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#cfs – @ddailyspoonie-blog on Tumblr

My journey as a spoonie

@ddailyspoonie-blog / ddailyspoonie-blog.tumblr.com

| A blog of someone with an invisible illness and many mental illnesses. Dedicated to all the lovely spoonies who need some inspiration and a friend to rely on. | Daily look into my life, with many relating posts. |
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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…
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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’)

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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?
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jekabeth

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.

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