Today was my first day of physical therapy. It pretty much wore me out but hopefully it'll help some. He agreed that I have this Iliotibial band problem - although not sure what started it since I remember no injury or anything - but since I have all this pain in my knee - stretching and strengthening is in order.
Then I napped, studied, grocery shopped, hung out with the roommate a bit, and now am talking to my bf before bed...
Sorry for the short and sweet entry - but busy days leave little time.
Tuesday, September 20, 2011
Monday, September 19, 2011
It didn't come easy but that's just life
If I haven't mentioned, I am currently studying to take a comprehensive exam at the end of the week. I'm a graduate student - getting my doctorate in psychology - and they occasionally like to torture us with undue amounts of stress, and this is one of those times. I have studied for hours everyday for weeks. Maybe for that reason, I have recently really gotten into planning the next thing - the more exciting thing.
Unfortunately, I'm having trouble finding what it is that I'm looking forward to. I've had a countdown in my brain for this test since July but then...that's it. Then I go back to normal. I mean I've been talking about spending the hours after the test catching up on homework, dissertation, and cleaning. Oh and possibly breaking down a chicken for my cat's dinner. None of which sends chills of excitement down my spine.
Most of my class wants to go out and drink. Unfortunately, I can't drink. I try to rationalize and tell myself maybe I wouldn't want to anyway - but it still ends up the same way - another thing I can't do. So instead I try planning longer term events like the renaissance faire the next weekend or a haunted house. Both events which I would have to do with my boyfriend handy to push me around in my wheelchair (since I have neither the arm strength or energy to do so myself) and he doesn't really want to plan more than a day ahead - since his strategy for his finals has been to just concentrate on finals. (I know it's weird we're both stressed at the same time even though we have completely different school schedules and are at completely different schools)
So where does that leave me? I guess looking for some kind of independent activity. And that's a shame. I think one of the worst parts of this illness is the isolation. Feeling like I'm a hassle if I am with people and feeling so alone when I'm not with people. I guess I should be happy to do something alone. I am an Independent Woman after all. And sometimes I am. I just don't know if celebrating is one of those things. We'll see I guess. In the mean time, I suppose I ought to start researching activities in the area that are cheap, fun alone, and don't involve a lot of movement... Wish me luck.
*sigh* I'll probably just get back to studying...
Unfortunately, I'm having trouble finding what it is that I'm looking forward to. I've had a countdown in my brain for this test since July but then...that's it. Then I go back to normal. I mean I've been talking about spending the hours after the test catching up on homework, dissertation, and cleaning. Oh and possibly breaking down a chicken for my cat's dinner. None of which sends chills of excitement down my spine.
Most of my class wants to go out and drink. Unfortunately, I can't drink. I try to rationalize and tell myself maybe I wouldn't want to anyway - but it still ends up the same way - another thing I can't do. So instead I try planning longer term events like the renaissance faire the next weekend or a haunted house. Both events which I would have to do with my boyfriend handy to push me around in my wheelchair (since I have neither the arm strength or energy to do so myself) and he doesn't really want to plan more than a day ahead - since his strategy for his finals has been to just concentrate on finals. (I know it's weird we're both stressed at the same time even though we have completely different school schedules and are at completely different schools)
So where does that leave me? I guess looking for some kind of independent activity. And that's a shame. I think one of the worst parts of this illness is the isolation. Feeling like I'm a hassle if I am with people and feeling so alone when I'm not with people. I guess I should be happy to do something alone. I am an Independent Woman after all. And sometimes I am. I just don't know if celebrating is one of those things. We'll see I guess. In the mean time, I suppose I ought to start researching activities in the area that are cheap, fun alone, and don't involve a lot of movement... Wish me luck.
*sigh* I'll probably just get back to studying...
Sunday, September 18, 2011
Spend all your time waiting for that second chance
I'm starting a new journey with this blog. I am not sure where to start - just like I don't know how it could end. I've gone through a lot of changes in the past 6 months. I have become Disabled. It's still hard for me to even say. I am disabled. And it may be only for the next few months and it may be for forever. Since all I do know is my diagnosis I guess I'll start there.
I have Postural Orthostatic Tachycardia Syndrome. It's a type of autonomic dysfunction. And if you're still confused - you're not the only one. Few people understand the label. Few doctors even know about it. Basically it means when I stand my heart races, my blood pressure drops, and I occasionally faint. There is no cure, but there are treatments.
What does it mean to me? It means a change in everything I do, think, and am. It means I have to change my diet to eat 8,000-10,000 mg of salt a day and calories enough to sustain my weight. It means my stomach hurts randomly and I often feel nauseous and not able to eat - even if I avoid the spicy and acidic foods.It means I sit in the shower. It means I get up extra early to give my body time to adjust but I still don't feel well in the mornings. It means I take pills everyday - several times a day. It means I faint. It means I can't run, hike, bike, fly in a plane, or physically exert myself. It means I can't walk very far without needing to sit down due to feelings of dizzyness, sweating, and feeling as though I might pass out. It means I use a walker or wheelchair most of the time. It means I can't go apple picking this year. It means I can't be in the heat, should wear compression stalkings, and am supposed to not get "worked up" about anything - because emotionality could cause me to faint. It means I'm restricted. It means I can't drink, dance, or drive distances. It means I left my practicum early and haven't been able to get a new one. It means I'm different.
It is all of those things. But it's just so much more. So much I could never explain to anyone. Not to mention I didn't even list the emotional aspect. How can I explain how it feels to get stuck in the shower and need a roommate to help you out? Or how it feels to only be able to barely kiss your boyfriend for months? Or have to admit you are tired, you are sick, and you might not be able to do what you did before, what your classmates can do, and what your teachers expect you to do? It's not easy to have a hard time doing things that were so simple before. It's not easy not to be scared when you're body is flying off the handle.
I know I am not the worst case. I know many people have it harder than me. I know I shouldn't indulge in self-pity or wallowing in depression. I know I have a lot to be grateful for - my mind, my family, my friends, my cats, my life, and so much more. I know the list of things I have is longer than the list of things I don't have. And let's face it I was never much of an athlete anyway. But I admit my adjustment period has been long and hard. I have more bad days than good sometimes. So here I am - starting a new hobby. Finding a new way to cope and to have fun - without even leaving my room. Perfect. Like I said it's a journey but at least this way - it might not be so lonely.
Well that's all for now. This is just the beginning...
I have Postural Orthostatic Tachycardia Syndrome. It's a type of autonomic dysfunction. And if you're still confused - you're not the only one. Few people understand the label. Few doctors even know about it. Basically it means when I stand my heart races, my blood pressure drops, and I occasionally faint. There is no cure, but there are treatments.
What does it mean to me? It means a change in everything I do, think, and am. It means I have to change my diet to eat 8,000-10,000 mg of salt a day and calories enough to sustain my weight. It means my stomach hurts randomly and I often feel nauseous and not able to eat - even if I avoid the spicy and acidic foods.It means I sit in the shower. It means I get up extra early to give my body time to adjust but I still don't feel well in the mornings. It means I take pills everyday - several times a day. It means I faint. It means I can't run, hike, bike, fly in a plane, or physically exert myself. It means I can't walk very far without needing to sit down due to feelings of dizzyness, sweating, and feeling as though I might pass out. It means I use a walker or wheelchair most of the time. It means I can't go apple picking this year. It means I can't be in the heat, should wear compression stalkings, and am supposed to not get "worked up" about anything - because emotionality could cause me to faint. It means I'm restricted. It means I can't drink, dance, or drive distances. It means I left my practicum early and haven't been able to get a new one. It means I'm different.
It is all of those things. But it's just so much more. So much I could never explain to anyone. Not to mention I didn't even list the emotional aspect. How can I explain how it feels to get stuck in the shower and need a roommate to help you out? Or how it feels to only be able to barely kiss your boyfriend for months? Or have to admit you are tired, you are sick, and you might not be able to do what you did before, what your classmates can do, and what your teachers expect you to do? It's not easy to have a hard time doing things that were so simple before. It's not easy not to be scared when you're body is flying off the handle.
I know I am not the worst case. I know many people have it harder than me. I know I shouldn't indulge in self-pity or wallowing in depression. I know I have a lot to be grateful for - my mind, my family, my friends, my cats, my life, and so much more. I know the list of things I have is longer than the list of things I don't have. And let's face it I was never much of an athlete anyway. But I admit my adjustment period has been long and hard. I have more bad days than good sometimes. So here I am - starting a new hobby. Finding a new way to cope and to have fun - without even leaving my room. Perfect. Like I said it's a journey but at least this way - it might not be so lonely.
Well that's all for now. This is just the beginning...
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