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Community Voices

Interest in a podcast specifically for people with chronic illness and/or disability?

Hi all,

I'm brand new here, trying this out for the first time. I'm working on putting together a podcast made by and for people living which chronic illness and/or disability. The goal is to share real stories of how people adapt to their new lives, challenges they've faced, what they've learned, how they cope, and also interviewing professionals who work with people with chronic pain. This is specifically for people who used to live "normal" lives, but had to completely change their lives due to medical issue or trauma. The focus is not on any specific condition, but about how we deal with them.

Does this sound like something appealing to you? What topics would you like to see covered in this podcast? What would be most helpful for you? Also anyone good with computers interested in helping to create the podcast, please send me a message! #neisvoid #disabilitysupport #Spoonies #reimaginelife2 #Chronicpainwarrior

1 person is talking about this
Community Voices

Spoon Theory and My Pandemic Pickle

<p>Spoon Theory and My Pandemic Pickle</p>
3 people are talking about this
Community Voices

We can do this!!!

Filling my weekly med boxes can be confusing at times….I’m always messing up and saying “What the f*ck!”
This morning I was staring at it, overwhelmed. I’m thinking “Hope I don’t screw it up this time” and suddenly my warped brain came up with a sentence that goes along with the days of the week:
S poonies
M aster
T he
W hat
T he
F *ck
We truly do figure out a way to master all the WTF’s in life my friends! Every time I do my meds now, I will look at it with renewed confidence and I’ll master it! 🙌 Decide what you’re going to master and share it with me, I’d love to hear!
#meds #wtf #Spoonies #Confidence

4 people are talking about this
Community Voices

when no one listens #Spoonies #medicalgaslighting

This the only place that maybe someone will listen to me. I am so tired and not the sleep tired. Just bone weary were no matter how much sleep you get it's not enough. Were you live on caffine because you have to be perfect. What am I kidding i will never be perfect.

So anyways I went to my follow up from my MRI and there's nothing wrong Just lose weight and go to PT and OT because that will help you to fill out paper work and everything else. But I am tired of everytime I go to the dr it's a wase of time. Have a zoom appointment today and know it will be another wase of time. To add DBT to my list of stuff that will not help. Who am I kidding none of this will work because I am not worth anyone time.

I literally alone. Can't go to anyone because there's nothing wrong with me. Oh well.

1 person is talking about this
Community Voices

Celebrate with me!

I thought this day would be very discouraging because I was not feeling well enough to go to church (highlight of my week). I was wrong. I'm celebrating all the things I COULD do today. I chopped vegetables for lunch & dinner, ate lunch BY MYSELF, unloaded the dishwasher, loaded it, hand washed 6 dishes over the course of the day, and even cooked most of dinner. I was even able to eat all my dinner without having to lay down. Only my fellow #Spoonies can understand how great a celebration this deserves.
#MyalgicEncephalomyelitis #MECFS #CFS #InvisibleIllness #celebrate #Fibromyalgia #positive #encouragement

1 person is talking about this
Community Voices

Taking Cymbalta for fibromyalgia, but having a lot of debilitating fatigue because of it!

<p>Taking Cymbalta for <a href="https://themighty.com/topic/fibromyalgia/?label=fibromyalgia" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7f00553f33fe992ab1" data-name="fibromyalgia" title="fibromyalgia" target="_blank">fibromyalgia</a>, but having a lot of debilitating fatigue because of it!</p>
8 people are talking about this
Community Voices

Giving myself the finger

<p>Giving myself the finger</p>
Community Voices

Spoonie Agenda

<p>Spoonie Agenda</p>
9 people are talking about this
Community Voices

Methotrexate Hangover #Methotrexate #RheumatoidArthritis

Hey #Spoonies !
I’ve been taking methotrexate for a few months now and it SUCKS. The list of side effects are as long as my arm and take me out of commission for a day or two. So I thought I’d make a playlist of songs to listen to when I can’t focus/hurt too much to function. I am curious! What are your go-to songs when you feel like shit??

3 people are talking about this
Community Voices

Are You A Gardener?

<p>Are You A Gardener?</p>
5 people are talking about this