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Who is she? A poem about being diagnosed and living with a chronic illness

Who is she?

I look at her from across the room
She’s familiar to me, like I’ve met her before
But who is she, how do I know her?
I must be mistaken, I turn for the door

I stop, glance back once more
Her eyes say “I’m sorry”, she apologetically smiles
But who is she, how do I know her?
I’m sure I’ve known her a while

She whispers “you’ll make it through”
She knows the hurt in my core
But who is she, how do I know her?
I remember…she cradles me crying on the floor

This woman has hurt me, taken away my dreams

Why I no longer wish upon stars, have so many hidden scars

This woman has caused grief, taken away my hope

Why I can’t live, just survive, why every day I cry

I look back once more
Tears fill my eyes
But who is she, how do I know her?
It was me - a woman I no longer recognise


Drawing by Sinead Lawless “Portrait of a Patient”

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What's up with this chronic nose inflammation?

Hey all, Ive been having inner nose inflammation for at least 3 months, its worse in the right. I do have chronic sinus issues,but never this. You just look up my nose and the tissue is red. It hurts and has caused nosebleeds at times. I've been to the ENT and they gave me a steroid nasal rinse and ointment. It helped some but didn't go away. I was kinda peeved they weren't trying antibiotics, which i know...i know all about them. It feels raw in these areas and can be pretty painful, cause headaches. I have to go back but am not happy with the treatment plan as I cannot take oral steroids, but that is all they offered. Not sure what to do..just really lost and frustrated. I've had nasal issues over half my life and never had this. I know its not covid, ive been tested. Im on an allergy shot, i take meds, nose rinses, flonase etc. I don't get it at all and not getting much help.#chronicdisease #ChronicIllness #SinusInfection #ent #Inflammation #RareDisease #ChronicPain #nosebleed #Undiagnosed #Upallnight #AutoimmuneDisorder #AutoimmuneDisease #Anxiety #Fibromyalgia #Migraine #nosepain

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How do people deal with uncertain episodes of any disease?

I’ve got a few issues. My chronic pain or fibromyalgia, my anxiety (and panic attacks), my PTSD that sometimes pops up, out of nowhere, and of course the fatigue that its accompanied with. And those are all things I understand, and usually know the cause of. Even the tears that sometimes spontaneously run down my cheek are okay(-ish).

No, the thing I’m really dealing with right now is my FND (Functional Neurological Disorder). It’s also called Conversion Disorder, and basically means that there is a problem between the brain and the bodypart that should do something. In my case my left leg that doesn’t move, or sometimes shakes a little, without control. Since last year it comes and goes, seemingly out of nowhere. And when it comes, I’m stuck (because I can’t move my left leg). It’s inconvenient, and I don’t know how to deal with it, yet. Some days I wish I had something to be mobile again, or the strange desire that it was permanent (which I’m glad it’s not).

An FND-episode can be for 5 minutes, or 3 hours, and everything in between. It can be in bed, when I wake up, when I rest, or try to go to sleep. It can happen on the couch, or on my chair behind my laptop. It has happened a few times outside (I’ve missed my bus a couple of times, because I wasn’t able to walk the 10 meters to the bus).I had ones an episode in a grocery store, and of course people had to get to things, which made me walk anyway with a strange foot behind me. For some reason I can stay pretty calm at those moments (I learned that it’s not permanent, that I’m not in danger, and that physically nothing is broken in my body. But at the same time I mourn, because I can’t control it, it seems to control me.

I’ve got a foldable cane in my jacket, that helps when I’m tired, and it gives me the confidence to go outside. But sometimes I wish for better stuff, or more mobility. And in the meantime I beat myself up that I’m not ill enough to ask for a walker or a wheelchair to use parttime. It’s not that I have a problem with the device or it’s users, there is no ableism in it. I’m afraid that I’m not worthy of it.

I was just wondering: how do other people deal with uncertain episodes of any disease? Do you avoid things? Do you prepare?

#CheckInWithMe #FunctionalNeurologicalDisorder #Fibromyalgia #Cane #Wheelchair #Anxiety #chronicdisease #ChronicPain #RareDisease


Feeling desperate

I don’t think I can make it through another day. My heart is broken. My brain is not working well. I feel so unloved and the pain is too much to bear. There is no one I can turn to. I feel so overwhelmed and I wanted to share. #Depression #Anxiety #unloved #Lupus #AutonomicNeuropathy #lonely #chronicdisease #alone

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The Way Of Survival By Mica Warsop.

This is a poem I created due to my own history. I was born with illness into a dysfunctional family... There's a lot of emotional truama & painful memories as well as physical health issues & limitations. My mother passed from stage 4 brain cancer & survived 15 months not being able to speak & she was a deep, loud speaker, this is also for her spirit & all of us who are spiritually surviving with the pure strength of having your experience in your own life, ❤️

I have to keep the faith in myself to be able to have the desire to survive my world. I hope & prey this helps anyone like it is has helped myself. I know we all have our individual struggles.. no one knows each others but we are here as a collective to support, learn, try to relate & admit we haven't been through it but can still encourage, care & support... in my opinion, anyway😅 ❤️ if you find this harmful in anyway please leave a comment & I will remove it. That is not my intention. ❤️
#ChronicPain #emotionalillness #SurvivingWhileSuffering #MentalHealth #InvisibleDisability #InvisibleIllness #physicalillness #Depression #Anxiety #mentaldisorders #ChronicIllness #Undiagnosed autoimmune disease #AutoimmuneDisease #AllIllhealth #chronicdisease #TerminalCancer #allillnesses #Cancer #lifelongconditions #CPTSD #PTSD #WishICouldListThemAll