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Surrounded by Ostriches

I am disabled, and I need help. I need someone to drive me to the doctor and help me keep track of medical instructions. I need someone to help with shopping, cooking and housework. I need someone who can help my kids with remote learning. I need someone who will keep track of paying my bills and ensuring my finances are in check. I need someone to do fun things with my partner and make sure his needs are met physically. I need these things not because I am lazy, privileged, apathetic, burnt out, overwhelmed, depressed, etc. I need these things because I AM SICK and physically can't do them without collapsing.

I can keep myself in a good headspace most days. Some days I falter, though, and I become a ball of overwhelming resentment and anger. All the people who surrounded me when I was able to function have disappeared. Family, friends, coworkers - everyone just vanished. I think they're just "waiting it out" as though I'm going to get well again miraculously and they'll be able to rejoin my life and pick up where they left off without having to acknowledge the ickiness of me being unwell.

The public seems to think that there are these great doctors, laws, and social systems in place to help people like me. Here's a big newsflash: there aren't. There are illusions of such things - and if you have help from a disability attorney, social worker, or other tenacious advocate you may be lucky enough to jump through all the necessary hoops to qualify - but a wonderful world of easy access to decent medical care, transportation, financial assistance, empathy, etc. does not exist for the disabled in the U.S.

So, I'm having a pity party moment. The list of things I need help with in my first paragraph gets longer every day, and help is not coming. My son is failing reading. Some nights we eat cereal for dinner. The house is messy. Our cupboards contain nothing but snack foods and things you can easily heat up. I am internally SCREAMING because these are all things that need attention, but my body literally does not have the energy to handle basic tasks...and the kids and my partner can only do so much.

I'm not angry about being disabled - it's no one's fault. It's not the result of some terrible accident or medical malpractice. It's not something I brought on myself with an unhealthy diet or lack of exercise. I have no one and nothing to blame for this. I was functioning at a million miles a minute, got sick, and that was that.

I just wish society, friends and family would acknowledge that I am the same person I was before and I still deserve to EXIST despite the fact that I am no longer as productive as I once was. Instead, I live in a bubble neatly hidden away from the sensitive eyes of the rest of the world who don't want to be faced with the fact that they, too, can get sick without warning. I am surrounded by ostriches.

#cfsmeawareness #MyalgicEncephalomyelitis #CFIDS

1 comment

I realized I’m a compulsive overeater i emotionally eat and feel awful afterwards I should never have eaten 6 teaspoons of almond butter bc now I feel

Like crap about myself I’ve gained weight not happy. Who will support and help me be my fitness buddy I feel like no one understands the emotional pain I’m in and that’s most likely why I overeat. I need help and I’m going to start zoom oa meetings. Who understands and will help me? #ObsessiveCompulsiveDisorder #BingeEatingDisorder #PTSD #CPTSD #CPTSDinrelationships #CheckInWithMe #MightyQuestions #TheMightyTakeaway #TheMighty #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Exercise #diet #EatingHealthy #Bipolar1Disorder #BorderlinePersonalityDisorder #BorderlineStigma #sad #Anxiety #GeneralizedAnxietyDisorder #GastroesophagealRefluxDisease #PolycysticOvarySyndrome #COVID19 #foodaddict #lonely #Upallnight #MyalgicEncephalomyelitis #CFIDS #Fibromyaliga #Fibromyalgia #FibromyalgiaAwarenessDay #OCDAwarenessWeek #Depression #DepressiveDisorders

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any fibro/cfids folks having a hard time with symptoms? #Fibro #CFIDS #ChronicIllness #corvid

like most fibro and cfid folks I always have a myriad of symptoms. I’d been fighting some kind of cold flu thing for weeks but I’m also in a relapse - 11months. I’ve had a sore throat a while. Breathing issues due to drug combos. and lack of sleep due to horrible people who live above me. usually run low temp- dropped a bit yesterday. given that I am suffering so much I try to take most of it in stride and keep believing God will make a way for me to have peace. now I’ve gotten much worse since a run to get groceries yesterday. I worse mask and gloves - and took the stare downs but I was trying to be responsible. today is no joke the pain and smattering of all the symptoms with a lot of ache pain flu-like. how do I know what’s my normal in this. my inner ear hurts- but I tried to use earplugs so I could have some sleep from the crazies above me. but the ache goes deep. I have a headache for days but I’ve been really stressed. my cat showing strange extra lethargic attached to me at the hip more than usual has me concerned. all this and I still need to get gallons water somehow. our tap not very healthy. anyone advice. I’m usually the best in these situations bc of all I’ve been thru but rn I am feeling over my head. guidance? personal experience? folks in relapses or with these conditions that have the virus or thought they did but just more run down??? thank you. stay mighty 💪🌈💜 #Confusion #Fibromyalgia #Relapse #CFIDS/Cfs/me #corvid -19 #pethealth #knowledge #Hope


anyone have a concussion bring on. severe fibro flair? #Fibromyalgia #ChronicFatigue #TraumaticBrainInjury #Anxiety #Depression

concussion Sunday night. checked out on Tuesday. but by Monday I was feeling weird - I’m already in a cfids relapse and now it feels like a Fibro relapse on top and then the concussion. the pain the fatigue beyond beyond. my arms are in so much pain and so weak. I can’t do anything. my legs have that ache. my head of course is killing me. concentration not possible - hurts to think. I’m an over thinker always in my head and this is causing so much anxiety. the only time I feel like I’m Maybe gonna get through is when I take a klonopin. I’m really isolated - not a single text from any “friends” ie ppl I work with. and my joke of a mother sent me a text yesterday asking me to do research for her on therapists smh. I have horrible stompers above me who have made recovery feel nightmareish - meanwhile so much is going wrong and I’m so overwhelmed and stressed out. I’m trying to stay in faith with this but it’s hard to even concentrate on god or prayers. I find myself getting caught up in thinking and making symptoms worse. I also keep having awful dreams that are draining and make me feel anxiety upon waking.

I really feel like this caused a severe fibro episode. and maybe kick-started my crazy relapse again? or is this just really all from concussion? #CFIDS #Fibro #Concussion #Anxiety #Fatigue #weakness #Pain


something fell on my head - hurts & I’m extremely tired

there was a lot of blood I stopped it - last night. I’ve been extremely tired just read can be caused from tbi
I also have cfids

I’ve had multiple concussions in the past and have suffered brain injury

rn just want to know what to watch for
I am in a relapse but this fatigue and weakness seems extra extra

not sure what I’m even asking - anyone?
many demands on me this week and next - no extra rest time, bad sleep usually

hungrier than usual. also sick to my stomach feeling

thank you #TraumaticBrainInjury #CFIDS #Relapse #Fibromyalgia #Dizziness #Fatigue #MyalgicEncephalomyelitis #Anxiety #Depression #alone

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I BELIEVE this will help get me through this day #Anxiety #Depression #Relapse #Fibromyalgia #CFIDS #MyalgicEncephalomyelitis

An hour late for work, appt after I can’t miss to make up my time. Couldn’t shower. My pits smel. So much pain. Could barley move from the bed. Problems. Pain. Severe Fatigue. Anxiety. Clumsy. Confused. Hungry.
Holding onto God for my hope. I have to believe. I have to trust. He can when I cannot.

Sharing a verse that really spoke to me this morning. Will try to go back to it throughout the day. I will choose to try to believe it. Hard to believe good can happen when you swim in a sea of sadness and struggle, but this is my choice. The Holy Spirit help me now in Gods will. God Bless all my sisters and suffering brothers on this site this day. God loves you (telling myself that too when I say it to you😅) #Gettingthroughtheday . 🙌😘


Anyone else CFIDS/FMS who has relapses?

#CheckInWithMe #CFIDS #Fibromyalgia #PMDD

It was a flare up for a month. I tried to keep it from turning into a relapse. I failed. The diabolical fatigue on top of the already impossible fatigue. Plus all the other symptoms that have blown up.

No one talks about relapses - only flares. Non- mighties ask me what kind of flare. Doctors don’t seem to understand what it even means. Anyone? Very much alone in this. I’m also in a PMDD cycle. So everything is beyond extra. I snapped at two ppl at work today. And I just want to go home and drink and smoke. I hate myself. And I hate most ppl.


The bad days #Fibromyalgia #CFIDS #ChronicFatigueImmuneDeficiencyDisorder

Like weights are holding down my arms. Can’t walk yet because the pain and stiffness. Typing this on my phone sends pain up my entire is propped because it’s too heavy to hold. And can feel a chest infection coming. These are the days I never talk about but I am fighting through it with one finger to write this because I don’t want other people to think they’re alone. It can be insane how much it can paralyze you but I want to send my love to you all because I know it’s hard and sometimes it is beyond explaining but we are strong and we fight everyday. The soul is we’re reading strength abides. 🌹🙏🏼❤️ #StayStrong #Takeheart #Stillhavelotsoflovetosend #Nospoonstoday 😉🤦🏻‍♀️ #Canstillsmile