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!
