So I just had a few random things to say and so I'll make this a short post. oh 2011 how I am so happy you are ending. Ever since January 2011 I've been sick with something! Mono, ear infections, the flu, and my least favorite, CFS. Someone said that 2011 was a bad year for a lot of people but now we can have a positive outlook on the new year knowing that the last one sucked and this is the year to turn things around! (i hope) So 2012, don't let me down! This last school year I'm going to be struggling with catching up with school, but my school seems to be quite accommodating and maybe one day the various meds and vitamins will decide to work.
and here is my final word for 2011. Dear Body, I don't know why you decided to have a mind of your own in 2011, but if i promise to get better at getting help when I need it will you be nice to me? thanks. Love Gabby <3
1 hour and 14 minutes till a new year :)
Saturday, December 31, 2011
Friday, December 30, 2011
La La La.. I forgot again
Dear Mom,
I will not put you in a old people's home for your sake or mine
Love, your favorite daughter
Today Mother and I accompanied my grandma to fill out "a few papers" but really it was 2 hours of this lady talking and they both agreed it was worse than closing on a house. For me, this experience was... boring and I didn't know that sitting and listening to someone talk would be energy draining. In the car, I was ready to fall over and sleep. How old people fit into this is because these papers that needed to be signed we for my grandpa and his new home. Who knew papers were so detailed. So mother, you will be living with me instead of a old people home because listening to all those papers again isn't worth it!
Shopping. this is completely a random subject, but i'm too lazy to start another post. In my family, we shop til we drop! yeeahh! Um...yeah now that term is... well ya know I'm either in a wheelchair or I'm sitting in the aisles in about 10 to 15 minutes. I was so reluctant on the whole wheelchair thing, but when I actually tried it, it made shopping a much better experience! Oh how I love those random stares of confusion and why I'm in a wheelchair when nothing appears to be wrong. I hate sitting in them because i feel short and ridiculous. I agreed on a wheelchair at McCormick park AKA the train park. This allowed me and my family to skip the 30-45 minute wait to ride the train. Earlier in the night it was a wait about an hour and a half wait because this little train took you around the whole park where they had christmas lights and displays galore. Oh how special I felt skipping that line... psh I'll take my advantages when given them!!
I have this thing where I am constantly shaking and occasionally it goes away, but its really irritating because I feel like those old ladies who shake when pouring tea or something. I wonder if it happens to any other CFS/ME patients. Its totally random and veryyy annoying but whatever; it could be worse. Its better than the Migraines!
I hate forgetting everything. I was going to say something and I forgot what I was going to say. so annoying!!!!!!! This one friend I have used to not believe me when I said I forgot all these things so frequently. HA! well now I have a legit reason for my constant brain fog... I'm still trying to remember what I was going to say but maybe I'll remember later. Yes, I know today's post is kinda random but my whole life now is random; Full of random headaches, migraines, aches, tiredness, so on and so on. la la la... still haven't remembered what I wanted to say.
Hope everyone's having a fantastic holiday! And those with CFS, Don't over do it! the price to pay sucks when you try and rebel against it.
I will not put you in a old people's home for your sake or mine
Love, your favorite daughter
Today Mother and I accompanied my grandma to fill out "a few papers" but really it was 2 hours of this lady talking and they both agreed it was worse than closing on a house. For me, this experience was... boring and I didn't know that sitting and listening to someone talk would be energy draining. In the car, I was ready to fall over and sleep. How old people fit into this is because these papers that needed to be signed we for my grandpa and his new home. Who knew papers were so detailed. So mother, you will be living with me instead of a old people home because listening to all those papers again isn't worth it!
Shopping. this is completely a random subject, but i'm too lazy to start another post. In my family, we shop til we drop! yeeahh! Um...yeah now that term is... well ya know I'm either in a wheelchair or I'm sitting in the aisles in about 10 to 15 minutes. I was so reluctant on the whole wheelchair thing, but when I actually tried it, it made shopping a much better experience! Oh how I love those random stares of confusion and why I'm in a wheelchair when nothing appears to be wrong. I hate sitting in them because i feel short and ridiculous. I agreed on a wheelchair at McCormick park AKA the train park. This allowed me and my family to skip the 30-45 minute wait to ride the train. Earlier in the night it was a wait about an hour and a half wait because this little train took you around the whole park where they had christmas lights and displays galore. Oh how special I felt skipping that line... psh I'll take my advantages when given them!!
I have this thing where I am constantly shaking and occasionally it goes away, but its really irritating because I feel like those old ladies who shake when pouring tea or something. I wonder if it happens to any other CFS/ME patients. Its totally random and veryyy annoying but whatever; it could be worse. Its better than the Migraines!
I hate forgetting everything. I was going to say something and I forgot what I was going to say. so annoying!!!!!!! This one friend I have used to not believe me when I said I forgot all these things so frequently. HA! well now I have a legit reason for my constant brain fog... I'm still trying to remember what I was going to say but maybe I'll remember later. Yes, I know today's post is kinda random but my whole life now is random; Full of random headaches, migraines, aches, tiredness, so on and so on. la la la... still haven't remembered what I wanted to say.
Hope everyone's having a fantastic holiday! And those with CFS, Don't over do it! the price to pay sucks when you try and rebel against it.
Tuesday, December 20, 2011
Winter Break
So like everyone else, I'm on winter break. HA! Like it matters! My attendance before I started staying home all day was like 26 out of 50-some days... I never saw this coming since I'm usually and overachiever. Anyways, I really want to go ice skating. I don't know why skating around in circles while freeze is so entertaining, but for some weird reason it is. Unfortunately, if I tried to go I'd probably fall over after about 10 minutes. Ha I always laugh at myself for my lack of stamina. Just a few days ago I was going from the basement to my room and I found that just so exhausting! Wimp. That's all i have to say to myself haha!
I realize this winter break might not include the things i'd normally do; In fact it might include a wheelchair... Yup. I'm going to Arizona to visit my family and one of the things I wanted to do that we didn't do last year was go to this park. There is quite a bit of walking involved so my mom is insisting on using a wheelchair. As much as I am reluctant to sit in a wheelchair and be wheeled around, I know that I would get tired within 10-15 minutes and it wouldn't be much fun for me.
I have to remember that if i do too much I will crash and it won't be good. My most recent crash was yesterday. On saturday, I had a burst of energy and I felt sooooo energetic and ready to clean and dance and bounce around. I'm sure it looked like I was hyped up on sugar or something because I really was so...Manic. Then on Sunday, I could tell that I definitely over did it the day before, yet I insisted on going to my gymnastics banquet. As soon as I walked in the room I was overwhelmed with people. It was good to be out of my house and be around people, especially my team. I didn't do THAT much at it but it sent me into a massive crash that night and into Monday. Oh gabby...don't you ever learn?! Hopefully, I won't make the same mistake and I can enjoy "winter break" (i should say time with family) without having too many crashes
As the New year approches, I wonder what the year is going to look like for me. Will I get better? Will I return to school? I really have no clue. So good luck to me on being patient!
I realize this winter break might not include the things i'd normally do; In fact it might include a wheelchair... Yup. I'm going to Arizona to visit my family and one of the things I wanted to do that we didn't do last year was go to this park. There is quite a bit of walking involved so my mom is insisting on using a wheelchair. As much as I am reluctant to sit in a wheelchair and be wheeled around, I know that I would get tired within 10-15 minutes and it wouldn't be much fun for me.
I have to remember that if i do too much I will crash and it won't be good. My most recent crash was yesterday. On saturday, I had a burst of energy and I felt sooooo energetic and ready to clean and dance and bounce around. I'm sure it looked like I was hyped up on sugar or something because I really was so...Manic. Then on Sunday, I could tell that I definitely over did it the day before, yet I insisted on going to my gymnastics banquet. As soon as I walked in the room I was overwhelmed with people. It was good to be out of my house and be around people, especially my team. I didn't do THAT much at it but it sent me into a massive crash that night and into Monday. Oh gabby...don't you ever learn?! Hopefully, I won't make the same mistake and I can enjoy "winter break" (i should say time with family) without having too many crashes
As the New year approches, I wonder what the year is going to look like for me. Will I get better? Will I return to school? I really have no clue. So good luck to me on being patient!
Saturday!
Saturday is my favorite day of the week. Saturdays I get to see my boyfriend and I can leave my house! well sorta. Days like saturday is kind of confusing though because I put on normal clothes and do my hair. If you saw me, you would probably say, “Oh Gabby! You’re better!” yeah yeah. Today I got dressed and did my hair but now I feel like falling over! Everything feels spinny and I get tired from walking up stairs (pathetic I know!)
I’ve had better days, but I’ve also had worse. I concider myself lucky that I don’t have a life-threatening illness or something more dramatic. CFS isn’t ideal, but when I think of other illnesses I remember that someone in the world has it ten times worse than me. The doctors keep asking if I’m depressed, Clinical Depression. No I’m not. I tell them I’m frusterated that my life changed so quickly! How do you explain CFS quickly? you can’t. thats the point of my blog!!
“We make plans and God laughs,” My mom always says. I had planned to go back to school, Get all A’s, and be better than when the Mono knocked me down. I can’t fight back against this and thats probably the most frusterating part of this invisible illness. However, Maybe it’s a lesson to teach me that I can’t do everything by myself, that receiving help is okay. God isn’t punishing me for doing something wrong, he’s just giving me a reminder to trust him.
I’ve had better days, but I’ve also had worse. I concider myself lucky that I don’t have a life-threatening illness or something more dramatic. CFS isn’t ideal, but when I think of other illnesses I remember that someone in the world has it ten times worse than me. The doctors keep asking if I’m depressed, Clinical Depression. No I’m not. I tell them I’m frusterated that my life changed so quickly! How do you explain CFS quickly? you can’t. thats the point of my blog!!
“We make plans and God laughs,” My mom always says. I had planned to go back to school, Get all A’s, and be better than when the Mono knocked me down. I can’t fight back against this and thats probably the most frusterating part of this invisible illness. However, Maybe it’s a lesson to teach me that I can’t do everything by myself, that receiving help is okay. God isn’t punishing me for doing something wrong, he’s just giving me a reminder to trust him.
Orthostatic Intolerance/Invisible Illness
Orthostatic intolerance (OI) is a subcategory of dysautonomia, a disorder of the autonomic nervous system occurring when an individual… that is copied directly from google.
Google’s definition is kind of dry so I’ll attempt to describe it. Every time I stand up I get lightheaded or dizzy. Most times my entire vision goes black, yet I’m still standing. Occasionally I’ll pass out or the room will start to spin. my facebook post where I said I was hugging the floor was because I drop to the floor or start hugging the wall… no joke!
My lovely little invisible illness leaves many people saying, “but you look fine…” Yay for you, you can see that I’m trying. I’m still capable of putting on make up, curling my hair, and wearing nice clothes. HOWEVER, most days I’m in sweats, a ponytail, and my glasses. That’s the confusing part to most people; Don’t be fooled by my apperance i’m still exhausted and probably have at least one random ache (head, stomach, arm, neck, foot, leg, etc.).
I started taking florinef today, and supposedly will help me to be able to do the things I normally do! I’m sending positive thoughts to my body! drinking lots of water and hoping! Now i’ve been on the computer for about 45 minutes and I’m thinking it’s nap time! :)
Google’s definition is kind of dry so I’ll attempt to describe it. Every time I stand up I get lightheaded or dizzy. Most times my entire vision goes black, yet I’m still standing. Occasionally I’ll pass out or the room will start to spin. my facebook post where I said I was hugging the floor was because I drop to the floor or start hugging the wall… no joke!
My lovely little invisible illness leaves many people saying, “but you look fine…” Yay for you, you can see that I’m trying. I’m still capable of putting on make up, curling my hair, and wearing nice clothes. HOWEVER, most days I’m in sweats, a ponytail, and my glasses. That’s the confusing part to most people; Don’t be fooled by my apperance i’m still exhausted and probably have at least one random ache (head, stomach, arm, neck, foot, leg, etc.).
I started taking florinef today, and supposedly will help me to be able to do the things I normally do! I’m sending positive thoughts to my body! drinking lots of water and hoping! Now i’ve been on the computer for about 45 minutes and I’m thinking it’s nap time! :)
How are you today? Tired.
Mom: How are you today?
Me: I’m good
Mom: how are you really doing?
Me: tired. headache. dizzy. what did i do yesterday…? can’t remember.
This is how my mornings go every day. I’m always tired even after sleeping anywhere from 11-16 hours a night. you know that refreshed feeling you get after sleeping? I never feel that :( Whats funny is somedays I look great, i’m hyper and my regular bubbly self. but that only lasts so long. I’ll usually fall asleep in the car or come home and sleep or sit on the couch WISHING I could sleep. obviously I’m tired since its called chronic fatigue syndrome but really tired 90% of my life? sucks :( Sure, things aren’t going the way I planned for my junior year but what can I do about it. Mope? but nobody looks attractive when they’re mopping! I will find the rainbow among a storm. I’m determined to get my life back :)
Me: I’m good
Mom: how are you really doing?
Me: tired. headache. dizzy. what did i do yesterday…? can’t remember.
This is how my mornings go every day. I’m always tired even after sleeping anywhere from 11-16 hours a night. you know that refreshed feeling you get after sleeping? I never feel that :( Whats funny is somedays I look great, i’m hyper and my regular bubbly self. but that only lasts so long. I’ll usually fall asleep in the car or come home and sleep or sit on the couch WISHING I could sleep. obviously I’m tired since its called chronic fatigue syndrome but really tired 90% of my life? sucks :( Sure, things aren’t going the way I planned for my junior year but what can I do about it. Mope? but nobody looks attractive when they’re mopping! I will find the rainbow among a storm. I’m determined to get my life back :)
20 things about my illness
So a girl named Sara posted something similiar on her blog so i a few questions but its basically the same idea.
1. My illness is called: Chronic Fatigue Syndrom (cfs)
2. I’ve been sick since: January 2011 with mono, CFS since September 2011
3. The biggest adjustment I had to make: well… EVERYTHING. The most consistant thing in my life is my family and the part of my day where i sit on the couch. I can’t spend to much time standing or doing too much activity or I pay for it later.
4. Most people assume: That I’m faking it. Trust me I WISH I was faking it because then I might actually get my life back.
5. The hardest part of mornings: is the getting up part. usually when i get out of bed everything starts spinning or goes black.
6. How many doctors have I seen?: well a neuropychologist, a neurologist, a cardiologist, my primary care doctor, the lady who looked way too young to be a doctor (at hospital), the MRI lady, various number of nurses who ask the same questions every time.
7. Technology I can’t live without is: my phone or my ipod… its a toss up because my phone keeps me in touch with all my friends, but my ipod has more access to social networking!
8. The hardest part about nights: not being able to sleep but being exhausted.
9. Today I’m feeling: alright, no major headache just EXTREMELY tired.
10. If I had to choose between an Invisible illness or visible I’d chose: Visible, people would be more aware of it and not ask so many questions.
11. The hardest part to accept is: that this isn’t going away any time soon.
12. What do I do about school: well I obviously am not in school anymore and I don’t know whats going to happen with all this. Next semester I’ll most likely be doing online courses and i’ll make up credits i didn’t get this semester some how.
13. People would be surprised to know: I like painting my nails still but i’m very impatient with them drying.
14. Activity I miss is: Gymnastics, even though the season is over now it was really tough to finish the season and I wish I had had more energy to see my team compete at some big meets.
15. Things I’ve had to give up: gymnastics, school, anything involving standing
16. New hobbies: Well I’m not sure yet but something crafty :)
17. On good days I can: Go out to eat, hang out with my boyfriend, be on the computer, see a movie
18. On bad days I: sit on the couch in my PJ’s and watch TV or wishing I could sleep.
19. The Most frusterating part is: Many people think i’m faking it because I don’t know how to explain CFS. Its also frusterating not to be able to do everything I used to. ALSO, this isn’t an illness I can fight through. I can’t just stay strong and try and go about life as normal because when I try, I get knocked down.
20. No matter how much I sleep: I’m always tired. you know that feeling where you wake up and you feel totally refreshed? doesn’t happen to me anymore.
all i can do is push through this. and trust God because he has some kind of plan for my life. i just don’t know what that is yet…
1. My illness is called: Chronic Fatigue Syndrom (cfs)
2. I’ve been sick since: January 2011 with mono, CFS since September 2011
3. The biggest adjustment I had to make: well… EVERYTHING. The most consistant thing in my life is my family and the part of my day where i sit on the couch. I can’t spend to much time standing or doing too much activity or I pay for it later.
4. Most people assume: That I’m faking it. Trust me I WISH I was faking it because then I might actually get my life back.
5. The hardest part of mornings: is the getting up part. usually when i get out of bed everything starts spinning or goes black.
6. How many doctors have I seen?: well a neuropychologist, a neurologist, a cardiologist, my primary care doctor, the lady who looked way too young to be a doctor (at hospital), the MRI lady, various number of nurses who ask the same questions every time.
7. Technology I can’t live without is: my phone or my ipod… its a toss up because my phone keeps me in touch with all my friends, but my ipod has more access to social networking!
8. The hardest part about nights: not being able to sleep but being exhausted.
9. Today I’m feeling: alright, no major headache just EXTREMELY tired.
10. If I had to choose between an Invisible illness or visible I’d chose: Visible, people would be more aware of it and not ask so many questions.
11. The hardest part to accept is: that this isn’t going away any time soon.
12. What do I do about school: well I obviously am not in school anymore and I don’t know whats going to happen with all this. Next semester I’ll most likely be doing online courses and i’ll make up credits i didn’t get this semester some how.
13. People would be surprised to know: I like painting my nails still but i’m very impatient with them drying.
14. Activity I miss is: Gymnastics, even though the season is over now it was really tough to finish the season and I wish I had had more energy to see my team compete at some big meets.
15. Things I’ve had to give up: gymnastics, school, anything involving standing
16. New hobbies: Well I’m not sure yet but something crafty :)
17. On good days I can: Go out to eat, hang out with my boyfriend, be on the computer, see a movie
18. On bad days I: sit on the couch in my PJ’s and watch TV or wishing I could sleep.
19. The Most frusterating part is: Many people think i’m faking it because I don’t know how to explain CFS. Its also frusterating not to be able to do everything I used to. ALSO, this isn’t an illness I can fight through. I can’t just stay strong and try and go about life as normal because when I try, I get knocked down.
20. No matter how much I sleep: I’m always tired. you know that feeling where you wake up and you feel totally refreshed? doesn’t happen to me anymore.
all i can do is push through this. and trust God because he has some kind of plan for my life. i just don’t know what that is yet…
My poor head
Aww! So I’ve been figuring out tumblr and twitter today and because of CFS it resulted in my head hurting…surprise surprise. It doesn’t help that my head hurt earlier today! My headaches and migraines are one of the worst parts of CFS because they hurt!! I can’t explain but it makes wanna crawl in a hole and hide forever. Poor head…feel better soon :)
What is CFS/ME?
CFS stands for Chronic Fatigue Syndrome.
ME stands for Myalgic Encephalomyelitis (CFS is referred to ME outside of the United States).
CFS/ME is an Autoimmune disease. Google defines an autoimmune disease as: any of a large group of diseases characterized by abnormal functioning of the immune system that causes your immune system to produce antibodies against your own tissues
basically, it's your body attacking itself...
CFS/ME affects and weakens the Immune system, Endocrine System, Cardiovascular… Overall weakening the entire body. It affects both genders and all ages.
Approximately 1 million Americans have CFS/ME which is more than breast cancer, lung cancer and Aids combine! how ridiculous is it that there isn't more money invested to finding a cure or more about it. 17 million people suffer from it world wide. At least 25% of CFS/ME patients are fully disabled. They’re often housebound or bedridden for several years. Hopefully, I can get part of my life back soon and not be part of that statistic.
“I can tell you if I had to chose between the two illnesses (2009) I would rather have HIV” -Dr. Nancy Klimas, The New York Times.
“My HIV patients are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families” —Nancy Klimas, M.D.
Symptoms include: orthostatic intolerance, headaches, migraines neurological problems, memory loss/ brain fog and other cognitive dysfunction, nausea, muscle weakness or pain, exhaustion from over exertion, continual sensory overload, sensitivity to light or sound, dizziness, insomnia, oh and how could we forget EXTREME TIREDNESS; no matter how much we sleep its never enough, …and the list can continue but I’m sort of tired…go figure!
Many CFS/ME patients have POTS as well, Postural Orthostatic Tachycardia Syndrome, which is a *dysautonomia condition dealing with orthostatic intolerance (see http://lifeonpause123.blogspot.com/2011/12/orthostatic-intoleranceinvisible.html which is my attempt at explaining). Basically, when I stand up my pulse and blood pressure will spike 20 points or higher. I've gone from laying down with a pulse of 100 to standing with a pulse of 150 after standing for 5 minutes. Normal people's body would regulate that after 5 minutes. In my case, I have NMH (Neurally Mediated Hypotension as well as POTS. I don't know much about NMH, but I'm told they all fit together.
*Dysautonomia: "a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system" (MedicalNewsToday.com)
Well that's CFS/ME. it sucks. a lot. but with enough positivity and support I’m ready to take on life with CFS…sorta…i’m kinda tired today though…so a nap THEN take on life
Sources:
http://www.youtube.com/watch?v=KXVO99mDulw
http://www.smileforme.org.uk/symptoms/
http://www.cfids.org/about-cfids/research.asp
http://www.medicalnewstoday.com/releases/76785.php
ME stands for Myalgic Encephalomyelitis (CFS is referred to ME outside of the United States).
CFS/ME is an Autoimmune disease. Google defines an autoimmune disease as: any of a large group of diseases characterized by abnormal functioning of the immune system that causes your immune system to produce antibodies against your own tissues
basically, it's your body attacking itself...
CFS/ME affects and weakens the Immune system, Endocrine System, Cardiovascular… Overall weakening the entire body. It affects both genders and all ages.
Approximately 1 million Americans have CFS/ME which is more than breast cancer, lung cancer and Aids combine! how ridiculous is it that there isn't more money invested to finding a cure or more about it. 17 million people suffer from it world wide. At least 25% of CFS/ME patients are fully disabled. They’re often housebound or bedridden for several years. Hopefully, I can get part of my life back soon and not be part of that statistic.
“I can tell you if I had to chose between the two illnesses (2009) I would rather have HIV” -Dr. Nancy Klimas, The New York Times.
“My HIV patients are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families” —Nancy Klimas, M.D.
Symptoms include: orthostatic intolerance, headaches, migraines neurological problems, memory loss/ brain fog and other cognitive dysfunction, nausea, muscle weakness or pain, exhaustion from over exertion, continual sensory overload, sensitivity to light or sound, dizziness, insomnia, oh and how could we forget EXTREME TIREDNESS; no matter how much we sleep its never enough, …and the list can continue but I’m sort of tired…go figure!
Many CFS/ME patients have POTS as well, Postural Orthostatic Tachycardia Syndrome, which is a *dysautonomia condition dealing with orthostatic intolerance (see http://lifeonpause123.blogspot.com/2011/12/orthostatic-intoleranceinvisible.html which is my attempt at explaining). Basically, when I stand up my pulse and blood pressure will spike 20 points or higher. I've gone from laying down with a pulse of 100 to standing with a pulse of 150 after standing for 5 minutes. Normal people's body would regulate that after 5 minutes. In my case, I have NMH (Neurally Mediated Hypotension as well as POTS. I don't know much about NMH, but I'm told they all fit together.
*Dysautonomia: "a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system" (MedicalNewsToday.com)
Well that's CFS/ME. it sucks. a lot. but with enough positivity and support I’m ready to take on life with CFS…sorta…i’m kinda tired today though…so a nap THEN take on life
Sources:
http://www.youtube.com/watch?v=KXVO99mDulw
http://www.smileforme.org.uk/symptoms/
http://www.cfids.org/about-cfids/research.asp
http://www.medicalnewstoday.com/releases/76785.php
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