1. The illness I live with is: Chiari I Malformation, Postural Orthostatic Tachycardia Syndrome (Autonomic Dysfunction), Ehlers Danlos Syndrome, Cranio-cervical instability/Functional cranial settling
2. I was diagnosed with it in the year: Chiari in 2002, the rest in 2003
3. But I had symptoms since: 1998-ish
4. The biggest adjustment I’ve had to make is: giving up on the idea of having a career; getting used to a drastic reduction in ALL activity
5. Most people assume: that if I look like everyone else, I must feel like everyone else. That if I put a smile on my face, then I’m doing just fine.
6. The hardest part about mornings is: Facing another day. Knowing it will feel like 10,000 days. Feeling like I weigh 10,000 pounds. Feeling worse than I did the night before. Feeling more tired than I did the night before. Feeling like my life currently holds such little meaning—why should I force my body out of bed just to watch TV all day?
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My laptop…connection to civilization
9. The hardest part about nights are: Being all alone with my pain and my thoughts, and unable to sleep, over and over and over again.
10. Each day I take __34__ pills & vitamins (Plus fish oil and any as needed meds, like pain meds). (No comments, please)
11. Regarding alternative treatments I: generally stick to what a doctor recommends, with a couple recent exceptions. I believe in empirically-supported medicine. I love massage therapy!!!
12. If I had to choose between an invisible illness or visible I would choose: I think I’d prefer a visible illness, because then people would understand immediately that my smile does not come easily. It is a gift for them.
13. Regarding working and career: When I thought I was getting better, around 2007, I had a piano studio of 24 students. But it was really a ruse. I was living off of stimulants and narcotics. I couldn’t keep it up. My body started protesting with narcoleptic episodes. As soon as I slowed down on the meds, my ability to work slowed down, too. I’m now down to about 3 half-hour lessons/week. And even that is a challenge. I don’t even know if this is the career I want to stay with. It’s just the only career I thought I could pull off as I was going through college. I have no idea if or when I’ll be able to work more. And I have no idea what job I would have chosen without limitations, or if I'll ever find a different one.
14. People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain. Also, the severity of everyday fatigue.
15. The hardest thing to accept about my new reality has been: My lack of independence and loss of social life. They do go together.
16. Something I never thought I could do with my illness that I did was: Graduate from a 4-year college. At one point, I also got into really good physical shape. I hope to do that again when my body allows.
17. The commercials about my illness: n/a
18. Something I really miss doing since I was diagnosed is: Gymnastics, Exercising, Singing, Performing on stage in some way.
19. It was really hard to have to give up: Driving…I need to drive again for my sanity. I feel so confined.
20. A new hobby I have taken up since my diagnosis is: I started a support group, but then became physically incapable of running it. I read a lot of books, but that’s not new. I watch endless hours of tv, but I’m not proud of it. I guess I’ve learned to relax. I always used to be so busy and stressed in high school and younger.
21. If I could have one day of feeling normal again I would: spend it doing all of the things my fiancé has always wanted to do with his partner, but can’t with me. He deserves that day of normalcy even more than I do. So it would be his choice. I think it would involve skipping and jumping and running (for me).
22. My illness has taught me: how to relax. How to listen to my body. How to revise my expectations for myself in life. How to accept myself as I am now.
23. Want to know a secret? One thing people say that gets under my skin is: if you just stay positive 24/7, you’ll be better off. That’s not necessarily true! Okay? We need to live in the real world, and we need to accept our circumstances as they are in order to cope with them. Not just pretend that everything is fine and put on a happy face. No one should have to pretend to be optimistic 100% of the time!
24. But I love it when people: Care, Listen, Learn about my messed up brain. Especially doctors.
25. My favorite motto, scripture, quote that gets me through tough times is: “A journey of a thousand miles begins with a single step.” –Lao Tzu. Because what can we really do, other than persevere.
26. When someone is diagnosed I’d like to tell them: Allow yourself to grieve, time and time again, over everything you lose to this illness. It’s the only way you will learn to accept your new self.
27. Something that has surprised me about living with an illness is: How ignorant the entire medical community is about all of these illnesses. The number of times and ways they have let me down.
28. The nicest thing someone did for me when I wasn’t feeling well was: Lay next to me, without touching me, when my skin was too sensitive to be touched. Just because my skin hurts, doesn’t mean I don’t want to be held, just that I can’t be.
29. I’m involved with Invisible Illness Week because: n/a
30. The fact that you read this list makes me feel: Heard.
Saturday, May 15, 2010
Friday, May 14, 2010
A Day in the Life (with Chiari/POTS/EDS/Cranial Settling/Cranio-Cervical Instability)
I wake up around noon (please don’t express jealously--that's just mean). I immediately feel the aches and pains of the morning and the headache of the day, but it’s usually too soon to know how bad the day will be. At this point, I can only tell if it will be an easy or a difficult wake-up. Some mornings, I wake up feeling like I’ve actually slept. Most mornings, though, I wake up feeling the peak of lethargy. Either way, I drag my heavy body out of bed and head downstairs.
First, I eat a bowl of Grape Nuts on the couch. This is followed by my morning pills. I may or may not have a dramatic and prolonged choking spell on a pill, or even my water, for that matter. At this point, I am unable to move until lunch time. I force myself to eat lunch exactly two hours after I finish eating breakfast. The routine is helpful in remembering to eat, because hunger often never comes. Quite often, before lunch comes, I have a spell of reduced consciousness. My body goes limp, and I am unable to respond to much. If anyone is around and realizes that I am not just asleep, they may come and force a salt pill and water in my mouth. That will resolve the spell within ten minutes, most days. If no one is around or notices, I may remain semi-conscious for an extended period of time, unable to do anything. For lunch, my mom or my fiancé helps me to get apple slices and Triscuits. Then, I take my lunch pills. At this point, I am still unable to get off the couch for several more hours.
On a good day, around 5:00, I will be able to go get washed up and dressed. I don't have the energy for a shower every day, or to even get dressed every day. But most days, I do get to eat dinner and take more pills. Since I can’t drive, there is nothing to do after dinner. I don’t have the energy anyway. I’d like to go for a walk around the block for my Physical Therapy, but currently, I’m not allowed to, because I’m so likely to have a drop attack. (I would enjoy getting out of the house, but even a walk around the block causes a considerable increase in pain, even on a good day. But this isn't allowed right now.) So, I generally just sit around and watch t.v. until 9:00, because that’s the only time of day that I may have company. At 9:00, I may try a few exercises (planks, toe raises, etc.). I’m always too tired, but I’ll force myself somedays. It is pure torture to exercise. If you see me exercise, you'll wonder what is wrong with me. But that's just the look of pain on my face from the exercise.
Miraculously, the best time of day for me, and many POTS patients, is late at night, which is why I’m typing this at 2:00 a.m. Unfortunately, this is another lonely time of night. Lately, the loneliness leads to a lot of tears, but that's not too unusual. It also ends up being a very unproductive time. But it’s hard to go to sleep too early, when it’s the best you’ve felt all day.
I've skipped over exciting things, like drop attacks, where I collapse straight to the floor in the middle of whatever I'm doing, or days of horrifying pain that prevent me from leaving my darkened bedroom. We'll skip any emotional peaks or particularly strange symptoms. We'll stick with average days.
So, that’s life. And I think it explains why I find it essentially impossible to work, nearly impossible to work out, and why I haven’t been able to maintain any friendships in years. How do you maintain a social life with a life like this (other than a virtual one)? Virtual friends are great, but they may or may not be counter-productive to real life relations, or so I’ve heard.
And so, I keep on living. Thank goodness for compassionate caretakers and little canine companions.
Disclaimer: I don't mean to say that this is what a day in the life of anyone with these conditions is like...just that this is what an average day at this point in my journey is like.
First, I eat a bowl of Grape Nuts on the couch. This is followed by my morning pills. I may or may not have a dramatic and prolonged choking spell on a pill, or even my water, for that matter. At this point, I am unable to move until lunch time. I force myself to eat lunch exactly two hours after I finish eating breakfast. The routine is helpful in remembering to eat, because hunger often never comes. Quite often, before lunch comes, I have a spell of reduced consciousness. My body goes limp, and I am unable to respond to much. If anyone is around and realizes that I am not just asleep, they may come and force a salt pill and water in my mouth. That will resolve the spell within ten minutes, most days. If no one is around or notices, I may remain semi-conscious for an extended period of time, unable to do anything. For lunch, my mom or my fiancé helps me to get apple slices and Triscuits. Then, I take my lunch pills. At this point, I am still unable to get off the couch for several more hours.
On a good day, around 5:00, I will be able to go get washed up and dressed. I don't have the energy for a shower every day, or to even get dressed every day. But most days, I do get to eat dinner and take more pills. Since I can’t drive, there is nothing to do after dinner. I don’t have the energy anyway. I’d like to go for a walk around the block for my Physical Therapy, but currently, I’m not allowed to, because I’m so likely to have a drop attack. (I would enjoy getting out of the house, but even a walk around the block causes a considerable increase in pain, even on a good day. But this isn't allowed right now.) So, I generally just sit around and watch t.v. until 9:00, because that’s the only time of day that I may have company. At 9:00, I may try a few exercises (planks, toe raises, etc.). I’m always too tired, but I’ll force myself somedays. It is pure torture to exercise. If you see me exercise, you'll wonder what is wrong with me. But that's just the look of pain on my face from the exercise.
Miraculously, the best time of day for me, and many POTS patients, is late at night, which is why I’m typing this at 2:00 a.m. Unfortunately, this is another lonely time of night. Lately, the loneliness leads to a lot of tears, but that's not too unusual. It also ends up being a very unproductive time. But it’s hard to go to sleep too early, when it’s the best you’ve felt all day.
I've skipped over exciting things, like drop attacks, where I collapse straight to the floor in the middle of whatever I'm doing, or days of horrifying pain that prevent me from leaving my darkened bedroom. We'll skip any emotional peaks or particularly strange symptoms. We'll stick with average days.
So, that’s life. And I think it explains why I find it essentially impossible to work, nearly impossible to work out, and why I haven’t been able to maintain any friendships in years. How do you maintain a social life with a life like this (other than a virtual one)? Virtual friends are great, but they may or may not be counter-productive to real life relations, or so I’ve heard.
And so, I keep on living. Thank goodness for compassionate caretakers and little canine companions.
Disclaimer: I don't mean to say that this is what a day in the life of anyone with these conditions is like...just that this is what an average day at this point in my journey is like.
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