Well I started following this person on tumblr who is sick too and its just these pictures fit perfectly and make me laugh! Someone on my Teens with CFS group on Facebook posted this and it was just too great! So I posted my favs
http://lifeonpause123.tumblr.com/
:)
Monday, April 8, 2013
Monday, January 28, 2013
Level of Understanding and the GED
I think having this illness has given me a new level of understanding. The main thing being you can't look at someone and know their story, so you have no right to judge them. You never know what kind of storm God has asked someone to walk through.
I get looks (or maybe I'm just paranoid...) when I'm in a wheelchair. Pity, sympathy, confusion, judgement and just plain gawking. When I see someone and I don't understand their situation I just send God a prayer for them. I don't know if it's medical or life or what but I know God is watching over them.
And hey random rant time! When people or doctors tell me there is a simple cure such as "strengthening my core" or "change my environment" or it's just that I am "de-conditioned" I want to scream in their face. What in the heck gives you the right to tell me its my fault for not trying harder. If it was that simple I WOULDN'T BE TALKING ABOUT IT. Especially doctors, you have a PhD? Good for you, but shouldn't you be willing to learn instead of telling me my core isn't strong enough? Stupid physical therapist... :)send that lady a mental hug and hope she broadens her knowledge one day.
And now about the GED...
Teenagers in general can be a bit... narrow-mined. Even more narrow-minded are the honor students. Here's how they see it, community college is below them and the GED is not an option because it's for stupid people. Okay by saying that, I don't mean every honor student thinks that or that they are bad people. I was one and that's just the thoughts that were in the back of my head and i know there are others who have the similar views. We are told by teachers to go to college and we make our 5 year plans assuming we go to universities; they don't mention community college to us. It doesn't matter if you don't know what you want to be, university is the path we are supposed to chose.
The teachers aren't trying to be mean or anything, it's just the general assumption to those who are advanced. It is messed up, however the truth is 1 in every 20 first year college students is a GED graduate. A teacher has never said the GED is worth less and I don't think any of my friends have either, but there is also this assumption that you won't get hired or that you will get looked down on for having a GED versus a high school diploma. Don't tell me that future employers will look down on it because 95% of U.S. employers consider GED graduates the same as traditional high school graduates in regard to hiring, salary, and opportunity for advancement. Ever heard of U.S. Senator Ben Nighthorse Campbell? Yeah, me neither. Well he is/was a Senator for Colorado who earned is a GED graduate. I don't know if he still is or when he was a senator and my brain can only handle so much research at a time, BUT the words US senator caught my eye. Bill Cosby has his GED as well and we all know who he is.
The General Education Development test was created in 1942 to help World War II veterans finish their high school education and reenter "civilian life." in 1947 New York made the test available to civilians and the program awarded a high school diploma to those who passed. You have to score 410 or higher on each test (out of 800 which was my reading score! not to brag or anything...) which consists of Math, Science, Social Studies, Reading, and Writing. KEEP READING I SWEAR THERE IS MORE THAN JUST FACTS !
In 2010, more than 757,000 adults worldwide took some portion of the GED® test. Of that total, more than 655,000 completed test and 474,000 (72%) earned a passing score. That means they are trying which you have to give them props for because not everyone can be valedictorian and go to Harvard. Life happens... which is my entire point of this blog. "Those who earn a high enough score to earn a GED surpass and/or outperform about one third of high school seniors. Someone who passes the GED has demonstrated knowledge equal to or greater than 40% of those graduating seniors." Those with a GED are in fact VERY competent. I have to thank Mr. Chalmer Naugle who was incredibly helpful through out my entire GED-earning process!
I know there have been some other kids with CFS/ME who were debating over high school diploma versus GED and it just seemed like the choice was finish high school. I am SOOOO glad my mom talked to Chalmer because instead of suffering though high school I just got it over with! So much less stress and in my condition i just had to accept that life happens and understand that the high school just isn't for everyone. I know we have all pictured that graduation day in our heads since the day we entered high school as freshman, I know! I was supposed to walk across the gorgeous Red Rocks Amphitheater this May, but there was no way i would have finished 2 years worth of school in time to walk. I asked if it was really worth it and it just wasn't.
Well this only took me a month to write! I guess I'll just keep my hopes high and accomplish my goals one at a time.
but as for me, I will always have hope -Psalms 71:14
Resources
http://www.westkentucky.kctcs.edu/en/Workforce_Solutions/GED_Testing.aspx
http://www.gedtestingservice.com/testers/faqs-test-taker
http://www.passged.com/faqs.php
I get looks (or maybe I'm just paranoid...) when I'm in a wheelchair. Pity, sympathy, confusion, judgement and just plain gawking. When I see someone and I don't understand their situation I just send God a prayer for them. I don't know if it's medical or life or what but I know God is watching over them.
And hey random rant time! When people or doctors tell me there is a simple cure such as "strengthening my core" or "change my environment" or it's just that I am "de-conditioned" I want to scream in their face. What in the heck gives you the right to tell me its my fault for not trying harder. If it was that simple I WOULDN'T BE TALKING ABOUT IT. Especially doctors, you have a PhD? Good for you, but shouldn't you be willing to learn instead of telling me my core isn't strong enough? Stupid physical therapist... :)send that lady a mental hug and hope she broadens her knowledge one day.
And now about the GED...
Teenagers in general can be a bit... narrow-mined. Even more narrow-minded are the honor students. Here's how they see it, community college is below them and the GED is not an option because it's for stupid people. Okay by saying that, I don't mean every honor student thinks that or that they are bad people. I was one and that's just the thoughts that were in the back of my head and i know there are others who have the similar views. We are told by teachers to go to college and we make our 5 year plans assuming we go to universities; they don't mention community college to us. It doesn't matter if you don't know what you want to be, university is the path we are supposed to chose.
The teachers aren't trying to be mean or anything, it's just the general assumption to those who are advanced. It is messed up, however the truth is 1 in every 20 first year college students is a GED graduate. A teacher has never said the GED is worth less and I don't think any of my friends have either, but there is also this assumption that you won't get hired or that you will get looked down on for having a GED versus a high school diploma. Don't tell me that future employers will look down on it because 95% of U.S. employers consider GED graduates the same as traditional high school graduates in regard to hiring, salary, and opportunity for advancement. Ever heard of U.S. Senator Ben Nighthorse Campbell? Yeah, me neither. Well he is/was a Senator for Colorado who earned is a GED graduate. I don't know if he still is or when he was a senator and my brain can only handle so much research at a time, BUT the words US senator caught my eye. Bill Cosby has his GED as well and we all know who he is.
The General Education Development test was created in 1942 to help World War II veterans finish their high school education and reenter "civilian life." in 1947 New York made the test available to civilians and the program awarded a high school diploma to those who passed. You have to score 410 or higher on each test (out of 800 which was my reading score! not to brag or anything...) which consists of Math, Science, Social Studies, Reading, and Writing. KEEP READING I SWEAR THERE IS MORE THAN JUST FACTS !
In 2010, more than 757,000 adults worldwide took some portion of the GED® test. Of that total, more than 655,000 completed test and 474,000 (72%) earned a passing score. That means they are trying which you have to give them props for because not everyone can be valedictorian and go to Harvard. Life happens... which is my entire point of this blog. "Those who earn a high enough score to earn a GED surpass and/or outperform about one third of high school seniors. Someone who passes the GED has demonstrated knowledge equal to or greater than 40% of those graduating seniors." Those with a GED are in fact VERY competent. I have to thank Mr. Chalmer Naugle who was incredibly helpful through out my entire GED-earning process!
I know there have been some other kids with CFS/ME who were debating over high school diploma versus GED and it just seemed like the choice was finish high school. I am SOOOO glad my mom talked to Chalmer because instead of suffering though high school I just got it over with! So much less stress and in my condition i just had to accept that life happens and understand that the high school just isn't for everyone. I know we have all pictured that graduation day in our heads since the day we entered high school as freshman, I know! I was supposed to walk across the gorgeous Red Rocks Amphitheater this May, but there was no way i would have finished 2 years worth of school in time to walk. I asked if it was really worth it and it just wasn't.
Well this only took me a month to write! I guess I'll just keep my hopes high and accomplish my goals one at a time.
but as for me, I will always have hope -Psalms 71:14
Resources
http://www.westkentucky.kctcs.edu/en/Workforce_Solutions/GED_Testing.aspx
http://www.gedtestingservice.com/testers/faqs-test-taker
http://www.passged.com/faqs.php
Sunday, January 27, 2013
Old people are cute/2013
I KNOW THIS IS LATE(i forgot to post this on new years), but Congrats to the class of 2013! You are half way to graduation! ...I am done :) For anyone who didn't know, I passed my GED in the top 5th percentile and I am taking English Composition next semester! Whooo! It feel good to be getting on with life. 2012 was a sucky year and I'm hoping for better from 2013. I am thankful for a good doctor who has been incredible helpful and a family who has given me all the love and support I could ask for.
Now, on a totally random note: I can't help but notice the similarities to me an old person. My grandma lives in a senior community and we were talking to one of her friends who was told she would need the tilt table test. Alright, I knew a lot of old people have POTS because the cardiologist didn't want to diagnose me with it for the reason that I would "be stuck with it for life and I'm too young." My meds box can definitely compete with someones of an older age, I use a wheelchair, I have handicap parking, I have a dog to keep me company, I forget easily, I'm not too active. The list could probably continue. HAHA, I find this amusing. Oh right I forgot the naps and talking to inanimate objects and pets.
Okay back to 2013. All I want is to get on with my life. Moving on has been hard, but I'm learning that things happen and when you can't change them you shouldn't dwell. I could spend all day playing WHAT IF...but really? whats the point when my energy is already limited as it is. So here is to 2013. Moving on and getting better. I wish I had a better way to end this post but all I got is a smooth sea never made a skillful sailor..... thanks pintrest :P Happy New Years Everyone!
Now, on a totally random note: I can't help but notice the similarities to me an old person. My grandma lives in a senior community and we were talking to one of her friends who was told she would need the tilt table test. Alright, I knew a lot of old people have POTS because the cardiologist didn't want to diagnose me with it for the reason that I would "be stuck with it for life and I'm too young." My meds box can definitely compete with someones of an older age, I use a wheelchair, I have handicap parking, I have a dog to keep me company, I forget easily, I'm not too active. The list could probably continue. HAHA, I find this amusing. Oh right I forgot the naps and talking to inanimate objects and pets.
Okay back to 2013. All I want is to get on with my life. Moving on has been hard, but I'm learning that things happen and when you can't change them you shouldn't dwell. I could spend all day playing WHAT IF...but really? whats the point when my energy is already limited as it is. So here is to 2013. Moving on and getting better. I wish I had a better way to end this post but all I got is a smooth sea never made a skillful sailor..... thanks pintrest :P Happy New Years Everyone!
Wednesday, December 12, 2012
Why me?!
Do you ever wonder why me? I do, all the time. Why do I have to be the one to suffer? Why am I the one with a lack of energy? Will I ever have the energy that I used to? It seems like such a big request. I never realized or appreciated the ability to get up and go about the day like a normal person. I ask myself how it was ever possible for me to go to school full time. Its been so long (almost 2 years because of mono) since school full time has been an option and even thinking about it is exhausting!
I have always pushed myself to the limits, so learning when to stop or slow down hasn't been easy for me. When I go too far, I pay a price. I finished taking my GED on Saturday and I am paying for it now. I was already knocked down from the activity of thanksgiving break. My weekly IV helped enough that I was able to finish, (yay!) but it was not easy! Dang, I forgot how much these crashes suck!! Its been awhile since I've suffered from one like this. I'm currently curled in a blanket with Sofie because moving to the couch would take too much energy; Maybe I'm lazy... or maybe I'm sick, I don't know the difference. My focus is slowly slipping away from me and my head feels fuzzy from the concentration. I can't really describe the feeling, but I think this is how my little brother feels when he's doing homework and I can now understand how much harder school is for him than it has ever been for me.
Well, I was just having one of those days where I don't know what to do and I was asking whyyyy meeeee?!?! la la la I'm having a bit of trouble remembering what else I was going to say. But hey I'm taking English next semester and I finished taking the GED tests! I am waiting for the writing scores but I passed everything else and even got a perfect score on Reading! So on the positive side, things are getting better. :)
I have always pushed myself to the limits, so learning when to stop or slow down hasn't been easy for me. When I go too far, I pay a price. I finished taking my GED on Saturday and I am paying for it now. I was already knocked down from the activity of thanksgiving break. My weekly IV helped enough that I was able to finish, (yay!) but it was not easy! Dang, I forgot how much these crashes suck!! Its been awhile since I've suffered from one like this. I'm currently curled in a blanket with Sofie because moving to the couch would take too much energy; Maybe I'm lazy... or maybe I'm sick, I don't know the difference. My focus is slowly slipping away from me and my head feels fuzzy from the concentration. I can't really describe the feeling, but I think this is how my little brother feels when he's doing homework and I can now understand how much harder school is for him than it has ever been for me.
Well, I was just having one of those days where I don't know what to do and I was asking whyyyy meeeee?!?! la la la I'm having a bit of trouble remembering what else I was going to say. But hey I'm taking English next semester and I finished taking the GED tests! I am waiting for the writing scores but I passed everything else and even got a perfect score on Reading! So on the positive side, things are getting better. :)
Saturday, November 3, 2012
Long time no post!
Well it has been a long time since I last wrote on my blog... mostly because it would depress me or I would forget what I was talking about or just get distracted by the fly buzzing around my room. Oh and I added a email subscribe button and pictures!
There is no way around the cold truth of CFS/ME. it SUCKS! For teens, it tends to takes these high achieving, athletic, active kids and flips their life like a light switch. We have our good days where we can go out and look good for the world, but then everyone around us wonders where the illness really is. They don't see us in bed paying for that day out with headaches and dizziness and all the pain that comes along with it. Another side of CFS/ME that people don't see is the emotional side. Sadness, irritation, anger, depression, hurt, loneliness, and so much more. Unless you have it you can only imagine what its like.
This year would have been my senior year. I feel like it was my fault I had to drop out of school. As if I didn't fight hard enough to stay in it, but with CFS fighting against it only makes it worse. I'm sad because I'm missing what was supposed to be the best year of high school. Homecoming week was rough. I was added to various school pages for seniors and it was like, "do you guys even notice that I don't go to school?!" Everyone was making senior shirts and there was a toga contest and the multiple posts about "Senior year homecoming." I think facebook sucks just because its a reminder of everything I'm missing. Pictures are definitely the worst though. Seeing your friends get ready without you and going to dinner together and everything else that goes with it, it is a bit depressing. I know prom season and graduation are going to be sad as well. I never got to go to prom and graduation is graduation.
People say that years from now you're most likely not going to be friends with any of your friends from high school. It has definitely filtered my friends, but it's sad that very FEW of my "friends" checked up on me. Thank goodnes for my wonderful boyfriend who kept me sane and was there with me, even carrying me up and down the stairs of my house. My friend, Maddie, has also been there to lift my spirits. So thanks, Maddie and Caleb!
Overall my high school experience was a short year and a half of memories. Second semester of my sophomore year I missed 1-2 days a week until I was out for a month in March from mono. The rest of that year was spent trying to make up work and catch up and Junior year was just and epic fail if I've ever seen one; Two weeks of good attendence then it was all downhill from there. Half the time the only reason I would show up was so I could go to gymnastics practice. Gymnastics will forever be the best memories of my high school life. Wonderful coaches and the best team despite the drama, but what team of girls doesn't have drama? I wish i could have gone back this year and overwrite the terrible last meet I had last year. I wasn't ready to stop gymnastics. I thought I would go back to school second semester and have gymnastics as a class so I could practice for this year... hahaha! That was back when I didn't take my illness seriously. Anyways i've seen pictures of the team this year and it just is incredibly upsetting and it's probably the worst part of not being in school. Didn't matter where I was in the line up I loved the team and doing my best... and jumping around on 4 inches of wood! ...bad idea for someone with POTS (Postural orthostatic tachycardia syndrome, aka the reason my heart rate goes from 85 to 110-140 after standing for five minutes).
HOWEVER, I'm starting to get better. I'll hopefully take my GED next week and take a class or two next semester at a community college. Upside to this is I have no clue what I want to do with my life and I can figure that out BEFORE I go to a university. A university is still in the big picture, but might as well get the basics done! See look, say this stuff has already put me in a better mood. This is how my life is, and I can't change it; I can only change the way I look at it. So, I'm going to pray that I continue to get better and pray for everyone else to get better as well. Pray that this gets easier to deal with and that I will be a little more understanding to those who also have hard lives. A good reminder is that my life could be worse and as long as nobody else in my family gets this i'm good. sister, that one is for you.. i FORBID it. and mom. you too. :)
"Let your hope make you glad. Be patient in time of trouble & never stop praying" Romans 12:12
There is no way around the cold truth of CFS/ME. it SUCKS! For teens, it tends to takes these high achieving, athletic, active kids and flips their life like a light switch. We have our good days where we can go out and look good for the world, but then everyone around us wonders where the illness really is. They don't see us in bed paying for that day out with headaches and dizziness and all the pain that comes along with it. Another side of CFS/ME that people don't see is the emotional side. Sadness, irritation, anger, depression, hurt, loneliness, and so much more. Unless you have it you can only imagine what its like.
This year would have been my senior year. I feel like it was my fault I had to drop out of school. As if I didn't fight hard enough to stay in it, but with CFS fighting against it only makes it worse. I'm sad because I'm missing what was supposed to be the best year of high school. Homecoming week was rough. I was added to various school pages for seniors and it was like, "do you guys even notice that I don't go to school?!" Everyone was making senior shirts and there was a toga contest and the multiple posts about "Senior year homecoming." I think facebook sucks just because its a reminder of everything I'm missing. Pictures are definitely the worst though. Seeing your friends get ready without you and going to dinner together and everything else that goes with it, it is a bit depressing. I know prom season and graduation are going to be sad as well. I never got to go to prom and graduation is graduation.
People say that years from now you're most likely not going to be friends with any of your friends from high school. It has definitely filtered my friends, but it's sad that very FEW of my "friends" checked up on me. Thank goodnes for my wonderful boyfriend who kept me sane and was there with me, even carrying me up and down the stairs of my house. My friend, Maddie, has also been there to lift my spirits. So thanks, Maddie and Caleb!
Overall my high school experience was a short year and a half of memories. Second semester of my sophomore year I missed 1-2 days a week until I was out for a month in March from mono. The rest of that year was spent trying to make up work and catch up and Junior year was just and epic fail if I've ever seen one; Two weeks of good attendence then it was all downhill from there. Half the time the only reason I would show up was so I could go to gymnastics practice. Gymnastics will forever be the best memories of my high school life. Wonderful coaches and the best team despite the drama, but what team of girls doesn't have drama? I wish i could have gone back this year and overwrite the terrible last meet I had last year. I wasn't ready to stop gymnastics. I thought I would go back to school second semester and have gymnastics as a class so I could practice for this year... hahaha! That was back when I didn't take my illness seriously. Anyways i've seen pictures of the team this year and it just is incredibly upsetting and it's probably the worst part of not being in school. Didn't matter where I was in the line up I loved the team and doing my best... and jumping around on 4 inches of wood! ...bad idea for someone with POTS (Postural orthostatic tachycardia syndrome, aka the reason my heart rate goes from 85 to 110-140 after standing for five minutes).
HOWEVER, I'm starting to get better. I'll hopefully take my GED next week and take a class or two next semester at a community college. Upside to this is I have no clue what I want to do with my life and I can figure that out BEFORE I go to a university. A university is still in the big picture, but might as well get the basics done! See look, say this stuff has already put me in a better mood. This is how my life is, and I can't change it; I can only change the way I look at it. So, I'm going to pray that I continue to get better and pray for everyone else to get better as well. Pray that this gets easier to deal with and that I will be a little more understanding to those who also have hard lives. A good reminder is that my life could be worse and as long as nobody else in my family gets this i'm good. sister, that one is for you.. i FORBID it. and mom. you too. :)
"Let your hope make you glad. Be patient in time of trouble & never stop praying" Romans 12:12
Monday, June 11, 2012
20 things about my illness (again)
So I did this awhile back and most of my answers have changed from October when I originally posted it on tumblr. The number one fact that has stayed the same is that CFS/ME SUCKS. The gray is the old answer and the blue is my new answer.
1. My illness is called: Chronic Fatigue Syndrome (cfs) or myalgic encephalomyelitis (ME)
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 constant 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.
School, I stopped going to school in about mid-October and was homebound all second semester but never finished that .25 credit I had been working on for American history.
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.
That it must be nice to have time to sleep all day and drink Gatorade all day... Honestly, i never want to drink Gatorade again and if only I COULD sleep, its not a luxury anymore
5. The hardest part of mornings:
is the getting up part. usually when i get out of bed everything starts spinning or goes black.
It's still getting up. having the energy to finally accept that I'm not getting anymore sleep!
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.
additionally I've seen another neurologist and physical therapist and some doctor who was filling in for my pediatrician who thought I was full of crap
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!
Netflix. It's my life! Facebook is no longer fun to look at because I see everyone having a life. I guess most people wouldn't know how to be around a sick person but very few friends have called or even texted to see how I'm doing.
8. The hardest part about nights:
not being able to sleep but being exhausted.
Getting to sleep.
9. Today I’m feeling:
alright, no major headache just EXTREMELY tired.
Way better than I was in October. I'm tired from cleaning earlier but at least I have the energy to clean...
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.
Still the same because people thinking I'm faking it is the worst.
11. The hardest part to accept is:
that this isn’t going away any time soon.
That I'm not finishing high school. This would be my senior year and thinking about it makes me really sad. Gymnastics, graduation and prom were the big things and I know I still have the option to finish, but the good things outweigh the things I'm missing.
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.
GED
13. People would be surprised to know:
I like painting my nails still but i’m very impatient with them drying.
What does painting my nails have to do with CFS..? Anyways, people would be surprised to know how many other people suffer from CFS. I've talked to a few other kids who didn't know about it and most likely have it. LOOK ABOVE PEOPLE! the numbers above speak for themselves!
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.
School, I miss it even though it sucked. I never noticed how much energy it takes to go, listen, understand, and walk from class to class.
15. Things I’ve had to give up:
gymnastics, school, anything involving standing
I'm capable of doing activities in my wheelchair now! But I've had to give up activities with friends
16. New hobbies:
Well I’m not sure yet but something crafty :)
I started making earrings! My friend came over one day and showed me how and I've made them for fundraisers and as gifts. the other day I was at my moms training and people kept coming up to me and commenting on how pretty they were so I decided to sell them! It was fun.
17. On good days I can:
Go out to eat, hang out with my boyfriend, be on the computer, see a movie
Read a book, clean my room, go shopping, see a Rockie's game!
18. On bad days I:
sit on the couch in my PJ’s and watch TV or wishing I could sleep.
Eat and Sleep
19. The Most frustrating part is:
Many people think i’m faking it because I don’t know how to explain CFS. Its also frustrating 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.
Being well enough to clean and walk around the house but not well enough to exercise or go to the park
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.
I'm still tired in someway and my energy level is never where it was back when I was healthy
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…
Life is NOT supposed to be like this and it drives me crazy that I have to deal with this. why me? I hope nobody else in my family ever had to deal with this because it sucks. Hopefully, the increased flourinef, extra salt, liters of water, and bottles of Gatorade will do its job!
1. My illness is called: Chronic Fatigue Syndrome (cfs) or myalgic encephalomyelitis (ME)
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 constant 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.
School, I stopped going to school in about mid-October and was homebound all second semester but never finished that .25 credit I had been working on for American history.
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.
That it must be nice to have time to sleep all day and drink Gatorade all day... Honestly, i never want to drink Gatorade again and if only I COULD sleep, its not a luxury anymore
5. The hardest part of mornings:
is the getting up part. usually when i get out of bed everything starts spinning or goes black.
It's still getting up. having the energy to finally accept that I'm not getting anymore sleep!
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.
additionally I've seen another neurologist and physical therapist and some doctor who was filling in for my pediatrician who thought I was full of crap
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!
Netflix. It's my life! Facebook is no longer fun to look at because I see everyone having a life. I guess most people wouldn't know how to be around a sick person but very few friends have called or even texted to see how I'm doing.
8. The hardest part about nights:
not being able to sleep but being exhausted.
Getting to sleep.
9. Today I’m feeling:
alright, no major headache just EXTREMELY tired.
Way better than I was in October. I'm tired from cleaning earlier but at least I have the energy to clean...
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.
Still the same because people thinking I'm faking it is the worst.
11. The hardest part to accept is:
that this isn’t going away any time soon.
That I'm not finishing high school. This would be my senior year and thinking about it makes me really sad. Gymnastics, graduation and prom were the big things and I know I still have the option to finish, but the good things outweigh the things I'm missing.
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.
GED
13. People would be surprised to know:
I like painting my nails still but i’m very impatient with them drying.
What does painting my nails have to do with CFS..? Anyways, people would be surprised to know how many other people suffer from CFS. I've talked to a few other kids who didn't know about it and most likely have it. LOOK ABOVE PEOPLE! the numbers above speak for themselves!
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.
School, I miss it even though it sucked. I never noticed how much energy it takes to go, listen, understand, and walk from class to class.
15. Things I’ve had to give up:
gymnastics, school, anything involving standing
I'm capable of doing activities in my wheelchair now! But I've had to give up activities with friends
16. New hobbies:
Well I’m not sure yet but something crafty :)
I started making earrings! My friend came over one day and showed me how and I've made them for fundraisers and as gifts. the other day I was at my moms training and people kept coming up to me and commenting on how pretty they were so I decided to sell them! It was fun.
17. On good days I can:
Go out to eat, hang out with my boyfriend, be on the computer, see a movie
Read a book, clean my room, go shopping, see a Rockie's game!
18. On bad days I:
sit on the couch in my PJ’s and watch TV or wishing I could sleep.
Eat and Sleep
19. The Most frustrating part is:
Many people think i’m faking it because I don’t know how to explain CFS. Its also frustrating 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.
Being well enough to clean and walk around the house but not well enough to exercise or go to the park
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.
I'm still tired in someway and my energy level is never where it was back when I was healthy
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…
Life is NOT supposed to be like this and it drives me crazy that I have to deal with this. why me? I hope nobody else in my family ever had to deal with this because it sucks. Hopefully, the increased flourinef, extra salt, liters of water, and bottles of Gatorade will do its job!
Sunday, May 13, 2012
Lala Land!
Everyone knows that feeling when you can't remember something and it bugs you like crazy until you remember. Lately my brain fog (or cognitive problems my mom said I should call it) has increased and I have to strain to remember what I ate for breakfast. I always assume I'll remember things and think, "Na i don't have to write it down, I'll remember." Even right now I can't exactly remember what I wanted to say even though I know there was something... I think my brain says, "La la la" more than anything. WELCOME TO LALA LAND! thats where my brain is! haha and trust me I'm not acting it because it drives me crazy! now what was I saying?
Adjusting to life with CFS is quite difficult. At first when my doctor told me I had CFS I didn't really take it seriously. Yeah right, Chronic Fatigue? Headaches, migraines, dizziness, nausea, insomnia, muscle pains, othrostatic intolerence, irritation of light and sound, anxiety, bloating, random aches, weight gain, brain "fog", tiredness of course, and so many other things to deal with. With CFS, you have to try five times harder to get out of bed, to get lunch, do to pretty much any activity at all. Its really hard for people to understand because when i do go out I look normal. Several meds, 2 liters of water, disgusting electrolyte filled powerade, and half my energy is what gets me out of the house. Oh and totally random but apparently my hyper-moblitly plays a part in it too! Something about adreneline and flexibily.. but according to my PT I just need to strengthen my core and all problems will be solved! Lovely right? :) ha.
I don't like getting on Facebook anymore because its like while my life has been put on hold, everyone else continued. Its like I lost the remote to my life, the control, and unfortunately I'm on pause. I like planning things so not knowing whats next drives me insane. I know that I'm most likely not returning to high school next year but instead I'll get my GED and get on with life. Why waste time and energy that I don't have trying to graduate. There is no way I'd be able to graduate may 2013 unless i had a miraculous recovery and became a super child over night. I don't know when that will happen though because like i said, its hard to remember or concentrate at this point. I hate the things I will miss like graduation and senior year, but at this point I really just want to get on with it.
Remembering Life without being sick is like watching a whole different person. That girl could go 90 mile per hour all week long and recover quickly on the weekends. Now I go maybe 15 mph? strange comparison but its true; My body is completely different now. I remember the feeling of being able to do whatever I wanted. I could do things I didn't necessarily want to do, but the point is that I could do them. I know I have good days where I'm able to go out; the lovely days of freedom! Most of the times I've gone out I've been in my wheelchair and I get the what-the-heck-is-she-doing-in-a-wheelchair look. Every time I've seen people I know I'm not in my wheelchair and so they look confused because I'm suposed to be so sick I can't go to school. Ahhh! I swear I'm sick but if you want an explaination you have to read my blog!!
Sorry if my thoughts seemed a bit scattered... focus issues and the la la la-ing in my head distracts me :) Oh and Happy mother's day to all the Moms out there! espcially my mom who helps me deal with having CFS. She's wonderful and keeps me going every day!
Adjusting to life with CFS is quite difficult. At first when my doctor told me I had CFS I didn't really take it seriously. Yeah right, Chronic Fatigue? Headaches, migraines, dizziness, nausea, insomnia, muscle pains, othrostatic intolerence, irritation of light and sound, anxiety, bloating, random aches, weight gain, brain "fog", tiredness of course, and so many other things to deal with. With CFS, you have to try five times harder to get out of bed, to get lunch, do to pretty much any activity at all. Its really hard for people to understand because when i do go out I look normal. Several meds, 2 liters of water, disgusting electrolyte filled powerade, and half my energy is what gets me out of the house. Oh and totally random but apparently my hyper-moblitly plays a part in it too! Something about adreneline and flexibily.. but according to my PT I just need to strengthen my core and all problems will be solved! Lovely right? :) ha.
I don't like getting on Facebook anymore because its like while my life has been put on hold, everyone else continued. Its like I lost the remote to my life, the control, and unfortunately I'm on pause. I like planning things so not knowing whats next drives me insane. I know that I'm most likely not returning to high school next year but instead I'll get my GED and get on with life. Why waste time and energy that I don't have trying to graduate. There is no way I'd be able to graduate may 2013 unless i had a miraculous recovery and became a super child over night. I don't know when that will happen though because like i said, its hard to remember or concentrate at this point. I hate the things I will miss like graduation and senior year, but at this point I really just want to get on with it.
Remembering Life without being sick is like watching a whole different person. That girl could go 90 mile per hour all week long and recover quickly on the weekends. Now I go maybe 15 mph? strange comparison but its true; My body is completely different now. I remember the feeling of being able to do whatever I wanted. I could do things I didn't necessarily want to do, but the point is that I could do them. I know I have good days where I'm able to go out; the lovely days of freedom! Most of the times I've gone out I've been in my wheelchair and I get the what-the-heck-is-she-doing-in-a-wheelchair look. Every time I've seen people I know I'm not in my wheelchair and so they look confused because I'm suposed to be so sick I can't go to school. Ahhh! I swear I'm sick but if you want an explaination you have to read my blog!!
Sorry if my thoughts seemed a bit scattered... focus issues and the la la la-ing in my head distracts me :) Oh and Happy mother's day to all the Moms out there! espcially my mom who helps me deal with having CFS. She's wonderful and keeps me going every day!
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