chronic fatigue immune deficiency disorder

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I need some advice

Hi, I am a senior in high school. I have been struggling lately with my teachers. Since I have school anxiety when I am late or if I miss a day due to pain they assume it's anxiety and they sometimes show frustration or annoyance. I also have some learning disabilities so I need some extra help with my work. When they think that I can't hear them they make some hurtful comments which can really wear down on someone who has had to fight for themselves their whole life. Does anyone have any advice on how to help them understand or help it not wear down on me as much?
#LearningDisabilities #ChronicPain #ChronicFatigueImmuneDeficiencyDisorder   #Dysautonomia   #Anxiety   #Depression


"But You Don't Look Sick" by Mica Warsop

I say
"I'm hurting & don't have the energy."
They reply
"but you don't look sick.
Could you be more specific?"
"Yes, okay, I can't hold my own weight & collapse."
They say
"but you're not fat,
it must be mental,
seems like you just need to relax"

I hear their judgements,
hear their negative words,
just like their curious minds have rehearsed.
"What's wrong with her?
I don't see her curse,
She seems like she's just making herself worse."

Don't ever tell me I don't look sick,
it hurts so much, cuts too deep...
It's as if you've thrown me in a ditch.
I'm alone, misunderstood & misdiagnosed
They don't see my illness,
no matter how deep it goes.

The reality is they wouldn't be able to deal,
if they ever did see my pain,
because then,
they would know I'd never heal
& they'd finally realise just how
much I really feel.

The worst thing is I do have signs of the physical, but they are on my skin, in my organs & under clothing material.

Now when I hear
"but you don't look sick."
I smile whilst thinking
"It's none of your business,
you insensitive prick."

I hope all of you who deal with this can relate & smile about it.
Don't let it get you down.. talk about it with pride & bring awareness to their closed minds. ❤️🙏🏾

#ChronicPain #fibromaylgia #classicaledsdiagnosis #EDSAwareness #Misdiagnosis #StillUndiagnosed #RareDisease #InvisibleIllness #ChronicFatigueImmuneDeficiencyDisorder #profoundfatigue

1 reaction 16 comments

Just For Today - I won’t give up.

••••I learned this through supporting my friend in NA. This helps me with my chronic illness every time I want to give up.•••••

I will live through this day only. I will not brood about yesterday or obsess about tomorrow. I will not set far-reaching goals or try to overcome all of my problems at once.

I know that I can do something for 24 hours that would overwhelm me if I had to keep it up for a lifetime.

JUST FOR TODAY, I will be happy. I will not dwell on thoughts that depress me. If my mind fills with clouds, I will chase them away and fill it with sunshine.

JUST FOR TODAY, I will accept what is. I will face reality. I will correct those things that I can correct and accept those I cannot.

JUST FOR TODAY, I will improve my mind. I will read something that requires effort, thought and concentration. I will not be a mental loafer.

JUST FOR TODAY, I will make a conscious effort to be agreeable. I will be kind and courteous to those who cross my path, and I'll not speak ill of others. I will improve my appearance, speak softly, and not interrupt when someone else is talking. Just for today, I will refrain from improving anybody but myself.

JUST FOR TODAY, I will do something positive to improve my health. If I'm a smoker, I'll quit. If I'm overweight, I will eat healthfully -- if only for today. And not only that, I will get off the couch and take a brisk walk, even if it's only around the block.

JUST FOR TODAY, I will gather the courage to do what is right and take the responsibility for my own actions.”

- Abigail Van Buren

#IdiopathicHypersomnia #sleepdisorder #sleepyheads #justfortoday #Narcolepsy #KleineLevinSyndrome #Anxiety #Stress #Depression #SuicidalIdeation #ChronicFatigueImmuneDeficiencyDisorder #ChronicFatigue

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Have you ever been told to “smile through” your chronic illnesses? Or that you’d feel better if you didn’t “make yourself” sick? #

#CVID #Fibromyalgia #ChronicFatigueImmuneDeficiencyDisorder #spondyloarthropathy

1 reaction 4 comments


I feel completely overwhelmed! I How have you simplified your life? What supplements or meds have helped you with inflammation and pain? What helps you when you need comfort, but only receive criticism? I am been isolating myself because I am so exhausted and do not even have energy to get to the dentist or doctor.

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Flu Season

I am taking precautions this year. Last Year I was sick with the Flu twice and Double Ear Infections. I am not doing it this year. I can’t. My body is too weak for that, id rather not end up in the ER again. I hated wearing the hospital masks. But I looked on Amazon and found this! From the Company Guoer. They have other design patterns too. This was 15 dollars. It comes with inserts. I wanted to share! #ChronicIllness #ChronicFatigueImmuneDeficiencyDisorder

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Capitol Crawl Commemorative Rally #CCCRally

On March 12, 1990, 475 people went to the #Capitol to protest for more rights for disabled. 60 of these brave people set aside the walkers, canes, crutches and wheelchairs to crawl up the Capitol steps. This widely became known as the "Capitol Crawl". Their determination and bravery led to the passing of the Americans with Disabilities Act. We return to the Capitol for additional #medicalfreedom and #qualityoflife

❓Why join us❓30 years after those selfless people fought for ADA laws, the rights of all patients, regardless of disease, ability, mobility, age, gender, race, religion, or veteran status has been infringed upon and crossed. Patients being denied access to treatment, therapies, #medications, #mobilityaides , #ServiceDogs, and a basic #quality of life.

👩‍🦼👩‍🦯👩‍🦽Who: any and all patients with rare disease, #ChronicIllness, #Disease, and recently diagnosed disease. All #Caregivers , #Family members, #Friends, spouses and significant others. All #HealthcareProviders , nurse's, researchers, #therapists , and all other people serving any patient.👩‍⚕️👩‍🏫🕵️

🦾1. To show #legislators and governing bodies that ALL patient groups are suffering.
🦾2. To show we are serious about the impact legislative restrictions have had on patients, whether this be at the research level, funding issues, medication approval stage, or insurance approval problems.
🦾3. To show each other support, kindness, and love.
🦾4. To validate one another's tribulations and become refreshed with a sense of purpose.
🦾5. To unify in the direction that a person's medical care is between that person and their provider, whether they be an MD, a DO, a PA, a NP, nurse, physical therapist, massueist, chiropractor, accupuncturist, or any other amazing human that breathes life into our diseased bodies.

Yes, we are working on accessible ground transportation, and lodging.

Yes, there are opportunities to some financial travel assistance.

Yes, there will be guest speakers. Prepared to be inspired!!

Yes, we will work our tooshies off to accommodate every attendee's needs.
#Ehlers -danlos #EhlersDanlosSociety #CRPS #ComplexRegionalPainSyndrome #Fibromyalgia #Fibromyalgia #ChronicPain #Chronicpainwarrior #warrior #LymeDisease #rallyingcry #MultipleSclerosis #Undifferentiatedpleomorphicsarcoma #Cancer #AlzheimersDisease #DiabetesType2 #DiabeticNeuropathy #DiabetesType1 #CongenitalHeartDefectDisease #RareDisease #RheumatoidArthritis #AutonomicDysfunction #Dysautonomia #LivingWithPOTS #BipolarDepression #AdhesiveArachnoiditis #PosturalOrthostaticTachycardiaSyndrome #Lymphedema #IdiopathicThrombocytopenicPurpuraITP #PolycysticOvarySyndrome #Adenomyosis #Endometriosis #BipolarDepression #EctrodactylyEctodermalDysplasiaCleftLipPalate #AdrenalInsufficiency #AutoimmuneImmunodeficiency #ChronicFatigueImmuneDeficiencyDisorder #MyalgicEncephalomyelitis #DependentPersonalityDisorder #Aspergers #Autism #OsteogenesisImperfecta #GastroesophagealRefluxDisease #Insomnia


Have you had major physical setbacks after being diagnosed?

#ChronicFatigueImmuneDeficiencyDisorder #ChronicFatigueSymdrome After 12 years, I am starting to deteriorate again, the last three of which I have been able to become well enough through treatments to work 20 hours a week. This has never happened to me before. My doctor is looking for a solution. Any ideas on what this may be? Would you like to share your own stories if this has happened to you? Thanks!


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