I hope everyone had an alright day, or is about to have a good day!
I took a long test today, and I’m pretty much knocked out. My mind is burned out, and I need to rest for a bit!
Oh, and I’m thinking I should invest in some new comfy clothing since hanging out in dresses all the time like I used to is just not quite as practical. I’m thinking some cute yoga pants, and comfy oversized t-shirts.
Fellow tumblr chronic illness sufferers, this one’s for you.
“Be calm. I know you feel like you are breaking down. I know that it gets so hard sometimes, Be calm. Take it from me, I’ve been there a thousand times. You hate your pulse because it thinks you’re still alive and everything’s wrong It just gets so hard sometimes Be calm.”
I hate doctors so much, it is so clearly a real disorder, I dont make my self pass out from the dizzy spells, or vomit from the nausea, or fall asleep in class on purpose. It is so clear, when will they open their eyes? This isn’t in our heads.
I agree completely. Money shouldn’t be spent on trying to make this seem like it’s a psychological illness. Money should be spent to find the root PHYSICAL cause.
Okay… where do I even begin with my commentary on this study… First of all the name of this program made me laugh: Fatigue in Teenagers on the interNET(FITNET)
That is the lamest name. Off the bat I knew I wasn’t going to enjoy this.
WE’RE JUST A BUNCH OF TIRED TEENS ON THE INTERWEBZ. LOLOL.
No… no no no! If this group or program was really trying to help out those with ME/CFS, you’d think they’d pick a better name.
“Typically, treatment involves (a) formulation of treatment goals, (b) establishing a sleep routine, (c) encouraging the participant to achieve a balance between activity and rest, (d) gradually increasing activities including home, social and school life, (e) addressing cognitions about fatigue, (f) gaining independence from surroundings and parents, (g) reducing the focus on fatigue, and (h) paying attention to relapse prevention.”
Why does this bother me? It bothers me that pediatricians are going to see this study and automatically shoo us away to cognitive behavioral therapy! As if we don’t get that enough as it is.
“63% of adolescents reported having recovered after 6 months, almost 8 times as many as those given standard care.”
I’d love to talk to these adolescents, seriously. I know so many CFS/ME adolescents just on Tumblr that struggle beyond belief. Most if not all, have said that psychological treatment was not that helpful! I’m absolutely not saying that it’s wrong if this new online based therapy helps some sufferers cope with this illness, but I hate the fact that many doctors will see this study and jump to the conclusion that therapy is the cure-all for ME! It’s not.
Therapy is not the cure for most of the teens I’ve chatted with. Infact, the only kind of therapy that seems to be helpful for all of us is to talk to each other about how much we HATE doctors, and how much we wish the medical community would take this seriously as a neurological disorder.
I’m probably going to receive some kind of backlash for this, but I felt like I needed to speak up for the adolescents here on tumblr with ME/CFS. This is the general feeling among us all. We want NEUROLOGICAL answers.
I did not sleep a wink last night.
Oh and guess what? I am probably going to withdraw from all my classes for now (I’m in my second semester of 12th grade!!!) to focus on my health.
Do you know how much that sucks? To be so close to the finish line only to have to slow down?
Ugh. Seriously screw me/CFS. I’ll graduate eventually just not in May like I had planned. ): stupid brain fog ruined everything.
A part in your brain called the hypothalamus turns a switch off in your body causing chronic fatigue syndrome, fibro, and just makes you feel terrible. A virus, hormonal imbalance ect, puts too much stress on your body. The body actually does this to protect its self from more or less “blowing a fuse” because it can’t physically deal with the problem and fully operate. If we didn’t have this fuse switch mechanism we would all likely be dead.
I’ve seen a lot of people making posts about taking charge and being optimist lately. I just wanted to say that I’m really proud of all of you. It isn’t easy and anyone dealing with all of this knows that.
I hope I can be a source to help you with your transition to better days :)
Today was exhausting. Basically I went to the cardiologist (for POTS) only to be told I “look healthy” and I shouldn’t be concerned about my heart rate by this younger doctor.
He said it was just neurocardiogenic syncope blah blah and that I’ll likely grow out of it. He seemed taken aback at my medical terminology. Yeah I said extremities, let’s go flip the heck out young doctor. Got my midodrine prescription and went on my merry way to Target where I helped my mom shop!
Of course I became sweaty,clammy, and flushed red because I was overheating. Then of course I had to help bring up groceries and put them away and now my body has crashed. I know for a fact I’ll have bad post exertional malaise tomorrow. I don’t even doubt it one bit.
So here I am in bed. Exhausted does not even begin to describe how I feel right now. Yep. That’s it everyone. Hope you’re all having better days!
Hey everyone this is Lizzie, you probably have seen my posts from alittleanonymity-please.tumblr.com
I created this blog in order to help out fellow CFS/ME people, and also to help spread awareness. I’ll still post occasional CFS/ME related things on my personal blog, but for the most part I will try to keep that on this blog. If you have any ideas, or want to contribute towards this blog, message me and let me know! :D
My mom posts here, when I’m not feeling well. She’s a bit of a Tumblr newbie, so bear with me. Still need to show her the ropes. Anyway, I want to say hi to followers I have, and hopefully I will be getting some more soon!