Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
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    Community Voices

    Do you love raffaello as much as I do? 🤔🤔🤔

    <p>Do you love raffaello as much as I do? 🤔🤔🤔</p>
    8 people are talking about this
    Community Voices
    Community Voices

    Working Guessing Game

    The first time I worked(very recently as a student), I was so excited. I was not allowed to have a job during high school and early community college. Makes sense in a way I guess.
    I got ill with Chronic Fatigue Syndrome/Myalgic encephalomyelitis my last semester of community college. I barely attended class. I barely did the minimum. I made it through. Then I remembered my dream of going to a four year university. I kept thinking how I could not do it. But I wanted to try. Call me crazy.

    I am now in my last semester of four year university. I am currently in a field internship as a social work student. Before this, I had never worked. Ever. I also have #Fibromyalgia and #Scoliosis. And apparently, there is something autoimmune wrong with me, but no one seems to know for sure if it’s #Lupus or Rheumatoid. If the results are normal, you cannot really say anything.

    I was so nervous and excited my first day. Nervous? Why? Well, yeah. I was nervous for the obvious first day reasons. But.. I also was nervous about my health issues getting in the day. About me not being able to do this. I have to get 450 hours to actually get my degree. There’s not a way around it.

    So here I am. Crashing constantly trying to finish. When I “crash” or “flare” my throat hurts like crazy. So I cannot tell if I am coming down with strep or am crashing sometimes. My lymph nodes are swollen and hurting. Ears hurt. Fevers. Fatigued, beyond exhausted eyes forced to stay open with the assistance of caffeine. Sore legs and ankles from walking. Heavy lead filled body. Back spasms while at field trying to hide them as I pop a pain pill.

    I’ve been wondering why I tried. Why did I force myself through school to get this degree only to have difficulty working in the end? Can I work? Yeah. Is it hell? Yeah. Am I sure I can do this once I graduate? I have no idea. I keep hoping my body will form a new baseline, and I will get “used” to it. My body somehow got used to driving an hour every day to attend class. It somehow got used to me studying once back and not having much time for anything else. It also got used to me barely doing anything over the summer to rest up.

    I’m just scared to death, because I am constantly guessing at what my body is capable of. And.. I don’t know how much longer I can keep this guessing game up before I end up bound to my room again.

    Community Voices

    I’m exhausted of being exhausted

    My body is battered and tired. I have my first job interview in 11 hours since quitting my dream job and I’m still sick. My body isn’t ready to go to work no matter how much I desire it but the world isn’t ready to understand my body and it’s many chronic diseases. I’m 21 and have severe pains all over every second of the day and when I’m asleep I dream about the pain and wake up feeling nauseous. I’m so young and have to have my boyfriend help me to get up out of bed most days. My body doesn’t care what age I am or how I don’t look sick or that I really want to have a life without chronic pain and nausea. I just want a life where I can keep up with my boyfriend and be able to have a meal outside the house without being in agony because I cannot lie down after. The name chronic fatigue almost belittles the condition that so many of us have. Chronic fatigue isn’t feeling a little sleepy or having a lie in until midday; for some it’s being in agony brushing your hair because your arms can’t tolerate it, it’s crying while you shower because you don’t have the energy to get dry, it’s being unable to keep up with those around you and feeling lonely while you try to rest and it’s feeling like you’re a disappointment because you can’t do what you desperately long to.

    I have doctors tell me fibromyalgia is just a bit of pain and once you exercise and adjust “it’ll go away along with your fatigue” or “why don’t you join the gym?” Unless you have a chronic disease it’s almost impossible to imagine what a person goes through. I have been lucky to find the sweetest and kindest boyfriend to stay by me and look after me when I’m just not capable myself but today I spare a thought for those who aren’t so fortunate. Chronic disease really does turn us into fighters. #ChronicIllness #ChronicFatigueSyndrome #Fibromyalgia

    1 person is talking about this
    Community Voices

    New patient paperwork filled out!

    Tomorrow is an appointment with a specialist from a recommendation from here. I am more excited than nervous. The questions on the forms seem to be about all of the issues that I go through. It is going to be a long process, and not cheap. But... I have hope for the first time that someone is going to know what is wrong, and how to make it better.

    If anyone out there thinks about it please be pray for answers, wisdom, and direction at 2 o’clock ET tomorrow, Thursday, February 21.


    Community Voices
    Community Voices

    Hangin’ on like Mario!!

    <p>Hangin’ on like Mario!!</p>
    Community Voices
    Community Voices
    Community Voices

    What’s the best way to be officially diagnosed with #SensoryProcessingDisorder ? #SensoryOverloads

    I’m chronically ill with #EhlersDanlosSyndrome , #Dysautonomia , #POTS , #ChronicFatigueSyndrome , #MastCellActivationDisorder and more. I’ve recently learned about #SensoryProcessingDisorder and found the answer to so many questions that I’ve always had about sensory issues that have plagued me my whole life. I’ve always had extreme reactions to certain food textures. Loud noises often send me into a full blown panic attack. Normal lighting is too bright for me, and the list goes on. Who should I turn to for a diagnosis?

    2 people are talking about this