MissUnderstoodSpoonie

Never let my invisible chronic illnesses define me, they only make me stronger 💪 #SLE #EDS #POTS #MCAS #PMDD #Depression #Anxiety #NDPH #HCC

[Overstretched Mum @SoOverstretched]

Is there such a thing as a #chronicfatigue or #chronicillness cook book? Meals that are healthy but minimal effort? With minimum standing or chopping, can be prepared in advance and suit allergies? Does a thing like this exist?

[MissUnderstoodSpoonie @MissSpoonie]

@ZebraOrphans Dislocating or subluxing my toes while walking... 😅

[Sam Bosworth ♿ @_SamBosworth]

I'm in the most pain I've been in for a while and I STILL find myself questioning if I need to take extra meds, or if it's OK to spend all day in bed. Even people who advocate for disability every single day still deal with internalised ableism. Don't be so hard on yourself.

[Laura’s Pen @lauras_pen]

Types of fatigue. ADD YOUR OWN

-I need a nap so I have energy to get myself lunch

- My brain has forgotten how words work

-I did a thing three days ago and my body is in recovery mode

-Its 5am and I'm wide awake even though I'm friggin exhausted

#WaysImTired

[MissUnderstoodSpoonie @MissSpoonie]

@gingko_trees Every single time I use mine I get looks 💙

[Sam Bosworth ♿ @_SamBosworth]

You're allowed to be mad, disappointed, upset, frustrated and anything else, at your doctors. You're allowed to want a second opinion. You're allowed to ask questions. They aren't ALWAYS right and you deserve to find answers you're looking for.

[Ola Ojewumi @Olas_Truth]

It's okay to not be comfortable with your disability or identifying as disabled just yet. We all go through our own process of denial, bargaining, negotiating, and eventual acceptance.

We don't all make it to the acceptance stage but it takes time.

[MissUnderstoodSpoonie @MissSpoonie]

@hatttiegladwell Congratulations! So happy for you and your growing little love 😀💙❤

[Sam Bosworth ♿ @_SamBosworth]

You don't need an official diagnosis to be a part of the disabled community. It took me 23 years to get my diagnosis and I wish I had discovered the online community well before then. You are valid and deserve to be a part of the conversation with or without an official diagnosis

[Lupus Solution @LupusSolution]

SLE is one of several diseases known as "the great imitators" because it often mimics or is mistaken for other illnesses.

[MissUnderstoodSpoonie @MissSpoonie]

@Daina_Ella Beautiful! It frames your face perfectly!

[MissUnderstoodSpoonie @MissSpoonie]

@Daina_Ella Thought you would enjoy it 😁 I hope you are feeling better 💙

[Sam Bosworth ♿ @_SamBosworth]

Being young and disabled is pulling into a disabled parking space, pulling out your card/plaque as fast as possible and preparing yourself for stares and possible confrontation from Doctor Karen's and had-a-broken-leg-once Kyles.

[MissUnderstoodSpoonie @MissSpoonie]

@Daina_Ella 💙💜❤

[David Radcliff @DavidRadcliff]

Nita, the reporter who followed me around LA, just started a hashtag called #safesidewalksLA, where people can share photos of sidewalk sections that have fallen into disrepair.

I never thought I'd be so grateful to have fallen over in very public view.

[Ola Ojewumi @Olas_Truth]

Disabled women in relationships: did you meet your partner before you became disabled or afterward?

This actually makes a big difference in these conversations.

[MissUnderstoodSpoonie @MissSpoonie]

... craziness 💙

#spoonie #chronicillness
#Dysautonomia #invisibleillness #brainpain #EhlersDanlosSyndrome #lupus #MCAS #pmdd #NDPH #surviving

[MissUnderstoodSpoonie @MissSpoonie]

Today is the 'SUCK-u-versary' of the day I fell ill 14 y ago. I sit here, trying to grasp the fact that, I have been living & surviving with my health challenges for over half of my lifetime. Mindblowing 🧠💥 Thank you to my support system for putting up with the ever changing 1/