Do random pulses bug you? I hate when I can feel my pulse in my finger or my arm or wherever! It happens to me a lot when I'm trying to sleep, but Instead I find myself counting every time it pulses. My pulse has become RIDICULOUSLY high lately. My average Resting pulse is about 103 beats per minute. Its really weird but my doctor isn't worried. Haha I kept wondering what would happen if i tried to run or excersice since its so high. I found out when I ran inside the house before church and grab my water... Bad idea. My pulse went to 142bpm and never got to church. It takes so much more energy to stand up than people without CFS realize. And of course the orthostatic intolerance makes me dizzy or lightheaded whenever i stand as well. I think from being limited physically I've come to miss simply walking, running, bouncing around more than I when I was able to do them; when i had that option.
My sister and brother don't exactly see the bad side of CFS. They hear me complain about headaches and dizziness all the time but they don't see me every day laying on the couch struggling to get up and fill my water bottle. They see me staying home day after day, my lack of chores but still being able to see my boyfriend on the weekends(Oh boyfriend. What would I do without you? seeing him and going to church are about the only time i'm around people and outside my house). The invisible illness. I can't decide if I'd rather have one visible or invisible. I'm leaning towards visible that way people know I'm not just trying to get out of school and have an easy life. Hey people! I wish I was faking this so I could be better and regain my life.
I am starting to take classes to get the credits I need for next year. One thing I miss about school, besides friends, is the teachers giving lectures and busy work to remember the information. The class I've decided to take is Modern US History. I have read everything stright out the text book, i'm yawning just at the thought of it! Even though it's boring, its being productive. That was probably one of the most frustrating things of last semester; doing absolutely NOTHING productive. I am one of those... what do you call them... overachievers? I like the challege of harder classes, so when CFS decided to get between me and school I was not very happy!
OH! Last week was really exciting because I was able to go to Chinese New Year without passing out!! It was standing in crowds and busy stores for about 2 hours maybe? Super exciting accomplishment :) I was only crashed for about... 2 days? but I was still able to enjoy Chinese new year
Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts
Monday, February 6, 2012
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
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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