disclosure also helps others accommodate me and may prevent them from thinking I'm just skipping classes or making excuses.
I am only really nervous about tomorrow because I anticipate people getting frustrated with me. You see, It often takes me a while to understand and remember auditory instructions or auditory information that comes in a sequence because of my Auditory Processing Disorder. External noise will make it even more difficult. My coordination issues also may present a problem as I am not usually quick with my hands when it comes to motor skills I will use to handle change. Oh, and I also have difficulty with math -- sometimes even very simple math in my head, so I'm super glad I will have a trusty calculator. I am perfectly able to do all of these things; I just can't usually do them quickly or without help, but I will have help tomorrow.
I'm afraid of a long line up as I fumble with a calculator and change -- a task made even more difficult with shaky, sweaty, nervous hands. Will people become impatient? Will I give anyone incorrect change? Will I get confused and not put half of each prize ticket stub in the bins? Will I say something awkward to any of our guests? Will guests ask me questions I don't know how to answer? How am I going to impress my team members, other classmates, instructors, family and friends?
I think when the event starts, I will probably become more confident and enjoy talking to guests and seeing the money pile up in the cash box. For now, What if? is the big question in my head. Oh self-esteem, you have evaded me again! I should get some sleep now. I will perform optimally with a lot of sleep!
Sunday, April 11, 2010
Florence! Florence! Florence!
Tonight I saw Florence and the Machine at the Kool Haus in Toronto. Florence was amazing! She has such a powerful voice. Complementing her were a harpist, TWO drummers, a keyboardist and a bass player... I think that was it. Full accompaniment, eh? There was a great light show too. Some of my favourite parts of the show were the intimate moments with just her voice. The crowd actually shut up occasionally! She played almost every song from her album "Lungs," one of my favourite albums ever.
Boy, were they a rowdy bunch. A lot of shoving and obnoxious chatter. At least where I was standing anyway. And of course, loads of spectators raised their cameras in the air to take pictures of Florence, obstructing my view. It was also a little too snug in the crowd for my comfort. I hated having to crane my neck to see Florence. I wasn't hot at all, though.
This concert was at club that has standing-room only, so to ensure we got a good spot, my friend and I got in line before the doors opened. We stood in line, then stood at our spot in the venue, from 7:30 to 11:30. Wow! I don't know what compelled me to buy the tickets in February and then subject myself to all of that standing, which is usually very difficult for me. For two months, I hoped that I would have a good day on the concert. I did! I felt very strong all day, able to jog up and down the stairs and to the bus stop, then stand for hours! My balance was decent too. I didn't tip over with all of the shoving at the show. And I don't think I was in any more pain than anyone else. I didn't have the balance to stand on my tippy-toes.
I tend to feel horrible after a day of feeling great and being active, so I'm dreading tomorrow -- especially with all of the homework I have to do! I've already started having issues. After the concert I was having trouble walking straight. I kept tipping and walking into my friend. And I was pretty slow and unsteady on the stairs. Shortly after I got home, I noticed my heart was going too fast and I was getting the abdominal pain. I've been getting it a lot lately. I saw my internist Friday and she has ordered blood work to rule out some things. She is on the Dandy Walker route, but doesn't know much about the condition at all -- says neurosurgeon is the way to go. She also thinks I may have Chronic Fatigue Syndrome, which can last for years, unfortunately. WHAT?!
Of course, it's hard for me to conceive that I may have CFS with days as good as this one. By a good day, I don't mean a symptom-free day; I just mean that the symptoms are minimal or that some symptoms are absent. And I feel guilty for using a good day to go to a concert instead of do homework. What was I thinking booking a concert, anyway? I have many really nasty days. If I hadn't had such a good day, the shoving could have made me fall or the long standing period could have given me terrible pain.
I planned to offer my ticket to my friend to go with someone else if if today was a bad day. Back-up plans help me cope with my health problems. Because they make me less accountable if I have to back out of something, I feel less nervous about potentially having to back out. I'm glad I went to Florence. It was so much fun to dance around, which really helps me embrace a good body day. This was a test. I'm glad I pushed myself. It's great to know what I'm capable of when I feel pretty well.
Anyway, I put off sleep because my ears were ringing, but now I think I will be able to sleep. Oh dear, I just realized I have to clean my bathroom, change my bedsheets and do more laundry tomorrow on top of the homework... Bleh! This is going to be such a crazy week. I'm getting nervous about my Heart and Stroke Fundraiser!
Boy, were they a rowdy bunch. A lot of shoving and obnoxious chatter. At least where I was standing anyway. And of course, loads of spectators raised their cameras in the air to take pictures of Florence, obstructing my view. It was also a little too snug in the crowd for my comfort. I hated having to crane my neck to see Florence. I wasn't hot at all, though.
This concert was at club that has standing-room only, so to ensure we got a good spot, my friend and I got in line before the doors opened. We stood in line, then stood at our spot in the venue, from 7:30 to 11:30. Wow! I don't know what compelled me to buy the tickets in February and then subject myself to all of that standing, which is usually very difficult for me. For two months, I hoped that I would have a good day on the concert. I did! I felt very strong all day, able to jog up and down the stairs and to the bus stop, then stand for hours! My balance was decent too. I didn't tip over with all of the shoving at the show. And I don't think I was in any more pain than anyone else. I didn't have the balance to stand on my tippy-toes.
I tend to feel horrible after a day of feeling great and being active, so I'm dreading tomorrow -- especially with all of the homework I have to do! I've already started having issues. After the concert I was having trouble walking straight. I kept tipping and walking into my friend. And I was pretty slow and unsteady on the stairs. Shortly after I got home, I noticed my heart was going too fast and I was getting the abdominal pain. I've been getting it a lot lately. I saw my internist Friday and she has ordered blood work to rule out some things. She is on the Dandy Walker route, but doesn't know much about the condition at all -- says neurosurgeon is the way to go. She also thinks I may have Chronic Fatigue Syndrome, which can last for years, unfortunately. WHAT?!
Of course, it's hard for me to conceive that I may have CFS with days as good as this one. By a good day, I don't mean a symptom-free day; I just mean that the symptoms are minimal or that some symptoms are absent. And I feel guilty for using a good day to go to a concert instead of do homework. What was I thinking booking a concert, anyway? I have many really nasty days. If I hadn't had such a good day, the shoving could have made me fall or the long standing period could have given me terrible pain.
I planned to offer my ticket to my friend to go with someone else if if today was a bad day. Back-up plans help me cope with my health problems. Because they make me less accountable if I have to back out of something, I feel less nervous about potentially having to back out. I'm glad I went to Florence. It was so much fun to dance around, which really helps me embrace a good body day. This was a test. I'm glad I pushed myself. It's great to know what I'm capable of when I feel pretty well.
Anyway, I put off sleep because my ears were ringing, but now I think I will be able to sleep. Oh dear, I just realized I have to clean my bathroom, change my bedsheets and do more laundry tomorrow on top of the homework... Bleh! This is going to be such a crazy week. I'm getting nervous about my Heart and Stroke Fundraiser!
Wednesday, April 7, 2010
Let's be Realistic
This morning I woke up feeling like I hadn't slept at all. Normal occurrence for me.
I never really "woke up" today. Not normal.
Today's dazed, exhausted, nauseous, fatigued experience has reminded me has reminded me that my recent decision was a wise one: I am deferring my second semester until next year. Probably January, but maybe May 2011. I didn't even consider this option until after I went to Disability services at school last week to figure out what I would need to do to officially inform my professors of my disabling issues and request accommodations. Then a couple of days ago I was trying to figure out how I would pay for the second semester's tuition, all of which is due on the first day of classes. I cannot access the second half of my disability grant from the government in time for the second semester tuition deadline.
Then I realized that this is the first year of having this school payment grant for students with permanent disabilities that I felt comfortable accepting it. I felt I deserved it. Needed it. The difference this time is that accessing funds isn't my biggest hurdle. Physically getting to and from school and finding the energy to do homework -- those are my biggest hurdles. I know now that I cannot meet them yet. Rest will help me more than money will.
I realized that there were no accommodations my professors could give me that would ease my symptoms and help me enjoy my studies. Not with the way I've been feeling.
I won't be going into school tomorrow (technically today, but my nap earlier threw my sleep schedule off). I don't expect to feel any better then, plus I need to save my energy to work on a paper. I'm really looking forward to sleeping for as long as I need to without feeling like I'm letting myself or other students down. It will be nice to avoid draining myself of energy so frequently.
I'm disappointed that I won't be able to finish school, start working and move out this year. I was really excited about that, but now I realize that these would be very unrealistic, unhealthy decisions. I feel foolish for thinking I would be ready, but I think I was just anxious to gain independence after staying home sick for seven months until January and then seeing my sister move from her apartment with her boyfriend to her own place by the beach. I think I should avoid looking so far into the future. I can still enjoy my life, of course. After all, I am a homebody! I don't mind being at home, playing with the puppy, listening to music, reading and writing. These are my favourite things to do. It won't be a full life, though. I thought school would give me a full life, even if I remained sick throughout my time there. Nope. That didn't give me a full life either because I was too sick to enjoy it.
I'm not really upset about my decision. I'm actually happy with it. This semester will end in late April and I wish it was sooner. I feel at peace about everything because I know I did the right thing. I'm proud of myself for facing facts and admitting that I just can't do this right now. I kind of feel like I've given up, especially because it's not like I wasn't doing well in school Most of my grades were really good. And I'm physically capable of going to class and doing the work. It could be worse, Ashley. You're lucky you are well enough to be able to go to school. It's that brutal "buck up/be grateful" mentality I keep drilling into myself. Guilt.
My parents completely support my decision to stay home. I feel bad for assuming they wouldn't. I was nervous to tell them. They want me to feel better. My mom had the good sense to book me an appointment with my internist. Of all of my doctors, i am confident that she is the one who will make me feel that I've made the right decision, that I really am suffering. I want her to rule out other potential health problems -- by "rule out," I mean that I don't expect there to be anything new. I also want her to refer me to physical and occupational therapy and suggest different treatment options for my heart.
I've made a lot of changes these past few days. I feel like I'm going backward.
I never really "woke up" today. Not normal.
Today's dazed, exhausted, nauseous, fatigued experience has reminded me has reminded me that my recent decision was a wise one: I am deferring my second semester until next year. Probably January, but maybe May 2011. I didn't even consider this option until after I went to Disability services at school last week to figure out what I would need to do to officially inform my professors of my disabling issues and request accommodations. Then a couple of days ago I was trying to figure out how I would pay for the second semester's tuition, all of which is due on the first day of classes. I cannot access the second half of my disability grant from the government in time for the second semester tuition deadline.
Then I realized that this is the first year of having this school payment grant for students with permanent disabilities that I felt comfortable accepting it. I felt I deserved it. Needed it. The difference this time is that accessing funds isn't my biggest hurdle. Physically getting to and from school and finding the energy to do homework -- those are my biggest hurdles. I know now that I cannot meet them yet. Rest will help me more than money will.
I realized that there were no accommodations my professors could give me that would ease my symptoms and help me enjoy my studies. Not with the way I've been feeling.
I won't be going into school tomorrow (technically today, but my nap earlier threw my sleep schedule off). I don't expect to feel any better then, plus I need to save my energy to work on a paper. I'm really looking forward to sleeping for as long as I need to without feeling like I'm letting myself or other students down. It will be nice to avoid draining myself of energy so frequently.
I'm disappointed that I won't be able to finish school, start working and move out this year. I was really excited about that, but now I realize that these would be very unrealistic, unhealthy decisions. I feel foolish for thinking I would be ready, but I think I was just anxious to gain independence after staying home sick for seven months until January and then seeing my sister move from her apartment with her boyfriend to her own place by the beach. I think I should avoid looking so far into the future. I can still enjoy my life, of course. After all, I am a homebody! I don't mind being at home, playing with the puppy, listening to music, reading and writing. These are my favourite things to do. It won't be a full life, though. I thought school would give me a full life, even if I remained sick throughout my time there. Nope. That didn't give me a full life either because I was too sick to enjoy it.
I'm not really upset about my decision. I'm actually happy with it. This semester will end in late April and I wish it was sooner. I feel at peace about everything because I know I did the right thing. I'm proud of myself for facing facts and admitting that I just can't do this right now. I kind of feel like I've given up, especially because it's not like I wasn't doing well in school Most of my grades were really good. And I'm physically capable of going to class and doing the work. It could be worse, Ashley. You're lucky you are well enough to be able to go to school. It's that brutal "buck up/be grateful" mentality I keep drilling into myself. Guilt.
My parents completely support my decision to stay home. I feel bad for assuming they wouldn't. I was nervous to tell them. They want me to feel better. My mom had the good sense to book me an appointment with my internist. Of all of my doctors, i am confident that she is the one who will make me feel that I've made the right decision, that I really am suffering. I want her to rule out other potential health problems -- by "rule out," I mean that I don't expect there to be anything new. I also want her to refer me to physical and occupational therapy and suggest different treatment options for my heart.
I've made a lot of changes these past few days. I feel like I'm going backward.
Saturday, April 3, 2010
Overlap
I decided to hand that assignment in late after realizing that working hard on it would make worsen the fatigue and tiredness. I also knew that I generally don't do as well (or well at all) on assignments I write when I'm sick. I was planning to get a doctor's note, but then decided to see if disability services at my school, which I am registered with, could give me some sort of note for an extension. Before the semester started, I had only brought documentation on my Dandy Walker Syndrome to register myself with disability services because DWS was the only condition I had that I considered a disability, despite having many other issues.
I felt that the DWS was good enough as a reason to get an extension because of my fatigue and balance issues, but I knew that other conditions I have could be contributing to these symptoms as well. Of course, there are many other symptoms disabling me that DWS doesn't explain. I had a lot of trouble explaining this overlap to the disability consultant, especially when I realized he thought the other conditions I told him about were also related to the DWS. Aaah! It's so hard to figure out what condition is causing whatever symptom(s) I'm experiencing and so I imagine it would be hard to deliver medical proof to instructors or employers about what may explain my absences or make it difficult for me to perform optimally. Also, it could be that a bunch of conditions and factors are working at once to make me feel awful.
Here is some of the overlap:
Fatigue - Post-Viral Syndrome, Dandy Walker Syndrome, Inappropriate Sinus Tachycardia, allergies, asthma (seldom)
Pain in neck, back and legs - flat feet, swollen feet (unknown cause), fused spinal discs/curved spine, Dandy Walker Syndrome, Post-Viral Syndrome
Pain in abdomen - Post-Viral Syndrome, Post-Nasal Drip, constipation from heart medication, or another undiagnosed problem?
Nausea - Inappropriate Sinus Tachycardia and the meds used to treat it, Post-Viral Syndrome, Post Nasal Drip
Drunk/Dazed feeling: lazy eye, Dandy Walker Syndrome (balance), something else?
Because of this overlap, I often don't REALLY know what is making me feel awful, what may have triggered or worsened it or what I can do to improve the symptoms or prevent them. So how do I help myself? How do I ask for help when I don't know what I need help WITH or how I should be accommodated? It's so frustrating! There is even more overlap I'm sure, but I haven't pursued medical investigation or treatment. I'm in a weird place because I want answers about why so many of my pre-existing symptoms got worse with the post-viral syndrome, but I'm not willing to see doctors and get more tests. I'm just so jaded I don't expect anything to show up, even though I feel Post-Viral Syndrome was a hasty diagnosis. These situations explain why I'm pretty sure I will feel even more discouraged:
When I told my gp about my episodes of feet swelling, he said it "doesn't make sense" that the swelling isn't constant. He said it was probably just humidity. He also told me that six-months was too long to have post-viral syndrome (VERY wrong) and that I just needed to start exercising vigorously.
About a year ago, when my cardiologist found that my average heart rate had settled with the medication changes, he said the episodes I described to him were anxiety and depression and to "distract yourself" from the symptoms
Then -- here's a real charmer: my neurologist told me a physical therapist would just ask me, "Why are you here?" because I can walk heel-to-toe -- the extent of his examination, might I add. He didn't take my narrative seriously because "you haven't fallen." Yes, I haven't fallen. Yet.
I don't want to look like a hypochondriac, but I'm PRETTY sure I have significant health problems. At least the number of problems and their chronic, disabling nature is serious, right doctors? It's funny that even with medical proof of my problems, I still have to prove that I'm suffering. Some doctors have just said to me, "I don't know." Others have assumed that because they don't know, it isn't serious or even worthy of investigation.
So yeah... because of these humiliating and frustrating situations (and others), I haven't seen a doctor about my problems in many weeks. Next week I have an appointment with my gp to ask him to fill out the disability form using his own knowledge about my health and medical letters from other doctors. This is scary to me. I'm taking steps to declare my conditions, which until now I only considered a nuisance, disabling. What if my gp and other doctors disagree that I should receive accommodation for my various conditions? What if disclosing all of my problems, symptoms and accommodation recommendations to instructors and colleagues makes them think I'm less capable of doing things, or that I'm lazy and making excuses?
And there there is my Auditory Processing Disorder...
I felt that the DWS was good enough as a reason to get an extension because of my fatigue and balance issues, but I knew that other conditions I have could be contributing to these symptoms as well. Of course, there are many other symptoms disabling me that DWS doesn't explain. I had a lot of trouble explaining this overlap to the disability consultant, especially when I realized he thought the other conditions I told him about were also related to the DWS. Aaah! It's so hard to figure out what condition is causing whatever symptom(s) I'm experiencing and so I imagine it would be hard to deliver medical proof to instructors or employers about what may explain my absences or make it difficult for me to perform optimally. Also, it could be that a bunch of conditions and factors are working at once to make me feel awful.
Here is some of the overlap:
Fatigue - Post-Viral Syndrome, Dandy Walker Syndrome, Inappropriate Sinus Tachycardia, allergies, asthma (seldom)
Pain in neck, back and legs - flat feet, swollen feet (unknown cause), fused spinal discs/curved spine, Dandy Walker Syndrome, Post-Viral Syndrome
Pain in abdomen - Post-Viral Syndrome, Post-Nasal Drip, constipation from heart medication, or another undiagnosed problem?
Nausea - Inappropriate Sinus Tachycardia and the meds used to treat it, Post-Viral Syndrome, Post Nasal Drip
Drunk/Dazed feeling: lazy eye, Dandy Walker Syndrome (balance), something else?
Because of this overlap, I often don't REALLY know what is making me feel awful, what may have triggered or worsened it or what I can do to improve the symptoms or prevent them. So how do I help myself? How do I ask for help when I don't know what I need help WITH or how I should be accommodated? It's so frustrating! There is even more overlap I'm sure, but I haven't pursued medical investigation or treatment. I'm in a weird place because I want answers about why so many of my pre-existing symptoms got worse with the post-viral syndrome, but I'm not willing to see doctors and get more tests. I'm just so jaded I don't expect anything to show up, even though I feel Post-Viral Syndrome was a hasty diagnosis. These situations explain why I'm pretty sure I will feel even more discouraged:
When I told my gp about my episodes of feet swelling, he said it "doesn't make sense" that the swelling isn't constant. He said it was probably just humidity. He also told me that six-months was too long to have post-viral syndrome (VERY wrong) and that I just needed to start exercising vigorously.
About a year ago, when my cardiologist found that my average heart rate had settled with the medication changes, he said the episodes I described to him were anxiety and depression and to "distract yourself" from the symptoms
Then -- here's a real charmer: my neurologist told me a physical therapist would just ask me, "Why are you here?" because I can walk heel-to-toe -- the extent of his examination, might I add. He didn't take my narrative seriously because "you haven't fallen." Yes, I haven't fallen. Yet.
I don't want to look like a hypochondriac, but I'm PRETTY sure I have significant health problems. At least the number of problems and their chronic, disabling nature is serious, right doctors? It's funny that even with medical proof of my problems, I still have to prove that I'm suffering. Some doctors have just said to me, "I don't know." Others have assumed that because they don't know, it isn't serious or even worthy of investigation.
So yeah... because of these humiliating and frustrating situations (and others), I haven't seen a doctor about my problems in many weeks. Next week I have an appointment with my gp to ask him to fill out the disability form using his own knowledge about my health and medical letters from other doctors. This is scary to me. I'm taking steps to declare my conditions, which until now I only considered a nuisance, disabling. What if my gp and other doctors disagree that I should receive accommodation for my various conditions? What if disclosing all of my problems, symptoms and accommodation recommendations to instructors and colleagues makes them think I'm less capable of doing things, or that I'm lazy and making excuses?
And there there is my Auditory Processing Disorder...
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