ddailyspoonie-blog reblogged
ddailyspoonie-blog reblogged
Most college students spend their weekends partying and hanging out with friends. I spend my weekends recovering from going to classes for five days.
ddailyspoonie-blog reblogged
Spoonie Poem
Symptom 1 and Symptom 2,
This one’s old, that one’s new.
I thought my body was mine to rule
But it looks like I’m again the fool.
One thing goes wrong after another,
And I’m left attached, feeling smothered.
Brought to my knees again tonight,
Crying, aching, giving up the fight.
If I could sleep it might improve,
But late at night I cannot snooze.
Spoonie life is hard to take,
I may bend but I’ll…
ddailyspoonie-blog reblogged
cfs-anonymous
Something I wish my friends would be aware of when we're out...
When I’m out with you… I may look and act like this:
But inwardly I’m like this:
(because sometimes I don’t want to be the ‘ill’ person. I just want to pretend to be happy and ‘normal’)
ddailyspoonie-blog reblogged
A Classic Spoonie Verbal Transaction
Doctor: *shakes your hand* How are you today?
Me: um, I'm okay...
Doctor: Great! I'll see you next time!
Me: um... no, i said i was okay because that is a thing people say to the question; how are you? if you had asked me; has your chronic fatigue improved lately? is there any change in your levels of pain? are you more or less nauseous than normal?
Lesson learned ( for today )
It has been tough, Wednesday I woke up with extreme fatigue and stiffness, but I pushed through it. I went to school with my electric bicycle. I went for four hours, like every day because I have adjusted it together with my school ( thanks to them, they help me wherever they can. ) I wasn't feeling any better, neither feeling worse. I made it through these four hours. I felt okay, but so relieved I was able to go home. When I was on my way home, the pain hit me. My muscles felt weak and I wasn't able to keep my hands on the bike without having cramps and losing strength. My legs barely were able to make movement, but I got home. I said I would just take 30minutes rest, and I'd feel better again. But hours past, and when dinner came, I realized I've never been on this bad side before. I'm a new spoonie, recently diagnosed, never had this feeling so badly before. But I could not move. I could not raise my fork neither get it close to my mouth. It took me two whole hours to finish my dinner. My food was cold, and I was done with the world for that moment. I sat on my couch ( which luckily has a place to lie down on so I kind of lied down ) and I could not move. My body hurts. Fatigue hasn't been like this before. Pain hasn't either. Again, hours past, and it was time for me to sleep. I need a strict 9-12 hours sleep on a night to have enough energy the next day. I was sleepless. There was not a single chance I could fall asleep. My pain got me bawling my eyes out, I have never cried so hard as I did Wednesday. I couldn't talk to anyone about it, I wasn't able to even speak anymore. And here I am, next day, less pain and less fatigue, yet not able to get out my bed now. I've learned my lesson I guess. I am proud of everyone who has been through a day like mine, because that day needs so much mental and physical strength.
ddailyspoonie-blog reblogged
When Drs Keep Mentioning Diet And Exercise...
ddailyspoonie-blog reblogged
The tricky part...
Yes, my illness is serious and debilitating. But treat me like a normal person in social situations. But don’t expect too much, but don’t shy away from inviting me to things.
But don’t forget I’m always in pain. But I really can have fun in my own ways.
Unless it’s a flare day and then nothing is possible but rest.
Understand I have limits that I am not in control of and they change daily and are unpredictable.
I know you’re confused because I’m confused.
But we can get through this together and I’m open to explaining what I can when needed.